Deterioration, progressive worsening?

[Beckaboo]

Hey guys,

I went to my appointment with someone at the hospital yesterday, and I’ve got to say, I was pleasantly surprised. He asked me lots of questions, did an examination of my entire body (despite only initially being referred to because of my knees/back). I brought up the subject of Hypermobility, and he agreed and said of course it could be an explanation for all my pains. I was really surprised, as after all your horror stories of less-understanding doctors, I was getting really nervous, worried he’d think I was being a bit critical and over the top. He examined me, did lots of ‘bendy’ tests and was stretching and poking me left right and centre.

He’s sending me to see a specialist rheumatologist, and to see a podiatrist to get me some insoles to help with my walking also. I just could not believe how helpful he was. He said the next step is to be tested for other things, like auto-immune diseases, surprisingly though, he said this would probably come back fine, but they’re just precautionary. So fingers crossed, something, whatever it is could get to the bottom of it.

I was also told by my physio later that day (after he’d already mentioned it), that hypermobile people are somewhat weaker anyway, but due to my other condition, I have further weakness, to the extent I can barely support and keep myself upright as my back muscles are too weak, and causing them to spasm. I’m beginning hydrotheraphy soon, and they’re hoping that’ll start to exercise more of my body, without injuring it.

The only thing which confuses me is the fact I’ve always had lots of little niggles and pains, but never really thought much of them. But suddenly this summer it all got much much worse, and very quickly. I am currently deteriorating day by day (the physio has slowed this though), and my tiredness is getting worse. Did any of you guys find you suddenly got worse very quickly too? I mean, three months ago, I was achey, but ‘normal’, and able to get on, walk around and stuff. Now, I can’t get out of the house, we’ve had to rent a wheelchair so I can go out, and can’t walk without my crutches .

Would be good to hear from you again! Please excuse yet another essay !

Becks x

[l00pyp0u]

Yep, had car crash in Jan, minor, and not my fault, coped till March, then have steadily decreased since then. Buying a powerchair/Scooter on Friday, so I can atleast get to the local shop for milk on my own till this gets sorted out. Basically fed up to the back teeth with it all. Hoping to improve when someone finally treats me, am waiting for board to go to Leeds at moment, as no one here knows anything.

LOU

[WinonaLemonade]

i deteriorated slowly and at quite a steady rate from when i was very young but i went quicker with hormones and everything. i think i may have slowed down now, touch wood

[Beckaboo]

I'm sorry to hear that. Presumably, you would still be more able if the accident hadn't occured. A frustration I have is that I just woke up one day, and just couldn't walk. No explanation. Only had a sore patch the day before. Just glad to have the doctors finally working with me now, as I'm pretty complicated !

Have you not officially been diagnosed with anything then? Did you have problems before the accident?

Hope things start going well for you soon. It totally sucks having to rely on other people. I'm at uni at the moment, and feel so bad as my boyfriend is pretty much having to do everything. The cooking, cleaning, shopping, getting stuff for me. Seeing as he's trying to study also, I feel that I'm such a hinderance. I'm obviously not as bad as you right now, but had to get a wheelchair, simply so I could go out for more than a few mins and not have to have my car right there. Still yet to try it out.... bit scared/embarrassed to be back in one again.

Becks x

[Es*]

I deteriorated quickly after a virus that meant that I had balance problems and was pretty immobile.

[Finarda]

I deteriorated really quickly too. Two years ago I started with hemiplegic migraines even though I hadn't had one in years. The migraines headaches got worse too. Then I dislocated my shoulder twice 6 months afterwards, then 6 months after that woke up one morning with a sore hip and by the end of that day could barely walk and that was the fast decline - it took 6 months for the pain to largely go away but by now I'm also having daily subluxations in my hands, feet, lower back and knees and wear braces and walk with a cane all the time.

I've had two other bad times in my life - around puberty and at University. I wonder now if I'm going through an early menopause and it's the hormones to blame?

Fiona

[Fiona-Jane]

hiya,

i'm another one who deteriorated quickly. everything was fine (well, ish- was able to do whatever i wanted as long as i was careful) but when i hit 25 i went downhill. i stared dislocating daily and my fatigue got tons worse. ive always had the odd dislocation and chronic pain etc but they didnt affect me too much. at that point i was still able to do acrobatics classes 3 times a week in addition to holding down a full time job but quickly became unable to do either.

i seemed to stabilise a few months later but then started to deteriorate quickly again about 2 years ago and haven't stopped.... every few months i have an injury that is severe enough that it refuses to heal. i'm hoping the deterioration slows down as i'm now pacing properly and getting enough rest etc. i think the first deterioration slowed as i was between jobs and so had more time on my hands and got more rest without realising it....

it's quite depressing to realise that the saying 'it's all downhill at 25' was true in my case! but at least i still look only 17 (im 28) which is fantastic

and i suppose deteriorating relatively young and rather quickly helped me to change my lifestyle etc as i was forced to as the deterioration was so fast i didnt have any other option but to pay attention to it and change. i hate change and i dont know what i would have done if i couldnt have gone back to office work that i'd done when i left uni, i was lucky that i still remembered enough of excel etc but if i'd had a longer break from it i would have been seriously struggling.

so deteriorating quickly isnt always that bad- i hate change and only do it when i absolutely have to so this way was very good for me - otherwise i'd still be pretending that everything is ok (completely in denial ) and just carrying on regardless.



fi xx

[OzarksUSA]

I have deteriorated quite quickly. Summer 2008 I was jogging, albeit in a lot of pain...but still jogging. Flash forward to today, October 2009. I can barely walk and have to ride the motorized scooters at big stores. I feel like my body has deteriorated so incredibly fast that every day another part of me feels "broken." I'm also dealing with the psychological issues brought about by the pain and no longer being able to do the things I want to do.

Wow, it would be great to even have a conversation and not talk about or even think about pain!

[Spireite]

Yes I went downhill quickly in 2000. I first felt ill at Easter and saw the ridiculous GP then. After 4 useless trips to the GP I ended up in an ambulance in June 2000 and admitted to a geriatric ward for heart tests in vain and the rest of the year off work! It was a case of as soon as one thing went wrong, everything went wrong. I think we are finely tuned.

I diagnosed myself in 2007, and would add I am now improving slowly and surely, with the help of a good consultant, injections and self-physio and management.

[Muchadou]

*Raises hand in the air* Yep, I deteriorated rapidly too. Over the course of a few months last year I went from upright/coping w hellish pain to wheelchair & home help.

Any medically-trained board members have ideas as to why we advanced this way?

As was said before, it's so comforting & validating to find others in the same (wheely) boat!

Mxx

[SAMMY]

Hey guys. I went down the pan quite fast just over the last year though it wasn't a real surprise as my doctor said it would happen. Never thought I would be looking at 4 wheels but might as well get used to it of stay at home? SAMMY

[lil_miffy]

i had problems as a kid but nothing major. just pains and lots of bruising but then had odd few weeks/months over the past 5 years where i was worse. But then last year i started having problems walking and was having more problems with my back then just got worse very quickly. I dont have phases now, its constant and iv gone from just needing insoles in my shoes to using a wheelchair in about 6 months so its happened very quicly for me too.
My thoughts are that the body just gets to a point where it cant fight all the things that are going on with us and the hms/eds just takes over.
I consider myself very lucky though becuase iv had 27 years before last year, of the condition not interfering with my life that much. I also think that becuase i got worse very quickly iv had to adapt alot very quickly too and this made it much easier to deal with and get on wtih. I think if it had been a slow deteriation or constant bad phases with 'normal' stages in between i would find that much harder too.
Last year i also had other health problems caused by side effects form medicatino that made me very ill and the hms got much worse then and deteriated from there so i think maybe the condition could be affected by stress or the body being more run down. Maybe our minds or something in us keeps us functioning at a more normal level but then when the body is trying to deal with other stuff too it has to let the hms just do its thing becuase it can't fight both.
I also think that the immune system is more powerful than people think and that it maybe effects the hms in someway too because iv noticed that alot of people seem to get worse after they have got run down or been ill in other ways. who knows. it would be great if a dr could find a link or cause to why alot of us seem to suddenly just get worse after years of being quite stable.

[sheppeyescapee]

I've deteriorated a lot in the last couple of years, I've gone from being able to go to the gym and go on long walks (albeit with a reasonable amount of pain) to barely being able to walk to the end of my road without being in pain. My main concern is how I'm going to keep getting to and around uni.

[Livsmum]

I've gone down hill quick too, I was able to walk, trek and climb mountains, now I can't walk for more than 10 minutes without intense pain. My back always hurts, regardless of medication, my shoulders have started to sublux when I am asleep and I wake in agony, my wrists and hands are so weak I struggle to lift a cup of coffee and I have to pay someone now to do my ironing because I cannot lift the iron. Things like drying my hair, lifting wet washing, even getting something off a shelf in a supermarket, I just can't do anymore. I have had to phone someone recently to rescue me from Asda because my hips and back hurt that much I couldn't push the trolley! I hate how quickly I have gone down hill, it makes me angry because I used to be so active and independant and now I have to rely on others to do simple things... I've always had weak ankles and knees and back pain since childhood, along with migraines and IBS, but the weakness in my arms, asthma, extreme fatigue, heavy aching limbs etc, all started after my third child 3 years ago and I was diagnosed with Chronic Fatigue Syndrome. I was 32 then, this year I have added the weakness and pain in wrists, fingers, the burning sensations, pins and needles, numbness, jerks, blurred vision, palpitations, dizziness, hot flushes, cold extremities, neck pain, subluxations.... the list keeps increasing. I guess the "it's all downhill after 30" was true for me too!

[naama]

I did deteriorate quickly but I'm pleased to say that I'm making slow progress towards improving at the moment. I think in my case I went from being fit to being reasonably fit (I gave up working in a leisure centre to working in an office). I then had problems with my shoulder and was told to rest. I then got told to rest some more! I then got told I needed surgery so I rested some more. I think (and this is just my personal opinion) that because our collagen is not as strong, we deteriorate faster and it is harder to reverse that decline and to rebuild strength again. I have to accept that although I am now able to go to the gym and the pool a few times a week I am, in the words of my personal trainer, below the baseline for a generally unfit person, despite having been very fit in the past.

My big problem that I'm having to constantly battle is that when I improve a tiny bit, my expectations go up ridiculously - not quite that I can climb Everest single handedly without oxygen, but about that ridiculous given my current fitness level!! This can also lead to us a) injuring ourselves by pushing too hard and b) getting despondent because we fail to reach our ludicrous targets.