Bones aching

[calypso]

OK, my bones hurt. Everywhere. What does that mean? It's been going on to some degree for about three months, but lately it's constant and getting much worse. I literally feel like my bones are about to break when I get up to walk or bend down to pick something up. It's a very dull ache.

Please let me know if this is a "me too" thing or if I am completely screwy.

Amy

[blackwolf]

you aren't completely nuts, "screwy", mabey. i have on several occasions thought my very bones were going to catch on fire and i would just go up in flames, the pain was deep inside. mostly in my legs (thighs), but sometimes it will hit me in my arms, from just below my elbows to about 2 inches above my wrists. since i started the neurontin this still happens but not quite so bad as before. how long does it last for you? it rarely goes on for more than a few hours, but the are REALLY long hours.

i like cold for this pain. it does better than heat and i haven't found any really good med to take.

opus88 had said something about asprin, if it works for you great, i take it every day and don't get the releaf that many do from the dosage for pain (2-3 325mgs).

one really stupid question? do you stretch? i do it every day, several times a day. they are the stretches i was given by pt the last time thru the program.

good luck, blackwolf

[Merrill]

I would've said the flu, Amy, but thought differently when I read that it's been going on awhile. I agree that trying ibuprofen or aspirin or some such might be a good idea. I'm sorry you feel this way; I only get that feeling when I'm sick with something else.

take good care,

m

[Gena]

I get achy bones too, but mine come in flare ups - I don't have constant aches. I notice it if I've been eating bad (like sugary stuff) for a few days. It always starts an infalmmatory process in my body and I get stiff and sore all over. I find that a warm bath with epsom salts really helps - even for just a few minutes. And Blackwolf's suggestion of stretching is a good one. That helps me too.

You may want to try a combination MSM/glucosamine/chondroitin supplement along with some calcium if you're not already doing this. These are great for bones and joints and MSM provides some pain relief as well.

To be on the safe side, you may want to mention this pain to your doctor. He/She could run some tests and possibly do a bone density scan as well.

Hope you find some relief very soon.

[MomtoGiuliana]

calypso

I have had flare-ups of unepxlained aching--and yes, that feeling like my bones might be breaking. It has gotten better over time. It peaked in intensity in my mid-20's. No diagnosis (of course). It was sometimes accompanied by a headache. Ibuprofen helped a great deal, but I do remember feeling really rotten while in one of these flare-ups. My first flare-up started in Africa, and when I finally got to a doctor after 2 weeks of it, he just said it was a virus--he went further to speculate that it was contracted due to close contact with livestock. Anyway, it continued off and on for years. During this time I also had POTS symptoms, but didn't know that was what was going on. To this day, I don't know what the heck this was--the last flare up I got was about 3 years ago. I do wonder if it is just another facet of POTS.

I hope you can get some relief.

Katherine

[Miriam Poorman-Knox]

I too have the acheey breaky bones. Went to my doc, she said its part of pots. The last time I had it basd was in my paws and shoulder, couldn't work them. Make sure pcp knows. And see what they offer. Warm baths with a space jheater are nice, not the same as a hot bath, but still. Miriam

[Guest tearose]

Amy, me too! I kinda get the dull hurting more like aching in my body.

I was wondering if I could explain the aching though...sometimes I am not sure if it is my bones, my muscles or lately I wondered if it is the nerves. I know for sure that it is one of those "comes and goes" issues. Would you please do me a favor Amy (since I think we have other similar muscle issues) could you focus on where the pain comes from and explain it more to me?

I am clear mine is not in my joints but in the places in between. Like from my wrist to my elbow, from my ankle to my hip...I just feel hollow and not able to understand if it is my muscle, bones or nerves acting up.

I have found a few things that take the edge off for me:a warm bath while drinking cold water, or a tiny children's dose of tylenol and also rest. My spells seem to last between 2-6 hours. And also in clusters of days. Then they go away as mysteriously as they came.

A good thing too is that although this aching may keep me from exercising, exercise does not bring them on or make them worse. I am trying to be faithful to my new loose my caboose exercise plan.

I hope you can find relief Amy, constant aches are very wearing.

thinking of you, tearose

[Dawg Tired]

I have had the same problem. Bad Doctor sent me to a neurologist and I was told by Bad Neuro that it was all in my head. (Looks like I would have a REALLY big head by now with all the stuff that's supposedly in there!) But Good Doctor told me that it is all part of this - like skin pain. I have carefully cut ALL artificial sweetners - even Stevia - out of my diet and after a few weeks things improved. I still have flare-ups that last a few days but not as bad.

[kristinp29]

Amy,

You're not alone. I had the bone pain, too. Is it worse for you in your joints?

Tearose--I'm almost positive that you're right. It's not muscles or bones, but the nerves that run through them. It makes sense, considering it's our nerves that our damaged.

I know I say "I've had that, too" a lot, everyone, but to be honest, I have had nearly every symptom you can think of. Probably the only thing I never had was fainting. So, for those of you who faint--you've got one on me. *giggle*

~Kristin

[briarrose]

I had to chime in.

I have at times had the bone pain. In December of 2002 was my worst and I was on and off work for 6 weeks because the pain was so much that I just laid on the couch and whined. It killed me to get up and go to the bathroom. They finally put me on pain killers to get through it, which just took the edge off.

The bone pain is different from the joint or muscle pain that I experience and let me tell you, I can tell the difference between each one.

Besides Neurontin I haven't found anything else to be helpful. They have run tests on me that were inconclusive. My sed rate was elevated but they past it off as just mildly so and blah blah blah.

Hang in there, this too shall pass. Be tough and know that we are all here for you.

[calypso]

Thanks, all. Tearose, the pain is like you describe -- not joint pain, but the bones all over ... like my finger bones and feet bones ache, and my bones in my lower legs. It's very odd. I know it can mean a ton of things, yet it seems for me that even when I drop a ton of weight and my muscles waste away, that even THAT doesn't "mean" anything diagnostically speaking.

Sorry, I am cranky today. I spent nearly 2 hours waiting to see this immunologist so that he could rule out a chronic immune deficiency in me, only for the whole thing to have been a waste of time because I don't really get sick all that often. Or at least not often enough for it to be a true immune system problem. But regardless, he STILL wants me to have my T-cell function studied by injecting me with a Pneumovax (pneumonia vaccine) and drawing blood a few weeks later to see how my T-cells respond. I asked if this was necessary, considering he said it was unlikely that he could even do anything about it if I did have a normal response. And he still wants me to have it.

I hate getting vaccines because I suspect that part of the reason I have POTS is because I got a rubella vaccine hours before this all started. It's a double-edged sword when you go to the doctor, I tell you!

Amy

[lalalisa]

I've had this also. I think it was the worst though when I had an active mono (EBV) infection.

(If it doesn't go away I would possibly get some blood work, just a suggestion.)

I hope this improves for you!

Lisa

[CaitlinRose]

I have terrible bone pain too. It feels like white hot pain deep within the bone. I haven't found any meds that help it, it gets so bad I can't even move or breathe. Does anoyone know what causes the bone pain? Is there any info you could direct me to or do you know of a doctor who is fimilliar with this aspect of dysautonomia?My dysautonomia doctor had never heard of this symptom and didn't believe me and went the psychological route. Any information anyone has would be great. Thanks!

God bless,

Caitlin

[opus88]

I certainly wouldn't call mine severe, but I have had it. Many times I can't be sure if it is bone or muscle or ligament or nerve or what. I just know it aches. Sometimes it's more specific in its location, sometimes more generalized. I never know where it comes from, why it started or how long it will be with me. But I have found over the past few months that dairy products are a huge culprit for my discomfort that appears particularly in the hands and feet. I do know that arthritis symptoms of all types can be greatly lessened by 100 percent elimination of dairy products, so maybe some of us have that going on, too . . . ?

[Miriam Poorman-Knox]

Opus,

I justreturned from mayo, and had the sweat test. Dr. Low said that the pain in my feet and hands is neuropothy-caused by the loss of the ability to sweat in my feet, hands. I have pain also. It 's not always there but every day for some. I get neurontin next week. Miriam

[opus88]

Miriam,

CAUSED by loss of sweating ability? I wonder how that can cause pain.

Neuropathy is degenerative. Did your doctor give you any indication of how much damage has occurred? Was the sweat test the only way they diagnosed it? (There is more than one possible cause for lack of sweating. It just seems odd that such a test would result in a neuropathy diagnosis.) My hands and feet can sweat, so I'm wondering if there was something else in your tests that led them to that conclusion.

If you have any more info on that subject that you could share, I'd certainly appreciate it!

[Miriam Poorman-Knox]

My neurologist noticed that certain places in my feet were numb, while others painful. Not long ago about 2 years- I couldn't even take my shoes off in docs office they were so sweatty and smelly permeated the whole office My feet have been much MUCH more noticably cold and painful since the change from metroperol to inderal. and change in Synthroid. This has been a process.

Miriam

[DawnA]

Wow Iam reading this right now as my bones are just aching sooo soo badly. Does anyone find increased activity makes this worse? This is interesting that soo many of us have this. I went out for a little while today and my legs hurt so bad when I walked, I felt like crying. Does anyone else get this?

Maybe I should try neurotin too.

Dawn

[opus88]

Miriam,

Ugh. That must be really tough to deal with, especially for walking. Sorry you have to go through that!

I appreciate the added info. It doesn't sound like that's the same thing I have going on, since I don't have numbness, just achiness and discomfort. My feet are almost always cold, sometimes normal, and rarely too warm - but they can easily sweat (sometimes a cold sweat) in shoes that don't breathe well.

I hope you can find some relief soon!

[seaboardbc]

Bones are always aching somewhee in my body, though more often in my back, neck and arms. You might want to read my post about osteoporosis.

Bren

[morgan617]

I have started calling myself the tin man as my joints freeze totally up if I don't move them. So I decided to try the Yaz exercises on this site. I did them faithfully for 6 weeks and I could barely move the pain just got worse and worse. When I go to bed at night sometimes I cry the pain is so bad. Fot the 2nd time in 20 years, I asked my doctor for something, it has gotten so bad. I am trying physical therapy one more time, although for some reason, it always seems to make me worse. I feel awful after it. Mine is bones, but mostly it feels like everything is just completely locked up and trying to unlock it is excrutiating. I hate my body. morgan