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?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Hello @cheryl1,

As it has been a while since you last posted, I was wondering how you are feeling now. Do you feel that you have recovered from the pituitary surgeries?
I'd like to know how you are doing post-surgery and with Cushing's Disease. Will you post when you are able?

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My endo at mayo called 2 nights ago. Dr Meeks. He has such a calming manner. I have had very loose bowel movements since my surgery May 7th. He doesn't think related to the removal of adrenal glands. Suggested I see gastro intestinal Dr. I see a local Dr tomorrow. He also said to stop the metformin since my glucose testing 125 and below in mornings. The burning in legs still bad. I guess I am going to take slow and one step at a time. Thanks so much for your concern. I thank Dr Chaichana at Mayo for doing my 2 pituatary surgeries. It is amazing what he can do. I do have much weakness in legs. This is common with Cushings disease. You lose all muscle and I mean all! I am turning 63 the 29th and the bod looks like 83.

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@cheryl1 - I’m sorry the fentanyl patch didn’t work. Is it common to have such severe burning and pain in the legs? Any input from the pain meds doctor?
Could it be injury to some sensory spinal nerves? You don’t have weakness in your legs, do you?

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I went to pain doctor last week. I received 12mg fentynal patch. It doesn't help. The burning and pain in legs is horrible

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@cheryl1

Thanks it is so very hard and hurts bad when I try.

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@cheryl1 - The pain is a problem- I remember that from my daughter’s recovery. She was lucky to find a good pain management doctor.
When you do physical activity, don’t push yourself too hard.
Have you checked out any Cushings support groups online/ Fb?

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@astaingegerdm

@cheryl1 - You definitely have the right attitude and motivation. You will get there!
My daughter was a competitive swimmer before she got sick. She realized how much muscle power she lost when she tried it again. Like you, she set out to regain her strength.

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Take it one day at a time...eventually we will all be blessed to regain and even gain more muscle strength!

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@astaingegerdm

@cheryl1 - You definitely have the right attitude and motivation. You will get there!
My daughter was a competitive swimmer before she got sick. She realized how much muscle power she lost when she tried it again. Like you, she set out to regain her strength.

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Thanks it is so very hard and hurts bad when I try.

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@cheryl1 - You definitely have the right attitude and motivation. You will get there!
My daughter was a competitive swimmer before she got sick. She realized how much muscle power she lost when she tried it again. Like you, she set out to regain her strength.

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Know and trust that you can get better. The pace will be slower that you hope.

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@astaingegerdm

@cheryl1 - If you had surgery 2 months ago your body is still in healing mode. I admire your determination to regain your muscle mass. You will get there soon.
Recuperation is not easy- your body has been through the wringer, but now it will get better day by day.

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I hope I get better. I have had no life in over 6 months. By body has gone through so much. I hope to be able to have some fun again!

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