Pituitary tumor symptoms: joint, muscle and body aches

Posted by khauert @khauert, Jan 12 4:46pm

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?

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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@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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Welcome to Connect, @khauert. I moved both your messages to this discussion and added it to the Brain Tumor group as well the NETs group. I did this so that members could get the full picture and to bring fellow members together, like @ladydove417 @dmedina71 @astaingegerdm @sandysdoves @gemttaz and others who may have experience to share with you about pituitary tumor and joint and muscle pain and body aches.

You can also read about others with pituitary tumors in this discussion
– Looking for others with Pituitary Adenoma https://connect.mayoclinic.org/discussion/i-like-to-now-if-their-is-anyone-who-has-been-diagnosed/

Are you getting treatment at this point to help manage the ache and pain? How do you manage it? Might it be related to medication you're taking?

Liked by Lisa Lucier

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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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@khauert May I ask what kind of pituitary tumor you were diagnosed with? My daughter was diagnosed with a pituitary adenoma causing Cushing’s disease- excessive cortisol. However, about 10 years before this diagnosis she was diagnosed with fibromyalgia- I mean chronic, severe pain.

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@astaingegerdm

@khauert May I ask what kind of pituitary tumor you were diagnosed with? My daughter was diagnosed with a pituitary adenoma causing Cushing’s disease- excessive cortisol. However, about 10 years before this diagnosis she was diagnosed with fibromyalgia- I mean chronic, severe pain.

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I was diagnosed with a prolactinoma pituitary tumor. However, in all honesty, I think the doctors question what kind of tumor it really is. For prolactinoma, my prolactin level should be in the hundreds and thousands. My blood work showed it was at 57- high enough its a problem, but not high enough to be prolactinoma. The following was diagnosis from a variety of docs I saw: 1st primary physician- carpel tunnel, 2nd primary physician- I am over weight. Rheumatologist- 1st visit-I have gout. 2nd visit- fibromyalgia. 3rd visit depression. When I saw my endochronologist, he said it was my weight; the tumor had nothing to do with the pain. When I saw the neurologist he didn't even want to hear about my symptoms. His goal is to get the tumor out. With obvious frustration, I called Mayo and thankfully, I see an endochronolgist and a neurosurgeon soon. In the mean time, I have been researching pituitary tumors and joint/muscle pain, and I fall short every time. Then it dawned on me to research hypothyroidism (which I was diagnosed with when the tumor was found November '19). I have all the symptoms of hypothyroidism, one being sever muscle/joint/bone pain, swollen hands/fingers and feet, and carpel tunnel like symptoms, to name a few. All those symptoms are a result of nerve damage from hypothyroidism going untreated. I noticed something "off" with my body almost 2 years ago. I just assumed it was because I am aging, not as active, overweight. Turns out the tumor and hypothyroidism has slowing been creeping up on me. And interestingly enough, I stumbled across an article (that I didn't save and can't find on the internet) that quoted a doctor. He said the patients need to listen to what our bodies are telling us and not always go by what our blood work shows. I guess blood work doesn't always show there is a thyroid issues because our hormone levels change throughout the day. He advised to talk to the doctor about all the symptoms regardless of the blood work results. I know this was lengthy, but I hope it helps. My next research is going to be nerve damage and how/if/when it will heal and I hope I will be pain free once my hypothyroidism gets back to normal.

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@khauert – Thanks for your detailed answer! First of all- you will eventually find out what’s happening to you when you see the Mayo doctors. Your story sounds similar to my daughter’s story. She was healthy enough through high school – competitive swimmer too. In college she first got very sick with mono -2 nd time. She started to put on a lot of weight- she was eating a lot and no exercise. In her teens she was diagnosed with fibromyalgia. It got much worse in college. Had to stop swimming, received lidocaine infusions. At the end of high school she was diagnosed with depression. After college she moved to FL for work. Dx bipolar disorder. Big weight gain, hypothyroid, diabetes, infections. Finally, her psychiatrist (!) diagnosed her with Cushing’s disease. The same week she had seen her endocrinologist for diabetes who yelled at her for being fat, she saw her internist and cardiologist- she had tachycardia and cardiologist just put her on medication without wondering why.
Anyway, we helped find a superb endocrinologist- diagnosed pituitary adenoma- Cushing’s disease- with excessive cortisol production. She was then referred to a dedicated pituitary center at a major university hospital. Tumor removed.
This shows how our bodies can fool us and why many people don’t get diagnosed for years. It is great that you will go to Mayo!!

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@khauert

I was diagnosed with a prolactinoma pituitary tumor. However, in all honesty, I think the doctors question what kind of tumor it really is. For prolactinoma, my prolactin level should be in the hundreds and thousands. My blood work showed it was at 57- high enough its a problem, but not high enough to be prolactinoma. The following was diagnosis from a variety of docs I saw: 1st primary physician- carpel tunnel, 2nd primary physician- I am over weight. Rheumatologist- 1st visit-I have gout. 2nd visit- fibromyalgia. 3rd visit depression. When I saw my endochronologist, he said it was my weight; the tumor had nothing to do with the pain. When I saw the neurologist he didn't even want to hear about my symptoms. His goal is to get the tumor out. With obvious frustration, I called Mayo and thankfully, I see an endochronolgist and a neurosurgeon soon. In the mean time, I have been researching pituitary tumors and joint/muscle pain, and I fall short every time. Then it dawned on me to research hypothyroidism (which I was diagnosed with when the tumor was found November '19). I have all the symptoms of hypothyroidism, one being sever muscle/joint/bone pain, swollen hands/fingers and feet, and carpel tunnel like symptoms, to name a few. All those symptoms are a result of nerve damage from hypothyroidism going untreated. I noticed something "off" with my body almost 2 years ago. I just assumed it was because I am aging, not as active, overweight. Turns out the tumor and hypothyroidism has slowing been creeping up on me. And interestingly enough, I stumbled across an article (that I didn't save and can't find on the internet) that quoted a doctor. He said the patients need to listen to what our bodies are telling us and not always go by what our blood work shows. I guess blood work doesn't always show there is a thyroid issues because our hormone levels change throughout the day. He advised to talk to the doctor about all the symptoms regardless of the blood work results. I know this was lengthy, but I hope it helps. My next research is going to be nerve damage and how/if/when it will heal and I hope I will be pain free once my hypothyroidism gets back to normal.

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I am a Physical Therapist with issues on how the thyrioid can affect enzymes crossing the brain barrier. Your question is how nerves heal. A nerve will re-grow at a predictable rate. So much a month.
As an example a 1/4 of an inch a month. So, re-innervation depends on the distance of the lesion from the target site. A nerve has a myelin sheath. It has periodic gaps. A current travels the sheath by jumping from one gap to the next. If this sheath is damaged, the impulse has no hi-way. With relief from the cause, the nerve will also heal approximately the same 1/4 inch a month. We are talking normal people with nerve compression , injury, or toxic situations. De-mylination is chronic in some diseases . Hope that help.

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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.

Jump to this post

Check Hypothyriod syndri0me

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Yes I am going to mayo. They confirmed I have Cushings disease. Horrible. My cortisol test very high. Cyst in pituatary

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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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Same here. Have a cortisol and acth test done for cushings

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@astaingegerdm

@khauert May I ask what kind of pituitary tumor you were diagnosed with? My daughter was diagnosed with a pituitary adenoma causing Cushing’s disease- excessive cortisol. However, about 10 years before this diagnosis she was diagnosed with fibromyalgia- I mean chronic, severe pain.

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I was told 4 years ago at mayo in Jacksonville I had fibromyalsia. 4 months ago mayo now knows I have Cushings I had pss December 3rd having ipss march 13 I hope they can locate tumor

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@cheryl1

I was told 4 years ago at mayo in Jacksonville I had fibromyalsia. 4 months ago mayo now knows I have Cushings I had pss December 3rd having ipss march 13 I hope they can locate tumor

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@cheryl1 – I’m glad you have a diagnosis but sorry it’s Cushing’s. Actually, I think the hardest time is time spent before getting a diagnosis.
In 2 weeks it’s 10 years ago that my daughter had her surgery to remove her pituitary adenoma. The body will return to normal afterwards. My daughter had gained a lot of weight which caused the characteristic purple striae- stretch marks. Her goal now is to eventually have plastic surgery to remove the extra abdominal skin. She is in good health, working hard and keeping fit.
I hope all goes well with you. Mayo is a great place for this. Whenever you have time and energy I would appreciate an update.

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So nice to hear from you. I can only imagine what you have been going through. I have one child Kara, she is 24 yrs old. Just the thought of her having cushings bothers me. I pray your daughter is doing well and she has a rewarding, beautiful life!

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@cheryl1

So nice to hear from you. I can only imagine what you have been going through. I have one child Kara, she is 24 yrs old. Just the thought of her having cushings bothers me. I pray your daughter is doing well and she has a rewarding, beautiful life!

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@cheryl1 – Thank you for your kind words! You are right- to see your child go through this is a nightmare.

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@cheryl1 – Did you get the cortisol and ACTH testing done in Jacksonville? Endocrinologist? Any MRI yet?

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@astaingegerdm

@cheryl1 – Did you get the cortisol and ACTH testing done in Jacksonville? Endocrinologist? Any MRI yet?

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Yes MRI cortisol and acth. Dexamethasone suppression 3 times. MRI done locally in lake county and mri done at Mayo. Both showed tumor/ cysts. Dr Chaichanna did pss Dec 3rd. Removed tissue in area. Did not stain for acth. My levels are worse now and my glucose is horrible since procedure. The pathology report states tissue of pituatary. Going for ipss scheduled march 12th at mayo in jacksonville. I feel like I am slowly dying and have no life. Cheryl

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