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Music and joint ache post adrenal surgery- CUSHING DISEASE/SYNDROME

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wantwothree
wantwothree

Hi there, I've been reading up forums and websites about post cushing opts and does appear to say a few symptoms that will (or still) appears post surgery.. I'm 6 weeks post now and on 15 mg of CORTEF steroids.  Overall I feel fine with the exception of muscle and joint ache that started to occur about 4 weeks post surgery. I feel like 100 years old, hardly can push myself up.  Is anyone feeling the same?

Weight wise- i gained about 25lbs and haven't lost any but friends who I occasionally see now comment that my moon face and hump have subsided slightly (It's still there!).  I wonder how long this will take..  I'm a pretty active person but the aches is making it difficult for me to get up and wanting to exercise (to lose weight!)..

Help 

0 likes, 8 replies

8 Replies

  • patty44596
    patty44596 wantwothree

    Posted

    You sound like your doing well 6 weeks out.  Yes the muscle and joint pain come with  post surgery recovery.  My pain started 3 mo post, peaked about 6 mo, and now at 8 mo it is letting up some. We all heal differently.  Take lots of warm baths.  If you have access to a pool it helps so much.  Try to move your joints daily too.  As you wean from the steroid you will see the weight will start to come off.  I didn't start losing weight until about 2 mo post op.  Then as I reduced it started coming off.  Good luck!

    • wantwothree
      wantwothree patty44596

      Posted

      Thank you for your feedback, really helped to speak with people going through the same symptom.  Slowly but surely process is what I keep telling myself although everyday the aches really make it difficult to do activities I wish I can do pre-coshing and especially with such an active son (He's 8).  Hopefully things get better.  THANK YOU 

  • courtnay26
    courtnay26 wantwothree

    Posted

    long term steroid use is usually not ideal

    because it can suppress cortisol

    However, you need to taper off them gradually to

    see improvements, ask your doctor

  • vicky_65919
    vicky_65919 wantwothree

    Posted

    I started losing weight after 11/2 months. Muscle pain has been the worst for recovery. Tomorrow makes 7 months and it’s still horrible. I started to feel a lot better at about 5 and then at 6 got bad again. Doc says it will go away with time. I’m still on meds but all my levels are getting better. Definitely true what are the blogs say. This is a disease where you need patience. We all will get back to normal. At least you are on the right track. 
    • wantwothree
      wantwothree vicky_65919

      Posted

      How much weight did you gain and have you lost it all? How long was your Cushing?

      The muscle aches really sucks , I can barely get up in the morning or when I sit too long trying to get up hurts all over. I wanted to start exercising  but the aches is making me give up daily!  It’s been almost 2 months now. I only lost about 6 lbs ;( gained about 28 lbs 

    • patty44596
      patty44596 wantwothree

      Posted

      My weight started coming off at 2 months.  I'm now 8 mo. post op and have lost 62 of the 70 pounds I gained.  Lost 10" off my waist.  I've been nauseous throughout this recovery so I attribute that to why I lost most of it so fast.  I remember aches being so bad. Getting up from a chair or the bed was such a struggle.  Looked like I was 100.  I am happy this passed.  I'm starting to like myself again, LOL!  You will get there too.

    • wantwothree
      wantwothree patty44596

      Posted

      How long was your aches? I wonder how long all the post recovery last ?

      Thanks.. and congratulations on your speedy recovery smile

    • vicky_65919
      vicky_65919 wantwothree

      Posted

      I gained about 60 lbs. I think I had cushings for about 3-4 years. 6 lbs is good in 2 months. Muscle ages are still horrible though not as bad to stand up after a while of being down. I also felt and looked like a was a 100. Lol 
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