New to fibromialga

[Mags1974]

Hi,I'm new on here,I have recently been to I could have fibromialga after xrays came back clear,I already have arthritis in areas but they are now saying all my other pain seems to be fibromialga,I'm currently on gabapentin and amitryptamine but feel bit frustrated as they haven't said for definite whether it is that or not?! Two doctors and an occupational therapist have said it sounds like it tho,anyhow I think I've had many symptoms now for a few years but kinda need others opinions tbh! This is all new to me and haven't heard of it until recently x

[Poppydoris]

I don't remember a specific test being done that says you have fibro, I think it was a case of they ruled everything else done so it must be fibro, foggy head I can't actually remember, I was on gabapentin but am happily plodding along on pregablin now, I do have arthritis in back, but it is the random pains for no reason on any part of body for me, joint stiffness, fatigue, feel cold all the time, generally feeling like crap, sometimes much worse than other times, , stress makes mine worse, sorry to be blunt but that is my symptoms daily, so ended up with being told I had fibro, am sure others are not all the same, good luck, hope you get answers 😊

[k737]

Hey Mgs1974

Sounds like you have it... seems to be where the doctors point when there is no answer.. I don't have it but my sister who has been recently diagnosed with it suffers from similar things to you... seems as the days go on she develops a new symptom!! she is 22 years old and has been suffering for just over a year... she has exams coming up and is not sure if she can sit them although she has already had to defer one year due to these problems.

I have recently been in touch with a friend of a friend who had early stage symptoms... miraculously she is now fine!! the ONLY person I have ever come across in the last year who has won! - she went to a Ayruvedic clinic in Sri Lanka... my sister is going to try a similar one in India or if we can find a decent one in Europe she will go there. As well as the retreat, the girl has changed her diet completely, she suggest becoming vegetarian, or pescatarian where certain fish is allowed only. I have joined my sister in becoming vegetarian and she was not sure she could do it alone but honestly when you really want something, anything is possible, its all a mind state. Hopefully my sister can go to one of these places where they can help her and I will get back to you if it works. Something else I suggest is if you get a sick/throw up feeling, get ice cubes and rub the on the back of your neck, should give you some relief, oil massages although initially hurt, help in the long term. She tries to visit a Ayurvedic place near to where we live for these massages and they seem to give slight relief for a short space of time.

Her symptoms are daily severe back/chest pains, breathing issues, numbness in her feet and hands, and as of yesterday numbness in her face! to the point where she was having difficulty talking and even smiling.

As hard as it is, you need to stay strong mentally, don't let it win!! Feel free to ask anything and I will try my best to answer.

[Mags1974 in reply to k737]

I feel for her,poor girl😔 she's doing really well to study bless her. I struggle reading anything as my concentration is ridiculous, at least I know why now! I'm really worrying wot job the job centre think I can do like this!! Your sister sounds terrible,I definitely think your sister should get as much medical advice with all that numbness in her face! Im sending positive thoughts your way xx

[k737 in reply to Mags1974]

Hey, sorry i never even received a notification so never knew there was a reply. How are you doing?? Feel like a year has gone so quick and its only got worse. We got some black seed oil which she has started to try, shall see if this makes any difference. In our experience no one in the medical industry has a clue, we have probably seen most departments. In terms of work, i hope you have found something? You can claim for PIP but my sister got rejected because according to them she is "fine and able" (i dont think they really know what fibro is) but i have disputed this and am waiting for a response. Thank you, positivity is key! I have also asked for her to be referred for CBT just to help her mentally with all the pain etc. Hope you're doing better! x