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Addition to recent post on continuing pain

Hi. I wanted to ask also about what the rheumatologist I recently saw thinks about my pain and other issues. He feels I may have sarcoidosis Is it possibly all these issues I have combine could be caused by this. All the bloodwork appears normal but he said because of all the on and off steroid use somethin is getting masked by it. In the last year not only have I had herniated discs but a rupture at c5-c-6 with allograft and plating. Developed asthma. Pain all over. Neck right arm to hand. Numbness if and in in both hands now and bottoms of feet at times pain in hips and things wih severe loss I mobility I right hip and right shoulder. I mean I can't tolerate the pain level and can barely move from the stiffness and pain in the morning and when the pain pill wears off. I need some relief and some a sees and I'm not comfortable taking oxycodone 3-4 times a day to be able to function. Thanks for reading and lsitening


  • I am not all that familiar with sarcoiditis, but if the rheumotologist believes that could be the cause of the problems you are having, they will do the proper diagnositic testing and lab work to confirm or refute the diagnosis.
    Have you looked at the information on the web about the condition? It may help you if you read it and see if it matches in large part the symptoms you are experiencing.
  • Hi. Yes my sumptoms match many conditions from sarcoidosis to RA to Finromyalgia but nothing is showing up to confirm anything I. My bloodwork. The rheumatologist thinks this is due to the many oral steroids and steroid injections I have been off and on over the last couple of years for all this misery I have im afraid because of the continuing issues I am having wih my right side. Loss of ROM in right shoulder and hip. I could barely get myself out of the tub today due to weakness and severe pain it causes me to use my right hip. Shoulder. And hand/arm. Sometimes my legs just hurt from hip to thigh. The pain and stiffness I have makes me feel like an old lady I take care of when I see them walking across the room at a visit I am only 42 yrs d and can barely make my right shoulder move enought (not to gross you out) to wipe after going to the bathroom and I am right handed. It seems to have gotten worse and I continue with pain and pins and needles to both feet and legs. I am scared and disgusted that I contine to need ain meds. I am a home health nurse so I u derstanding a lot of this stuff but I is so hard to step back and look at what is happening to my body because it's me if you can undertand my meaning. I'm able to do it for my patients but can't for myself. Does this sound like anything to you. I mean what direction should I be looking in or heading to. To deal with all this. I go to a pain clinic but all they do is throw pills at me. Don't get me wrong. I'm glad they believe I'm hurting by I want to know what's wrong so I can manage it better. Thanks for any suggestions or ideas what may be wrong with me. Is it possible I have some kind of arthritis or stenosis ?
  • I think that most of us , who are caregivers by nature have a hard time, when it comes to dealing with our own problems.
    Unfortunately, there are not lab or imaging tests to confirm fibromyalgia diagnosis', it is a diagnosis by process of elimination, along with what are referred to as trigger points on the body that when touched cause pain.
    Have you or your doctors considered that if you have been on a ton of steroids for a long time that something may be going on with your endocrine system? It is something to consider. It may also be that there are mutliple health issues, and the symptoms are crossing over into the others and that is what is making it more difficult to diagnose.
    I would suspect that it might be something autoimmune that is going on, and the rheumotologist or endoncrinologist might be your best options for finding out what that is.
  • I just found out today now I have degenerative changes to my sacroiliac joint on the right. Both sides were to bxrayed but only the right was done. But anyway I'm sure they are both going down hill as this may be why I have the key pain. It's looking more and more like some kind of arthritis but my RA stuff was negative. Right hip killing me to and was I injected today so there goes the diagnosis bloodwork for the next 3 months. Dr. My pcp says its bursitis but last time I had this in over hip an X-ray and mri proved it wrong and the injection didn't help. This right hip is way worse than the other ever was. I'm so frustrated I'm ready to bawl. This is what I have to look forward to. A life of pain and pain pills. Seems I'm getting a good taste of what it's like to accept a diagnosis but don't even know what it is yet for sure
  • Frustrating to realize even as good as I am at helpin others and figuring out their issues. I can't step outside my own and see them. I have seen a rheumatologist whom I love. He is so caring and straightforward and will deal with all my issues. Not just his field. He feels I have sarcoid but due to all the steroids I am continually placed on o can't get a definitive diagnosis. Just like fibromyalgia it seems. Now it's complicated with this swallowing issue I'm having. Can any more things happen. Sheesh
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