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Connective Tissue Problems?

Discussion in 'General ME/CFS Discussion' started by Konflict, Oct 23, 2017.

  1. Konflict

    Konflict Senior Member

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    Has anyone developed any sort of connective tissue problems? After taking methylfolate, methylcobalamin and p5p I have developed EDS type symptoms, as well as receding gums and loose teeth (collagen related). Also feel my chest bone click a lot. These clickings/cracking very weaker with time and looser/more unstable....I feel I won't live even a semi decent life if I'll need reconstructive surgeries, spend all my time in a wheelchair, and need braces for my major joints. Has anyone gotten any help with their connective tissue issues?
     
    Isaiah 58:11 likes this.
  2. Deltrus

    Deltrus Senior Member

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    I've had connective tissue problems since before I started different supplements. Only on my right side though, most of my problems are right side. I really doubt there will be any treatment options.

    If things get out of place, I do a horse stance type thing and try to tighten my front facing muscles. This seems to put all my muscles/joints/nerves/blood vessels in roughly the right alignments. Tightening rear side muscles or tightening tight muscles always messes everything up more, so I have to be careful when I stretch.
     
  3. Konflict

    Konflict Senior Member

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    Looks like I'm dead then. I could give a damn about any other symptom to be honest, most symptoms of CFS are child's play compared to the connective tissues disease.

    This is progressive, fast progression in less than a year. All my joints used to be tight (I'm male, and women usually have more loose joints due to estrogen and progesterone) but what I'm mostly worried about are my neck and spine. Yea I can survive near future finger/wrist/knee dislocation....but what about when that happens to my neck and spine? Don't know if it's even worth living through that and waiting for it to happen.
     
  4. ChrisD

    ChrisD Senior Member

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    East Sussex
    @Konflict I've shared the same emotions as you regarding connective tissue. About two years ago when i became ill, i suffered from Reactive arthritis which morphed into generalised joint pain and Fibromyalgia, and from this point on my joints became extremely weak and prone to constant crepitus. It feels very concerning, and everyone you talk to about it (including doctors) just tell you that it is an ordinary symptom of aging - but nothing is normal about every joint in your body cracking loudly!

    I've tried a lot of different protocols since then and feel that I have made some progress in firstly eradicating my Joint pain and Fibromyalgia, now I am just mainly suffering from ME. Also I have strengthened my joints since then. But at the time I went to all kinds of crazy lengths, buying heavy duty braces for my knees as they were weakening and turning inwards. I saw several Physios and Chiropractors who were also concerned and kept telling me to keep going with the doctor to check for things like EDS, MS but all the tests were to no avail 'everything is normal'. Just like you, i was sure that I would need surgery, I even started looking these things up and trying to put some money aside for private surgery.

    Anyway, after getting on various vitamins, minerals, probiotics, doing detoxes etc. i feel my body ever so slowly strengthening over the last year and feel a lot more confident now that all those key weak areas have either repaired or they are repairing. Areas that are still weak are my upper spine, my jaw, my knuckles and knees. But before I felt that everything was falling apart; my sternum constantly popped, my whole spine had to be corrected weekly by the Chiropractor, my ankles were really weak and would roll over, my hips were really painful and very weak so I had to constantly maintain a robotic posture, my neck muscles would stiffen and crack and causes loud cracking noises within my skull, there are many more things I could mention too.

    So what I am trying to say, is that with the right protocols and correcting the immune system and lowering inflammation, I believe things can get a lot better for you. I can't deny that I am still worried today that permanent damage has been done to joints and my spine and I may never return to that full level of activity that I was at, but I have a lot more hope now for healing :)
     
    Rlman likes this.
  5. perchance dreamer

    perchance dreamer Senior Member

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    I've recently started transdermal LDN, and my back and neck pain is better now, not as much as I want, but I'll take it! LDN is thought to help with inflammation and the immune system. There are many posts on these forums, and I'll start another thread soon about my experiences with it when I have more time.

    LDN is too short of a search term here, but if you search the back way and google LDN Phoenix Rising Forums, you'll get a lot of hits.

    LDN can be a wild ride at first with side effects and adjusting to the medicine, but it's helped my pain.

    I benefit sometimes from a chiropractic session in which she uses only the Arthostim, not direct manual adjustments. Lying on an acupressure mat also helps because it revs up the circulation in my back and neck.

    Another thing you might look into for pain is prolotherapy. It helps tighten ligaments that have become loose.
     
  6. Konflict

    Konflict Senior Member

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    Thanks for the long reply man. This is truly very scary because idk what happens if this continues to worsen.

    Were there any specific protocols/supplements/vitamins that seemed to help the most, or at least helped somewhat? I've literally found nothing so far....been on a dairy/gluten/soy free diet and I just keep getting looser tendons :/

    I've also tried parts of the Cusack Protocol (aloe Vera liquid, vitamin c, pqq, Culturelle probiotic, glucosamine, d ribose, L arganine, food grade DE) but didn't help slow anything down.
     
  7. ahmo

    ahmo Senior Member

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    When I realized I have sulfur intolerance, I learned that sulfur can cause lax joints. When I eliminated sulfur, I found improvements. Also, you might look up pyroluria. I think there's a connective tissue component there.

    Have you quit the supps you listed? Is it possible that the onset of your issues was just coincidentally related to them? sorry, that's all I can add. Hope you have some luck soooon.

    http://www.hputest.nl/evraag.htm Online questionnaire to suspect pyroluria
     
  8. JT1024

    JT1024 Senior Member

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    I definitely have connective tissue problems. My fibromyalgia started after muscle imbalance due to over training back in the 90's. Physical therapists were the ones to first suggest Fibro. They performed myofascial release to release fascial restrictions but the restrictions would return the very next day after sleeping.

    I've now developed osteoarthritis in multiple areas of my body bilaterally. In addition, I've developed a skin "rash" that I've been told is Granuloma Annulare. I'm not sure this dx is accurate but from what I've read, it involves the degradation of collagen. Given that deterioration of cartilage (which contains collagen) leads to osteoarthritis, I've suspected something wrong with my connective tissue for years.

    I'm suspecting some type of auto-immunity but I could be wrong.
     

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