Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Can ME cause visible inflammation or not?

Discussion in 'General ME/CFS Discussion' started by Ambrosia_angel, Feb 16, 2017.

  1. Ambrosia_angel

    Ambrosia_angel Senior Member

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    can ME cause visible face and hand inflammation? And also possible airway inflammation causing asthma-like symptoms?

    My eosinophils and RF are high but my ANA is okay.
    Therefore my consultant said I have obvious inflammation but she can't do anything from a rheumatological perspective. :confused:

    It's not an allergy. And the only logical thing is that it could be Churg Strauss now called Eosinophilic Granulomatosis with Polyangiitis but it's so extremely rare that I can't even imagine having it. Not to mention that I'm younger than the age that most people are diagnosed.

    So now I'm thinking it's ME but I don't know what to do? I don't know how to improve inflammation with supplements and holistic remedies because I don't really know what's causing it.

    I have an ultrasound of my hands in a month and an ANCA test in 2 weeks to rule out I'm guessing certain types of vasculitis? I don't even understand the test.
    I was told that if I get worse I should go to A&E or my GP which isn't really reassuring so I want to be productive in improving my symptoms. Would doing methylation help now if it helped me recover before?

    A lot of my symptoms are similar to before with added swelling and more prominent body weakness.
     
  2. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Just to make more sense by visible I just mean inflammation that can be seen with the naked eye. Not on scans and other types of tests.
     
  3. lnester7

    lnester7 Seven

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    Definitely yes, when I crash plp close to me start why are you swollen. and my head and face do swell., The doctor wanted me tested for angioedema but I couldn't get the test done (long story short the plp that took the blood messed it up). And since I don't have a new place haven't done it yet. I do know because I feel burning in spine and head too (w the swelling).

    I am not eating any allergy foods (I developed w cfs). But the swelling hasn't happen for a few months.
     
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  4. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Really? I've come across angioedema before. Have you ever found a way to improve the swelling or do you just treat the crash as a whole? I've been researching an anti inflammatory diet but a lot of the stuff I follow to a certain extent anyway. It's only slipped up a bit recently because of the struggle to cook.

    Thank you for responding!
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I think the answer has to be no - ME does not cause visible swelling. Some people with ME may have swelling but I do not think it makes sense to attribute it to ME. One has to assume there is some other cause.

    It sounds as if you are in the middle of a diagnostic process and you need to wait until you get a firm opinion from your physician. High eosinophils do not necessarily mean anything specific. Nor does a rheumatoid factor. If there is swelling of hand joints and a rheumatoid factor that would tend to point to RA but facial swelling does not occur in RA.

    I don't think there is any point in trying treatments until you now what is wrong. I am not sure what 'doing methylation' means. I don't think we have any reason to think methylation has anything to do with autoimmune disease, or ME for that matter.
     
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  6. Ambrosia_angel

    Ambrosia_angel Senior Member

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    It's not in my joints it's in my soft tissue (I think it's the muscles) between the thumb and finger which is why I'm assuming that she couldn't progress because it's probably odd compared to other types of swelling that she sees. She said that I have to wait for the ultrasound to get a better idea of things.

    I just feel a little bit worthless by not being able to do anything to see if something will alleviate my symptoms while I wait so that's why I'm curious. I guess that's probably something I need to work on within myself.

    I did a simplified methylation protocol which I feel aided in improving a lot of my symptoms before.

    Thank you for responding!
     

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