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?

@skhollandmt

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.

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

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@colleenyoung

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

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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!

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@astaingegerdm

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

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

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

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@skhollandmt

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!

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

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@astaingegerdm

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

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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.

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@kapple

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

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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!

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@skhollandmt

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.

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@skhollandmt – it is very encouraging to hear you have appointments at Mayo! You are correct- for complicated problems you need a tertiary care facility.
If/ when the macroadenoma will be removed it is also extremely important to have it done where there is a dedicated pituitary team- such as Mayo.
My daughter had a microadenoma removed at UVA, another superb institution.

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The other thing I would throw out there for comments/feedback is that I had a negative EMG study, negative blood tests but was diagnosised with myasthenia based on response to mestinon and a eyelid droop (as well as the muscle weakness, etc.). The docs at Mayo would like to redo the EMG for more definite diagnosis ….and the mestinon helps with the fatigue and weakness for sure. But has anyone else had a connection with pituitary dysfunction/adenoma and/or myasthenia?
THANKS!

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@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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I was diagnosed with pituitary adenoma and successfully had a large tumor surgically removed almost 15 years ago. For years before my surgery, and years after my surgery, I also suffered from joint and muscle pain. It got so bad I could hardly bend over to tie my own shoes. I was suffering and in constant pain. As a young athletic person, I just couldn't understand where this pain was coming from. I then discovered cold water therapy (ice baths) and infrared saunas! (Also referred to as fire and ice therapy) I found that the combination of doing 20 minutes in my infrared Sauna and then plunging into an ice bath (40 to 55 degrees depending on what you can handle for 5 to 10 minutes) turned out to be an absolute miracle! After so many medications, physical therapy, special diets…I tried it all and spent a ton of money on my quest to find pain relief ( I even got myself addicted to pain killers and ended up in drug rehab) After all those nightmares and searching I still can't believe that something so basic and so simple as cold water therapy has literally changed my life! I can truthfully say that over 80% of my pain is gone! If you want more info you can youtube the iceman also known as Wim Hof. Wim Hof explains the benefits of ice in a much more detailed way, but get this, the rush of adrenalin from the cold also regulates hormones and is said to trigger the same opioid receptors in our brains to act as a natural pain killer! It also enhanced my overall mood and I feel much happier after an ice bath! It is such a miracle! I never have ever posted a reply on a message board like this before, but after reading your post I just had to spread the good news! Take the plunge it will change your life!

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@ananda33

I was diagnosed with pituitary adenoma and successfully had a large tumor surgically removed almost 15 years ago. For years before my surgery, and years after my surgery, I also suffered from joint and muscle pain. It got so bad I could hardly bend over to tie my own shoes. I was suffering and in constant pain. As a young athletic person, I just couldn't understand where this pain was coming from. I then discovered cold water therapy (ice baths) and infrared saunas! (Also referred to as fire and ice therapy) I found that the combination of doing 20 minutes in my infrared Sauna and then plunging into an ice bath (40 to 55 degrees depending on what you can handle for 5 to 10 minutes) turned out to be an absolute miracle! After so many medications, physical therapy, special diets…I tried it all and spent a ton of money on my quest to find pain relief ( I even got myself addicted to pain killers and ended up in drug rehab) After all those nightmares and searching I still can't believe that something so basic and so simple as cold water therapy has literally changed my life! I can truthfully say that over 80% of my pain is gone! If you want more info you can youtube the iceman also known as Wim Hof. Wim Hof explains the benefits of ice in a much more detailed way, but get this, the rush of adrenalin from the cold also regulates hormones and is said to trigger the same opioid receptors in our brains to act as a natural pain killer! It also enhanced my overall mood and I feel much happier after an ice bath! It is such a miracle! I never have ever posted a reply on a message board like this before, but after reading your post I just had to spread the good news! Take the plunge it will change your life!

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Hello @ananda33 and welcome to Mayo Clinic Connect. Thank you for joining the conversation and sharing your journey to find what is working for you. How did you come across this as a form of therapy?

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@amandajro

Hello @ananda33 and welcome to Mayo Clinic Connect. Thank you for joining the conversation and sharing your journey to find what is working for you. How did you come across this as a form of therapy?

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Hi Amanda, I came across this form of therapy while working with professional surfer and athlete Laird Hamilton. His athletic training program is called the XPT Performance training. Coldwater therapy and infrared saunas are a big part of the program.

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