A lot of people swear by tumeric for exactly this type problem - muscle and joint pain as well as overall mast cell symptoms improvement. I just started experimenting with trying it myself by adding 1/2 tsp to food once a day, but then I got a virus (not mast cell related) and stopped any experimenting while I was taking antibiotics. I am just now getting better and going to start the tumeric again. People say that they have been able to stop taking Tylenol and ibuprofen because the tumeric helped them so much. So you might want to investigate that.

Thank you Deborah, and Starflower.   Pain is miserable.

I could retest Tumeric again now that I am better medicated, but traditionally it made my skin burn something awful.   Good idea though as it inhibits inflammation.

I will be shortly transitioning to chromolyn sodium as I know that is a good med. for me.  I hope that helps.   I'm pretty certain my pain problems are mast cell related.   And I suspect experiments with Zantac OTC brought on this latest blow up.   Apparently, Zantac OTC makes my skin burn, and makes me increasingly reactive.   I've been off it a couple of days now, and I already feel 100% better.

My list of good meds. is getting increasingly narrow.   Doxepin, Allegra, Chromolyn.   No Ketotifen.  No Zantac.   No Neuroprotek.  

Thanks again for the responses.   I REALLY appreciate the support.
Todd in Tenn.

Benadryl.   Why didn't I think of that ?

What kind do you use ?

I have had a lot of luck with trigger point massage.  Trigger points are little knots in your muscles that tend to settle in and cause a lot of trouble.  Often you can feel them if you massage a painful area of muscle.  I tend to have many of these sensitive points in my muscles and they can cause pain to the surrounding area, or sometimes refer pain to areas farther away from the trigger point.  They get worse when I am exposed to my MCAD triggers.  

My shoulder is one trouble spot.  I have at times had excruciating pain that made it difficult to move but it was cleared up through massage therapy.  

If you think this is a problem, you can search for a massage therapy professional in your area who is trained in "trigger point release" to work on the spots.

You can read more here:
http://en.wikipedia.org/wiki/Trigger_point
and about referred pain patterns, including for hip pain:
http://www.triggerpoints.net/hip-thigh-knee.htm

I hope you find some relief soon!

I was diagnosed with FM 14 years ago, which in hindsight was probably a mast cell disorder (have been diagnosed with secondary MCAS but have not had a BMB). I did not have the standard trigger points at the time. My allergist sent me to an unconventional rheumatologist who prescribed yoga. He has a yoga studio in his office. You could have knocked me over with a feather at the time but I figured it couldn't hurt me and my choices at the time were slim. At the start I could not lift 5 pounds without pain. At the start it felt like the right thing to do in spite of the fact that it hurt. I progressed from yoga to ice skating with my husband (which we did a little in our twenties). From there we went to ice dancing competitively (we have two national titles in the adult category). I also have asthma and AERD so it bothers me when the rink is cold, but I put a fleece gaitor over my mouth and nose when it is bad and skate until the swelling in my nose gets too painful. I also have taken pilates lessons (private ones, not in a class).

All of this took a long time. The key is to start very small and work up slowly. It helped us to do something that we love to do also. It also helps to keep from exercise that jars the body such as biking, yoga, etc. I still have muscle, joint, and what feels like fascia pain, but it is much less debilitating and my physical conditioning is now outstanding.  It also helps keep both my husband and my spirits up, through the diagnosis of our son with serious mental illness and our efforts to help him. It's tough for those with chronic issues to keep moving but the body can only rest for so long without degenerating. If you try this let me know how you are doing.

I have used Epsom salt soaks for muscle cramping/spasming.  The magnesium is absorbed through the skin.  Magnesium can be taken orally, too, but that can cause diarrhea.  In a bath or with a foot soak, use as directed on the package. 20 minutes is recommended, but no more or again, diarrhea can develop.

Increasing potassium can lessen muscle cramps if you are low on it.  Also, dehydration can cause it, even if it's mild.  Be sire to drink lots of water and other liquids every day.  Bananas, if you can eat them, are a good source of potassium.

Hi Todd!
I dont manage my pain level very well. I am in miserable pain more than I am out of pain, but I do have a WONDERFUL Pain clinic Dr. When I do get out of pain, I say, "Wow, this is what its like to feel normal again."  I take Vicodan 10 mg, 4 times a day. I also have Tramadol 50 mg that I take between the Vicodan. (the longer you take an opiod the more your body gets used to it. This protects you from that happening). I also take 800 mg of Neurontin 3 times a day and it is a blessing to me (HUGE). I also have Lidocaine 5% ointment to use topically and another ointment MLLP that is compounded for me and works like a magic cream. I would bet that you are much like me and chronic itching makes the pain worse. That MLLP really helps with curbing it.

I would also agree with everyone here and say that many times, pain levels not cooperating mean you arent medicated enough with anti-histamines. Try adding something like Allegra 180 mg (talk to your Dr about this).

I want to tell you that Zantac is a GREAT med for us masto people but--I cant take over the counter Zantac either. Get a RX for 300 mg Zantac. Tell the pharmacy that you want the orange pills that have a pepperment coating and see if that helps you. You will find that certain meds must be a specfic pills to work... something about the masto does this.

One last thing to consider; Mast cells are called the "Gateway to the Immune System," and masto disorders often come with other auto mmune disorders. Many of those disorders have their own pain levels and can make life a bit hard. Make sure you see a Dr that is educated in auto immune diseases and keep an open mind. I know how hard it is when Drs start diagnosing some new syndrome every month, but you can handle it. Prioritize what you feel and see a Dr like an Allergy Specialist or Rhuematologist and a Dr who treats pain only.

Lastly, start a routine that will help you start your day. I keep my pain pills and bottled water next to my bed. I also keep the pain ointment and my scheduled medicine pill box next to me too. I take those, rub a bit of ointment on and dose off for a bit until it all takes effect. Then I can move and walk easier.

Im sorry for the hand youve been dealt but get stubborn and know we are here for you!!
Hugs,
Ramona