Question About Blood Pressure and Circulation Symptoms

[Mya Symons]

I was diagnosed by a rhuematologist years ago with both CFS/FMS. However, most of the doctors I have seen have concentrated on the FMS, so I do not know much about CFS or ME. I was wondering if the following were symptoms of CFS.

First, I have a problem, especially at night, where I am dripping sweat on my upper body (torso area) but my hands, feet and legs are cold. Sometimes I'll wear long johns and hunting socks on the bottom half of my body and a T-shirt on the top.

Also, sometimes I black out/pass out for a few seconds after I vomit. (sorry, it's gross) Once I went to the emergency room after doing this and they did a bunch of heart tests. They taped monitors all over me, hooked me to a heart machine and made me stand and sit down repeatedly. Evidently when I stand up from a sitting position, my heart rate drops significantly when it is actually suppossed to elevate. They told me that when a person vomits their heart rate drops and mine was dropping too far, that is why I passed out. They actually have a medical term for this, but I cannot remember what it is called.

Anyway, it is hard to get information about this stuff from a doctor. So many of them do not believe CFS/FMS are real or they don't know much about it.

Will someone who knows about circulation/blood pressure issues related to CFS please let me know if this happens with people who have CFS? Thank you.

 

[Athene]

Evidently when I stand up from a sitting position, my heart rate drops significantly when it is actually suppossed to elevate

This is absolutely typical in CFS, one of the defining symptoms I would say.
In America it's called orthostatic intolerance and in the UK it's called postural hypotension.

Having this induced by vomiting sounds truly awful and I really feel for you. Fequent vomiting is associated with very low cortisol (just one explanation, there must be many more) and if I were you I would try to get my cortisol level tested early morning and, if it is low, a check for ANAs (autoimmune antibodies). This would be to make absolutely sure you don't have Addisons. It's just a precaution because copious vomiting isn't really a core symptom of CFS:

Night sweating is completely typical in CFS, but I don't know about the sweating in specific areas of the body that you describe. Hopefully someone else will know about this.

 

[Sallysblooms]

I have had CFS for 18 years. After I FINALLY found good doctors I got MUCH better. A year ago, I started to have terrible symptoms. Could not stand, heart racing, awful dizziness,TERRIBLE heat on my body, but toes were always cold. High BPressure. Well, after a year and doctors, emerg. rooms that were clueless I figured out it was P.O.T.S. or Disautonomia. My bp does go down sometimes, but not always, when standing. Takes a little while to go down.

With some people, the blood pressure drops FAST. You need to look for a doctor that actually knows about it. I took some tests for it. My CFS doctor knows about it, but I was too sick to travel to see her for a year. Most of the time, I didn't know what was wrong.

I take lots of good supplements that have helped SOOOO MUCH. Finding a great doctor that understands supplements and knows good, pure brands is important.

Keep learning here and elsewhere and keep looking for a great doctor. Keep us updated and best of luck.

 

[Mya Symons]

Thankyou very much for the information. I would really like to try more supplements. It is hard to find a naturopath in Wyoming, though. I am thinking about looking in Colorado for one. I hear a lot of good things about the help they give people with CFS/FMS.

I have been tested for many different autoimmune diseases and neurological diseases. They could not find anything (besides the diagnosis of FMS/CFS). I did have some confusing results though. I had elevated ANA levels, but not enough to indicate autoimmune disease. I also had elevated antibodies for the Sjogren's syndrome test (I can not remember the name of the test. I think it was a SJA or SJS test.) Again, this wasn't enough to indicate Sjogren's and all the other tests for Sjogren's came out negative. The last test that was confusing was my CBC. They did a differential during a bad flare up and found that I had too many immature blood cells and not enough mature. There are times when my cells are not living to maturity for some reason. The doctor who did these tests actually told me she was very confused by the results. She said she new that something was there and something was going on with me, she just did not know what.

 

[glenp]

Google "dysautonomia" There is lots to this illness

http://www.ndrf.org/

If you search dysautonomia here you will find many helpful posts

glen

 

[Athene]

Thankyou very much for the information. I would really like to try more supplements. It is hard to find a naturopath in Wyoming, though. I am thinking about looking in Colorado for one. I hear a lot of good things about the help they give people with CFS/FMS.

I have been tested for many different autoimmune diseases and neurological diseases. They could not find anything (besides the diagnosis of FMS/CFS). I did have some confusing results though. I had elevated ANA levels, but not enough to indicate autoimmune disease. I also had elevated antibodies for the Sjogren's syndrome test (I can not remember the name of the test. I think it was a SJA or SJS test.) Again, this wasn't enough to indicate Sjogren's and all the other tests for Sjogren's came out negative. The last test that was confusing was my CBC. They did a differential during a bad flare up and found that I had too many immature blood cells and not enough mature. There are times when my cells are not living to maturity for some reason. The doctor who did these tests actually told me she was very confused by the results. She said she new that something was there and something was going on with me, she just did not know what.

Dear Mya,
This is so frustrating and so typical in this illness.
I also have this autoimmune situation and they cannot figure out what part of my body is being attacked. Though they haven't tested very thoroughly and all the doctors waffle when I ask why they don't think it is necessary to check everything. I am hpoing to find an immunologist to ask more about this, as I am getting the impression that regular doctors just don't understand immunology at all.

Googling dysautonomia is a good idea. Also, rummage through all the old threads on the forum because there are several good ones on OI and also POTS.

 

[*GG*]

Are Co-cure doctors a good Dr for Immunology?

 

[taniaaust1]

i agree with what the others here have said, those symptoms sound like CFS rather than Fibromyalgia

Are Co-cure doctors a good Dr for Immunology?

The Co-cure doctors are just ones which are good at dealing with CFS. This doesnt necessarily mean they are good for Immunology thou of cause they should know the basics like any GP would do, it really depends on the individual doctor and if he is a specialist of Immunology or has an interest in that area.

I've found that CFS doctors often have their own areas of interest or their own specialalities to do with the CFS (so specialalities within the CFS) eg the CFS specialists ive seen have been of the following different specialisties an endocrinolgist, internalist, immunologist, psychology. .. all were specialising in CFS.