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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Symptoms >> Tell me about the joint/bone pain, please! http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1322772575 Message started by Bfrey on 12/01/11 at 08:49:35

Title: Tell me about the joint/bone pain, please!
Post by Bfrey on 12/01/11 at 08:49:35

I am still in limbo regarding my TMEP dx; I have an appointment next week with a Univ. of PA derm and will get have my skin biopsy sent to Dr. Castell's lab. I have a clinical dx of TMEP and two biopsies that were suggestive of TMEP but not positive. Of course my concern is if it is TMEP, finding out if it is systemic. My other symptoms that might suggest systemic involvement are esophagitis (taking Xantac 300 mg. b.i.d.), flushing (which I attribute to my hysterectomy 1 1/2 years ago, although the flushing started 6 months are hysterectomy instead of immediately, which is much more common). Also about the time my hot flashes started I began having bone pain. I also attributed that to the hysterectomy. I had my annual gyn. visit today and asked if the hysterectomy (ovaries out as well) and lack of estrogen in my system are causing the joint pain. I was surprised when she said no. It's worst at night time; I sleep on my side and when I roll to the other side it's very painful, and sometimes gettting out of bed can be a real ordeal. If I'm sitting for over 20 minutes or so my back and legs hurt when I get up. I also have a tingling toe and foot that comes and goes; last year it was so bad I finally saw a neuro for that and all tests came back negative, including nerve conduction. I notice I am clenching my left foot much of the day without meaning too. I don't have any bone pain other than my back and legs. Does this sound familiar?? I'm getting anxious to find out what is going on.
Many thanks,
Beverly

Title: Re: Tell me about the joint/bone pain, please!
Post by Joan on 12/01/11 at 11:53:46

Hi Beverly,

It does sound familiar. In the beginning, I could barely put my feet on the floor when getting out of bed because they hurt so much. I also had a lot of pain around my joints, especially back and hips. Sitting still caused the worst stiffness and pain!

If you had a store of estrogen, the hot flashes might not start immediately. That definitely can cause flushing, but so can mast cell degranulations.

I've found that being on a proper dose of H1 and H2 antihistamines and an occasional Tylenol has reduced my flushing and pain to nothing most of the time. Occasionally, I'll have a bad day or two and experience a little flush or pain, but very manageable.

You might want to ask your doctor about increasing your meds.

Title: Re: Tell me about the joint/bone pain, please!
Post by Starflower on 12/01/11 at 12:20:34

Ditto what Joan said. When my mast cell disorder was really flaring I took so much Tylenol! It was worst at night... my hips, knees, elbows, shoulders, and the small joints in my hands and feet. Sometimes the pain would be so bad that I couldn't fall asleep until the Tylenol kicked in. Other times I would fall asleep OK, but wake up with my joints screaming at me for laying in one position too long.

Gastrocrom made the biggest difference for me on this symptom. In my case, I believe that the joint pain was due to a combination of histamine and antibody-antigen complex formation (histamine makes complexes unusually sticky, so they lodge in places like your joints, kidneys, small blood vessels, etc...). My ANA levels weren't high enough to set off any alarm bells, but the pain was very REAL and felt like descriptions I've read about lupus. Not all mast cell patients get this kind of pain... Joan and I just both happen to have a mast cell disorder plus an autoimmune disorder. Post-surgery is a common time to develop an autoimmune disorder because it causes so much physical stress on your body.

Heather

Title: Re: Tell me about the joint/bone pain, please!
Post by Lisa on 12/02/11 at 02:45:04

This is very interesting Heather and it makes sense to me now why I´m having lots of stiffness and joint pain too. I find that if I´m off of the singulair much then the pain really makes itself known!!!

I have seen, however, with my son´s and my own case that since we both have autoimmune markers, these markers are showing where the MC mediators are causing inflammation. His markers are more specific to the connective tissues and sure enough this is where he has issues, in his joints and connective tissues - pain, inflammation. So, at least with the autoimmuners, this seems to be the damage the mediators produce in us, at least drawing these conclusions from my son´s and my case.

Title: Re: Tell me about the joint/bone pain, please!
Post by Mousse on 12/02/11 at 08:10:51

Joint and bone pain are probably my worst symptoms. I have a very hard time @ night trying to find a way to lay that doesn't hurt. I have just started with antihistamines - when do you take the singular? Thanks, Cindy

Title: Re: Tell me about the joint/bone pain, please!
Post by lynda51 on 12/02/11 at 09:05:00

Hi Beverly,

I too have the pain in my lower legs and lower back. When I am in a flare the pain in the long bones will continue up above my knees and go into my lower arms as well. I have been through Taxol treatments with breast cancer.....I liken the pain to the pain those treatments caused. It is a 7 or 8 on a 1-10 scale. I find it is worse in the morning too. It is a deep bone pain, like someone is holding that long bone in a vise grip! And it just radiates....ugh I will also get the same kind of pain it at the end of a "series of symptoms" when I eat (food is my big mast cell trigger).

I have the experts who have posted above me (a bit intimidating).... ;) But I thought I read somewhere that most histimine is "made" in our body in the early morning hours. Have any of you read this? If that is true, it could explain having more discomfort when you wake up???...not sure.

I had a Dr. tell me that the mast cells in the brain, if irritated, can cause a "mis-communication between synapses." This can also cause different types of neuropathy (in reference to the tingling in your toes and the extra stress in your left foot). And as with most of our testing, it would give a normal value when tested for conduction. (Whether or not it is a "true" neuropathy, it still exists for us!) It is my understanding that the only way to determine if that is the case is with a specific/magnified MRI of the brain. (It could show "more than normal" mast cell activity.)

Talking about autoimmune diseases. I have two..Hashimoto's thyroiditis diagnosed at age 25 and Sjogrens (recently diagnosed). I have also had a complete hysterectomy (age 35). Interesting correlations??

I wish you the best in all of your testing! I hope the end result is a difinitive answer and a good treatment plan! Hugs, Lynda

Title: Re: Tell me about the joint/bone pain, please!
Post by Joan on 12/02/11 at 15:19:04

You're right, Lynda, the body produces the most histamine in the early morning hours, many times the amount produced during the day.

Have I mentioned that I took Taxol when I had undiagnosed SM? I had to take a lot of meds so I didn't react to it, and prednisone for 7-10 days after each treatment to keep the inflammation and pain down. Oh, that hip pain!!!

Mousse,

When I've had some tingling in my feet, taking vitamin B12 and magnesium has helped. It might not work for everyone, but it has for me. I think prostaglandins must cause some of my pain and stiffness when I occasionally have it, because Tylenol makes it disappear (can't take other NSAIDS.).

Title: Re: Tell me about the joint/bone pain, please!
Post by Bfrey on 12/04/11 at 05:34:55

Thanks for sharing your experiences with me, ladies. I want to be 100% sure the TMEP dx is accurate and then continue with tests to see if it is systemic before changing meds. It helps me to know exactly how the joint and bone pain is affecting everyone. Three more days to derm #2....then about a week or so for biopsy #3 results...then hopefully on the path to knowledge and relief!

Beverly :)

Title: Re: Tell me about the joint/bone pain, please!
Post by Joan on 12/04/11 at 13:53:11

Hope all the tests give you good news!

Title: Re: Tell me about the joint/bone pain, please!
Post by missybean on 12/05/11 at 08:38:21

Bev, I have TMEP to. But it is not systemic. I have systemic symptoms. I have esphogatis, gastritis, reflux, esphogeal errosion, hives, joint pain, bone pain and many other symptoms. But I just want to set your mind at ease, that many of us have all those things but it is not systemic masto for us. My bone and joint pain has been so bad that I have had to pull over while driving and I would cry and have to try and get a hold of myself, there has been times where I couldn't open a door, zip a zipper, change my babies diaper, pain in my feet so bad where I could barely walk. I'm 33 and when it get's bad like that I feel like I'm 80 years old. BUt one thing I have learned through these nice people on here is as soon as you feel the pain coming on take some pain meds because if you don't get a hold of that pain before it gets out of control it is harder and takes longer to get under control at a more tolerable level. My pain is usually in my feet, hands, knees and long bones too. I take ibuprofen and it works the best for me, it is a trigger for some masto patients but others can take fine. Also have you been able to trigger out your triggers? Dairy I find causes the bone pain for me. Gluten is another big one too. Another thing that makes my pain worse is being cold, having cold hands or feet so using hot pads or heated rice sacks which are so easy to make also help tremdously. Good luck on your appointment.
Melissa

Title: Re: Tell me about the joint/bone pain, please!
Post by Bfrey on 12/06/11 at 11:20:43

Melissa,
Thank you for your note. I'm a little confused....new to this, so bear with me :) If your TMEP is not systemic, how does the doctor explain the severe joint pain? It is something completely different from TMEP? For being so young at 33 there should be a reason why you have so much pain. Did you have a BMB to rule out systemic TMEP?
Thanks again,
Beverly

Title: Re: Tell me about the joint/bone pain, please!
Post by missybean on 12/06/11 at 16:27:40

Beverly, I'll try to explain the best I can....hopefully someone else with more experience will jump in. Mast cell degranulation releases those chemicals like histamine it also causes other inflammatory mediators like brandykinin, leokotrienes, prostaglandins, etc to be released. Mast cells are in your skin, lungs, intestinal tract, your nose, connective tissues,around blood vessells and nerve endings. All those different mediators can cause pain, inflammation, and other stuff. A lot of us have joint and bone pain and do not have systemic mastocytosis. I can understand how if mast cells are in connective tissue I can understand how we can experience joint pain but the bone pain....that is harder to explain. Maybe someone else can answer this.....is there mast cells in the bones, or is the long bone pain caused by inflammed tissue surrounding the bone that just makes it feel like it is the bone hurting when it is really the tissues? Anyone??? All I know is just when I think understand masto I realize I still have a ways to go. Lol!
I have not have a bone marrow biospy because my tryptase level was only 3.4 or 4.3 can't remember and have been told by a few doctors and others on here they generally don't do a bone marrow biopsy unless your tryptase is 20 or above. So I don't need one. My diagnoses came from my skin biopsy. TMEP is hard to diagnose and is often given as a differential diagnoses and clinical correlation is necessary. Is that what your skin biopsy came back as? A differential diagnoses of TMEP? That is what mine came back as and one doctor over looked it and another doc confirmed the TMEP. I have had full work ups for all autoimmune diseases and they are negative except for APS. But was diagnosed with fibro also.
Anyway I don't if this helped... hopefully some else will explain it better. Take care
Melissa

Title: Re: Tell me about the joint/bone pain, please!
Post by iamnotalone on 12/07/11 at 05:52:47

Melissa;
You sound like me! The bone/joint pain,etc. You (again) explained things very nicely as far as how the degranulaation relates to release of mediators & histamine! I got my TMEP diagnoses from a skin biopsy. My allergist wants me to have a BMB, to see if it IS systemic-even tho I have fairly normal tryptase levels. So- it seems each dr. is different in their conclusions... He gave me a script to "hang onto for when I get a bad flare for a tryptase reading. As murphy's law would have it, Ive been feeling more stabile lately (due to the ketotifen I wonder?, watching my diet,& taking an extra zantac?) IF there are mast cells in our bone marrow- it would explain the bone pain. I would swear my Bones ache, not just the muscles,etc:but- a massage therapist told me the pain I feel in my biceps,hips, hands etc could be the connective tissue/muscle fascia... All I know is I cant do half the stuff I used to!
we're all in this TOGETHER :)
lori

Title: Re: Tell me about the joint/bone pain, please!
Post by jbean on 12/07/11 at 08:49:04

I have had really bad joint pain lately. Wonder if it is because I am weaning off my gastrcrom?

On the other hand, I just moved recently and I am sure that has something to do with it as well!

Title: Re: Tell me about the joint/bone pain, please!
Post by Bfrey on 12/08/11 at 10:29:15

Well I'm back in limbo. I saw Dr. Roling from Univ. of PA Hospital yesterday. My hunch that my original dermatologist did not know what she was talking about proved correct. Dr. Roling was wonderful and has seen 100s of cases of TMEP and I feel like I am in good hands now. He took 3 biopsies (with no local anesthesia, just saline, which make them almost pain-free) and is sending them to his lab, but he promised if they don't give us an answer he'll find a way to get them to Dr. Castell's lab. He does not think I have TMEP. The fact that the Clobetesol cleared it up is one reason (derm #1 said "If the Clobestesol clears it up that means it is TMEP, and if the rash comes back it would mean the TMEP is severe and possible systemic"). Dr. Roling said Wrong Wrong Wrong!!! And this is what I learned from this board as well. I asked if he had another idea as to what the rash is and he doesn't; he's hoping for answers from the biopsies. Me too!! :) He said some rashes just can't ever be explained, and I can accept that. But I'll need to do some investigating about the bone pain if it's not TMEP; my gyn. gave me an Rx for Lyme testing (we are in prime Lyme territory in PA). I am so, so happy to have found this board and for the recommendations to get a second opinion. I will let everyone know if/when I get a dx!!
Many thanks!
Beverly

Title: Re: Tell me about the joint/bone pain, please!
Post by missybean on 12/08/11 at 15:04:55

Beverly, It sounds like you are in good hands! You are so lucky you have someone who has seen so many TMEP cases. Please share info with us that you learn from him about TMEP because us fellow TMEP'ers have a hard time finding doctors who understand how TMEP is a little different. I'm happy for you that you are in good hands.
Melissa

Title: Re: Tell me about the joint/bone pain, please!
Post by Vicky on 12/11/11 at 12:26:13

hi my name is Vicky and I was diagnose with indolent systemic mastocytosis in September, and about a month later i began to have swollen feet, knees knucles and hands and excruciateing pain of the hips. I am currently taking allegra d twice a day viatamin d 6000mg and 500mg of viatamin c. how should i go about talking to my doctors about this? Can this be a progression in my masto?

Title: Re: Tell me about the joint/bone pain, please!
Post by Joan on 12/11/11 at 17:04:04

I would suggest telling your doctor your symptoms. They might be due to the mastocytosis, or they might be from another problem. It sounds like inflammation, which can happen with ISM. The doctor probably will want to do blood tests to rule out other possible causes, such as auto-immune. It's unlikely to be progression of the masto, because you've had it so long. It rarely changes to a more aggressive form. People with cutaneous masto rarely have an aggressive form either.

You're on very little medicine compared to many ISM patients. Most of us take both H1 and H2 antihistamines, such as Allegra as well as Zantac or Pepcid (H2 antihistamines). There are other medicines that can be helpful, such as Singulair and/or anti-inflammatories, such as Aleve or aspirin. Gastrocrom is a medicine that stabilizes mast cells. I would be careful about taking a decongestant (the "D" in Allegra-D). Some people have increased symptoms with that. There are some nasal sprays, such as Nasalcrom, Astelin, and/or Veramyst that can help nasal congestion.

It's also possible that you're getting too much histamine through your diet. Have you seen the low histamine diet? It's very helpful in reducing symptoms, if they're being caused by too much histamine. Here is the link:

http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm

If you're taking 6000 mg. Vitamin D per day, that's a very, very large dose. It can have side effects at that level, so you might ask about that, too.

Just wondering where you are that you've found a doctor who is knowledgeable about SM? If you don't mind posting the name and city, it might help others.

Let us know how you're doing if you want to post again. We'd like to hear from you.

If you want to post again here after you talk with your doctor, we can give you more suggestions to help yourself feel better if he/she thinks it's masto causing it.

Title: Re: Tell me about the joint/bone pain, please!
Post by Bfrey on 12/13/11 at 12:10:06

Dr. Roling called me today and I do NOT have TMEP. He called this good news/bad news--good that I don't have TMEP, bad that he doesn't know what it is. He sent it to a specific lab technician familiar with TMEP so we would not get a false negative. The report said "hypersensitivity reaction" and no mast cells were found. He said it was NOT hives, as my first bx from the first derm reported. He said I could see an allergist but it would be like finding a needle in a haystack. He said to use the Clobetasol as needed (which he confirmed would NOT clear up TMEP as Derm #1 said) and that I could look into light treatment (lousy insurance, too expensive, not an option). I already use a special laundry detergent for those with sensitive skin and have not been able to think of anything at all I changed a year or so ago when the rash first showed up. I will see if I notice anything when I have flares, but in the past year the rash stays the same most of the time. I'm still glad I was able to see Dr. Roling and feel like although I don't have an answer, I did see a great doctor. Thank you all so much for your input!!
Beverly

Title: Re: Tell me about the joint/bone pain, please!
Post by phyre on 12/14/11 at 06:40:35

Hello Bfrey,

My flushing symptoms started when I was 42, so I thought they must have been hot flashes. I had a few other symptoms of low estrogen too. When I described them to my general doctor, she said they were not hot flashes. Months later after a skin biop, they found the abundance of mast cells and told me it was masto in April this year. (But I have had very painful allergy stuff going on for 19 years.

Do you have a lot of muscle spasms? Do you feel little muscles "flutter" for short periods under your skin? That thing in your foot could be that you have too much calcium and your muscles are tightening up. There needs to be a balance between calcium and magnesium in your body. I always keep a bottle of magnesium around. (500 mg) I only take one the first day I feel the symptoms. If I feel them the next day, I take another. Usually that is enough, maybe I will take one more the next day. Don't take magnesium without calcium too long. It will make your stool soft and it will flush all the calcium out of your body.

I don't know anything about the bone pain. Sorry.

Phyre

Title: Re: Tell me about the joint/bone pain, please!
Post by Vicky on 12/15/11 at 12:46:06

Joan i'm in Winston Salem, NC and i have been seeing DR.Dykewicz which is a allergist specialist i was referred to him be my oncologist, hes very fimiliar with matocytosis and other mast cell diorders . I actually went to see him today and he put me on predisone for five days,Singular, azelastine, ipratropium, plus he wants me to keep taking allegra d twice a day. He did a trypse,and some blood work to check for inflamation test and he refered me to a mast specialist which should get in contact with me tomorrow. Lord willing i'll get some kind of relief soon. Last night i woke up at 3am in pain and couldn't breath through my nose.

Title: Re: Tell me about the joint/bone pain, please!
Post by Joan on 12/15/11 at 17:32:07

Hi Vicky,

I'm wondering on what criteria you were diagnosed with SM, and by whom?

Your doctor sounds as though he knows something about mast cell disease, but it's a great idea to see an expert to be properly and thoroughly tested and a regimen of meds prescribed. All the meds you are taking are part of the treatment, but there are some things missing, which I hope a mast cell specialist will prescribe. The biggest one is an H2 antihistamine, such as Pepcid or Zantac. Most of us take one of those twice a day. (20 mg. Pepcid or 150Z mg. Zantac). They're over the counter now, so you can try them yourself without a Rx, but do ask your doctor if it's okay first.

The steroid should help if inflammation is causing your pain. Do check your diet and stay on the low histamine diet for at least a month to see if it helps. Keep a food and symptoms diary to see if any foods are causing you problems. Also record what you did that day so you can correlate that, too.

Do you know who the mastocytosis expert is that you will see? If you post the name here, perhaps someone will be able to comment. There's no point going to see anyone who isn't a true expert. Dr. Lawrence Afrin is one true expert who is in the southeast. I think he's at the U. of S. Carolina (MUSC) in the hematology dept.

Glad you're headed in the right direction! One more thing....try to keep your schedule light and your stress level as low as possible. Stress is often a trigger for problems.

Title: Re: Tell me about the joint/bone pain, please!
Post by Vicky on 12/16/11 at 09:47:24

Her name is DR. Mary Kanovich shes with hemotogy dept, my apt isn't till Febuary 6 ,2012.

Title: Re: Tell me about the joint/bone pain, please!
Post by Vicky on 12/16/11 at 10:00:57

I was first diagnosed with up by my dermatologist, he then did some blood work to check my trypae and sai the were really elevated and it was best to do a bone marrow biopsy to rule out Systemic although i didn't have any symtoms for systemic, my bone marrow biopsy done by Dr. Zekan came back Indolent Sytemic mastocytosis without the mutation kit. Since then i've seen my new pcp once who refereed me to my allergist Dr. dykewicz and i've just been seeing him, until now the want me to see Dr. kanovich the hemotologist.

Title: Re: Tell me about the joint/bone pain, please!
Post by Joan on 12/16/11 at 15:53:29

If it's at all possible, we usually recommend that patients, especially newly diagnosed, go to see a mast cell expert/researcher. This is such a rare diagnosis, and the vast majority of them don't have much of an idea of how to treat us. The doctor recommended to you is not a mast cell expert or researcher as far as I know.

The experts will be best able to help you become more stable and to put you on a regimen of meds that will control your symptoms. They'll do additional testing, if needed, to confirm the diagnosis and to rule out all other possible diagnoses, if they haven't already.

Then they'll send you home and work through you're doctor if any questions or problems arise. Dr. Cem Akin or Dr. Marianna Castells are excellent in Boston. There's also Dr. Afrin, whom I mentioned before. If you can't see a major expert due to financial difficulties or insurance, then I would see if any of your doctors would be willing to call the experts on your behalf. They often do phone consults with other doctors around the country.

It's a long time until February, and you're having some severe symptoms. Anyway, something to think about....

Title: Re: Tell me about the joint/bone pain, please!
Post by Vicky on 12/20/11 at 00:27:19

That would be wonderful as i can can use all the help i can get.

Title: Re: Tell me about the joint/bone pain, please!
Post by dciolli on 01/05/12 at 09:21:12

wow, I am SO glad I found this forum! Looking and reading all this makes me feel like I am SO NOT ALONE!! I've also KNOWN I'm NOT NUTS! I have said OVER and OVER again, that ALL the "Diagnosis" I have are ALL CONNECTED! After finding this forum and reading all that you ALL have been through, I know I was right and Thankfully I DID have a Gastroenterologist that back in 2009 KNEW A LOT more than Most Other dr's! BUT I DIDN'T listen to her! I did NOT take the BIG BOX of gastrocrohm she gave me because I'd just been through another "set of Scopes" endo and colon, and also swallowed that Camera Pill, and even though it all came back with what we already knew, the esphogeal problems I'd even forgot about until reading here, because she told me I needed to be on nexium rest of life, in hospital had found out back in 2005 they'd given me liquid Protonix and wanted me to be ON THAT TOO for life, for fear of more serious erosion...but between the HOLY INTESTINES and esphogus, and asthma and skin rashes THAT THANKFULLY for me GO away....I am Blessed there....my Main problems are the severe asthma problems, the severe pain, that seems everywhere BUT does feel more concentrated on my feet, ankles, and tops of legs but sometimes radiates to thighs, and my right hip used to hurt so bad I had thought for years...had to be BONE cancer...the pain was where I couldn't even stand for a Finger to TOUCH it, that now comes and goes, but that HOUSE Episode where the guy had masto? That made me THINK about ALL the syptoms including the running into a wall and feeling like I broke my arm...the pain that goes all over the body can last for weeks or months before it subsides, there is SO much on this forum to RELATE to, I certainly pray someday they'll find out what Really is going on for everyone here and all the others who are constantly being MIS-DIAGNOSED with everything from Eppstein Barr to CHRONIC Fatigue SYNDROME to Fibromyalgia, to? Lord knows what ELSE they'll Call it because NONE of these as far as I know have a cure...even the celiac my dr said the GI dr, that the real and ONLY test for that is when you have an endoscopy and they take a piece and look under the microscope..so MANY different "names" of diseases and syndromes and yet NO CURES?? So many also Seem to MIMIC more than ONE of these...just like you who said you have 2 auto-immune....I really wonder if ALL of this IS auto-immune? Somehow I believe this is all Connected...and pardon the pun on the conenctive...but what test can we get for those mass cells to show up in tissue? Should I go back to my gastro dr who IS the one who suggested I take gastrocrohm way back in 2009? Or should I go to primary and tell him to look and he'll clearly see ALL the things are related to my different diagnoses? He's a good one he's also the one who has tested my ana a bunch and also did the crp, for inflammation, and also the A1 tryptan deficiency? I think the spelling there is iffy? again, Thank You ALL for posting here. Debbie Ciolli