1. Community
  2. Heart Health
  3. Autoimmune Disorders

Does this sound familiar to anyone?

Posted , 7 users are following.

jo06925
jo06925

I have another post over on the shoulder forum, but I think whatever my problem is may be autoimmune because it comes and goes. Here are a list of symptoms:

~Started with chest/clavicle pain about 6 years ago. EMG for heart attack negative.

~ mild pain when writing on a whiteboard (im a teacher) that kept progressing in severity. 6 years of PT unhelpful.

~ diagnosed with calcific tendonitis of the shoulder, but since then, told that I dont have it and x ray was normal.

Recent symptoms

~shoulder pain (right side) when doing pulling or pushing up motions. Otherwise have a full ROM of the shoulder. The pain is mostly in back close to the armpit.

~visually there is a depression in my shoulder, but my shoulder blades are straight.

~ pain and swelling in clavicle on right side

~pain in ribs (side to back) on right side when coughing/sneezing.

~pain travels from the shoulder/clavicle/armpit down the arm, pain can be in the elbow.

~pain in the hips and SI when sleeping (awful pain, I wake up screaming)

~swollen glads in neck/under armpit.

~ rash on hands that is either dyshydrotic ezcema or PPP.

~trouble swallowing (not painful)

~pain sometimes shoots to the teeth/head on right side.

~ sometimes dropping things with my right hand. (I could just be clumsy)

Right now my "flare up" seems to have subsided. My rash is also almost gone. I have had to quit my job twice over this. The pain is awful. It makes me cry. OTC pain medication, Tramadol, Lamictal have all been perscribed but do not help at all.

Does this sound familiar to anyone? I'm at the end of my rope. I have seen at least 10 doctors (ortho/neurologist/neurosurgeon). Does it sound like I should get a rheumatologist involved?

2 likes, 7 replies

7 Replies

  • CtKathleen
    CtKathleen jo06925

    Posted

    Yes, try a respected rheumatologist. 

    In my experience, many rheumatologists don't have adequate knowledge/experience re my illness (Ankylosing Spondylitis).  Although many of those same rheummies have claimed expert knowledge---FAIL!

    I am not a physician. While reading your experience, my thinking went to AS, PsA. 

    I hope you find answers and help soon. 

    • jo06925
      jo06925 CtKathleen

      Posted

      Thank you for your reply. I know someone with AS, and I know she has a really tough time. I hope you're feeling ok these days?

      I have scheduled an appointment with the director of the rheumatology dept in the country I live in, but I have had it with the doctors here! I get the feeling almost everyone with an autoimmune disease has. Luckily for me, the doctors in this country have made AS a specialty of theirs, so if I have AS, I will be in good hands. I thought AS mostly started in the SI joints though, is it common for it to start in the shoulder as well?

      Thanks again for your reply, greatly appreciated that this sounds like something to someone and it isnt all in my head, or just anxiety (as i've been told many times.) A million thanks!

  • phyllis48183
    phyllis48183 jo06925

    Posted

    Sounds like you really need to see a rheumatologist some symptoms are like mine .I have pmr good lluc
    • jo06925
      jo06925 phyllis48183

      Posted

      I thought about PMR, but im only 32. I just had a baby and I am terrified honestly. I have had 2 doctors now who are looking for tumors and another who is sure I dont have a tumor.

      I've had countless xrays an ultrasound and a cervical MRI. The ultrasound is the only thing that has showed anything. The current guess is nerve sheath tumors, but having the hip/SI symptoms has really been a bit of a blessing, because it makes me feel that I dont have tumors. Is there a version of PMR that affects younger people, or can younger people have the disease? If you dont mind, may I know your symptoms?

  • lisalisatheone
    lisalisatheone jo06925

    Posted

    many can understand your frustrations.  i know i can.  yes, absolutely get a rheumatologist involved.  you're going to need more testing and a good heart to heart with uyour doc about your symptoms.

     

  • phyllis48183
    phyllis48183 jo06925

    Posted

    I do not drink hardly ever did years ago and Inhave PMR and eat fish 5 times a Week. Some people on blood thinners like me cannot have all those greens...So your advise does not apply
  • jo06925
    jo06925

    Posted

    I just wanted to stop back in and update this discussion in case someone is experiencing something similar and are at a loss as to what is going on.

    I was diagnosed with an autoimmune disorder called palindromic rheumatism. Thank you to everyone who replied!

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.