So I'm a 20 y/o who suffers with fibro and Hypermobility. I work 30 hours a week at Lidl. I came home Wednesday night from work (around 11.30pm) as soon as I sat down on my bed, I lost all feeling in my legs. I had my other half poking parts of my legs (this would normally result in me screaming out in pain and nearly passing out through pain) in which I could not feel. Not one bit. Not even a tickle. I even had him tickle my feet and nothing. Last time he tickled me, I accidentally kicked him im the face I'm that ticklish. So I'm sat on my bed thinking, well, shit. I've lost my legs *cue the hysteria.* I've heard and even seen fibromyalgia/m.e paitents in wheelchairs or on crutches, but always thought "there must be something else wrong." I've only been diagnosed since April, but have had symptons since 2009. I go to all the fibro classes and coffee chats, plan my days, admittedly I don't have a routine as I work shifts (i plan on handing in my notice next week) but I do everything I can to learn and action the advice. But I'm getting worse. A lot worse. I have a friend coming round to drop of some crutches for me. This is my 2nd day of being bed bound. I'm meant to be at work. What nobody told me was that there are many outcomes to fibro. Nobody told me that losing all feeling in your legs might happen. A heads up would have been nice. Specialist are great, they've really helped. But they need to know more, they need to tell you more. I don't know how long its going to take for my legs to come back to life, it might be a few days/weeks/months. Was I prepared? No. Did I stay up the majority of Wednesday night researching the hell out of "side effects of Fibromyalgia?" You bet ya! Should I have already known the majority of these side effects? Yes. This illness we live with is utter crap. We don't get special treatment. We get called lazy and dramatic. Fibromyalgia needs to be shoved in societys face. We need people to know about it and be aware of it just as much as they know about cancer, diabetes and flu. Because who knows, one of those people might have told me I was going to lose my legs. One of those people might be a colleague who understands when I say "I cant do that", they know I'm not just trying to get out of doing a job and therefore don't go behind my back and spread rumours. I don't want to be glared at by a pregnant woman on the train because I won't give up my seat as standing for more than 2 minutes nearly cripples me. I'm fed up of explaining myself. I'm at my lowest. Depression/Anxiety have taken a hold of me this week. But does anybody care?
Dead legs.: So I'm a 20 y/o who suffers... - Fibromyalgia Acti...
Dead legs.
Hi there, I am so so sorry this has happened to you, I think you should get in touch with your GP immediately as complete loss of feeling in your legs could possibly be related to something else. If you can't contact your GP a visit to A&E would be good, such symptoms as you have need serious investigation.
Sending lots of healing vibes your way 
Foggy x
Thank you for your healing vibes. My work have demanded a sick note so have booked a emergency appointment for later today with GP. I contacted my rheumatology specialist yesterday. They said its quite common but to be very aware of how it feels and to contact a gp if it doesn't improve in 3 days. Just lots of rest for me.
Thank you again,
Sian xx
siankathryn AMEN!!!!! I couldn't have said it better, Dead leg is possible one the only things I haven't had. I've had fibro for 18yrs and you just knocked it out of the park this is a hellish nightmare syndrome which which claws and tears at your mine and body. I wish I could make it better for you but I can't. But I offer you much the support. xxxx
Thank you for your support. I hope that one day light will be shed on this awful illness/syndrome/disease so that FINALLY people will go "ahhhh.... I get it now!" Sending you gentle hugs and warm vibes for your day. xxxxxx
I'd be straight down the local A&E kicking up hell if I lost the feeling in my legs, fibro or no! Can you walk at all?
Hope you get some answers soon. x
On the Wednesday night, my right leg started to come back to life, so thought to myself "oh it must be because i've just done too much, i'll rest" A&E wasn't really a thought. Yesterday I couldn't get out of bed without falling over. I used my computer chair to get around, yay for wheels. Today I am able to hobble. Only because my right leg is coming back to life. I'm having to push my left leg when I walk. I think if it continues tomorrow, a hospital visit will be in order. xxxxxx
Please go todayXX
Hi so sorry, I wouldn't mess around with this symptom get yourself back in bed and get thr GP out to you as an emergency call out! Let is know how it goes, hugs kim x
They weren't able to get my GP (I don't like any of the others!) out to me today, but they have offered their taxi service for free, the man is bringing a wheelchair. I'd rather see him today then wait another day. Thank you. I'll keep everyone updated xxxxx
WE DO this happen to many of us, in my case I was found to be vitamin D deficient from reading posts on this forum it seems it is one more thing to contend with. Lack of vitamin D has left me with nerve damage so would suggest you get that checked I am no medical expert just a fellow fibromite, So dreadful to be dealing with all this ay such a young age, I am MUCH older, get all new symptoms checked out.XX
I'm on vitamin D supplements as my count was SUPER low on my last blood test. I have more blood tests booked for 2 weeks time. Hopefully they'll be better. Taking 9 tablets a day at the moment. It's a lot to think about. Thank you for your help 
xxxx
Other people may not care but you can be assured that everyone here who has read your post is nodding their heads and sympathising with your every word. Have just read your post and feel so sorry for you this episode must have been really frightening. Please let us know how you get on at the doctors. Big hugsx
Thank you so much. It is more than wonderful to know I am not alone. I have put a big response about my time at the doctors. Hoping this will all be over soon. It has been very scary for me as well as my partner. I am determined to get better. Gentle hugs to you xx
Hello everyone. Firstly thank you all so much for your well wishes and support. I've only been a member for 2 days and already feel part of the family! Doctors went well. He gave me a sick note straight away for my work. Which was what I went for in the first place. As he is a GP and not a Fibro specialist, (My closest specialist is a 25 minute train journey away) he couldn't shed too much insight into my "dead legs" but he assured me this was quite common with fibro patients and that I wasn't the first he has seen in this year. He was concerned about the length in which I haven't had any feeling in my legs so did some refelxy stuff just to make sure and that was all fine, so my legs aren't completely useless - hoorah! I've had pins and needles in my foot for the last hour, which I assume can only mean good. My wonderful friend has lent me her crutches for however long I need them, they have made it easier to walk to the loo. So also a plus! However if it does continue onto tomorrow my partner has now demanded we go to A&E. And I agree with him. After seeing and speaking to my doctor I'm not too concerned. But obviously understand that 3 days of not being able to feel your leg isn't ok and something needs to be done. I will continue to keep you all posted. Again thank you to everyone, being 20 years old and not having anyone close who understands is really difficult, but now that I have entered the health social network and shared a snippet of my life with you all and not be judged has put a smile on a face that hasn't smiled in a long time. Gentle hugs, healing vibes and love to you all xxxxxxxx
Hi glad you feeling a little reassured after your frightening experience. No one will judge you on hete we all understand, agree with your partner if ml feeling back ny tomorrow seek further advice.I had no idea fibro could cause this to happen.good luck x
Tks for letting us know how you got on and hope you can now have a good rest and keep on progressing. I agree with you that if things get any worse you do need to go to A & E. Keep us informed of your progressx
Hi siankathryn
I am so sorry to read that you are suffering and struggling in this way and I am with the others on here, that you really need to have this checked out asap, even if it is for no other reason than to get other things ruled out! I want to wish you all the best and I genuinely hope that you are feeling more like your usual self again soon.
All my hopes and dreams for you
Ken x
Sweetheart I'm so very sorry!!! I had know idea it could happen either. Geez I pray you at least get the feeling in your legs back. Who knew??? I always thought the pain was horrible but now I'm wondering what I'd do if I couldn't get around. I live alone and I feel sick for you. Please keep us updated about how you are doing. Sweetheart I care!!! Hang in there honey, hopefully the doctors can help you get back on your feet soon!!! xxx Mitzi
Hi,
Sorry to hear about your recent misery.
I had a major episode about three years ago when my limbs went from being ok to suddenly being totally useless... I literally could not do anything but lay on the bed. Even holding the phone was virtually impossible. My gp was called who admitted me to hospital. My limbs started to come around about 16 hours afterwards, but very slowly over a period of weeks. On top of this I felt very unwell.
I was kept in Neurology Ward for four days but to cut a long story short it appeared they were only really interested in illiminating MS. They completely left me to it after discharging me, still with weakness and very unwell.
Since then always had weakness, pain and poor mobility, amongst other things.
Has huge amount of testing since. ..seems on going.
Diagnosed with CFS/Me, FM, pituitary adenoma, diminished thyroid gland grrrrrr!
I would suggest that at very least you request a head MRI, spine scan, and full set of bloods taken, including cortisol levels. Hun, make the Dr's take your legs seriously.
Good luck & wishing you well.
Xx
Hi everyone. Yesterday was a up and down day. But I got out the house with help of crutches. I had feeling back in my leg so decided to just walk up to our local pub to have some lunch. Yesterday consisted of a lot of pins and needles and sleep. Woke up this morning and apart from a dull ache in my leg, a feeling I get quite a lot after cramp, everything is back to normal. Walking around the house absolutely fine. I won't be giving the crutches back to my friend just yet though. Thank you to those who have commented with advice and well wishes since I last commented. I have a feeling this episode will lead to quite a nasty flare. But we shall see. I have hydrotherapy on Tuesday which always puts my legs in agony, so will have to see what happens. Love and gentle hugs to you all xxxxxxx
I had same problem some years ago, about 1998/2000- went camping with family..me hubby an son, my son was about 11, he kicked football to me, I went to kick it back and ended up eating grass.. Didn't taste good for sure.! couldn't work out why legs wouldn't work- Blood box called, blue light to A&E- quack hummed an mmmnnned, then said "must be something to do with yr FB.. so stuffed a little needle with morphine into both legs.. ten minutes later stumbled out back to camp site- laid up for 10 days while "they" had all the bloody fun.. ain't life great.? thankfully I got better after about two weeks and not been too bad since- occasional fall, excuse is ... I must have slipped on something.. and that's the life we lead.. not good news, but not bad news either.. chin up- smile- joke about it- wear very thick skin and don't grumble. being a sulk head makes people walk away and bored just as quickly.. and then empowers you to be more sulky- and feel very sorry for yourself-
Does any one feel fluid retention ??my legs swollen compared to the other xx
Dancing legs
Rheumatologist consultation tomorrow
A great site...
Aspergers and Fibromyalgia
