Severe leg weakness and walking difficulty-is it normal with CFS?

I don't know if it helps with your wonderings but there are documented cases of ME sufferers who ended up permanently hospitalised unable to move any part of them until eventually dying of heart failure that is apparently more common in ME sufferers

Thanks, Samantha, you made me happier and optimistic...

Hi there,

I haven't had this severe symptoms myself, but I know for a fact that many people suffering from CFS actually use a wheelchair, and they don't necessarily have any other illness. After exercise though, I can sense an odd weakness in my legs which has made me wonder how long it will take to not be able to walk any longer.

This very good article on CFS talks about the percentage of people disabled, though I believe the figure is too high considering that many of us go undiagnosed:

http://www.um.es/lafem/Actividades/CursoBiologia/Consultas/Actual-chronicfatigue.pdf

Thanks, Avocado, for the informative link. It will be even more interesting, if there is any source of info about patients, that were diagnosed with CFS, became severely disabled and finally came out with another disease, that can explain better their disabilities...

You need vitamin B12 supplement

I take B12 + ComplexB and it does'nt help...

HI David, I have had CFS and fibromyalgia for past 4 years (finally diagnosed last August). My first symptoms were in my legs and over a few months became worse. I had cramping, weakness, tightness, lots of neuro sensations and deep aching pains.....sometimes my legs just hurt without doing anything! It was so painful and restricting my mobility they thought I had compartment syndrome of my leg muscles at first. Exercise i.e. just walking for a short distance can make symptoms worse and if I'm in a bad phase I use a wheelchair. I live in the channel islands so thankfully nothing is too far away on the island, but when in England I hire a wheelchair as even standing for a few minutes and I have difficulty balancing and the energy is just sucked out of my legs. I have loads of other symptoms which I wont bore you with, but essential I have to plan ahead a lot and take each day as it comes. I'm doing graded exercise therapy which I think is helping but its early days yet. Lots of hot baths and resting between chores that are broken up throughout the day. Magnesium supplements, Vit.D and calcium are also helping. I hope that helps? k

Thanks for your detailed reply. I'm sorry to read that we are on the same boat... Are you using an electric wheelchair, or able to use your hands with a regular one? And if yes - how far can you reach, until your hand's muscles are becoming exhausted?

Thankfully, I have only needed a wheelchair a handful of times over the past 4 years and have used a push yourself one. Its only more recently that my arms are affected so much I'd prob not get that far on my own now! I drive a lot ( not more than about 30-45mins a time) and am lucky that most of the shops I go in have parking right outside. Presently I walk carefully for a few minutes and then have to rest. Its the unpredictability that I find hard. How are you at the moment?? k

I have had cfs for about 8 years but was only recently diagnosed with it last year, i will say walking is a pain in the ass and i am using a stick sometimes 2 depending on my day, I have tried to build my stamina up for my legs so that i can walk better and move more easily but it is difficult and i feel like i am sometimes wasting my time because i feel exhausted and can barely move afterwards, i would love to just get back to what i used to do before this.

yes ok i know i sound like i am whining but my therapist isn't helping at all and i feel extremely useless,exhausted and fed up, has anyone got any advice

Hi, I've had chronic fatigue syndrome and myasthenia gravies for about 7 years now,it started with a virus, Headache,dizziness almost like I was drunk,co-ordination problems then about 4 months later muscle Weakness,fatigue ,nausea.

After many test's and trips to my doctor he did a blood test for myasthenia gravies because of the weakness my leg's and arm's.This came back weakly positive and also confirmed M.E. I've had many years of sleeping all day and all night and so on, times when I cannot walk or if I do I am in severe Pain and very weak, the

more I do the worse I am, I gave up work as I physically couldn't do it.

Not ready to give up life yet I've tried acupuncture from a Chinese therapist, I did go with an open mind but I did not expect the results I got...I can honestly say I never thought I would ever feel well again!

Don't get me wrong I'm not 100% fixed but I would say about 80% I don't sleep half as much...I actually feel like I've got energy and I'm not in half as much pain.

I would urge anybody to try it, for me it's helped me get my life back.

Hi lisa, I'm so happy for you with your improvement. Did the treatment imoroved also your walking ability? Do you feel your muscles are stronger? And few more questions: You've mentioned you are about 7 years in this condition. When did you start with the acupuncture? How often you get your treatments? Did you make any other changes, during the treatment's period, such as changing your diet etc.?

I appologize for the "investigation", but your story inspired me and I'm very curious for all the details...

Thanks and keep improving!

.... One more question, if I may... Did you get any conventional treatment for the Myasthenia Gravis and if yes - for how long and did it help? (Well, it was 3 questions...)

Hi David,

I will try to answer your questions as best I can;

As for walking the answer is yes, I have definitely improved with walking, you may know what I mean by this ..I kind of walk different now since being taken ill, like taking smaller steps and not able to walk fast or even at a normal pace, the more I walk the worse I am, some weeks I can't walk the pain and weakness is too much...standing even for a few minutes is a killer, I find now I can walk for longer with hardly any pain.

Yes my muscles don't feel as weak in my legs but still not too good in my arms. I started acupuncture the at the beginning of October 2013 - I had a in depth consultation with the therapist who asked various questions about my illness, life style, daily routine, family, what type, where, when the pain is, level of pain etc etc and then a treatment (30 minutes) of acupuncture...I didn't really feel any different..I went back 2 weeks later for another session...I woke up the next day feeling like I had a good nights sleep and felt awake for the first time in years!!

It was after the second session of acupuncture that I started to see a massive improvement (within days). I was a lot stronger, more energy, it felt like I was alive again

I didn't change anything else like my diet also I don't take any medication as I seem to be hypo - Sensitive and makes me feel ill.

I did try mestinon and azathioprene??? not sure of the spelling they didn't help.

All I can say is please please please look into it and find a reputable therapist, in my opinion I found the Chinese therapists are far more experienced and knowledgeable than some westerners. I used a gentleman called Victor Ong he charges £45 per hour session and is currently treating three or four people at the moment who suffer with CFS.

I've had chronic fatigue syndrome and myasthenia gravies for about 7 years now, it started with a virus, Headache, dizziness - almost like I was drunk, co-ordination problems then about 4 months later muscle Weakness, fatigue and nausea.

After many test's and visits to my doctor he did a blood test for myasthenia gravies because of the weakness my leg's and arm's, this came back weakly positive and also confirmed M.E. I've had many years of sleeping all day and all night and so on, times when I cannot walk or if I do I am in severe Pain and very weak, the more I do the worse I am, I gave up work as I physically couldn't do it.

Not ready to give up life yet I've tried acupuncture from a Chinese therapist, I did go with an open mind but I did not expect the results I got...I can honestly say I never thought I would ever feel well again!

Don't get me wrong I'm not 100% fixed but I would say about 80% I don't sleep half as much...I actually feel like I've got energy and I'm not in half as much pain.

I would urge anybody to try it, for me it's helped me get my life back. I will go for top up sessions about every 2/3 months. It has changed my life...please don't give up hope...believe in getting better ...I only wish I'd have tried it years ago...any more questions please ask, if I can help I will....I hope this helps you x

I see your posting is a few months old but I wanted to bring something up if you are continuing to have problems.. I have a disorder that is considered rare.. but it is actually rarely diagnosed.. It is called andersen tawil syndrome and is a potassium metabolic disorder.. everyone that has this disorder usually goes through numerous diagnoisis before coming to this answer through an exceptionally talented doctor or their own research.. for years diagnosed as somatoform and chronic fatigue and or fibromyalgia but through my own research came up with this diagnosis.. by changeing my diet to low carb low sodium high protein with natural fats I am much Improved.. however permanent muscle weakness can be a result.. there is an expert in London who is familiar with these disorders.. some other signs that may indicate one of these disorders is sleepyness and weakness after high carb or high sodium meals. Exercise intolerance Lidocaine resistance or problems with anesthesia and other paradoxical reactions to medications from steroids to antibiotics and so much more.. for more information contact the Periodic Paralysis Network or Andersen Tawil Syndrome page both on facebook.. Periodic Paralysis Network is also on the web if you don't have facebook.. Dr Michael Hanna is the london expert a world renoun researcher on these disorders.. by google you can find much information on Periodic Paralysis and other Ion Channelopathies..