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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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Chronic fatigue/ME or something else?

Messages
30
I just came back from my second trip to the mayo clinic in rochester, and I am still don't have many answers. After being sick for 4 years I am starting to wonder if the pain I am experience is being generated in my mind rather than do to some external physiological process.

I do not have classic CF/ME. I am not tired during the day, exercise does not exacerbate my symptoms.

What I do have is
slight immune deficiency(hypogammaglobulinemia)
Insomnia(tired/wired)
Joint pains without inflammation(fingers/elbows/knees/toes)
severe food intolerances/ severe constipation(diagnosed with slow motility and pelvic floor dysfunction)
prostate pain/urethral pain
geographic tongue/mouth ulcers
lymph node pain
and many other weird things

I have never any lab work that showed an elevation in inflammatory markers or ay evidence of an auto immune condition. The only visible manifestation of my symptoms is my ragged looking tongue and skin rashes(folliculitis/acne)


I am at a loss on what to do from here honestly. Mayo clinic was my last resort and that was after seeing 15 specialist. I am fairly convinced that no one will be able to properly diagnose me.

I have been tested for everything under the sun and it is all very normal(lyme 4x).


Has anyone had similar symptoms and have you received any improvement from treatment of any kind??
I am currently taking very high dose curcumin in an experiment treatment to block cytokines, incase this is the cause of my symptoms.

Thanks everyone
 

Mary

Moderator Resource
Messages
17,286
Location
Southern California
I just came back from my second trip to the mayo clinic in rochester, and I am still don't have many answers. After being sick for 4 years I am starting to wonder if the pain I am experience is being generated in my mind rather than do to some external physiological process.

I do not have classic CF/ME. I am not tired during the day, exercise does not exacerbate my symptoms.

What I do have is
slight immune deficiency(hypogammaglobulinemia)
Insomnia(tired/wired)
Joint pains without inflammation(fingers/elbows/knees/toes)
severe food intolerances/ severe constipation(diagnosed with slow motility and pelvic floor dysfunction)
prostate pain/urethral pain
geographic tongue/mouth ulcers
lymph node pain
and many other weird things

I have never any lab work that showed an elevation in inflammatory markers or ay evidence of an auto immune condition. The only visible manifestation of my symptoms is my ragged looking tongue and skin rashes(folliculitis/acne)


I am at a loss on what to do from here honestly. Mayo clinic was my last resort and that was after seeing 15 specialist. I am fairly convinced that no one will be able to properly diagnose me.

I have been tested for everything under the sun and it is all very normal(lyme 4x).


Has anyone had similar symptoms and have you received any improvement from treatment of any kind??
I am currently taking very high dose curcumin in an experiment treatment to block cytokines, incase this is the cause of my symptoms.

Thanks everyone


Have you seen a naturopath? Most MDs know nothing about nutrition and I would not trust the Mayo clinic for anything (see their worse than useless webpage re CFS/Me)
 

searcher

Senior Member
Messages
567
Location
SF Bay Area
Have you been tested for a mast cell disorder? MCAS could potentially explain most and possibly all of your symptoms.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
I would say that just because people are having trouble finding it does not mean that there is nothing there. We make the mistake of presuming that medicine has all the answers, and we just need to locate the right practitioner who can unlock what is happening in our bodies; but the truth is that we as human beings do not yet understand the way that the human body works very well. I'm not saying to give up on finding out more; I am, however, saying that you should not presume that it's 'all in the mind' because physicians are having trouble diagnosing your illness(es).

I doubt you would do this to yourself.

-J
 
Messages
30
Have you been tested for a mast cell disorder? MCAS could potentially explain most and possibly all of your symptoms.

I was in fact tested for mast cell disorder, thank you though.

I am ready to try and give up thinking about this illness in my life and try to move on however possible/
 

jadam914

Foggy member
Messages
56
Location
Palmyra, Pa, USA
It doesn't seem to fit ME. I don't know about CFS with the ever fluid and mutiple definitions. Hey, I don't have a medical degree though. If it was me I would find a D.O. Doctor of Osteopathic if you have already been through a lot of different specialist and tests.

Don't think it's something psychological though and don't say that to a doctor. Psychiatry has demeaned lots of physical conditions through out it's history and continues to today. You have physical signs and know something is not right so listen to your gut.

My mother knew she had something wrong and dismissive doctor's till she had a gastric bypass done and they surprisingly found a 7lb tumor. They called in other doctor's to look at it and remove it. Doctor's are people too and they can miss things and don't always have the answers.
 
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