1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
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  1. snowathlete

    snowathlete

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    My legs have been getting weaker for a while. Though its only recently that i would describe my legs as weak. Previously, my legs were not strong, but sufficient i suppose.

    The last month or so i've noticed that they are much weaker and today especially i have noticed how weak they are. My legs feel like they are all bone and no muscle. Walking is harder, i cant lift my legs up, so they almost skid along at times, and i feel them shaking pretty much all the time, very small, but constant shuddering.

    Im finding it quite destressing because ive had this illness four years now, and if things continue as they are then i cant see myself being able to walk/stand at all in another four years time. Perhaps much sooner than that.

    Is there any knowledge as to why this is happening, and anything i can do about it? Im reluctant to go to my GP who im pretty sure wont be able to do anything about it.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Snow,

    I am wondering if this could be related to OI or is something different? Sometimes with OI it feels like your legs are very heavy and just don't work very well. Any thoughts?

    Sushi
    taniaaust1 likes this.
  3. cassuk11

    cassuk11

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    My legs are similiar. I sometimes i have to use my hands to move my legs. They feel like they weigh a ton and rock hard
  4. snowathlete

    snowathlete

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    I dont know, could be. Havent read much abotu OI, but I do get very dizzy when i stand up. I dont know that my legs feel heavy, more that my muscles arent up to the job of, well, being muscles really.
  5. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Hi, you'd want to distinguish between wasting away of the muscle size (atrophy) or having the same size but less strength. Saying "all bone and no muscle" sounds like atrophy, but that's not quite clear.

    If it is atrophy, point number one concerns getting enough protein. Then there's exercise, of course :)

    If those basics are not a problem?
  6. snowathlete

    snowathlete

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    Yeah, it feels like all bone and no muscle, but thats not really the case. My legs still have muscle and flesh on them. Id say not as much as they used to be, perhaps 20-30% less mass, but then i havent done much exercise the last four years.
    My diet is good, lots of protein.

    I stopped taking supplements as i cant afford them anymore and because i didnt feel they were helping, but i think im just about ok on minerals and stuff. Havent had a blood test for a while, so maybe worth going back to rerun some i suppose. do the usual rulling out of obvious problems that my GP can actually do something about.
  7. Helen

    Helen Senior Member

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    Hi Snowathlete,

    One year ago I had very weak muscles and had difficulties to walk. A neurological examination didn´t show anything. I hadn´t started Rich´s methylation protocol, but asked him for an advice. He thought I had problems in Kreb´s cycle connected to a partial blocked methylation.
    He recommended me to start with L-Carnitine fumarate, Q 10 and adenosylcobalamin (dibencozide). I did, and after some weeks I could feel that my muscles reacted more normally, but were of course still weak after a long time of inactivity.
    Later I started with D-ribose, also said to be helpful here. Together with Rich´s protocol for a year by now, I can´t say my muscles is a problem any longer.
    Hope this can be of some help for you.
    camas likes this.
  8. k-AUS

    k-AUS

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    Hi Snowathlete,

    Heavy, weak legs (particularly the quads) are one of my main symptoms and I have found that the severity correlates with the degree of OI I am experiencing. My legs are naturally strong but have little endurance. The only thing I have found that helps is making sure I don't 'overdo' it in the first place.

    Also, I did notice that when I started vitamin B12 shots this helped initially, but now the effects seemed to have worn off. I am about to increase the dosage so I will repost if I notice improvement again.:thumbsup:
  9. taniaaust1

    taniaaust1 Senior Member

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    Im with what the others said.. it may be OI issues as they can make the legs feel weak and heavy (and make them start shaking). If you could have a tilt table test to see if it can be worked out what kind of OI issues you may have and then treat any found, it may be helpful.

    In my case thou I also had this issue I think separately to the OI when I was just weaker just due to the ME itself and had relapsed down to a lower baseline for quite a while (I was very weak all over). Just as it is likely you may get worst and weaker, it is just as likely in the future even if you did do that.. that you would get better again and be back to where you are today or maybe better. One thing which always usually holds true for ME is that it isnt a stable illness, it can be very up and down so on over the years and you will probably notice that and also possible whole shifts in the symptom complex you have today. So try not to think of it as an illness where you are going to get worst and worst.
  10. taniaaust1

    taniaaust1 Senior Member

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    I noticed the other day that I still often use my hands to aid myself when going up steps.. I tend to either push down hard with hands on the upper leg thigh (while leaning forward) to help bring the following up leg ..so using my legs like a prop and getting my hands to do the work with stairs.. or if there is a rail.. im often using it some to help me get up the steps. Ive lived with this illness so long now that I do such things without even thinking and dont even notice im weak as its my normal state (so without awareness when Im using my hands to help me).

    Realising I was going up steps like that I found interesting as its exactly how my disabled child does stairs. In her case thou she does stairs like that due having birth defects (you cant see her lower leg muscle is there at all.. all one can horribly see is her lower leg bone.. she was supposed to never walk due to her muscle issues, she couldnt stand due to her muscles till she was at least 2 and a half years old) . My muscles thou to look at look fine but still are causing me to do adaptive things to function...

    with stair descents.. I often automatically tend to use rails to slow me down (so I guess that must be showing my legs are weaker then they should be too).
  11. snowathlete

    snowathlete

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    thanks for your replies everyone.
  12. Valentijn

    Valentijn Activity Level: 3

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    My legs start malfunctioning after walking "too long" (sometimes as soon as I start walking). I don't know if it's from PEM or OI, but I walk better when my OI is doing better.
  13. RYO

    RYO

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    I have similar symptoms of hip girdle and leg weakness. My symptoms started in May, 2012 after severe viral illness which included severe lower extremity myalgias. I was diagnosed with coxsackievirus B subtype 4 by Dr. Chia. It is known that coxsackie virus is myotropic. My theory is that patients with localized muscle symptoms may have viral persistence in the muscle. Interferon b may be potential treatment but data is based upon treating patients who were diagnosed with viral cardiomyopathy.

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