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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@captain1950

they said it was nonproducing, but since its removal my body feels much better and my energy is slowly returning, after a prolonged absence. The surgeon said it was crushing my pituitary upward!

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Such good news! I assume it could have caused more damage if left alone.
Enjoy your recovery! How often do you have to follow up with MRIs?

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@astaingegerdm

Such good news! I assume it could have caused more damage if left alone.
Enjoy your recovery! How often do you have to follow up with MRIs?

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It was wrapped around carotid artery, and I was dizzy so?
Annuanl MRI check up, there is a small mengioma to watch!

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@captain1950

It was wrapped around carotid artery, and I was dizzy so?
Annuanl MRI check up, there is a small mengioma to watch!

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What a relief to remove the tumor from such a dangerous location.
My daughter’s adenoma also involved the carotid artery. The surgeon was 95% sure he got it all. Annual MRIs stayed normal and no symptoms since.

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@astaingegerdm

What a relief to remove the tumor from such a dangerous location.
My daughter’s adenoma also involved the carotid artery. The surgeon was 95% sure he got it all. Annual MRIs stayed normal and no symptoms since.

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The Surgeons have come a long way, I wish Her well!

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I am having same problems! Diagnosed with enlarged pituitary this last summer and have incredible pain n my joints, muscles and nerves, feel as if my joints are dissolving, getting worse daily!!Endocrinologist found a low sodium level, so was on restricted fluid for several weeks, getting blood tests every day for a week, sodium level back up to normal, still no change🤷🏼‍♀️!
Neural surgeon wants to “wait and see”, new MRI is in July!!
Meantime I am suffering and getting worse every day!!
Found a new GP, thankfully, who LISTENED, and is sending me for a bunch of blood tests and referring me to a chronic pain clinic!
Any suggestions gratefully accepted

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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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Me too, on the search for help!

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@captain1950

The Surgeons have come a long way, I wish Her well!

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Hello @captain1950

As it has been a while since you last posted, I was wondering how you are doing. Have you had anymore follow-up scans? How are you feeling?

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In 2000 I had 2 pituitary tumor operations. Large tumor, but they had to take out the p-gland and I have had full hormone replacement since, I turn 60 in a couples of months. I am having pain that sometimes is off the scale. The dr. say's it has no correlation to the pnet I have. I beg to differ. They don't know enough about this cancer to really know. I have 23 tumors in and on my liver with that many or more on my lymph glands and else were within my upper torso. I had no pain with the pituitary issue but that was me and we are all different. Hang in their and get a specialist in net for sure.

Anthony

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@astaingegerdm

What a relief to remove the tumor from such a dangerous location.
My daughter’s adenoma also involved the carotid artery. The surgeon was 95% sure he got it all. Annual MRIs stayed normal and no symptoms since.

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My first surgery was 22 years ago and she messed up and took less than 5% of the tumor out so 8 mo's later I went to UVA and they did the job right. I have had no problems since except dealing with hormone replacement. The tumor got pissed off after the first surgery and wrapped around the artery and they took out as much as they could and I still have had no issues besides the net that has given me problems. I think she will do just fine. They did have to take the gland out but you can survive with just the stalk of the P-gland.

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@georgiamartin

I am having same problems! Diagnosed with enlarged pituitary this last summer and have incredible pain n my joints, muscles and nerves, feel as if my joints are dissolving, getting worse daily!!Endocrinologist found a low sodium level, so was on restricted fluid for several weeks, getting blood tests every day for a week, sodium level back up to normal, still no change🤷🏼‍♀️!
Neural surgeon wants to “wait and see”, new MRI is in July!!
Meantime I am suffering and getting worse every day!!
Found a new GP, thankfully, who LISTENED, and is sending me for a bunch of blood tests and referring me to a chronic pain clinic!
Any suggestions gratefully accepted

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Try and go to palliative care, they carry more weight than a pain clinic does. These days it is hard to get pain meds do to the reaction of the masses and scare tactics from the news. This is what it is for. Good luck.
Anthony

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