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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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cheryl1 | @cheryl1 | Feb 29, 2020

1000mg metformin twice a day. How is your daughter? She has and must be one of the strongest of the young for what she is going through. I don't know if I am that strong. Don't think so. Cheryl

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 29, 2020

@cheryl1 - hang in there! Hope they can locate tumor soon so you can get rid of it. Do you take anything for the blood sugar? My daughter had to take insulin Up to her surgery- her sugar went back down at once postop.

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cheryl1 | @cheryl1 | Feb 29, 2020
In reply to @astaingegerdm "@cheryl1 - Did you get the cortisol and ACTH testing done in Jacksonville? Endocrinologist? Any MRI..." + (show)
@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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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 28, 2020

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

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2 replies
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 27, 2020
In reply to @cheryl1 "So nice to hear from you. I can only imagine what you have been going through...." + (show)
@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 | @cheryl1 | Feb 27, 2020

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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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 27, 2020
In reply to @cheryl1 "I was told 4 years ago at mayo in Jacksonville I had fibromyalsia. 4 months ago..." + (show)
@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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cheryl1 | @cheryl1 | Feb 25, 2020
In reply to @astaingegerdm "@khauert May I ask what kind of pituitary tumor you were diagnosed with? My daughter was..." + (show)
@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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1 reply
cheryl1 | @cheryl1 | Feb 25, 2020
In reply to @khauert "Hi. I have been experiencing excruciating and debilitating joint and muscle pain for several months now...." + (show)
@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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cheryl1 | @cheryl1 | Feb 25, 2020

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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