Deterioration, progressive worsening?

[Triality]

I did. Had been in low-level chronic pain for years, but once I hit 16, my physical and mental health went on a rollercoaster heading mostly downhill. I had an accident in 2005 that set off fibromyalgia, and I haven't been well since.

[littleyellowfish]

I'm so glad I found this thread, I was beginning to think I was going crazy.

The pains and aches for me started a few years ago, GP's just kept handing me painkillers so I kept on with them. Then last year as I was finishing a course at college my back got so sore and I was that wobbly I resorted to using a cane out and about as something to help support me. I wasn't too bad, just very achey and so tired all the time and I began to think I was idle. I ended up depressed thinking I was crazy or something. Roughly 6 months or so ago my back started to get worse, then my hips, knees and ankles and now my shoulders and neck, so much so that I am in constant pain and having difficulty finding medication to help ease it. I don't even recall there being a trigger. I used to take the kids and my dog for 5 mile walks every sunday and now I have to stay home while my other half takes them out as I can't even manage to the end of the road

Here's hoping we all find some relief xx

[AnnaH]

I know this is an old thread, but I just came across it and it's both encouraging and scary.

Encouraging because I thought I was the only one whose condition suddenly took a dive, after being relatively minor (albeit undiagnosed) for years. Scary because I've realised how bad it can get.

I can date my slide pretty precisely, since it was when I partially ruptured the first of both Achilles tendons. Then followed 18 months of inappropriate treatment for imagined inflammatory arthritis (including mega doses of steroids), the diagnosis mill, culminating in my GP telling me I needed to pull myself together, because my obsession about getting a diagnosis. At that point, the NHS having given up on me, and assuming I was just making a big deal about nothing, I went private.

I remember thinking, when I was diagnosed, that at least I didn't have problems with subluxations, and at least my upper body was fine. Well, since then, I've had problems with my shoulders, elbows, various joints "popping out" (albeit not full dislocations), spasms in my hands, various bits of my body going numb in the night, and then last week, my knee gave out on me as I was going downstairs, and I fell. I wasn't badly hurt, but since then I've had problems with my knee "going", and just collapsing when I put weight on it bent.

So I suspect I am deteriorating and its scary. As well as painful and I so wish I had a GP who really understood HMS, instead of constantly going on about fibromyalgia, which I now have as a secondary condition.

[kyliecoles]

Most of my decline I can put down to aging hormones and is a relatively steady rate but changing my contraceptive pill did have a very quick any scary effect.
Six years ago I developed arthritic hands and not long after I happened to change contraceptive pill. This resulted in a very quick deteriation in my neck and pelvic floor and hands, I could also feel my femur dropping in its hip socket when I was lieing on my other side. I came off it as soon as I made the connection, things improved alot but never completely, I went on to develop bursitis soon after but this hasn't been too much problem since. I now have arthritic feet as well as hands and excrutiating thumbs, bad hip and weak elbow, and arthritic spine. This has been a steady decline on the whole though recently my right thumb and hand in particular are getting very bad.

I wonder how many women have had this kind of trouble with their contraceptive pill?

I am currently, 42 with three children, a boy, 15, and twin girls, 13 and not on the pill.

[anna]

I got instant varicose veins on the pill in my early 20's, though the arthritis came later

[Superstottie]

Wow - im not going mental then?? I really thought I was going mad as since I had my Gallbladder removed in December I have been on a rather rapid decline! I have always had problems with my knees, docs etc have never been able to find anything on x ray - although I have been told that I have small, oddly shaped kneecaps etc. Bus since December I have been getting pains in most of my joints, I do usually find it worse in winter but this is unlike previous years in that I have been in a lot more pain and affecting more joints. I am currently having to pop my pelvis back every morning, along with my hips, my shoulder drops out if I relax or lift anything, my wrists, elbows and even my fingers hurt and get red and hot like my knees do. I cannot bear to sit for long as I end up in agony with my coccyx, I struggle to walk very far and am finding that just doing the shopping is wearing me out for days.

I am still living in hope that I will see an improvement when the nice weather finally gets here though, but im not sure my body will hold itself together that long!!!

[alice-emma-louise]

Does anyone know why we deteriorate?

I've been on a steady decline year by year since I was 15. I was diagnosed at 18. I can see some people have a cause of their decline (hormones, pregnancy, serious accidents or viruses) but for me I can't see a cause. The initial proper (as in ignoring the niggles throughout childhood that you only realise after diagnosis aren't "normal") manisfestation of the condition (knees at 14 then proper decline from 15) was likely the hormones which I get, but from 18 to now at 21 the decline has been more severe. Between 15 and 18 it was just pain and tendonitis - it never stopped me doing anything although I also I had quite clear fatigue issues. But the last three years have seen me in increasing pain, increasing inability to do simple things and manifestation of all the other connected issues such as bowel problems and memory issues.

The only thing that's changed is that the last three years have been my university degree and I've been living in a different city (but not in student accommodation so it's warm, dry and has good furniture etc.).

So my question is, what could have caused this continuing decline? At diagnosis I was told it was unlikely to deteriorate with age and in fact it may improve as the joints naturally seize with age but I'm clearly worsening and now I'm back at home for the summer I'm realising quite how drastic the change is even from last summer!

I'd be interested on anyone's opinion on this

Alliex

[shirleytx7]

I have been in a steady decline for a few years although more rapid lately. I am interested in a previous post about the contraceptive pill and how this may be connected as I have had more problems in different locations this spring/summer and have also gone through pill changes.

[Kattykins]

Hi

I think I am one of the older members (age wise!) and my really bad declines all coincide with major life events. Late teens/twenties growing up/moving out/the pill/serious thyroid problems involving weeks in hospital, 30's pregnancy/pneumonia/house buying, 40's house moving/stressful work and home situations (too complicated to go into here but a couple of years of mental hell), 50's losing my Dad/house move/yet more extreme stress (another sort of work related issue).

For me the declines seem to cope with extra heavy workload (new baby, house move) and stress. Which if you think about it coincides with our more minor ups and downs that we deal with by pacing.

[Fidget]

Hiya

Thank goodness! I thought I was the only one who had gone downhill so fast! It happened so quickly I thought maybe it was all in my head!
I've had very bad joint pains since I was little, spraining things very easily, my Mum even told me that when she was pregnant with me they thought I had spina bifida. Fortunately I didn't, but I was born with a hiatus hernia which is very rare in babies, and my back would make crunching noises whenever I was picked up. I had sprains all through primary school and was constantly 'going over' on my ankles. Then when I was about 14 things started getting even worse.At 16 doctors put it down to 'growing pains' but they DID X-ray my back and found my spine bent slightly to the left. They also sent me to a podiatrist to treat my fallen arches and that was the end of that as far as they were concerned. I stopped going to my podiatrist however, as she refused to acknowledge that the exercises she was giving me to treat my feet were leaving the rest of me in agony.

Things died down after that, and I became much more mobile, even getting a job as an entertainer and doing a lot of dancing! When I was 19 there were a couple of incidents involving a serious case of tendonitis in my right wrist and a very severe sprain in my right ankle. (That was an eventful night out!) Then it was back to all the usual aches and pains until three months ago, when walking became incredibly hard and painful. Sometimes I was struggling to walk so badly that it felt like I was wading through mud. I am a barmaid so of course this caused some serious problems for me. I'm now off sick, I can potter around the house a little but anything more than that and I'm in agony. I use sticks to get around for short distances and a wheelchair when I need to go any further. My doctor referred me to a rheumatologist, who I'll see at the end of this month, but I will have waited over two months for this appointment by the time it arrives! And my regular GP now just throws more useless pills at me, and just tells me to speak to the rheumy about any concerns I have, so I have given up seeing him and I'm just making do with the good 'old-fashioned' pain relief. The real problem here is money, I'm not getting sick pay from my work and I'm apparently not entitled to any benefits. Which makes me so angry because up until now I've never claimed any sort of benefit, and you would think I'd be entitled to some just this once!!
I think what's caused this flare-up was my contraceptive implant, which I had removed three days ago, so hopefully we will see an improvement soon!
Also, sorry about the looooooooong post, I've just never been able to get this off my chest to people who understand before! Thank god for you guys!

[Retro]

Hi Fidget,

There is lots of information in the Personal & Sensitive section regarding contraceptives and hormones, there's also a leaflet available from our online store on hormones. See the Access to Locked areas thread for how/when you can get access.

The implant although it's Progesterone only shouldn't have much (if any) effect on your bendyness, that's the very reason I went on it.

Lindsey

[Fidget]

Thanks Retro, I'll have a good look at those.
I'm inclined to think that it was more the serious weight gain it caused rather than the actual hormones, as I have gained a couple of stone since I've been on it and my joints really aren't happy about that! Now that it's out I'm going to get to work on losing weight. Unfortunately that's easier said than done!

Lana.

[hayles]

Hi

I think this is an old thread but can i just ask, after deteriorating did anyone get better or did you stay like that?

Ive had constant pain since last october, but have deteriorated an unbeleivable amount i think in the last 2 months, my mum said its been coming for 6 months, i have HMS and ankylosing spondylitis, and my doctor is now querying fibromyalgia.

I dislocated my shoulder on Tuesday, so had a chat with my uni tutor yesterday about an extension on assignments/exams etc and he said to seriosuly think about applying to disability living allowance (i think it was) and that im going to struggle and deteriorate...ahh thank you ha this didnt make me feel any better

I was just wondering what anyone else has found or their stories

thanks
hayley

[sheppeyescapee]

May have been DLA but more likely to have been Disabled Students Allowance. Both would probably be helpful though, DSA helps you get equipment and the help you need at university and DLA for your care/mobility needs.

[peksy86]

I declined super quickly! I noticed it first when I'd go shoping and would walk doubled over because my spine couldn't handle the weight after 2 hours of being on foot, it then went down to being 1 hour on foot then 30 mins and finally I can just abouit manage to stay on foot for 5 mins with crutches. I also got Sciatica in my left leg, in 8 months I'd say I went from being relatively mobile to having to use crutches for 3 mo nths. I am now iin a wheelchair because my upper back is going too.