Having joint pain is this part of the desease

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I was diagnosed 1 year ago went my pituitary glands swelled to twice their size.  I heard it was very rare to present this way. Anyway I went thru all the biopsies and tests and nothing internally has been effected so far.  I no longer have the extreme fatigue but I am having a lot of joint paint.  The doctors have told me I don't have sarcoidosis anymore but after reading some of the posts I am so confused. Is this chronic ?  Everything I read is confusing too, from this is a common deseaseI to it is rare, etc.

i would appreciate some discussion to help me.  Also, did anyone else's sarcoidosis present like mine?

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8 Replies

  • Posted

    Hello Nancy sorry to hear you have been poorly. My late husband had neuro sarcoidosis and I presume this is what you have? It doesn't go away but it can be in remission. It leaves scars where it has affected. How did the doctors diagnose you my late husbands diagnosis was prognosis of illimination as sarcoidosis is hard to diagnose. I must say standard doctors aren't fantastic with this illness and my advice would be to demand to see a doctor who specialises with it if you haven't already done so. I'm surprised you haven't been affected with fatigue as that was one if my husbands main symptoms
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    • Posted

      Originally I was so tired a nap was always need to get through the day.  I was diagnosed through process of elimination, pet scan, lung biopsy,etc.

      The first sign was my glands enlarging.  As soon as they went down everyone says I'm over the desease.  That's where I'm confused. This forum seems to say it doesn't go away.

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    • Posted

      That's right it usually gets dampened and calmed down with steroids then it's in remission and sometimes never returns. Let's hope you have that. However doctors usually like to keep a check every 6 months to a year if all is well. Sounds like your doing well so all good honey x
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  • Posted

    My sarcoidosis most certainly left me with achy joints. Bit of a job to get started in the morn. Standing up after sitting for to ong. It's seems to be part of life now😜
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  • Posted

    Hi Nancy

    Yes joint pains is part and parcel of the complaint. The little granuloma manifest in your joints causing discomfort.

    You can go into remission once you are clear and hopefully you will not experience anymore activity. However, whilst I am in remission and have been for many years I still suffer from the under lying condiction. Namely, joint pains especially my knees. Every joint in my body is sore. Enlarged spleen and liver, stable at present. Fatigue, always tired, wanting to have a sleep but experiencing sleep difficulty at night, especially in the early hours of the morning.

    The condition is chronic but your lungs may improve with the aid of steriods.

    Can anyone else list their ongoing conditions for us so that we can all learnt from this post.

    Are we all suffering the same problems when in remission?

    Regards

    Tangles

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  • Posted

    Something I forgot to mention. I also have slightly fizzy lower arms and legs since the sarcoidosis attack. Always there at night.
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  • Posted

    Hi nancy,

    I suffer with sarciodosis on the lungs, the liver, the legs and mainly on my spleen which is got much bigger. I suffer alot with joint pain in my groan and my knees, I have suffered with this for at least 3 years and have been told this is definitely linked to later been diagnosed with sarcoidosis for the second time in 5 years. I have been seeing a professor here in ireland and he has warned me that vit d and calcium feed sarcoid which has prob not helped in the past and to wear su.block at all times, this relates to the joint pains and aches.

    I have been doing other things also to help manage my pain which is also helping, diet wise.

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    • Posted

      Hi Amanda

      Your symptons are so similar to mine.

      Joint pains especially knees

      Enlarged spleen

      Enlarged liver

      I have lost weight to help with joint pain...10 kgs so far.

      Take osteo panadol also for joint pain.

      Spleen is enlarged but stable so we dont know what to do about it.

      Liver is same as spleen.

      Calcium is interesting as I am low in calcium,,,is sarcoid burning it up.

      Vitamin D...I go out in the sun all summer long with fishing and sailing all summer. I get excess UV and suffer from rosacia because of this.

      Thanks for you post most interesting.

      Regards

      Tangles

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