juliegee Posted January 1, 2012 Report Share Posted January 1, 2012 I was listening to some audio recordings of The Mastocytosis Society's 2011 Conference, now available on YouTube: Some of the top mast cell docs were talking to MCAD patients and happened to comment that a small, but very consistent, study had been undertaken testing skin biopsies of fibromyalgia patients. Lo and behold, they were VERY high in mast cells compared to the control group.This confirms my experience. I had EVERY symptom of fibromyalgia BEFORE beginning my MCAD med regimen. I suffered from debilitating chronic every day pain- my head, neck and shoulders were the worst; BUT post-workout pain was indescribable. I am talking minimal work-outs. I remember playing catch with my son and being in such extreme pain for three days afterwards that I needed narcotics. Since taking my MCAD meds, I have NO pain. It is gone I can walk, run, do push-ups, etc. I am sometimes mildly sore, BUT nothing like before I started my med regimen. I really think there is something to this. More studies are sure to follow. Quote Link to comment Share on other sites More sharing options...
issie Posted January 1, 2012 Report Share Posted January 1, 2012 I have so much pain all the time. I was diagnosised with Fibromylgia - but that was before it was discovered that I have Ehlers Danlos. I sort of think that the pain they thought was Fibro is EDS. But, wondering if some of it could be the MCAD. I was just debateing whether or not to take my nightly Claritin. Guess what......I think I will. Only thing, I think it is causing me to have more issues with dehydration. Any suggestions on what to do about that?So glad Julie, that you're out of pain. Hoping for that day to come soon for me too.Issie Quote Link to comment Share on other sites More sharing options...
POTSMama Posted January 1, 2012 Report Share Posted January 1, 2012 Issie, I do hope that day will come for you too! I am fortunate in that I have not had fibromyalgia-like pain but just occasional achy muscles and sore joints, but I also don't have hypermobile joints that I understand EDS patients typically show so it may indeed tie into the EDS/POTS/MCAD triad that a number of people seem to have.But what is bothering me so badly right now is my throat symptoms (driving me to distraction, they're so annoying), and I am wondering it it is from the MCAD or partly due to dehydration since I'm on such a high dose of HI meds (with a smaller H2 dose). The flushing is much less on the meds, and my blood pressure/pulse have mostly normalized (occasional drops in BP after eating, so I take an extra Benadryl and that stops). But periodically (sometimes all day, sometimes for a few hours, often after eating) I feel like my throat goes very dry and irritated, like there's a lump in my throat or mucus or it's swelling but when I look down my throat in the mirror with a flashlight I don't see swelling but just a lot of irritation, redness, and with a weird yellowish tinge to it. I drink tons of water and clear my throat a lot by coughing, but it doesn't seem to help - - when my throat feels bad, I feel awful all over, but when my throat clears up, I feel better. I am convinced it's due to mast cell activation (and not just to foods, but I can feel it starting when I'm stressed or upset, or there's a loud noise, or I smell exhaust from another car), and I still don't think I am on the right dose, right meds, and hoping that the new allergist/immunologist I will see next Friday will get me going in the right direction. But I wonder if others of you who have a confirmed or suspected MCAD diagnosis can tell me if you had throat symptoms like that during your worst episodes, or was it just more fibromyalgia symptoms before you got on the right meds?Sorry to hijack the thread and add something different in here, but Issie's mention of dehydration made me think of this. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted January 1, 2012 Report Share Posted January 1, 2012 This makes sense to me now. I had fibro pain all the time too. My neck and shoulder muscles were constantly in spasm from 1990 - 2008 or 2009. Because I had been in two car accidents within 6 weeks, my car insurance even paid for a massage therapist to come to my house 3 times a week.It didn't help of course. I have to wonder now what my doctors were thinking when prescribingchiropractic care for fibro ? ?My triggers are bacon and tomatoes. I know this because I love bacon and spagetti sauce and triedadding these back into my diet every few months since 2006. I even switched to maverick ranchorganic bacon to no avail.I can't take meds so until they discover a way for me to take meds and not feel horrible, I'llavoid these foods. Rats ... Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 1, 2012 Author Report Share Posted January 1, 2012 Yes, Carol- me too with the throat thing. When my MCAD stuff flares, the throat stuff is the most disconcerting. That is more evidence (to me) that you are not adequately treated. Once you figure out a more effective regimen- THAT will get better. It has for me. I have my fingers (and toes!) crossed that this new doc will be helpful.Issie, I guess just drink more water, G-2. I don't really notice additional dehydration, mouth dryness, etc. that many report with H-1's- not sure why. (BTW, better late than never, but I will post a study- later today- that I dug up correlating high angiotensin II to mast cells, etc....even though the lorsartan didn't work for you )I also learned from the TMS audio tapes that researchers are really in the infancy of studying mast cells. Back in the early 90's when mastocytosis was first identified by WHO (World Health Organization,) it was all lumped into one category. A patient either had mastocytosis or didn't. Now, they have identified many different phenotypes of mastocytosis- systemic, cutaneous, indolent, etc. Well, the same appears to be true for MCAD. They are just now realizing that there are many phenotypes of this as well. What works for me, may not work for another MCAD patients because we may have different phenotypes of the same disorder. Yes, DSY! Avoiding a trigger, if you can identify it, will have the same effect as treating it (after-the-fact) with the meds. "Allergic" reactions most definitely can cause a pain response. Docs are even starting to treat RA patients with antihistamines... Interesting stuff. Quote Link to comment Share on other sites More sharing options...
POTSMama Posted January 1, 2012 Report Share Posted January 1, 2012 Issie, Mack's Mom, Dizzy, Ana, Maiysa, and everyone else I've forgotten - -I can't tell you how comforting it is to have this forum as I negotiate the waters with this new probable MCAD diagnosis. I think I'd be far more terrified if I didn't have the chance to ask if others have the same symptoms (and find out that I'm not crazy because they do) and what they've done about it (I might not have sought out a second opinion doc if I hadn't gotten info on here suggesting I'm not being adequately medicated; and I'm considering contacting Dr. Castells office) and how they feel now (I am hanging onto hope based on some posts that I can get this thing under some kind of control so I can live a more-or-less OK life again and quit feeling like I'm not being there for my husband and kids since I'm sick so much!.Just wanted to say thanks, and to wish everyone a really good 2012! Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 1, 2012 Author Report Share Posted January 1, 2012 Carol-You are so welcome. I KNOW exactly what you mean. There is such comfort in knowing that others with your same DX have similar symptoms/oddities. When I found this group, it was almost like finding my long lost tribe.Another doc to consider, that MAY be more available, is Dr. lawrence Afrin in Charleston, SC. He and Dr. Marianna Castells are the two biggest MCAD experts in the US. Just wanted you to have a back-up. Happy & Healthier New Years to YOU!Julie Quote Link to comment Share on other sites More sharing options...
potsmomma Posted January 1, 2012 Report Share Posted January 1, 2012 Thanks Julie for posting that link. I want to go back and listen to some of those presentations from the conference. I have noticed that my pain levels have improved lately as well. I'm sure my H1 and H2 meds are helping with that but I also started taking Magnesium Calm before bed every night with Miralax in warm water and it is really helping me a lot with muscle pain, GI motility, and hr/bp variations. So thanks for that tip on the magnesium. My serum magnesium has been high before so I didn't think it would help me but it definitely has. I think a lot of my pain comes from slow GI motility and toxins building up inside of me and GERD causing severe pain in my neck and shoulder blades. Anyway like you said, what helps for one of us doesn't always help others but I am certainly more open lately to trying different things Issie, just a thought but your pain might be more from the Mast cell issue than it is from the EDS. I have an EDS diagnosis but I am getting more convinced that the mast cells are causing more of my problems. I couldn't tolerate Claritin because it made my tachycardia worse. Maybe you need to try another H1. I do much better with Allegra. I can't believe how many antihistamines I take and I am less tired and less dry with them than i am without.Carol, Nasalcrom is a mast cell stabilizer (cromolyn sodium) in a nasal spray. You can get it at most drug stores. That has helped my throat irritation because it drains down my throat after I spray it into my nose. Maybe something you might want to try.Heather Quote Link to comment Share on other sites More sharing options...
issie Posted January 1, 2012 Report Share Posted January 1, 2012 Carol,Thank YOU for including me as one to have been of help to you. It's always nice to know that something you've said has been of benefit to someone else. Hoping that the next year will be better for all and that more answers will come our way.Issie Quote Link to comment Share on other sites More sharing options...
Lovebug Posted January 3, 2012 Report Share Posted January 3, 2012 Julie,Do you know how one could locate an appropriate doctor for this? I looked on the Mastocytosis Society webpage but found nothing. I'm going to ask my Dys doctor about this but he's a cardio treating my dys...I doubt he wants to venture much further out into these exotic type illnesses. Also, do you think Lyme disease is related to MCAD or have you heard that it might be linked?TIA Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 3, 2012 Report Share Posted January 3, 2012 I think its interesting that sympathetic excess in many conditions can result in abnormal mast cell activation. Also it appears a large subset of POTS patients have in part elevated endothelial nitric oxide - a molecule released by a myriad of vasoactive peptides. Finally, b2 receptor sensitivity is abnormal in some POTS patients and this receptor plays a role in the processes that can lead to mast cell activation. Quote Link to comment Share on other sites More sharing options...
issie Posted January 3, 2012 Report Share Posted January 3, 2012 Can the endotheial NO be high but in other areas be too low?That explains why Albuterol a b2 antoginst helps me when I have that I can't breathe issue - even though I don't have asthma.Issie Quote Link to comment Share on other sites More sharing options...
Maiysa Posted January 4, 2012 Report Share Posted January 4, 2012 Thank you Mack's Mom for the posting. I listened to the entire conference...wow, very informative. I had a lot of questions and thankfully there were people there to ask many of the questions I had. I just posted the other day about why is this happening at night and they addressed that in the video.....um...I can't remember the answer though. haha. Oh my gosh, I've had 4 hours of sleep, I'm goofy. And I've had fibro since 1997? I think it was. I was extremely athletic at the time and they told me to exercise more. It made me laugh....I knew it was much more than just exercising more. And thank you Carol (Potsmama) We are definitely all in this together. Here is a nice quote that says it all.Friendship improves happiness and abates misery, by the doubling of our joy and the dividing of our grief.Marcus Tullius Cicero Quote Link to comment Share on other sites More sharing options...
Darlene Posted January 4, 2012 Report Share Posted January 4, 2012 macs mom, may i ask what med regimine u are on. Quote Link to comment Share on other sites More sharing options...
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