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About KiminOrlando

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  1. Yes. I started taking melatonin and it helped at night. Oddly, it doesn't make me tired. Thinking of trying it during the day too.
  2. My doctor had never seen anything like it. I had a doppler study to check blood flow, but it was fine. Of course, it was done laying down.
  3. I am also a slow healer. I had surgery on my ankle and the incision pulled open, maybe because of swelling from blood pooling. The incision bruised. It has been 4 years and still looks bruised. I think it has something to do with POTS, but I don't know what it is. I was supposed to do the other ankle, but that surgeon, a podiatrist, declined to do it.
  4. @Jwarrior77 At this time we have no further information. The doctor stopped that IV Biologic because I had a bad reaction. We are just now getting ready to start another RA med. My dysautonomia is worse when I am off my autoimmune meds. Nobody has retested my Free Light Chains.
  5. I have gastroparesis but it took years before they would do the test. I told them I would throw up when I bent over to pick something up. I would eat dinner, then throw it up the next morning. It isn't supposed to still be there that long. I am on medication for it and it changed my life. Before meds, I wouldn't leave the house because I never knew when it would happen. I went to 4 gastroenterologists before I found one to take me seriously.
  6. I think in women it can be difficult to see everything because of breast tissue. Not sure if that is an issue here.
  7. I sway. I don't know why and nobody seems worried about it. I wish it would stop.
  8. I agree with Lily. I get a bone density scan every two years to make sure nothing bad is going on. They monitor me, but let me stay on the med. If things start to go wrong with my bones, then they would reassess.
  9. I've been on florinef for 15 years. I think some doctors overreact. My bone density scans are within range for my age group... the low side of normal. Curious about other people. I'm on another med for something else that people panic about, but my doctors said it was reformulated and it isn't an issue anymore. This seems to be common.
  10. I don't have it that bad, but I took Melatonin to help me sleep. Didn't help me sleep but it helped the shaky, sweaty, feeling like my whole body is vibrating and I'm going to jump out of my skin but I'm too exhausted to deal with it all feeling. Dumb luck it seems to help and I don't know how long it will last. Hope you find something.
  11. Yes. It turned out in addition to all this mess, I had pernicious anemia. It would take all of my energy to walk from the couch to the kitchen table (20 ft). After that I just wanted to collapse and sleep instead of eat. It was a very bad time in my life. Hopefully they do full blood counts and notice what is going on. I went for years with untreated pernicious anemia even though it was clearly in my bloodwork. Low blood pressure is also very exhausting as is tachycardia. When my resting HR was in the 120s, I was too tired to do anything. Keep talking to your doctors. It can get better.
  12. Boredom? You can call my insurance company and try to get them to pay my claims, then call the doctor to get them to update the claim. Then call the pharmacy to see if they have been able to get my drug yet. I'm flipping exhausted. I'm joking. That isn't a criticism.
  13. Good for you for advocating for yourself. Hope you find a better fit.
  14. I have tried Melatonin the last two nights. I'm hyperPOTS and normally wake up with my body vibrating and I randomly sweat all night. Both nights none of that happened. I woke up with my body still and relaxed. It was so calm and peaceful like I have never experienced. Has this happened to anyone else? Is there any medical reason this would happen? It doesn't make sense to me.
  15. Yes, but I see your concern if your PCP wants to chalk your POTS up to anxiety, then you want him out of the loop, unfortunately. I would not sign it and talk to your therapist. Tell them you are concerned it will impact treatment of your medical condition because uninformed doctors like to think of it as a psychological condition instead of medical. Tell him you understand that normally people do coordinate with the PCP. Maybe he will research dysautonomia. Maybe being honest will make him an ally.
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