Fibromyalgia Action UK
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Is anyone else losing sensation in their arms or legs?

Hi, but am now losing I've not written anything before, but do read items on the site. I'm into my 20 odd years of FM & CFS, but am now losing feeling and reflexes in my legs, specially the left. Does anyone else have this? I keep falling over and yesterday, after feeling great hving restarted Pilates, collided into a plastic crate in the hall and only realised my foot was in it when I fell into a cupboard, bashing my bad leg and knackering my right wrist trying to break my fall - bugger!!!!! Now, I've lost a day sleeping on the sofa and today feel like I've been through 6 rounds in a wrestling match - I'm a massage therapist as well and sod's law says of course, I had to cancel 3 clients due to feeling a fool again - it is true that FM waits around the corner and pounces just when you're on a roll - are we that wicked that we're being made to pay now???!! Please let me know if anyone has the numb feeling with the ice cube cold dripping down the leg - how do I manage to avoid bashing into things all the time?

9 Replies

Hi Tess, Gentle hugs.

I posted this earlier in the week on my blog. Am a newbie to the site. I hope this "letter" below answers any questions, as I find it invaluable to check against before seeing/wasting my time at the Quacktors!

Carol x

A Letter That Fibromyalgia Wrote To Sufferers.



My name is Fibromyalgia, And I'm an invisible Chronic Illness. I am now velcroed to you for life. Others around you can not see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or if I'm in a good mood, I can just cause you to ache all over. Remember when you and Energy ran around together and had fun. I took Energy from you, and gave you Exhaustion. try to have fun now! I also took Good Sleep from you and , in it's place I gave you Brain Fog, I can make you feel anxious or depressed, too. If you have something planned , or are looking forward to a great day, I can take that away, too. YOU didn't ask for me. I CHOSE you for various reasons: That virus you had that you never recovered from, or that car accident , or maybe it was the years of abuse and trauma. WELL, anyway, I'm here to stay!

I hear you're going to see a doctor who can get rid of me. I'm rolling on the floor, laughing, JUST TRY!. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL , not taken seriously as you feel when you cry to the doctor how debilitating life really is. Your family , friends, and co-workers will all listen to you until they get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like, " Oh, you are just having a bad day" or " Well remember, you can't do the things you did 20 years ago", not hearing that you said 20 days ago. Some will just start talking behind your back, while you slowly feel that you're losing your dignity trying to make them understand, especially when In the middle of a conversation with "Normal" person, and can't remember what you were going to say next!

In Closing, ( I was hoping to keep this part a secret), but I guess you already found out...the ONLY place you will get support and understanding in dealing with me is with Other People With Fibromyalgia...

Yours sincerely,



P.S. Tess, I too have the same sensations you do with the feeling if ice cubes etc., loss of control of hands arms and legs.

C x


Please see your GP about this. I would not expect Fibro to cause that kind of numbness.


hi, yes I have lose of feelings but I have a number of other conditions so it may be worth having anther chat with you doctor even if its just to rule out anything else xx


I do i get a feeling that my arms and legs are asleep without me ... But a trip to the gp might put your mind at rest ...gentle dyslexic hugs xx


Thanks for the responses - I have had it checked out by the neuro bods and confirmed that reflex and feelings are degenerating - more in left than right, but it seems to be increasing on left these last few weeks. GP on the ball - like a comment I read - you have to have a good GP with FM - I took 5 years to find that out, now it's like waking up to find someone is on your side! Brill from yesterday tho - gave blood, then had wrist checked after the fall - now home from A&E in splint with a suspected fracture - have to go back to see consultant - oh joy - bang goes my massage appointments again - have to rearrange my clients once more - they have the patience of saints with me! Does anyone fancy some home stitching ? Only joking - I'll have to try to do it left handed ........

Have a good weekend all - I'm going to make sure my husband does everything now - no dishes, housework, shopping (I know I shouldn't be doing half of what I do, but they do forget and let you get on with it don't they?) - after all, I have been told by the hospital!!

Much love and hugs with some aromatherapy thrown in - anyone near Portsmouth - I'm always willing to a special deal for fellow fibromites!!


HI Tess 59, I get loss of feeling in my legs, first it was my right, from the knee down and then both legs. I loose balance for no apparent reason. Both my big toes are constantly numb. I also loose feeling in my right arm from the elbow and my hands are constantly tingling. I have back problems though, slipped discs and damage to my left knee resulting from a riding accident...... maybe you should see ur GP. Good luck, BW


I do... 2 years ago i lost my balance in my garden. one min i was just standing the next i was on the floor.. this led to me have a dvt in my left leg, then i collapsed and was rushed to hospital a few days later.. turned out i had a pulmonary emnolism which was very large in my main artery of my lungs... i survived... but like u.. i stumble alot.. feet feels like they are broken and i have to walk on them.. hands fingers sometimes i cant open them... but to look at me i look fine...that is what annoys me.. see when i was seroulsly ill, the people who was so concerned about me. lots of flowers cards ect.. but get no one caring about my everyday struggle with fibro/ME ect... and i can assure u... firbo is 100 times worse.. xx


Hi yes i do get that at times i have seen my GP about it in the past and she is always asking me about numbness or pins ans needles in any part of my body i have been checked out and I have nothing untoward wrong and she is keeping a close eye on me but i would def go see your GP and explain it all to them as everyone is so different

sorry about your fall i have done that twice when getting out of bed lol put leg out and next thing i know i am on the floor i didnt hurt myself and i laughed i had too or i would have cried !!!!!

you get yourself checked out lots of love diddle x


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