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 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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I had my pituitary surgery x2, 20 years ago, and was told there is no correlation, but hormones are hormones and I will tell you this... I had very little pain before the Pnet and was told there is no pain with this cancer. Idiots!!!! I live with the most horrible pain and hardly anything will touch it and i'm taking enough meds to kill a small herd of cattle. I don't know what to say ,but just hold on for the ride. If you ever need to talk let me know and we will get together and see whats new. Just let me know. Take care,

Anthony

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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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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @ladyj5 and welcome to Mayo Connect. As you may know, those of us on Mayo Connect are not medical professionals, we are just patients like yourself who support and encourage each other. Based on what you have said, I would highly recommend that you seek a second opinion. At the very least, you should contact your doctor's office and ask for a referral to a specialist.

I would suggest that if you seek a second opinion, that you look for a multi-disciplinary medical center (like Mayo Clinic) or a university medical center in your area. If you would like a consultation at a Mayo Clinic facility, here is information for seeking an appointment, http://mayocl.in/1mtmR63.

I look forward to hearing from you again as you look for another doctor who can give you more help with this problem. Will you post again and let me know how you are doing?

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Thanks, I will keep you updated. Thanks for the information.

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Profile picture for ladyj5 @ladyj5

This is the second time my asking this and no reply. I was diagnosed on July 10/2023 with pheochromocytoma by plasma blood work. My PCP have never treated this condition. My B/P is out of control. All the scans no tumor is found now what do we do next? Some days I can hardly function from taking so much pressure medications. Please respond.
LadyJ

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Hello @ladyj5 and welcome to Mayo Connect. As you may know, those of us on Mayo Connect are not medical professionals, we are just patients like yourself who support and encourage each other. Based on what you have said, I would highly recommend that you seek a second opinion. At the very least, you should contact your doctor's office and ask for a referral to a specialist.

I would suggest that if you seek a second opinion, that you look for a multi-disciplinary medical center (like Mayo Clinic) or a university medical center in your area. If you would like a consultation at a Mayo Clinic facility, here is information for seeking an appointment, http://mayocl.in/1mtmR63.

I look forward to hearing from you again as you look for another doctor who can give you more help with this problem. Will you post again and let me know how you are doing?

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This is the second time my asking this and no reply. I was diagnosed on July 10/2023 with pheochromocytoma by plasma blood work. My PCP have never treated this condition. My B/P is out of control. All the scans no tumor is found now what do we do next? Some days I can hardly function from taking so much pressure medications. Please respond.
LadyJ

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Profile picture for dearley @dearley

I too was told by Mayo back in 2017 that I had Fibromyalgia. Muscle pain was not one of my complaints. I was severely fatigued & lightheaded. Sometimes, I think Fibromyalgia is a ‘catch-all’ for unknown. Now…6 years of suffering later, I found out that I have severe stenosis of my celiac artery (in abdomen) caused by MALS. What is it w/all the Fibromyalgia diagnosis? It’s sad. 🥲

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@dearley
I hope you had the MALS surgery and that you are OK. I had the same- it took 7 years before diagnosis. I had MALS surgery 2015 and a stent placed shortly after. I had another stent placed last fall after a time of pain and other GI symptoms.
I don’t know why you got the Fibromyalgia diagnosis- no pain. Fibromyalgia actually is a recognized disease now. There are still many physicians who don’t know enough about how to diagnose it. I have it, not bad now. My youngest daughter was diagnosed at 15, my son at 10 and recently my oldest daughter. All diagnosed by a rheumatologist.

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