First time

I've never written a post of any kind before but am at my wits end.

I haven't been diagnosed as yet and tests are ongoing. Could my symptoms be fibromyalgia? Heavy head and chest sweats the minute I wake up and if I exert myself in any way. Muscle stiffness in hips,buttocks and legs(no joint pain except inner elbows ,fingers and wrists) For the last 6 months have had neck,shoulder and clavicle pain. Am only good for a couple of hours in the day as the tiredness is overwhelming. I'm 59 and have had to give up my part time job(which I loved)

I've had a cervical spine MRI but nothing has shown. Rheum consultant says apart from vit d a bit low nothing showing in bloods. I was diagnosed with crohns 15 yrs ago but is good at the moment. Both my calf muscles have torn on separate occasions just with making the bed(going on my tiptoes) and walking up the slightest of slopes! Been prescribed gabapentin and now feel drunk. Sorry to drone on can anyone help please?? Feel scared as to what it might be.

12 Replies

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  • Hello Didoliz and welcome.....There seems to be an indication that it may be fibro as your symptoms are similar. Glad you have on going medical support. Does your GP know how anxious you feel and how Gabapentin is affecting you? It may be an idea to let them know.. There is lots of useful information on here that I am sure you will find useful. We are a friendly lot of fibro peeps and love a good laugh as well as supporting each other through bad times. I hope you are able to get a diagnosis soon so you can then begin to come to terms with fibro and find what meds suit you.....You are not alone any more with this you just have to talk and we will listen and help all we can....Gentle Hugs xx

  • Thank you so much for your quick reply. I have discussed the anxiety with GP but feel that my symptoms are causing it not the other way round. I'm really a happy soul usually and love my life except for not knowing what is going on with my debilitating body.

  • Fibro is one of those conditions which affects us all so differently as you will see from the posts here. Many of us use distraction therapy.....drawing, puzzles,some sort of needlework, reading and those wonderful colouring books that seem to all the rage at present..anything easy to take our minds off the pain and fatigue....I hope your day is as pain free as possible....x

  • Morning and Welcome to our friendly forum Didoliz - sorry to hear you are going through it at the minute

    Has your GP not referred you to rheumatologist yet if not I would be asking them to - as they are the ones who know the signs and symptoms of Fibro.

    The tests you've had so far with your GP are to rule out other conditions you may have/or not have.

    Wishing you the very best for a successful outcome - do keep in touch to let us know how you get on. 😘🤗

  • Hello Toolie. I have seen the rheumatologist a couple of times. He has taken bloods. The first came back with inflammatory markers a little high and low vit d. He gave me a steroid injection and suggested pregabalon and to go back in 6 weeks. Go put me on gabapentin cos the other too expensive she said. Things seem to be getting worse on a daily basis. Now top of my right thigh weak. I feel it's all very scary stuff. It's not so much the pain it's the feeling of weakness and tiredness and not knowing that bothers me.

  • Hi Didoliz sorry only just getting back to you but I've been to theatre.

    Problem with steroid injections is you can only have them three times - yes it helps but in the long run you are still going to be in pain.

    I thought I had polymyalgia due to having spondylitis as you can get it when you have spondylitis but GP ruled it out.

    Which is probably why the rheumatologist has taken your bloods in the first place to rule out these conditions.

    I had low vitD too having found out in December I am also hyperthyroid - I now take VitD3 along with Carbimazole and after a month of taking VitD3 and having bloods done it has gone up - take a look at thyroid uk site look up the symptoms for Hyper and Hypo if you think you match either of them go back to GP and ask for Thyroid function test if they haven't already done this.

    Keep in touch and let me know how you get on. Take care hun 😘😘🤗🤗

  • Have you thought about it being Polmyalgia very painful in hips and general your in right age bracket or menopause can be very achy . It could be fibro xx

  • Haven't thought.will check it out though. It's the neck thing I can't stand. Thanks for your reply x

  • I think it's probably fibro but ask about a blood test for polymyagia as that's treatable and in most cases after a couple of years or so it goes that's most cases . Ix

  • Hi Didoliz

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:

    fmauk.org/

    I am so genuinely sorry to read of how you are struggling but it can take a bit of time to ascertain a Fibro diagnosis unfortunately. I truly hope that you can get a diagnosis one way or the other shortly. I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • Thank you so much,I really appreciate your reply .you all seem so friendly x

  • Good luck my friend x

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