Fibromyalgia Action UK
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has anyone seen a Brain specialist (clinical neurophyscologist)

Hi Dollies,

hows everyone coping today???

just wandered if any of you have the experience and what goes on?

Since seeing the Neurologist who recomended me seeing 'apparently' a very good Brain specialist Steve Kemp ?? as i am a bit messed up and wants to try and 're tune' i have no idea because i believe once your messed up you are and there is no turning back!

as he stroked the feather i watched but knew doing it did not tickle or anything kinda nothing much but said i could feel it . the tuning fork on left foot could not feel would not mind when he did it was waiting for him to say something lol but the right foot i could tell.

I said i felt like sparks have flown all over my body with the nerves (have nervce compression on spinal cord on nerves) how on earth do you know whats going on anyway when on so many meds!! lol

Really weird because nothing felt ticklish everything felt bland or it could be physcological ( i think they should do it with your eyes shut and ask where they are touching) there could be people who are worried of outcomes.

Ms is out and Brain Scan Normal. I did get instantly Benign Hypermobility Syndrom as i am extremely bendy wendy!!

if i get arm tapped or like my hubby picked my leg off his on sofa i nearly hit roof (this is obviously down to the nervous system) i have to use my keys to knock on a door of any house as my hands are too sensitive? In the heat i came out all in blotches up my arm (not troublesome at all) but get very heavy and fatigue and sweat more than i used to and so fidgety.

I not sure how some one who not in your body can diagnose such a complex thing . I stil on/ff think Ms becaues of months or wks of things and then when neck went i finaly triggered after a few wks that i was getting new symptoms on Thursdays! and my periods are herendous with new or old symptoms this year i feel more weakness, strength, burning my face has had some real trigger problems and burning jaw and aching and my cheek bones.. i am pretty fed up i guess of getting pushed around and you feel like they think its in your head at times

I as i have mentioned take Lyrcria which personaly is a 'Magic pill' for me after trying many things even Tramadol, codeine, Amitryptiline, Neurontin and with me working i have to have something ( i feel half normal) but every day is unpredictable (VERY) and depends on weather etc aswell as noticed.

I hate the cold weather i numb very easily and cannot feel my left foot mainly it flops and my hands and arms so much that i can not use hands to use my debit card as too numb, or i get a heavy leg. I cannot understand how one minute can feel ok and the next laid up.

Instance saturday went White Rose to get my 11yr old some prom shoes and i was eager to finish and go after passing all the shops almost. slow potter round. feels like a differnt world for some reason now a days rather than an enjoyable experience.

I have had a lot of issues during my lifetime like many of you have. sprained ankles and broken bones, neck always going, every pregnancy in hospital, with one Very Rare form of glandular fever (very ill for months) IBS , Rapid pulse, kindney infections, blood loss, ruptured membrames (not nice as you can feel the baby as if on your skin) cried so much with that. premature births, Dry, socket, root canals, bad case of flu, depression, ear infections, back pains, hernias, MRI's 5 operations ohhh so much more some pretty personal too. all adds up why we get fibromyalgia i guess in the end. I am not sure what the clinical physcologist is meant to do or achieve!! ok so the BHMS adds to the issues but my concern is how long the compression has gone on how in 2yrs has everything triggered whats triggered it and why.. 'apparently ppl with BHMS should not really have ops or injections due to our soft ligaments and lack of collagen ( i always get water infections and have protein in it) my knuckles are slowly mishaping. Sooooo anyone any ideas especially those of you who had for years and may know more because everytime in past been ill and recover i never thought anything of it but 2yrs is a long time to be constant suffering.. should i accept it now or fight more lol xxxxhuggles

6 Replies

yeah ive had the brain scans n all the other shit that goes with having fibro.knocking my head against a wall.Still no further forward.huggles to ya hunni.xxxxxx


wow Katie, so pretty much more or less will say live with it ?! why did i go to such lengths of all that rubbish in . I should of put plain and simple!

I think it is because i am adament with MS because of my medical history and Doctors say fibro lol but not actually diagnosing me with Fm as yet!! apart from BHMS which Neurologist diagnosed but that has no relevance as he said i had that all my life so why should that just appear full on 2yrs ago.. there is more to it end of day and i will fight for everything because i have been correct so far in other problems i had and i was RIGHT!! i was shoved aside and asked billions of Q's and felt like an idiot crying for help!!! to have to go back to theatre and had nerves trapped in screws!!!! ( i have titanium in for hernia repair) rushed in with 3 999's and even the paramedics saw me how many times during my night in A & E been left side ward with no relief ... and all the surgeon did was come back after surgery scaring the hell out of my husband in fear of worst (as they dont normally come in their theatre uniform) and not 1 APOLOGY ( i would of been in a wheel chair for rest of my life had i not been persistant ! there rant over lol .. i have read so much on my history now this year and indepths on the illness and maybe there is a % i am wrong but i do need seriously convicing. I will keep banging my head and i will annoy the hell out of all of them as much as i like my Dr's i go for 5 mins to be like a diary and thats it and come home and suffer day in and day out like all us suferers do one has a CLUE .. I wish there was a FM person Neurologist or brainspecialist STILL WORKING if there is one who can understand.

I have a friend who's mum died of MS in her 40's and she is a qualified nurse and even agrees what she seen but i can not disclose any of that information! just like you can not give your medication to anyone who not been prescribed . xxxx THanks for wigging my rantles i go on a lot hahahaahha xxxxxxxxx i touch type probably why fluffy huggles


hi i saw a nuero man and he sen tme for a spinal tap. i cannot be numbed or knocked out by any aneasthetic for more than a few minutes this a new thing.. and the idjeet who did it stabbed five times it was so painful because of no local .. and in th eend he got blood in the sample so they wanted to do it again i have refused but i too know there is something other than fibro going wrong and cant get it thru i am going blind in left eye get a film over it or double vison had cataracts out ages ago so not that. i am going deaf in left ear left shin bones get unbearably sore and my left leg swells up iam in heart failure but i dont think that is the problem..... dont normally add my probs tosomeone elses moment but just felt the need do sorry about that hope you get real help soon petal



If any of you have metal in your bodies I strongly suggest trying to get a MELISA test done:

All the best

Peachy xxx


I asked my doctors ages ago about Melissa blood test and they refused and said for me to do privately, so i still have to sort it out as my issues started the day i had titanium put in !! Its ruined my 2 yrs so far with my cleaning business . Xxxx

Have you had one done??


Yes I had two Ti discs implanted to replace C4/5 and c5/6 cervical discs two years ago. I had the test prior to having the surgery and came up as mildy positive in my reaction to Ti but I would like another as your sensitivity can rise post implants.

Do you have insurance?


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