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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Symptoms >> Is this fibro or masto? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1319918495 Message started by Enko on 10/29/11 at 09:01:35

Title: Is this fibro or masto?
Post by Enko on 10/29/11 at 09:01:35

For those that have fibro: what are your symptoms?

I'm having problems with pain in my muscles and bones (for instance - my knee hurts for more than for 4 weeks and then just stops), and my legs (especially feet) are feeling soooo tired and painful.

Title: Re: Is this fibro or masto?
Post by Joan on 10/29/11 at 13:13:05

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.

Title: Re: Is this fibro or masto?
Post by kimtg68 on 10/29/11 at 15:09:32

Enko, although I was told by a rheumatologist that I had fibromyalgia that was after all test came back normal. He started checking pressure points and he pushed so hard beneath my collar bone I gasped. That was the only place that caused me any discomfort. But since that time I have much worse foot pain and bone/joint pain and rarely but occasional muscle as well. Now the muscle I think is because I have become so inactive and when I have a good day I usuallyoverdo it so I think thats why my muscles get sore. My feet I'm beginning to think is a neuropathy type thing. Actually I'm beginning to wonder if perhaps I'm starting to experience more neurological type symptoms. So I'm sharing all this because I thought perhaps you may want to consider the neurological aspect. I do not have confirmation from a doctor on this but I can tell you my mother-in-law has neuropathy in her feet and legs and now I walk like her!!! :-?
Kim

Title: Re: Is this fibro or masto?
Post by Susan on 10/29/11 at 15:15:40

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.

Title: Re: Is this fibro or masto?
Post by Enko on 10/30/11 at 02:50:53

Thank you all for replies! :)

So far I've been diagnosed with urticaria (factitia) and given H1 blocker by my dermo. My hematologist is working on possible MCAD diagnosis, since my tryptase returned normal. Still there's some testing ahead.

I did told about the pain to my neuro last Thursday, but she didn't make any remarks..

When I've first started taking H1 for urticaria I've noticed that my legs hurt less. However, my dermo wants to get me off and told me to start skipping doses. First time I've skipped it (cca 10 days ago) the pain returned and I could barely lift my feet! My legs felt so sleepy and painful.. I'm now back on the med (I take one pill in the morning, that's 10 mg of cetirizinum based med) but that pain is still here :-/ Would upping the med help?

Title: Re: Is this fibro or masto?
Post by kimtg68 on 10/30/11 at 03:16:01

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

Title: Re: Is this fibro or masto?
Post by Enko on 10/30/11 at 13:35:25

Hey Kim :)

Oh my dermo was so happy me being negative for dermographism while on the med (that was actually supposed to suppress it!) that she told me I'm alright now, ignoring the stack of other symptoms I've told her :(

My legs are sleepy :-/ Too bad they can't drink coffee ;D

Title: Re: Is this fibro or masto?
Post by Susan on 10/30/11 at 20:20:17

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.

Title: Re: Is this fibro or masto?
Post by mikev on 10/31/11 at 07:46:52

enko:
A quick note on your feet as they are my most painful area usually. Do they flush? & when your off them do they feel better. According to
my doc those symptoms where a give away that they were masto related rather than fibro. The interesting part of mine a lot of time when my skin is bad on the rest of my body, my feet seem to hurt less.
I've been with this for 6+ yrs & sometimes I think the places that hurt more override the normal pain. Do you have the 8 areas or so that hurt? My general is also a fibro guy & said since mine was so wide spread that he didn't think it was fibro. Plus mine is skin with almost no joint or muscle pain.
MikeV

Title: Re: Is this fibro or masto?
Post by Enko on 10/31/11 at 09:20:38

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.

Title: Re: Is this fibro or masto?
Post by mikev on 10/31/11 at 10:32:59

Enko:
See with me my feet flush after a walk or if I stand too long on them, actually standing on them hurts more than walking. My pain just veries in intensity, never totally leaves. Actually the only thing that flushes are my feet. Mine is totally skin. The more weight on the skin the more pain. Mine goes with a Ckit mutation where the skin is the organ. To be honest not sure what your is. To me you sound like
a combo. I don't think flushing is part of fibro where it sure is with masto. A quick test of neuropathy, which you can do yourself is the pin prick test. Get a safety pin & prick your feet. With me I can actually feel it just at contact point, that's why my neuro doc said no to neuropathy as my nerves aren't dying they are wired from all the histamine release. Have you tried tramadol for the pain? It doesn't release histamines, although the problem it just lowers the pain a few levels doesn't take it away. We are all so different is the problem.
MikeV

Title: Re: Is this fibro or masto?
Post by Enko on 11/01/11 at 09:19:46

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 :)

Title: Re: Is this fibro or masto?
Post by kimtg68 on 11/04/11 at 02:06:20

My feet will flush and it's one of the places that IF I get hives I get them on the tops of my feet. But on top of the skin issues, especially first thing in the morning or if I've been sitting awhile, when I go to stand/walk my feet HURT! So much so that I have to waddle the first 10-20 steps before the pain eases back some. I don't have a solution or knowledge of what might help this. I'm hoping that once I find the right combination of medication for me that much of my pain and bizarre symptoms will ease away.
I've read from others that once they find the right combination of medications that their symptoms ease up. So perhaps some experimenting is in order here. Hope you find relief soon.

Kim

Title: Re: Is this fibro or masto?
Post by mikev on 11/04/11 at 06:02:14

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

Title: Re: Is this fibro or masto?
Post by kimtg68 on 11/05/11 at 03:41:25

Mike, where do you get this spray gastrocom? Is it a prescribed spray?
Kim

Title: Re: Is this fibro or masto?
Post by Enko on 11/05/11 at 03:49:57

Mike,

I can feel the poking :) My neuro told me that I have exaggerated reflexes on my legs, especially it's noticeable on the knees (and always makes me laugh when she does the examination with that little.. hammer or whatever it is, I don't know the english word for it). Any thoughts on that?

Title: Re: Is this fibro or masto?
Post by mikev on 11/06/11 at 06:44:41

enko:
good sign it's not neuropaty then. the knee thing sounds to me like
many just be real sensitive as I am. I think the key is the flushing.
flushing usually means masto although to tell you the truth I'm not
sure that there is any difference in pain level. From what I read people who neuropathy have lots of foot pain even when they are laying down. When I get off my feet they don't hurt as bad.
Kim
I just take normal gastrocrom put it in a nasalocrom spray bottle & use it that way, like I said does seem to reduce flushing still questionalbe for pain.
MikeV

Title: Re: Is this fibro or masto?
Post by Susan on 11/08/11 at 19:45:03

Hey Mike,

I was thinking about you the other day. I saw an allergist who told me that Ketotifen will stop the skin from expressing allergies, but that Gastrocrom will not. He was trying to talk me into switching meds so he can skin test me for allergies. He claims the testing will work if I am just taking Gastrocrom.

Have to admit, his telling me that made me even more determined to stay on the ketotifen. I know you had trouble with it, but I wondered if you would get the relief you need from the Gastrocrom if this doctor is right.

Glad it is helping some of your issue!