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I was tested every five or so years for thirty years before my ANA came up positive, including three times in eighteen months. Keep pushing for the test and maybe see a rheumatologist. A good rheumatologist will treat based on symptoms not tests. There’s a lot of recent literature showing that Dysautonomia and autoimmune disease is possibly linked.

It sounds like one. Have you had your catecholamines checked? Sitting and standing for ten minutes each? There’s also a urine test. Are you seeing a dys specialist? In my case I had evidence of adregernic involvement when I got tested but it’s definitely worsened over time. There are drugs to help, clonidine, methyldopa and a few others. Alpha 2 agonists. Betas won’t touch the norepinephrine dumps but will help the tachycardia.

Has anyone checked anti phospholipid syndrome? See https://www.dysautonomiainternational.org/blog/wordpress/what-dysautonomia-patients-should-know-about-antiphospholipid-syndrome/. There also was presentation at the last Dysautonomia International annual meeting about it I think. There’s a video somewhere. Sorry I cannot be more helpful.

Up, autoimmune should be checked. I get low grade fevers during flares of my undifferentiated connective tissue disease along with increased fatigue and joint pain.

I get lots of headaches but I never tested to see if they go away lying down. I get supine hypertension so don’t lay down unless my BP is lower or bedtime. I will try it though. I didn’t vote because of this, sorry.

I love my Concept2! I alternate between an upright stationary bike and rowing machine at home. At PT I sometimes do a treadmill but the max I have lasted is 7 minutes so far. I am thinking of getting one for at home. I started at PT when I was really, really bad, in a water treadmill. It was really helpful along with the strength training. I, too, doubt I can get near my desired HR but I do do intermittent high intensity all out for 30-60 seconds then go back to base pace which isn’t too easy.

My legs feel heavy, sort of almost a bit painful and my feet/shins go red to purple. I also have livedo reticularis in both legs. BP goes down, HR goes up. It’s especially noticeable after a shower.

I second the magnesium! I swear if I am in the same room as it I get a bout.

If you are on beta blockers you need to go by perceived difficulty rather than heart rate. I do a modified Levine protocol that’s tweaked by my PT. Single leg raises while holding something will strengthen calves. Sitting leg raises with ankle weights, bands around ankles and moving one foot back then the other side and then off to the side are some I do. Getting in a squat with your back against the wall and holding for several beats is one I do while doing bicep curls. Just remember to pace yourself and listen to your body if you are fatigued the next day.

I have had it all my life, sometimes terribly, sometimes better. Mestinon and Midodrin caused it really badly so those are completely off the table. Also hydroxychloroquine for my autoimmune disease. After everything else was ruled out gastroenterologist said if Imodium helped keep me take the meds I need (hydroxy) just take it. I don’t recommend this unless your Dr tells you it’s ok. Mine was so bad I was hospitalized weighing 84# so it’s definitely something to treat if you are losing weight. Finding a cause is hard. I had lots of tests, kept detailed food/meds/supplements diaries for years.

I likely have it. I do know a couple of friends that have heart disease and credit the machine with helping them, in one case significantly. His ventricle actually is getting smaller.

I get it on my ears as well as fingers and toes. Part of my ear will go bright red or blue. It gets the Drs all excited when they see it. I also am hyperadregenic.

I was given one to rule out MS and chiari. Both were negative. I hope the disability goes through. It’s an awful game.

It would meet the diagnosis of OI and pots at the center where I had mine done. I was diagnosed with both. Pistol you made me laugh with this terribly accurate statement! “ I think the TTT is one of the most sadistic medical test EVER!!!!” I lasted 16 minutes and will never do another one unless absolutely necessary. It was so awful. Thanks for the laugh!

I have it and I think many do. There has been discussions about it on this forum about it before. It might be worth doing a search.

If your Dr doesn’t believe that pots can cause diarrhea show the next one this https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/symptoms-causes/syc-20369829 maybe they will believe Mayo!

I am sorry @dancer65I cannot imagine how frustrating that would be. We try so hard and make a bit or a lot of progress and then to lose that must be very disappointing. All I can say is when you can get back to what you can. You will get there!

I find this “She was even saying that rapid gastric emptying is not possible with POTS and debunking things my previous GI Prof had diagnosed - Prof Aziz” extremely disturbing. Many of us have rapid gastric emptying. I almost died from it so it’s nothing to blow off. Autoimmune diseases are well known for inability to tolerate nightshades. In my case my joints hurt terribly the next day. Have you ever been evaluated for autoimmune disease? Many of us have co-morbid autoimmune issues.

I agree with the others. I also suggest a new, knowledgeable gastroenterologist. Can you ask your pots Dr for a referral? They might know of one who is familiar with pots. What about a functional medicine Dr? They are often more used to dealing with food sensitivities. Can you see an allergist/immunologist about mast cell? I found a a good primary care Dr and allergist on a local pots Facebook page. I just asked for referrals and people with pots replied.

Absolutely agree on the non-live virus. I had forgotten that but my neurologist and rheumatologist both require that for me. I even make them show me the vial to be sure.

My ANS Dr tells me to get one every year. I have had one the past three years, sore arm but that’s all. Maybe fatigue but I am always fatigued so who knows? Much better than getting the flu.

It sounds like you are doing well @WinterSownand that’s wonderful. Good Drs are worth their weight in gold. I applaud you for telling him about the Dr that didn’t take you seriously. I saw something like 10 Drs seeking a diagnosis and all except my PCP blew me off. My PCP believed me because he knew me before and I was so very ill, not that any labs showed it. Like Pistol I complained to a facility/group about one exceptionally bad encounter and had several people from there call me about it, including the Dr in charge of the department. I don’t know the outcome but it was validating.

One thing that helps my fatigue and doesn’t mess with BP or HR is modafinil. I don’t take it every day because it seems to lose effectiveness but it helps when I need it. I have bad crashes when it wears off so take a half pill in the morning and then another half around noon.

@blizzard2014 my BP goes up as the day goes on too. Cardiologist says this is normal, just not as high as mine goes. Unfortunately, mine doesn’t lower in the evening and I get supine hypertension so I take a clonidine about an hour before I go to bed to read. I only take a 1/4 tablet at a time, around 10am (BP is too low before this), 1pm, 5pm and 8 pm. I am hyper sensitive to meds and fluids. My BP will rise 10-30 systolic in about 15 minutes after drinking 8-16oz. I also blood pool quite a bit so have to have enough fluid to keep hr under control but not too much to raise BP too much. I rarely have the balance right for more than a couple of hours on any given day. Neurologist told me early on we put both the gas and brake on at the same time and try to keep going forward. A fairly good analogy. When I started this I had low BP most of the time. The hypertension worries me more. If I go to PT or Dr appointments (only places I go) I have to take extra clonidine. I even have to to talk on the phone because BP jacks up with any activity.

Yes, I had to lay supine for 30 minutes then stand for ten. It was three years ago and I was very, very ill so my memory isn’t the greatest of anything much then.