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 cheryl1 @cheryl1

I am going to pain management doctor and a physical trainer to rebuild muscle. Cushings disease has taken away all of my muscle. I find it difficult to even walk due to all the damage this disease has created.

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Hola

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Profile picture for chiggins81 @chiggins81

@khauertkhauert did you ever get answers to what was causing the pain? I have had pain for years and no answers

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I'm tagging @khauert to make sure they see your question about finding the cause of their pain.

@chiggins81, have you also been diagnosed with a pituitary tumor?

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@khauertkhauert did you ever get answers to what was causing the pain? I have had pain for years and no answers

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Profile picture for Ingegerd Enscoe, Alumni Mentor @astaingegerdm

@cheryl1 - You are right, Cushing’s does a lot of damage to your body. Good thing though, your muscles will return. I remember my daughter actually needed pelvic floor physical therapy- all muscles are affected.
Bone density is also diminished- my daughter’s kidneys showed very tiny calcium deposits- causing blood in urine. This went back to normal fairly soon too. The body will repair itself -
Wishing you a speedy recovery without much pain.

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Thankyou so much for responding.I am going to the endricinologist this week so hopefully I will get more answers.They are not finding much.They did find a Borderline antibody for Myasthenia Gravis too.I dont know if it is possible to have MG and Cushings at the same time.

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Profile picture for Ingegerd Enscoe, Alumni Mentor @astaingegerdm

@cheryl1 - You are right, Cushing’s does a lot of damage to your body. Good thing though, your muscles will return. I remember my daughter actually needed pelvic floor physical therapy- all muscles are affected.
Bone density is also diminished- my daughter’s kidneys showed very tiny calcium deposits- causing blood in urine. This went back to normal fairly soon too. The body will repair itself -
Wishing you a speedy recovery without much pain.

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Hello!I have been ill for over a year and I am trying to figure out what I have.The specialists have not been much help.I just saw that you mentioned your daughter having a weak pelvis from Cushings.I met with a neurologist who thinks I might have a metabolic muscular disease.I had blood tests done that showed low deha sulfate.When I looked that up I saw Addison's Disease can cause that.I thought I might have Cushings though.I keep on gaining weight and have no control over it and the muscle is completely gone in my arms,legs,pelvis,etc.I haveva big belly,arms and legs though.I saw that Cushings is usually skinny arms and legs.
Have you seen any cases where the deha sulfate in Cushings would be low instead of high?

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I had surgery on 14.12.23 to remove tumor on pituitary gland. I was allowed home in 4 days but due to drop in sodium levels was readmitted and then home again on 24.12.23. Since then I have had constant ache at the back of my nose and in front of my head. I take pain killers every day. Can anyone tell me is this normal and if so when will these symptoms improve. I feel worse now than before I had the surgery which is a shame. Thank you in anticipation of responses. Matt.

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @jenirog70,

I'm so glad that you posted about your positive experience at Mayo Clinic. It sounds like you have a great deal of confidence in your medical team, which is so important! I see from a previous post that your surgery will be on December 7. Will you be able to have someone with you?

I look forward to hearing from you again.

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Good morning, my son and his fiancé will be staying with me in Rochester for the duration. It entails the procedure on one day and a sinus debravement 5-7 days after. And sooo many appointments! I’m forever grateful they can come with me. I’m so excited. I’ve had a migraine for 5 months constantly from the tumor.

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Profile picture for jenirog70 @jenirog70

I am in Rochester. It has been an incredible experience coming here. I am from Chicago. I felt that going to University of Chicago was good medical care before. Mayo is so different. My team is so talented and thorough. The testing is lighting fast. From my first visit to surgery is 4 weeks! With a visit between for appointments. Yes it’s costing me for the medical vacations but, I wouldn’t have it any other way!

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Hello @jenirog70,

I'm so glad that you posted about your positive experience at Mayo Clinic. It sounds like you have a great deal of confidence in your medical team, which is so important! I see from a previous post that your surgery will be on December 7. Will you be able to have someone with you?

I look forward to hearing from you again.

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I am in Rochester. It has been an incredible experience coming here. I am from Chicago. I felt that going to University of Chicago was good medical care before. Mayo is so different. My team is so talented and thorough. The testing is lighting fast. From my first visit to surgery is 4 weeks! With a visit between for appointments. Yes it’s costing me for the medical vacations but, I wouldn’t have it any other way!

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Profile picture for jenirog70 @jenirog70

I have the same symptoms with my pituitary tumor. I’m getting it removed at Mayo on December 7th. I’m very hopeful that the symptoms go away after surgery.

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Hi @jenirog70, you will be in good hands at Mayo Clinic. Which Mayo location are you going to? Is it your first visit to Mayo?

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