Sunday, 25 April 2010

My bendy story

Like everyone with hms/eds, I was born with the condition. There were obvious signs something was wrong very early on but due to the common lack of knowledge of the condition i did not get diagnosed until I was 27years old, by this time the condition had become quite bad.

Although There didn't appear to be any problems when I was born, I did have hms/eds symptoms as an infant. I did not walk until I was 4 years old, which is common with hms/eds, but this was put down to me developing slowly.
When I did start to walk I would become tired easily and it took my parents a few years of hard work to get me to walk normally.
I complained of pain in my legs from an early age but drs put it down to growing pains (again very common for people with hms/eds). At age 12 I started to get alot of pains in my chest. This was the start of my ribs dislocating (yes ribs can and do dislocate in people with hms/eds although alot of drs will swear blind they do not, even when they see it themselves). Again, after various hospital visits and lots of tests, it was put down to growing pains.

I injured myself very easily and was covered in bruises and sprained joints as child but it wasn't until I was 20yrs old that I myself started to think something wasn't right. I started having problems with back pain which I visited my gp for on a few occasions but this was dismissed as being 'psychological' rather than a physical issue. I also started having more and more problems with my digestive system which was put down to IBS as a result of 'stress'.

By the time I went to uni at the age of 22 I was struggling more and more with poor energy levels and widespread pain. I studied performing arts and a weekly dance class would leave me stuck in bed exhausted and usually with at least one injury. My 'IBS' became much worse and I was eventually seen by a specialist who tested me for Crohns disease (which runs in the family). However no crohns showed up so again it was diagnosed as IBS. In my 2nd year at uni I spent a month bedridden due to the back pain and stomach pain become so severe that I could not move. Eventually after lots of rest things improved and I was back to my normal self.

At age 25 things started to deteriorate and my symptoms became more and more frequent. I was finding walking tiring and was becoming more and more fatigued. Even after a good nights sleep I would need to go to bed for a few hours in the afternoon. My back pain become more severe again and the pain episodes became more frequent. Again I asked my gp for help but once again it was put down to depression, which was becoming the constant cause of my problems according to drs.

When I was 27 I was becoming less able to stand and walk. I started to use a walking stick to help me stay on my feet longer and even started hiring electric wheelchairs from Shopmobility (a wheelchair hire company) in order to go shopping. I noticed at this point that my toes were curling under each other. I thought that maybe this was the reason I was finding walking harder so I decided to visit a private chiropodist. I was fed up with my gp at this point who was equally fed up with me.
The chiropodist I saw was the first person to mention the word 'hypermobility'. I had never heard of this before so didn't think much of it when she told me the bones in my feet and ankles were very hypermobile. She gave me some orthotic supports to wear in my shoes which would lift the flat feet and support my feet. I went home and decided to look into hypermobility rather than go to my gp as she had advised. I was gobsmacked when I came across hypermobiltiy syndrome as I was like someone had written all my problems down and given it a name.

I couldn't believe how much the condition fitted my history or problems. I was amazed how I had had so many obvious signs of the condition but no one had picked up on it.
I didn't dare go to my gp and ask for a referral to a rheumatologist as advised by the information I had found because by this point the word 'hypochondriac' was beginning to appear on my medical notes. Alot of people with hms/eds are labelled as hypochondriacs or attention seekers by gps and drs who refuse to take the person's concerns seriously. When tests continue to come back normal and more common conditions are ruled out, gps often put the symptoms of rare conditions like hms/eds down to psychological issues.

I carried on as I was using my walking stick and spending more and more time in bed and less and less time doing things. After about 6months of finding out about hypermobility syndrome, my back pain kicked off big time. The pain level was so high that I was spending more and more time unable to move and stuck in bed crying with the pain. I was trying everything I could including heat wraps, hot baths, massage, over the counter pain relief and even psycological techniques but nothing worked. My hips and knees were now becoming very wobbly and were starting to dislocate. One night my knee dislocated badly while in bed and it took me 30 minutes before it eventually went back into position. The next day I went to Boots the chemist and asked the pharmacy for the strongest pain relief they had. She asked what problems I was having and she said that I needed to ask my gp to refer me to a rheumatologist to examine me for hypermobility syndrome. After another week I finally bit the bullet and made an appointment with my gp.

I took the letter the chiropodist had written for me and told him all about the problems I had had and showed him information on hypermobiltiy syndrome. He was not impressed at all. He told me that I had no right to assume I knew my body better than he did and that I had to stop trying to seek attention and to stop making things up. I couldn't believe how horrible he was. I had gone to him with loads of information and the possible key to solving the mystery of years of endless symptoms. I burst out crying as I thought, 'this is it, this is the end, I'm never going to find the answer'. Crying obviously reinforced his opinion that my problems were down to depression but he told me he would refer me to a specialist just to prove to me there was nothing wrong with me.

The day I saw the rheumatoglist was the happiest day I had had in a long time but also, just like with my gp, became a day of having any hope of help crushed.
The specialist examined me testing the movement in every joint. At one point my hip dislocated as he moved it which made him panic. Eventually after 20mins of prodding and poking he confirmed that yes, I did have Hypermobility Syndrome. I couldn't believe it! I was so happy I had finally been told it wasn't in my head.
But then it turned sour. The specialist told me that the condition doesn't really cause any real problems, that it just means you are very bendy and that it can actually be a good thing if you are a dancer or sports person. He said that the level of pain I said I had couldn't be caused by the condition and so he was doubtful that my pain was a bad as I said it was. He also said that I shouldn't need a walking stick and that i just need to exercise more and spend less time in bed. The exhaustion, he said, was also not related. I was devastated. I had found a forum on the Internet for people with hms/eds and had read that many people had experienced the exact same thing. They finally get a diagnosis but are told that its not that big a deal and to just get over it and get on with your life.
I was offered no treatment. None of the recommended things I had read that would help such as physio, pain medication, splints etc.

I went home very confused. I was so happy I had finally got a diagnosis but had no idea what I was going to do about it. I decided to change gps that day as I had succeeded in proving to my gp that he was wrong and did not look forward to having to see him again.

My condition continued to deteriorate over the following year and eventually I was refereed to physiotherapy after a very bad dislocation of my shoulder. At last I was going to get help. However I was seen by a trainee therapist who, after just 3 sessions, told me that physio won't make any difference and I was discharged.
My new gp was more sympathetic than my previous one and by this time had put me on codiene to help with the pain. He also refereed me to be assessed for a wheelchair and also refereed me to a specialist nurse to help manage the digestive system problems I was having by that point.

After a further year of my gp trying to help me, I discovered there was a dr in Leeds called Professor Bird who specialised in Hypermobility Syndrome. He had a specialist clinic of physiotherapists, occupational therapists and other staff who he had trained to treat and understand hms/eds at a high level.

I asked my gp to refer me to see this amazing dr who had developed a great reputation on the online hms/eds forum. My gp agreed.

6months later I had my first appointment with Prof. Bird. He examined me and took a very detailed medical history of myself and all of my family. He confirmed I had Hypermobility syndrome and that most of my joints were affected. He also told my mum who was with me that she too had the condition due to her medical history and from what he could see of her joints. He also said that it sounded like my father also had the condition and this is why, by this point, the condition had become very serious for myself.

After taking xrays and blood tests he refereed me to see his physiotherapists and occupational therapists.

I went home extremely happy that at last the pain and exhaustion I had were genuine and that I had been right all along to fight for someone to take me seriously. However I was also very upset that it had taken so long and as a result my joints were now in serious condition.

Prof. Bird advised my gp to put me on a high dose of tramadol and amytriptaline for pain relief. He also asked that I would be refered to see various other specialists to look into the related problems I had.
A few months later Prof. Bird contacted my gp to say that the xrays I had done showed that I had already developed osteoarthritis in my lower spine and that the Sacralilliac joints (where the spine joins the pelvis) were degenerating. Although this can be a result of hms/eds, because of the family history of crohns disease he wants to look into this again as this type of degeneration of these joints is often a result of crohns diesease.

My physiotherapy and occupational therapy assesments confirmed that my joints had become very unstable and weak as a result of recieving no treatment for so long. I was refered back to my local physio department under a senior therapist with the advice that I should recieve treatment indefinatly on a weekly basis. My new therapist is amazing and understands the condition so well.
I was given various splints for my wrists and hands by the occupational therpaist and advised to ask my social services to provide me with various aids such as a bath seat that lowers me into the bath, as well as equipment to lift me up to sitting position in bed.

I am due to see professor bird again in about 6 weeks time. I am hoping that he will have more information on my test results and has decided whether to be tested again for crohns disease.
Prof. Bird is due to retire in the summer so I am hoping to be reffered to another rheumatologist in Newcastle who also specialises in hms/eds.

I now have a social worker who is in the process of setting up a care plan for me in order for me to recieve support from a carer a few times a week in order to help me bathe, shop, and make meals.
I am also waiting for a new wheelchair that has been made for me by the nhs. The new chair is much lighter than my current one so I should be able to push myself. Its also designed for much more frequent use including for inside my home as my mobility has become less and less.

I am also having driving lessons in an adapted car so that I can remain independant.

My story shows just how quickly and rapidly hms/eds can deteriate when no treatment is offered. It shows how much damage can be done by ignoring the problems and why it is essential for gps and drs to gain more understanding of connective tissue disorders.
I am luckier than some as I am now receiving very good support and treatment. Even though it was a long hard fight, some people are still fighting.
I have no idea what the future holds but I do know that I am unlikely to be able to walk properly again and that my condition will continue to deteriate rather than improve. I have learnt alot in the past year about how treat my pain effectively with medications, TENS, and heat treatment. I have also developed more understanding of the importance of pacing myself strictly so that I use the little energy I have effectively. I have learnt not to feel guilty or upset when I am unable to get out of bed and to feel ok about not being able to do alot of things that I used to be able to do.
I feel much happier in myself and while my quality of life has reduced a great deal, I no longer suffer from depression and feel very positive about life.

I hope that in the future more drs gain understanding of the condition and it my dream that one day, people with hms/eds recieve a diagnosis and appropriate treatment very early on so that no one has to become as disabled as I am.
It is also my dream that one day a cure will be discovered so that people with hms/eds can at least be prevented from deteriating further.


  1. Thank you for sharing your story. So sad it took so long for you to get the proper diagnosis. I was diagnosed with fibromyalgia over 20 years ago then last year a rheumatologist said he thinks I was misdiagnosed and I have hypermobility. I am 44 now and have severe arthritis in lower spine. My 9 year old daughter has been diagnosed with joint hypermobility syndrome which she has had since birth. My 14 year old has just been referred to a rheumatologist by orthopaedics who have diagnosed joint hypermobility. Thankfully a different rheumatologist than the one my 9 year old saw who said that most Olympic gymnasts and swimmers are hypermobile so my daughter should just get on with it. Hope everything goes well with your new care plan.

  2. Thanks for sharing and so sorry it took so long for you to be diagnosed. It shocks me that there are some people who are reaching their 40s, (and one lady her 60s!) before diagnosis.
    Just so you know, 'joint hypermobility syndrome' is the same as 'hypermobility syndrome'. If a rheumatologist gives you this lable it's usually becuase they do not understand the condition. This rheumy seems to be one of those given the advice to your daughter to just 'get on with it'.

    If you can get yourself to There is a list of hms clinics in the uk on the site which I would heavily recommend you have your gp refer both you and your children to for a proper assesment. There is always a small chance that a rheumy who gives you and old label from not understanding the condition could have missed signs of Ehlers danlos Syndrome. Hms is a type of ehlers danlos but there are other types that can be more serious so always a need to have them ruled out properly.
    Professor Bird at the leeds clinic is retiring so not seeing any new patients (although another dr there is) however if you are in the north of england and can easily get to Newcastle I can give you the name of a specialist there who is trying to set up a hms clinic (he has hms himself and is developing a great reputation).
    Don't leave it with this 'here is your out of date diagnosis just get on with it' advice from this dr as you and your children could be in the need of essential phyiso and pain management that I'm guessing this dr will not offer.
    add me on facebook if you can (searce for visionlessart or carrie beckwith - in the newcastle region) and I will give you contact details and suggestions for your gp.


    1. My gp has referred my daughter aged 8 to a rhumatologist and suspects shes has this condition. she has been troubled with constipation since being a baby and only now is she getting help for it from the community nursing team.

      She also found it difficult suckling from a bottle and found weaning hard as she used to choke on food as a young baby.

      She has had chronic stomach ache and leg pains which has been ignored and dismissed as one of those things but has not been taken seriously and struggles to keep up when we go distances for which she has now just been given a wheelchair. She has had insoles for flat feetsince being a young child and needed piedro boots as a baby as her feet used collapose under her weight so she could not weight bear.

      She has startted complaining of pain in her back and shoulders and now has scalpular winging. New things keep cropping up

      Profeessionals have acknowledged she is hypermobile and bendy but not linked everthing going on with until the gp did so we are hoping to get her diagnosed and hopefully given the right management to avoid damage in the future.

    2. I was diagnosed as having hms about 8 years ago and more recently diagnosed as having fibromyalgia. These stories have so many parallels with my own. I find that I too have been left to 'just get on with it' as doctors seem to have little understanding.
      I live in Newcastle and would be hugely grateful for any information on specialist treatment. Hopefully some time in the future there will be better understanding, diagnosis and treatment for these conditions.
      Wishing you all the best of luck in your battle x

  3. Wow, reading your story is just like reading about my own life.

    I'm currently at the stage where the rheumatologist at my local hospital diagnosed hypermobility syndrome and then said that it won't cause any problems and that I'll stiffen up to normal levels about the time that all my friends start complaining of getting stiff and feeling their age. Apparently HMS can't cause the kind of pain that I have so I should go back to my GP to ask about other conditions. Grr.

    Thank you for writing your blog, I plan to read more of it tomorrow and I'm sure I'll gain lots of useful info.

  4. Have just found your article and wow you could have been describing my daughter! Chelsea was diagnosed aged 9 by our fab gp who identified HMS straight away however since then she has just been told to get on with it. Now aged 20 she is in severe pain with chronic abdomen pains which I'm sure are linked to the HMS, no point asking tho cos nobody knows what I'm talking about. I will show her your article which I hope will make her feel better or understood at least. I hope you are well and continuing to manage your pain

  5. Very good info. Lucky me I came across your site by
    chance (stumbleupon). I've book marked it for later! back muscle pain in Hong Kong
    is a non-invasive pain therapy treatment for individuals desiring general physical health maintenance and enhancement or relief from chronic pain.