Is this fibro

Hi there i was wondering if people have the same symptoms as me from the last few weeks

been poorly since December with lots of the fibro symotoms been to a rhematoigist who said expected fibro, but wants to look into myotonic illness,

3 weeks ago i got worse i could hardly walk kept falling over as me left leg kept going num and started with muscle spashams in tops arms and legs me docter was worred so asked for a emergency apointment to see neuroligist i went and he said fibro he did say i have muscle weekness and took a muscle blood test but recons it would come back normal.

My docter has said before all the falls and spashams started he thinks fibro but the worse case he has seen

So with fibro do anyone expriance falls from numness?

my fibro has got worse gradually and not had a brake has anyones got worse over time and had no reamistons?

Some days i am asleep for most of it and this makes me more tired dose this happen.

Wondered if anyone could share there story for the worst parts of your fibro sorry you may not want to bring this up but i would be most gratefull as i am sure like youlot you are in alot of pain.

Sorry about spelling thanks for reading

9 Replies

  • I am very unsteady when walking and have had many falls, I have no medical training but it may be worth asking to have vitamin D test, I have nerve damage due to lack of this. Wishing you all the best. Lou x

  • Hi lou60

    I am really unsteady on my feet had blood tests done in July which put my vitD as 55 nmoI/L is this ok.


  • I really don't know, my result was very low and I just go along with what I'm told by my GP. I am now becoming more active in my own care as I have been inclined to 'go with the flow'. Ask your GP or practice nurse what the results mean. All the best. Lou xx

  • Just found my info, my level was 17 very low, 55 is within normal range this can change quite rapidly, I was on supplement for months got the ok reading, then on the next test was low again so now back on the D3 indefinitely, worth getting checked again. Lou xxx

  • Sorry just seen your reply.

    55 is far too low.

    My endocrinologist says that my minimum target is at LEAST 75 nmmols. However the blood reports states that at 120 nnomols consider reducing vit D.

    I advise getting in touch with the vit D Council for more info.

    Sometimes people have to have vit D injections to make sure vit D is absorbed.

  • If you take vit D you also need calcium and it is important that you have regular blood tests to check calcium levels.

  • No too low.

    Log onto Vitamin D council for newsletters etc.

    You need a bone profile blood test and dexa scan.

    Some meds can cause vit D deficiency disorder.

    Good luck .

  • Hi sparkleblue

    I am so sorry to read that you are experiencing such falls, and I genuinely hope that you can find some resolution and relief to this issue. I use a tri-walker as I am very unsteady on my feet. I also have sciatic nerve damage which doesn't help the situation with my Fibro.

    I would personally keep going back and making a nuisance of yourself until you get some answers? It is what I always do! I want to wish you all the best of luck.

    Take care

    Ken x

  • So sorry to hear what you have been going through. The falling over and lack of balance must be very frightening for you. I have pushed lately at the doctors and have at last been referred to a physio who gave me several exercises to do and also said that the muscles surrounding the joints in my spine were so sold with spasm that he couldn;t actually feel the joints in some places. When the exercises had only a small amount of success he decided to refer me for Hydrotherapy which I started for the first time as it is supposedly more effective doing the exercises in warm water, I must say I was absolutely exhausted when I got back and had to go to bed and I am still on another planet today but overall I think the pain seems easier so I am going to keep on going in the hope of some respite. I noticed that with some of the exercises I was having great difficultly balancing on the one side which is the side where the muscles are in spasm so I had to take the exercises on that side much more slowly. I have the opposite problem than you with insomnia even though most of the time I feel so exhausted I can't believe I am unable to sleep. Others have reported that they sleep alot but aren;t refreshed when they wake up and that is definately a symptom of fibro and other things like ME. My legs often have a funny sensation in them just as though there are tiny bubbles going through them and on those days I find my walking isn;t brilliant.

    I do hope that they can do something to help relieve some of your symptoms, let us know how you get on.x

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