Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Physiological Changes

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by ChrisD, Apr 22, 2017.

  1. ChrisD

    ChrisD Senior Member

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    Does anyone else have concern about the Physical changes that happen through M.E./CFS? My Chiropractor showed me via X-ray that I have a straight cervical spine (Should be curved for normal nervous system and immune function), he said that this is a one way street and it is hard to restore the curve, we just need to stop further degeneration :(

    Also my shoulders have rounded inwards, I try to force them back as much as I can to relieve tension on upper back muscles and chest but the general muscle weakness causes this not too hold. All of my joints have been significantly weakened - particularly my knees which constantly 'crack' loudly and have visibly fallen inwards, changing the way that all of my leg muscles are working and causing some discoordination.

    As someone who used to be fairly sporty, this is all very hard to accept as I would love to one day return to sports after recovery but don't know if I will be able to, the spinal stuff is of course the most concerning....

    It makes it even more frustrating when it is said to be a psychosomatic disorder, we need a catalogue of Skeletal X-rays of PWME to reveal the truth....
     
  2. slysaint

    slysaint Senior Member

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    I was going to ask other people about this ie 'cracking joints'. This started with my knees very early on so loudly that people would comment on it (almost everytime I stood up) and ask 'does it hurt?'. But over the years ALL my joints 'crack' loudly.........places where I didn't even know I had joints!
    My original GP had no answers and have not asked any others.
    I am also very aware of the rounded shoulders issue and the 'humped back look' usually associated with old age.
    So I too make a concerted effort to try and keep my back straight, shoulders back, but it is very tiring and sometimes painful.
    I appreciate some of this might be caused by the ageing process, and I did use to do quite a lot of physical stuff before I fell ill, but it started at the onset of illness.
    I too would like some answers/possible explanations.
    @Jonathan Edwards ? If you are not too busy. Thanks.
     
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  3. lansbergen

    lansbergen Senior Member

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    My joints do not crack anymore. I think there was not enough Lubricant fluid. The same problem as with my pleura. That improved a lot too.
     
  4. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    I've got the same problem with the shoulders. I think it's simply that we dont have enough energy and muscle tone to keep our shoulders in the correct position most of the time, and with time it becomes permanent. I was thinking about buying a corsette to correct this, I guess it can permanently strech the muscles and tendons that keep the shoulders in the wrong position by pulling them towards the back. Also I'd like to ad that I have an abnormal way to walw, I walk like a "rag doll", waving my arms and legs, simply because I don't have enough energy to keep them in the righ position
     
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  5. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
  6. erin

    erin Senior Member

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    Same problems with the shoulders and the cracking joints too.
    Slightly swollen ankles to add on the list.
    And also my skin is much looser, I know I'm getting old this is expected to happen, but when I look at women at my age their skin is not as saggy as mine.
     
  7. Gondwanaland

    Gondwanaland Senior Member

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    How did you improve that?
     
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  8. lansbergen

    lansbergen Senior Member

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    Immunemodulator levamisole.
     
  9. Jonathan Edwards

    Jonathan Edwards Senior Member

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    The important thing is to distinguish the position you hold the skeleton in from actual changes in joint mobility.

    The cervical spine is normally straight if x-rayed in flexion and curved if x-rayed in extension. (You think it would be straight when you are straight up but actually it is the reverse.) Unless the x-ray was done in a chosen posture whether it is straight or curved means nothing. To tell if there is a problem with the range of movement of the spine and shoulders all you need to do is stand against a wall. If the spine and shoulders are mobile you should be able to stand with heels, buttocks, shoulder blades and back of head all against the wall. If it is hard work to get the head against the wall there is likely to be some loss of flexibility.

    Shoulders can droop either down or forward. Downward drooping as in Charlie Chaplin drooping shoulders, as opposed to Muhammed Ali's square shoulders, is due to absence of much meat (muscle) between the shoulder girdle (collar bone and shoulder blade) and the ribcage. I think the relevant muscles may be serratus anterior and subscapularis. So basically it is a matter of how much heavy work you do with your arms. Having sloping shoulders is fine if you are not wanting to be an athlete and indicates no medical issue. You can raise your shoulders using the trapezius muscle but you have to do this on purpose so when at rest or in a relaxed walk you do not control your shoulder shape - the meat mass does. (Or your raincoat shoulder pads.)

    Shoulders will droop forward if the thoracic spine in held in a forward curve and that is what increases as people get older. A lot of people stand with their head jutting a bit forward with a slight shoulder hump by fifty, but others remain straight as a ramrod. By seventy the head jutters are obviously bent but the ramrods are often still straight.

    What is happening here is that the discs in the thoracic spine are developing a fixed wedge shape with the front thinner than the back. The bones of the spine do not change shape at all unless they fracture so most old people have bent spines because of their discs, not bones. Nobody knows exactly what happens as there are no controlled trials of standing up straight for forty years. However, it seems clear that some people lose the ability to keep their discs flat and gradually bend forward with the front of the disc becoming fixed as narrow so that however hard they try they cannot stand straight. But there are various bits of evidence from conditions with abnormal muscle function indicating that the way people hold themselves does matter. It is likely that if you hold your thoracic spine bend forward in middle life the discs gradually solidify in a wedge shape and then you cannot straighten. So the sensible thing to do seems to be to make sure you deliberately keep the spine straight at least some of the time.

    What may be most important is lying in bed. I suspect that it is a good idea to ensure that some of the night you lie on your stomach with the spine straightened out. This is a standard recommendation for ankylosing spondylitis, where the wedging of discs becomes fixed by bony bridges. I also suspect that no more than one thin pillow is a good policy.

    It is true that some elderly people have a curved spine because of wedged vertebrae from fractures but there was an interesting Dutch study that suggested that the people who wedge their vertebra forward are those who are already bending forward because of wedged discs.

    A small proportion of people get trouble with the cervical spine as well, with disc wedging. This can be associated with degenerative change at the margins of the vertebrae and sometime there is a specific forward being at one level. I suspect the same basic principle applies that keeping an upright posture is the best defence against curvature. Manipulation is not good idea and can cause serious harm in the neck region.

    I don't think there is any particular reason to think that any of this has any relation to ME, except that PWME may adopt poor postures in chairs or beds I suppose.

    Cracking joints are generally not a sign of disease. They usually indicate a vacuum occurring in the joint. That may be more likely to happen in joints that are not routinely used in regular exercise since movement of joints stimulates the production of the lubricating fluid. If a joint surface is damaged, as in a knee for instance, then clunking noises can develop, but most people do not refer to that as cracking. I suspect cracking joints in ME is not a sign of any disease but simply lower levels of use.
     
  10. lansbergen

    lansbergen Senior Member

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    I doubt that.
     
  11. lansbergen

    lansbergen Senior Member

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    @Jonathan Edwards When I was at my worst I could only lay in the fetus position.
     
  12. ChrisD

    ChrisD Senior Member

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    My crepitus occurs indeed when I have low activity levels and relents during activity but quickly returns after activity, so for me it is surely some kind of low-grade inflammation/immune attack on joint tissue?

    @Jonathan Edwards Thank you for the lengthy and thorough reply, it is reassuring to hear your opinion. I should mention or put into my Bio/signature that I am only 26 so I would not be expecting to see these signs of aging so early hence why they are worrying. Based on the principles of how the nervous system and immune system work in coordination with the spinal alignment (chiropractic principles), is it not of concern that it is very difficult for us to keep a good alignment due to weak muscles and therefore putting pressure on nerves that regulate our CNS/ANS annd immune response? something of a catch22 situation I would say.

    I am very conscious that if I spend a week slouching and keeping poor posture then my condition worsens, so I am nearly always sat like a robot, bolt upright or when I am standing, i am not leaning on one leg i.e. affecting pelvis alignment. But this is hard work both physically and mentally.....
     
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  13. lansbergen

    lansbergen Senior Member

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    I think so. The less severe the flares became the less problems it gave.
     
  14. Tunguska

    Tunguska Senior Member

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    Agreed with posts above, the synovial fluid health makes a big difference in perception of joint problems and compensates for actual damage somewhat, and compounds in the fluid also protect the structures (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2666563/). The most researched compound that works has to be hyaluronic acid https://en.wikipedia.org/wiki/Hyaluronic_acid . But more generally, the fluid (along with cartilage/collagen) is heavily derived from glucose and protein compounds, and any insufficiency, disturbance in metabolism or mishandling of either is a problem, which means virtually anything can ruin it.

    Far as I can tell the most researched generic mechanism for actual cartilage/collagen damage is MMP expression https://en.wikipedia.org/wiki/Matrix_metalloproteinase, whose job it is to degrade them in wound repair, but it gets inappropriately activated in response to wide range of conditions and substances: immune response (TNF-x, IL-x), ROS, drugs, etc. (There are also MMP inhibitors)

    Even just sticking to basics, simple excessive ROS (which hyaluronic acid normally protects against) induces MMP. It's not a settled fact that ROS is a common cause of joint problems, but the point is, there's a lot room for doubt...
     
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  15. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Cracking crepitus is not a sign of inflammation or immune attack. The crepitus of damaged joints is quite different from 'cracking'. ME is not associated with inflammation as such so there would be nno reason to link the two.

    I am not sure what you are meaning about the nervous and immune systems working with spinal alignment. The chiropractic theory about spinal misalignment is groundless as far as I am aware. Posture does not have a significant effect on whether you have nerve pressure problems other than short term pins and needles if you stay in one position too long. It has nothing to do with the immune response. I would be wary of the sort of pseudoscience that some practitioners dream up.
     
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  16. lansbergen

    lansbergen Senior Member

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    @Jonathan Edwards

    Can you explain why the sounds always stopped towards the end of a flare? For me sounds gone meant the end of the flare was nearby.
     
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  17. missfire

    missfire Knock Down, Bounce Back

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    Have you seen any clinical trials for Ankylosing Spondylitis using stem cells? (at any point?) I been looking around for options.
     
  18. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I am not sure what you mean by trials of stem cells. Stem cells are not really a treatment as such. They are mostly used to replace cells killed by cytotoxic therapy and there is no rationale for killing cells in ankylosing spondylitis except perhaps mature CD8 T cells and that would not require stem cell rescue.
     
  19. singinggem

    singinggem

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    I've developed sacroiliitis and now am about to have an MRI a year on from that to check that anklosing spondylitis isn't the cause. In the mean time I have developed quite bad stiffness in my knee and intermittently my neck. I have EDS so whether it's related to that or the ME I don't know. Interestingly I had guttate psoriasis last year and this has all got worse since then; I recently met some one who had been told she had ME for 20 years and then was told it was psoriatic arthritis- though of course you could have both, maybe it's all connected? I've just started doing feldenkrais to try and halt the stiffness and am finding it really helpful - certainly makes you very aware of your own spine, how you move etc and is very very gentle.
     

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