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.

Teresa, Volunteer Mentor | @hopeful33250 | Nov 30, 2022

In reply to @captain1950 "The Surgeons have come a long way, I wish Her well!" + (show)

Hello @captain1950

As it has been a while since you last posted, I was wondering how you are doing. Have you had anymore follow-up scans? How are you feeling?

georgiamartin | @georgiamartin | Nov 13, 2022

In reply to @khauert "Hi. I have been experiencing excruciating and debilitating joint and muscle pain for several months now...." + (show)

Me too, on the search for help!

georgiamartin | @georgiamartin | Nov 13, 2022

I am having same problems! Diagnosed with enlarged pituitary this last summer and have incredible pain n my joints, muscles and nerves, feel as if my joints are dissolving, getting worse daily!!Endocrinologist found a low sodium level, so was on restricted fluid for several weeks, getting blood tests every day for a week, sodium level back up to normal, still no change🤷🏼‍♀️!
Neural surgeon wants to “wait and see”, new MRI is in July!!
Meantime I am suffering and getting worse every day!!
Found a new GP, thankfully, who LISTENED, and is sending me for a bunch of blood tests and referring me to a chronic pain clinic!
Any suggestions gratefully accepted

captain1950 | @captain1950 | Dec 8, 2021

In reply to @astaingegerdm "What a relief to remove the tumor from such a dangerous location. My daughter’s adenoma also..." + (show)

The Surgeons have come a long way, I wish Her well!

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Dec 7, 2021

In reply to @captain1950 "It was wrapped around carotid artery, and I was dizzy so? Annuanl MRI check up, there..." + (show)

What a relief to remove the tumor from such a dangerous location.
My daughter’s adenoma also involved the carotid artery. The surgeon was 95% sure he got it all. Annual MRIs stayed normal and no symptoms since.

captain1950 | @captain1950 | Dec 7, 2021

In reply to @astaingegerdm "Such good news! I assume it could have caused more damage if left alone. Enjoy your..." + (show)

It was wrapped around carotid artery, and I was dizzy so?
Annuanl MRI check up, there is a small mengioma to watch!

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Dec 7, 2021

In reply to @captain1950 "they said it was nonproducing, but since its removal my body feels much better and my..." + (show)

Such good news! I assume it could have caused more damage if left alone.
Enjoy your recovery! How often do you have to follow up with MRIs?

captain1950 | @captain1950 | Dec 7, 2021

In reply to @astaingegerdm "@captain1950 - it sounds like your recovery is going well- very difficult surgery. My daughter had..." + (show)

they said it was nonproducing, but since its removal my body feels much better and my energy is slowly returning, after a prolonged absence. The surgeon said it was crushing my pituitary upward!

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Dec 7, 2021

@captain1950 - it sounds like your recovery is going well- very difficult surgery. My daughter had a cortisol producing pituitary adenoma removed 11 years ago. May I ask what type of pituitary tumor you had?

captain1950 | @captain1950 | Dec 1, 2021

In reply to @cheryl1 "What is the stealth MRI? Are you referring to Tesla 3?" + (show)

The Stealth MRI creates a 3d image of your skull and tumor so they can avoid Carotid arteries and optic nerves, the
Surgeon used 3d googles to assist.