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.

Profile picture for arronb @arronb

I am dealing with same issue. 5/24/23 found a pituitary tumor 1.3 cm. For over a year muscle pain, fatigue, dizziness, digestive issues, hurting hand and joint pain. Did removal of tumor help? I am going to mayo clinic flagstaff this month.

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I’m also dealing with pain in neck and shoulders. It’s like tense and muscles are very tight. Did yours feel like that? Did you have a constant headache? Doctor says it’s unrelated. Has the surgery fixed your aches and fatigue? Just recently had my left leg from knee down go numb and eye dr saying I have stretch mark in left eye. I have appointment this week and I want to tell them I just want it removed. Curious how you’re feeling post surgery.

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I am a 34 year old male who just got diagnosed with acromegaly disease, caused by a pituitary adenoma. July 6th I had surgery to remove tumor and am waiting for 6 week blood test to see if high igf-1 levels start to stabilize. My symptoms were fatigue, sweating, body aches, dizziness, brain fog, joint pain, joint poping, digestion issues and body numbness. My question is has anybody had this situation and after surgery did symptoms get better? How long did it take and did surgery put your acromegaly into remission.

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Hello will you please write me to discuss your symptoms. I have been trying to contact you for awhile and no response. You and I seem to have dealt with same thing and being you before me, how are you these day. Did you have surgery and are your symptoms better?

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Profile picture for skp @skhollandmt

I had symptoms of weakness, numbness to the right side of the body mostly with headaches, fatigue. Many symptoms. Told they weren't related to the tumor (1.5 cm) because hormones weren't elevated. HOWEVER, my symptoms resolved IMMEDIATELY following tumor removal. So how the tumor was affecting me is still an unknown but all I know is after it was gone my life changed for the better!
Good luck,
Steph

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So within a week your symptoms were resolved, that's great. I'm still dealing with fatigue, carpol tunnel and joint poping and some neck/shoulder pain. I'm hoping it goes away and being positive, only 10 days past my surgery. It's so weird cause most these symptoms which us pituitary adenoma people have, doctors will say unrelated. In my research body aches, carpol tunnel, fatigue, numbness, tingling, ear ringing, joint pain or poping seem to be common. Thank you for your reply.

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Profile picture for arronb @arronb

Hello. January 2022 my life changed, I developed very weird symptoms and no doctors have been able to figure it out. Was just diagnosed with a pituitary tumor 5/24/23, 1.3 cm and harmon testing shows growth harmon not causing to many harmons. Is it the tumor or something else....? I experience fatigue, dizziness, hand pain, arm pain, numbness legs/hands, light headaches, vision issues and horrible joint popping. My neck pops, fingers, wrist, elbows, hips, knees, feet and chest. I have tried many supplements, hot cold therapy and stretching but nothing. Doctor said I had carpal tunnel and last week I saw a Dr at mayo clinic scottsdale AZ, he did harmon test and wants another MRI. Harmon tests like I said seem normal so far. Anybody have this issue, if so please help.

Jump to this post

I had symptoms of weakness, numbness to the right side of the body mostly with headaches, fatigue. Many symptoms. Told they weren't related to the tumor (1.5 cm) because hormones weren't elevated. HOWEVER, my symptoms resolved IMMEDIATELY following tumor removal. So how the tumor was affecting me is still an unknown but all I know is after it was gone my life changed for the better!
Good luck,
Steph

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Profile picture for Colleen Young, Connect Director @colleenyoung

Hi @arronb, I'm sorry to hear that you do not yet have answers for your symptoms. I'm glad to hear that you were able to seek care at Mayo Clinic. Were you diagnosed with a pituitary neuroendocrine tumor (PitNET)? What did the MRI show?

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MRI showed a small tumor and blood work high igf-1. I was diagnosed with acromegaly disease and July 6th I had my tumor removed. I'm currently at home recovering. Some symptoms are still here, I'm worried about my joints and hope we caught this rare disease early enough. I wish there were more people who relate who can talk with me.

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Profile picture for arronb @arronb

Hello. January 2022 my life changed, I developed very weird symptoms and no doctors have been able to figure it out. Was just diagnosed with a pituitary tumor 5/24/23, 1.3 cm and harmon testing shows growth harmon not causing to many harmons. Is it the tumor or something else....? I experience fatigue, dizziness, hand pain, arm pain, numbness legs/hands, light headaches, vision issues and horrible joint popping. My neck pops, fingers, wrist, elbows, hips, knees, feet and chest. I have tried many supplements, hot cold therapy and stretching but nothing. Doctor said I had carpal tunnel and last week I saw a Dr at mayo clinic scottsdale AZ, he did harmon test and wants another MRI. Harmon tests like I said seem normal so far. Anybody have this issue, if so please help.

Jump to this post

Hi @arronb, I'm sorry to hear that you do not yet have answers for your symptoms. I'm glad to hear that you were able to seek care at Mayo Clinic. Were you diagnosed with a pituitary neuroendocrine tumor (PitNET)? What did the MRI show?

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Hello and thank you for your post. I too have a pituitary tumor and in one week am removing it at PNI in California. I have horrible body aches, joint poping and feel like a old man when I wake up. I too started cold plunges but I still hurt. Did removal of pituitary tumor help with muscle and joint pain?

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Hello. January 2022 my life changed, I developed very weird symptoms and no doctors have been able to figure it out. Was just diagnosed with a pituitary tumor 5/24/23, 1.3 cm and harmon testing shows growth harmon not causing to many harmons. Is it the tumor or something else....? I experience fatigue, dizziness, hand pain, arm pain, numbness legs/hands, light headaches, vision issues and horrible joint popping. My neck pops, fingers, wrist, elbows, hips, knees, feet and chest. I have tried many supplements, hot cold therapy and stretching but nothing. Doctor said I had carpal tunnel and last week I saw a Dr at mayo clinic scottsdale AZ, he did harmon test and wants another MRI. Harmon tests like I said seem normal so far. Anybody have this issue, if so please help.

REPLY
Profile picture for georgiamartin @georgiamartin

been going through same things for 2 years!!! Pain getting worse daily....whole med team now!!! I am seeing my neurosurgeon on 5ec 21 and will say, " I want this tumor out NOW!! " the pain is debilitating! changed GP's because she ever said for 2 years was , "I don't understand what you are driving"
Anyway, can't afford the $50K to go to Mayo so will continue to push and advocate for myself in Alberta!! The Canadian Med system is not all it is cracked up to be!! I am on the journey and Will win!!

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I am dealing with same issue. 5/24/23 found a pituitary tumor 1.3 cm. For over a year muscle pain, fatigue, dizziness, digestive issues, hurting hand and joint pain. Did removal of tumor help? I am going to mayo clinic flagstaff this month.

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