Clb75

Can your doctor connect you with social services or a social worker? There are community agencies or even your state dept of human services that might be able to help. Are you on disability? Medicare might provide home services to help too.

This happens a lot in people with dysautonomia. A lot of people get it in their legs too. Dr. Raj refers to it as “dependent acrocyanosis”. If you google his name and the term together, an article he wrote pops up with pictures of peoples legs looking red and blotchy. It has to do with blood circulation and blood pooling.

Neuropathy, (tingling and burning)along with dysautonomia are very common in sjogren’s, have you tried discussing your symptoms with a rheumatologist?

There is a time limit on the appeal so make sure you contact your attorney as soon as you can. It’s definitely a process, hang in there.

This happens to a lot of people, it usually has to do with blood not getting to the brain but not necessarily connected to low BP or tachycardia.

Thanks for posting this. I’m starting physical therapy next week to help me get an exercise program together. I’ve heard the protocol is hard but some people have had some good results.

Have you tried florinef or midodrine to help raise your BP?

Hi, I unfortunately have had the opposite experience with IVIG. I have been on it for 7 years for another autoimmune disease, which it really helps. However, I developed POTS 2 years after I started IVIG and it hasn’t done anything to help my symptoms. I think it’s really case specific. It’s always worth a shot though if your doctor can get it approved.

Have you looked into fibromyalgia or chronic fatigue syndrome? These can be causes of fatigue and joint pain.

Please get an attorney! They will help you immensely. Social security has a rule that they have to go by your doctor’s opinion first. If they don’t have enough info, they will send you to a consultation with one of their docs, but this person doesn’t necessarily specialize in your problem area. Records are key. You will also need your doctor to complete a functional capacity evaluation. It basically lists how much or how well you can sit, stand, bend, lift etc. and what your limitations are. This is also a key part of their determination. When I applied, I also printed off journal articles from Dr. Raj and the Cleveland clinic explaining what POTS is and how it affects our bodies. Just so they could have more info about it. I was approved after my appeal and luckily didn’t have a hearing. My attorney helped so much and I don’t think I would have been able to do it myself.

I use one that is organic called “green wise organics”. I found it at Costco. It repels mosquitoes and other bugs. It’s really effective which is not always the case with organic sprays. My child is allergic to mosquitoes so this has been really helpful. There is a bit of an odor when you first put it on but it’s from the citronella...not sure if that would affect your breathing or not.

Some people have a paradoxical reaction to Benadryl, it’s very common. Maybe since you took a max dose, you’re having a reaction more than what’s typical for you?

An EMG and NCS (nerve conduction study) are used to rule out certain types of neuropathy. Neuropathy isn’t caused by dysautonomia but frequently co occurs. Small fiber neuropathy is very common in people with dysautonomia, but it can be caused by different types of diseases. Small fiber usually does not show on these tests, only large fiber neuropathy does. In any event, if you’re having neuropathy issues, it’s a good test to rule out different diseases and narrow down a cause.

I don’t have hyper pots but do have labile BP. Certain meds can send it through the roof as you say. I get a dose of IV steroids after my ivig infusion. The first dose I started at half the regular starting dose but it still shot my BP up by 20 points and stayed elevated for hours. It took 3 months for it not to react and to titrate up to the regular dose. I just started an oral steroid before the infusion but didn’t react to it, probably because my system was already used to it. Granted an iv dose is more potent than an oral dose, but I would be careful. Can you start at a lower dose and taper from there? My oral dose was supposed to start at a 40mg taper over 4 days but I started it at 30mg the first time, then went to 40mg the next time.

Have you had any problems with your sinuses or a bad cold? Any increase in migraine activity? Olfactory hallucinations maybe related to a migraine aura?