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xRobin
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Hi,

My name is Robin. I was diagnosed with POTS two months ago.

I have chronic fatigue syndrome, and unfortunately at this point in my illness has become very severe and I have to spend a lot of time in bed. I had heard of POTS because orthostatic intolerance and other symptoms of dysautonomia are very common in CFS. In fact, I was screened for POTS/NMH when I saw a CFS specialist about 10 years ago - she gave me what she called a "poor man's tilt table test" and at the time I was fine.

Over the last few months I have had a lot of new symptoms. First onset of complex migraines, later followed by a general worsening on my CFS symptoms, episodes of sweating, feeling warm, poor appetite, and pressure in my chest and arms. I had an EKG and had my lady hormones and thyroid tested (I'm 39) and everything was OK.

One evening I felt a little winded and noticed my pulse racing when I was doing the dishes and I can't remember exactly what it was but it was in the 140s. On a hunch I lay down and it dropped immediately to the 90s, and then fell to 76 over a couple of minutes.

It's very difficult for me to get dressed and go out of the house, and it makes me feel horrible for days after, so I don't go to the doctor unless it's pretty serious. I went, and my doctor checked my pulse and blood pressure standing and lying down and diagnosed me with POTS. He didn't seem to know that much about it and is trying to treat me himself. (He knows how hard it is for me to get around and he doesn't know anyone that treats it in my city.) He put me on a beta blocker which has controlled the runaway heart beat and started my first dose of florinef, 0.05, today, but I'm still having symptoms. I still get the pressure in my chest, neck and arms after a few minutes of sitting at the table or my desk. My toes turn pink, then red, then purple. My doctor noticed that I get a rash called livedo reticularis on my legs and arms when I'm sitting. I strangely don't get dizzy!

I've been trying to read about POTS and do home care as much as I can. I've been increasing salt, drinking fluids, wearing compression stockings when I'm out of bed. Coffee seems to help. I try to move around as much as I can and stand up frequently. I've been wearing a wrist pedometer and trying to meet a (very) modest daily goal of walking.

I have been exercise intolerant from CFS for years and it's very devastating to learn that is one of the best treatments. In fact I'm very emotionally overwhelmed right now. I've had to deal with CFS for almost 20 years and now I have another debilitating syndrome that people don't understand and/or haven't heard of. It's just me and my husband and I don't have much in the way of social support; I haven't been able to get out in the community for years and don't have friends here anymore. I just can't believe this is happening.

I would love to go to one of the dysautonomia clinics and get some testing, get a good consultation from an expert, do gentle exercises, but I wouldn't be able to handle it, physically. So I'm making do with internet research and my enthusiastic but inexperienced primary care.

So, I've been very thankful to read some of the forum posts here and see what has helped others.

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Hi Robin,

Welcome! I know this is overwhelming but just take it one step at a time. I, too, have levido reticularis but they don't really have a solid cause for mine. However, that rash is often associated with autoimmune diseases so talking to your doc about full autoimmune screening might be good if you haven't done that recently.

I aalso have pretty severe exercise intolerance. I have a little peddler (just the peddles of a bike that sits on the floor) that I use as I can. When I first started using it, I could only do 3-5 minutes at a sllllooooowwww pace. Now I'm up to 20-30 minutes at a moderate pace. If your doc thinks it's safe for you to try, it might be a good option. It simulates a recumbent bike, which is often the recommended exercise for potsies, and you can get one for well under $100 plus it has a very small footprint (only about 1 1/2 sq. ft.) I have blood pooling in my legs too and this helps get the blod moving a bit even if I only do a couple minutes. You can also put it on a tabletop and use your hands/arms if you can manage. I struggle with the hands/arms more than using my legs for some reason.

Good luck to you. It sounds like you have a good doc who wants to help. Willingness to work with you is half the battle.

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Thanks so much for the kind words of support to everyone!

@Katybug, I did get checked for autoimmune many times over the years and am always normal. My doctor said the rash can be related to orthostatic intolerance as well as many other causes and it's nothing to worry about (except it is pretty hideous!) It only happens when I am standing or sitting.

(I have a little peddle-er! I used to be able to do it for a few mins, which is pretty good for CFS, but my energy threshold is so low now that it's not something I can do. One of the facets of CFS is that you can't really "work up" with activity, you can just do what you do.) Glad your is helping with your circulation.

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