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.

skp | @skhollandmt | Jun 19, 2021

In reply to @kapple "I can relate I also experience joint pain and tingling in the arms and legs I..." + (show)

I am so glad I found this site. I have gone as far as seeking therapy to explore "conversion disorder" as a cause but am finding others have similiar symptoms. That alone gives me some peace of mind. THANK you for sharing!

skp | @skhollandmt | Jun 19, 2021

In reply to @astaingegerdm "@skhollandmt - Are there any plans to remove the macroadenoma? Is the adenoma the cause of..." + (show)

I'm hopeful that it is the cause but it seems like that totally depends on whichever doctor you are talking to! We had discussed having it removed in November of last year but covid delayed everything. I reached out to Mayo at that time and have multiple consultations upcoming. I love living in Montana but definitely feel like I need a tertiary center to help find a solution. I've become so depressed over this it is hard to function. So I will wait to see if the Mayo team agrees this is myasthenia, the pituitary tumor, or something completely different.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Jun 19, 2021

In reply to @skhollandmt "Hello! Yes I was diagnosed with a slow growing macroadenoma several years ago (2018). Unfortunately the..." + (show)

@skhollandmt - Are there any plans to remove the macroadenoma? Is the adenoma the cause of your current symptoms?

kapple | @kapple | Jun 18, 2021

I can relate I also experience joint pain and tingling in the arms and legs I have been diagnosed with insulinoma

kapple | @kapple | Jun 18, 2021

In reply to @astaingegerdm "@jenniferk07 - Hi! I'm just checking to see if you heard back from your first Mayo..." + (show)

I have my appointment with Dr. Sydney Westfall July 6 hopefully she will be able to treat the pancreatic tumor/insulinoma

skp | @skhollandmt | Jun 18, 2021

In reply to @colleenyoung "Welcome @skhollandmt. Have you been diagnosed with a pituitary tumor? I look forward to learning more..." + (show)

Hello! Yes I was diagnosed with a slow growing macroadenoma several years ago (2018). Unfortunately the symptoms I have had that prompted the MRI to begin with are still very bothersome and slowly getting worse. I have such extreme fatigue, early fatigue of my muscles, difficulty with coordination, and a lot of muscle pain. I've been tested for multiple sclerosis, various cancers, and most recently myasthenia. It's very discouraging! I've resigned myself to no longer being able to enjoy the activities I used to participate in, but continue the fight to get to work and perform my job duties! So....I'm very hopeful the Mayo clinic team can help me find out what is causing my body to turn against me so I can have some quality of life and hope for the future!

Colleen Young, Connect Director | @colleenyoung | Jun 17, 2021

In reply to @skhollandmt "I'm sorry for your pain but encouraged to see your post because I have also had..." + (show)

Welcome @skhollandmt. Have you been diagnosed with a pituitary tumor? I look forward to learning more about you.

skp | @skhollandmt | Jun 17, 2021

I'm sorry for your pain but encouraged to see your post because I have also had pain for years (undiagnosised) that I've been told isn't tumor related. Thankfully Dr. Gruber has now referred me to neuromuscular! I'm very interested in following your post. The only diagnosis they've come up with is possibly myasthenia gravis but that causes fatigue and weakness, not pain.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | May 9, 2021

@jenniferk07 - Hi! I'm just checking to see if you heard back from your first Mayo visit?

jenniferk07 | @jenniferk07 | Apr 28, 2021

In reply to @cheryl1 "I went to pain doctor last week. I received 12mg fentynal patch. It doesn't help. The..." + (show)

I have also related to pain in my legs. Sometimes at night when I'm getting ready for bed and laying down I have to constantly move my legs for relief. (Restless leg syndrome)