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@JFBMight The rheumatologist Be willing to let you try plaquenil for a few months (it takes that long to work) or a short course of steroids to see if it helps? If it does it should indicate an autoimmune disease and then they might treat for sero negative autoimmune disease. Some Drs will do this, many won’t.

@JFBLyme and autoimmune diseases are differential diagnoses. Have you been checked by a rheumatologist for any autoimmune diseases? I was misdiagnosed as having Lyme and was treated with a load of antibiotics that did nothing when in fact I had an autoimmune disease (or a few). Once I started treatment for the autoimmune disease I improved and the low grade fevers are a rare sign of a flare now. Just FYI you need a really good rheumatologist that won’t say you don’t have it based off the lab work alone which is what most do. After many years of suspecting I had autoimmune disease and many ANA tests the third one in 18 months after I developed full blown dysautonomia came up positive. Keep pushing for the testing if there’s no improvement with the Lyme treatment.

Thanks to everyone posting about this. I had my first Moderna vaccine last month and the second is this coming Sunday. I had increased fatigue and a sore arm for a few days. I increased my supplements per Dr Klimas before the first shot. I spoke to my cardiology NP this week and asked about her dysautonomia patients responses to Covid and the vaccine. This is a clinic that treats 300+ dysautonomia patients and she said that none of the patients that had had Covid have returned to baseline and that she only had one person question a flare induced by the vaccine.

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 for anti anxiety meds (I rarely use them) helpful. I can’t do anything that involves conscious breathing, it makes the anxiety worse. I read somewhere that the excess norepinephrine itself and the constant activation of the SNS cause feelings that mimic/cause anxiety so which came first? I found the book How To Be Sick by Toni Bernhardt helpful. She discusses the impermanence of everything in life which I try to remind myself of when I get anxious. This too shall pass. I distract myself in whatever way I can tolerate on the day—reading, TV, playing with the dogs, sitting in the yard, calling or messaging a friend etc. I am exploring exactly this and what to do about it with a new therapist who was a pediatric cardiologist and understands the pathophysiology of dysautonomia.

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 :^(

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.

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

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.

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.

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 effect? I have no idea but certainly possible. The higher doses of 2-3mg have increased insomnia which is a known side effect. Can you find a compounding pharmacy?

@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 found that Drs affiliated with academic medical centers are sometimes more curious about we weird ones. Just a thought. Please let us know how you do. Just FYI it took me almost a year to see improvement from plaquenil but I titrated up extremely slowly so don’t expect quick results.

@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.

@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.

@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 LDN . So far my pain is less but it’s too soon to really tell as I am ramping up the dose. LDN is causing insomnia but I get that if you look at me wrong anyway and it’s supposed to help with sleep after the adjustment period. Good luck with it @dizzytizzy

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 finding a med that helps me sleep. Flash forward 6 years and many, many meds and setbacks later and I am a normal weight, exercise most days and while still housebound, even before the pandemic, I don’t pray to die every night. I have made peace with my body and the extremely limited life I now have. It’s all down to acceptance and being extremely stubborn. I just won’t willingly go back to that state again. Most importantly I learned my limits and usually pace myself but it’s always a moving target. I am very lucky that I have great Drs who fought for SCIG, and are open to new medications and extremely knowledgeable in dys. Specialists are definitely worth getting to. I won SSDI in 6 weeks on first application without a lawyer if that gives you an idea of my condition. This video has extremely useful advice https://vimeo.com/434576980 on getting SSDI with dysautonomia. I was honest in my answers and focused on “activities of daily living”. I was, and am, completely dependent on my husband. Pistol is correct, the decision is very much based on what your Drs put in your chart.

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.

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.

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 cuddling with my husband or dogs. I will very occasionally take a quarter tablet of alprazolam which also helps.

Oh @PistolI am sorry that you are flaring. I also get weakness when I flare badly enough. I have been flaring lately, not just dys but also my autoimmune disease and have had a lot of weakness, joint pain etc. I think it’s partly the weather that’s doing it. Hang in there. Sending good thoughts your way.

I should probably add that once I became eligible for Medicare (disabled) getting meds approved by the PBM was much easier. I assume that’s because Medicare pays for much of it.

I have used such studies, especially double blind ones successfully to get my pharmacy benefits manager to cover drugs, I think this one the first time I was on it. My neurologist’s office is great at supporting treatments and justifying them which really helps. I tried it again recently but went off of it because it made my palpitations much worse so like everything with us it helps some but not others. I wonder if it’s lowering norepi and I am already on an alpha 2 blocker the combination was too much? Thank you for posting this.

@dancerI believe that in the UK you can rent Parasym to try it out before buying. As far as I know no prescription is required.

Thank you for posting this. I found the article and the DI conference presentations very interesting and hopeful. I was going to get a Parasym device https://www.parasym.co/parasym-device-transcutaneous-vagus-nerve-stimulation.html the next time my husband went to the UK (they don’t ship to the US) but covid hit 2 weeks before his trip. I did buy this in the US https://vagus.net/ but it only stays on for 15 minutes at a time and you can’t control output much and it irritates my skin. It might help a bit but I can’t wear it long enough to really know. I do know there has been discussion on here about vagus nerve stimulation before.

I am so sorry that you went through this and are now dealing with a severe flare. How frightening for all of you. I sincerely hope that you recover from the flare as quickly as possible. My sincere thanks for telling us about your experience.

Hi all. I know all about doing ortho vitals (immediately on standing, after 1,3,5,10 minutes after standing) and have a great dysautonomia team of Drs and NPs but this is such a basic question I thought I would ask here. How long after sitting should we take them? I have read 5 minutes for healthy folks but my BP drops 10-20 points between sitting for 5 minutes and 10 minutes. I like the numbers after 10 minutes much more ;^) so I tend to use those. I tend to have hypertension. TIA.