Fibromyalgia Action UK
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hello, just thought i would introduce myself

hi there,

I have had a dx of fibro for 3 years, November came and i found it hard to walk with dizy spells, blurred vision and loss of feeling in my feet, legs and hands.

It was really embarrassing as i looked like i was walking on a spring board and my tremors were really bad. I got sent to a neuro and he gave me a brain mri to exclude ms, that came back clear i was shocked as i really thought it was. I wanted a spine one but he wouldnt do it, so was not happy.

I have been referd to a cfs clinic which is next saturday.

Has anyone been to one? I just would like to know what they do.

I am used to all the pain but its the loss of feeling and fuzzy tingling feelings that are worse at the minute.

I am on amitriplyn 150mg, gabapentin 1800mg and cocodamol.

I always feel worse in summer especially with fatigue.

Thankyou for reading kel xx

7 Replies

Hi I know this will sound awful but it is nice to hear that somebody else as tremors as I was thinking it was only me that was affected that way. Sometimes I shake that much I can,t hold a knife or fork and cannot bend to reach the plate. It really is a horrible feeling. I did have a MRI scan about five years ago after having Fibro for about 10 years before that and all the things that go with it and they discovered I had 3 worn discs. I thought at last they would be able to help me with at least something but wrong again they said it shouldn,t cause me any problems - just part of getting older. I also get very bad blurred vision One of my earlier doctors said he believed that Fibromyalgia CFS and ME were all related but still no cure for any of them. I can only assume that the clinic you are going to will get you all checked out again. I have lost count of the number of blood tests etc I have had over the years only to be told they are OK so therefore a lot of Doctors assume I am OK also. I used to pray one of the tests would come back showing something wrong but only my MRI scan did that and they say they can,t do anything. I went 18 weeks at the time without being to sit down and and had to spend most of my time in bed which was also a very painful experience. I have tried Amitriplyn in the past but didn,t do much for me after a while. Now I am on Co-Cocodamol, Oxazapam, Dicloflec, Tramadol and a very low dose of Steroids. Sometimes they mask the pain for a while but its there underneath. Glad you wrote on this site because its great to hear from other sufferers as it doesn,t make one feel so alone with the condition. Lets hope they find a cure sooner rather than later as it as already taken away a big part of my life. Don,t mean to sound morbid but I can only speak for myself. Everybody is different. Hope you go on OK at the clinic and I really wish you all the best. Keep Smiling


Hi Pat,

I am so glad too that there are other people with legs like mine.

It is so embarrasing when my tremors are bad, i look like i am drunk most of the time.

So sorry if this sounds wrong, but i was hoping something would show in my brain mri like MS as people understood more when they thought i ahd MS. People think i should now get on with it and even go back to work, but they just dont get it. Its doesnt matter to me what label it is as i have these symptoms all day every day. Hope you get what i mean.

Ther are two other symptoms i havent mentioned that i have everday, My ears feel like they have cottonwool stuffed in them and i cannot stand any noise, but i cannot hear what people say so i have to lip read, its weird.

Also my ribs are constantly hurting, i never get any releif from them and when they flare even more its like a crushing sickly pain that no tablets will work.

I have so many more symptoms and could sit here all day and write.

Thankyou for your reply it is so good to talk to people who undrestand.

love kel xx


I also suffer terrible tremors,my whole body shakes uncrontrollably.its awful and leaves me exhausted.

good luck at the clinic



Hi there Tiggerfan,

It is horrible and so embarrasing isnt it.

It too leaves me exhausted as it takes so long to do simple things. Before xmas i couldnt control them in my legs and it was awful, not being able to control my body it was quite scary.

Thank you for your reply its good to know that there are poeple that understand.

kel xxx


all the best love, keep yer chin up and wish you luck x


Thankyou Dawny xxx


Welcome Pat just remember you are not alone always someone here to listen


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