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 | 2 hours ago

In reply to @picturemanz "Hello, Has anyone had focal impaired awareness seizures with pituitary tumor diagnosis?" + (show)

Hello @picturemanz and welcome to Mayo Connect. In your post, you mention being diagnosed with a pituitary tumor. How long ago was this diagnosed? Here is a link from the Epilepsy Foundation website describing a focal onset impaired awareness seizure: https://www.epilepsy.com/what-is-epilepsy/seizure-types/focal-onset-impaired-awareness-seizures#What-Is-A-Fo-Impaired-Awareness-Seizure?

Did this seizure disorder begin at the same time as your diagnosis of the pituitary tumor? What type of treatment are you receiving for the seizures and the tumor?
I look forward to hearing from you again.

picturemanz | @picturemanz | Jul 19 8:18am

Hello,
Has anyone had focal impaired awareness seizures with pituitary tumor diagnosis?

Teresa, Volunteer Mentor | @hopeful33250 | Jul 17 7:16am

In reply to @pamp56 "Hi, I've been reading about this adenoma & what it's possible issues can be but, after..." + (show)

I look forward to hearing from you again, @pamp56

pamp56 | @pamp56 | Jul 16 5:59pm

In reply to @hopeful33250 "It would be a good idea to educate yourself about this type of tumor. I encourage..." + (show)

Hi, I've been reading about this adenoma & what it's possible issues can be but, after reading comments about issues others are having, I too are having some of them & was unaware the adenoma may be the culprit of these issues. Like I said before, the doctors aren't too concerned because it's non functioning & tests are "normal". However, I'm discovering it may be causing issues from the pressure of the growth pushing on the pituitary stalk, optic nerve & brain. I'm waiting for approval to go out of network to a UC Davis neurosurgeon but I'm staying in constant contact with my GP & Endocrinologist. I'll discuss seeing an oncologist at my next appointment.

Teresa, Volunteer Mentor | @hopeful33250 | Jul 16 2:18pm

In reply to @pamp56 "Hi & thank you for your reply! No, my doctors haven't recommended an oncologist, only a..." + (show)

It would be a good idea to educate yourself about this type of tumor. I encourage you to read the article from the American Cancer Society. I look forward to hearing from you again when you have more information, @pamp56.
Do you have any follow up appointments scheduled yet?

pamp56 | @pamp56 | Jul 16 11:52am

Hi & thank you for your reply! No, my doctors haven't recommended an oncologist, only a neurosurgeon. I just completed an ophthalmology test & they're digesting that info. Its slow going & they don't seem to think anything of it! I guess I just have to wait & see, but I'll discuss an oncologist with them to see what they think. This is all so confusing because I'm trusting others with my care & even i don't understand what the ramifications might be. I'll keep you posted with what I find.

Teresa, Volunteer Mentor | @hopeful33250 | Jul 16 11:00am

In reply to @pamp56 "Hi, I was diagnosed with a non functioning pituitary adenoma just over a year ago however..." + (show)

Hello @pamp56 and welcome to Mayo Connect. I am sorry to hear of these new symptoms that have developed. I'm sure that must be frustrating for you. I see that you are looking for a referral to a neurologist. Have you already consulted an oncologist? I found some interesting information from the American Cancer Society website about treatment for these non-functional pituitary tumors. Here is a link to that information, https://www.cancer.org/cancer/types/pituitary-tumors/treating/non-functional-tumors.html

After reading the article, I noticed that there are treatments such as surgery, radiation and chemotherapy. Have your doctors recommended that you see an oncologist?

chris32225 | @chris32225 | Jul 13 11:17am

In reply to @pamp56 "Hi, I was diagnosed with a non functioning pituitary adenoma just over a year ago however..." + (show)

I truly emphasize with your condition. My only suggestion is: you are your best advocate. Be the squeaky wheel for yourself. Please check in from time to time.

pamp56 | @pamp56 | Jul 10 3:58am

Hi, I was diagnosed with a non functioning pituitary adenoma just over a year ago however there were very few symptoms until recently. I had an MRI in May 2025 that showed the adenoma had grown to 2 cm within the year & now I'm experiencing facial pain, headaches, muscle pain & weakness, fatigue, tremors, joint pain & I pass out all the time! I get very tired and shortly after, I pass out, mostly in my chair but I've passed out a couple of times on the kitchen counter & of course, the toilet. I'm waiting for approval to see a neurologist outside of my health network but I'm going to try to move it along a bit faster - if I can stay awake long enough to do it! I hope you can get some answers to your issues as they are allot like mine. If I get news about it I'll keep you apprised & would appreciate you to do so also. I look forward to some good news soon!

chris32225 | @chris32225 | Jun 28 11:18am

I am fortunate. My walnut size tumor is being treated with cabogoline. Most days ok, yet somedays—like today, June 28– very tired. At 67 and retired, napping is good. thomas Fox, i understand your frustration. My wife has really supported me. Being treated at Mayo Jacksonville.