living with pain for 8 years. no one is taking me seriously

8 years ago when i was 20 and at university i began to get shooting pains in my legs, and overly clicky knees and i put it down to overdoing it at yoga! Months passed and the pain (only occassional at this stage) seemed to be getting more frequent so i went to my gp and she told me i just needed to build up the muscle around my knees and my thighs. (I was a waitress at this point and thought i’m running around on my feet all day - my legs should be made of steel!) Anyhow, she gave me some tips on exercise and sent me on my way. Jump forward a couple years later and the pain is progrssively worse, i now also have what they say is sciatica - a horrible sharp ‘nervey’ feeling down one side of my body and my joints pop and click all the time! By this point i’m in agony most days! I’ll finish work and i’ll be literally crippled, unable to walk up and down stairs and generally just be mobile until i have plenty of rest! When its a good day i’ll get the odd twinge or dull ache or restless legs and its bareable but a bad day is getting me more down and frustrated. I went to the gp again and this time she sent me to a physio who told me my lower spine didnt move - made sense as my lower back was becoming stiffer and stiffer - almost like it had spread from my knees up to my back… Did a bit of physio for a few weeks and then they sent me on my way… again. Jump forward a couple more years to now and i’m on the brink of losing it! The last couple of years especially have been the hardest. I’m constantly tired…i’ll go to bed and have no recollection of falling asleep. My legs and knees ache so much i can;t walk . I can’t sit down on the floor without becoming incredibly stiff and unable to get up without help or effort. Going up and down stairs is a struggle even on my good days. They feel heavy and my knees feel weak. Chores are increasingly difficult to complete without suffering afterwards! The pain has now gone to my elbows and now my wrists and i feel the need to keep my arms as straight as possible because it actually hurts to have them bent. Its now getting to the point where even rest whilst i’m sleeping is doing no good as i’m waking up stiff and achy. I’ve been to a chiroprator recently and he was baffled with me…he couldn’t understand how my muscles were persistently so weak!

I thought it was arthritus but having been to my gp again recently and been given blood tests and a pelvic xray they say they can rule that out. My current gp just tells me its chronic pain and some people just get this with no reasoning behind it! I’m seeing a Rheumatologist in a few weeks having begged him to do something else for me but i’ve got this horrible feeling it could be ms. It just all adds up, if i think about it my balance has been a little off the last year or so, i’ve always suffered from dizzy spells and my short term memory over the last 5 years has been awful! Not to mention the unbearable aches and pains i’ve had over the last 8 years. I just don’t get it… I’m 28, have an active(ish) lifelstyle, always walking, my muscles shoudn’t be weak! I shouldn’t be this tired! Its taking over my life and i feel no one is taking me seriously, my gp is hesitant to do anything more for me but i can’t live like this any longer! Please get in touch, any advice would be appreciated. Do you think its ms? Am i going crazy?

Has anyone mentioned fibromyalgia? A lot of your symptoms sound like it could be. Hopefully your rheumatologist will be able to diagnose you if it is. Hope you get the help you need. Deb

Having read your history, my first thought was that Rheumatology would be a good first call, as joint problems are far more likely to be associated with some sort of Rheumatology spectrum condition than with MS, which is a nerve thing. So I was pleased to read on that you’re scheduled to see a Rheumy, as that seems like a good first bet.

MS does not directly attack joints, although it’s possible that over the long term, changes in gait and muscle tone, caused by problems with nerve transmission, might put extra strain on the joints.

I’m a diagnosed person, but my neurologist totally dismisses joint pain as anything to do with MS! I’m not sure I agree with him, as I’ve had full Rheumatology screening (twice!), which didn’t show up anything.

However, I do accept that MS doesn’t directly cause joint pain, and that if it somehow has with me, it’s probably secondary to other stuff that’s going on, that has put more load on the joints.


Hello and welcome :slight_smile: Like Tina, I suspect that rheumatology is the place to start. Hopefully they’ll be able to diagnose (and help with) it straightaway, but if they don’t know what it is, it would be sensible to see a neurologist. Tbh, it doesn’t sound much like MS to me, but there are plenty of other neuro conditions that it nay fit with. I hope you get some answers soon. Karen x