joint, bone and muscle pain

I just starting getting joint, bone and muscle pain. I have been diagnosed with sarcoid in my lungs and lymph nodes and now think its in my bones. My doctor wants me to see a Rheumtology doctor because my doc is a pulmanary doc and he wants the rheumey doc to exam me and treat me if need be. Has any one else out there have these symptoms and see different doctors for sarcoidosis in different organs in your body? Also the pain is so bad that I can hardly stand it. What do you take for the pain?

Please......any help out there?

Report post

36 replies. Join the discussion

I have doctors in MANY specialities b/c I've had the disease in many body systems. Seeing a Rheumatologist will tell you if you have what is called Sarcoid Arthritis, which I have. Medications are the same as an arthritis patient would take. You can also have the disease in your bones which hopefully your Rheumatologist can either address or send you to yet another specialist.

Report post

Thanks for your reply. How can the Rheumatologist tell if you have sarcoid in your bones? Are you one prednisone and metotrexiate? And how do you get relief from the pain? This is horrible!!!

Report post

i just did a post on here that is still active about the same subject and right now i want both legs chopped off. only thing is i would prob have phamtom pain and keloids from the surgery.
seeing a rhumy now and she is thinking joint sarc but i explaine dthat the 2 orthopedic surgeons i am seeing now don't believe in joint sarc and don't look for bone sarc and she is not happy with all this being in Boston hospitals. she is trying to say fibro but this is so much more than fibro anad that i know for a fact.
i haven't found a pain med or muscle relaxer that truely works but they haven't tried any heavy stuff on me either.
my shoulders hurt when i try to pull a shirt over, i don't want to walk but lying down hurts my legs just as much, stabbing pains throughout my body, etc.
discouraged
gn

Report post

I'm so glad that I am not the only one with the issue too. My PCP is sending me to Rheum. also. I was referred to one Rheum. but it was going to be September 3. I happen to work to be an administrative assistant to the health science as college and one of my dept. chair called in a favor. She was able to get me in within the next two weeks. The pain is getting worse as the days go by. I am like you also and hope to find some releif with meds hopefully. I don't know what worse the "brain fog", and no energy or the pain all over.

I will let you know what I find out.

Report post

GREAT, THANKS! I AM GOING TO MY RUMMY TODAY AND LET U KNOW WHAT HE SAYS!

Report post

It's horrible, I know. I am going to my rummy today and i will post when I find out what he says! Keep the Faith!

Report post

oh ya, recently I have been dealing with severe ankle, and knee pain. Joints swell so much that I can't walk and the bones in my ankles and knees feel like they are going to seperate. It is the strangest feeling. I also have fingers and hands that swell so much I can't use them and my knuckles go white. My doc told me that is Raynauld's phenomenon. Anyway, I hear ya. I have to go back to the Reumy. She is treating the sarc. Good luck and I hope you get some answers.

Report post

Because of my nasty pains I take Hydromorphone 30 mg. twice a day with 8 mg. pills for breakthrough pain as well as Meloxicam 15 mg. Good luck

Report post

k, what the dr say and do?
gn

Report post

rarity

i wish i could get my hands on 1/2 the meds you have. i have been trying vicodian apap ?asprin, tylenol?. which they are trying to stop. i sure hope so. cause many take extra pain med for the pain and body is overdosed on the other stuff and you don't always need it. so that is 1 law that MUST be passed.

still in my pity party as i am here in pain getting nearly no work done.
gn

Report post

are these narcotic drugs? I really want to try and stay away from them. Has your doc put you on prednisone and mexotrexiate at the same time and if so did it help with the pain?

Report post

I went to my rummy doctor and he is doing more blood work and I am having a Gallium Scan done on Wednesday. A gallium scan is a nuclear medicine test that uses a special camera to take pictures of specific tissues in the body after a radioactive tracer (radionuclide or radioisotope) makes them visible. I get this on Monday cause it has to be in your body for 2 days. Each type of tissue that may be scanned (including bones, organs, glands, and blood vessels) uses a different radioactive compound as a tracer. The radioactivity of different tracers decreases over a period of usually hours, days, or weeks. The tracer remains in the body temporarily before it is eliminated as waste, usually in the urine or stool (feces).
During a gallium scan, the tracer (radioactive gallium citrate) is injected into a vein in the arm. It travels through the bloodstream and into the body's tissues, primarily the bones, liver, intestine, and areas of tissue where inflammation or a buildup of white blood cells (WBCs) is present. It usually takes the tracer a few days to accumulate in these areas, so in most cases a scan is done at 2 days and repeated at 3 days after the tracer is injected. Areas where the tracer accumulates in higher-than-normal amounts show up as bright or "hot" spots in the pictures. The problem areas may be caused by infection, certain inflammatory diseases, or a tumor.
Why It Is Done

A gallium scan is done to:

* Detect the source of an infection that is causing a fever (called a fever of unknown origin).
* Detect an abscess or certain infections, especially in the bones.
* Monitor the response to antibiotic treatment.
* Diagnose inflammatory conditions such as pulmonary fibrosis or sarcoidosis.
* Detect certain types of cancer (such as lymphoma). A gallium scan also may be done to determine whether cancer has spread (metastasized) to other areas of the body, or to monitor the effectiveness of cancer treatment.
So this sounds like a good test and will tell it the sarcoidosis is in my bones, muscles or tissue. And the mean time my doc increased pred. to 50mg for 2 day then 40 etc. The waiting part is the worse....next week. Keep the Faith!

Report post

These drugs are narcotics and they are given a bad wrap and if you get to a point where you are in a hell of a lot of pain you will be more than happy to jump on the band wagon and slurp down the poppy powder with the rest of us because chronic pain is the most insidious part of this disease. It eats your soul. However if you want to face this pain for the rest of your life and avoid this valuable tool that is up to you but you will have forgone something that most of us have fought most valiantly to get.

Report post

C-C,

My mouth dropped open when I read your last posting. I too am scheduled for Nuclear Gallium Scan next wk. I was going to do research on it then WOW you did most of it for me. I am getting injection Weds 12:30, then back on Friday 12:30 for scan. I am praying this test will give more info as to how much this disease is affecting my body. I have sooo many issues: arm bone tumor/pain, right hip pain, GI issues, chest lymphnodes, heart, lumps in breasts, etc. This test sounds like it may really help instead of getting multiple scans by multiple docs. Please let me know how you make out from yours & I will do same.

Re: pain & meds...I recommend always starting w/least potent, then work your way up as needed. Example: tylenol, advil, aleve, aspirin, celebrex, tramadol,(those are all non-narcotic) next come narcotics: tylenol w/codeine, vicodin (comes in 5mg, 7 &10), percocet (also comes in diff strengths), dilaudid, oxycontin, fentenyl patches, the list goes on & on. Each person is different as to what works for them & what their body can tolerate. (For instance: I can't take any NSAIDS (Advil, Aleve, aspirin, celebrex) b/c I've had bleeding ulcers. Oxycontin did less for me than vicoden (which is weird b/c oxy is much stronger) but it's just my bodies chemistry. I asked my pharmacists for options. She was very helpful as to what's out there & pro's & cons. It's good to have couple choices, so when pain isn't too bad you take less strong meds, but when it's real bad you have one that will help. Joint & bone pain I've found are the hardest to manage. But some relief is better than none right? I too felt same as you about avoiding narcotics, but then so many extremely painful health issues hit me one after another & I couldn't take it any more. So I've accepted that they serve a purpose & I tell myself that it's not forever & I expect that sometime eventually I will NOT need them (I remain forever hopeful). If you take as prescribed & honestly use them for pain (not a mental escape) then you are not abusing them.

I hope you get some answers & relief soon.

Report post

Yes, I will post my results which I will find out next Thursday. I'm glad they are doing this test so they can find out the cause of the bone pain. Right now my doc upped my pred. to 50mg and its really helping with the pain and also I am taking a anti-inflamatory.
Thanks for your info on pain meds....I will find out more next week on how my treatment will be.

Take care

Report post

I will do whatever it takes to get rid of the pain.....right now the high dose of prednisone and a anti-inflamatory is helping!

Report post

I was originally on prednisone to help control the inflammation of the disease. Then my doc put me on MTX so I was on both for a period of time. Prednisone "kicks in" almost immediately whereas it can take 2-3 months for MTX to "kick in". Eventually, my doc wanted to wean me off or severely reduce the dose of prednisone I was on b/c prednisone has such horrendous side effects (much less than low-dose MTX treatment).

In the past I have had two gallium scans and had no problems with either of them. Good luck!

Report post

So what did your gallium scan show? Are you still on the prednisone and MTX and if so how much? How are you doing now and where do u have the sarcoidosis?

Report post

hi chiefs_chick

you are SO lucky to be having this test. i have been trying to have a galium or pet for a good yr now and drs say it costs too much money and too much radiation and no reason for it but i had 12 seperate radiation tests done in a year. so you tell me which is cheaper and safer, please. i think my gallbladder alone was done 5x only to be told it was ok and when taken out it was totally inflamed. i just wish my tests would show what my body is doing to me but they just don't.
good luck and keep us posted
gn

Report post

I was doing a search on gallium scans and this came up. It is so helpful. I finally got a doc to order a whole body gallium scan and I am going in tomorrow for the first of several appts. They want me to come in every morning for a scan for 4 days. I am in so much pain in my muscles especially my calves, thighs and buttocks although my shoulders and back hurt as well. What have been the results of your scans? I also have bone spurs growing on my hands that cause pain as well. He ordered a bone scan for the following week. Finally a doctor who listens and takes action.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders