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Fibromyalgia Action UK

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please read below need advice stories thank u 4 ya time!

justlilme profile image
8 Replies

hey there i have been havin probs since 3 mc feb poor balamce inetense pain everywhere falls stumbles MS ruled out thy think its fibro and cfs i cannot do anything much alone currently hi falls risk but have incontience accidents due to the slow pace legs lead like! arms get intense pins and neeedles aswell as pain! i am 24 will this go away ive been warned kids may now be a no go also work as i suffer badly sticks indoors wheelchairs outdoors cannot manage stairs sleep downstairs! trying keep chin up just annoyed alot peeps consider it a drama illness a fake illness but the pains like nothing ive felt before sometimes its shoots but burns too! any good news out there? exercise is a no go for me crazy idea right now!

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justlilme profile image
justlilme
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8 Replies
getactive profile image
getactive

Hi the drs thought I may have had MS or fibro but when I saw a neurologist he said that I had functional neurological disorder which no one has ever heard of. It might be worth looking at the web site neurosymptoms.org and see how your symptoms compare with the info on the site. Take care Sue x x x

kizzi profile image
kizzi in reply to getactive

thats exactly what i was diagnosed with.....very frustrating

in reply to getactive

Great site! Lots of good information, thanks for posting it x

justlilme profile image
justlilme in reply to getactive

thank un for your help its really hard to cope isnt it i am only 24 and struggling alot xx

Hi there

So sorry to hear about what you are going through. The good news is that many people with FMS find that they can get the illness under control and have much more quality of life. You have so much going on, and I really think you need professional help to start to manage it better. The first point of call is your GP. You need to find one who understands at least a bit about this condition, and is prepared to listen and take you seriously. They should refer you to a rheumatologist or neurologist and also a pain clinic. These professionals can then help you find the best medication for you - it's not a one size fits all unfortunately, so it may take some time and trial and error. They will also help you with learning how to pace yourself, and other ways to get the worst of the symptoms under control. Sadly, there is no known cure for this horrible illness.

I was diagnosed about 6 years ago, although I think I've had it for about 12 years. I work (currently nearly full time, although it varies). I have a social life - but avoid anything too noisy / crowded / energetic. Some of my family understand and are supportive, but not all of them. I have lost some people I thought were friends, but still have some very good friends, and some new ones!

It has changed my life. Not all for the worse. I think I am more understanding of others, more tolerant of myself, more adaptable than I used to be.

Hope this helps. It's not a bed of roses, but there is light at the end of the tunnel. You will find a lot of information on this site if you browse around.

Kaz

xx

justlilme profile image
justlilme in reply to

thank u sooo much kaz xxxx

kawasakimick profile image
kawasakimick

You are not alone my friend,I to have same things going on ,atos is the worst to convince but it's real no one can say different,im on loads a meds I self medicate as well with herbal cannabis god it helps ,I don't care it's illegal it's a god send,I hope you find a helpful way of helping your pain ect,if you have to have any dole office stuff get a solicitor that deals with welfare an benefits as they are out to screw us all ,its atos that class it as a fake illness they told me on my tribunal that it can be cured ,I wish ,I lost my dla I'm now fighting for my ESA,good luck to you my m8 Mick

Hello and welcome to our lovely forum Justlilme, you are most welcome here!

Take a look around our Questions, Blogs and Tags, there is a wealth of information there, advice, support, personal experiences and friendship too! Please read our FibroAction Guidelines, you will find these under Blogs at the top, please select FibroAction Blogs and then scroll down. We ask all our new members to read these, many thanks.

If you have any worries or concerns, please do not hesitate to ask us, we are always only too happy to help. We all understand, we are all in the same boat here.

I hope you enjoy your time at FibroAction!

I am sorry you are going through a rough time at the moment, you have so much on your plate. You aren't alone here, we all understand and we are all here for you at all times. :) xx

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