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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Help identify this rash please

Messages
82
as stated above...i cannot get any further help up here in Canada. People like me get offered only pills to cover symptoms for cfs fibro etc. Im not interested in pills that kill people. I want a cure. Thinking gut microbia transplant
 

me/cfs 27931

Guest
Messages
1,294
According to David S. Bell MD, a flushing rash is associated with pediatric ME/CFS, as well as some early outbreaks. This is just for informational purposes, only a doctor can diagnose.
There are minor differences between adolescent ME/CFS and the adult ME/CFS. One is that abdominal pain is more common while this symptom is not even a part of some adult symptom criteria. In addition, facial flushing is more common in teens.

I recall once when walking down the street in Lyndonville, I saw a teen with bright red facial flushing. He became ill within one or two days and remained ill for years. I made the mistake once of calling this a rash, but it is not a rash, it is flushing – the same as an adult can have when taking niacin.

In some of the early outbreaks, this flushing rash is also mentioned and considered a standard symptom, one that involves the autonomic nervous system, as this part of the nervous system controls the diameter of the blood vessels.

http://www.prohealth.com/library/showarticle.cfm?libid=28892
 
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justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
large numbers of patients with ME have Multiple chemical sensitivity. Phoenix Rising has a whole forum dedicated to Mast Cell issues. I personally do have a solid ME diagnosis (Two dedicated ME Drs have diagnosed me, plus I took part in a Lenny Jason study some years ago and met ALL criteria), and a solid Mast Cell Activation diagnosis. How anyone can say there is no link whatsoever between Mast cells/allergy and ME beats me completely.

Of course most fo us with MCAS are more long term patients who wouldn't be going through a rheumys office for joint pain - I did all that years before the MCAS started up.

I don't suggest the poster doesn't go to a Dr for help with a diagnosis - im just aware that mast cell activation is one possibility that I know a little about and so suggest it as something that could be looked into. If the poster is on facebook there are a lot of good mast cell pages with very kind well informed people.
 

Gijs

Senior Member
Messages
690
@roonie, a very serious disease which give this kind of rash is HIV. I don't know if you have been tested on this. But it can also be somethingelse, it isn't specific for CFS. Good luck!
 
Messages
82
I just spoke with my mother. She stated that when me and my two siblings were little, we all got scarlet fever but the doctor only treated one of us and NOT me. The doctor at the time stated that we never had scarlet fever as bad as our brother so two of us got no treatement. My sister has ended up with scoliosis...5 spine opperations later and now stares at the floor 24/7...cannot function or live a normal life.
 

viggster

Senior Member
Messages
464
I had large skin areas covered with a flushing/itchy/red-rashy thing like this for a long time early after my post-infectious ME/CFS. I think I probably have mast cell activation disorder as well. The first step in treating MCAS is over-the-counter anti-histamines.

I take fexofenadine in the morning & certizine at night. These block the H1 histamine receptor.

I also take ranitidine twice day. This blocks the other histamine receptor, H2.

I believe this is the first drug protocol recommended by Dr. Lawrence Afrin at U of Minnesota, one of the few who studies MCAS. (http://www.dom.umn.edu/bio/dom-a-z/lawrence-afrin). If that combination doesn't help after a while, he will move people onto various prescription drugs to help.

There are also histamines in foods - various websites list them and recommend different low-histamine diets.

The over-the-counter drugs I mentioned are fairly inexpensive and, in the US, easy to obtain.
 

Gingergrrl

Senior Member
Messages
16,171
How anyone can say there is no link whatsoever between Mast cells/allergy and ME beats me completely.

Agreed and I have always found it strange when people said this. But am now thinking there may be an autoimmune disease with multiple autoantibodies that causes POTS and MCAS that is not ME/CFS. But truly I have no idea!