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The very confusing world of autoimmune diseases

I am a 44 year old RN…I have not been told that I have RA by a Rheumatologist, but my positive RA factor and symptoms and my primary MD all let me know that I, do in fact have it. (I went to 1 Rheumatologist that tried to tell me that she was interested “to see what this turns into” and give me the preliminary diagnosis of fibromyalgia…) I said that all these things indicate that I have RA, including family history as my maternal grandfather had severe RA…very evident by looking at his hands. On the other hand, my paternal grandmother had lupus and my father died of Hogkin’s Lymphoma…I have at signs and symptoms of just about every connective tissue disease known…I’ve had a positive ANA, non irritated chest rash that gets brighter in the sun, discoid lesion on my wrist and chronic kidney problems. My sister has been diagnosed with undifferentiated MCD with scleraderma being the prominent disease and my brother had a positive ANA and a positive DSDNA indicating possible lupus…I took him to a Rheumatologist and he walked into the room and said “What are you doing here?” I explained that the primary MD said that his blood work showed that he might have lupus and to go see a Rheumatologist…he said (to my brother) “You don’t have lupus” and walked out of the room…I looked at my brother and said “Wow, I thought we were going to see a doctor, not God; you must be feeling so much better now that he has cured you.” He never looked at a lab, ordered a test…nothing. I was apparently foolish and was honest with my employer about my health issues and was terminated and now have no insurance. I have been in a flair of what ever this is for months. My actual symptoms include: 1. severe fatigue 2. tendon and ligament pain in ankles, knees, hips, elbows, wrists 3. fingers that feel like they have been smashed with a hammer and are beginning to twist and disfigure and tendonitis in my wrists 4. periods of intense brain fog (this is why I can no long work as an RN, unless whatever treatment I eventually end up on is a livesaver), 5. severe memory issues 6. dry eyes, nose, mouth (severe)…yes I know the sj….whatever syndrome 7. stiffness 8. back and neck pain that crunches and grinds with “mild” DDD per my MRI (after a month with a chiropractor and an investment in an inversion table) 9. nodules developing all over (fingers and hands, back and neck) 10. permanent red rash on my chest without itching or irritation, that gets darker in sun 11. round discoid rash on left wrist 12. frequent sinus pain, pressure and inflammation and infections (had sinus surgery for deviated septum and such…the dryness causes irritation witch causes inflammation witch causes infection…pain, pressure in eyes and ears 13. chronic urinary tract infections with noted sensitivity to yellow dye #5 (these are atypical with the only symptom being such severe fatigue that I can’t get up off the sofa) always many WBCS in urine 14. frequent swollen glands 15. intimate relations cause BV 16. organ inflammation… inflammatory feeling around heart (gee should have had an echo when I had insurance…) and sharp intolerable pain in the area of my right kidney 17. severe constipation. Then, of coarse there’s the depression…who wouldn’t be depressed…I think I have overlap…Celebrex helped with the pain…no insurance ….so now just on ibuprofen, antidepressant and thyroid meds and I was most likely misdiagnosed with adult onset ADD…but the meds helped some of the worst symptoms (fatigue and pain) so I took them for several years and now can no longer afford them…it was the brain fog I think. I read interesting articles on brain fog…some people are trying to blame medicines…I haven’t taken biologics or steroids or anything other than ibuprofen and Celebrex and that symptom developed years before the Celebrex, so it is NOT THE MEDS!!! My triggers are: yellow dye #5, stress (any kind) and barometric changes in the weather (that I have noticed) I have suffered untold issues from this illness: (lost jobs from running late due to stiffness; felt such intense sinus pain/pressure that it felt like I had a concussion; constant misery from pushing myself to try to function in a demanding and fast passed world; left my husband; had a tubal pregnancy after having my tubes tied that caused severe fibroids and other problem, spent a fortune on my decaying teeth (dry mouth)…) I look healthy and people expect me to act like a healthy person…) I understand a lot about the way the human body works and would love the opportunity to help research connective tissue disease and any, ANY insight as to what specific illness (illnesses) this actually is or how best to treat it or even treat specific symptoms…like through my sister, I found that a nasal emollient soothes my dry sinuses and reduces the number of sinus infections.

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Comments

  • StillFlaring
    3 years ago

    So sorry you are going through all of this. I believe you, utterly and completely. I am 51, and was finally diagnosed last year with RA (with a RF test of 413), Fibromyalgia,
    as well as Sjogren’s Syndrome (LOL – “dry eyes, nose, mouth …yes I know the sj….whatever syndrome”) – FYI – the Sjogren’s can be much more than just dry eyes, nose, mouth – it can cause severe digestion issues and other problems. More info here -https://www.sjogrens.org/home/about-sjogrens

    You have GOT to get to a doctor. If they want to prescribe meds – ask for samples, and if it works for you, write letters or call the pharmecutical companies and ask for help. Many will help.
    Good luck, and I will be praying for you. Do please update us on how you are doing Virginia.

  • Elizabeth Riggs
    4 years ago

    I agree with Kat. Find another rheumatologist – a good one. You may have to go through 5 or 6, even 10 before finding the right one. And while you are seeking the new Rheum doc, work on the insurance. Also, find an ADA/disability attorney. You should be able to sue your former employee for violating ADA law (which is a Federal law, with similar laws in each state). Apply for disability post haste and forthwith. When you go before a disability judge, be sure to keep your hands on the desk in front of you so that s/he will see the deformities. It may take 2 or 3 “tries” before you can get on disability. Once you are on disability, you will have Medicaid and some small to moderate income. I will keep you in my prayers!

  • Kat
    4 years ago

    You need to find a better rheumatologist. Also, your job terminating you due to health issues is illegal, you could sue them. I’m so sorry you have no health insurance, that’s got to make it really hard – but with Obamacare now have you looked for something affordable? I’d look for a new rheum anyway, you need a diagnosis and treatment.

  • Pat
    4 years ago

    If i could jump up and down with excitement, I would. Your symptoms and mine are very similar but my triggers are stress, mopping the floor (I know, I know…. But it’s something to do with the repetitive motion, even though sweeping doesn’t cause pain), any sort of infection and sitting still for more than 5 minutes at a time. That last one is hard, damned if I do and damned if I don’t. My husband has DDD and you would think he would understand… but, nooo… He can still type and fall asleep without 5 different medications, along with spending a great deal of time every day driving, which puts me flat on my back popping Tramadol like they are tictacs. Which brings me to the pills, I know eventually I won’t be able to do much at all, so why not give me something that will allow me to be productive, not something that just mutes the pain while I’m not moving? Some days I don’t need any at all, but I feel my fingers and feet beginning to twist no matter what and I’m sick and tired of being sick and tired.

  • shelly
    4 years ago

    Well at least you have test to back up your symptoms.
    I’ve had issues with my back since I was a teen .ddd was what the chiropractors said..as I got older back got worse herniated 2 discs so far all the rest bulging .Now at 42 I have fingers of an 80 year old with ra morning stiffness every joint has errosion was told last year I needed a hip replacement. Cronic headaches cronic fatigue and with in a months time couldn’t bend my wrist backward.Pain , pain ,and more pain .But all the rheumatologist has told me is to take Aleve. Why because I never test possitive for Ra But have all the symptoms. I have 4 boys and it very hard to care for them when you cant move .I don’t know where to turn why can’t they find out what is wrong with me.I woukd like to be able to hold my grandchildren one day..not yet but one day:)
    Anyone else not test possitive ? If so what treatments ? Help

  • Rose de Kook
    4 years ago

    Hello everyone.
    I know we get fatigued – but some days it’s all the time!!
    I am currently on Actemra infusions x mthly. I’ve just had my 4th infusion so it’s blood tests tomorrow for my 12 week review. I think I’m doing better on this but am still tired and hard to motivate myself in the mornings. Brain fog! Some days quite clear others feel like I’m a candidate for aged care! Yes I’m 56 not 86. I still work 4 days a week. Sometimes I just have to have a day off – feel my depression biting @ my heels.
    Hopefully we all get something that works for us. Our bodies are different and with autoimmune diseases symptoms are different. Therefore no easy quick fix.
    Take care everyone.
    Rose.

  • Jane Burbach
    4 years ago

    Also, I am not a doctor but the use of ibuprofen over years, even following dosage guidelines, damaged my kidneys and I developed high blood pressure and occasional pain in my right kidney. The high blood pressure is now treated. I cannot take ibuprofen or Celebrex and other NSAIDs and am limited to aspirin and Tylenol.

    I hope you will find a doctor who will diagnose and treat you.

  • Jane Burbach
    4 years ago

    Virginia,

    Your story sounds very similar to mine. My first RA/autoimmune symptoms showed at age 19 in my feet, which xrays now show to have significant erosions. However, I do not have a family history of it, but do wonder about my maternal grandmother, who was significantly affected by something and took herself to Mayo Clinic and another similar clinic in Texas. Don’t know if they ever tested her for autoimmune.

    Then at age 23 in my neck after a car accident.

    Then at age 31 after my second son was born and I experienced significant disability though I kept working but took several months off.

    I went to the doctor each time. At 31, the GP I saw said we might find later than I have fibromyalgia. He did not run any labs whatsoever. That flare lasted for a couple of years. People thought I was depressed due to life issues that were happening, etc.

    I lived with several significant flares since age 31 and was finally tested and diagnosed at age 47 when I became unable to work again and finally showed inflammation in my fingers and wrists. It has been very frustrating to me and has affected my life significantly.

    When I was finally tested my RF was 242, along with high results in the other markers. My ANA was positive but on the low end.

    Ultimately, I was relieved for a diagnosis, which explained so much.

    I just encourage you to find another doctor who will start you on some course of medication and treatment. Currently I take methotrexate injections and plaquenil and am doing better. Not 100% but better.

    Wishing you well.

    Jane

  • Carolyn Haney
    4 years ago

    I never really understood what it would be like have auto immune diseases but I know one thing I hate it! I’m so glad I’m able to read other people’s stories so I know I’m not alone or going off the deep end

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