Pituitary tumor symptoms: joint, muscle and body aches

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!

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

@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.

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.

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.

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.