My bones hurt

soul2bleed
  • By soul2bleed · December 18, 2008 at 11:39 am · 31 replies
  • In Living with sarcoidosis
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Is this normal? From my elbows, to my wrists, hands, knees, shins, ankels, feet, toes, etc. The actual bones ache. I'm on 60 mg. of Prednisone. Will this cause it. Tylenol does nothing. Neither does Motrin. And I am very sensitive to other pain meds.

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31 replies   

shadowtoonces (Inactive)
  • By shadowtoonces (Inactive)
  • Reply 224974
  • December 18, 2008 at 2:55 pm
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I can't answer about the joint pain, I don't have it in my bones but there's alot on this site that do. I have pain from lymph node pressure so I have the pain around my heart and lungs and am on prednisone is well. I don't think any question can be answered with this disease and have the word "normal" anywhere near it! I take Vicodin for my pain, and with those there is always the risk of addiction and tolerance as someone mentioned above and then gotta be careful driving on that stuff. I don't drive on it, I'm a spacecase anyways! But I will say a prayer for you, and I'm sure the Sarcoidians with the joint pain will take it from here...............take care, Dawn

soul2bleed

It's not "joint" pain. It's the bones. It is really weird and painful. All of a sudden I will get this bone deep ache and it takes my breathe.

Smileyface

I am also in the dark about what to tell you. Have you asked your sarc doctor if you could have sarcoidosis in my bone marrow? I don't know what else to tell you.
SORRY

Tawney

Hi

YES in capital letters to the aching bones in EXACTLY the same places. It waxes and wanes but has the potential to bring me to my knees, especially the shin bone pains. Long before I'd heard of sarcoidosis or D tests and such, I had been asking my immunologist if he was sure I couldn't have rickets because of how strong these pains were. The shin pains go up and down in strength but at the worst times, as well as the ache, I get waves of pain, slow waves that go upwards from my feet to my knees. They're the pains that really stop me in my tracks. Sometimes the bones are tender to the touch, sometimes not so much. I tried to describe them as pains that come from deep inside the bone, inside out pains, almost like the bones were being eaten away from the insides. This just earned me strange looks. You're right, regular painkillers don't touch on that pain. I'm not on Prednisone, so Pred can't be causing the pain for me. But believe me, I know just what you're describing.

sarcoidbuddies

oh my goodness the[PAIN] please bring this up with your doc and don't be afraid to ask for a pain med. the otc pain meds as far as i'm concerned will not take it away , sometimes i have to take either vicodin or percocet for the brake through pain a lot of times i believe we have to do something to take away the horrible pain to get the body back on track so it can have a rest and it sure seems like you need this , a day with either some pain gone or hopefully it'll go away for awhile so you can give yourself a brake. take care and god bless

gonenatural

I have the worse shin pains and they associate it with EN but I think it is so much more then that since I have had it longer then EN and it is getting worse. When I go out on Sat. I have to beg my friend to take me home cause I can not stand on more moment or take one more step. Most places don't have scooters and he will not push me in a wheel chair, no one will.
I have yet to find a pain pill that does work for this pain. I do have bone marrow dying in 1 shin and it is unknown why and drs don't care.
I've had unknown knee pain for 35 yrs and now I need a double knee replacement.
I do have bone pain all over but I also have severe arthritis that started in my 20's.
So I can see between me and others we are far from alone. Now if drs would only believe.

allenk007

Hey,
My bones hurt too. A lot, actually. My rheumatologist told me this is a side effect (albeit rare) from the prednisone - something about the prednisone sucking up the calcium. Hence, I should try to eat calcium rich foods. To that, I say "bullspit". I can eat all the calcium-rich stuff in the world, and my bones still hurt. However, I did find that yoga helps. Even going to a class once per week or working with a video has proved extremely helpful. The calming sensations of the integrated meditation mixed the natural rise in seratonin levels from physical exertion can do wonders. You might want to try it. I hope you feel better. And definitely talk to your doctor, maybe he/she could also prescribe you something to help - if the pain is keeping you from sleeping or enjoying your life, then steps should definitely be taken.

Krissy

Have you had a scan to check your bones? I have pain in the same areas as you. The difference being mine feels more muscular than bone pain.

jventrano

I have sarcs in the lungs and was diagnosed in April with it through out my spine and bone marrow. The pain in my bones is so intense that I have to take vicodin and a muscle relaxer just to get some relief. I have pain in my knees, ankles, arms, and just about everywhere else. I have been on prednisone for 8 months at 20mgs and the pain and agony still persists. I went 2 days ago for my third MRI and CT scan and am now seeing a new doc at I.U. Med Center in Indianapolis. He is hopeful that we can get this under control with possibly a different med or combination of meds.
I hope you go and see your doc some more and get him to try anything and everything. This disease is a painful one already so we all can easily sympathize with you. Hang in there and please let us know what happens after your next visit.
Good luck to you and please have a Merry Christmas and hopefully a painless one.

Donna5

I also have bone pain, it feels like my elbows are being pulled apart, when it's its worst I can't even pick up a coffee cup, have it in my knees and hip too. I went to see an RA Dr. and he is going to try Remicade with me. I tested positive for RA but 2 Dr.s has said it is a false positive caused from Sarc. I had a bone denisity test done and they said my bones were ok.. but I have polycythemia vera too, that is where your bone marrow produces mutilated red blood cells. My blood is very thick and needs to be drained. I got a question for u all... I am 54 and probably going thru menopause but do any of u get like a "chill" feeling in your body and it just runs up and down it? Chill is the best way I know to decribe it altho it doesn't make me cold, it could be called a tingling sensation too I guess. It really isn't that much of a bother but I am curious what it is and why? It happens all the time. I also get the awfulest hot flashes, now these are a real bother, because some of them practically smother me to death. I can't belive this is a regular hot flash that just goes along with menopause. I thought perhaps it was a reaction to me being on so much meds and they weren't mixing well. I was on hydrocort and pred too. I just quit the hydrocort and cut down my pred to 10 mg a day. It does seem to be some better. I would be so hot I couldn't breathe and felt near to passing out . This was happening several times a day. Does anyone else have this problem? T Y Donna

soul2bleed

Right now I only see a family doctor. We've done an MRI due to word problems and a lung function test (it was okay), heart stress test (showed pvc's with pain at rest). That's it so far. The bone pain will just sort of flash in different spots. Except for the elbows. That's pretty constant. I'm going in January to see my Pulm. Hopefully he will be a little more insightful. I'm currently taking 60mg of Pred. But I see no improvement (2 weeks). Except my mania and insomnia is back full force. Yeah me. I'm making an appt. tomorrow to see my doc. Maybe I can drop the dose of the Pred. And get something for sleeping.

bkf

I am a very new member and am so stunned to know that someone else has the same achy bones. I was told I had bone cancer and after lots of tests I was diagnoised with sacoid. It is in my bones. I have grandulomas everywhere. On my spine,in my legs, my arms,Etc. My doctor said I had a 30 percent loss of capacity in my lungs but no grandulomas there. He said prednisone only makes bone sarcoid worse. He also said this was the rarest type of sarcoidosis. For the time being I am on two Aleve every 6 hours. It takes a few days for this to start helping but it is the only way I get relief. I wish you a great Christmas and will say a prayer for all of us.

april4
  • By april4
  • Reply 229994 · In reply to 229933 by bkf
  • December 23, 2008 at 6:00 am
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Im curious to know more about your diagnosis. I was diagnosed with sarcoidosis last year. My left should/arm keeps hurting and going blue. They thought I had RSD however they have found a large bone tumor and are concerned about bone cancer. They are making me see a bone oncologist after Christmas.

fishmom

I have been treated for Osseous (Bone) Sarcoidosis for 2 years now. I have been on Remicade and Methotrexate. It has "healed" the bones, but I have to stay on it or the lesions will come back. I do have other Sarc issues but at least this helped with holes in my bones. Ask your Dr.s to see if it would work for you. The Dr. who consulted with my Dr.s was Dr. Om Sharma at USC in LA. Good Luck

CathyF

That is so weird. I am having a biopsy of my neck lymph nodes this weekend to see if I have sarc, but throughout this tumultuous journey to see what the heck is wrong with me, I have been put on prednisone, which in fact, brought me to my knees with bone pain. During one of the spells I was in the hospital on morphene for the pain. How do they diagnose bone sarcoid? I have had mysterious bone pain for years.

bkf
  • By bkf
  • Reply 231389 · In reply to 229994 by april4
  • December 25, 2008 at 6:32 pm
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Especially April In the begining of all my tests etc. my pain started in my left arm and shoulder.. They then did ct,mri off that area,said they found a tumor. Bone scanned me and and said I had other tumors. They put me thru hell trying to find the origin of the cancer. Usually bone cancer is a metastsis from somewhere else in you body. They found nothing after months of expensive tests and lots of pain. They can do a bone marrow biopsy to see if there is cancer in your body and/or bloodwork "flags" cancer. Please tell your doctor to go to these things first. It will save you lots of money and lots of pain. If you are on steroids it will make your bones hurt more. Are you under the care of a pulmonary specialist? Please do not be scared. It may just be this scarcoidosis. I will pray for you and Merry Christmas

TerClark

Oh, yes! I have this. I'm always telling people it's not arthritis. The pain runs the length of the bones, down deep and it can really hurt. My hands and feet are the usual culprits, but if it's really damp and cold all my bones hurt. And I should add that I'm not taking prednisone so I know it's the sarc and not meds.

belikelynn

With me, they ruled it as Fibromyalgia and put me on Neurotin (generic for Lyrica). It still does not help and me telling them that seems to not get any results. My shins are very painful to touch and even down to each toe. The pain can be very unbearable. I too take Vicodin to try to ease the pain but it doesn't. I go back to the Rheumatologist in January to see what is the next course of action. I will keep you all informed.
Lynn

bmaz

belikelynn, I am pretty sure that Neurontin and Lyrica are NOT the same medication. Lyrica ( for me anyway) works much better than neuronton. Gabapentin is the generic for nuerontin. If you are on Neurontin and it is not working, ask your doc to switch you to Lyrica. Lyrica is more expensive, though. My insurance co. will only pay for Lyrica after I have tried Nuerontin without success. I have had semi success with nuerontin, so I am staying with it at the time being. However, I am also taking Pamelor. Together these work for nerve pain.

mellowgecko

I think bone pain is a typical sign of the sarcoid, is it not? I get what you mean, as if the bones themselves are in pain! actually, that s what led me on this journey of sarcoidosis, when i went to urgent care complaining of this horrible all over body ache involving both bone and muscle. my white cell count was off the charts then. you may want to take a look at your wbc, and make sure that s not the culprit, as that can cause pain. otherwise, get a painkiller and just know it s *ONLY* the sarcoidosis..whew, what a relief! *rolling eyes* anyway, i am on morphine now, and that keeps it down enough to the point where i am somewhat able to do stuff. ask your doc for that, and if he refuses, go see a pain management doc. good luck,

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