1. < Neuroendocrine Tumors (NETs)

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.

picturemanz | @picturemanz | Jul 19 8:18am

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

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Mentor
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)
@pamp56

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.

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I look forward to hearing from you again, @pamp56

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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)
@hopeful33250

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?

Jump to this post

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.

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1 reply
Mentor
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)
@pamp56

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.

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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?

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1 reply
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.

REPLY
1 reply
Mentor
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)
@pamp56

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!

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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?

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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)
@pamp56

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!

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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.

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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!

REPLY
2 replies
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.

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thomasfox200 | @thomasfox200 | Jun 26 12:53pm

Hi. I'm new to this. And I just don't know what to do. My wife is so patient,and considerate. Anyways I am having really bad vertigo and bad nausea with really bad headaches with neck pain, so in May they did an MRI and found a large pituitary mass and it's pressing on my brain stem. There goes the really bad head and neck pain. So far I'm on my 3rd neurosurgeon. From Hartford healthcare. All my dr's I have seen make me feel like there isn't anything wrong. I don't know I guess I am just venting. My wife already has a lot on her plate. Since I can't work anymore due to my vertigo and nausea. I guess I am wondering what to be expecting? Thank you

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