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About p8d

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  1. I am so sorry that you are struggling with this. I am 59 years old and have been in full blown dysautonomia for 6.5 years. Like you, I find it increasingly difficult to deal with stressful things as I get older and have noticed that my healthy family/friends also do so. Maybe it’s part of aging to some degree? I have hyper POTS, OH, extremely labile blood pressure (supine hypertension, OH), autoimmune disease etc. This past year has been a very anxious one for me. I find an alpha blocker for the excess norepinephrine, exercise, nature, hugs, dogs, weighted blankets, just having a prescription
  2. Anybody else with autoimmune disease get a flare of that and dysautonomia from sunshine? We finally had some lovely spring weather and sunshine the other day and I spent a few hours outside and everything started flaring the next day. Fatigue, joint pain, low BP, high HR, malaise etc. I know it can cause lupus and RA to flare but I am not aware of it causing POTS to flare. I am also not aware of it causing me to flare :^(
  3. I take 2.5mg/day but it definitely has an adjustment period. I had bad palpitations for several weeks and the higher the dose the worse it is. It definitely helps my HR.
  4. While this is a very small study it is good news for those of us with autoimmune diseases https://creakyjoints.org/living-with-arthritis/covid-19-vaccine-inflammatory-disease-antibodies-study/?utm_source=GHLF+COVID-19+Support+Program&utm_campaign=17d672e5f8-PSP_realtime_59&utm_medium=email&utm_term=0_e0b05b1451-17d672e5f8-233526025
  5. I have some anhidrosis and SFN and had the flu (mild, I had had the vaccination) a couple of years ago and the symptoms were all there, achy, fatigue, fever but I don’t recall sweating being an issue. I do sweat in some places so I figure I will sweat there if I need to.
  6. Keep getting ANA tests if you can. I was tested roughly every 5 years for suspected AI issues and they were always negative. After I developed dysautonomia I was tested 3 times in 18 months before one came up positive. The tests really aren’t terribly reliable and that’s why a good rheumatologist will treat based on symptoms.
  7. I, too, tested negative for MCAS but take quercertin and singular daily. I recently started LDN for pain (from a compounding pharmacy) at 1mg the first week and working up by 1mg/week to 4mg. On the advice of the pharmacist I had to stop it for a few days before my first vaccine and then stayed off it for 4 days and restarted at 1mg/day for a couple of days yesterday. I will increase every few days back to 3mg/day which is where I was before the shot. I have not noticed any difference in my dys symptoms but my inflammatory arthritis, migraines and a trigger finger have improved. Cause and effe
  8. @dizzytizzy The first rheumatologist I saw said everything was fine with my labs (there was some weird results that he didn’t interpret as abnormal) but did offer me steroids. I refused him but my then PCP offered a medrol dose pack that really helped. 24 months later when an ANA came up positive with autoantibodies my PCP recommended a different rheumatologist who is wonderful and treats based on symptoms not just labs. Can you ask this wonderful dermatologist for a referral? She might know a sensible one. The dermatographia sounds like MCAS. Maybe she can recommend an immunologist? I have f
  9. @PistolAny and everything Covid as a topic. Experience about people who have had it, vaccine info/reactions, mitigation strategies for the vaccine etc. I think we are all interested in this.
  10. @Sushi Thank you for posting Dr Klimas’s advice. May I ask how severe your MCAS is? I have increased some of my supplements and plan to take Zyrtec anyway but I think I have a relatively mild form of it.
  11. @Pistol that’s wonderful! I am happy for you. I have always thought that dysautonomia is an autoimmune disease, it is wonderful to see so much research starting to show it. After several months on plaquenil for post POTS diagnosed AI disease it was the first drug to help with fatigue/joint pain/malaise. I did have significant diarrhea for a couple of years but stuck with it. SCIG helps even more and I recently started LDN for the neuro inflammation and pain, joint and migraines, that the other two don’t help. I still get flares of quite bad joint pain and fatigue which is why we started L
  12. I am so sorry that you are going through this. I tried powering through in the beginning and ended up very, very much worse. When I hit the point where I prayed to die every single night and my body wouldn’t (I was extremely ill, just out of hospital with severe malnutrition) I finally *decided* that I had to do everything within my power to get better and never go backwards again. That meant getting home physical therapy for 2 years followed by 2 years in person, trying every drug available, compression stockings every waking moment, 3 liters of oral rehydration solution and after 18 months f
  13. I was just prescribed LDN for inflammatory arthritis/pain/migraines/autoimmune disease and dysautonomia (autoantibodies to alpha a-1 receptors). I likely have a low level of MCAS but not officially diagnosed with it. I am wondering if anyone has any advice on starting/side effects of LDN? I am starting with 1mg daily and increasing to up to 4mg over several weeks if needed. I am not on Facebook and know to expect vivid dreams at first but what else? TIA.
  14. I have standing orders for PRN IV fluids from my neurologist and when I showed up at an urgent care clinic to get them the PA flat out refused to give them to me. He knew nothing about dysautonomia and said that the risk of infection was too great. This was after 5 days of diarrhea and I weighed 88 pounds. I was hospitalized a week later. If we have the orders they should not second guess our specialists! After that experience I simply won’t call for paramedics or go to an ER unless I am in complete fear for my life.
  15. I can’t do any type of breathing exercises except for maybe two breaths or a few minutes without getting very symptomatic. Mindfulness meditation, no way—I get tachy and anxiety and I have no idea what my BP does. I have a HRV device that you breathe to a Mandela and I do really well for about 3-5 minutes then all h*ell breaks loose, not only in HRV but how I feel so it’s definitely physiological because I can see it in the device. I think for some of us this causes sympathetic overdrive symptoms. I tend to do better lying down or sitting in my recliner and distracting myself with a book or cu
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