The last few weeks I've had more than the usual 'what is your condition exactly?'.
I don't mind being asked about hms/eds, especially if the person asking is enquiring through care and compassion rather than just being nosey.
Because of the complex nature of hms/eds its impossible to get the full extent of the condition across in one or two sentences. So my usual reply is something like "My joints dislocate really easily so I'm in pain alot and get really worn out easily."
I rarely moan or complain about my situation, even on bad days. My non-bendy friends rarely see me on bad days, if at all, and my usual reply to 'how are you feeling today?' is an automatic 'I'm good thanks how are you?'.
Only my fellow bendy friends (those with hms/eds) have a real understanding of the reality of living with the condition.
I'm not keen on people really knowing the full extent of how hms/eds affects me because I hate being seen as weak, a complainer or ungrateful for the good days.
But I think its come to the point where I have too many people enquiring regularly about how I am. I can no longer keep hiding away for half the week, putting on my 'I'm fine' face. So here is that reality for my non-bendy friends and friends of other hms/eds sufferers.
I'm dealing with day 3 of a really bad flare at the moment. A 'flare' for me is when the usual everyday pain and fatigue 'flare' up really bad to the point where I'm either stuck in bed or unable to do anything other than sleep. 'Coma days' are days where I simply sleep right through them, usually 48hr solid sleeps. 'Coma days' can occur without me having a 'flare' in pain and usually happen at least once a week.
A 'flare' on the other hand usually means although I'm stuck in bed and exhausted, my sleep is very broken and difficult due to the pain.
HMS/EDS Pain
Its quite difficult to get the level of the pain hms/eds causes across to non-bendy people.
Pain affects me (and other people with hms/eds) differently throughout the day. There is always some kind of pain going on at any given time.
For me I am always in some level of pain. There is never a time when I am not in pain of some kind. However, when you live with chronic pain, you learn to block out the average day pain. If someone slapped you across the face it would really hurt and you would definitely feel it. If someone slapped you across the face repeatedly without a break you would eventually stop being so affected and shocked by it. It would still hurt but you would get so used to feeling it that you would learn to ignore it.
There are 4 main types of pain that come with hms/eds.
The first is a constant ache that covers my entire body. The best way to describe it is to say it is very similar to that ache you have when you come down with a really bad cold or flu. You ache everywhere with the joints being most painful.
This pain is constant and never goes away. This is the pain that I've learnt to ignore. I still feel it, but I've become so used to it that it doesn't effect how I function.
The second type of pain is when the usual chronic ache becomes more intense than usual. It turns from being like a regular bad cold/flu ache to being similar to the more intense ache you get when you have full blown flu. Most people experience real flu at least once. If you haven't yet experienced it you are lucky as most people will tell you that it is really awful. With real full blown flu the pain is still around your whole body, however it is much worse than the previous example. You are unable to move, even the movement of your ribs during breathing becomes excruciating. This is what the pain is like during a 'flare' for me.
The pain is so bad that I cannot ignore it. I usually am unable to get out of bed during this type of pain. The only thing I can do is to take painkillers and try to sleep through it. However, anyone who has had bad flu will tell you, its very difficult to sleep whilst in this type of pain because it is very difficult to relax enough to fall asleep. If I am able to fall asleep it is usually only for a few minutes at a time. These days are spent trying to distract myself with whatever I am able to do. Usually I am able to have the TV on quietly or listen to some music whilst drifting in and out of sleep. If the pain is starting to diminish, either temporarily or permanently for that flare, I am able to use my laptop to get online or play some simple games. This post for my blog is being written whilst the pain is getting less intense.
The third type of pain that comes with hms/eds is the acute pain that is caused by injury to the joints. If you dislocate a joint it is obviously very painful. With hms/eds not only do you have dislocations, but you also have subluxations. This is a partial dislocation where the end of the bone will move in the joint in a way its not designed to do. For example the elbow might turn more than its supposed to but will not dislocate. Instead it gets stuck partially dislocated. This is a subluxation in it's basic form, still very painful and still needing to be 'popped' back into its normal position. People who know me will be used to me clicking and clunking my elbow and my knuckles to replace a subluxated joint.
When a joint dislocates or subluxates the ligaments and muscles around the joint become damaged in some way. They tend to be overstretched or may even tear. Once a joint is popped back into place the damaged muscles and ligaments will spasm and become very painful usually for a few hours, sometimes even a few days. As well as the muscles and ligaments being very painful, the joint itself will become inflamed as a result of the injury. This is the body's natural response and happens in order to stop the joint from becoming further injured. An inflamed joint is quite sore. Because hms/eds causes the joints to dislocate/subluxate regularly, most people with hms/eds will be dealing with this third type of pain pretty much constantly in one joint or another. For me I have to deal with dislocations around 2-3 times a week and subluxations around 5-10 times a day.
The fourth and final type of pain that comes wit hms/eds is the pain that is caused by permanent damage to the joints. Because the joints are moving much more than they are supposed to, they can wear down which damages the surface of the joint socket and the end of the bone. This leads to osteo-arthritis very early on in people with hms/eds.
I have developed osteo-arthritis in my lower spine, in particular the Sacroiliac joints. These joints are where the bottom of the spine joins the pelvic bone. Normally the joints hardly move at all, but in hms/eds they can be as flexible as any other joint. Arthritis is a painful condition that on its own can in some cases cause serious disability and deforming of the affected joint. In hms/eds the arthritis is a secondary condition which means it's there because of the hms/eds.
Inflammation can also be a permanent condition for some joints, in particular the spine. This inflammation becomes permanent either because the joint is so unstable or becuase the body has got confused and thinks the joint is still injured when it isn't. For me, this constant inflammation occurs in my lower spine and hands.
There are other types of pain that can occur with hms/eds such as pain in the organs that are affected by the condition. For me this happens in the stomach and bowel.
During a bad 'flare' I am usually dealing with the first two types of pain, the 'aches' as well as the pain caused by arthritis and inflammation in my lower spine. The arthritic pain and that caused by inflammation in my hands and spine are triggered during bad flares, especially the spine, which makes it very difficult to move, even to change position in bed. Strong painkillers such as Tramadol, codeine, combined with paracetamol and ibuprofen can help bring the pain levels down to a more bearable level, however they can only be taken every 6 hours and usually only last for 3 at the most. They don't take away the pain but only bring it down a little, but not enough to have me up on my feet. I also take the same painkillers if I have a sudden pain or an build-up of pain in a joint/joints caused from a dislocation/subluxation or inflammation. However due to a rare reaction to medication a few years ago which caused serious effects, I only take my pain medication when the pain becomes more than I can cope with. For those who know me, they are able to tell when the pain is very bad when they see me reaching for my meds.
I use a TENS machine on my spine when the pain is particular bad. This is a small machine that is attached to electrodes on my spine. A small electric charge is passed through the electrodes to the spinal chord blocking the pain signals.
HMS/EDS fatigue/exhaustion
Pain has more than the obvious effect on the body. Being in constant pain requires alot of energy to ignore in order to get on with everyday life. It also drains energy when the pain is particularly bad. As a result, people with chronic pain tend to get worn out very easily. Hms/eds causes energy levels to be seriously reduced anyway due to the muscles using up most of your energy in order to keep the joints stable during movement. So the energy that is ambushed by pain is often the last reserves. This is whey a bad pain flare will wipe me out and cause me to sleep more than normal. If i am not sleeping during a pain flare, I am still too exhausted to do anything other than to dose in bed.
As well as pain causing fatigue and exhaustion, a hms/eds flare will cause the usual fatigue to be worse.
The fatigue and exhaustion caused by hms/eds (not related to pain), is very similar to Chronic fatigue syndrome (CFS/ME). As mentioned earlier, the muscles in hms/eds body have to do all they can to support the unstable joints. This means that they require alot of energy to be constantly working, even when the joint is resting. The amount of energy needed for the muscles can be anything up to two thirds of the energy supply used for other things. 'Stealing' all this energy means there is very little left for the rest of the body to do anything else. Getting out of bed, washed and dressed for someone with hms/eds can be exhausting and can leave them too tired to be able to do anything else for the rest of the day other than rest.
Just like pain, fatigue various in its intensity. For me a good-average day energy-wise is similar to that of a regular person who has had very little or no sleep for a few days whilst still working full time in a physical job. On a good day I can get ready and manage a few hours out in my wheelchair doing some shopping. Or on very good day I am able to sweep the floor in my flat, dust the furniture and take a shower. After that I am usually in alot of pain and so exhausted that I either have to go back to bed or spend the day laid on the settee.
A bad day leaves me with very little energy. Usually just getting out of bed and having breakfast is the limit. Visitors will be asked to forgive me being unwashed and in my pyjamas on these days.
During a 'flare' I may have no energy or very little. These days are spent in bed using my wheelchair to get to the bathroom. I may sleep through most of the day if my pain is not too bad. If pain is also an issue the day is spent in bed dosing on and off listening to music or reading a book if I am able.
People with hms/eds can also suffer from insomnia caused by the pain making it difficult to sleep. A typical night for me consists of two-three hours sleep from which I wake up in pain and spend the rest of the night trying to find things to do to occupy me until daytime. This lack of sufficient sleep makes the fatigue/exhaustion more problematic.
Hms/eds is a condition that affects me differently every day. It's impossible to tell if I will have a good day or a bad day. I make the most of the good days so that it is easier to stay positive on the bad days.
The pain and exhaustion fluctuate so quickly that a good day can quickly turn into a bad day with little warning and vice versa.
It's hard to say what other people can do to help. I think the best thing others can do is just take time to learn about my condition and how it affects me. It's very easy for me to pretend I'm fine when I'm not. Its also very easy for other people to assume I am having a good day when I'm not by how well I can come across. Its also very easy for people to forget I am in pain all the time, even when I am having a very good day.
The only way for others to understand how bad the bad days are is to actually see me in bed unable to move and so exhausted I cannot speak. But I find it too difficult to let people see me like this.
Hopefully this edition of my blog will help others to understand a little how hms/eds affects me.
Showing posts with label hms/eds. Show all posts
Showing posts with label hms/eds. Show all posts
Thursday, 10 June 2010
Tuesday, 8 June 2010
Freedom and Sorrow
Well I've had a rollercoaster of a month with all things bendy.
I finally got my new wheelchair, the ferrari of the wheelchair world. Its a K4 sports chair, designed for wheelchair sports so is ultra light and extremely nippy around town. Even with my pathetic muscles I can push myself in it for hours. The mere idea of popping to the shops for some milk and to post a letter required at least 2 days notice in the past. 1 day to book a friend to carry shopping or push me, 1 day to rest in preparation for the half hour on my crutches or 15mins in the Boneshaker-my other wheelchair, name says it all. But now the only preparation needed is deciding which wheelchair gloves go best with my outfit!
I didn't realise until now just how restricted and isolated I had become. Now I can spend a few hours browsing round the clothes shops or getting 10 tasks done in one outing.
Its taken just 1 week for me to build enough muscle in my arms and stomach to deal with the uphills and uneven surfaces. I haven't mastered doing wheelies down steps yet but I'm already able to tip enough to get up kerbs and can even wheelie on the back wheels while getting 3 or 4 quick pushes in. It won't be long before I'm grinding down the handrail near the war memorial with the skater kids!
I feel like I have some of my life back. I can go out on my own to do the important things like pay bills, get shopping etc. More importantly I can get out on my own to spend time just being outdoors, going to the library and being able to carry books home, getting on the bus on my own! I am so lucky to live in a country where health care is free and even more lucky to live in an area where people like me can be given such high quality performing wheelchairs for free from the NHS (long term loan).
As well as this amazing gift, I have also started developing a social life! 'What, with people?' I hear you say!
Yes!
I've found a church full of wonderful people who already offer to drive me to services and social events. I am terrible at asking people for help so it's so fortunate that they offer before I have to ask. Last week I even made it onto the beach for the first time in over a year, for a birthday party. And even more fortunate that there was a very strong guy who pushed me back up the steepest hill in the world to the carpark at the end of the day.
All this freedom and positivity is having such a good effect. My pain has been worse the last month and my energy is still non-existant, but when you are genuinely happy (as in not faking it so people just think you are happy and coping well), it gives you motivation to push yourself that one step further to get out of bed. This week I went to a bible study group even though I was in more pain than usual and doped up to the eyeballs on painkillers. Normally I would just get into bed and try to sleep through the flare, but I didn't. I got dressed and went to the group, and even though for alot of it i had no idea what was going on because of how ill I felt, I still felt very pleased that I went because I got to laugh more than I've laughed in a long time at the bizarre unrelated tangents we often end up going on.
But as most Bendys know, When there is a positive, there is always a negative following closely behind.
I found out last week that I have a double curvature of the spine. This is quite common in people with Hypermobility Syndrome/Ehlers Danlos, due to the instability of the spine. I had hoped that I had been lucky not to have this, and had been wrongly told by my gp that the x'rays Id had done before Christmas showed my spine to be fine. But unfortunately its there and it's there with a vengeance.
The curvature is causing the lower spine to move in a way that it shouldn't. It's putting all the movement onto the left sacroiliac joint (SI joint-where the spine joins the pelvis). This has caused the joint to grind itself down to the point where it is quite badly damaged. Arthritis is the result of this damage and is irreversible. I understand now why the pain in that area has gotten so bad.
I normally just quickly deal with the next hurdle HMS/EDS brings but this one has knocked me more than usual. It's the long term effect and the problems that could occur that that worry me. It was less than a year ago I had an xray and MRI scan on my spine that came back normal, no curve, no visible damage to the SI joint. So the curve, which is very obvious in the latest xray, and the extent of the damage to the joint has happened in a very short space of time. So where will I be in another year?
Surgery is a big possibility in the future to stabilise the joint and the spine but how soon could that be? Will I need to start splinting/bracing my spine to stop the curve from getting worse? Is it too late for physio to have any effect? Will I be able to walk at all in a years time?
So many unanswered questions.
But to leave on a positive note. After a year of my nurse trying to get a dr to agree to let me use a new treatment to manage the effects HMS/EDS has on my digestive system, we got a 'yes'!. My Rheumatoglist (the bendy dr) has agreed that the only way to manage this part of the condition is to use an expensive and still controversial management treatment. My nurse has said for a while now that my current treatment is running out of 'effective time' and that the only option available is this new treatment. But no other dr would agree to it because they failed to understand (and sometimes believe) that HMS/EDS can have severe effects on the digestive system.
The treatment is one that I will be taught to do myself at home but will be hard work to get used to to begin with. I'm not expecting miracles and I know there are alot of complications that can happen at first but I'm happy to deal with these if it means finding even just a slight improvement of this part of the condition and a definite improvement of quality of life.
All in all this month has had its ups and downs, as is every month when you have a complex multi-system condition. But I have learnt more than ever that it is always better to focus on the positive things and to go to bed smiling, even on the bad days, than it is to allow the bad things to dominate your life.
Happy bending
CX
I finally got my new wheelchair, the ferrari of the wheelchair world. Its a K4 sports chair, designed for wheelchair sports so is ultra light and extremely nippy around town. Even with my pathetic muscles I can push myself in it for hours. The mere idea of popping to the shops for some milk and to post a letter required at least 2 days notice in the past. 1 day to book a friend to carry shopping or push me, 1 day to rest in preparation for the half hour on my crutches or 15mins in the Boneshaker-my other wheelchair, name says it all. But now the only preparation needed is deciding which wheelchair gloves go best with my outfit!
I didn't realise until now just how restricted and isolated I had become. Now I can spend a few hours browsing round the clothes shops or getting 10 tasks done in one outing.
Its taken just 1 week for me to build enough muscle in my arms and stomach to deal with the uphills and uneven surfaces. I haven't mastered doing wheelies down steps yet but I'm already able to tip enough to get up kerbs and can even wheelie on the back wheels while getting 3 or 4 quick pushes in. It won't be long before I'm grinding down the handrail near the war memorial with the skater kids!
I feel like I have some of my life back. I can go out on my own to do the important things like pay bills, get shopping etc. More importantly I can get out on my own to spend time just being outdoors, going to the library and being able to carry books home, getting on the bus on my own! I am so lucky to live in a country where health care is free and even more lucky to live in an area where people like me can be given such high quality performing wheelchairs for free from the NHS (long term loan).
As well as this amazing gift, I have also started developing a social life! 'What, with people?' I hear you say!
Yes!
I've found a church full of wonderful people who already offer to drive me to services and social events. I am terrible at asking people for help so it's so fortunate that they offer before I have to ask. Last week I even made it onto the beach for the first time in over a year, for a birthday party. And even more fortunate that there was a very strong guy who pushed me back up the steepest hill in the world to the carpark at the end of the day.
All this freedom and positivity is having such a good effect. My pain has been worse the last month and my energy is still non-existant, but when you are genuinely happy (as in not faking it so people just think you are happy and coping well), it gives you motivation to push yourself that one step further to get out of bed. This week I went to a bible study group even though I was in more pain than usual and doped up to the eyeballs on painkillers. Normally I would just get into bed and try to sleep through the flare, but I didn't. I got dressed and went to the group, and even though for alot of it i had no idea what was going on because of how ill I felt, I still felt very pleased that I went because I got to laugh more than I've laughed in a long time at the bizarre unrelated tangents we often end up going on.
But as most Bendys know, When there is a positive, there is always a negative following closely behind.
I found out last week that I have a double curvature of the spine. This is quite common in people with Hypermobility Syndrome/Ehlers Danlos, due to the instability of the spine. I had hoped that I had been lucky not to have this, and had been wrongly told by my gp that the x'rays Id had done before Christmas showed my spine to be fine. But unfortunately its there and it's there with a vengeance.
The curvature is causing the lower spine to move in a way that it shouldn't. It's putting all the movement onto the left sacroiliac joint (SI joint-where the spine joins the pelvis). This has caused the joint to grind itself down to the point where it is quite badly damaged. Arthritis is the result of this damage and is irreversible. I understand now why the pain in that area has gotten so bad.
I normally just quickly deal with the next hurdle HMS/EDS brings but this one has knocked me more than usual. It's the long term effect and the problems that could occur that that worry me. It was less than a year ago I had an xray and MRI scan on my spine that came back normal, no curve, no visible damage to the SI joint. So the curve, which is very obvious in the latest xray, and the extent of the damage to the joint has happened in a very short space of time. So where will I be in another year?
Surgery is a big possibility in the future to stabilise the joint and the spine but how soon could that be? Will I need to start splinting/bracing my spine to stop the curve from getting worse? Is it too late for physio to have any effect? Will I be able to walk at all in a years time?
So many unanswered questions.
But to leave on a positive note. After a year of my nurse trying to get a dr to agree to let me use a new treatment to manage the effects HMS/EDS has on my digestive system, we got a 'yes'!. My Rheumatoglist (the bendy dr) has agreed that the only way to manage this part of the condition is to use an expensive and still controversial management treatment. My nurse has said for a while now that my current treatment is running out of 'effective time' and that the only option available is this new treatment. But no other dr would agree to it because they failed to understand (and sometimes believe) that HMS/EDS can have severe effects on the digestive system.
The treatment is one that I will be taught to do myself at home but will be hard work to get used to to begin with. I'm not expecting miracles and I know there are alot of complications that can happen at first but I'm happy to deal with these if it means finding even just a slight improvement of this part of the condition and a definite improvement of quality of life.
All in all this month has had its ups and downs, as is every month when you have a complex multi-system condition. But I have learnt more than ever that it is always better to focus on the positive things and to go to bed smiling, even on the bad days, than it is to allow the bad things to dominate your life.
Happy bending
CX
Wednesday, 28 April 2010
Social Services and Care Support
I have just found out from my social worker today that a care plan has been approved for me to provide me with a carer to support me with personal and social tasks.
Social services have approved the following support for me:
1 hour 3 times a week for a carer to come and give me a bath and get me into bed.
2 hours twice a week for a carer to take me to do my shopping or go to appointments.
4 hours once a month for social stuff eg going for a night out, going for a girly shopping spree with my mum or friends etc.
1 hour once a week for a carer to clean my flat and do my ironing.
There is also a contingency fund so that if my condition deteriates at times and i am stuck in bed they will send a carer to get me out of bed, dressed (if possible) and give me a meal and then come back in the evening to get me back into bed.
I am so happy i can't believe how much support they have said i will get. At first it was only going to be 2 hours twice a week to go shopping and give me a bath. I really hope that getting all of this support will make a big difference. I especially feel hopeful that it will get me back out there and getting a social life back. Iv lost alot of friends over the past year due to my condition deteriating and that is the one thing that i have found hardest of all. I have one friend who visits me regulaly and takes me out in my wheelchair but as he has a milder form of the same condition, he is finding it harder to push me. I also hate my friends having to push my wheelchair or having to rely on friends to go to the bar to get drinks, or help me find a disabled loo, carry my shopping etc. To be honest, I hardly see anyone now so I don't even have the chance to ask them to do these things for me.
It will be great if I can get out more and start spending time with friends again knowing that I won't have to ask them to do anything for me other than just enjoy our time together.
My social worker has spoken to the care agency and they have carer in mind who they said should really suit me. I don't know anything about her yet other than she is young which is what I wanted. That way when we go shopping or out on a night out it will just look like I am with a friend rather than a carer or an older relative.
I feel like this is a massive breakthrough in my region as I don't think there is anyone else with hms/eds who gets care support , or at least to this level. I'm hoping that with them approving this amount of support for me it will make it easier for others with hms/eds to get better support in the future.
People with hms/eds find it extremey difficult to get this type of support due to the lack of understanding of the severity of the condition. It makes it even harder to get support becuase the condition can fluctuate so much within such a small amount of time. This often means that when people with the condition do ask for help, it is refused becuase it is assumed that they can function much better than they can. It is also hard for service providers to provide care on the basis that the support is helpful becuase it PREVENTS deteriation and injury rather than it being as a result of deteriation or injury.
Of the few hundred people I know with hms/eds from the www.hypermobility.org.uk forum and facebook, only a very small handful recieve any support with care. Those who do either have another condition that has justified they need for support or they are at the extreme end of the spectrum being completely dependant on others for even very basic tasks. They often also have children with the condition so the support they recieve is often more support for them to be able to care for their family.
I know of a few people in my town alone, and more in the surrounding area who would benefit from some kind of support from social services, either in terms of care support, or simply with loan of equipment such as bath seats, electronice raising beds etc. I feel positive that with the local social services accepting and approving this level of support for me, that it will mean that others in the area will find it much easier to get the support they need too.
Big step forward for recognition of hms/eds in the care system today!!
Social services have approved the following support for me:
1 hour 3 times a week for a carer to come and give me a bath and get me into bed.
2 hours twice a week for a carer to take me to do my shopping or go to appointments.
4 hours once a month for social stuff eg going for a night out, going for a girly shopping spree with my mum or friends etc.
1 hour once a week for a carer to clean my flat and do my ironing.
There is also a contingency fund so that if my condition deteriates at times and i am stuck in bed they will send a carer to get me out of bed, dressed (if possible) and give me a meal and then come back in the evening to get me back into bed.
I am so happy i can't believe how much support they have said i will get. At first it was only going to be 2 hours twice a week to go shopping and give me a bath. I really hope that getting all of this support will make a big difference. I especially feel hopeful that it will get me back out there and getting a social life back. Iv lost alot of friends over the past year due to my condition deteriating and that is the one thing that i have found hardest of all. I have one friend who visits me regulaly and takes me out in my wheelchair but as he has a milder form of the same condition, he is finding it harder to push me. I also hate my friends having to push my wheelchair or having to rely on friends to go to the bar to get drinks, or help me find a disabled loo, carry my shopping etc. To be honest, I hardly see anyone now so I don't even have the chance to ask them to do these things for me.
It will be great if I can get out more and start spending time with friends again knowing that I won't have to ask them to do anything for me other than just enjoy our time together.
My social worker has spoken to the care agency and they have carer in mind who they said should really suit me. I don't know anything about her yet other than she is young which is what I wanted. That way when we go shopping or out on a night out it will just look like I am with a friend rather than a carer or an older relative.
I feel like this is a massive breakthrough in my region as I don't think there is anyone else with hms/eds who gets care support , or at least to this level. I'm hoping that with them approving this amount of support for me it will make it easier for others with hms/eds to get better support in the future.
People with hms/eds find it extremey difficult to get this type of support due to the lack of understanding of the severity of the condition. It makes it even harder to get support becuase the condition can fluctuate so much within such a small amount of time. This often means that when people with the condition do ask for help, it is refused becuase it is assumed that they can function much better than they can. It is also hard for service providers to provide care on the basis that the support is helpful becuase it PREVENTS deteriation and injury rather than it being as a result of deteriation or injury.
Of the few hundred people I know with hms/eds from the www.hypermobility.org.uk forum and facebook, only a very small handful recieve any support with care. Those who do either have another condition that has justified they need for support or they are at the extreme end of the spectrum being completely dependant on others for even very basic tasks. They often also have children with the condition so the support they recieve is often more support for them to be able to care for their family.
I know of a few people in my town alone, and more in the surrounding area who would benefit from some kind of support from social services, either in terms of care support, or simply with loan of equipment such as bath seats, electronice raising beds etc. I feel positive that with the local social services accepting and approving this level of support for me, that it will mean that others in the area will find it much easier to get the support they need too.
Big step forward for recognition of hms/eds in the care system today!!
Tuesday, 27 April 2010
eds/hms videos
here are a couple of videos that look at eds/hms. Not up to posting a long blog today due to a naff day pain wise but very pleased to say i passed my driving theory exam today Woohoo!!
here are the links to the videos. enjoy!
http://www.youtube.com/watch?v=PunQu-bId1M
http://www.ehlersdanlosnetwork.org/mysterydiagnosis.html
here are the links to the videos. enjoy!
http://www.youtube.com/watch?v=PunQu-bId1M
http://www.ehlersdanlosnetwork.org/mysterydiagnosis.html
Sunday, 25 April 2010
My bendy story
Like everyone with hms/eds, I was born with the condition. There were obvious signs something was wrong very early on but due to the common lack of knowledge of the condition i did not get diagnosed until I was 27years old, by this time the condition had become quite bad.
Although There didn't appear to be any problems when I was born, I did have hms/eds symptoms as an infant. I did not walk until I was 4 years old, which is common with hms/eds, but this was put down to me developing slowly.
When I did start to walk I would become tired easily and it took my parents a few years of hard work to get me to walk normally.
I complained of pain in my legs from an early age but drs put it down to growing pains (again very common for people with hms/eds). At age 12 I started to get alot of pains in my chest. This was the start of my ribs dislocating (yes ribs can and do dislocate in people with hms/eds although alot of drs will swear blind they do not, even when they see it themselves). Again, after various hospital visits and lots of tests, it was put down to growing pains.
I injured myself very easily and was covered in bruises and sprained joints as child but it wasn't until I was 20yrs old that I myself started to think something wasn't right. I started having problems with back pain which I visited my gp for on a few occasions but this was dismissed as being 'psychological' rather than a physical issue. I also started having more and more problems with my digestive system which was put down to IBS as a result of 'stress'.
By the time I went to uni at the age of 22 I was struggling more and more with poor energy levels and widespread pain. I studied performing arts and a weekly dance class would leave me stuck in bed exhausted and usually with at least one injury. My 'IBS' became much worse and I was eventually seen by a specialist who tested me for Crohns disease (which runs in the family). However no crohns showed up so again it was diagnosed as IBS. In my 2nd year at uni I spent a month bedridden due to the back pain and stomach pain become so severe that I could not move. Eventually after lots of rest things improved and I was back to my normal self.
At age 25 things started to deteriorate and my symptoms became more and more frequent. I was finding walking tiring and was becoming more and more fatigued. Even after a good nights sleep I would need to go to bed for a few hours in the afternoon. My back pain become more severe again and the pain episodes became more frequent. Again I asked my gp for help but once again it was put down to depression, which was becoming the constant cause of my problems according to drs.
When I was 27 I was becoming less able to stand and walk. I started to use a walking stick to help me stay on my feet longer and even started hiring electric wheelchairs from Shopmobility (a wheelchair hire company) in order to go shopping. I noticed at this point that my toes were curling under each other. I thought that maybe this was the reason I was finding walking harder so I decided to visit a private chiropodist. I was fed up with my gp at this point who was equally fed up with me.
The chiropodist I saw was the first person to mention the word 'hypermobility'. I had never heard of this before so didn't think much of it when she told me the bones in my feet and ankles were very hypermobile. She gave me some orthotic supports to wear in my shoes which would lift the flat feet and support my feet. I went home and decided to look into hypermobility rather than go to my gp as she had advised. I was gobsmacked when I came across hypermobiltiy syndrome as I was like someone had written all my problems down and given it a name.
I couldn't believe how much the condition fitted my history or problems. I was amazed how I had had so many obvious signs of the condition but no one had picked up on it.
I didn't dare go to my gp and ask for a referral to a rheumatologist as advised by the information I had found because by this point the word 'hypochondriac' was beginning to appear on my medical notes. Alot of people with hms/eds are labelled as hypochondriacs or attention seekers by gps and drs who refuse to take the person's concerns seriously. When tests continue to come back normal and more common conditions are ruled out, gps often put the symptoms of rare conditions like hms/eds down to psychological issues.
I carried on as I was using my walking stick and spending more and more time in bed and less and less time doing things. After about 6months of finding out about hypermobility syndrome, my back pain kicked off big time. The pain level was so high that I was spending more and more time unable to move and stuck in bed crying with the pain. I was trying everything I could including heat wraps, hot baths, massage, over the counter pain relief and even psycological techniques but nothing worked. My hips and knees were now becoming very wobbly and were starting to dislocate. One night my knee dislocated badly while in bed and it took me 30 minutes before it eventually went back into position. The next day I went to Boots the chemist and asked the pharmacy for the strongest pain relief they had. She asked what problems I was having and she said that I needed to ask my gp to refer me to a rheumatologist to examine me for hypermobility syndrome. After another week I finally bit the bullet and made an appointment with my gp.
I took the letter the chiropodist had written for me and told him all about the problems I had had and showed him information on hypermobiltiy syndrome. He was not impressed at all. He told me that I had no right to assume I knew my body better than he did and that I had to stop trying to seek attention and to stop making things up. I couldn't believe how horrible he was. I had gone to him with loads of information and the possible key to solving the mystery of years of endless symptoms. I burst out crying as I thought, 'this is it, this is the end, I'm never going to find the answer'. Crying obviously reinforced his opinion that my problems were down to depression but he told me he would refer me to a specialist just to prove to me there was nothing wrong with me.
The day I saw the rheumatoglist was the happiest day I had had in a long time but also, just like with my gp, became a day of having any hope of help crushed.
The specialist examined me testing the movement in every joint. At one point my hip dislocated as he moved it which made him panic. Eventually after 20mins of prodding and poking he confirmed that yes, I did have Hypermobility Syndrome. I couldn't believe it! I was so happy I had finally been told it wasn't in my head.
But then it turned sour. The specialist told me that the condition doesn't really cause any real problems, that it just means you are very bendy and that it can actually be a good thing if you are a dancer or sports person. He said that the level of pain I said I had couldn't be caused by the condition and so he was doubtful that my pain was a bad as I said it was. He also said that I shouldn't need a walking stick and that i just need to exercise more and spend less time in bed. The exhaustion, he said, was also not related. I was devastated. I had found a forum on the Internet for people with hms/eds and had read that many people had experienced the exact same thing. They finally get a diagnosis but are told that its not that big a deal and to just get over it and get on with your life.
I was offered no treatment. None of the recommended things I had read that would help such as physio, pain medication, splints etc.
I went home very confused. I was so happy I had finally got a diagnosis but had no idea what I was going to do about it. I decided to change gps that day as I had succeeded in proving to my gp that he was wrong and did not look forward to having to see him again.
My condition continued to deteriorate over the following year and eventually I was refereed to physiotherapy after a very bad dislocation of my shoulder. At last I was going to get help. However I was seen by a trainee therapist who, after just 3 sessions, told me that physio won't make any difference and I was discharged.
My new gp was more sympathetic than my previous one and by this time had put me on codiene to help with the pain. He also refereed me to be assessed for a wheelchair and also refereed me to a specialist nurse to help manage the digestive system problems I was having by that point.
After a further year of my gp trying to help me, I discovered there was a dr in Leeds called Professor Bird who specialised in Hypermobility Syndrome. He had a specialist clinic of physiotherapists, occupational therapists and other staff who he had trained to treat and understand hms/eds at a high level.
I asked my gp to refer me to see this amazing dr who had developed a great reputation on the online hms/eds forum. My gp agreed.
6months later I had my first appointment with Prof. Bird. He examined me and took a very detailed medical history of myself and all of my family. He confirmed I had Hypermobility syndrome and that most of my joints were affected. He also told my mum who was with me that she too had the condition due to her medical history and from what he could see of her joints. He also said that it sounded like my father also had the condition and this is why, by this point, the condition had become very serious for myself.
After taking xrays and blood tests he refereed me to see his physiotherapists and occupational therapists.
I went home extremely happy that at last the pain and exhaustion I had were genuine and that I had been right all along to fight for someone to take me seriously. However I was also very upset that it had taken so long and as a result my joints were now in serious condition.
Prof. Bird advised my gp to put me on a high dose of tramadol and amytriptaline for pain relief. He also asked that I would be refered to see various other specialists to look into the related problems I had.
A few months later Prof. Bird contacted my gp to say that the xrays I had done showed that I had already developed osteoarthritis in my lower spine and that the Sacralilliac joints (where the spine joins the pelvis) were degenerating. Although this can be a result of hms/eds, because of the family history of crohns disease he wants to look into this again as this type of degeneration of these joints is often a result of crohns diesease.
My physiotherapy and occupational therapy assesments confirmed that my joints had become very unstable and weak as a result of recieving no treatment for so long. I was refered back to my local physio department under a senior therapist with the advice that I should recieve treatment indefinatly on a weekly basis. My new therapist is amazing and understands the condition so well.
I was given various splints for my wrists and hands by the occupational therpaist and advised to ask my social services to provide me with various aids such as a bath seat that lowers me into the bath, as well as equipment to lift me up to sitting position in bed.
I am due to see professor bird again in about 6 weeks time. I am hoping that he will have more information on my test results and has decided whether to be tested again for crohns disease.
Prof. Bird is due to retire in the summer so I am hoping to be reffered to another rheumatologist in Newcastle who also specialises in hms/eds.
I now have a social worker who is in the process of setting up a care plan for me in order for me to recieve support from a carer a few times a week in order to help me bathe, shop, and make meals.
I am also waiting for a new wheelchair that has been made for me by the nhs. The new chair is much lighter than my current one so I should be able to push myself. Its also designed for much more frequent use including for inside my home as my mobility has become less and less.
I am also having driving lessons in an adapted car so that I can remain independant.
My story shows just how quickly and rapidly hms/eds can deteriate when no treatment is offered. It shows how much damage can be done by ignoring the problems and why it is essential for gps and drs to gain more understanding of connective tissue disorders.
I am luckier than some as I am now receiving very good support and treatment. Even though it was a long hard fight, some people are still fighting.
I have no idea what the future holds but I do know that I am unlikely to be able to walk properly again and that my condition will continue to deteriate rather than improve. I have learnt alot in the past year about how treat my pain effectively with medications, TENS, and heat treatment. I have also developed more understanding of the importance of pacing myself strictly so that I use the little energy I have effectively. I have learnt not to feel guilty or upset when I am unable to get out of bed and to feel ok about not being able to do alot of things that I used to be able to do.
I feel much happier in myself and while my quality of life has reduced a great deal, I no longer suffer from depression and feel very positive about life.
I hope that in the future more drs gain understanding of the condition and it my dream that one day, people with hms/eds recieve a diagnosis and appropriate treatment very early on so that no one has to become as disabled as I am.
It is also my dream that one day a cure will be discovered so that people with hms/eds can at least be prevented from deteriating further.
Although There didn't appear to be any problems when I was born, I did have hms/eds symptoms as an infant. I did not walk until I was 4 years old, which is common with hms/eds, but this was put down to me developing slowly.
When I did start to walk I would become tired easily and it took my parents a few years of hard work to get me to walk normally.
I complained of pain in my legs from an early age but drs put it down to growing pains (again very common for people with hms/eds). At age 12 I started to get alot of pains in my chest. This was the start of my ribs dislocating (yes ribs can and do dislocate in people with hms/eds although alot of drs will swear blind they do not, even when they see it themselves). Again, after various hospital visits and lots of tests, it was put down to growing pains.
I injured myself very easily and was covered in bruises and sprained joints as child but it wasn't until I was 20yrs old that I myself started to think something wasn't right. I started having problems with back pain which I visited my gp for on a few occasions but this was dismissed as being 'psychological' rather than a physical issue. I also started having more and more problems with my digestive system which was put down to IBS as a result of 'stress'.
By the time I went to uni at the age of 22 I was struggling more and more with poor energy levels and widespread pain. I studied performing arts and a weekly dance class would leave me stuck in bed exhausted and usually with at least one injury. My 'IBS' became much worse and I was eventually seen by a specialist who tested me for Crohns disease (which runs in the family). However no crohns showed up so again it was diagnosed as IBS. In my 2nd year at uni I spent a month bedridden due to the back pain and stomach pain become so severe that I could not move. Eventually after lots of rest things improved and I was back to my normal self.
At age 25 things started to deteriorate and my symptoms became more and more frequent. I was finding walking tiring and was becoming more and more fatigued. Even after a good nights sleep I would need to go to bed for a few hours in the afternoon. My back pain become more severe again and the pain episodes became more frequent. Again I asked my gp for help but once again it was put down to depression, which was becoming the constant cause of my problems according to drs.
When I was 27 I was becoming less able to stand and walk. I started to use a walking stick to help me stay on my feet longer and even started hiring electric wheelchairs from Shopmobility (a wheelchair hire company) in order to go shopping. I noticed at this point that my toes were curling under each other. I thought that maybe this was the reason I was finding walking harder so I decided to visit a private chiropodist. I was fed up with my gp at this point who was equally fed up with me.
The chiropodist I saw was the first person to mention the word 'hypermobility'. I had never heard of this before so didn't think much of it when she told me the bones in my feet and ankles were very hypermobile. She gave me some orthotic supports to wear in my shoes which would lift the flat feet and support my feet. I went home and decided to look into hypermobility rather than go to my gp as she had advised. I was gobsmacked when I came across hypermobiltiy syndrome as I was like someone had written all my problems down and given it a name.
I couldn't believe how much the condition fitted my history or problems. I was amazed how I had had so many obvious signs of the condition but no one had picked up on it.
I didn't dare go to my gp and ask for a referral to a rheumatologist as advised by the information I had found because by this point the word 'hypochondriac' was beginning to appear on my medical notes. Alot of people with hms/eds are labelled as hypochondriacs or attention seekers by gps and drs who refuse to take the person's concerns seriously. When tests continue to come back normal and more common conditions are ruled out, gps often put the symptoms of rare conditions like hms/eds down to psychological issues.
I carried on as I was using my walking stick and spending more and more time in bed and less and less time doing things. After about 6months of finding out about hypermobility syndrome, my back pain kicked off big time. The pain level was so high that I was spending more and more time unable to move and stuck in bed crying with the pain. I was trying everything I could including heat wraps, hot baths, massage, over the counter pain relief and even psycological techniques but nothing worked. My hips and knees were now becoming very wobbly and were starting to dislocate. One night my knee dislocated badly while in bed and it took me 30 minutes before it eventually went back into position. The next day I went to Boots the chemist and asked the pharmacy for the strongest pain relief they had. She asked what problems I was having and she said that I needed to ask my gp to refer me to a rheumatologist to examine me for hypermobility syndrome. After another week I finally bit the bullet and made an appointment with my gp.
I took the letter the chiropodist had written for me and told him all about the problems I had had and showed him information on hypermobiltiy syndrome. He was not impressed at all. He told me that I had no right to assume I knew my body better than he did and that I had to stop trying to seek attention and to stop making things up. I couldn't believe how horrible he was. I had gone to him with loads of information and the possible key to solving the mystery of years of endless symptoms. I burst out crying as I thought, 'this is it, this is the end, I'm never going to find the answer'. Crying obviously reinforced his opinion that my problems were down to depression but he told me he would refer me to a specialist just to prove to me there was nothing wrong with me.
The day I saw the rheumatoglist was the happiest day I had had in a long time but also, just like with my gp, became a day of having any hope of help crushed.
The specialist examined me testing the movement in every joint. At one point my hip dislocated as he moved it which made him panic. Eventually after 20mins of prodding and poking he confirmed that yes, I did have Hypermobility Syndrome. I couldn't believe it! I was so happy I had finally been told it wasn't in my head.
But then it turned sour. The specialist told me that the condition doesn't really cause any real problems, that it just means you are very bendy and that it can actually be a good thing if you are a dancer or sports person. He said that the level of pain I said I had couldn't be caused by the condition and so he was doubtful that my pain was a bad as I said it was. He also said that I shouldn't need a walking stick and that i just need to exercise more and spend less time in bed. The exhaustion, he said, was also not related. I was devastated. I had found a forum on the Internet for people with hms/eds and had read that many people had experienced the exact same thing. They finally get a diagnosis but are told that its not that big a deal and to just get over it and get on with your life.
I was offered no treatment. None of the recommended things I had read that would help such as physio, pain medication, splints etc.
I went home very confused. I was so happy I had finally got a diagnosis but had no idea what I was going to do about it. I decided to change gps that day as I had succeeded in proving to my gp that he was wrong and did not look forward to having to see him again.
My condition continued to deteriorate over the following year and eventually I was refereed to physiotherapy after a very bad dislocation of my shoulder. At last I was going to get help. However I was seen by a trainee therapist who, after just 3 sessions, told me that physio won't make any difference and I was discharged.
My new gp was more sympathetic than my previous one and by this time had put me on codiene to help with the pain. He also refereed me to be assessed for a wheelchair and also refereed me to a specialist nurse to help manage the digestive system problems I was having by that point.
After a further year of my gp trying to help me, I discovered there was a dr in Leeds called Professor Bird who specialised in Hypermobility Syndrome. He had a specialist clinic of physiotherapists, occupational therapists and other staff who he had trained to treat and understand hms/eds at a high level.
I asked my gp to refer me to see this amazing dr who had developed a great reputation on the online hms/eds forum. My gp agreed.
6months later I had my first appointment with Prof. Bird. He examined me and took a very detailed medical history of myself and all of my family. He confirmed I had Hypermobility syndrome and that most of my joints were affected. He also told my mum who was with me that she too had the condition due to her medical history and from what he could see of her joints. He also said that it sounded like my father also had the condition and this is why, by this point, the condition had become very serious for myself.
After taking xrays and blood tests he refereed me to see his physiotherapists and occupational therapists.
I went home extremely happy that at last the pain and exhaustion I had were genuine and that I had been right all along to fight for someone to take me seriously. However I was also very upset that it had taken so long and as a result my joints were now in serious condition.
Prof. Bird advised my gp to put me on a high dose of tramadol and amytriptaline for pain relief. He also asked that I would be refered to see various other specialists to look into the related problems I had.
A few months later Prof. Bird contacted my gp to say that the xrays I had done showed that I had already developed osteoarthritis in my lower spine and that the Sacralilliac joints (where the spine joins the pelvis) were degenerating. Although this can be a result of hms/eds, because of the family history of crohns disease he wants to look into this again as this type of degeneration of these joints is often a result of crohns diesease.
My physiotherapy and occupational therapy assesments confirmed that my joints had become very unstable and weak as a result of recieving no treatment for so long. I was refered back to my local physio department under a senior therapist with the advice that I should recieve treatment indefinatly on a weekly basis. My new therapist is amazing and understands the condition so well.
I was given various splints for my wrists and hands by the occupational therpaist and advised to ask my social services to provide me with various aids such as a bath seat that lowers me into the bath, as well as equipment to lift me up to sitting position in bed.
I am due to see professor bird again in about 6 weeks time. I am hoping that he will have more information on my test results and has decided whether to be tested again for crohns disease.
Prof. Bird is due to retire in the summer so I am hoping to be reffered to another rheumatologist in Newcastle who also specialises in hms/eds.
I now have a social worker who is in the process of setting up a care plan for me in order for me to recieve support from a carer a few times a week in order to help me bathe, shop, and make meals.
I am also waiting for a new wheelchair that has been made for me by the nhs. The new chair is much lighter than my current one so I should be able to push myself. Its also designed for much more frequent use including for inside my home as my mobility has become less and less.
I am also having driving lessons in an adapted car so that I can remain independant.
My story shows just how quickly and rapidly hms/eds can deteriate when no treatment is offered. It shows how much damage can be done by ignoring the problems and why it is essential for gps and drs to gain more understanding of connective tissue disorders.
I am luckier than some as I am now receiving very good support and treatment. Even though it was a long hard fight, some people are still fighting.
I have no idea what the future holds but I do know that I am unlikely to be able to walk properly again and that my condition will continue to deteriate rather than improve. I have learnt alot in the past year about how treat my pain effectively with medications, TENS, and heat treatment. I have also developed more understanding of the importance of pacing myself strictly so that I use the little energy I have effectively. I have learnt not to feel guilty or upset when I am unable to get out of bed and to feel ok about not being able to do alot of things that I used to be able to do.
I feel much happier in myself and while my quality of life has reduced a great deal, I no longer suffer from depression and feel very positive about life.
I hope that in the future more drs gain understanding of the condition and it my dream that one day, people with hms/eds recieve a diagnosis and appropriate treatment very early on so that no one has to become as disabled as I am.
It is also my dream that one day a cure will be discovered so that people with hms/eds can at least be prevented from deteriating further.
What is Hypermobility Syndrome/Ehlers Danlos Syndrome
Before I start blogging about living with Hypermobility Syndrome/Ehlers Danlos Syndrome (hms/eds) it makes sense to explain what the condition is about.
Alot of people have never heard of hms/eds and those who have, often don't understand what exactly it is, after all its a very complex condition that even most drs don't even understand.
(added 2010)---
Hms/Eds is pretty much the same condition. Previously Hypermobility Syndrome and Ehlers Danlos were thought to be different conditions (with Ehlers danlos being more severe). However Drs have now agreed they are in fact the same condition, or there is so little difference between them, that people with either 'diagnosis' need treating exactly the same. So they are now seen as the same condition. Ehlers Danlos:Hypermobility Type. This is why often a person who is diagnosed with hms often hears drs refer to their condition as eds.
---
So in this blog I will use the term hms/eds. (in later entries I will refer to it as simply EDS).
They are connective tissue disorders which basically mean there is something wrong with the person's connective tissue, Collagen. You are born with hms/eds, it is not something you suddenly get, although some people (like myself) have very few problems until they reach their 20s). It is an inherited condition which means at least one parent will usually also have the condition however it often becomes more severe each time it is passed onto the next generation.
Collagen is a protein based material that has the basic job of allowing body parts to move. Collagen is present in the joints, mainly the ligaments, tendons and muscles, organ tissue, and skin. Its job in the joints is to allow the joint to stretch and move but also stops it from moving too much. If our joints didnt have a 'stop' point then our joints would not be able to support us and basic movemnets would be impossible. Our joints would fall apart. This is basically what happens in hms/eds. In people without hms/eds, the collagen is made up of fibres that stretch like an elastic band. If you stretch an elastic band eventually it snaps back to its 'unstretched' state which stops the elastic band from snapping. In hms/eds the fibres are like chewing gum rather than an elastic band. If you stretch a piece of chewing gum you know that eventually it tears and you end up with sticky gum all over your fingers! This is what the collagen is like in people with hms/eds. The collagen stretches and stretches but does not snap back. This means the joints stretch and move but move and stretch past the point they are supposed to. They are very bendy and wobbly and don't snap back into place and eventually when a joint stretches past the point its supposed to, it dislocates. Ouch!!
In hms/eds the main symptom is joints that dislocate on a very regular basis, often many times in just one day.
When you have joints that dislocate easily and joints which are bendy and wobbly, they don't do a good job of keeping you in one piece. Your body becomes very weak and unstable. Just trying to stand up can be impossible as you may have knees and hips that don't lock and wobble all over until you end up in a pile on the floor. This makes walking pretty tough too.
If your spine is unstable it makes it difficult to sit up straight and also contributes to the problems with standing and walking.
In the upper body, bendy joints in the shoulders, elbows, wrists and knuckles make it difficult to lift things, push yourself up from a lying position, and use things like cutlery, a toothbrush, a pen and even the crutches and walking sticks that help you to stand and walk become difficult to use.
Because of the bendiness of the joints, a person with hms/eds will use their joints over a 1000 times more in one day than a regular person. This means their joints grind and rub against the ends of their bones many more times than someone else of the same age. As a result the joints and bones get worn down very quickly which results in a very early development of osteoarthritis. People with hms/eds usually develop osteoarthritis as a result of degeneration of the joints as well as inflamation of the joints often before the age of 30. They also can develop osteoperosis, where the bones become weak, very early on.
Becuase collagen is present in organ tissue as well as the joints, people with the condition can also have problems with their organs, in particular, organs that are designed to move. The bowel and intestines work by muscles contracting to push food and waste through them. Because the muscles in hms/eds are much laxer(more relaxed and stretchier), they don't contract as well so in the bowel and intestines, the muscles don't do a very good job of moving food and waste along. This means that people with the condition often have alot of problems with the intestines and bowel, in particular ibs, slow transit, incontinence and other similar problems.
The same goes for the bladder too.
In women with hms/eds, the womb has to contract much harder during her period in order to shed the unused lining (this is basically what a period is). This results in very painful and very heavy periods. It also makes it difficult to maintian a pregnancy and many women with hms/eds experience more miscarriges and problems conceiving.
The heart is another organ that can be affected due to the amount of movement it requires to work. In certain types of Ehlers danlos, the heart can have serious issues such as heart murmers, slow and irregluar heart rates. People with the vascular type of Ehlers Danlos are at great risk of anurysisms and heart failure due to the rupturing of the blood vessels. The same with the brain which can result in stokes.
The skin is another major body part that is affected by hms/eds. In particular it is often very stretchy and soft which makes it more fragile. This makes it prone to tearing very easily and very poor at healing. People with hms/eds often have alot of scars that look like they are from serious injuries when in fact they can be from something as simple as a scratch. The skin also bruises very easily, often from simple things like kneeling on the floor or getting a hug from someone.
Because the joints in hms/eds are very unstable, the muscles around the joints have to do all the work to keep them held together. This means that most of your energy gets used up by the muscles. This means that people with the condition suffer really badly from exhaustion and very poor energy levels. Something as simple as walking up the stairs can exhaust the person so much that they have to lie down for 30mins to recover. This means that alot of people with the condition are also diagnosed with CFS/ME. Having such poor energy levels makes it even harder to do basic tasks such as dressing, washing etc.
For some reason, people with hms/eds are much more prone to alot of other conditions. Some conditions occur for obvious reasons to do with the weakend collagen and energy issues, other conditions occur but don't seem to have an obvious reason why.
The related conditions that people with hms/eds tend to also have include:
Fibromyalgia, flat feet, raynauds syndrome, insommnia, curvature of the spine, kyphosis (a hump at the top of the spine), hernias, neuropathy, carpel tunnel syndrome, premature aging of the skin, strokes, heart murmurs, rheumatoid arthritis, automic dsyfunction (a dysfuntion of the body's ability maintain normal function of systems such as blood pressure) and much more.
Hms/Eds varies massivley in severity. Some people may have very few problems and lead normal lives, able to do the same as people without the condition. At the other end of the scale, some people are seriously affected by the condition resulting in severe disability. They may depend on a wheelchair, they may need help to dress, bathe, change position in bed etc. In some cases, a person with hms/eds may become bedridden for periods of time due to the severity of the condition. People who are effected badly may not be able to work and rely on the help of others to get through the day. And of course in the case of Vascular EDS, the condition can often be fatal.
Because hms/eds is caused by a defect in the collagen fibres, there is currently no cure. Treatment concentrates on keeping the joints as strong as possible to delay the onset of degeneration. Physiotherapy concentrates on building the muscle strength around the joints. Occupational therapy looks at aids that can help make tasks easier.
Pain is a major symptom so becomes the main focus for treatment. Pain in hms/eds is difficult to control becuase it can fluctuate easily. But in alot of cases, medications such as tramadol, codiene and even morphine are used to help manage the pain. It often does not take the pain away but only brings it down to a more mangeble level.
Sometimes surgery is required to stablise joints but this is done less and less now as drs are aware now that operating on a joint just makes the other joints more unstable. Steroid injections are used more and more now to stablies joints by reducing inflamation. Steroids are injected directly into the joint which is extremely painful and doesnt work for everyone.
Other treatment focuses on stablising the joints with splints and braces so a person with the condition may wear various splints on their wrists, elbows, knees and ankles. They may also wear splinted supports to stabalise the spine, hips and shoulders. And of course the related conditions need to be treated. So someone who suffers from the hms affecting their bladder may need to use catherters and incontinence products.
Becuase the joints of a person with hms/eds are so unstable and dislocate so easily, alot of the time they go back into the right position very easily so people with the condition often learn fix to dislocated joints themselves. Sometimes however they do need to go to hospital as a result of a bad dislocation. People who suffer from the effcts of severe hms/eds often spend alot of time in hospital reciving intensive physiotherapy and pain treatment. They often have many drs from different areas such as rheumatology, endochronology, gasteonterology, etc and can have a hosptial appointment every week sometimes more than once a week!
Hms/Eds is becoming more recognised as a seroius condition by drs. Many people with the condition spend years trying to get drs to take them seriously and to get a diagnosis. Even then treatment can be very difficult to get. This is still the case in alot of places and as a result many people with hms/eds have to travel alot to recieve treatment and care from specialists who have more knowledge of the condition. There are currently only around 4 hms/eds clinics in the UK!
One of the biggest problems people with hms/eds face is the lack of understanding from friends, family and collegues. A person with hms/eds may appear to be fine, especially if they can walk. Often a person with hms/eds may be able to do something one day but not the next such as pouring a kettle or walking up the stairs. So it becomes difficult for others to understand just how difficult the condition can be. Even those who use wheelchairs or crutches to walk can experince problems with people not understanding. This can make relationships and friendships difficult and often a person with hms/eds becomes isolated as friends slowly disapear. Often a person with hms/eds has alot of bad days where they are unable to get out of bed or to go out. This means that friends often only see them on a good day so they then think that this is how the person is all of the time. They often don't comprehend how bad the bad days are.
Hms/Eds is a very complex condition that can affect the person's life in many ways. The condition often affects social and work life and can even greatly affect quality of life. Becuase of the massive range of issues the condition causes, people with hms/eds often struggle with many things that others take for granted. The lack of understanding of the condition and due to how it can fluctuate on a daily basis leads to the person finding it difficult to maintain friendships and to recieve emotional support from others.
This blog is intended to allow people to understand the daily issues living with hms/eds causes. It also is intended to highlight the strength and determination people with the condition have to get on with their lives and the ongoing fight they have to recieve appropriate treatment, and more importantly, understanding.
Alot of people have never heard of hms/eds and those who have, often don't understand what exactly it is, after all its a very complex condition that even most drs don't even understand.
(added 2010)---
Hms/Eds is pretty much the same condition. Previously Hypermobility Syndrome and Ehlers Danlos were thought to be different conditions (with Ehlers danlos being more severe). However Drs have now agreed they are in fact the same condition, or there is so little difference between them, that people with either 'diagnosis' need treating exactly the same. So they are now seen as the same condition. Ehlers Danlos:Hypermobility Type. This is why often a person who is diagnosed with hms often hears drs refer to their condition as eds.
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So in this blog I will use the term hms/eds. (in later entries I will refer to it as simply EDS).
They are connective tissue disorders which basically mean there is something wrong with the person's connective tissue, Collagen. You are born with hms/eds, it is not something you suddenly get, although some people (like myself) have very few problems until they reach their 20s). It is an inherited condition which means at least one parent will usually also have the condition however it often becomes more severe each time it is passed onto the next generation.
Collagen is a protein based material that has the basic job of allowing body parts to move. Collagen is present in the joints, mainly the ligaments, tendons and muscles, organ tissue, and skin. Its job in the joints is to allow the joint to stretch and move but also stops it from moving too much. If our joints didnt have a 'stop' point then our joints would not be able to support us and basic movemnets would be impossible. Our joints would fall apart. This is basically what happens in hms/eds. In people without hms/eds, the collagen is made up of fibres that stretch like an elastic band. If you stretch an elastic band eventually it snaps back to its 'unstretched' state which stops the elastic band from snapping. In hms/eds the fibres are like chewing gum rather than an elastic band. If you stretch a piece of chewing gum you know that eventually it tears and you end up with sticky gum all over your fingers! This is what the collagen is like in people with hms/eds. The collagen stretches and stretches but does not snap back. This means the joints stretch and move but move and stretch past the point they are supposed to. They are very bendy and wobbly and don't snap back into place and eventually when a joint stretches past the point its supposed to, it dislocates. Ouch!!
In hms/eds the main symptom is joints that dislocate on a very regular basis, often many times in just one day.
When you have joints that dislocate easily and joints which are bendy and wobbly, they don't do a good job of keeping you in one piece. Your body becomes very weak and unstable. Just trying to stand up can be impossible as you may have knees and hips that don't lock and wobble all over until you end up in a pile on the floor. This makes walking pretty tough too.
If your spine is unstable it makes it difficult to sit up straight and also contributes to the problems with standing and walking.
In the upper body, bendy joints in the shoulders, elbows, wrists and knuckles make it difficult to lift things, push yourself up from a lying position, and use things like cutlery, a toothbrush, a pen and even the crutches and walking sticks that help you to stand and walk become difficult to use.
Because of the bendiness of the joints, a person with hms/eds will use their joints over a 1000 times more in one day than a regular person. This means their joints grind and rub against the ends of their bones many more times than someone else of the same age. As a result the joints and bones get worn down very quickly which results in a very early development of osteoarthritis. People with hms/eds usually develop osteoarthritis as a result of degeneration of the joints as well as inflamation of the joints often before the age of 30. They also can develop osteoperosis, where the bones become weak, very early on.
Becuase collagen is present in organ tissue as well as the joints, people with the condition can also have problems with their organs, in particular, organs that are designed to move. The bowel and intestines work by muscles contracting to push food and waste through them. Because the muscles in hms/eds are much laxer(more relaxed and stretchier), they don't contract as well so in the bowel and intestines, the muscles don't do a very good job of moving food and waste along. This means that people with the condition often have alot of problems with the intestines and bowel, in particular ibs, slow transit, incontinence and other similar problems.
The same goes for the bladder too.
In women with hms/eds, the womb has to contract much harder during her period in order to shed the unused lining (this is basically what a period is). This results in very painful and very heavy periods. It also makes it difficult to maintian a pregnancy and many women with hms/eds experience more miscarriges and problems conceiving.
The heart is another organ that can be affected due to the amount of movement it requires to work. In certain types of Ehlers danlos, the heart can have serious issues such as heart murmers, slow and irregluar heart rates. People with the vascular type of Ehlers Danlos are at great risk of anurysisms and heart failure due to the rupturing of the blood vessels. The same with the brain which can result in stokes.
The skin is another major body part that is affected by hms/eds. In particular it is often very stretchy and soft which makes it more fragile. This makes it prone to tearing very easily and very poor at healing. People with hms/eds often have alot of scars that look like they are from serious injuries when in fact they can be from something as simple as a scratch. The skin also bruises very easily, often from simple things like kneeling on the floor or getting a hug from someone.
Because the joints in hms/eds are very unstable, the muscles around the joints have to do all the work to keep them held together. This means that most of your energy gets used up by the muscles. This means that people with the condition suffer really badly from exhaustion and very poor energy levels. Something as simple as walking up the stairs can exhaust the person so much that they have to lie down for 30mins to recover. This means that alot of people with the condition are also diagnosed with CFS/ME. Having such poor energy levels makes it even harder to do basic tasks such as dressing, washing etc.
For some reason, people with hms/eds are much more prone to alot of other conditions. Some conditions occur for obvious reasons to do with the weakend collagen and energy issues, other conditions occur but don't seem to have an obvious reason why.
The related conditions that people with hms/eds tend to also have include:
Fibromyalgia, flat feet, raynauds syndrome, insommnia, curvature of the spine, kyphosis (a hump at the top of the spine), hernias, neuropathy, carpel tunnel syndrome, premature aging of the skin, strokes, heart murmurs, rheumatoid arthritis, automic dsyfunction (a dysfuntion of the body's ability maintain normal function of systems such as blood pressure) and much more.
Hms/Eds varies massivley in severity. Some people may have very few problems and lead normal lives, able to do the same as people without the condition. At the other end of the scale, some people are seriously affected by the condition resulting in severe disability. They may depend on a wheelchair, they may need help to dress, bathe, change position in bed etc. In some cases, a person with hms/eds may become bedridden for periods of time due to the severity of the condition. People who are effected badly may not be able to work and rely on the help of others to get through the day. And of course in the case of Vascular EDS, the condition can often be fatal.
Because hms/eds is caused by a defect in the collagen fibres, there is currently no cure. Treatment concentrates on keeping the joints as strong as possible to delay the onset of degeneration. Physiotherapy concentrates on building the muscle strength around the joints. Occupational therapy looks at aids that can help make tasks easier.
Pain is a major symptom so becomes the main focus for treatment. Pain in hms/eds is difficult to control becuase it can fluctuate easily. But in alot of cases, medications such as tramadol, codiene and even morphine are used to help manage the pain. It often does not take the pain away but only brings it down to a more mangeble level.
Sometimes surgery is required to stablise joints but this is done less and less now as drs are aware now that operating on a joint just makes the other joints more unstable. Steroid injections are used more and more now to stablies joints by reducing inflamation. Steroids are injected directly into the joint which is extremely painful and doesnt work for everyone.
Other treatment focuses on stablising the joints with splints and braces so a person with the condition may wear various splints on their wrists, elbows, knees and ankles. They may also wear splinted supports to stabalise the spine, hips and shoulders. And of course the related conditions need to be treated. So someone who suffers from the hms affecting their bladder may need to use catherters and incontinence products.
Becuase the joints of a person with hms/eds are so unstable and dislocate so easily, alot of the time they go back into the right position very easily so people with the condition often learn fix to dislocated joints themselves. Sometimes however they do need to go to hospital as a result of a bad dislocation. People who suffer from the effcts of severe hms/eds often spend alot of time in hospital reciving intensive physiotherapy and pain treatment. They often have many drs from different areas such as rheumatology, endochronology, gasteonterology, etc and can have a hosptial appointment every week sometimes more than once a week!
Hms/Eds is becoming more recognised as a seroius condition by drs. Many people with the condition spend years trying to get drs to take them seriously and to get a diagnosis. Even then treatment can be very difficult to get. This is still the case in alot of places and as a result many people with hms/eds have to travel alot to recieve treatment and care from specialists who have more knowledge of the condition. There are currently only around 4 hms/eds clinics in the UK!
One of the biggest problems people with hms/eds face is the lack of understanding from friends, family and collegues. A person with hms/eds may appear to be fine, especially if they can walk. Often a person with hms/eds may be able to do something one day but not the next such as pouring a kettle or walking up the stairs. So it becomes difficult for others to understand just how difficult the condition can be. Even those who use wheelchairs or crutches to walk can experince problems with people not understanding. This can make relationships and friendships difficult and often a person with hms/eds becomes isolated as friends slowly disapear. Often a person with hms/eds has alot of bad days where they are unable to get out of bed or to go out. This means that friends often only see them on a good day so they then think that this is how the person is all of the time. They often don't comprehend how bad the bad days are.
Hms/Eds is a very complex condition that can affect the person's life in many ways. The condition often affects social and work life and can even greatly affect quality of life. Becuase of the massive range of issues the condition causes, people with hms/eds often struggle with many things that others take for granted. The lack of understanding of the condition and due to how it can fluctuate on a daily basis leads to the person finding it difficult to maintain friendships and to recieve emotional support from others.
This blog is intended to allow people to understand the daily issues living with hms/eds causes. It also is intended to highlight the strength and determination people with the condition have to get on with their lives and the ongoing fight they have to recieve appropriate treatment, and more importantly, understanding.
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