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A Grab Bag of Symptoms (Joint, Lymph, Vascular...) Thoughts?

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by evatious, Sep 4, 2015.

  1. evatious

    evatious

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    So, for the past couple of years I’ve had issues with my joints and I wondered if I could get peoples' thoughts on this bunch. My GP never really explains what he’s looking for - hence my search for answers.

    A few of the tests I've had done:
    HbA1c: 32 mmol/mol A
    ENA antibody: negative
    Rheumatoid factor: <15.0 IU/mL (<30.0)
    C Reactive Protein: 1.3 mg/L (<5)
    Ds- Dna 15.5 IU/mL: (0-99.9)
    ANA anti nuclear antibodies Positive
    Pattern: Speckled, Titre: 160
    Pattern: Nucleolar, Titre: 160

    My Endocrinlogist has also just done a blood panel for myositis and that came back clear. I did have a bad reaction to methimazole previously (severe muscle aches in shoulders, hips and thighs to the point I couldn't walk.)

    However, my main symptoms that are joint related are:

    - Crepitus in my knees and neck. My knees can be heard across the room sometimes and it’s been worse when I’ve been hyperthyroid.

    - The joints in my fingers and toes randomly feel like they’re not quite aligned and I’ve put one of my finger joints out of place twice doing something really mundane (using a hammer and the handle pressure has forced the joint out of place.) They’re painful but useable and seem to settle by themselves. I’ve never noticed if it’s always the same joints, it seems to vary.

    - I’ve also had an AC joint injury that led to bursitis and inflammation that spread up my neck and across to my other shoulder. I couldn’t even tolerate the touch of fabric on my skin at times. (An ultrasound guided steroid shot cleared that up.)

    (These symptoms may come back to pre-existing conditions (lipedema and now lymphedema) and/or my Grave’s Disease. I’m still waiting on a vascular referral to come through regarding the lymphedema because I’ve had uneven swelling on top of the original (bilateral and symmetric) lipedema. My right leg swells more, right to the top of my thigh, although both legs have it. It is non-pitting and most likely not Graves' related pretibial myxedema.)

    Any thoughts and suggestions would be greatly appreciated.
     
  2. justy

    justy Donate Advocate Demonstrate

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    Do you have M.E as well? fatigue, cognitive issues etc? have you been tested for Lyme disease and or co infections? Ifd you are in the UK I suggest sending your blood off to Armin labs or infectolabs for testing.
     
  3. evatious

    evatious

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    I have CFS and also significant anxiety and memory/attention problems that have become *much* worse in recent years. I'm autistic though so some of that is pre-existing, just made worse by illness. I haven't been tested for lyme or other infections.

    It's something I wondered about (but I may just be over-thinking?) I'm in NZ and for the most part, if I ask for a test my GP will run it (only if I know what to ask for.)
     
  4. Sushi

    Sushi Senior Member Albuquerque

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    Another thing you might like to read about and perhaps bring up with your doctor is Ehlers-Danlos Syndrome which has some of these symptoms.
     
  5. evatious

    evatious

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    That's a good tip, thanks!

    I've just started looking into it. I do have translucent skin that might indicate something else going on and that has been associated with EDS.

    But I also recall that the translucent skin (particularly noticeable on my legs with very visible hair pores) arrived with the lipedema at puberty so probably related to that?
     
  6. ahmo

    ahmo Senior Member

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  7. evatious

    evatious

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    Thanks @ahmo

    I've been reading through that. I don't think my condition is EDS although I have a few similar/same symptoms. I'm really just frustrated that my vascular referral is taking so long to come through. I think a vascular specialist might be able to examine me and do whatever scans and tests needed and suddenly I'll have some answers.

    My toe bones (just one at a time it seems) go out slightly just walking, just individual joints very slightly from pressure, then they settle down almost immediately. I've had bruising show up on my fingers if they've gone out, but that seems rare and I'm not noticing any other inflammation or visible signs that something's not right. It's just weird.
     
  8. ahmo

    ahmo Senior Member

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    @evatious I used to have a very loose shoulder , one in particular. When I quit sulfur, this, as well as some discomfort/tightness(?) in my fingers also disappeared. I can't remember the exact symptom cluster, but I found them distinctly linked to sulfur. Lax joints is also part of the pyroluria syndrome.

    http://www.hputest.nl/evraag.htm Online questionnaire to suspect pyroluria
     
  9. evatious

    evatious

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    Thanks @ahmo, I've not looked into sulfur being an a problem. I think one of my genes suggested this might be an issue though and pyroluria is another thing for me to look at.

    It doesn't *seem* diet related to me (as yet) although I've yet to test lots of foods I've eliminated. I have a feeling that nightshades (in particular) may make the joint issue/s worse...

    Just having a quick look at pyroluria online. I know that while I've been hyperthyroid (and my previously very heavy periods had almost stopped) I registered as having slightly high iron. I'd always been very low in the past.

    My thyroid hormones are fluctuating (from low to high and back again on a monthly basis and med levels) and that doesn't seem to make any difference either although I do have a bit less general swelling and edema when I go hypo.

    I was wondering about arthritis? But I think my tests ruled that out or at least weren't definitive.
     
  10. ahmo

    ahmo Senior Member

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    Active Hashimoto's can cycle between high/low.
     
  11. evatious

    evatious

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    I have Graves' Disease (hyperthyroidism) but my anti-thyroid meds aren't successfully tweaked yet. Unfortunately, my specialist wants me to be towards the hypo end of the range. Which has the crappy added side-effect of bringing back primary dismennorhea, depression and migraines. I just can't win... :cautious:
     

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