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Mine comes in waves. However, I notice it most in the morning, when I am out grocery shopping, or cleaning at home.
Dr. Diana,
I hope you find some answers for the root of the problem as to why we have that burning feeling because I hate it! 😉
I am going to be following this thread, because I too have the horrible burning sensation, and am on Gastrocrom for the Mast Cell/GI problems. Sorry I don’t have any input on this yet, but would love to hear if anyone else does!!
Cromolyn has saved my sanity. I was in the hospital 13 times from April-July with severe abdominal pain, finally I was diagnosed with a Mast Cell Disorder and was put on Cromolyn. I am no longer suffering from this ailment which I believe is connected to my EDS somehow….
Unfortantly, that is what I am struggling with right now. My age & that EDS is rare. I am on my third time applying for disability. I was just denied again at the appeal level and am waiting a hearing which is another 12-18 months out here in WV. It has been since Oct. 2009 when I first applied. 🙁 Most stressful thing I have ever been with. Go to your state’s legal aide office for help, contact your congressmen, and get an attorney!!!
T-Tapp is an exercise program geared to those with physical ailments and or joint and muscle problems. It’s suppose to be better on the body. I can’t do much but it’s a 15 min exercise that hopefully will help me gain some muscle tone around my joints. Hopefully 😉
I was originally on Cymbalta but I got extreme stomach cramps and had to stop it and was then put on Effexor which I have been on for many years now. However, I was wondering if anyone is on Doxepin. I was thinking about coming off Effexor and going on Doxepin since it also has the anti-histamine affect for the mast cells. Only problem is if I don’t take my Effexor at the same time everyday I have HORRIBLE withdraw like symptoms. I tried coming off of it last August by tapering off and ended up admitted to the hospital with what seemed like to doctors as a TIA mini-stroke but ended up just being horrible withdraw symptoms. ANY imput would be appreciated, this is something I struggle with daily and know I NEED to be on something until I get everything FULLY under control. 🙂
I am glad to know that I am not the only one who believes that we have vascular issues, I am almost positive my Grandmother died from EDS. I am also on Cromolyn. IT IS A PAIN IN THE BUTT! I live in the US so I am not exactly sure how I should get my doctor to go about Ketotifen. Is Quercetin easily available too?
Also, what are some good supplements for EDS (I was told just vitamin C)? I took a multi-vitamin and pro-biotics before being diagnosed with EDS, & Mast Cell Disorder (still trying to figure out if it is MCAD or Systemic Mastocystosis) I just had a bone marrow biopsy on Tuesday! WORST THING EVER!!!
I can never thank you, Dr. Diana, for all the research you have put into this. It feels so good to finally be getting SO many answers after SO many years of suffering! 🙂
I just got prescribed Diamox this past week. I read somewhere that it could interfere with Propanolol. Should I be concerned about this since I will be on both? I also have a large history of kidney stones, and have a few right now actually.
I have the same thing. Everything comes back normal. I am on a low dose of propranolol (10 mg. twice a day) and it controls it for the most part. I can not have ANY caffeine, that is an automatic trigger for me. I do have Mitral Valve Prolapse but it’s not bad at all so they said the pain is not from that just from POTS. Do you have POTS?
Oh wow! I hope it’s nothing serious. I just got home from the hospital from a 4 day stay due to the mast cell stuff. I do have a 7 year old daughter who was just diagnosed this past Friday with the Classical type (we have had her in the hospital twice this year with chest pain) along with me. My sister shows all signs and is waiting for her appointment. My Mom was the first one in my family diagnosed. I have an Aunt waiting on her diagnosis also. We all had to go to different doctors for insurance reasons. I wish we could have all went to the same one!
Oops, didn’t see your post before that one, sorry. I do see a Cardiologist regularly. I believe that we all probably do have the Classical type and my grandmother may have possibly just had a vascular rupture which led to her sudden death? That’s my theory & I guess I will stick to it. 😉
I originally thought I had hypermobility like my Mom, but it made since when the Geneticist told me bc of my POTS and MVP and the way my skin is and bruises I had Classical. Makes sense, so I figured they just misdiagnosed my mother. It just worries me that I could still have Vascular although both Geneticist told both my mother & I that I shouldn’t worry we have too many other symptoms that it couldn’t be vascular — and they wouldn’t even offer to do the testing.
