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Knowing that Mastocytosis is found in connective tissue - does that explain why I woke up the other day with pain in every joint? I feel like an old woman! I'm still in pain and now wondering if it will get better in time or if there's something I can do. Or perhaps it's something I've been taking. Another mystery. I've been so good with my diet and I didn't do any unexpected exercise.
Dose anyone suffer from this?
Exercise Asthma Cancer Arthritis Bone marrow transplant Pain Prednisone Fibromyalgia Depression Menstruation Mastocytosis
Hello Melp, I don't know about anyone else, but I notice it mostly in my shoulders/collar bone, wrists and hands. The ache is always there. I wake up every morning and flex everything to make sure they all work. Some times seem worse than others. I haven't taken anything for this as I don't want to set anything off. As long as I can keep my mind busy, I seem to get through the day. Like you say, another mystery. That is what makes this disease so special I guess. My best to you and yours.
My son is 21. Undiagnosed 10+yrs still (?). The pain in his knee bone is extremely severe. He has all the other masto symptoms minus the skin ones? Does anyone else get such severe localized bone pain? thankyou.
Hi everyone,
I have very bad pain in my upper arms, and shoulders,lower back and legs. I have always thought it was arthritis. Now I'm thinking it may be caused from the s.masto.
It has taken over my bones,stomach, heart and lungs.It has taken all my energy and sometimes it even takes my mind over. But most people think I am just lazy and feeling sorry for my self when I lay on the sofa and don't feel like getting up.I stay depressed a lot.
I don't have the energy or the breath to exercise.I just get worn out if I have to go shopping for food.
I have fought this disease for several years.
I hope everyone can get some sleep tonight.
I have severe bone pain in my hands, feet, and hips.
It feels like my bones are breaking! It is one of this diseases little joys.
There isn't much they can do for it either. I did Interferon for as long as my body could handle it and it did relieve bone pain for close to a year.
They can do steroids for short peroids of time but steroids cause bone loss and almost all of us already have bone loss. I am 37 and have the bones of a 60 year old woman. So, I don't do steroids.
My dr. is trying to push Gleevec lately because of my pain but I will not do it unless I get so bad I can't work.
I am not convinced that is the route I want to take.
I have wondered about Cymbalta. (it is an anti-depressant) But they say they have found it helps with fibromyalgia pain. It works with the nerves or something....I have thought about asking my dr. what her opinion on the drug. Has anyone tried it for pain?
Good Luck! I hope you find something. If you find something that works please share the news with all of us. I am always looking for something new to try.
Hi,
This is a great discussion as this is never discussed as far as I know in any conventions etc..I occasionally have bone pain but my everyday symptom is mostly more like muscle ache and extreme tightness. Does anyone know if there are mast cells in the muscle tissue? I mean tight and achy all over head to toe. If I play tennis two days in a row I'm done for several days and feel like every muscle is exhausted with no strength like you are carrying around such a heavy load or got hit with a truck...just like you're getting the flu. And it is not only when I exercise. Achy, chills, fatigue and yes it does lead to depression which I also have. I too feel people (family) don't always understand and I feel guilt over my lack of energy for my family. I hadn't thought about this as part of sm but hearing that several people are also experiencing it makes me wonder.
Hi everyone. Great to hear from you! I found it almost impossible to work the other day. My local General Practitioner (GP) gave me some Voltaren ( a pain killer with anti-inflammatory properties) which is helping - I think. Well, I woke up with considerably less pain after my husband, the night before (bless him) massaged my hands and I lightly massaged my legs. There seems to be lots of fluid retention as well which may explain why it feels like muscle pain. I had an endoscopy today so couldn't take the pills so that might explain why the pain is returning tonight. I do hurt from head to toe too, but seems to be worse in my arms and hands. This link may help with your question Cynclaire:
http://en.wikipedia.org/wiki/Connective_tissue
(this post is taking ages to write - I keep needing a break)
One thing I'm determined to do is walk for half and hour everyday just to keep moving, not stiffen up and keep a healthy heart and immune system!
I just ignore the rash flare up and take my histamines.
I'm still at early stages (diagnosed end of last year) of working with my Haematologist/Oncologist so depression pills, this pain and my gastro issues are still being resolved. I have another appointment in a couple of weeks. So will keep you posted. I live in Australia by the way.
Time for food and meds! all the best... - Mel
Hi Catani,
I'm 37 too! Gleevac - My Oncologist won't give it to me until I have kidney or liver problems. I've read about it and spoken to a lady you has gone through a tough time with it - and I'm not sure about it either. Gleevac, a Cancer treatment, can destroy my best asset - a good immune system. So I'm very thankful to my specialist for administrating cancer treatments as a last measure.
I take vitamin D with calcium everyday without fail to ensure the masto is very slow at replacing my bone marrow. Not looking forward to the day I need a bone marrow transplant.
My first year, since diagnosis, I was in denial - but now I'm working hard at doing the very best for my health. We're even moving to a more affordable, small country town for a slower lifestyle, fresh air, fresh fruit and vegetables, more time to prepare and eat meals and exercise. So looking forward to it. It's probably good timing as my job is working on a Mac and that's incredibly painful right now.
Will keep in touch.
-Mel
I was doing some research on the web and I suspect that the pain and swelling came on suddenly because I started menstruation. Apparently hormones play a part in all this. Don't understand too much so this is something I'll be talking to my specialist about. The question is now why all of a sudden? - the only thing I changed lately is my diet - dramatically because I feel sick after every meal. I'm thinking now - I'm being so healthy that my body has nothing to deal with (histamine wise) that it's now attacking itself! I think I'd rather be sick than be in constant pain and not have full use of my limbs.
The decision now is whether to start take steroids now or wait until i can't stand the pain anymore.
What experiences have you had with steroids?
Crossing my sore fingers the pain will subside soon and perhaps I'll only have this pain only 2 weeks out of the 4.
I have been experiencing localised pain around my knees, especially where my muscles are weak from an old injury/surgery. I've read today that stretching (which is very boring) is really important and helpful.
Has anyone considered yoga or tried it?
All the best - Mel
I guess I'm not the only one who feels 90 years old when I wake up!! The joint pain is getting worse and is somewhat new other than my spine and hips, odd how we're all getting it now??? It does show up in places where I've had injuries though much worse.
I was told steroids were a no no but they have always done wonders for me!! I know the long term side effects are bad but short term are pretty good for the most part! I love prednisone! Docs don't!!
Stretching is supposed to be good though I usually hurt myself which is an added bonus I find!! I started very very light weights which actually hurts my joints and my muscles but I feel so lazy and must do something other than sitting around groaning!!! LOL
And yes, everyone and their cousin has insisted I do yoga but..... I haven't yet but I will, I promise!! It is supposed to really help and they do have yoga for cancer patients and those going through chemo which might be good for people like us. I have the number... I'm calling tomorrow, if I don't sleep all day again!! It's so hard to conduct one's self in life when one never sees daylight!!! And yes, people think I'm lazy too but if they were missing 70% of their bone marrow and feeling God awful then they wouldn't be running any marathons either!!!
And not sure who mentioned this but I heard that bone marrow transplants are not remotely possible for us. My doctor had that horrified look on his face when I asked him so I gathered that they have had some bad results with that, fyi I was really bummed to hear that considering the bone marrow issue is so bad!!
Wishing everyone a great night, lots of sleep and no pain!!
Leslie
Here's a link to low-histamine food I have been using - it might be helpful. I've been adding and subtracting with the foods depending on my own reactions.
http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm
I've been taking steroids for the pain for the last 4 days. It's helped a lot to keep active - working on the computer and painting and sanding rooms. But I still have pain depending on what activity I'm doing. I was hoping it would go away as I said before. It's a short course of 5 days (my first time) so I'm due to start reducing to 2 halves a day in the morning. Will see how I go with work with week! Can't wait for my appointment on Wednesday. I'd like to add that this has been very hard for my husband to accept. I've had to say to him - stop stressing - it just makes it worse for me. He's really tried hard this week to be supportive - love him for that!
Glad to here your trying the yoga Poetessa! I'm keen but working full time means at the end of the day I just want to curl up into a little ball and listen to my music than drive to a yoga class. My plan is to try a DVD at home. Very interesting that they have yoga for cancer paitients - I wonder if they do that here in Australia?
It concerns me that I could loose so much bone marrow in the future. My specialist is the one who said a transplant would be a step down the track. Perhaps he knows something we don't know or or still learning. I'll ask for you.
All the best - Mel
Just to update, my Oncologist is now putting me on NSAIDs for the joint pain.
http://www.tmsforacure.org/glossary.shtml#N
Simply because of the long term effects of steroids. I'm also experiencing hot flushes - maybe normal for masto or maybe from the pills - will see. Looks like this maybe an ongoing problem - we just have to wait and see (too)! I've found 30 minutes of exercise everyday is also a good pain relief. My nutritionalist has advised me on anti-inflamatory foods and herbs to include in my low-histamine diet that agrees with my gastro. My elbows are the worst simply because I work full time on a computer. I use a hot water bottle for pain relief at work - it is also very helpful to rest my 'mouse' rist on it. I'm suspecting the muscles in my upper arms are really sore because they are naturally weak - working on that with a few exercises. It has been difficult to accept this aspect of masto - because I've always been active. But i'm staying so focussed on keeping healthy in every way possible. Taking lot's of pills (natural and prescribed) to reduce reactions to the mast cell degranulation. Still doing everything, just slower and in pain. (wishing for a pain free day soon)
All the best everyone,
-Mel
Oh, I forget to mention that my Oncologist and I know that people with masto can be allergic to NSAIDs but he decided that because I have no asthma they won't be a problem. So be sure you have no asthma before taking them - it can be fatal.
http://www.medsafe.govt.nz/Profs/Puarticles/nsaid-induced.htm
luv ya all,
-Mel
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