I’ve been diagnosed, so why do I feel worse?

Home ThinkSpace Week 4: Pain Management I’ve been diagnosed, so why do I feel worse?

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  • Managing pain of any kind doesn’t end once the pain’s source has been diagnosed. To my friends and family, learning the headaches were migraine was the end. For me it was the gateway to a new, likely permanent way of looking at my life. I had to learn what kind of migraine I suffered from, that the frequency, intensity, and headache type might change at any time and I would never have a definitive reason why. I had to start testing medications, supplements, and lifestyle changes that might decrease, increase or have no impact at all on the headaches – and, as all the providers I met with told me, their impact might not hold steady over time – just like my diagnosis.

    Figuring out which kind of migraine I have, learning that it could change at basically any time, and the types of medication, supplements, and lifestyle changes that might help or hurt it continues to be a twisted series of trial and error – especially with the admission of all the medical professionals that what works today might not work in the future, or even tomorrow, just like my diagnosis.

    How has diagnosis changed or not changed your pain and your pain management?

    #painispainevenwithaname #whatsinaname #howmanykindsofmigrainearethere #diagnosisisthebeginning

    Samantha Kaplan
  • I would like to respond specifically to your question, but there is the proverbial other side of the coin here. I have no real diagnosis, just speculation. Being diagnosed would be a tremendous step forward for me. One specialist told me I would indeed need to get worse before I could expect a diagnosis. That was over a year and a half ago. Meanwhile I enjoy all my existing conditions and problems as new ones manifest. To compliment other posts I have made here at BLP, often body listening comes down to how adept I am at at simply ignoring certain aspects. Or prioritizing one voice as I mollify another. Sometimes the critical mass of the voices of many different pains simply crushes me. I cope by “faking happy” which in itself is not healthy and contributes to the overall malaise. I not only hope to find a diagnosis, but yearn for the self identification that a diagnosis would provide.

    Zepplin
    • For me, part of the problem is finding that causal pathway – is this pain from the same chronic condition or something new, because it feels a little bit different, for instance tingly, not spiky this time round. #painpathway

      marygrace
  • Diagnosis of migraine after a decade of suffering helped initially. knew it was migraine, but I couldn’t get treatment until the doctors also agreed. But that was followed by decades of failed efforts — all sorts of drugs, everything in the book really and everything new that came down from the drug manufacturers, sleep studies, brain scans, MRIs, allergy panels, psychotherapy, botox, food eliminations, and more. Never was a cause successfully identified and some doctors didn’t even want to try to do that. I recently finally got significant relief working with a doctor on the mind-body connection of pain. I don’t know if it’s allowed to recommend specific practitioners here, but I will if it’s permitted. #migraine #failure

    Midan
    • Midan, it is entirely your choice what you share!

      I think you also bring up a very interesting part of the journey to diagnosis – what happens when the patient knows before the practitioner? The knowledge is in the sufferer, but to access treatment a gatekeeper has to agree.

      #whoknewfirst

      Samantha Kaplan
      • And SO VERY FRUSTRATING!!!! When I finally quit going to school and got a “real” job, I had a doctor who was very accommodating. He was wonderful. If I thought I should be checked for something, he was usually willing to sign off on the necessary tests. He has since retired. My new Primary Care Physician is also pretty good, though I haven’t really had a reason to push for anything yet. She’s been generally responsive to my concerns, though, so fingers crossed.

        Finding the right caregiver can be a challenge. I’ve posted on another thread the website of the doctor I’ve seen most recently and I’ll post it again here in case someone doesn’t go to that thread but would find the website worthwhile  http://www.unlearnyourpain.com/

         

        #migraine #doctors #whoknewfirst #caregivers

        Midan

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