For most people a visit to the gp is a quick 5-10min job to have a sore throat or upset stomach checked out.
For people with Ehlers Danlos and other multi-system conditions it’s a mammoth task that needs preparation and the ability to keep it together under pressure better than a politician on a pre-election live TV debate!
Quite often you don’t just have one thing you need to see the gp about, there’s a list. You have a new pain or symptom that needs attention, you need a referral to a new specialist or refferred back to a previous one because an old problem has reamerged. You need one of your medications looked at because its interacting with another and causing problems. You need your ribs checking because you dislocated them badly sneezing, oh and that reminds you, can you please have the flu jab you made the appointment for in the first place!
Its no surprise that your gp is stressed and flustered by the end and you are almost in tears.
You are half way home and realise you forgot to ask for a months supply of pain medication and your gp has forgotten you wanted referring to another specialist so you have to chase him up about it in a few months time when you realise the referral hasn’t been done.
GP appointments don’t have to be like this. Your gp is your front line guy, the one in charge of your medical care and the guy you HAVE to have on your side right from the start.
Your gp and you should be a team working together not at loggerheads fighting and dreading every meeting.
Quite often I hear about EDSers having gps who started out ok but then they start having problems and eventually they have to move on and find another:
“He used to be really patient with me and very understanding. He would really listen to my concerns and always refer me to the specialists I needed. Now he rolls his eyes when I walk in his office and I’m having a hard time getting him to re-evaluate my pain medication”
I myself am having similar problems. My gp was very patient with me and never questioned my requests for referrals or treatments. The past few appointments however have had me in tears and him not making any changes to my medications. Iv even been told I can’t be referred to an essential specialist for my GI issues and have to stay within my local PCT when he said previously he would refer me to the specialist once my rheumatologist gave him the nod.
I understand where I have gone wrong though and caused my own problems. I’ve learnt through my own mistakes what needs to be done to ensure the best chance of having a good gp appointment.
I have now found a great female dr in the same practice which works even better for me as I can talk about the more sensitive female issues of the condition and be physically examined easily rather than the previous dr going on what symptoms I am describing alone.
So how do you give yourself more chance of a good appointment?
Here are a few tips…
1) Prepare, Prepare, Prepare.!! It’s almost like what teachers would say to you getting ready for a big exam. ‘The more you prepare and revise the easy the exam is. And the same is true for dr appointments.
If you just turn up to the appointment wanting to try new pain medication but don’t have any ideas which ones your gp has to work out which ones might be suitable for your condition, and that’s when he’s figured out if its for muscular pain, neurological pain, joint pain etc. If you have gone to EDS forums or asked other EDSers what pain meds are popular for EDS, work well and have little side effects you can suggest these to your gp who then has just a couple to choose from rather than hundreds for you to try.
Another example…you are having a lot of stomach problems and you know that this is related to EDS and you need reffereing to a gastroentologist to get it checked out. You just turn up to the appointment and say ‘I need reffereing to a GI dr’. Your gp has no idea if any of the GI specialists in the local area have even heard of EDS never mind know how to treat the GI issues. And that’s if your gp even understands this side of EDS. If you look into this yourself before the appointment you can find out what GI issues can occur in EDS, why they do, what causes them and what type of GI dr you need(functional GI, Neuro GI, etc) what tests you require if you gp can refer you straight for these (colonoscopy, slow transit, bariem xray etc).
2) Book yourself a double appointment if you have more than one (or 2 simple) issues to discuss. A single appointment is usually between 5mins and at most 7mins. Giving you both at least 10mins gives you more time so you can discuss things in full and not be rushed.
3) Write a list of the things you want to discuss. You can either hand this to your gp at the appointment or refer to it yourself. You can write notes next to the items on the list if you need to such as side effects of the medication you want reviewin, hospital details if you are asking for a referral, brief history of what happened and symptoms if you are wanting a injury looked at.
At the end of the appointment you can go down the list quickly to make sure you have covered everything.
4) Take a notebook and pen to write things down. When you have a lot of things to ask your dr he will have a lot of things to say in return. Its most likely by the time you get home you may have forgotten the correct dosage for your new medication or the name of the condition he mentioned they wanted you tested for because of your new symptoms. You can also ask your gp to write down names of over the counter medicatoin they recommend or website links etc.
5)Always take some information leaflets on EDS/HMS You can hand them one and say ‘I just wanted to give you this in case you wanted to look into anything specific on EDS or want to pass some support info on to someone else’
It’s a sneaky way of making sure they have information on your condition in case they know less than they let on. Support organisations tend to provide much better information on EDS than medical journals in terms of living with the condition so it will also provide your gp with information should they be asked to provide evidence for your disability benefit assessments.
6)If you don’t already have it, get Dr Brad Tinkle’s book ‘Joint Hypermobility Handbook’ A guide for the issues & management of Ehlers Danlos Syndrome hyper mobility type and the hypermobilility syndrome’ It covers pretty much every part of the body affected by EDS and is laid out simply and straight to the point. I take this book to all my appointments so that if I need to I can give my dr the relevant page/paragraph to quickly skim over. It also provides web links for further reading.
7)Don’t be afraid to challenge your dr. but don’t over challenge! If they are dismissing your concerns or putting an issue down to something else eg loss of appetite or digestive system problems down to depression or weight concerns, don’t confirm their lack of understanding by submitting to them.
Stand your ground if you believe your EDS is causing issues and needs looking into.
Researching any new issues before your appointment and being prepared will really help you here, especially if you can provide some printouts from the internet or a relevant page from Tinkle’s book.
‘Im sorry but I know this isn’t depression. EDS does cause problems with appetite and eating. Here in Dr Tinkle’s book its says about early satiety’.
If they still don’t take it seriously and still put it down to something other than EDS don’t get into an argument. You need a good relationship with your dr. Drs don’t often like it when the patient knows more than them so you have to handle it correctly. Something like..
‘OK,I know this isn’t depression. It is EDS causing this. But I don’t want to ruin our good relationship we have built up over it. Can we come to an agreement that if things haven’t improved in 2 weeks/a month we look at it again?’
You might face the issue of a stubborn dr like many of us have at times but if you are politely assertive rather than angry and argumentative you have much better chance of winning.
I’v had 2 appointments recently with different drs where I’v had to really stand my ground and fight. 1 eventually gave in after 20mins of telling me I was wrong, my body wasn’t doing what I was saying it was and that my medication hadn’t stopped working because of interaction from another. He was so assertive that he had ME convinced I was wrong! But I stood my ground calmly without it turning into a argument or battle of wills. I just kept saying ‘but how come I am experiencing this symptom if my body is supposedly not doing that?’, ‘can you explain again how my medication can still be working if I am experiencing this?’ etc.I asked them genuinely not ‘well explain this to me then clever clogs!’
Eventually he couldn’t explain it and had to quickly research my medication and discovered I was actually right (by this point I was convinced he was right and I was wrong!).
The other appointment I had where I had to challenge a dr was when my gp refused to believe my loss of appetite was related to my EDS. He believed it was to do with depression and being worried about weight. He just kept saying ‘Why are you telling me you are worried you can’t eat, just eat. Its not hard, put something in your mouth and swallow it’. If you are depressed you loose your appetite but you just have to force yourself, you are going to make yourself ill if you don’t eat’.
I didn’t win that one because I ended up in tears.
Keep your cool, keep collected but be prepared to loose some battles. You just have to go back and try again another time.
DO NOT PUT YOURSELF AT RISK HARM
If you believe something is seriously wrong and needs urgent attention and your gp is not taking it seriously see if you can get an appointment with another gp at the surgery. Otherwise you can go to a NHS walk-in clinic and ask to be seen by the on duty dr or go to A&E department.
8) Be honest with your gp. If you don’t want to be referred for physic say so. If you are unhappy with how your last appointment went, tell him. Your gp will appreciate your honesty.
9) Always be prepared for the appointment not to go how you expect. What will you say if your gp says he won’t refer you to the specialist you want to see? What are the other options of medication if he says you can’t have the one you wanted because it interacts with others you are on?
10)Drs are people too and have bad days like the rest of us. Sometimes that means you can be in the firing line and this can result in a disastrous appointment through no fault of your own.
For example my last appointment with my gp went something like this…
I enter the room, he’s sat at his desk not waiting at his door like usual. He’s red in the face and not smiling like normal. it’s a few days after I was admitted to hospital overnight after a faint and concerns from an on-duty Consultant of possible POTS(postural orthostatic tachycardia syndrome) resulting from my EDS.
I have my discharge letter which asks my gp to do regular monitoring of my heart rate and blood pressure and recommends a referral to a vascular specialist if I have another fall for Tilt Table testing (standard POTS test). It also says Iv been referred for an endoscopy due to concerns for my loss of appetite and swallowing difficulties. The on-duty dr tells me to see my gp as soon as I can to discuss his recommendations and ask again for a referral to the GI specialist who specialises in EDS.
My gp asks what I want. I tell him I was admitted to hospital after a fall and Iv come with the discharge note to discuss the recommendations. He has a quick read and says ‘I don’t understand, what do you want me to do?’
I tell him that the dr thinks I may have POTS and wants my blood pressure and heart rate monitored regularly and a referral to the vascular specialist If I faint again.
He replies ‘whats POTS, Iv never heard of that, is that just fainting or something? I’m not going to do your bp and heart rate, what do I need to do that for you fainted cos you’re not eating. Just stop being silly and eat. Of course you will pass out if you don’t eat.’
I am just staring at him in shock as this is totally out of character.
He continues ‘Are you worried about your weight is that why you’re not eating?
Im crying at this point so he shoves a box of tissues towards me and rolls his eyes.
That was one of the worst appointments Iv had and it was with a gp who I’v had nearly 3 years of brilliant support from. It just goes to show that drs can have really awful days too and unfortunately we sometimes get caught up in the firing line.
You have to just accept it was a bad appointment, cut your losses and go home.
Be polite as you leave. Don’t get angry or react to his bad attitude. Thank him for his time, smile and hold it together until you are out of his door.
Try not to let it affect you and especially don’t give up any of the concerns or requests you had.
Simply make another appointment at a later date if you feel you just caught him on a bad day or think about trying a different gp at the same surgery if you can.
Sometimes we can only go so far with a dr before we have to move on.
GP appointments for people with EDS can be quite an ordeal, they can be like doing a round of ‘Weakest Link’ with Anne Robinson or they can be like popping round a friends house for a cuppa and catch-up.
Whatever type of appointments you have remember your gp is crucial to your medical care so preparing well for your appointment and working as a team, not against them is how to have a good appointment.
cx
Tuesday, 18 January 2011
Sunday, 9 January 2011
GI Joe!...the unrelentless gastric EDS soldier
Gastroenterology is a word that many with EDS become fluent in rolling off their tongues. Secondary to joint instability, the digestive system can be the most problematic system in the EDS body for some.
It is now becoming more accepted amongst the sceptic medics that EDS, or Hypermobility Syndrome is more than just 'being bendy' because of this increased awareness of the severity of GI complications in EDS patients.
The GI system, or digestive tract, is one long tube made up of lots of rings of muscle. You put food in your mouth, chew then swallow. The food enters this tube of muscular rings where it is squeezed down the tube by the muscles contracting in turn. It is kind of like when you are trying to squeeze the last blob of toothpaste out of a tube.
In an EDS affected digestive tract the muscles loose their tightness as the collagen breaks down. When they do squeeze they don't do so enough to push the food along. The food then is then simple passed through the system too slowly. In extreme cases the system may not be able to move, or function enough to tolerate solid foods.
When food reaches the stomach it can take an EDS stomach longer to do its job or it can not work as well by thinking it is already full. This causes mixed signals so that the person thinks they are full or is unable to eat decent amounts of food. It can also take the stomach longer to empty. The top of the stomach might not close properly making the contents come back up into the oesophagus or the stomach (reflus) or in extreme cases, fails completely and is unable to digest solid food at all. In this case it is sometimes necessary for the person to have a PEG or GI tube fitted so they can be fed directly into their stomach.
When the food finally leaves the stomach it enters the small and large intestine (or bowel). Here it is passed along using the same muscular method. This time squeezing the food along while digesting absorbs nutrients and water and turns the food into stools (faeces) ready to be eliminated from the body.
In someone with EDS that affects this part of the system, the muscle weakness can cause slow transit, constipation, ibs, cramps, pain, and in severe cases the bowel can become unable to move the waste along at all. Finally the rectum and anal muscles can be affected which can cause incontinence or inability to expel stools.
In the severe end of the lower GI symptoms the results can lead to the person requiring irrigation treatment (inserting catheters into the rectum to fill the bowel with water to flush the lower GI system. When the top part of the lower GI system becomes affected the irrigation is sometimes done through a tube that is surgically inserted through the upper adomen wall). If irrigation fails then the bowel is removed and a stoma (colostomy/illiostomy) is placed. This is in rare circumstances when the bowel no longer functions at all.
Usually if a person is affected badly in their lower GI system they may require very large doses of regular laxatives.
Other GI issues not caused by muscle weakness in EDS can include fool allergies an intolerances, hiatus hernia (where the stomach comes up into the chest cavity), pelvic organ prolapse (where parts of the pelvic organs including the bowel collapse into the pelvic floor), rectum prolapse (part of the bowel falls out of the body through the anus), severe and chronic acid reflux, constant nausea and vomiting.
The majority of people with EDS who have GI problems will only have the milder end of symptoms that can be managed with diet or medication. However it is becoming more recognised now that the GI problems that were once thought to be unrelated are caused by EDS or the Autonomic Dysfunction that EDS patients also tend to have.
I have always have lower GI problems since birth. I suffered from slow transit and a number of impacted bowels as a child.
I have been using irrigation treatment for over a year now which is no longer really effective. My bowel has started to collapse in areas which causes immense pain and blockages that make the irrigation even less effective.
I was very lucky to meet a neurogastoentologist who has taken an interest in EDS patients. He believed at the time that the upper abdomen tube to irrigate through could be an option before bowel removal however it has taken nearly 6 months to convince my GP to refer me to him. My lower GI problems are much worse now but I hope that this is still an option by the time I finally get to his clinic.
I also have upper GI problems now. Mainly I have no appetite now. When I do force myself to eat I can only manage very small amounts and the food takes its time getting down into my stomach. I sometimes have a hard time swallowing and can feel and hear 'clunking' in my oesophagus when I have to gently squeeze and rub my neck to encourage the food down.
I had an endoscopy last week to check for anything none-EDS. I am very scared of my upper GI system failing in the way my lower system hasso I was hoping they would find something non-EDS that is easy to treat. However all they found was some inflammation in my stomach which could be caused by a bacteria they also found. Neither of which would cause my symptoms.
It looks likely that my upper GI symptoms are EDS, particually muscle weakness.
I have a couple of friends with EDS who have serious GI problems. One has the hypermobile form of the condition like me, the other has the vascular. Both have feeding tubes and have had their bowel removed.
I have lots of other eds friends who have GI problems but none have got to needing irrigation treatment or it failing like me.
It does worry me that I may be coming close to the end of the line with options in terms of what can be done for my GI problems.
This issue of my blog was intended to raise awareness of just SOME of the GI issues that can happen with EDS. I hope that it has helped others understand just how serious this part of the condition can get and encourage those with EDS who are experiencing GI problems to look into this area and ensure that your Dr understands that your GI issues could be due to your EDS and should not be ignored.
It is now becoming more accepted amongst the sceptic medics that EDS, or Hypermobility Syndrome is more than just 'being bendy' because of this increased awareness of the severity of GI complications in EDS patients.
The GI system, or digestive tract, is one long tube made up of lots of rings of muscle. You put food in your mouth, chew then swallow. The food enters this tube of muscular rings where it is squeezed down the tube by the muscles contracting in turn. It is kind of like when you are trying to squeeze the last blob of toothpaste out of a tube.
In an EDS affected digestive tract the muscles loose their tightness as the collagen breaks down. When they do squeeze they don't do so enough to push the food along. The food then is then simple passed through the system too slowly. In extreme cases the system may not be able to move, or function enough to tolerate solid foods.
When food reaches the stomach it can take an EDS stomach longer to do its job or it can not work as well by thinking it is already full. This causes mixed signals so that the person thinks they are full or is unable to eat decent amounts of food. It can also take the stomach longer to empty. The top of the stomach might not close properly making the contents come back up into the oesophagus or the stomach (reflus) or in extreme cases, fails completely and is unable to digest solid food at all. In this case it is sometimes necessary for the person to have a PEG or GI tube fitted so they can be fed directly into their stomach.
When the food finally leaves the stomach it enters the small and large intestine (or bowel). Here it is passed along using the same muscular method. This time squeezing the food along while digesting absorbs nutrients and water and turns the food into stools (faeces) ready to be eliminated from the body.
In someone with EDS that affects this part of the system, the muscle weakness can cause slow transit, constipation, ibs, cramps, pain, and in severe cases the bowel can become unable to move the waste along at all. Finally the rectum and anal muscles can be affected which can cause incontinence or inability to expel stools.
In the severe end of the lower GI symptoms the results can lead to the person requiring irrigation treatment (inserting catheters into the rectum to fill the bowel with water to flush the lower GI system. When the top part of the lower GI system becomes affected the irrigation is sometimes done through a tube that is surgically inserted through the upper adomen wall). If irrigation fails then the bowel is removed and a stoma (colostomy/illiostomy) is placed. This is in rare circumstances when the bowel no longer functions at all.
Usually if a person is affected badly in their lower GI system they may require very large doses of regular laxatives.
Other GI issues not caused by muscle weakness in EDS can include fool allergies an intolerances, hiatus hernia (where the stomach comes up into the chest cavity), pelvic organ prolapse (where parts of the pelvic organs including the bowel collapse into the pelvic floor), rectum prolapse (part of the bowel falls out of the body through the anus), severe and chronic acid reflux, constant nausea and vomiting.
The majority of people with EDS who have GI problems will only have the milder end of symptoms that can be managed with diet or medication. However it is becoming more recognised now that the GI problems that were once thought to be unrelated are caused by EDS or the Autonomic Dysfunction that EDS patients also tend to have.
I have always have lower GI problems since birth. I suffered from slow transit and a number of impacted bowels as a child.
I have been using irrigation treatment for over a year now which is no longer really effective. My bowel has started to collapse in areas which causes immense pain and blockages that make the irrigation even less effective.
I was very lucky to meet a neurogastoentologist who has taken an interest in EDS patients. He believed at the time that the upper abdomen tube to irrigate through could be an option before bowel removal however it has taken nearly 6 months to convince my GP to refer me to him. My lower GI problems are much worse now but I hope that this is still an option by the time I finally get to his clinic.
I also have upper GI problems now. Mainly I have no appetite now. When I do force myself to eat I can only manage very small amounts and the food takes its time getting down into my stomach. I sometimes have a hard time swallowing and can feel and hear 'clunking' in my oesophagus when I have to gently squeeze and rub my neck to encourage the food down.
I had an endoscopy last week to check for anything none-EDS. I am very scared of my upper GI system failing in the way my lower system hasso I was hoping they would find something non-EDS that is easy to treat. However all they found was some inflammation in my stomach which could be caused by a bacteria they also found. Neither of which would cause my symptoms.
It looks likely that my upper GI symptoms are EDS, particually muscle weakness.
I have a couple of friends with EDS who have serious GI problems. One has the hypermobile form of the condition like me, the other has the vascular. Both have feeding tubes and have had their bowel removed.
I have lots of other eds friends who have GI problems but none have got to needing irrigation treatment or it failing like me.
It does worry me that I may be coming close to the end of the line with options in terms of what can be done for my GI problems.
This issue of my blog was intended to raise awareness of just SOME of the GI issues that can happen with EDS. I hope that it has helped others understand just how serious this part of the condition can get and encourage those with EDS who are experiencing GI problems to look into this area and ensure that your Dr understands that your GI issues could be due to your EDS and should not be ignored.
Sunday, 26 December 2010
End of 2010, where I'm at.
Its been quite a year bendy-wise.
I thought I'd do a quick recap just to see how far I'v come in just one year.
Jan-Mar
*Xrays and Mri of spine show curvature of spine and degeneration of SI joints :(
*Assessed for my 1st wheelchair - sad times.
*Start investingations for Crohns Disease - come back clear - Yey!
*GI dr and EDS dr discover my Gastointestinal system is now affected by EDS.
*Reffered to endocronologist for suspected thyroid damage from medication
*Begin physio and Occupational Therapy at Leeds.
April-June
*Recieve my wheelchair. Amazed how much freedom I now have. :)
*Getting physio back at hartlepool. knees and hips getting weaker. Walking less.
*GI nurse and EDS dr agree lower GI system failing. :(
Start wearing ankle splints and hip belt to help walking.
*Using wheelchair indoors at least 3 times a week now. Standing becoming difficult.
*Pain med review no.8
July-Sep
*Pain becomes much worse.
*Pain meds review no.9. Introduce Neuropathic pain medication
*Start working with new physio who is keen to learn about EDS
*Try accupuncture for pain which triggers major pain flare
*Reffered for hydrotherapy
*Stomach gets symptomatic. Begin part-liquid diet.
Oct-Dec
*Begin Hydrotherapy with great success. Pain reduced and core stability improved.
*Major hip dislocation trigging escalating hip and pelvis instability
*Hip continues to dislocate and subluxate evenutally causing impingement and nerve damage.
*Referred to Orthopaedic surgean for both hips.
*Walking deteriates to point of needng chair outdoors full time and indoors most days. Unable to self-propel outdoors and sometimes indoors. Refferd for powerchair assessment.
*Begin fainting and admitted overnight after paramedics called after bad fall. Blood pressure very low and heart rate topping 143bpm when standing and 110 sitting. Dr on duty suspects Postual Orthostatic Tachychardia Syndrome. Rheumy agrees continueing readings and symptoms suggest autonomic dysfunction and requests further tests with possible reffereal for POTS testing.
*Rheumy requests refferal to Prof Aziz in london for GI isssues
*Endoscopy booked for 5th January for upper GI issues.
*Reffered to pain clinic.
Looking back its clear in which direction my EDS is heading for now. However I have found that even though my condition may have become worse over the past few months, my abiltiy to cope with it and the amount it affects my ability to get on with my life is very differnt to what it was at the begining of the year.
I wish all my blog readers and fellow EDSers a wonderful and healthy 2011!
cx
I thought I'd do a quick recap just to see how far I'v come in just one year.
Jan-Mar
*Xrays and Mri of spine show curvature of spine and degeneration of SI joints :(
*Assessed for my 1st wheelchair - sad times.
*Start investingations for Crohns Disease - come back clear - Yey!
*GI dr and EDS dr discover my Gastointestinal system is now affected by EDS.
*Reffered to endocronologist for suspected thyroid damage from medication
*Begin physio and Occupational Therapy at Leeds.
April-June
*Recieve my wheelchair. Amazed how much freedom I now have. :)
*Getting physio back at hartlepool. knees and hips getting weaker. Walking less.
*GI nurse and EDS dr agree lower GI system failing. :(
Start wearing ankle splints and hip belt to help walking.
*Using wheelchair indoors at least 3 times a week now. Standing becoming difficult.
*Pain med review no.8
July-Sep
*Pain becomes much worse.
*Pain meds review no.9. Introduce Neuropathic pain medication
*Start working with new physio who is keen to learn about EDS
*Try accupuncture for pain which triggers major pain flare
*Reffered for hydrotherapy
*Stomach gets symptomatic. Begin part-liquid diet.
Oct-Dec
*Begin Hydrotherapy with great success. Pain reduced and core stability improved.
*Major hip dislocation trigging escalating hip and pelvis instability
*Hip continues to dislocate and subluxate evenutally causing impingement and nerve damage.
*Referred to Orthopaedic surgean for both hips.
*Walking deteriates to point of needng chair outdoors full time and indoors most days. Unable to self-propel outdoors and sometimes indoors. Refferd for powerchair assessment.
*Begin fainting and admitted overnight after paramedics called after bad fall. Blood pressure very low and heart rate topping 143bpm when standing and 110 sitting. Dr on duty suspects Postual Orthostatic Tachychardia Syndrome. Rheumy agrees continueing readings and symptoms suggest autonomic dysfunction and requests further tests with possible reffereal for POTS testing.
*Rheumy requests refferal to Prof Aziz in london for GI isssues
*Endoscopy booked for 5th January for upper GI issues.
*Reffered to pain clinic.
Looking back its clear in which direction my EDS is heading for now. However I have found that even though my condition may have become worse over the past few months, my abiltiy to cope with it and the amount it affects my ability to get on with my life is very differnt to what it was at the begining of the year.
I wish all my blog readers and fellow EDSers a wonderful and healthy 2011!
cx
New Rheumy, New hope?
I recently saw my new EDS rheumy(rheumatologist)
For people with EDS, the rheumy is the top of the food chain when it comes to our long list of drs and medical professionals we see regularly.
He is the guy who is the EDS expert, the one who understands what EDS is, how it works and how it affects our different body systems...that's when we are lucky enough to finally find a rheumy who specialises in EDS!
The EDS rheumy is the wedding planner of our medical care. He coordinates all the other drs, decides what should and shouldn't happen and pulls all the other drs' tests, work and ideas together to get a full picture of what is going on in the EDS body. He then rolls out orders to the GP (family dr) to refer the eds patient to new specialists if needed, order more tests, start new or change current treatments and keep him up to date with what is going on. He will also contact other specialists working with the eds patient either directly or through the GP to discuss current treatment with the aim to either stop proposed treatment/surgery (an orthopaedic surgeon may think ligament tightening surgery will stop a joint dislocating but a EDS specialist may suspect that it will not with this patient), suggest treatment or avenues of investigation the other specialist hasn't thought of, or simply just to keep uptodate or create a new network with the specialist for future patients.
My previous EDS rheumy was one of the country's (and world's) leading EDS/HMS experts. Professor Howard Bird has made some of the most important discoveries and moved the research and treatment of eds/hms forward massively since he began taking a special interest in the condition in his early career.
His retirement shook the eds/hms community and the proposed closure of the specialist clinic that he had set up in Leeds, UK was feared.
I had been lucky enough to have been a patient of Prof Bird for 1 year before his retirement. Although I had received my diagnosis in 2007 I hadn't received any real treatment so was finally refereed to Prof Bird in December 2009 where I received a thorough assessment. It is here I found out how bad my body was affected, how much my joints had deteriorated due to lack of treatment and how I had developed scoliosis (curvature of the spine) and osteoarthritis of the SI joints (where the spine meets the pelvis.
It was also Prof Bird who noticed the obvious EDS characteristics in my Mum and due to taking such a detailed family history we discovered that both my parents had the EDS gene. My mother very affected, my dad only mildly. My mum has since gone on to receive treatment for pain and physio and is now waiting her initial appointment with my new rheumy.
So back to my new eds rheumy.
I had been given his details before my final appointment with Prof Bird by a fellow member of the Hypermobility Association (HMSA) who recommended him highly. I knew that with Prof Bird's upcoming retirement I would have to find a new rheumy experienced in EDS.
I was told Dr S. was a great dr and Prof B agreed that he would be the best rheumy for me.
My 1st appointment couldn't have gone better. Dr S. and his staff were very welcoming and pleasent and it didnt take long for me to relax and laugh at an unfortunate gramatical error on a recent discharge note with him.
We covered my current EDS issues, mainly my ongoing gastointestinal deteriation and
a new set of symptoms that some drs are suspecting could be indicative of Postural Orthostatic Tachychardia Syndrome (POTS), a form of Dysautonomia that can occur in EDS (see links at bottom for info on POTS)
I was in with Dr S for over an hour! I had to apologise profusely to the lady following me but she didnt mind 'at least he's thorough' she said. That he certainly is.
I then had lots of bloods taken.
I received a copy of the letter Dr S wrote to my gp within days.
He has requested a referral to Prof Aziz in London for my GI issues with a referral to a local GI consultant with knowledge of EDS for long term monitoring.
He has also requested that I have a number of tests done before I see my endocrinologist at the end of January. These are to look for other causes of my dropping blood pressure and raised heart rate that suggest POTS just in case.
Finally Dr S has requested copies of all correspondence from physio, orthopedics, pain clinic, endocrinology, past GI investigation and recent xrays, mri (hips and spine) and an endoscopy I am due to have next week. (To see if there is anything non-EDS causing my upper GI symptoms).
I will not be having regular follow-up appointments with Dr S as I already spend at least 1 day a week at hospital with appointments. Plus Dr S is trying to set up a eds/hms clinic and it is not financially viable to offer regular follow-up appointments to all patients.Instead Dr S said I can phone up and ask for an appointment if I have any serious issues or I can arrange a phone appointment.
I am looking forward to seeing the eds/hms clinic taking off with Dr S as it is very much needed in the North East of England.
Dr S admits he may not have the knowdlege and expertise of Prof Bird, after all he is only young and just starting his work with eds/hms patients, but he is very open and the most important thing is that unlike some drs, he will take the patient's suggestions and concerns when deciding on appropriate progression of treatment.
I am really looking forward to working with my new rheumy for the coming future and hope that as one of his patients that he will learn something from me.
links for further info :
Postural Orthostatic Tachychardia Syndrome (POTS) - http://www.dinet.org/pots_an_overview.htm
For people with EDS, the rheumy is the top of the food chain when it comes to our long list of drs and medical professionals we see regularly.
He is the guy who is the EDS expert, the one who understands what EDS is, how it works and how it affects our different body systems...that's when we are lucky enough to finally find a rheumy who specialises in EDS!
The EDS rheumy is the wedding planner of our medical care. He coordinates all the other drs, decides what should and shouldn't happen and pulls all the other drs' tests, work and ideas together to get a full picture of what is going on in the EDS body. He then rolls out orders to the GP (family dr) to refer the eds patient to new specialists if needed, order more tests, start new or change current treatments and keep him up to date with what is going on. He will also contact other specialists working with the eds patient either directly or through the GP to discuss current treatment with the aim to either stop proposed treatment/surgery (an orthopaedic surgeon may think ligament tightening surgery will stop a joint dislocating but a EDS specialist may suspect that it will not with this patient), suggest treatment or avenues of investigation the other specialist hasn't thought of, or simply just to keep uptodate or create a new network with the specialist for future patients.
My previous EDS rheumy was one of the country's (and world's) leading EDS/HMS experts. Professor Howard Bird has made some of the most important discoveries and moved the research and treatment of eds/hms forward massively since he began taking a special interest in the condition in his early career.
His retirement shook the eds/hms community and the proposed closure of the specialist clinic that he had set up in Leeds, UK was feared.
I had been lucky enough to have been a patient of Prof Bird for 1 year before his retirement. Although I had received my diagnosis in 2007 I hadn't received any real treatment so was finally refereed to Prof Bird in December 2009 where I received a thorough assessment. It is here I found out how bad my body was affected, how much my joints had deteriorated due to lack of treatment and how I had developed scoliosis (curvature of the spine) and osteoarthritis of the SI joints (where the spine meets the pelvis.
It was also Prof Bird who noticed the obvious EDS characteristics in my Mum and due to taking such a detailed family history we discovered that both my parents had the EDS gene. My mother very affected, my dad only mildly. My mum has since gone on to receive treatment for pain and physio and is now waiting her initial appointment with my new rheumy.
So back to my new eds rheumy.
I had been given his details before my final appointment with Prof Bird by a fellow member of the Hypermobility Association (HMSA) who recommended him highly. I knew that with Prof Bird's upcoming retirement I would have to find a new rheumy experienced in EDS.
I was told Dr S. was a great dr and Prof B agreed that he would be the best rheumy for me.
My 1st appointment couldn't have gone better. Dr S. and his staff were very welcoming and pleasent and it didnt take long for me to relax and laugh at an unfortunate gramatical error on a recent discharge note with him.
We covered my current EDS issues, mainly my ongoing gastointestinal deteriation and
a new set of symptoms that some drs are suspecting could be indicative of Postural Orthostatic Tachychardia Syndrome (POTS), a form of Dysautonomia that can occur in EDS (see links at bottom for info on POTS)
I was in with Dr S for over an hour! I had to apologise profusely to the lady following me but she didnt mind 'at least he's thorough' she said. That he certainly is.
I then had lots of bloods taken.
I received a copy of the letter Dr S wrote to my gp within days.
He has requested a referral to Prof Aziz in London for my GI issues with a referral to a local GI consultant with knowledge of EDS for long term monitoring.
He has also requested that I have a number of tests done before I see my endocrinologist at the end of January. These are to look for other causes of my dropping blood pressure and raised heart rate that suggest POTS just in case.
Finally Dr S has requested copies of all correspondence from physio, orthopedics, pain clinic, endocrinology, past GI investigation and recent xrays, mri (hips and spine) and an endoscopy I am due to have next week. (To see if there is anything non-EDS causing my upper GI symptoms).
I will not be having regular follow-up appointments with Dr S as I already spend at least 1 day a week at hospital with appointments. Plus Dr S is trying to set up a eds/hms clinic and it is not financially viable to offer regular follow-up appointments to all patients.Instead Dr S said I can phone up and ask for an appointment if I have any serious issues or I can arrange a phone appointment.
I am looking forward to seeing the eds/hms clinic taking off with Dr S as it is very much needed in the North East of England.
Dr S admits he may not have the knowdlege and expertise of Prof Bird, after all he is only young and just starting his work with eds/hms patients, but he is very open and the most important thing is that unlike some drs, he will take the patient's suggestions and concerns when deciding on appropriate progression of treatment.
I am really looking forward to working with my new rheumy for the coming future and hope that as one of his patients that he will learn something from me.
links for further info :
Postural Orthostatic Tachychardia Syndrome (POTS) - http://www.dinet.org/pots_an_overview.htm
Thursday, 2 December 2010
EDS Awareness video. Get involved!
I am currently about to embark on a project I hope will help raise awareness of EDS, not only of the medical side of the condition, but also of the people it affects.
There are many videos on youtube that aim to raise awareness of medical conditions, including EDS. However they tend to either focus on the medical information OR offer a personal insight of someone living with EDS.
I aim to create a film that not only gets the medical information across but also shows the personal effect of the condition on many people, not just myself.
I hope that this film will offer a current and unique insight into the condition that can be shared with family members, friends and collegues. My ultimate aim would be that the film could be used as an awareness tool by EDS/HMS organisations to get across to medical professoinals, social care providers, schools and employers how EDS effects life day-to-day and the emotional wellbeing of the EDSer.
So I want to do the best job I can and to do this I need your help!
One of the biggest hurdles people face when trying to get drs to understand eds is that often the condition is seen as a 'one glove fits all'. That is that a hip joint of one EDSer will look pretty much the same as another EDSer. We know this is so far from the truth and that EDS never looks the same, not only from person to person but even for the same person the condition can change how it looks over time.
Its also a misconception that ALL EDSers have stretchy skin. I for one do not have stretchy skin despite having such severe EDS effects elsewhere.
Finally most EDS awareness information focus on the more common effects (loose joints, stretchy skin etc) but so many of us have serious digestive issues, related conditions such as POTS and crossovers between the different EDS subtypes.
I want to get these things across as much as possible. This film is not about repeating the same information that is already out there but is to dispell myths and start talking about the less common issues.
To help me do this I need photos, video clips, audio clips, quotes, etc.
Can you help?
Here is what I need:
Photos/video clips
*splints/mobility aids/medical devices such as TENS machines,
*GI treatment inparticular feeding tubes,irrigation systems, liquid diets, food intolerance, blending your food for liquid diets, bloating, GI surgery photos (scars, recovery etc)
*EDS skin - stretchy, super stretchy, non-stretchy, bruises, scars (typical eds scars and non-eds typical scaring), nodules, stretchmarks, poor wound healing, stitches/sutres pictures, visible veins/transparent skin/non transparent skin
*joint deformity - from reccurent dislocations, scarring etc
*actual dislocations, subluxations, sprains, other joint/bone injuries
*Spine - curvatures, kyphosis, fusion surgery, braces, flexibilty
*xrays - obvious eds xray abnomality and 'normal looking' xrays.
*baby and young children - floppy baby pics/clips, bum shuffling, late walking, clumsiness, easy bruising, easy injuries.
*fatigue/exhaustion - stuck in bed, looking exhausted, floppy/weak limbs, clips of trying to talk with brain fog etc
I also want to get across that we are still people 1st and EDS 2nd so photos and videos of :
*celebrating milestones - birthdays, weddings, births, graduation etc
*family snaps, holiday snaps, having fun.
*Smiling and happy pictures of old and young.
*Pictures of the emotionally hard days.
*adapting normal situations to eds eg birthday celebrations in hospital, taking the kids to school on your scooter etc
I will also be using audio clips of quotes, thoughts and readings from EDSers rather than just having lots of text to read. For this I need voice recordings or video clips that I can extract the audio from.
Audio needed
*What does EDS mean to you?
*What are your worries about the future/hopes for the future?
*What bad experiences have you had re drs, schooling, general public,
*What gets you through the bad days?
*Quotes, mottos or something someone has said that changed your outlook or is your daily EDS mantra?
I would love to have some audio clips from EDS kids too. Even something simple like 'My legs hurt' or 'I want to play with my friends' etc Also audio clips from kids of EDS parents such as 'I help mum by...' etc
I would also like to have people reading some of the information in the film rather than having lots of text to read. I need people to volunteer to record themselves reading from a script once it is written. Again I want to get across the vast range of people this condition affects so if you have a child who could read a line or two, even a young child who could repeat a few words etc.
Finally if you have a video blog on EDS that you would be willing to let me use clips from that would be great.
This project will take a while to complete but I hope that the time and effort people contribute will be reflected in a film that is unlike any other EDS awareness material currently out there.
If you would like to be involved in anyway please email the project email livingbendy@gmail.com
If you send photos, video clips or audio clips please include your full name, age and location so I can credit you.
If you would like to be part of the script recording please email and I will contact you once the script is ready to be recorded.
Finaly if you have any other ideas please email or comment below.
Email - livingbendy@gmail.com
There are many videos on youtube that aim to raise awareness of medical conditions, including EDS. However they tend to either focus on the medical information OR offer a personal insight of someone living with EDS.
I aim to create a film that not only gets the medical information across but also shows the personal effect of the condition on many people, not just myself.
I hope that this film will offer a current and unique insight into the condition that can be shared with family members, friends and collegues. My ultimate aim would be that the film could be used as an awareness tool by EDS/HMS organisations to get across to medical professoinals, social care providers, schools and employers how EDS effects life day-to-day and the emotional wellbeing of the EDSer.
So I want to do the best job I can and to do this I need your help!
One of the biggest hurdles people face when trying to get drs to understand eds is that often the condition is seen as a 'one glove fits all'. That is that a hip joint of one EDSer will look pretty much the same as another EDSer. We know this is so far from the truth and that EDS never looks the same, not only from person to person but even for the same person the condition can change how it looks over time.
Its also a misconception that ALL EDSers have stretchy skin. I for one do not have stretchy skin despite having such severe EDS effects elsewhere.
Finally most EDS awareness information focus on the more common effects (loose joints, stretchy skin etc) but so many of us have serious digestive issues, related conditions such as POTS and crossovers between the different EDS subtypes.
I want to get these things across as much as possible. This film is not about repeating the same information that is already out there but is to dispell myths and start talking about the less common issues.
To help me do this I need photos, video clips, audio clips, quotes, etc.
Can you help?
Here is what I need:
Photos/video clips
*splints/mobility aids/medical devices such as TENS machines,
*GI treatment inparticular feeding tubes,irrigation systems, liquid diets, food intolerance, blending your food for liquid diets, bloating, GI surgery photos (scars, recovery etc)
*EDS skin - stretchy, super stretchy, non-stretchy, bruises, scars (typical eds scars and non-eds typical scaring), nodules, stretchmarks, poor wound healing, stitches/sutres pictures, visible veins/transparent skin/non transparent skin
*joint deformity - from reccurent dislocations, scarring etc
*actual dislocations, subluxations, sprains, other joint/bone injuries
*Spine - curvatures, kyphosis, fusion surgery, braces, flexibilty
*xrays - obvious eds xray abnomality and 'normal looking' xrays.
*baby and young children - floppy baby pics/clips, bum shuffling, late walking, clumsiness, easy bruising, easy injuries.
*fatigue/exhaustion - stuck in bed, looking exhausted, floppy/weak limbs, clips of trying to talk with brain fog etc
I also want to get across that we are still people 1st and EDS 2nd so photos and videos of :
*celebrating milestones - birthdays, weddings, births, graduation etc
*family snaps, holiday snaps, having fun.
*Smiling and happy pictures of old and young.
*Pictures of the emotionally hard days.
*adapting normal situations to eds eg birthday celebrations in hospital, taking the kids to school on your scooter etc
I will also be using audio clips of quotes, thoughts and readings from EDSers rather than just having lots of text to read. For this I need voice recordings or video clips that I can extract the audio from.
Audio needed
*What does EDS mean to you?
*What are your worries about the future/hopes for the future?
*What bad experiences have you had re drs, schooling, general public,
*What gets you through the bad days?
*Quotes, mottos or something someone has said that changed your outlook or is your daily EDS mantra?
I would love to have some audio clips from EDS kids too. Even something simple like 'My legs hurt' or 'I want to play with my friends' etc Also audio clips from kids of EDS parents such as 'I help mum by...' etc
I would also like to have people reading some of the information in the film rather than having lots of text to read. I need people to volunteer to record themselves reading from a script once it is written. Again I want to get across the vast range of people this condition affects so if you have a child who could read a line or two, even a young child who could repeat a few words etc.
Finally if you have a video blog on EDS that you would be willing to let me use clips from that would be great.
This project will take a while to complete but I hope that the time and effort people contribute will be reflected in a film that is unlike any other EDS awareness material currently out there.
If you would like to be involved in anyway please email the project email livingbendy@gmail.com
If you send photos, video clips or audio clips please include your full name, age and location so I can credit you.
If you would like to be part of the script recording please email and I will contact you once the script is ready to be recorded.
Finaly if you have any other ideas please email or comment below.
Email - livingbendy@gmail.com
Wednesday, 1 December 2010
Deck the halls and all that stuff!
Hi everyone,
First thank you all to everyone who has contacted me to let me know that my blog is helping others to understand EDS/HMS and also offering comfort to fellow bendies.
Its hard sometimes to come on and write about the month I've had but now that I know that it is helping others I have more reason.
So how have things been since October?
Still waiting to be rehoused and currently living in my extremely bare flat having packed everything ready for my proposed move a few weeks ago. Still here and possibly for another few months but loving having very little to tidy or trip over!
I enjoyed a wonderful birthday, my favourite present was the entire works of Shakespeare found in an old 2nd hand book shop from my boyfriend.
So on to the health stuff...
As predicted the winter is hitting hard and its been an interesting few weeks trying to keep up with my EDS.
My physio became very concerned about my hips after they started to subluxate (partially dislocate) repeatedly during the day. An x-ray has shown 'some structural abnormality' but until the official report comes back from the radiographer they won't tell me what exactly is 'abnormal'. There are a few hip issues that are more common in EDS due to the increased friction from the movement in the joint or from the recurrent dislocations/injuries.
I see a specialist physiotherapist in a few days who needs to assess my hips and pelvis so they can refer me to an Orthopaedic surgeon who will then decide if surgery is needed.
The pain in my hips has become very bad and touching my upper pain threshold so I have finally be referred to the pain clinic.
Last week I passed out and fell badly in my kitchen. It was the first time I used my falls alarm and now realise just how essential it is. The nurses got to me quickly and I was sent to hospital for xrays and pain relief. I expected to be sent home that night but my heart and blood pressure weren't behaving and I was kept in overnight.
My heart rate and blood pressure were monitored through the night and in the morning I was told that I could possible have POTS (Postural Orthostatic Tachycardia Syndrome). This is a condition that basically means your body has become allergic to gravity. It affects the Autonomic system which controls heart rate, blood pressure, temperature control and other essential systems. There are various reasons people develop POTS including as a result of a primary condition, in my case EDS.
If the falls continue I will have to be tested for POTS.
Hearing this was not especially great as I know how bad POTS can get and also how it can cause more complications in EDS.
For more information on POTS see the links at the end of the blog.
Generally I feel really rubbish and think this has to be the worst I've been so far with EDS. However I have been through so much worse in the past and know that whatever happens it's how you approach the challenges that determine how they affect you. As usual I am staying positive (although a little harder than usual), and focusing my energy on just keeping safe and warm over the next few weeks.
I hope that you are all having a great snowy week. Please comment and continue to share your EDS stories. If there is anything you would like me to discuss in a future blog please let me know.
Hugs and prayers to everyone
Cx
More info:
What is POTS? - http://www.dinet.org/ -POTS place. info on POTS and other types of Dysautomia.
POTsgirl's video - http://www.youtube.com/watch?v=OvENfW6scZk - great video explaining POTS simply and to the point.
First thank you all to everyone who has contacted me to let me know that my blog is helping others to understand EDS/HMS and also offering comfort to fellow bendies.
Its hard sometimes to come on and write about the month I've had but now that I know that it is helping others I have more reason.
So how have things been since October?
Still waiting to be rehoused and currently living in my extremely bare flat having packed everything ready for my proposed move a few weeks ago. Still here and possibly for another few months but loving having very little to tidy or trip over!
I enjoyed a wonderful birthday, my favourite present was the entire works of Shakespeare found in an old 2nd hand book shop from my boyfriend.
So on to the health stuff...
As predicted the winter is hitting hard and its been an interesting few weeks trying to keep up with my EDS.
My physio became very concerned about my hips after they started to subluxate (partially dislocate) repeatedly during the day. An x-ray has shown 'some structural abnormality' but until the official report comes back from the radiographer they won't tell me what exactly is 'abnormal'. There are a few hip issues that are more common in EDS due to the increased friction from the movement in the joint or from the recurrent dislocations/injuries.
I see a specialist physiotherapist in a few days who needs to assess my hips and pelvis so they can refer me to an Orthopaedic surgeon who will then decide if surgery is needed.
The pain in my hips has become very bad and touching my upper pain threshold so I have finally be referred to the pain clinic.
Last week I passed out and fell badly in my kitchen. It was the first time I used my falls alarm and now realise just how essential it is. The nurses got to me quickly and I was sent to hospital for xrays and pain relief. I expected to be sent home that night but my heart and blood pressure weren't behaving and I was kept in overnight.
My heart rate and blood pressure were monitored through the night and in the morning I was told that I could possible have POTS (Postural Orthostatic Tachycardia Syndrome). This is a condition that basically means your body has become allergic to gravity. It affects the Autonomic system which controls heart rate, blood pressure, temperature control and other essential systems. There are various reasons people develop POTS including as a result of a primary condition, in my case EDS.
If the falls continue I will have to be tested for POTS.
Hearing this was not especially great as I know how bad POTS can get and also how it can cause more complications in EDS.
For more information on POTS see the links at the end of the blog.
Generally I feel really rubbish and think this has to be the worst I've been so far with EDS. However I have been through so much worse in the past and know that whatever happens it's how you approach the challenges that determine how they affect you. As usual I am staying positive (although a little harder than usual), and focusing my energy on just keeping safe and warm over the next few weeks.
I hope that you are all having a great snowy week. Please comment and continue to share your EDS stories. If there is anything you would like me to discuss in a future blog please let me know.
Hugs and prayers to everyone
Cx
More info:
What is POTS? - http://www.dinet.org/ -POTS place. info on POTS and other types of Dysautomia.
POTsgirl's video - http://www.youtube.com/watch?v=OvENfW6scZk - great video explaining POTS simply and to the point.
Thursday, 7 October 2010
Time for a catch-up
It has been quite some time since I last blogged about living a bendy life. Alot of things have happened in the few months that have gone by. Some very positive, some not so positive.
I am in the process of moving to a new home and the usual stress involved with such a huge expereince is having quite an effect. So I thought I would use this as an excuse to come and let you all know whats been going on in the past few months and what the future might have in store for me.
First of all some non-bendy news
I have been on the council housing list for some time slowly climbing my way up to getting my own little wheelchair friendly bungalow. It has taken 7 months to get to the point where I can say that I may have somewhere before Christmas. However this week it's all gone a bit pear shaped.
The housing people have decided that you can either be a full-time wheelchair user or you only use your chair outside so have no need for an accessible home. I use my wheelchair indoors alot now as my mobilty and condition continue to deteriate. However I can still stand and I can still walk around my flat, on some days very well, so am not classed as a full-time chair user. As a result they have decided that I am no longer a priorty for a wheelchiar friendly home. I have been dropped right down to the bottom of the housing list and told it would be at least a year before I am at the top again.
Thankfully God has been working his wonderful ways as usual and an extremely kind property manager has offered to put me at the top of his waiting list for a private rent bungalow in a village just outside of Hartlepool.
I love the village and spend alot of time there at my boyfriend's home so it is perfect. However because life is never that simple it has caused a few issues...
The village comes under Durham County Council so I have to give all the equipment I have from social services back (which includes a bath lift, special perching stools for getting a wash/working in the kitchen, and my 'falls alarm'). I then need to refer myself to Durham social services to be assessed by them who will then decide if I can have similar equipment from them. This could take anything from a couple of months to a year to happen so it means going back to basics in terms of managing day-to-day and also looking for some 2nd hand equipment I can get hold of myself.
Obviously that is a big pain but nothing serious. However there is a chance I may have to give my amazing wheelchair back also and be reassessed by Durham Wheelchair Service. I have been extremely lucky to get the chair and without it I am very limited in where I can go and what I can do. I can't imagine my life without my wheelchair and it's not till now that I realise just how much it has changed my life. I feel quite humbled to realise just how grateful I have been to have it and how lucky I am compared to alot of people with EDS who are still fighting to get wheelchairs.
Like any big moving of home I'm dealing with all the issues of bills to be paid, bonds to be found and the financial and other aspects that are involved. The stress of moving home is said to be at the top of the list and like anyone else I am starting to feel it.
For me, and for other people with EDS, stress works a bit differently.
I'v had a couple of tears like anyone would when it feels like you can't quite climb that huge mountain in front of you (until you have a cuppa and some chocolate and you are ready to take on the world!). However its more than a short temper and a few tears that I am experienceing.
Most people with EDS have cfs/me (chronic fatigue syndrome) and/or fibromyalgia. see the end of this article for links to some great info on what these are
People with CFS/ME and/or fibromylagia experience different effects from stress where stress causes physical symptoms. Usually this is a flare-up of their usual cfs/me and/or fibromyalgia.
For me its the fatigue that is being triggered and as a result I am in that place where it seems I see more of my bed than I do my friends.
Thankfully it's been over 6months since I've had this level of cfs/me flare and again I am reminded of how lucky I have been the past 6 months.
I am in a much better place to manage the exhuastion as I now have a wonderful partner who seems to know better than I do what I need and how to help.
Right now I know that the next few months are going to be tough but I'm ready to take them on and have the right support and mindset to be able to look forward to the challenge.
Now for the bendy stuff...
It's been quite a year not only for my Ehlers Danlos but also for the hypermobility community as a whole.
It has finally been agreed by the amazing drs who specialise in Ehlers Danlos and Hypermobilty syndrome that they are in fact the same condition. Before now it was often the case that someone diagnosed with Ehlers Danlos Syndrome would manage a little better at getting the right treatment and support and have their condition taking seriously by medical professionals. However someone with a diagnosis of Hypermobility Syndrome would often be told that its not a serious condition, 'you are just bendy' and would have to fight, often unsuccesfully, to get even the basic pain treatment.
Now that Hypermobilty Syndrome is recognised as the same condition (but just a difference in label) as Ehlers Danlos Syndrome, it means that hopefully the condition will continue to get recognised and treated effectively.
As a result of this huge milestone I can now officially say I have Ehlers Danlos Syndrome. It might seem that its just a label and means nothing but already I am seeing a difference in how I am being treated by my drs and physiotherapists.
Treatment has moved in a new direction in the past few months for me. Physio is now focussing on pain relief as it seems that building up the muscle around my joints isn't working. My hips have now started to 'turn themselves off' and are rolling inwards alot. This is affecting my walking and standing alot. I am currently having hydrotherapy with my physio. Its doesnt seem to be having any major impact on my muscles or joints in terms of strength or condition but being in the warm pool is helping with the pain.
I have also been trying new pain medication with the focus on neuropathic pain. This is pain caused by recurrent injury damaging the nerves making them constantly fire off pain signals. It's very annoying being in pain when you know that its simply the nerves getting mixed up and there's actually no injury.
Pain medication for this tends to be the same as that for epilepsy. It works by dampening the nervous system. Due to my sensitivity to certain medications and interactions with other treatments it's proving quite difficult to find something that works. I am simply going to keep my fingers crossed that the right combination of medication is there waiting to be discovered.
I recently attended the Hypermobility Syndrome Association residential. This was a chance to meet up with other bendy people and to listen to talks by the wonderful drs who dedicate so much of their time and career on helping us.
One dr, Dr Aziz, specialises in the gastrointestinal problems that occur in people with EDS. It was quite an eye-opener to discover just how serious this part of the condition can be. My GI issues have been quite bad this last year resulting in my bowel giving up and not functioning. As a result I now have to use an irrigation treatment to keep my insides functioning.
It was a bit of a relief to hear that this can be the eventual treatment for some people with EDS so I am not alone. I had chance to speak to Dr Aziz after his talk and he suggested that in the future I may need to adapt this treatment by having a tube through my tummy as the upper bowel stops functioning. He also said that it sounds like there is alot going on inside me that needs looking at properly so I will be getting reffered to his specialist clniic in London. Again all fingers are crossed that its not as bad as it first appears.
The amazing Prof. Bird has retired from Leeds Hospital where he led an amazing team of drs, physios and other staff in managing the care and treatment of alot of people with EDS in the UK. I was lucky enough to be under his care for the past year and it is becuase of his knowledge, expertise and understading that I have moved forward so much with treatment.
I am now awaiting my first appointment with a new rheumatologist in Newcastle who will take over where Prof. Bird left.
As the wnd of the year slowly creeps up on us I am already enjoying wrapping up in layers of thermals and working out when to get my flu jab. I know that winter can be a tough time of year for me and my EDS becuase of the extra issues of temperature control, lower immuninty to colds and viruses and the cfs/me flares that come with burning more energy trying to keep warm. I know from last winter what to expect and already am preparing. I have dug out my thickest socks and hinting for lots of 'warm' birthday gifts.
It has been the usual rollercoaster that you ride with EDS this past few months and while some of the dips might have seemed impossible to get over at the time, my strentgh to cope and my optimism for my future continues to grow.
I know that life with EDS will always be intresting. It will be fun at times and heartbreaking at others but whatever the next 6months brings...
I amd ready!!!
cx
Links:
Simple guide to CFS/ME http://chronicfatigue.about.com/od/whatischronicfatigue/a/understandCFS.htm
Simple guide to Fibromyalgia http://chronicfatigue.about.com/od/whatisfibromyalgia/a/understandfibro.htm
I am in the process of moving to a new home and the usual stress involved with such a huge expereince is having quite an effect. So I thought I would use this as an excuse to come and let you all know whats been going on in the past few months and what the future might have in store for me.
First of all some non-bendy news
I have been on the council housing list for some time slowly climbing my way up to getting my own little wheelchair friendly bungalow. It has taken 7 months to get to the point where I can say that I may have somewhere before Christmas. However this week it's all gone a bit pear shaped.
The housing people have decided that you can either be a full-time wheelchair user or you only use your chair outside so have no need for an accessible home. I use my wheelchair indoors alot now as my mobilty and condition continue to deteriate. However I can still stand and I can still walk around my flat, on some days very well, so am not classed as a full-time chair user. As a result they have decided that I am no longer a priorty for a wheelchiar friendly home. I have been dropped right down to the bottom of the housing list and told it would be at least a year before I am at the top again.
Thankfully God has been working his wonderful ways as usual and an extremely kind property manager has offered to put me at the top of his waiting list for a private rent bungalow in a village just outside of Hartlepool.
I love the village and spend alot of time there at my boyfriend's home so it is perfect. However because life is never that simple it has caused a few issues...
The village comes under Durham County Council so I have to give all the equipment I have from social services back (which includes a bath lift, special perching stools for getting a wash/working in the kitchen, and my 'falls alarm'). I then need to refer myself to Durham social services to be assessed by them who will then decide if I can have similar equipment from them. This could take anything from a couple of months to a year to happen so it means going back to basics in terms of managing day-to-day and also looking for some 2nd hand equipment I can get hold of myself.
Obviously that is a big pain but nothing serious. However there is a chance I may have to give my amazing wheelchair back also and be reassessed by Durham Wheelchair Service. I have been extremely lucky to get the chair and without it I am very limited in where I can go and what I can do. I can't imagine my life without my wheelchair and it's not till now that I realise just how much it has changed my life. I feel quite humbled to realise just how grateful I have been to have it and how lucky I am compared to alot of people with EDS who are still fighting to get wheelchairs.
Like any big moving of home I'm dealing with all the issues of bills to be paid, bonds to be found and the financial and other aspects that are involved. The stress of moving home is said to be at the top of the list and like anyone else I am starting to feel it.
For me, and for other people with EDS, stress works a bit differently.
I'v had a couple of tears like anyone would when it feels like you can't quite climb that huge mountain in front of you (until you have a cuppa and some chocolate and you are ready to take on the world!). However its more than a short temper and a few tears that I am experienceing.
Most people with EDS have cfs/me (chronic fatigue syndrome) and/or fibromyalgia. see the end of this article for links to some great info on what these are
People with CFS/ME and/or fibromylagia experience different effects from stress where stress causes physical symptoms. Usually this is a flare-up of their usual cfs/me and/or fibromyalgia.
For me its the fatigue that is being triggered and as a result I am in that place where it seems I see more of my bed than I do my friends.
Thankfully it's been over 6months since I've had this level of cfs/me flare and again I am reminded of how lucky I have been the past 6 months.
I am in a much better place to manage the exhuastion as I now have a wonderful partner who seems to know better than I do what I need and how to help.
Right now I know that the next few months are going to be tough but I'm ready to take them on and have the right support and mindset to be able to look forward to the challenge.
Now for the bendy stuff...
It's been quite a year not only for my Ehlers Danlos but also for the hypermobility community as a whole.
It has finally been agreed by the amazing drs who specialise in Ehlers Danlos and Hypermobilty syndrome that they are in fact the same condition. Before now it was often the case that someone diagnosed with Ehlers Danlos Syndrome would manage a little better at getting the right treatment and support and have their condition taking seriously by medical professionals. However someone with a diagnosis of Hypermobility Syndrome would often be told that its not a serious condition, 'you are just bendy' and would have to fight, often unsuccesfully, to get even the basic pain treatment.
Now that Hypermobilty Syndrome is recognised as the same condition (but just a difference in label) as Ehlers Danlos Syndrome, it means that hopefully the condition will continue to get recognised and treated effectively.
As a result of this huge milestone I can now officially say I have Ehlers Danlos Syndrome. It might seem that its just a label and means nothing but already I am seeing a difference in how I am being treated by my drs and physiotherapists.
Treatment has moved in a new direction in the past few months for me. Physio is now focussing on pain relief as it seems that building up the muscle around my joints isn't working. My hips have now started to 'turn themselves off' and are rolling inwards alot. This is affecting my walking and standing alot. I am currently having hydrotherapy with my physio. Its doesnt seem to be having any major impact on my muscles or joints in terms of strength or condition but being in the warm pool is helping with the pain.
I have also been trying new pain medication with the focus on neuropathic pain. This is pain caused by recurrent injury damaging the nerves making them constantly fire off pain signals. It's very annoying being in pain when you know that its simply the nerves getting mixed up and there's actually no injury.
Pain medication for this tends to be the same as that for epilepsy. It works by dampening the nervous system. Due to my sensitivity to certain medications and interactions with other treatments it's proving quite difficult to find something that works. I am simply going to keep my fingers crossed that the right combination of medication is there waiting to be discovered.
I recently attended the Hypermobility Syndrome Association residential. This was a chance to meet up with other bendy people and to listen to talks by the wonderful drs who dedicate so much of their time and career on helping us.
One dr, Dr Aziz, specialises in the gastrointestinal problems that occur in people with EDS. It was quite an eye-opener to discover just how serious this part of the condition can be. My GI issues have been quite bad this last year resulting in my bowel giving up and not functioning. As a result I now have to use an irrigation treatment to keep my insides functioning.
It was a bit of a relief to hear that this can be the eventual treatment for some people with EDS so I am not alone. I had chance to speak to Dr Aziz after his talk and he suggested that in the future I may need to adapt this treatment by having a tube through my tummy as the upper bowel stops functioning. He also said that it sounds like there is alot going on inside me that needs looking at properly so I will be getting reffered to his specialist clniic in London. Again all fingers are crossed that its not as bad as it first appears.
The amazing Prof. Bird has retired from Leeds Hospital where he led an amazing team of drs, physios and other staff in managing the care and treatment of alot of people with EDS in the UK. I was lucky enough to be under his care for the past year and it is becuase of his knowledge, expertise and understading that I have moved forward so much with treatment.
I am now awaiting my first appointment with a new rheumatologist in Newcastle who will take over where Prof. Bird left.
As the wnd of the year slowly creeps up on us I am already enjoying wrapping up in layers of thermals and working out when to get my flu jab. I know that winter can be a tough time of year for me and my EDS becuase of the extra issues of temperature control, lower immuninty to colds and viruses and the cfs/me flares that come with burning more energy trying to keep warm. I know from last winter what to expect and already am preparing. I have dug out my thickest socks and hinting for lots of 'warm' birthday gifts.
It has been the usual rollercoaster that you ride with EDS this past few months and while some of the dips might have seemed impossible to get over at the time, my strentgh to cope and my optimism for my future continues to grow.
I know that life with EDS will always be intresting. It will be fun at times and heartbreaking at others but whatever the next 6months brings...
I amd ready!!!
cx
Links:
Simple guide to CFS/ME http://chronicfatigue.about.com/od/whatischronicfatigue/a/understandCFS.htm
Simple guide to Fibromyalgia http://chronicfatigue.about.com/od/whatisfibromyalgia/a/understandfibro.htm
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