severe lower back and hip pain

I am wondering if anyone has sarcoidosis in their back and hip bones? About 9 months ago mine started in my rt hip and lower back. I thought I was doing to much lifting, being in retail. About 6 months ago my hand and arm started to freeze and curl in with severe pain. In January I could not stand it no longer and went to a chiropractor. I then took a leave from my job, and started physical therapy besides. At the end of December I had a small stroke on my left side. The doctors did cat scans and MRI'S and said they could not find anything in my brain. They did do the camera down my throat to see my heart, and they found an anuryism in the wall between my left and right ventrical. MRI's on my spine showed nothing.

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I have some very strong lower back pain now as well. I have been overweight most of my life and have had back pain but this is the worst ever. I can stand only about five minutes and the pain gets so excruciating that I need to sit down and am wishing that I had some percoset or sorts. I have not gotten anything checked out with this yet. I feel that the docs I have been seeing around here would think that I am full of bull....

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Muscle pain.. joint pain can be very common with Sarcoid and flare ups are sometimes the worse. though some people seem to also have the muscle/joint pain constant. I too have times were my hips and lower back are just killing me....and it seems like that area of pain will never go away. My flare up last for weeks. At night time trying to sleep is a pain in the butt too...becuase my hips and even my shoulder areas seem so sore...as if I had been bed ridden for ages. I just can't get comfortable. sometimes...right before bed soaking in the tub of really warm/hot water helps ease the pain long enough so i can get to sleep.

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Sleepyone, I know what you mean. I have went to the chiropracter who is stunned that everything he does only helps for about an hour. I also started physical therapy to see if that would help. I was in water therapy and that did not help. My rheumy tried to tell me it is bursitis. My dad has bursitis and at least it goes away this does not. I cannot even walk at times. It feels like it is locking up and freezing up. I take vicodin and also oxycotin at times and it does not do anything. I have had MRI'S, Cat Scans, and xrays that show nothing there. My Internist said that she saw degenterive joint disease. But did not tell me how they could help me. This week I have been on the couch most of the time, though that hurts too.

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Sleepyone, I know what you mean. I have went to the chiropracter who is stunned that everything he does only helps for about an hour. I also started physical therapy to see if that would help. I was in water therapy and that did not help. My rheumy tried to tell me it is bursitis. My dad has bursitis and at least it goes away this does not. I cannot even walk at times. It feels like it is locking up and freezing up. I take vicodin and also oxycotin at times and it does not do anything. I have had MRI'S, Cat Scans, and xrays that show nothing there. My Internist said that she saw degenterive joint disease. But did not tell me how they could help me. This week I have been on the couch most of the time, though that hurts too.

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Survivor 360, The hot baths help for awhile, but whatever is going on in my arm throbs in the hot water, it feels like it is pulling. If that makes sense. Sleeping is another story if I want to turn because I cannot lay in one position very long, I have to pull myself over.

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Yes, I have sarc lesions in the hip socket and L4 spine. Add that to a genetic Anklosing Spondilitis. Not fun. Another day in Sarc Land!
My motto: Move-short walks, soak the pain and rest.
Pain meds when I just can't manage otherwise.
I use a cane now for support when the hip feels numb or weak.
Good Luck. Hope things will improve for you.

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I have pain in my extereme lower back. I can stand for only a few minutes and it kicks in. Had not realized this may be sarcoid related. I have to sit down for a while to get relieve. Not to up lifting to know it could be worse. I use a cane if I have to walk much.

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Yes, I have biopsy proven sarc in my spine. They pulled it out of L5 during surgery in Jan 09. I have many osteolytic lesions that are showing up on MRI imaging.

They thought the lesions were due to multiple myeloma. There seems to be no way to distinguish between types of lesions other than an open bone biopsy. NO THANKS!

Yes, you are right. The pain is VERY severe. Have you had a bone density study? You could have some compression fractures and some SI joint dysfunction. Physical therapy is supposed to help the SI joint pain but you have to find a skilled therapist. Not all of them are created equal.

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I have not had the bone density test yet. Is that how they found the lesions?

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I do not have it in my spine or hips but I do have the muscle and joint pain. I used to have it only during flare ups but now its a daily struggle. I manage with medication and movement. Sleepyone, when I get to the point where I can stand for no more than 5 mins, *this has happened to me twice), I also had lower back and leg weakness. Had trouble lifting things and walking upstairs...anything that required back and leg muscles. I was determined that I had myopathy caused by steroid (prednisone) toxicity. I tapered off the prednisone while starting anothing med and all of the symptoms gradually reversed. Soon, I was back in the gym 3 times a week with no problem.

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I do have to say that over the years, the way that my flare ups manifest themselves has changed. Symptoms that I used to experience, I do not have anymore and they have been replaced with others.

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I suffer EXTREME lower back pain as well. I started Lyrica for my Fibromyalgia in October of last year. It helped quite a bit with my upper back pain. I had a single bout with Pulmonary Sarc in 1995-6(around there) The pain is as you describe it. I am unable to stand for any period of time and even lying down is painful. My doctors refuse to prescribe anything stronger than Ultram which barely puts a dent in the pain but is better than nothing which is my only other choice. My doc recently upped my dosage of Lyrica. I think he thought it would take care of my hip and lower back pain. It hasn't. He is talking like he wants to even stop prescribing the Ultram! I can't take living in this amount of pain. The doctors can't or won't help. I am in tears over this even as I write this. I have no idea what to do.

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Myst,
If I were still a practicing alcoholic, I know what I would do. I would be drunk and telling the docs just what was what!
I have learned to live with much pain throughout most of my adult life, but this lower back pain is the worst agonizing pain I have endured. I have not seen a doc about it yet out of fear of facing what you are, a doc that just will not understand and I am out $158 for a 15 min lecture about losing weight, stop coffee, excercise more, and all will be ok.
BULL!! Stand up and scream!!!! This is my body and my life. I WANT IT BACK!!
Yes, this stuff has gotten me very bitter because of all of the damn road blocks and hurdles we have to deal with to get relief.

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My name is Eric, I've had sarcoidosis since 2003 and last year for the first time I had the symptom in my back. It lasted for about 2months and it went away. I soaked in hot water epsom salt and did alot of stretching, within a month or two the pain went away. I wish you luck.....
regards, Eric

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I have terrible hip and back pain. I first thought it was the result of an auto accident 30 years ago. It's not. I cannot stand for more than a couple of minutes, walking, even with a cane is awful. Sitting down isn't much better as it feels my legs and arms are trying to turn inside out. Sometimes I have to use the other arm to lift one past my waist. Two hydrocodone and a muscle relaxant don't touch it any better than ibuprophen. I see my pulm on Monday since she will have to refer me to others. It is comforting to know and show the docs that it is not in my mind.

I wish you all a good, relatively painfree, weekend.

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I also was prescibed the Lyrica for the fibromyalgia. They upped my dose 6 weeks ago it does not help. I pulled up last night at 2am, (since I hurt to much to sleep), a picture on the web that showed what the sarcoid looked like when it gets in your bones. I am going to call my chiropractor to do a set of x-rays and let me see them. I think the radiologist see's it as degenterive bone disease which is what the article said normally happens to us, they do not see sarcoid alot. One thing it did say was to never do the surgery. I feel for you, the pain is aweful.

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I too have lower back pain along with hip/groin pain. Of course, I never connected it to Sarc (hmmm). I just trying to figure out which Dr. to see, PCP, Ob/Gyn or Chiropractor. Sometimes when I stand up from my desk, I feel like I need a walker. I hate what Sarc has done to me. I was an active person, now I feel like I'm 100 yrs old. Every day I wake up, I wonder what is going to hurt now. Although my PCP is wonderful, I don't want to be perceived as a hypercondriac.

I guess another day in sarc land.

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Hi all, I have had severe pain in lower back, and now for the last few weeks I have had this most awful pain in the front top of my legs? It has eased off today, but when it's bad it is so hard to get up from a chair/bed, and getting down also is so painful. I haven't gone to doc's as feel my think i am a hypercondriac. To top it all my face is on fire, with inflamation and awful spots which look so hideous on my face. I just want to hide.

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Hi there,
Yes, I now have upper and lower degererative lumbar in my back due to this illness. I have severe left hip problems where it will just go out of joint and there is a noticeable lump there.
There are days when I can't stand for more than 30 minutes my back starts to hurt. And you can't lay down because it only makes it worse my dr. says.

I wish you all the best,
Lisa

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fire3, Does you skin hurt to the touch too? I get that on the front of my legs besides, and when that starts the skin feels like I baked in the sun and was burned. Please talk to your doctor. There seems to be an awful lot of us with the L4 and L5, involvement.

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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.

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