Hi, and a belated welcome to the forum. Mostly I *try*to wait to bring up this topic until I notice someone has a few symptoms of a mast cell disorder, before bringing it up, because I have become very repetitive on the topic, so much so that there may be a revolt. I have noticed you discussed a couple of other symptoms that may be caused by mast cells. The bone pain raises a much bigger flag.
Your bones might feel like they hurt because they do.
Bone pain definitely could involve mast cells. Mast cells are made inside of bones and I have assumed that this is likely why they can cause bone pain. Mast cell disorders involve the MC's releasing their various granules of chemical molecules, over 100 types of mediators, far too readily. I think you should look at a list of mast cell symptoms, and see if you recognize some of your medical history there.
I encourage you not to blow this off, but rather to look into it to whatever degree you think you can. I once listened to a "breakout session" about
managing and tracking potential osteoporosis problems at a patient/doctor mast cell conference.(youtube, actually its audio only,.. perhaps posted 2013?)
Mast cells can be very problematic, in a number of other ways. For instance I have bladder and kidney pain. As an example: I want to address this A.) to avoid pain, and B.) to avoid damage to the lining of my bladder, by triptase ("triptase is like a meat tenderizer" Dr. Theoharides) and inflammatory cytokines. Someone at my other forum has wondered in recent months if it is the cause of her liver problems that have cropped up.
The Blanco et al fibromyalgia study concluded: Fibromyalgia is a mast cell associated condition. They found higher numbers of mast cells in the skin of 100% of the fibro cohort than in the age matched healthy cohort. They also found spindle shaped mast cells in the fibro patients. This is an abnormal cell shape, seen in some MCAS patients, and part of the criteria for diagnosing mastocytosis.
This is copy/pasted from a thread post I did yesterday:
Substance P is a mast cell trigger. It was found to be higher in fibro in a study that looked at cerebrospinal fluid, and in a fibro muscle study. Neuropeptide y, also higher in fibro and CFS, is another mast cell trigger. CRH is a MC trigger. For newbies, CRH is corticotropin releasing hormone from the hypothalamus. (Called CRF/Corticotropin Releasing Factor in some countries.) CRH is messaging the pituitary to hormonally message the adrenals for more cortisol. That is called the HPA axis.
My first link is to Dr. Afrin's signs/symptom list (co-authored by Molderings, whose earlier 2011? Abstract laid out the diagnostic parameters. It looks like these guidelines for diagnosing MCAS (activation syndrome) were first developed by some doctors at a 2010 conference about
this newly recognized thing, the over activation of mast cells. So MCAS (or MCAD)is a very newly recognized mast cell disorder.
Drs have been aware of the more rare mastcocytosis, which has an over proliferation of mast cells, but remain less aware of of the other MC disorders, which are believed to be very under diagnosed. And unfortunately, right now they (and the labs) can miss the nuances of how to handle lab tests, if they try to order tests.
This is the better list of mast cell disorder signs/symptoms that Tiger Tails provided here at Healingwell.
www.wjgnet.com/2218-6204/full/v3/i1/1-T1.This is my thread where I gather links that I think patients may find helpful. Within it, a friend posts a link to a case study. (you have to join to see her posts, they are set up to be more private than mine) the case study is about
a woman who is using cromolyn, a mast cell stabilizing medicine, in a nebulizer, rather than in an oral form. Body-wide ("systemic") MC effects may be better managed using the med in a nebulizer. We discussed there the points in the study about
the reduction to her bone pain, her reduced fatigue, and the study's comment about
the increase of muscle pain etc. around the time of her period, if she forgets to raise her dose at that time of month. This info is intended to be digested over time, at a person's own pace.
/www.mypatientmatch.com/posts/reference-thread-to-share-mast-cell-info-6194 CRH, Corticotropin releasing hormone, is released by the hypothalamus, and it is commnly said to be the first hormone released under stress. This isn't to say you frequently mismanage stress. Suppose you leave your warm house and go into the cold. Dr. Theoharides has said that even a change in temperature around you could technically be a stresser. CRH doesn't only get released because of stress. It might be released because your blood glucose gets a little low. It's released as a normal part of our daily lives. We need cortisol to raise glucose, or to constrict blood vessels when we stand, & the body needs it to help regulate inflammation, keep it from getting out of control.
The hypothalamus is in a brain region called the diencephalon. I might not state this exactly precisely, but in his youtube video "Brain Allergy", Dr. Theo said that the diencephalon manages emotions. So as I read mast cell studies and patient blogs, and listen to Drs, I see people say things like "Anxiety [stressful] triggers mast cells, and mast cells can cause anxiety."
I just read a great blog; someone wrote (paraphrasing):
just when my mast cells are behaving at their worst, is just when I can need my wits about
me to manage all things MC better, but ironically mast cells fiddle with my brain. I need someone to lovingly say, OK, I see what's happening here. Let me point things out to you.
I also get angry at times. Sometimes it has to have been a reaction to a med (which in my case could also really be something called porphyria, involving certain metbolising enzymes). During my periods my husband (ex) said I had too much anger, but of course I preferred to phrase it as having much less patience for the differences between us. Now that I know more about
mast cells, I have to wonder how much they were ruling what was going on.
I have just recently heard Dr Theo talk to a patient group & say that our higher estrogen possibly is why more woman have more problems like fibromyalgia; mast cells being the connected problem. I need to listen to it again, but as I recall, he said higher estrogen is a problem in dealing with mast cells. Post edit. Listened to him on youtube when I walked to the grocery. He said that for an interstitial cystitis study, they found that mast cells in the bladder have estrogen receptors (he might have called them estradiol receptors). When I get a new Dr., I will discuss lowering my estrogen dose.
When I was estrogen dominant during PMS and during what I called AMS/Actual Menstrual Syndrome, I found that a progesterone troche(lozenge), was very helpful for those symptoms, including Headaches and body pain. I especially noticed it in my hands and wrists. (and back) It hurt my hand/wrist to wipe myself on the toilet. My sister with fibro also found progesterone helpful for PMS, but at 1/2 my dose. its prolly not a coincidence that those of us with recognised mast cell issues are definitely the ones that discussed managing PMS over at myPatientMatch, where patient groups are more mixed (by selecting communities then global).
OK, I had better shut up.
Post Edited (Rockon) : 7/9/2016 4:54:06 AM (GMT-6)