I don't know what your diagnosis would be, but I had a lot of pain in my muscles, and it moved around from place to place.  It was horrible sometimes!  Getting on the proper dose of antihistamines has taken the pain away.  I don't know if that will work for you, but it did for me.  Some people have luck with turmeric or quercetin or aspirin (if they're not sensitive to salicylates) for pain.

Foods can also trigger muscle pain for me.  I try to stay on the low histamine diet, and that helps a lot.

Fibro was one of the first in my long list of diagnoses. I've been dealing with neurological and muscle/joint pain for years now. I am having the most relief of pain ever on good doses of antihistamines and mast cell inhibitors.

Last week I had a bad exposure to perfumes and cleaning products. My body's reaction was to develop aching pain all over, like a terrible flu. An afternoon of increased zyrtec, benedryl, and zantac, and a long nap, and I was good as new!

I've been in treatment for mastocytosis now for almost 4 months, and I keep seeing improvements. In the past, without this treatment, that type of exposure would do me in for weeks, if not longer. To pop back in a day is like a miracle for me.

So, for me, the pain is now masto. But over the years, since being diagnosed with fibro, I have been treated for hormone issues (thyroid and sex hormones), Lyme disease, and other possible causes of the fibro pain. I don't know if the treatment for masto alone would help so much without those things having been treated.

I think you will find out more as you go into treatment. If it improves with treatment for masto, it is probably masto. If not, keep looking for what might help.

Enko, often times I find myself thinking that in certain areas we as patients do know better then our docs. Not sure WHY she wants youto go off your H1 med. If in cutting it back you felt worse them it seems thats not a good idea. I used to take Zyrtec, Allegra and Zantac combination and was switched by my doc to Claritan, Pepcid combo and my symptoms (to include my bone pain) is worse. I'm SERIOUSLY considering going back to what I was taking before. I think it's prudent for us FIRST to listen to our bodies, share how your body reacts with your doctor and if she still ignores that ask what her thoughts and reasons are. Then if your not in concordance with her, take the meds you know you feel better on (being sure to give all changes in meds a couple weeks at least for your body to adjust) and perhaps look for a different doc.
These are just my thoughts. Hope you can get this worked out.
Kim

I agree with Kim. It is important to listen to what your body is telling you. I also find it is hard, sometimes to get a doctor like a dermatologist to care about pain in my legs. They get tunnel vision, only looking at symptoms that relate to skin issues.

I didn't get good relief until I was on the higher doses used for masto patients. On days when I take extra due to exposures, I feel even better. If I didn't worry it would cause me more troubles, or that it would keep me from responding to them as emergency doses, I would think about taking even more daily!

BTW, my tryptase was normal too, at least at baseline. They kept screwing up the tests that were drawn after a reaction, so I don't know what that woudl have shown. I just kept persisting in getting it checked out, because I was having almost miraculous improvements on the higher doses of both H1 and H2 blockers.  At this point, you might get into a serious fight with me if you tried to take those medications away from me.

The only thing my body is saying to me is: "Oh please just make it stop!". I'm feeling beaten up

Susie,
oh I know how you feel - next time my dermo will say to me to get off the med, I'll start growling @ her. And I'm not kidding!   She ignored the part when I've said that I'm still having problems even I'm taking the medicine and told me to stop taking it because I'm free of dermographism while on it (?!).  

MikeV,
yes, it does feel better when I'm off my feet. My knees and thighs do sometimes flush after taking a shower. And itch too.
About the pain spots - my right knee can sometimes hurt for weeks and I can't bend it all the way. Also there can be random pain spots all over my body - it can hurt for days or weeks and then just disappear. That pain is concentrated, in difference from the general pain in the legs when it's "all around" and it feels like that it's reaching from the outside to inside - from the skin to the bones.

MikeV thank you for your reply

To be honest - I didn't check do my feet flush. But a thing that I can say is that I do feel tingles and heart beats in them when walking or standing.. My palms do tend to flush and become swollen, and it usually happens while walking. That's weird  

I'll try the pin test

kim:
I wish you luck on your search fop right meds. The one thing I notice is that they hurt less duringthe winter, so heat must be an issue. What I use now that at least gives temporary relief.  I spray gastocrom on them, then put some aloe gel on top of that. At first I was using some of the Blue Icy muscle rub, but it has a lot of alcohol & gave temp relief but more pain especially after a few days. I guess maybe it was the alcohol. I also wear sandals when I can especially inside the house. & interesting story when I was in my search, I went to my derm doc & showed him my feet & they turned beet red, he almost lost it checking my pulse to see if i was having a heart attack, then called his partner in & they both just shook their heads & said wow never seen anything like that. Now with my meds & what I do they don't flush as bad, still hurt though not as bad, especially when I'm off of them. The other interesting thing is putting them in cold water you would think would be good, but causes the beet red flush, so I don't do that.
MikeV