Thursday, 10 June 2010

The Reality of HMS/EDS

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.


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.


  1. All I can say is... wow... That is EXACTLY what I am like. There is one extra bit you missed out which I don't know if it's the same for you... WINTER!

    During the winter I turn into a hermit.. My neighbours think I actually hibernate through the winter and only see me when the weather improves. I don't know if it is the lower light levels or the damp that affects the arthritis but I feel like my battery runs down even faster during the winter.

    Let's face it... HMS/EDS III sucks!

    p.s. Another lack of sleep night for me... 2:12am

  2. the summer is harder for me. My joints become much more wobbly. i think the heat makes them more lax, so i have more injuries than normal. I also can't adjust to the heat very well so tend to be ridiculously overheated.

    1. Tink Rhonda Lee Mse18 January 2015 at 08:33

      I'm exactly the same, I love winter but hate summer with a passion, this blog post is exactly how I am!

  3. Wow, I am so glad I found you guys! Suffering all my life, struck in my early 20's, taken for a hypochondriac and feel just horrible on the inside - like I am a complete failure at everything because I wear out so quickly and have to spend 50% of my time in bed because I feel like I cannot hold myself up. Because I have a bubbly personality and I am always laughing or smiling even when I am crying, people always think I am fine. Finally diagnosed with type 3 EDS, just beginning my journey to getting the help I need...(braces, therapy,disability, housing, too embarassed to try for a wheelchair but could benefit GREATLY from it). My family doesn't believe this and is urging me to get a second opinion even though they have seen what I go through for years - dismissing me as lazy(even considering this has been diagnosed by a geneticist at Vanderbilt- known worldwide and one of the best in the country) ...just VERY discouraging, especially since I'm 32 and relying on them for the first time again since high school...they just don't understand what I have been dealing with. I too become a mess in winter and dread it like the plague. So here I sit, im my bed - freezing limbs, a space heater a foot away from me to keep me thawed out. YAY TO THIS helps me more than you know!!!

  4. Oh Candice!! What a nightmare journey you have had and it sounds like you are fare from the end of it like many of us. Gentle hugs!

    It can be mixed blessings when you finally get that diagnosis, especially after years of struggling. Like you I was nearly 30 by the time i got my diganosis so you expect people around you, especially family to accept and support you through that.

    For some people getting the eds/hms diagnosis is like all your christmases come at once. Don't get me wrong we would give all of this up at the drop of a hat. but after years of suffering and told there is nothing wrong with you, when you finally have an answer and a name for it you are so relieved., and your family are too.

    But for some it doesn't happen like that. Some of us are so happy to receive our eds/hms diagnosis but those around us, especially those who mean the most to us, find it extremely hard to accept.
    They challenege it and refuse to accept it. They ask for 2nd opinions and 3rd and 4th etc.
    Its not that your family think you are lazy and that you don't have eds/hms. Its is most likely that they are HOPING and PRAYING that you DON'T have eds/hms and they will fight and fight and refuse to accept it until someone finds a condition that CAN be cured, or doesnt have the prognosis that they may have read when looking into it.

    Your family will be greiving and this is perfectly normal and probably at some point will be a stage you will go through too. Just give your family time to accept the diagnosis. You can't argue with genetics (although there isn't yet an identifiable gene for type 3 (hypermobility type) of eds so I assume that the geneticist has diagnosed type 3 by ruling out the others.

    Give your family as much info as you can on eds/hms so they can learn about the condition. Also learn as much as you can too. The more you know about your body, the normal working body and the eds body, the more you can manage the condition, get the most out of the drs and prevent further deteriations.

    The more stuff your family know the better they can help you as well as understand what to expect from you. Point them towards online support groups like where there are sections on the forum for family members to ask for advice or come for support.

    As for your bubbly personality. While it may be frustrating that people don't seem to notice how you are feeling inside, that smile and laughter will help you more than you know once you start to manage you pain and pacing :)

    Your message has prompted me to blog about a few things including the 'grieving' process. So thank you.

  5. I feel for all of you, as I have HMS.
    And it is always incredibly difficult to explain to others about the condition, as they often just do not understand. They don't physically see anything wrong, so they assume I'm fine.
    @NeoMorph: winter is also worse for me too, the cold tightens everything up, and I constantly hurt everywhere.
    The worst thing is, the benefits agency believe I am fit to work! So I am currently going through the appeal process, as like many of you, on bad days I cannot move, so how am I expected to do a full time job?
    The fact that this condition is permanent, and there is no cure,highly depresses me, esepcially as people don't understand, nor do they take the time or effort to try and understand. Maybe blogging will help my frustration. Thank You :)

  6. I found your blog while looking for info on EDS because of a friend of mine that has it. I'm so sorry you are all in so much pain. I can relate indirectly as I have fibromyalgia, so I know how bad chronic pain can be.

    I sincerely wish you all the best. Thoughts and prayers for all of you. :)

  7. This is very well written and truly explains what we experience.
    I am 54, I received my EDS Dx at 50. the Dr. said, " The bad news is you have EDS, the good news is now you KNOW you have EDS." I had been in a car accident and everything in my spine was stretched and thus my spinal column rubs against the bones in my neck and lower back, and it all goes in and out badly. I had grown up being picked on for being clumsy. And had at one time or other been told I had "genetically loose ligaments," with no explanation or Dx. Have been told Fibromyalgia and many others and tested for everything. I have had more than 30 major surgeries, many to stabilize joints, and several lifesaving and have had every test under the sun. But, not "being crazy' or a "hypochondriac," has made a world of difference. I also have MANY breathing difficulties , (have had a trach). Heat is bad for my breathing and cold is bad for joint pain and immobility. Thank you.

  8. I live with EDS HMS too. I am now 55 and having a hard time keeping my weight under control. If I have a bad day where I get over tired I overeat. I have lost 8# so far and am stuck. I need some tips! I want to loose at least 15# more... Do any of you have experience with this and any ideas how I can keep to my goals? Also, I have some skin involvement - all my scars are widening and have the cigarette paper look to them. I am thinking about trying Vellashape to smooth my skin (cellulite), but I am afraid it may not work or cause more problems. I want to look better for all the hard work I am doing!

  9. victoria steel12 July 2013 at 06:34

    I am a fellow bendy! as is my daughter and I know how you feel some days I am so tired I can barely get up! winter is so hard! I have an injured ankle (I was not diagnosed until I was 35 years old and had torn tendons/ligaments in my right ankle, which means I can only walk if I wear boots) and people think I am joking when I saw just doing the normal every day stuff makes me very tired! my little girl gets stupidly tired and I wish more people understood about this condition!