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?

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arronb | @arronb | Jul 15, 2023
In reply to @colleenyoung "Hi @arronb, I'm sorry to hear that you do not yet have answers for your symptoms...." + (show)
@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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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 11, 2023
In reply to @arronb "Hello. January 2022 my life changed, I developed very weird symptoms and no doctors have been..." + (show)
@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.

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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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1 reply
arronb | @arronb | Jun 30, 2023

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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arronb | @arronb | Jun 16, 2023

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.

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2 replies
arronb | @arronb | Jun 6, 2023
In reply to @georgiamartin "been going through same things for 2 years!!! Pain getting worse daily....whole med team now!!! I..." + (show)
@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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1 reply
arronb | @arronb | Jun 6, 2023

Did you ever find out if the tumor caused you these issues? I'm dealing with same thing you are, just found my tumor but dealing with bad body aches and very depressed.

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arronb | @arronb | May 26, 2023
In reply to @khauert "Hi. I have been experiencing excruciating and debilitating joint and muscle pain for several months now...." + (show)
@khauert

Hi. I have been experiencing excruciating and debilitating joint and muscle pain for several months now. My lab work clears me of any rheumatoid issues. However, my rheumatologist diagnosed me with gout. I was on Allopurinol for a couple months with symptoms only worsening. I stopped the medication because I don't have the other typical gout symptoms. My primary doc, endocronologist, and podiatrist also ruled gout out. I was diagnosed with a pituitary tumor in November. I can't find a doctor who can help. Nobody seems to know why I have body pain and nobody can tell me if it relates to the tumor. I am ver frustrated living like this. I am just wondering if anyone else out there with a pituitary tumor might be experiencing constant cracking bones and popping joints with awful body pain that affects their daily activities/routine.

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Hello... I read your issues and am wondering if you ever figured out your issue? I am experiencing the same thing.

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lidiana | @lidiana | Dec 24, 2022
In reply to @astaingegerdm "@lidiana You mention a neoplasm found on laparoscopy- can you go into more detail?" + (show)
@astaingegerdm

@lidiana
You mention a neoplasm found on laparoscopy- can you go into more detail?

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@astaingegerdm uterine

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Dec 24, 2022

@lidiana
You mention a neoplasm found on laparoscopy- can you go into more detail?

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1 reply
lidiana | @lidiana | Dec 24, 2022
In reply to @astaingegerdm "@lidiana - I’m sorry that you are so sick! Can you tell me what brought you..." + (show)
@astaingegerdm

@lidiana - I’m sorry that you are so sick! Can you tell me what brought you to the ER?
Did you have the MRI there?
A skilled radiologist should be able to tell the difference between a tumor and a cyst. Do you have a follow up appointment after your ER visit? Neurologist?
As far as I have learned from reading about pineal cysts they are not that uncommon, but they have to be followed. Obviously, if they get large they can cause problems too.
A Neurology follow up is very important so that you will know if the cyst is causing your current problems and also what are you supposed to do.

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@astaingegerdm im trying to get help with neurologist but they seem not concerned even tho I’m extremely symptomatic and not thanks to a laparoscopy I found other positive neoplasm. I’m so sick and tired of the gaslighting. I hope this stops for the good of everyone since we literally are killing each other with indifference and lack of care. This is not what God call us to do and we keep missing his point. I’m so scared of the heartless humans in medical fields and out of it as well.

Accountability it’s non existent in this fields apparently 😞

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