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mastocytosis

methiffany
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My name is JulieAnn and I was Dx w/ mastocytosis about two years ago. Recently I have been experiencing major lower leg pain. It is only from the knees down and is a burning all consuming pain. Nothing seems to help decrease the discomfort. My legs feel weak and I am afraid of falling.
My immunologist is great, but he thinks this may be a 2ndary problem not related to Masto. I wanted to get the opinion of fellow masto sufferers. Has anyone experienced something like this? Suggestions?
Thank You.

Explore topics in this discussion:

Exercise Cancer Tylenol Skelaxin Motrin Cyclobenzaprine Peripheral neuropathy Mastocytosis Flexeril Xanax Advil Diabetes Pain Lyrica Neurontin Heart attack Percocet

16 replies

mph

Poetessa, I will have to have my son "chat" with you. Sounds so similar. The bone pain in his left knee is excruciating. He has 2 herniated discs for no reason, other than SM? Also osteopenia/porosis. Microfractures also. Pain meds, yes. Cannot use NSAID's because it causes reactions. How old were you when this started? How did it begin? His was fevers & vomitting, every 30-50 days. It only got worse. So glad you are sharing.

Poetessa

As for bone pain!!! This is my biggest issue with SM!!!
For me it's a constant but it's every changing and I have unique flares that are out of control painful and nothing but IV dilaudid (sp?) helps but by then I am on the verge of going into a coma anyway!!
My very worst pain is in my neck and it sneaks up on me, it comes on sudden and can last a month with no break. It seems that something is broken in one of the vertibrae and I am unable to move whatsoever and must wear a neck brace to keep it stable. The other pains are in my lower back which stop me from doing any kind of walking or standing around... there goes shopping!! That pain can be very bad and it stops me from getting out of bed. Then the pain in my shoulders too is bad on and off. Also I identify with when I first get up I look 90 years old and am all stiff and sore until I take 5 or 6 steps and all my joints feel nasty. That is getting worse. I am losing mobility in some of my joints and doing exercise makes it worse, even stretching sometimes aggravates it. And I can't go for massages!!!! Who here can go for massages without all hell breaking loose? I am so bummed about that!! Nor can I see an osteopath!!
Also the pain my chest can be very very bad where I feel like I'm having a heart attack but no... it's my bones and it usually goes right through to the spine.
And the list goes on and on!!! Now I wonder if the bone pain has any bearing on what involvement the bone marrow is at??? Or is it not related?? Just curious.
I take percacette, oxicontin, flexeril, for the pain and it now does very little unless the pain is not too bad. They don't know what to do anymore about it when it goes out of control. I'm allergic to NSAID's to they are out! Heat can help and or ice. Oh pain patches do wonders, the Lidocane patches have helped quite well and a tens unit too.
Wishing everyone pain free days!!!
Leslie

masto4acure

I have found Gabitril, an anticonvulsant, to be very helpful for all of my masto pain. It is similar to Neurontin, which was prescribed to my husband for nerve pain related to his diabetes. I also take Xanax and Motrin (NSAID) to help w/ the pain. Best of luck to you! Julia

Poetessa

Hi JulieAnn, so sorry to hear about your crazy burning leg pain, isn't masto a barrel of laughs! I was diagnosed a year and a half ago and everyday is an adventure!
As we speak my legs look like I was broiling in the sun all day and you could cook an egg on them but rarely does it flare to the point where it's really painful, unlike the rest of my body! Though when I read your post I realized that I do have lower leg pain as well but it gets put on the back burner, no pun intended, when other parts hurt way more. Don't get me started!! I do however totally agree withe the lidocane patches, I discovered them this winter at NIH and couldn't believe no one recommended them sooner! They work wonders for some of the muscle/bone pain but not if it's too serious, then nothing works!
Now if I could only find a way to get them into Canada I'll be in business.
And I am all too familiar with frozen peas, spinach, broccoli etc... I wear more food than I eat these days!! I wish you tons of luck with finding a solution, I know how frustrating it can be when no one has a clue what's going on!
Wishing you cool and pain free days ahead!
Leslie

MTPJunior

Hi,

That is also ONE of the sympthons that I have with both my legs, also from the knees down.

The burning also comes and goes.
I am currently seeing doctors at Sloan Memorial Cancer Center in NY.

I have many many other sympthons that none of the prescriptions I am taking seem to help.

Muggebrs

Yes first it was mostly joint painbut 2 yrs later i also get major bone pain all my joints really hurt on arms and legs they swell to now the main bone pain it from the knee to the ankle straight done the shin, also they can feel real weak like jelly dosen't last long but can happen, I think everyone with SM is so different that's what makes it so hard for DR, but reading this site seems that people see an Ocology DR I see one tomorrow my allergist is sending me to him he is the one who diagnosed me withSm good luck

Rose1932

I have masto and also have neuropathy in my feet. Blamed it on my diabetes (which is well-controlled) but never associated it with masto. I also use ice packs, not because my hematologist said to it was just wanting to cool the fire.

Denmark

Hi there - Denmark is calling! I been reading you letters, getting all worm inside! I also heard fro Sharon and Wanda, such great girls, and helpfull - its so nice in here! Thank you very much! To Wanda - i just went ti Dublin Ireland - i bougth you postcards, i will send them soon! What a beautifull country!! Thanks o everyone....

Masto since 03 - Charlotte

Donna01

Holly,
My pain is mostly neck, shoulder and upper arm pain. The arm pain feels more like intense sore muscle pain that just won't go away. I have had some luck with Skelaxin (1/2 of 800 milligram tablet), and with Flexeril. I've heard of others who had side effects from both. Skelaxin is the milder and Flexeril will put me to sleep. I have taken both with Tylenol or Advil. My MD is learning as we go along, but has been very good at helping me work through the symptoms and research as new symptoms pop up.

holly101

Sharon -
Thanks for the reply to my e-mail about bone pain. Any time I would bring this up to my doctors, they didn't know what to say. In fact, I am feeling so unique that I'm almost afraid to go to the doctor or urgent care. I suppose I will discuss my questions to my family practice doctor in April, 2008 and go from there. But, I feel more comfortable to know that there are other masto patients that have the bone pain or unexplained nerve pain.

Sometimes I feel like my body is 150 yrs old. I'll get up from a chair or couch and have to walk a few steps hunched over until my legs and back feels oiled up enough to straighten out. Luckily this doesn't happen every day (just about 1 wk a month).

Sharon

Jill,
I am still using the lidocaine gell for my "hot iron" on my feet. It works well enough for me that I can sleep at night, although I have had a few nights where my bare feet have gotten very friendly with the stone tile in the downstairs bathroom (its on the concrete slab - so in the winter the stone is very cold - we have to keep a rug on it when I am not trying to freeze my feet on it).

Depending on which Doc I am speaking with, we are calling the other pain you are talking about bone pain or Fibro Myalgia (the Rhuematologist prefers Fibro) - both docs are calling them secondary to masto. I find that Advil takes the edge off, but I also find that after a few hours of the pain I am pretty worn out.

There is something about this particular pain for me that does tend to knock me out for a few days. Time to hit the bed with the ipod and some good reading material. For me its not like regular pain like from a broken bone or something - where it just hurts and you are miserable from the pain. For me its a pain that has some other whole kind of discomfort to it - maybe its the thing they call "brain fog", but it really puts me out.

I haven't found anything that really works well for this pain, but I am sure on the lookout for something. I'll let you know if I find anything.

Sharon

holly101

My name is Jill and I was diagn. with systemic mastocytosis in 1994. I previously had UP since 9 mo. old. About every few months I will get a stretch of 3-5 days of terrible bone pains: shoulder joint, mid upper arm, knees, and mid thighs. It's sometimes excruciating & very disabling. I was prescribed Cyclobenzaprine (sp?) which I use rarely if I just can't take the pain. Otherwise a few Advils help. I have had the burning pain Julieann was speaking of although it's just on the tops of my feet. There's a large red patch and it feels like a hot iron is on my feet. These sensations have not gone up my legs however. I just started noticing this problem about 2 years ago.

I'm wondering if anyone else has had the aching, throbbing pains in the shoulder joints, mid upper arms, knees or thighs. I've mentioned it to my doctors at the NIH and they think it could be bone pain.

Thank you.

methiffany

I appreiciate the info. I just started taking Lyrica- no help yet, and I have some lidoderm patches. Right now percocet is "helping" the best. At least I am able to go to work.

I have my prickly itching under control at the moment. And, my gut is not mad at me right now. So, it just figures that my legs are pissssssssssssed. Can't everyone just get along?

Thnks everyone for the support.

wanda

Hi Julieann,

I see my friend Sharon answered your question but I thought I would add my 2 cents worth. I Have a lot of bone pain, especially in my legs,hips and feet. Some days are better than others. My Doc, who is a Masto researcher says bones actually have no nerves so it is really not the bone that is hurting rather the mast cells live inside the bone in the marrow and the pain is orginating from there. Either way it hurts!!! and it feels like the bone!! Some days even my fingers hurt and my right elbow or my neck, and it goes on and on. Most of us do have the bone/joint/muscle pain we have to live with. I take Aleave as opposed to the rx the doc gave me.When I hurt really bad, the only thing that will help is kicking back on the couch and doing nothing for hours. If I do even half of what a normal person does in a day I would be down for the count for days!! I hope this helps you some. To confuse even more, I just had a bone density scan and my bones are in excellant shape for my age(59) So, go figure?????
Wanda Tesch
Houston,Tx
SM

methiffany

Thank you so much for replying to my question. Yes, it does sound like we are decribing the same things. I have printed off your answer and am going to take it straight to my doctor so that we can start on your suggestions. I am not looking forwad to taking yet another pill, but I just do not want to walk anymore. I did go to a neurologist once, but she said that I had Restless Leg Syndrom and put me on Quinine! Boy, did that ever cause a major reaction~!!! I do not think that she understood Mastocytosis, but there are many other nuerologists out there. :)

Thank You again. I will let you know how things go.

Sharon

Hi JulieAnn,
I am Sharon, mastocytosis diagnosed in 1994. I am wondering if you are talking about peripheral neuropathy - it is considered a symptom of mastocytosis according to www.tmsforacure.org , but is not typically treated with the usual masto meds - if that is what you are experiencing you will likely need a good understanding neurologist who is willing to work with a very complex patient (that is what I needed anyway).
I have the pain that I think you are describing - it feels as though I am standing literally in a fire. The flames stop at my knees - though they may touch my hands just a bit. This sensation can come with or without other masto symptoms. Frequently my feet - sometimes my hands, will turn red, perhaps even purple during one of these episodes. And the pain is excruciating - not just standing on something hot, but like I am standing in a fire, and just cuts off at the knees.

On some of the masto web sites I have read of success in treating this with Lyrica - which I reacted to with a major masto flair - but many people do well on it. Lyrica is a drug that was developed to treat diabetic neuropathy - which is most similar to the neuropathy we get.

Since I couldn't take Lyrica and we were afraid to try other meds in that class - I have a couple of other remedies that have worked for me & I am still working with my neuro Doc looking for other solutions. Its no fun to be having a good health day and my feet catch on fire, not to mention when I am having a bad day anyway and we add that symptom. Fighting to breath and my feet are on fire.
*Neuro Doc prescribed lidocaine patches for my feet - works actually, but I have to wear socks over the lidocaine patches and don't relish putting on socks "over the fire."
*Ice pack on the feet, in an emergency anything in the freezer that is frozen will work. Frozen peas in a bag rarely make it to the table at my house - my second favorite remedy.
*Put the feet in a bucket of ice - great travel, hotel remedy
*Lidocaine gel - available without a prescription - the sunburn relief stuff, usually a blend of lidocaine and aloe - heavy slimey coat on my feet and rub a lighter coat all the way to my knees.
Stinky answer to problem, but works great - this is actually the one I use most.
*The Body Shop and a few other beauty cream stores make a travel size foot spray with lidocaine that is great for on the go - I try to avoid ones that contain alcohol as topical alcolhol can trigger other problems for me - I keep it in my purse when I am away from home always.
*Ok - this is going to sound crazy, but it works for me. I wear shoes that breath well, sandles and flip flops as much as I can, or canvas sneakers with cotton socks - I cut the toes out of my socks - crazy sounding, yes, but for some reason it seems to help.
*In winter I stand for a few minutes outside on the sidewalk barefoot, or on the ceramic tile barefoot. (this one and the one above it are both tips from a fellow peripheral neuropathy sufferer - I thought he was out of his mind when he suggested them)
I hope you can find something in my remedies that will help you, but ultimately I do believe you are going to need to find a good neuro Doc. Also, before trying the lidocaine remedies - and this may be obvious to you, but I frequently miss the obvious - are you sure that lidocaine doesn't trigger your masto? You may want to try a test patch first.
If it turns out to be peripheral neuropathy, this symptom will be about treating angry nerves, instead of treating angry mast cells, which for me required a little bit different way of thinking. I am accustomed to attending to angry mast cells - angry nerves so far freezing them or numbing them is working, but its a very different thought process.
Also, since peripheral neuropathy is not as rare as masto - its apparently a component of other illnesses as well - there are some really good books on it, and neuro docs who treat diabetics are going to have lots of information on this symptom - unlike so many of our other symptoms.
All of the best to you,
Sharon

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