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Lunarr

487d

It seems I may have been misdiagnosed and therefore incorrectly treated for dysautonomia for the last 4 years, the new suspect (chronic fatigue syndrome) makes a lot more sense and the potential of it has answered a lot of unknowns and questions regarding my health and why I am such an unusual dysautonomic patient. I think because of my young age doctors in the past haven't brought CFS up but it can affect all ages, even children, so maybe my local doctors just suck lol I'll be returning to Mayo in a few weeks for an evaluation at their chronic fatigue clinic and am feeling pretty good about it, I've never had a doctor listen to me so thoroughly and openly before without dismissal. Highly recommend their care if it's an option for you! I'm feeling a little lost knowing the illness I've learned so much about and have attatched to my identity may not be accurate. I know that it was, for all I knew at the time, and that CFS feels like a much better fit, but it's strange. I'm elated but also in mourning a bit. Very strange feeling. There is, of course, the potential of me having both but right now I don't know, my symptoms fit the bill of both illnesses, so I'll just have to wait and see I suppose

Top reply
    • 55isMe

      181d

      @Lunarr thank you. PEM and venn diagram were very useful new terms to me. For me, my system malfunctions have been triggered by breast cancer. The first was 32 years ago. Not able to work (or function much) for 3 years. Tremor so extreme that couldnt write, drink from open cup, eat with spoon, even read playing cards. Migraines 2 weeks of each month+. Unable to comprehend sentences, written or verbal. Sleeping 16 hours a day. Thrombocytopenia. Imitrex became available and within a year of taking it, much was calmed down. The rest (including the Thrombocytopenia) went away with first chemo dose. Now, preceding 2nd breast cancer, sudden onset POTS (170+bom and High blood pressure 165 to 180 diastolic within 3 minutes). From before, i expected Post-cancer surgery, to provide immediate symptom improvement. It didnt, but 2 year after. It has been getting progressively better. Exercise intolerance is still at a near high.

    • 55isMe

      182d

      I'm no expert. So far, my findings on Chronic Fatigue, autoimmune diseases, dysautonomia is that the medical world doesnt know much about them. The lines seem to blend so much that these are so intertwined, i dont think it makes sense thinking of any of them independently. I gave up on a diagnosis. I just didnt want to spend more money finding an answer to symptoms that keep morphing. I am focusing on treating the current symptoms. And, it is working. My POTS (NO diagnosis because i didnt spend the extra $6500 for the tilt table test and risk snowballing in my condition) my POTS went from not being able to stand 5 minutes and exceeding 200bpm to this week i had 3 days were i stayed under 120bpm and stood for about 12 minutes in a row.

      • Lunarr

        182d

        @55isMe The variability of symptoms is definitely frustrating, I hear you! For us and doctors who are trying to treat us (or gaslight us sadly). Diagnosis was extremely important to me because I had never heard of ME/CFS before this visit and it made perfect sense once I was educated on it. I have more ME than dysautonomia symptoms at this point bc the later is being managed by medication. I had also been prescribed treatments that were harmful to me by local doctors who didn't know about the disease either - I stopped those immediately. I now hold a diagnosis of ME/CFS and borderline POTS, and for me the difference between the two are extremely important (PEM in particular but also energy production issues being important hallmarks of ME). The venn diagram of my symptoms has some overlap but also many important differences. I do agree the medical world has lots to work on when it comes to these types of illnesses. I'm glad your current treatment plan is helping you!

        • 55isMe

          181d

          @Lunarr thank you. PEM and venn diagram were very useful new terms to me. For me, my system malfunctions have been triggered by breast cancer. The first was 32 years ago. Not able to work (or function much) for 3 years. Tremor so extreme that couldnt write, drink from open cup, eat with spoon, even read playing cards. Migraines 2 weeks of each month+. Unable to comprehend sentences, written or verbal. Sleeping 16 hours a day. Thrombocytopenia. Imitrex became available and within a year of taking it, much was calmed down. The rest (including the Thrombocytopenia) went away with first chemo dose. Now, preceding 2nd breast cancer, sudden onset POTS (170+bom and High blood pressure 165 to 180 diastolic within 3 minutes). From before, i expected Post-cancer surgery, to provide immediate symptom improvement. It didnt, but 2 year after. It has been getting progressively better. Exercise intolerance is still at a near high.

    • Letter

      187d

      I'm sorry to hear about the turmoil you're going through, and am happy for you that there seems to be more answers as well. My journey jumped about like this a bit too. I remember finding out I was low in vitamin d, then that I had Lyme's and eventually ME. Ten years later I only now feel some relief. But the more we help each other the easier it will become.

☝ 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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