Please help...

Posted , 3 users are following.

For the past three years plus I have felt unwell with being really tired, pain and spasms in my left eye and pain and weakness in my legs and arms but more in my left side. I also experienced occasional shakes.I was seen by specialist and told I had fibromyalgia and was given pain relief and vitamin D as that was low but can't take the other meds to help as got crohns.

Things have not improved but slowly got worse especially over The past few months my symptoms have increased and become hard to cope with, I get horrible cramps in my legs, pins and needles and hot tingly feelings that affect different parts of my body but seem to be more in my fingers and feet.

The dead leg episodes are happening everyday now and sometimes my arm which keeps waking me up in the night aswell.

My legs shake when using them more my left one which makes me feel very unsteady. My left arm and hand shake when in a certain position and every now and then get twitches and jolts especially in my left arm.

My Stiffness is causing a lot of problems with doing little things like brushing my teeth, picking up things doing my hair etc causing me to get very frustrated.

My pain is now more in my legs and back but have had in the past pain and spasms in my chest like being squashed, I was sent for X-ray which showed my lungs were not deflating fully but doctor said it's nothing to worry about.

My balance has also got a lot worse as I keep stumbling and have fallen a few times.

My tiredness is the worst and I don't know how to explain it as it gets worse as the day goes on and I have to go to sleep....Never felt tiredness like it.

Had to go hospital as My back in pieces and can't control my poo as can't feel it....hospital referred me to specialist again!

Had a nasty turn didn't know what was happening as My left side was a lot weakar than usual, I was very scared as couldn't speak properly as my speech was slurred and slow and my head felt weird I felt very confused. Prior to this I had headaches and had four falls in two days as my balance was worse than usual but put it down to my fibro....again got to wait for consultation.

Took eight days to be able to speak better but here we go again two weeks later and speech not right again...started with head and eye pain again and felt extremely tired. My words came out slow and stumbled with me pausing to get out my words. my eye kept spasm and my left leg had a mind of its own and kept shaking. My back and legs really hurt and my feet were really cold with pins and needles again.

Want to rip my left arm off due to the weird feeling and hand keeps curling in.

Having a bit better day with my speech only pausing a few times to get out my words but seems to be happening everyday now...with tingling, cold feet, spasms, left eye pain and blurry, jolting arm and shaky legs not to mention the tiredness and head feeling full of cotton wool. Trying to stay positive and adjust and hopefully get some help from specialist.

Does anyone have any advice please?

0 likes, 7 replies

7 Replies

  • Posted

    there is medication to help with the bowel movement and the tiredness. The other symptoms you mention I sympathise with as I suffer from this too but this is due to my having MS which I dont think you have. you must keep pestering your GP for referalls and I know how frustrating this can be as it took 5 years to get my dx. Just persevere and try not to let it get you down which is easy to say I know but eventually you will get to the root cause
    • Posted

      Thank you for your reply Steven do you think it's just my fibromyalgia? I think it is MS due to my speech and how I've deteriorated in over three years can I ask why you don't think it is...would help ease my mind thank you

    • Posted

      Well I dont think it is just down to your fibromyalgia and the only reason I say its not MS is that it is rare for it to cause speech problems and the speed of the problems affecting you would indicate PPMS if you had it. you say you also have crohns which give MS type symptoms. You should not take my word for it Jo as I can only give an opinion and you need a neurologist to decide what is the cause. You certainly are not having a fun time and the worry of what is causing it all will make it worse as stress will do that to any neurological problem.

      Please try and see a neurologist and get an MRI plus spinal tap at the same time in order to rule in/out MS

    • Posted

      Hi Steven

      Yes it's been a long road lol, it's not my crohns they ruled that out as had it for 25 years and it's just so annoying that everything takes so long to do tests specialist etc. I had MRI and shows change in Myelin and got neurologist on 22nd...just taking each day as it comes as everyday different but I am staying positive even thou hard sometimes. Hope your ok

    • Posted

      Hi Jo good to hear you are staying positive. Yep getting progress in the NHS could drive a saint insane.

      Fell off my mobility scooter last Friday and bust a rib, this is the third time I have done it but the damn pain when the muscle contracts is excrutiating.

    • Posted

      Omg that's not good hope you have help..yes the NHS are hard work when you just want a magic pill to make all back to normal but know that doesn't happen...you take care and I'll let you know how I get on at neurologist on 22nd.

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