Lower back pain

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Does anyone else get substantial back pain in their lower back with Sarcoidosis? I get it higher up where my lungs are, but down in the pit of my back is so very painful. It affects how far I can walk as i get so slow. Ive had it since I was diagnosed but its not the most important thing so the Dr isnt that interested in treating it? Im not sure whether its 'normal' thing to have or something that I need sorting



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  • Posted


    I have had lower back pain for 30 years which I put down to sarcoid...granuloma in my joints...my opinion anyway.

    Also knee pains to match.

    I have not found a cure but I am now having massages to help manage the problems in my joints. It has given me some relief. I beleive we all have long term joint pains thanks to sarcoid and its granuloma forming in all our joints.

    If you find a cure can you please let me know.



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    • Posted

      I dont think I'll find a cure but im going to go back and see my Cranial Osteopath again. He is a God. Rewind histiry, I had a serious head injury whilst abroad (no drink involved) and was referred to hospital and tests etc and it was a case of youve had a bang to the head it will take 2 years for the fluids to settle down. meantime get on with it. I had the mother of all headaches every day and night for 4 years and nothing took it away completely. I went to see the Cranial Osteopath after reading a book about it and being recommended to visit one. I laid on the bed. He seemed to do very little. He held my head in his hands and very gently moved his hands about. Not even as much as a head massage. He did the same to my back by putting his hand under my back onto my lower spine. That was it. It seemed I'd just paid £35 for not very much. Next day felt awful, he said I would. went again in 5 days, felt better and from that day on the headaches have gone. He actually told me about how much my head hurt and he couldnt see how i'd coped with it. had a few treatments and it was all sorted. Next time I went I'd fallen off a ladder and cut my side open. (Yes I used to fall alot). went to see him, all sorted. So Im going to see him and try to see if he can put me back together and relieve the back pain if possible. They do it alot on new born babies as theyve had a traumatic journey being born and they get pushed and poked and they realign their skeleton. No sure how it works but it most certainly definitely works for me. If you do try it yourself, then give it a few visits, research a good practioner and nothing to lose


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  • Posted

    I too have sarcoidosis it's in my lungs brain and causes me to have my gall bladder out. Because of the gall bladder I got extreme pain under my shoulder blade and them my lower spine needed steroid injections in my disks 1-5 due to being inflamed and corrupted. I now have to wear pain patches until I get the same in my breast bone due to sarc in the breast bone tendons so perhaps that is similar to yourself. I think you have to ask for a pain clinic as they have really helped me I hope this helps you

    All the best kirsty

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  • Posted

    Hi Nickademus,

    your back pain doesn't have to be related to sarcoidosis.

    As far as I know, if your back pain, where your lungs are located, does not get worse with breathing (is it more painful when you inhale air or when you exhale?), it's usually not connected to your lung problems. Additionally, most people don't have lung pain, except maybe for those suffering from pneumonia (in this case, there should be a sharp pain) or if they have a condition that has affected the pleura (this may happen when TB attacks the pleura; in most cases, it resolves once TB is cured).

    Back pain may also be caused by herniated discs or degenerative disk disease. I think it's better to have a spine x-ray and see a specialist before making any assumptions. If you suffer from other condition, and you think it's sarcoidosis, it may get worse over time. Maybe, it's something treatable...

    Probably, you're sick and tired to see a specialist for every new health problem...but, aren't we all? smile

    Once a person gets a serious disease that cannot be cured, he or she will eventually experience a series of additional problems and conditions.

    It's not about IF; it's al about WHEN...

    I really hope it's not something serious...

    Wishing you all the best,


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  • Posted

    Sarcoid causes me a lot of stiffness, but also pains around the shoulders and lower back. I find that anti-inflammatories help me to keep going, but I worry about taking too many of those along with my methotrexate. Get your doctor to have another look. Make an appointment with your GP and say that you really want to focus on that one thing - as magda says below, there are lots of other causes of back pain. Pain can be miserable! I had one day on 18th October when it all went away for a day - still don't know why! I'm always hoping for another day like that smile
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