Deterioration, progressive worsening?

[Susan]

It sure seems like I have gotten worse over a years time. My search for diagnosis came after bilateral knee replacements at the end of 2008. I have bilat. hip replacements as well. Seems kinda suddenly after the rough knee surgeries my arms started hurting bad with no known injury. I couldn't figure it out. Mornings I was so stiff I felt like I had to manually move one arm with the other one...they felt tight, stiff and sore --- Did some investigating -- had back mri's and shoulder mri's etc... One doc dx'd probable hypermobility syndrome. Well then it became more evident that I have huge pelvic girdle weakness..... I've never been able to get up out of a chair without lot's of upper body work.... I always guessed it was my bad knees.....well my knees are new and I have huge huge difficulties getting up out of a chair, moving about in bed, getting in and out of cars etc. I mean I can do it -- but more like that of a 90 year old..... Slow, slow and very stiff and painful........ So my back is now painful and frankly most of me is......but with Norco and Tramadol and Baclofen I get through a day okay. I tried to go back to work after a year off because of the bizarre post-op course taking so long -- as a nurse. Two months into it I was fired because I couldn't physically keep up. They really enjoyed me and said I was an excellent nurse but they could see I was struggling and I couldn't do my work. So they let me go. I haven't ever been fired before -- it was kinda hard. So yes.....never even heard of hypermobility syndrome before --- but it all makes sense now -- I guess the surgeries triggered the "syndrome" though I've been hyperflexible most my life without issue. Weird for sure. I'm going to go to the University of California at San Francisco hopefully before January to get a more definitive diagnosis. Mine was made by rheumatology -- but I want to get checked by genetics and neuromuscular clinic. I never dislocate anything -- thankfully. Instead it rather feels like my thumbs will just snap off if I'm not careful. Life goes on......I wish you well.....

[Tabi]

Two years ago I was a tractor driver for our local lifeboat, I could sprint the half mile to the boathouse, climb up the trailer, ready the tractor and launch without any problems.
Now I use a mobility scooter
BUT most of my deterioration is CFS related. I've always been bendy, I've always have pretty bad pain, but without the CFS I could cope.
I'm hoping once it subsides I can go back to fairly normal life

[iNeko]

When I hit 20 I started to really decline rapidly (I'm 23 now) it seems to be the fatigue more than anything (although the pain and dislocations have certainly increased) - I was told it was something to do with the fact my body had stopped growing I'm getting more and more cynical in my 'old age' too, as people keep telling me (I say they don't understand my sense of humour...)

[Itigo]

I deteriorated badly once I had had my 1st baby at 30. I was just bendy before that with one dislocation of my patella at 16 and a recurrent sore back. It had healed well and never caused me problems until after a post natal fitness course. I have since had 2 surgeries to that knee.

I had 2 dodgy pregnancies, premature but halted labour in each one. Now, after my 2nd born, my knee is playing up again, my shoulder subluxes and I ache more generally. My appendix scar healed fine when I was 8, but my lateral release scar from 2 years ago is atrophic and horrid. Same for my stretch marks. I have issues with reflux and my gallbladder too. No diagnosis yet but working towards one. I always chicken out of telling a Dr the whole picture for fear of the glossing over/you're fussing remarks etc I'm used to.

[SAMMY]

Ineko.....Not ignoring you Itigo. Sorry it is that bad and my heart is with you. I understand your sense of humour!! sam

[Livsmum]

I just thought I'd pop on here, not been on in ages, had loads of un-health related issues going on.

I have had the funniest day! I say funny because I just have to laugh! Talk about fast deterioration! Since March this year I have had one thing after another!

The list so far includes; 3 prolapsed discs in my spine, mild scoliosis, muscle spasms, jerks, twisted, tilted pelvis, manky knees, subluxing coccyx, shoulders and ribs, muscle spasms and cramps in hands, slanted knee caps, tight hamstring, poor muscle tone, constant cramps in my feet, clicking, cracking and clunking joints, chronic fatigue and associated heaviness and aching of limbs, automonic dysfunction, bowel problems, migraines, asthma.... to name a few!!!!

I had a Bio-Mechanics appointment today....

Today... I add to my list... a bowed right Tibia! (she thought i had broken my leg at some point - I never have!!!! )...a subluxating right ankle, causing my foot to collapse (knock on effects are damaging my knee, causing a 1 inch leg length difference, tilting my pelvis and contributing to my back pain!) and a left foot which has a fused big toe and is "banana shaped" (the whole foot, not just the toe)!!!! That was her term, very technical eh?! She said my feet are so different I am like frankenstein's monster, made from different body parts!!!! I just have to laugh, it's all so funny!!!! No wonder I hurt all the time!

Anyway, upshot of it is, she cast my feet for insoles and is rushing them through as urgent for me as she said it will considerably help my knees and my back to get my feet back in the correct positions and hopefully will stop my ankle subluxating too.

So yes, defo deteriorating quickly and being refered to as Frankensteins Monster!!!!!

[BendyBoff]

I have got worse over the last year or so. Had a couple of episodes when I was young and then nothing for years. When I was 24 I went to the DR with back pain and then last year I was referred to a rheumy because of it. Was diagnosed in April last year and since then the length of time I can walk for before I'm in pain is getting less and less. I also find that I wake up more often with back or hip pain than I used to. It used to just be at the end of the day when I'd been walking about etc...

Is is that we are more aware of the pains etc... since we have been diagnosed whereas before I may have just ignored it now I know the reason I am more likely to focus on it so I can tell the consultant at the next visit?

xxxx

[Taz]

Wow this is a scary thread! I have noticed that I am sooooo tired in the last few years. The fatigue seems to really grab me. I too am blessed with the youth touch, I am 29 and frequently get asked for ID to buy alcohol or scratchcards. It was amazing when I joined the HMSA as I saw a lot of the symptoms of HMS were things I already had and had no explanation for. It was a real eye opener. I guess a rapid deterioration is something I have to look forward to but until then I am gooing to make the most of the mobility I have!

[Spireite]

Taz don't be scared. Knowledge is power.

At least if you know you have hms you are half way there. When I deteriorated quickly I had no idea what was going on. It was another seven years until I was diagnosed (diagnosed myself). Now I know, it's different. I would say I am improving slowly.

[Taz]

I have found that doctors know very little about HMS. And mine wont even refer me to the specialist clinic! I was worried at first that I would 'find' symptoms but I have actually found answers! Some of the seemingly obscure symptoms, like fatigue, you would never think to take notice of. I thought I was just tired all the time and was just lazy (!) but having an explanation for that is a relief. I think it is easy sometimes to just think "I'm so tired, it's just the HMS" and write things off to it. I don't want to be a martyr I want to just live my life! It does seem to be a common trend to have this rapid decline but I think I would have to cross that bridge if and when I come to it. I am pleased to have this forum!

[shedevil_kt]

hi guys
Katie here again im looking for advise due to the fact that when this started I had swelling to right knee and that was it,I then had problems walking so got crutches and I was sort of normal again. The pain got worse and then started to move to left knee and right ankle. The past week its its gotten twice as bad twice as quickly I can not do stairs full stop, I could not get out of bed due to back, knee and migraine which is now constant . Today I hoovered and went up and down a flight of stairs twice and fell to pieces on the ride home my back seized up which made breathing hard (I have asthma) and knee was going into painful spasms I put ice pack on knee and deep heat on back but just walking from car to house had me crying my eyes out.

Has this happened to anyone else at this quick a rate I mean is it normal or should I go to doctors again and say from the start to now im like a different person and in last week I have deteriorated at twice the speed?

Advice needed ASAP

Many Thanks Katie xx :'O(
modnote: merged into existing thread

[shedevil_kt]

went to hospital ankle just swollen but now have to see specialist for back as they think i have injured my back All i need 2 weeks before holiday

[Stone]

That does sound pretty fast, but then it's quite common to have injuries 'move around' as you try to protect it but overstrain a different body part. Crutches can be quite hard on the body, especially when you're not used to them - it's probably sensible to rest as much as you can until you feel a bit better. Try and remember to take it easy!

Stone

[Lollypop]

Wow I've only just came across this post.
This is scry stuff.
I am really worried that I am in a current downhill spiral. As it's been nearly a year since most of these posts, I wonder if there is any change?
In jan I started getting ill, funnily this came on after I used to do a lot of pole dancing (only for physical strength) since then I have been in constant pain. been on strong pain meds and other things and still can't cope, but like you all feeling really week at the legs and finding it hard to stand most of the time. unless I have dislocated/sublex my knees. then forget it, can't barely walk or move. walking anywhere causes intense pain, but I don't think my new gp understands, my pain even on the tablets. She has referred me to rhumy and carpal tunnel surgens I have 6 children and my husband has just given up work to look after me and the kids. I am in denial. Even reading the post you all have made, makes me feel like I am not sure if it's in my head? I can't stand still for any legnth of time as I just ache and my legs feel so weak. then the tension sets in and my bones in my back andarms legs feet ect.. start to kill ache and I feel exhausted..
Would any of you discribe your symptoms like this?
Lori :@)

[kayle_d]

Wow, such an interesting thread!!
I have also deteriorated quickly, but no where need as bad as most of you! I found it getting worse after starting uni when I became ill just when I started and had to rest for about a month. That was 2 years ago this month!! (I was just turning 19 at the time)

I've deteriorated very fast this summer after working which involved a lot of standing caused all my tendons to become inflamed and after having to rest (and give up the job) I found things have got a whole lot worse. I'm now finding even sitting very painful but I can still walk but can't stand for longer than 5 mins... so I'm ok if I keep moving lol. I'm getting daily dislocations now. I think its all down to my muscles deteriorating so there isn't really anything holding my joints at the moment. But my muscles are too weak and fatigued to try and strengthen them up.

I've now decided to order some whey protein to see if that will help my muscles, which in turn should help my joints (well thats what I'm hoping anyway!) but its just a little experiment and won't do any harm as I've "shrunk" anyway so I'm not concerned that it might make me gain a little weight.

I'm really happy that I decided to party so much when I was about 15/16 as I can't do anything like that now. But I do dwell on the fact that there is some things that I will never be able to do, and I find it impacts massively mentally when you are deteriorating.

I find I now how an automated response to when people ask me how I am... usually along the lines of 'yeah I'm ok', I just feel like people I speak to regularly would get fed up with me keep saying that I'm in a lot of pain and really fed up.

Kayleigh