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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Aileen

Senior Member
Messages
615
Location
Canada
nanonug, have a hard time remembering back that far but for me most things usually end up in either a migraine or similar type headache .... very severe ones. I often get pain in other areas, most often neck and shoulders and have been getting diarrhea sometimes after eating certain foods. Not sure whether that is an IBS type change or just my body trying to get rid of something it doesn't like.
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
nanonug, have a hard time remembering back that far but for me most things usually end up in either a migraine or similar type headache .... very severe ones. I often get pain in other areas, most often neck and shoulders and have been getting diarrhea sometimes after eating certain foods. Not sure whether that is an IBS type change or just my body trying to get rid of something it doesn't like.

Hmm, could that be food allergies? Do you take acid blockers by any chance?
 

Aileen

Senior Member
Messages
615
Location
Canada
Aileen, look at this link and see if it rings any bells:
Mast Cell Activation Syndrome Symptoms

I've been following your recent posts on Mast Cell Activation Syndrome. Very interesting indeed. I'll have to review the articles again. Not sure I have the syndrome but if I recall what I've been reading correctly, there are is a grey area of "you don't have it exactly but some of it applies" (how's that for a technical explanation?;)) I'm wondering if something like that might apply. I have many of but not all of the symptoms in the above link. But many illnesses overlap our dd so who knows?

What might I try taking or testing for to see if this might actually apply? I don't want to keep going to my doc with different things lest she think I'm a hypochondriac :rolleyes:. Do you think a trial of ketotifen would tell me anything? I was considering this before, but at that time was mistakenly thinking leaky gut although IBS is still possible.
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
I've been following your recent posts on Mast Cell Activation Syndrome. [...] What might I try taking or testing for to see if this might actually apply? [...] Do you think a trial of ketotifen would tell me anything?

You may want to test your serum tryptase levels. If these levels are elevated, that would suggest MCAS. If they are not, you could wait until you feel really bad to again test your tryptase levels. If the difference between the two is significant (there's a simple formula...) that would also suggest MCAS.

Given that you have IBS, trying ketotifen might be a good test/treatment.
 

Aileen

Senior Member
Messages
615
Location
Canada
anyone know where I can get ketotifen tablets without a prescription that is a reliable source?
 

Ecoclimber

Senior Member
Messages
1,011
This report comes via Seeking Equilibrium.

"New research is pointing to inflammation and has shown that cytokine levels are excessively high in patients that have had Fibromyalgia for over two years. Now, it hasn't been determined whether this in itself is a cause or if it's secondary to the condition. Research has also shown that chronic inflammation and an altered immune system may be a cause of Fibromyalgia."

There is a clinical trial at Indiana University by Professor Dennis Ang with regards to pain, Ketotifen, an antihistamine, and Mast cells.
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
Thanks Ecoclimber for the info about the clinical trial. It appears that this trial is well under way and is showing promise and that there may be a long term (5 years) and much larger study to follow. You might be able to answer this for me, but why does the study have to run for 5 years. For fibromyalgia patients that is long time to think that there may be a treatment for the pain and I'm geussing that will be at least 5 years before it initially goes to the FDA initially.

Obviously my question is why would they do a 5 year study as opposed to a 1 year study for something that could potentially have huge health concerns and even major economic concerns as someone with fibromyalgia is certainly going to have reduced production and probably calling in sick periodically?