Hiya Everyone,

I've yet to go to the hospital but for nearly a year now I have been feeling dreadful my symptoms consist of headaches, flickering eye lids, numb hands or pins and needles, back ache, pain in wrists, finger joints, shoulders, dizziness, forgetfulness, kids asking for things I say yes but I forget to do it, shooting pains in my right foot, my left leg goes numb sometimes, I feel like I've been to the gym and every muscle in my body ache from head to toe, ankle joint pain sometimes, knee pops out on left legs, hairs falling out, neck ache head feels so heavy, tiredness, feeling low and getting frustrated as I never know how I'm going to feel each day. I've not been diagnosed I've to go for my first appointment in August and was wondering if anyone experienced these symptoms as fibromyalgia and m.e or m.s have been mentioned and was wondering if anyone was experiencing the same who had been diagnosed. I've been on anti depressants for a year now with the doctor thinking I had depression.

Thankyou for reading my rather long message, just feeling a lot helpless atm.

Gemma :)

20 Replies

  • Also my legs twitched in the night and my feet burn up.

  • Hello Gemma and welcome!

    Sorry you are experiencing all these symptoms... they do indeed sound like many of the symptoms I experience with fibromyalgia.

    You do not say what department your appointment at the hospital is with... is it to see a rheumatologist?

    They will probably do the tender point test.... where they press on certain parts of your body and they will feel very sore.

    They may also do blood tests and scans, but they will have to rule out other conditions before can diagnose fibromyalgia.

    Have you looked on fibroaction.org (the mother website for this forum) there is lots of useful information including a list of all the numerous symptoms one might experience with fibromyalgia.

    If you have any other questions, then you will probably find someone here who can help you, hope your hospital appointment goes well... May I suggest that you write a list of all your symptoms to take with you when you go... because I often find that I forget so much stuff ( the dreaded "fibrofog"!) and maybe ask a friend or family member to go with you for support, they may think of questions to ask that you don't think of.

    Let us know how you get on xxx

  • Thankyou for my welcome, and sorry to hear of your fibro it's dreadful wouldn't wish it on anyone, I feel like an old woman it's so frustrating if that's what it is for me, yeah it's with the rheumatology dept ok thats a good idea as I always come home from the Drs and think omg I forgot to tell her this and that fibro fog, something new to me, but would explain a lot. I'm taking my mum with me and will keep the diary now, I will let you know how I get on although it maybe a long while before I actually get a diagnosis, the doctors have taken every blood test they can do so will the hospital have to repeat them? Thankyou for replying and the advice :)

  • Hello and welome,

    Yes, Its better to write everything down, It helps when we meet up with the doctor.

    Good luck with the results, pls let us know how you get on.

    Huge hugs xxx

  • Thankyou will do 👍 done today and will post my results tbh I'm not expecting a diagnosis in August but will keep you all posted thankyou :)

  • You are describing me to the tee i understand what your going throug xx

  • I'm sorry to hear of your struggle too, it's a terrible condition, never in my wildest dreams did I ever think I would end up like this at 31 years old I feel so useless, I hope you have had a diagnosis and are on your road to coping better with this awful awful condition. I feel I'm at the start of a long journey :-/ whatever the outcome. Hope your having a good day 😀

  • Welcome to the forum and it is wonderful to make your acquaintance. I genuinely hope that you find the forum useful, informative and loads of fun! I am so sorry to read that you are suffering and struggling with al of these symptoms and I genuinely hope that you can find the answers that you so desperately desire and deserve.

    To ascertain whether you have Fibro or not you will really need to have your hospital appointments as they will need to run tests to exclude other illnesses prior to diagnosing Fibro unfortunately. I want to genuinely wish you all the best of luck.

    Al my hopes and dreams for you


  • Thankyou Ken :)

  • Welcome, I have experienced most of what you mention with the fibro over the years. I hope it is rheumatology or neurology appt you atr attending, they will be able to confirm diagnosis and you will at least know what you are dealing with. Then the doctors can figure a plan of action ie drugs, physio, pain clinic etc. Good luck, I hope things go well for you.

  • Thankyou yes rhuemoltologist thankfully :)

  • Hi gemmakiz, so sorry to hear how poorly you are feeling. You say you've had lots of blood tests, did they check your levels of B12, ferritin and folate? If these are low they will certainly make everything else feel worse. The numbness and pins and needles and mental confusion are often linked to low B12. Just hoping you soon feel better. Best wishes MariLiz

  • I'm v unsure what blood tests they have done but I've been 5 times and the last time I went the Dr said this is the last possible blood test we can do, when result came back normal I was refered to rhuemoltologist :)

  • Hi Gemmakiz

    Sounds like you may have more than fibro going on there. I really feel for you ;-(

    I had a diagnosis from the Rheumatologist on the day. He did one or two extra blood tests that I have never heard of and can't remember what they were, but I did not have to go through the whole process again.

    He did not give me any medication as GP is very good and has that in hand.

    Just out of interest - are your antidepressants nortryptilline - if that is how you spell it - very similar to amitryptiline?

    I was given those a couple of years ago and they gave me headache, pins and needles, dizziness, really bad memory problems and very high blood pressure.

    This only came to light when I joined an exercise referral class and he did a check on his machine on the first day - told me he would not sign me up until I went to the GP as my blood pressure was so high.

    I had no idea - any way nurse confirmed it - 2 weeks later - same result - so I sat myself down and had a think as I had never suffered with blood pressure in the past.

    During 2 weeks annual leave from work, I decided to stop with the nortriptyline - no more headaches or pins and needles - nurse said BP normal - hey presto - I had proved they were the problem and changed to amitryptiline which I am still taking xx

    Just a thought ;-)

    August is a long way off - can't you push for a cancellation xx

  • I was on citralapram I'm on fluxateine now but tbh I stopped taking it for 3 months to detox of any drugs to see how I felt as I know this isn't right but didn't want the Drs saying it was a side effect it's been hard but I'm back on them now so not crying as much. That would be fantastic is they would diagnose me that day and then at least I can go back to the Drs for help I have co-coda mol and took 2 last night just to sleep as my muscles hurt so much as I'd dared to clean my children's bedrooms lol. I have been 5 times for blood tests and the last set were the last blood tests Drs could do :-/ xx

  • Fibro is diagnosed on medical history and a touch point test., no blood test standard yet so it would not show up.

  • Thank you :) here hoping for an answer soon :)

  • Hi Gemma , this is the first time I have posted on here , all the symptoms you describe are very much the same as mine although I have them more in my arms and not my looks so much , I have been told I have syringomyelia which is a very rare illness that's means I have what they call a syrinx in my spinal cord that should not be there ! They found this on a mri this too is an incurable illness and the pain is so bad , not many doctors have heard of this as it is so rare but it might be worth looking it up and see what you think ! Hope things get sorted for you

  • Thank you will do :) me too, sorry to hear of your illness it's so frustrating hope your finding ways to cope better with your illness too :)

  • I have all your symptoms and more unfortunately 😅i have fibro/ me depression and anxiety to xx

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