Hi Beverly,

  It does sound familiar.  In the beginning, I could barely put my feet on the floor when getting out of bed because they hurt so much.  I also had a lot of pain around my joints, especially back and hips.  Sitting still caused the worst stiffness and pain!

  If you had a store of estrogen, the hot flashes might not start immediately.  That definitely can cause flushing, but so can mast cell degranulations.

  I've found that being on a proper dose of H1 and H2 antihistamines and an occasional Tylenol has reduced my flushing and pain to nothing most of the time.  Occasionally, I'll have a bad day or two and experience a little flush or pain, but very manageable.

  You might want to ask your doctor about increasing your meds.

This is very interesting Heather and it makes sense to me now why I´m having lots of stiffness and joint pain too.   I find that if I´m off of the singulair much then the pain really makes itself known!!!  

I have seen, however, with my son´s and my own case that since we both have autoimmune markers, these markers are showing where the MC mediators are causing inflammation.   His markers are more specific to the connective tissues and sure enough this is where he has issues, in his joints and connective tissues - pain, inflammation.    So, at least with the autoimmuners, this seems to be the damage the mediators produce in us, at least drawing these conclusions from my son´s and my case.

Hi Beverly,

I too have the pain in my lower legs and lower back.  When I am in a flare the pain in the long bones will continue up above my knees and go into my lower arms as well.  I have been through Taxol treatments with breast cancer.....I liken the pain to the pain those treatments caused.  It is a 7 or 8 on a  1-10 scale.  I find it is worse in the morning too.  It is a deep bone pain, like someone is holding that long bone in a vise grip!  And it just radiates....ugh  I will also get the same kind of pain it at the end of a "series of symptoms" when I eat (food is my big mast cell trigger).  

I have the experts who have posted above me  (a bit intimidating)....   But I thought I read somewhere that most histimine is "made" in our body in the early morning hours.  Have any of you read this?  If that is true, it could explain having more discomfort when you wake up???...not sure.  

I had a Dr. tell me that the mast cells in the brain, if irritated, can cause a "mis-communication between synapses." This can also cause different types of neuropathy  (in reference to the tingling in your toes and the extra stress in your left foot). And as with most of our testing, it would give a normal value when tested for conduction. (Whether or not it is a "true" neuropathy, it still exists for us!)  It is my understanding that the only way to determine if that is the case is with a specific/magnified MRI of the brain. (It could show "more than normal" mast cell activity.)

Talking about autoimmune diseases.  I have two..Hashimoto's thyroiditis diagnosed at age 25 and Sjogrens (recently diagnosed).  I have also had a complete hysterectomy (age 35).   Interesting correlations??  

I wish you the best in all of your testing!  I hope the end result is a difinitive answer and a good treatment plan!   Hugs, Lynda

Thanks for sharing your experiences with me, ladies.  I want to be 100% sure the TMEP dx is accurate and then continue with tests to see if it is systemic before changing meds.  It helps me to know exactly how the joint and bone pain is affecting everyone.  Three more days to derm #2....then about a week or so for biopsy #3 results...then hopefully on the path to knowledge and relief!

Beverly

Bev, I have TMEP to. But it is not systemic. I have systemic symptoms. I have esphogatis, gastritis, reflux, esphogeal errosion, hives, joint pain, bone pain and many other symptoms. But I just want to set your mind at ease, that many of us have all those things but it is not systemic masto for us. My bone and joint pain has been so bad that I have had to pull over while driving and I would cry and have to try and get a hold of myself, there has been times where I couldn't open a door, zip a zipper, change my babies diaper, pain in my feet so bad where I could barely walk. I'm 33 and when it get's bad like that I feel like I'm 80 years old. BUt one thing I have learned through these nice people on here is as soon as you feel the pain coming on take some pain meds because if you don't get a hold of that pain before it gets out of control it is harder and takes longer to get under control at a more tolerable level.  My pain is usually in my feet, hands, knees and long bones too. I take ibuprofen and it works the best for me, it is a trigger for some masto patients but others can take fine. Also have you been able to trigger out your triggers? Dairy I find causes the bone pain for me. Gluten is another big one too. Another thing that makes my pain worse is being cold, having cold hands or feet so using hot pads or heated rice sacks which are so easy to make also help tremdously. Good luck on your appointment.
Melissa

Beverly, I'll try to explain the best I can....hopefully someone else with more experience will jump in. Mast cell degranulation releases those chemicals like histamine it also causes other inflammatory mediators like brandykinin, leokotrienes, prostaglandins, etc to be released. Mast cells are in your skin, lungs, intestinal tract, your nose, connective tissues,around blood vessells and nerve endings. All those different mediators can cause pain, inflammation, and other stuff. A lot of us have joint and bone pain and do not have systemic mastocytosis. I can understand how if mast cells are in connective tissue I can understand how we can experience joint pain but the bone pain....that is harder to explain. Maybe someone else can answer this.....is there mast cells in the bones, or is the long bone pain caused by inflammed tissue surrounding the bone that just makes it feel like it is the bone hurting when it is really the tissues? Anyone??? All I know is just when I think understand masto I realize I still have a ways to go. Lol!
I have not have a bone marrow biospy because my tryptase level was only 3.4 or 4.3 can't remember and have been told by a few doctors and others on here they generally don't do a bone marrow biopsy unless your tryptase is 20 or above. So I don't need one. My diagnoses came from my skin biopsy. TMEP is hard to diagnose and is often given as a differential diagnoses and clinical correlation is necessary. Is that what your skin biopsy came back as? A differential diagnoses of TMEP? That is what mine came back as and one doctor over looked it and another doc confirmed the TMEP. I have had full work ups for all autoimmune diseases and they are negative except for APS. But was diagnosed with fibro also.
Anyway I don't if this helped... hopefully some else will explain it better. Take care
Melissa

I have had really bad joint pain lately.  Wonder if it is because I am weaning off my gastrcrom?

On the other hand, I just moved recently and I am sure that has something to do with it as well!