Pituitary tumor symptoms: joint, muscle and body aches

Posted by khauert @khauert, Jan 12, 2020

Hi. I am new to this. And not sure I’m in the right category. I was diagnosed with a pituitary tumor in November. However, I have been experiencing terrible joint, muscle and body aches for a year now. No doctor knows why and nobody can confirm its from the tumor. I’m frustrated and becoming very hopeless and depressed. Can anyone with a pituitary tumor relate to body pain?

Hello @cheryl1,

In March you had an appointment scheduled at Mayo/Jacksonville. I hope that appointment went well. Did you gain any new information? I hope you are feeling better. I would love to hear from you.

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@cheryl1

Having ipss at mayo in Jacksonville Thursday. I hope Mayo will help me. I will keep you posted. I had ipss at mayo 12/3. 3mm cyst removed
It did not stain for acth. Now the ipss 3/12

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Hello @cheryl1,

I was just wondering how you were doing? I hope your appointment at Mayo/Jacksonville was helpful to you. Will you post again with an update?

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@astaingegerdm

@cheryl1 She took Metformin too. She is a very strong person -we couldn’t believe how tough she was when going through this horrible illness. You are strong too- see what you have been through already!
There is a Cushing’s group on Fb by the way.
I would appreciate it very much if you would post a brief update now and then when you have the energy!

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I had 2 pit surgeries and a BLA all within 5 months at mayo. I am now in recovery stage trying to build muscle and loose weight. I realize now what a challenge I have ahead of me.

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Pituatary tumor can mean Cushings. Cushings causes fatique thin skin bruising hair loss diabetes bone loss aches and pains

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@cheryl1 – You have been through so much in such a short time- Are you on any medications now? What do you experience being your biggest challenge now?

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@cheryl1

I had 2 pit surgeries and a BLA all within 5 months at mayo. I am now in recovery stage trying to build muscle and loose weight. I realize now what a challenge I have ahead of me.

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@cheryl1 Thank you so much for the update. You certainly have been through a lot over the past five months. Will you be going to physical therapy in order to build muscle?
Do you find it difficult to keep up your determination and courage to complete the recovery process?

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I am going to pain management doctor and a physical trainer to rebuild muscle. Cushings disease has taken away all of my muscle. I find it difficult to even walk due to all the damage this disease has created.

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@astaingegerdm

@cheryl1 – You have been through so much in such a short time- Are you on any medications now? What do you experience being your biggest challenge now?

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I am on 25mg hydrocortisone . the surgeons and nurses at Mayo have been wonderful. I was in good hands. I am currently trying to rebuild muscle. Dr Chaichana Dr Elli and Dr Alamu I would highly recommend. I have a long road ahead., thankful to be alive.

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@cheryl1 – You are right, Cushing’s does a lot of damage to your body. Good thing though, your muscles will return. I remember my daughter actually needed pelvic floor physical therapy- all muscles are affected.
Bone density is also diminished- my daughter’s kidneys showed very tiny calcium deposits- causing blood in urine. This went back to normal fairly soon too. The body will repair itself –
Wishing you a speedy recovery without much pain.

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I had a few joint aches, but primarily I lost muscularity. I couldn't do activities I wanted – ie walk a distance. Also check your face – is it puffy. Check your blood cortisol values. Have you been diagnosed as having Cushings disease? I had a benign pituitary tumor, that constantly send out messages of run-flight to my adrenal glands. which in turn drove my muscles to move, move, move – not that I literally always did. Gradually over several years my muscularity lessened and I thought I was just getting older! By the time I arrived at Mayo, I couldn't raise my arms. I had a large biopsy of my pituitary, and both adrenal glands removed. Subsequent MRIs has shown it has not grown. Please work diligently with a physical therapist to recover your muscles. I waited 8 years and only recently realized that I needed to be doing so immediately after returning home. I take daily cortisol pills and any time I recognize I am under stress. Good luck.

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I have had 2 pit surgeries and both adrenal glands removed on 5/7. I have been going to personal trainer to attempt getting back muscle. It is both painful and difficult.

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@cheryl1

I have had 2 pit surgeries and both adrenal glands removed on 5/7. I have been going to personal trainer to attempt getting back muscle. It is both painful and difficult.

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I'm so sorry to hear of your struggles right now, @cheryl1. Have you or your trainer noticed any improvement in your muscle? Does your doctor offer you any other suggestions?

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