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New Here, Have Me/cfs And Possible Pots


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Hi everyone, I'm really happy to have found this forum.

Basically I have ME/CFS and was diagnosed with it first time around in 1998. I managed to get back to leading a normal life in 2000 and was ok until 2005 when all my symptoms started to come back after a series of viruses. My main ones are: immune system reactivation (sore throat, glands, feeling ill), muscle weakness, severe exercise intolerance, dizziness, hot and cold, flueyness, shakiness, muscle pain, joint pain and severe aching, migraine, nausea and all manner of digestive problems. I used to get palpatations on severe exertion but not ongoing. I am mainly housebound from this and use crutches when I'm out.

Last April I decided to do some yoga because it is generally well believed that yoga is very beneficial to ME/CFS sufferers even in very gentle degrees.

Well, this was not the case with me.

I literally did five very gentle overhead arm stretches each morning, deep breathing in and out on each stretch. I felt good as I did this and for nearly a week I had no apparent ill affects.

Then I started to experience the most frightening symptom I've ever had. My heart, which has pounded on and off in the past on exertion, went completely out of control whenever I sat or stood up. It was literally 170 bpm on standing. I kept thinking it would stop so I tolerated this for six awful days before calling an ambulance. I was unable to deal with my son or get up the stairs as any movement was unbearable. Added to this, I had a very tight chest, severe shortness of breath and even talking caused my chest to seize up and my heart to pound.

While in hospital any talking or movement made my heart race and I kept setting the heart alarm off. The doctors were baffled because my actual heart is ok, it's the behaviour. They gave me beta blockers and sent me home. I'm very worried about the pills as beta blockers are not meant to be good for ME/CFS but doctors don't know much about that either, if they believe in it at all <_<

Since then I'v e experienced similar with my heart although luckily not as fast as that. It gets worse after viruses (I had a sickness bug two weeks ago and my heart races when I get up in the mornings to well over 100). Large meals also makes it race. I also get chest pain and tighness, nausea, dirrohea after large meals, coughing and a horrible shortness of breath.

I'm thinking about POTS as a friend of mine has it and my symptoms are similar.

Can POTS be part of ME/CFS? The symptoms seem to overlap a lot. If I have POTS as well now I want to at least have it recognised.

Can't type anymore hand hurts :blink:

Welcome any advice and look forward to getting to know people :)

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Yes, POTS can be part of CFS/ME. Recognizing POTS is good so you can try treatments, but there are no cures. And be careful of drs who don't understand this connection - they wll tell you to exercise even if you feel poorly. This will NOT cure you and if you have me/cfs will make you much worse, as you are probably aware.

In the meantime, are you familiar with the phoenix rising forum? You may want to check it out: http://forums.aboutmecfs.org/index.php

Also, are you up to date on XMRV news? The FDA/NIH study confirming the link with CFS/ME should be out by the end of the month.

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Thanks dsdmom, yes I heard there are no cures sadly, but at least if I can find a consultant who takes the pots seriously and can advise me that will only be good. At the moment I'm very worried about taking beta blockers and also about my diet as I can't tolerate a lot of solid food.

Yes exercise definitely makes me worse <_< The hospital kept advising me to resume usual activity and not to rest excessively but it was exercise that put me there in the first place!

The study sounds promising, I can't wait for ME/CFS to be taken more seriously. It's a horrible illness to have and many people just don't realise how ill we feel everyday.

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