Friday, 22 June 2012

From the Start

Well!! Where to start!!

As you'll see from my profile I suffer from Hypermobility Syndrome, also known as Elhers Danlos Syndrome  (type III) in my case - I'll refer to this as HMS/EDS from now on. (Save on the typing!)
For those of you that have never heard of this condition, and i'm sure there are many, its basically a disease that effects the connective tissue proteins such as collagen. The result of this is joint laxity. Some people that are hypermobile don't suffer any pain, those that do are diagnosed as having HMS, like me. There are so many symptoms that are connected with the disease but the most difficult and annoying to put up with is the chronic pain that it causes.

I've only been recently diagnosed with the condition after an agonising pregnancy and not recovering post birth. I suppose I have my beautiful baby to be thankful for my diagnosis even though having him has caused the worst flare up i've ever experienced. His little  face is the only thing that gets me through every day of living with chronic pain.

Anyway back to the start!

From a young age I always suffered with joint problems. When I was born my mother was told I had a dislocated hip. Once x-rayed, she was then told it wasn't dislocated but had developed a week earlier and that I would have no problems so nothing more was done. My mother always had trouble buying me shoes when I was younger. I would walk in on both ankles and always end up with sores from the shoes rubbing on the inside of my ankles. I now know this is because of the laxity of the joints, I have very bendy ankles!
Throughout my school years I suffered with pain in my knees and hip, the same one I had a problem with when I was born. I was advised to get physio, take pain killers and referred to a bio-mechanics and made to wear raised insole in my shoes to correct the 'wonkeyness' of my legs and my flat feet. (Another characteristic of EDS.) All of which did help at the time.

From my late teenage years I started to get a lot of pain in my upper left back/shoulder and again in my hips. Again I was referred for physio and put on stronger pain killers.

I managed fine and the pain was barely there, or at its worst it was cope-able. I was always back and forward to physio but it never seemed to make much difference so I just got on with it.

Last year I fell pregnant. This is when everything fell apart. At just 8 weeks my hip started to give way and gave me trapped nerve like pain down my leg. I went straight back to the physio who said it was just my joints loosing up due to the pregnancy hormones. I was given core stability exercise, which I had always done anyway, and I had appointments every few weeks to see how I was getting on.

I really wasn't!

After giving me a support belt, which baby did not like, and the Dr suggesting I started taking the codeine again, which I'd stopped as soon as I found out about the pregnancy, I was getting worse.

Still working full time at a local Theatre as Duty Manager I was finding it hard to keep up with the physical side of the job. By 16 weeks pregnant I was using crutches to take the weight off my hips. My Dr and Midwife fobbed me off with ''its SPD'' (Symphysis Pubis Dysfunction). Looking at the symptoms, it didn't really add up. I never had any pain at the front of my pelvis, only the back in the SI joints where I'd always had pain but went along with them, they were professionals, surely they'd know what it was.

By week 20 I couldn't walk without the crutches at all. As my job description required me to be physicaly fit and they couldn't offer me any alternative redeployment I was signed off sick. 

At 26 weeks my legs gave away completely when I attempted to make it to the toilet in the middle of the night. My partner had to pick me up of the floor and carry me. I was advised by the Midwife to go to the hospital the next day and was seen by a consultant. Again I was told it was just SPD and they couldn't do anything for me. I was then put onto stronger pain meds, (Tramadol) and made to see the consultant every 3 to 4 weeks to make sure both me and baby were doing fine.

Baby was fine. I was not. From then on I felt like I was deteriorating daily. I spent my days watching the clock and waiting to take my next set of tablet. The Tramadol made me ill. I was constantly sick. I lost so much muscle mass I looked like a skeleton with a bump. Luckily baby was healthy as ever and putting on weight as he should, he was just taking it off me!

Eventually I had to resort to a wheelchair. I would be out of breath walking with the crutches from my bedroom to the bathroom even though its about 10m away. I hated leaving the house. I became depressed with the fact that my independence had been taken away from me. I always had to have someone with me, to push me in the chair, to drive me places. It gets to me even writing about it now.

My consultant agreed that I go in for early induction. After all, SPD is only cured by giving birth! 

She gave me a date for 37 weeks which happened to be Xmas eve. To cut a long story short, baby did not want to come. After 3 days in hospital and many attempts I was sent home! Devastation was an understatement. I was supposed to be leaving hospital with a baby, not spending another week in agony!

I returned just over a week later and after a successful attempt of induction, my little boy was born naturally with no complications and with only a 7 1/2 hour labour. I suppose the only thing that ''went wrong'' with the birth was the epidural not working. The midwife told me it was. I could move around and could feel EVERYTHING, it definitely was NOT working! She only believed me after I gave birth and she had to administer 4 extra injections of anesthetic so I could be stitched!!

I was home with my family only 8 hours after giving birth and seen the New Year in with my gorgeous family! Perfect.

Weeks went passed. I was still in agony, still on pain meds, plus new ones that I wasn't allowed to take during pregnancy. I was seen weekly by the physio. Still no change. At least I was able to walk without crutches, I used the pram as a zimmer!!

I was eventually referred to a rheumy physio 4 month post birth. He gave me my diagnosis and sent me for an MRI to make sure nothing else was going on. 

I'm now 6 month post birth. I'm still waiting on the MRI results and still waiting on referrals to the local pain team and to the specialist Rheumatologist who has an interest  in HMS. Luckily for me he's based at the local hospital and the only specialist in the North East.

I'm also back to work full time. It's getting unbearable. I work different shifts every week. Sometimes day shift and sometime late, usually until 11pm. If I work late, I cant physically move the next day until the second lot of tablets begin to work. No use when you have a baby to look after. I'm exactly the same if I work 4 or 5 days in a row. I need a day to recover. I would never want to be off work sick but at the minute i'm beginning to think i'm not physically capable. 

I hate the fact i'm not as able bodied as I used to be. I hate that everything I do has an effect on me the next day. I shouldn't be like this. I'm 25 not 75! 

For those of you that don't know about or haven't heard about the 'Spoon theory'. Google it and read it. It explains how I and many people with Chronic Illness and Chronic Pain feel.

I'll be blogging about my spoons. How I use them. How I save them. How I'm not very good at all this spoon saving yet. 

Savour your spoons - you don't know when your going to need them!!

Much Love 

Stacey xxx


  1. Fantastic blog Stacey,
    I haven't been blogging long either but I have definitely found that it helps in a number of ways and it is great to get an insight into what you go through each day. I wish you the best of success with your blogging and I for one will definitely be reading!

  2. Thanks Keith :)

    My hands are killing from writing that! lol.

    I'll try keep them short and sweet from now on.

    I found writing stuff down when I was pregnant helped a lot to even though I never published it. I thought i'd give it a try anyway and see how it goes.

    Loved your superwoman blog this morning btw!

    Stacey x

  3. Very inspirational - I have also started a blog about my treatment for HMS & have had a great reception for it. It's raising awareness amongst my friends as most hadn't even heard of it. Keep up the good work, I'll be continuing to read each installment :) x

  4. Was sent over by a mutual friend. I'm a fellow EDS'er who's EDS only became really apparent while I was pregnant. I was in maternity jeans at 9wks because my hips widened so much and from about 26wks I was crawling to the bathroom and not able to get out of bed much. Sadly, my cons and MW wouldn't even consider SPD, I was told there was nothing wrong with me!

    Three years post-birth and I still struggle. I would love to tell you something inspirational about how it gets better and easier but I can't really. I suppose, all I can say is, if you find yourself getting really really down about it, let yourself feel bad for a bit, but know that you probably won't feel that bad forever. When my daughter was 6 months old I thought things would never get better. I gave up on things because they were hard and I couldn't cope. I just couldn't face the failure, I couldn't stand being so dependent, I couldn't fathom only ever getting worse for the rest of my life.
    But now, I've got more resolve. The obstacles still get me down but I try harder to work around them. It matters more to me to make it work. I'm 24, I've got far too much life left to live to give up on it now.
    Good luck, I'll be ready and rooting for you and hoping your spoon-store is abundant!

  5. Its definitely raised awareness amongst friends and family already. Because I don't look sick or disabled people just seem to ignore that your not well or don't even realise how you feel!

    @Henrietta - That's awful!! I think I was lucky with the MW and Con. Even though it was misdiagnosed I was given the right advise and pain relief. The only thing that was over looked and I consider dangerous now is that there was an increased risk of premature birth or hemorrhage which I wasn't made aware of. I suppose they weren't to know it was HMS. I'm not going to give up on anything, I know I can push through this and I just have to adapt my life to the condition even though I don't really want to. God I wish we could buy extra spoons!! lol x

  6. Thanks so much for stopping by my blog! When I wrote that post, I could not find anyone in a similar situation to me, but so many have found it and offered support!

    Sorry to hear you are struggling. I work from home with a 4yo and a 1yo. I don't know how I'd manage working outside the house, especially shift work.

  7. I think i'm 'just' pushing through the working side of things. I'd love to work from home or even a regular 9 till 5 so I'd have a routine and my body would get used to it. I'm lucky to have a partner who gives me a load of extra spoons by cooking, cleaning, helping out a load with the baby etc so that really helps. I don't think he really approves of me trying to live my work life as normal when I can't do the same with my home life as it's usually spent lying around the house.

  8. Stacey, fantastic blog. I really feel for you. I have hypermobility too, but nothing like as bad as your condition. Mine is primarily my ligaments. I used to have such bad pain in my spine that I was chronically depressed for years. Then I discovered Alexander Technique. It totally changed my life! I went from being depressed beyond belief (and permanently suicidal) to outgoing and optimistic. I produced a feature film, started playing golf again (having given it up for 2 years) and now I'm a powerlifter. I still have problems: arthritis in my knees and wear in my shoulders from multiple dislocations (not due to powerlifting I might add), but all in all I would say the Alexander Technique saved my life. Around the same time I discovered it, I was also diagnosed with hypoglycaemia. Learning to manage that has taken a long time. It's taken 10 years to work out that the best thing I can do is the opposite of what the "experts" tell me to do. It's an endless learning curve...

  9. Thanks Tom! I will give the Alexander Technique a look :) It's good to hear people do and can actually learn to control the condition even if it does take a long time.

  10. Great blog. But my goodness i could have written it!
    I'm 24 and have gone trough pretty much all you have just wrote!
    My second child is now 8 months old (nearly) and im still suffering like you.

    I've been told to lose weight ..... I've lost 3 stone and the pain is often worse than when I was bigger!

    I'm waiting for a physio appt but not holding out much hope :(

    Good luck with everything. Looking forward to following these blogs :) x