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

Brain and nerves
1

Hi,

I was diagnosed with CFS 10 years ago and from the very first moment suffered from walking difficulty. In the last 3-4 years I almost can't walk, using a cane at home and an electric wheelchair outdoors. Only now, after so many years, I started wondering if those symptoms are related to my CFS... Does any of you having such a severe walking disabbility? Do you have any suggestions what to do? how to treat?

Thanks an a happy new year,

David

2

Hi,

I had the same issues and ended up in a wheelchair for a time and on sticks as well. Basically I got myself out of the wheelchair by stopping pushing myself so hard. I kept trying to keep going, determined not to lose every bit of independence that I had but instead I lot every last shred of independence as I was dependant on someone to push me around. I put it down to my body forcing me to slow down. I also have some painful and weak joints and swelling in my spine that was all thought to be linked. I managed to get out of the wheelchair but didn't manage to improve much more of my condition and still couldn't do excessive amounts of anything until recently. I've done some research and found a natural supplement plus an eating plan that has basically helped renew my system and now I seem to have lots of energy and my swelling, joint pain and muscle weakness has ceased. I was taking prescription strength co-codamol every day but recently I've been able to stop taking it. Is this the kind of thing that you're interested in? Is it just the muscle weakness that you struggle with or are the other ME symptoms big stumbling blocks for you too?

Samantha

3

Thanks for your response.

What most bothers me is the muscle weakness with any physical activity, even the easiest... I'm starting to worry that I might have a different disease, other than CFS ... That does not seem to me normal, that a symptom of walking problems, for so many years and only getting worse all the time, is a known symptom of CFS ...

4

When I went to the hospital for all of my tests they tested me fgro MS and stated that ME can often mimic the symptoms of MS with the only difference being that there's no scarring to the brain and that's howe they know you don't actually have MS. MS truns through my family and I had more symptoms of MS than any of my family and symptoms they'd never come across and the specialists said this was normal. A symptom of MS is muscle weakening and walking difficulties so it is pheasible to me that it is a symptom but if you're unsure find yourself a good GP and they'll refer you for further tests. My GP never just says "it's the ME" and leaves it there, he always gets me sent for further tests to rule everything out. Hope this helps.

5

Hi, I'm going though a lot of tests at mo, due to having same kind of symptoms but I do regain the strength back in my legs, then 7/8 days later I'm unable to walk as they are so weak, this lasts for 5 days ish and it's a circle at mo. Doctors think it may be ms but tests are all coming back clear so I'm expecting the diagnosis of me very soon. I'm having trouble finding people who loose the use of there legs like I do, my husband has been great and there are hard times, but I plod on for my children. I've even had to give up my full time job cos my legs are so unpredictable. Hope this helps sending hugs to you xx

6

I'm so sorry to read you both share the same scaring symptoms... Have you ever thought of Myasthenia Gravis, a syndrome that might explain ALL the symptoms together?

7

May I add one more comment: In the CFS's diagnostic protocol of the Canadian Clinical Case Definition (2003), it is mentioned, among the other common symptoms of CFS, that "Ataxia, muscle weakness and fasciculations are common."... I'm asking: how many patients with CFS are really experiencing a muscle weakness and how severe it is... And how many are unable to walk more than few steps and need an assistance, like wheelchair? Or, in other words, what is the precentage, among the sufferers, who became real handicap...

8

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

9

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

10

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

11

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...

12

You need vitamin B12 supplement

13

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

14

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 cheesygrin

15

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?

16

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?? cheesygrin k

17

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

18

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.

19

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!

20

.... One more question, if I may... confused 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...)