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Muscle Weakness

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by Moxie, May 28, 2013.

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Do You Experience Significant Muscle Weakness?

  1. Yes, weakness is one of my top 3 complaints

    33 vote(s)
    67.3%
  2. I experience significant weakness, but in the scheme of things it's a minor complaint for me

    10 vote(s)
    20.4%
  3. I experience weakness only occasionally or very mildly

    6 vote(s)
    12.2%
  4. Weakness is not part of my clinical picture

    0 vote(s)
    0.0%
  1. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Heat shock proteins... as usual all roads end up getting very tangled. The heat shock proteins come into play as part of the body's defensive reaction, their role is to protect proteins from being unfolded and otherwise damaged by the threats of heat and oxidation, etc. Apparently, you can think of them as providing a protective covering to the proteins. As to why that would protect them fro heat for more than a millisecond, I don't know.

    So, if NSAIDS reduce the amount of HSPs being produced, the tight junctions in the gut don't get protected so well from heat or oxidation or whatever.
  2. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Funy you metion SOD, because many yars before CFS I'd bought a bottle (on the basis of some raving testimonial). But for what end, I don't remember; though it must have had to do with some pre-CFS condition, maybe energy.

    I don't know, maybe superoxide is a contributor to PEM or to daily weakness? Two days ago I decided to load up on antioxidants before my next ride, to see what happens.
  3. lansbergen

    lansbergen Senior Member

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    The immunemodulator I use is among other things a superoxide scavenger. If I forget to take it I will notice the next day.
  4. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Speaking of manganese (a la SOD2), did you happen to have tendon problems before getting sick? I actually bought manganese 2 months ago because of joints, though you seem to be looking at the mitochondria angle.
  5. lansbergen

    lansbergen Senior Member

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    I had no tendon problems or mucle or nerve problems. I was perfectly healthy.

    When somebody on another forum posted a paper about SOD2 depletion the ligth went on. The paper was about the infection I always suspected.
    Sherlock likes this.
  6. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Congratulations on having found some supplement that has a good effect. :thumbsup: What infection? I just looked at your profile but don't see it talked about in a blog or treatment detail.

    (I just took my BP and it is back to normal since starting ginger - hooray! but finding a supp that works on something is fairly rare in my experience, both pre and peri-CFS.)
  7. Carola

    Carola

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    Moxie, I'm grateful to you for starting this thread and to all who have posted. I have also felt very alone with this symptom! I'll add my experiences.

    Muscle weakness and lack of stamina were my first symptoms of CFS. Over the course of 4 weeks in 2010, I went from noticing my arm getting tired when erasing the blackboard in my classroom to being barely able to pick up my laptop, and from easily climbing 5 flights of stairs in my classroom building to barely being able to manage one flight. Symptoms of PEM and fatigue set in at 5 weeks. Nerve conduction and pulmonary function tests were normal.

    Over the next 6 months, I regained some stamina and was eventually able to walk 3/4 mile with no ill effects (formerly, I'd walked 2-3 miles daily). Then a bad virus knocked me way back, leaving me able to walk only 3-4 blocks before there was no muscle power left. I now use a wheel chair for any distances longer than that. I have little arm strength: a glass of water is heavy, brushing my teeth makes my arm feel ready to fall off. For the phone - must use a headset.

    I try to be very careful not to overdo, but sometimes it's hard for me to know what is too much. Overall, I feel as though my baseline is regressing.
    Valentijn likes this.
  8. Lou

    Lou Senior Member

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    For a few with muscle weakness it may be a copper deficiency.

    Yes, low copper is rare and too much cu quite toxic, but we have a few things going that could explain us being among this rare grouping. Many of us have taken large doses of vit c for years, and excess vit c depletes copper. Many of us take zn supplements which almost everyone knows depletes copper as well. Cu deficiency can manifest with b12 deficiency which is common in ME. And our gut problems probably make cu absorption less efficient.

    Though you could get tested, not sure how reliably, there's a simpler way along with a simple fix. You may wish to buy a small bottle of chelated copper and first thing in the morning before breakfast bite off approximately half of it, chew and let remain in mouth to fully dissolve/absorb. If it tastes 'not bad' or even 'sweet', it's almost a sure sign you need copper. If it taste really bad, highly metallic, you probably need no additional copper.

    When I was diagnosed years ago with low copper my doctor told me to get bottle and take one chelated cu supplement every morning before breakfast for about a month. He warned me NOT to exceed one month of taking it.

    So, if this rare deficiency happens to be your problem the good news is that relief is only a few dollars and a bottle of copper away. Please be careful, however, cu toxicity is a serious matter.
  9. Prosons

    Prosons

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    Hello,
    This is a very useful thread! I have two relevant questions:

    1. I find that in the morning upon first waking is when I feel my strongest. Within one hour irregardless of what I do
    physically all of my strength, body wide is depleted. Is this typical?

    2. Recently I tried to cut back on my caloric intake because I discovered that I am very sensitive to Omeprazole. My thought is to loose weight and reduce my dependency on PPI's. The problem I'm having is, reducing my caloric intake leaves me feeling much worse in terms of overall strength, stamina and general wellbeing. It seems as long as I'm stuffing myself with calories all of the time, I function better. Is this typical?

    Thank you for your replies!
    Frank
  10. Prosons

    Prosons

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    I too experience muscles "giving out" without warning.
    In my case I believe this is caused by myoclonic jerks, contractions and relaxations.

    Myoclonus
  11. Valentijn

    Valentijn Activity Level: 3

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    My minerals were accidentally tested last year (don't ask :p). My serum levels were high across the board, including copper, but my intracellular copper was too low to be detected.

    Needless to say I avoid supplementing zinc, but find it interesting that overall levels are okay, and the problem would seem to be with transporting the copper to the cells.
    SickOfSickness likes this.
  12. SickOfSickness

    SickOfSickness Senior Member

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    Would you feel okay the next hour if you rested for the first hour?
    Prosons likes this.
  13. Lou

    Lou Senior Member

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    Only anecdotal, but my experience is getting copper to the cells is thwarted by mal-absorption in the gut. I think there's an enzyme (forget the name at the moment) needed for proper absorption and perhaps it is missing in some with ME/CFS.

    Wish I had a better way of getting useful copper (who wants to dissolve a metal in their mouth?), but right now I know of no better option. Copper seems to be my missing link/remedy for muscle weakness.

    One further note, I sometimes take manganese along with the copper.


    edit: what I called an enzyme above is actually the protein Ctr 1, necessary for proper uptake of copper. Some of us have a polymorphism of the gene responsible for this protein.
  14. PennyIA

    PennyIA Senior Member

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    What gene is this? I have enough deficiencies I'm still trying to address (some successfully, some not)... I have no idea if copper is an issue or not. If I knew the gene, I could check my 23andme results and see if I need to look into this further.
  15. Lou

    Lou Senior Member

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    Don't get me to lying (I know little about genome business), but I think Ctr 1 is actually the gene, and some simply reference the protein the same. Balance of copper is critical and so it is buffered by export and uptake genes. Ctr 2 is the other uptake gene.

    Hope this helps.
  16. Valentijn

    Valentijn Activity Level: 3

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    It looks like their proper name is SLC31A1 and SLC31A2
    Lou likes this.
  17. Firestormm

    Firestormm Senior Member

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    I experience what I describe as muscle weakness but I have never been sure if this is connected with muscle strength. It is one of my main symptoms along with muscle pain and general discomfort of the muscles.

    First thing in the morning when my feet hit the floor and I rise; my legs are 'jelly-like' in feeling and when I walk at times I describe myself as having 'jelly-legs'. But I am able to walk. So I am not sure what's happening.

    Muscle weakness is termed in several criteria and primers I noticed on a quick Google; but I couldn't find any published papers that coined the term and linked it to ME. So could it be a descriptor but not a recognised medical distinction?

    Myalgia is of course firmly linked to ME but is muscle weakness? Or is weakness a patient-descriptor i.e. something we use as a term to describe the feeling?

    I do experience difficulty in supporting weights at random times and with random weights as has been said I think above; raising a mug of tea can be an issue or supporting a book. But I can't connect these with specific times or for example, following some exertion or activity. However, it is usual to experience this more when I am trying to rest so perhaps it is - as seems to be intimated by the Primer etc. - an example of PEM.

    When enduring 'muscle strength tests' I have always been found to be normal. Or at least in these very basic tests nothing abnormal was flagged that warranted further investigation.

    The DHSS Primer states:

    The Overview to the 2003 Canadian Criteria states (note this falls under Neurological/Cognitive and not as above):

    I am sure muscle weakness, along with soreness, and pain, and spasms; appear in other criteria but I couldn't quickly locate them.

    In the NICE Guideline - the Full Guideline from 2007 - Patient Representative 2 (page 103) provides the following recollection:

    NICE (page 148) also says that the (I presume CDC) 2002 criteria includes the phrase :

    as part of it's symptoms checklist.
    NICE in their Guideline for diagnosis do not include 'muscle weakness' but then again they only include (page 34):

    However I wonder if:

    might also be considered by the layman and doctors alike to include reference to 'muscle weakness'?

    What I suppose I am getting at is, is Muscle Weakness a defining symptom of ME or part of something else that is considered defining? And is 'muscle weakness' a patient defined term but not medically defined?

    When I was infected with a virus, or when I have a cold, even the flu, or when like now I am feeling exhausted, I generally feel weak. But there is a definite feeling of muscle weakness too. And often this is persistent. But whether it is a feeling and part of something else that is more generally defined - like PEM - I really couldn't say.

    Muscle problems are for me a defining part of ME, have always been and should always be considered to be so. I think weakness is part of the whole :)
    rosie26 and Moxie like this.
  18. tamsyn

    tamsyn

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    Muscle weakness is a defining part of my ME symptom. I was once required to do a stationary bicycle test for a heart test. I was supposed to pedal for a certain length of time and get the bike's speedomoter up to a certain speed. But the longer I pedalled, the slower the bike went! My legs got weaker and weaker even though I was putting all my effort into pedalling. The test had to be halted and I never did get that bike up to required speed. Trying to work above head height (like painting a ceiling) makes my arm muscles start to shake and cramp. However, gentle exercise, like daily walking, is fine as long as I'm not crashed. Once I crash, or if I have a flu or cold, then I get that 'jelly leg' feeling -- PLUS I get actual muscle stripping in the legs -- I can visually see my legs shrinking, and the previously firm muscle goes mushy and floppy to the touch. Then I have to slowly rebuild the muscle over time with protein drinks and gradual exercise. The muscle wasting is accompanied by severe nerve pain in my legs. Note that before contracting ME I cycled, climbed mountains, kayaked, sailed big boats, hiked...you get the picture. Now I can only walk my dog twice a day on good days, and muscle weakness is a big part of this problem.
    Firestormm likes this.
  19. Firestormm

    Firestormm Senior Member

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    tamsyn thanks for that. It reminded me of my attempts at cycling and painting too funnily enough. You are right. Along with the pain and inability to hold the paintbrush up for long; there is the weakness and trembling too.

    I've just summoned up the energy to hoover my carpet in the new flat. That is I find terribly hard now. And it does incur the weakness and trembling in my legs that you describe. Now I sit down and pace the whole process - but the 'weakness' does not result in my collapse: it is a feeling.

    I have never been inclined to push it to the point of testing if weakness would result in an inability to continue standing; never to that degree. So I still don't know if 'weakness' is something definitive and something that can be tested for as a specific result of whatever is wrong with our muscles.

    If anyone can find a published paper on ME and muscles that does point to 'weakness' I would be grateful. :)
    Moxie likes this.
  20. Valentijn

    Valentijn Activity Level: 3

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    I'm not sure about research, but immediately after exertion my oxygen saturation drops to a "not good" level - 95% and under. Depending on how far past my limits I go, I struggle to maintain oxygen levels for hours or days afterward. During that period, my heart rate stays very elevated to compensate for whatever causes the low oxygen, or sometimes fails to compensate and oxygen gets very low.

    So maybe a pulse oximeter could help you see what's happening, both with regards to oxygen and with regards to heart rate.
    Moxie and Little Bluestem like this.

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