JustRachelle

42d

Being your own advocate means that you may have to pay out of pocket for certain testing to be done if your doctor is refusing to order test for you. I’ve asked my neurologist several times how can she rule out conditions that require both brain and spine MRI’s when she refusing to give me orders for a spine MRI. She won’t order further testing such as spinal taps etc… It just doesn’t make sense to me. Which means now I have to go out of pocket for a spine MRI for my own peace of mind and to advocate for myself. My rheumatologist is the same way!

Especially with having all of these symptoms!

Fibromyalgia (FM)

Acute Pain in Thoracic Spine

Migraine

Generalized pain

Edema & Anasarca

View all
  • JustRachelle

    42d

    ** I’ve had a fibromyalgia diagnosis for 8 years but I feel as though I shouldn’t have a fibromyalgia diagnosis until EVERY POSSIBLE thing has been COMPLETELY ruled out.. with all testing required!**

  • Overwhelmed

    40d

    I agree, once you get the fibromyalgia diagnosis it’s used as a blanket culprit for everything that happens to you afterwards. All new symptoms, as well as worsening, are ignored and not looked at as if it could be something else. I had cancer and obvious swelling on my neck but was told it’s just a swollen salivary gland and I should put a hot compress on it. The swelling was in the middle of the neck and those glands are right under your jaw and kinda part of it. I questioned my diagnosis for over a decade. It just doesn’t sit right. And recently I started PT with a totally new people in town and first feedback I got was that they can help me recover the two decade long chronic pain from an injury and that my body doesn’t represent as a fibro body. And after a month of therapy, I am starting to feel different. People, go and search for anyone that may be of help to you. Advocate for yourself everywhere you go. Question every decision providers make as to why they think it is what it is and why the approach they’re taking.

    • ReadieFreddie

      34d

      I’ve had the same swelling issue … did you get bloodwork done ? I got general bloodwork done and was Told there was nothing “significant” even though some things were definitely off…

      • Overwhelmed

        34d

        my tsh was normal all the way but they didn’t check my thyroid antibodies. Eventually, they ordered an ultrasound and found nodules on the thyroid, then biopsy confirmed cancer. Push for more testing if you feel like there is something there until you have a clear answer that it is or isn’t concerning. Best wishes

      • dolphinblues

        34d

        I hate that phrase, "nothing significant". Like, it could be something, but it's not concerning enough for me to figure it out for you. So I will let you continue to suffer in pain with no answers to your questions and concerns. Umm.. ok. Geez. Thanks for nothing, Dr.

  • whicheveroneiam

    38d

    I’ve heard some people have success when they ask a doctor to make a specific note in your file that they refused a test with their reasoning, then the doctor finally caves and orders it because they’d rather not look bad I personally haven’t don’t it but I guess it does. It’s worked for me to have backup, usually my mom goes with me to appointments and asks a lot of the why not? questions. I guess it’s harder to say no to two people than one, but not always :/

    • JustRachelle

      38d

      that’s what I plan to do … if they refuse I’ll ask them to make a note of it in my file and then try a new doctor.

    • dolphinblues

      34d

      also, regularly check your records for accuracy. I had a Dr that made notes incorrectly about my complaints and overall issues. I did not find out until I changed insurance and switched Drs, which made it nearly impossible to correct. Not only because he wasnt my Dr anyone, but because too much time lapsed. The main thing that was incorrect: he would ask about the pain in a specific area (ie back, neck, leg, etc) that day, so I would answer for only that part of my body, not overall pain levels. He would enter into my chart " patient denies any pain or claims to have mild/moderate pain." Indicating he asked about overall pain, not a specific area of pain. Because of this, it took an additional 10 years to get Drs to take me seriously.

      • Teardrops

        34d

        adding on this. Check medications as well. I have medications that I got at the pharmacy that maybe was for a short time period of use (like 2 pills to take before a neck injection procedure). I am not always on that dosage. I take a list with me but the nurse or whomever doesn’t always update it or correct it Frustrating as well.

  • Teardrops

    34d

    I believe in advocating for oneself. But sometimes some things are beyond what is needed. There are reasons some doctors don’t order the tests you want. 1. It’s costly. 2. Doesn’t help in diagnosing an illness 3. So its a waste of time. Everything is ruled out??? What do you think you need tested for to make sure you’re diagnosed with fibromyalgia is an acceptable diagnosis? I haven’t ever really researched other tests needed done to rule out fibromyalgia…. But I think a MRI of the brain and spine and a spinal tap are not necessary tests. I only have had a fibromyalgia diagnosis for 20 + years. Never had a spinal tap, I had some imaging done of my back and head. Back due to having severe back pain which turned out to be a pinched nerve or DDD. The head/brain to check for otter reasons that maybe causing the migraines I get daily. I guess I am cheap and would rather spend money on other things than to have expensive diagnostic tests that will likely come back normal. I understand advocating for yourself. And if you really think these tests are necessary and will give you peace of mind, then proceed to get them done. I advocated for myself in the hospital when the nurse would bring medications to take and they varied from the number of pills from the last time I had them such as 1 or 2. I asked why did the last time I got one and now I have two of that med. Want to wish you luck in your health journey and finding the right doctors and specialists who can heal you or at least make you ailments less painful to live with 😊

    • JustRachelle

      34d

      it’s not for fibromyalgia.. it’s not to rule out fibromyalgia! It’s to rule out other things that SHOULD be ruled out before a fibromyalgia diagnosis is even given… there are a number of things that should be ruled out before hand.. that’s how it’s suppose to diagnosed.. rule out all other conditions and then the physical exam… not looking at someone and saying “your young so it’s probably this… yes this what you have”

    • JustRachelle

      34d

      however we were supposed to be ruling out MS .. and to do that those test I mentioned are required to rule it out.

      • Teardrops

        34d

        hope you find the answers to your questions. Hope a doctor will order those tests so you don’t have to pay out of pocket as that can get quite expensive.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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