Body aches

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I had surgery 3 mo ago. Tapering now 10mg/5mg. Body aches are intense. Others have this? How long approx does it last? I look like im 100 trying to stand. Asked my endo and shes not giving me a direct answer. I dont think she knows. I am her 1st cushing patient.

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  • Posted

    You are right she doesnt know and does not want to admit that she doesnt. Its going to take time for the aches and pains to leave. They have placed you on a low cortisone dose..and your body is used to more.

    I had a hard time with the change...because it took them 9 years to diagnose it. Just know you are going to get through this, that it will get better, give your body time to heal and adjust. Know there are plenty of survivors here on this forum as a testament of getting passed this. Your hormones are all messed up, it takes time for them to even out. Know we care.

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    • Posted

      Thank you so much for the reply. It means so much. Im not familiar with this site and hope to find more information.
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  • Posted

    Hi Patty, so sorry you are having these body aches.  if your Endo doesnt have any other Cushings patients she will be learning too.  None of us are the same and because it is so rare it will be difficult to judge what is normal or not.  You have been used to a lot of Cortisol and now you are coming down.  Your body is bound to ache and you will be sore.  Now that they have got you on a stable daily dose of steroids you will hopefully soon feel better.  Have you started losing your weight yet?

     

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    • Posted

      Thank you for the reply. Yes Ive lost 40 pounds in 3 months. Whoo hoo! I lost fast because my first two months i had severe nausea. Now in my third month i have really bad body aches. Chills too. I havent worn a coat in 3 years now im cold. Again, happy to have found this site.
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  • Posted

    Hi Patty, Just one bit of advice, make a list of how you are feeling so that when you see your Endo or G.P. you will remember what you have felt even if the symptoms go away.  I always do otherwise I get sidetracked!  It also helps us on the forum to know what other Cushy's go through so we can help more people.  Take care and let us know how you get on.  Have you seen your GP about the chills etc? Might be worth it.  It will help them too.

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  • Posted

    Hi Patty, so sorry to hear that you are suffering with aches and pains.  I had my pituitary surgery to remove a 5mm tumor in 2003.  I am completely recovered from Cushing's Disease today.

    I wanted to let you know that I was terribly sore from head to toe for a very long time after surgery.  The first few weeks of recovery was the worst....I also suffered from horrible nausea.  All I could do was lay down on the couch and moan and groan all day.  My doctors didn't warn me about this or offer any medication for relief.  

    Cortisol is a natural anti-inflammatory for our body.  With Cushing's, we have way too much of it and our muscles get very used to having it.  After successful surgery, your body goes through severe withdrawal from the cortisol. I weaned fairly aggressively off of the Prednisone after surgery.  I was very determined to be ridden of my Cushing's symptoms as soon as possible.

    I would say that my aces and pains lasted about a year after surgery.  If I was in the car for a while, or in any one position for too long, I would be all stiff and sore.  I started to take Aleve and that did help a lot. I am in the USA.

    I do hope you are feeling better soon! 

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