New diagnosis long term pain

Post Edited (YLSarah) : 9/15/2017 4:33:10 PM (GMT-6)

Rockon said...
Hi, and welcome. I'm sorry to read about how much you are coping with. There is an alternative diagnosis that you might read about, since it could cover some of your problems that you have comorbid to the fibro. Maybe when you get a good day, check this linked info out and think about if you could have Mastocytosis or mast cell activation syndrome? Mast cells are immune cells that can over activate in some people.

Think of mast cells as a soccer ball filled with ping pong balls. Their contents: a large number of chemical molecules. They stay in their one area, serving kind of as a border patrol, but of a small area. In good times they are on the lookout for perceived enemies, like pollen or pathogens. They can go off like a bomb, releasing all of their chemical molecules, which is called degranulation. Or they may release just some of them ("selective degranulation"). The problems arise when they are trigger happy. Chronic chemical warfare is tuff on us. They are also nearly everywhere, so if several phenotypes (location species) get trigger happy, it can have quite an impact.

Among the numerous molecules that can be released by mast cells are some inflammatory cytokines, heparin, histamine, leukotrienes, prostaglandins, tryptase, proteases; over one hundred different types of mediators, possibly "hundreds".

Best signs/symptom list I have seen so far, published in 2016, World Journal of Hematology, by 2 leading experts, Drs Afrin & Molderings. There is also an article with criteria and a questionaire to use towards making a diagnoses, but hold off on reading the whole article, I don't know that it's necessary to get technical.
Just don't ever assume your doctor would of course know much about this topic. That is unlikely. And they often get testing wrong.
www.wjgnet.com/2218-6204/full/v3/i1/1-T1.htm
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It's certainly not any better than fibro as far as symptoms go, but I believe it is better for some people to take a little bit more time, just to reconsider what needs to be treated first, and how. Possibly some of us spent years off-track, perhaps using the wrong meds, picking away at this or that symptom. MCAS/mast cell activation syndrome, is a very newly recognized diagnosis (2007), with more research to be done, and more importantly, much of the research that has been done, has not been in the journals your doctor(s) reads. It's a bit spread around, journal-wise.

I would not suggest reading the whole thread, but if the topic interests you then search for "Reference thread" at myPatientMatch, (.com) for more info. Some of it will simply not apply to everyone. But at the fifth face/avatar, the section begins "For the fibro patients...", and I put some related fibro/mast cell research there. It's not definitive, but it is certainly intriguing.
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The Mastocytosis Society's site (linked) lists gerd as being associated with mast cell problems. I also have encountered patients with both eosinophil and mast cell problems. Eosinophilic esophagitis (EE) and gastroesophageal reflux disease (GERD) have overlapping features, so for some people it might be something to consider, I don't know what you'll think, or what tests you have already had done. Plus it's not something I read much about, since I don't have Gerd.

Both eosinophils and mast cells are granulocytes, meaning they release granules of mediators, and both may be attracted to a site via the same mediators, through something called chemotaxis. I think of that as chemical attraction.
The Mastocytosis Society here
/tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/

I do see people in my mast cell groups with gastroperesis, but I know of no known direct connection to mast cell disorders. I just checked, and I see that Lisa Klimas (she writes "Mast Attack") has written a couple of brief blogs about gastroparesis, and since she does not claim a mast cell connection, I imagine there wasn't evidence of one (at the time of publication at any rate).

Reading her blogs, I was thinking that it makes sense that for some people gastroparesis could be part of their disautonomia, with some autonomic system neuropathies perhaps? Neuropathies are not unusual in fibro/mast cell disorders. And connective tissue problems also makes sense for others.

However, along those lines:
"Activated mast cells contribute directly to neuropathic pain by releasing algogenic mediators after degranulation [50]. Resident peripheral nerve mast cells are the first cells activated at the site of nerve damage and contribute to the recruitment of neutrophils and macrophages [51]." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3481533/

My point being that mast cells do affect nerves.

Acetylcholine is a neurotransmitter, and when enuf of it is released at a presynaptic point between two nerves, then Ach sends "contract" signals for muscles. I don't see the acetylcholine/Ach discussed much in fibro circles, but it has been talked about by some ME/CFS patients. It's uncertain how far removed from fibro ME/CFS really is. There is a med call Mestinon that affects acetylcholine, and some ME/CFS patients have tried mestinon. It does not work for everyone, but Cort Johnson has one blog (prolly at HealthRising), that may be titled The Mestinon Miracle?

I have seen mast cell patients discuss Ach. In fact just yesterday, once again. Some people were writing that they have too much, some too little. I had a pesticide exposure, one which gets stored in fat, and gradually metabolized into other named molecular structures, and the pesticide's metabolytes can affect acetylcholine.

In my "Reference" mast cell thread at myPatientMatch (search for "reference") there is a little discussion of the various histamine receptor types. While the possible affects of Ach are perhaps interesting for a person with gastroperesis to consider, I also want to bring up that topic because should you ever need to try benadryl (which can be a great medicine in certain situations), it is also anticholinergic (anti-acetylcholine). An important point to know. If you should use it, I want to mention that you should watch to be sure it doesn't turn out to be a problem, possibly exacerbating the gastroparesis.

Final warning,
Some fibro patients are put on the med amitriptyline. (It turns out that it has now been found to be a mast cell stabilizer, by a team with one of my favorite researchers, Dr Theoharides.) I took it for 20+ years. It could slow gastric emptying, according to one gastroparesis blog from Lisa Klimas.

Plus most drs have either not learned or not acknowledged that amitriptyline is mitotoxic (toxic to our mitochondria), bad for CoQ-10 levels, and has a bad effect on fibroblasts, which are associated with making connective tissue).(I have those studies at a thread at myPatientMatch).

Nortriptyline is kind of like a metabolite of amitriptyline...so it's similar, but a next generation. I have no idea if it is mitotoxic, because pharmaceutical companies do not have to prove that meds are safe for mitochondria. I did not see nortriptyline on the mitotoxic med lists, but personally, I am not comfortable with it anymore. I have considered another Tricyclic antidepressant that mast cell patients use, but I am feeling a little gun shy about the entire class.
FYI
If you or someone else reading this didn't know it: Mitochondria are the energy factories of our cells. There is some study evidence of mitochondrial problems in fibromyalgia. I recently posted an article here at HealingWell about how medical journals will not publish studies showing meds are mitotoxic.I got that article from a neurologist that I follow on Facebook, who is focused on biohacking the mitochondria,or as he calls it, mitohacking.

I hope you find some tools to help you alleviate some of your symptoms. It certainly is challenging!