Pituitary tumor symptoms: joint, muscle and body aches

I too had a pituitary tumor diagnosed about 10 years ago and thought to be prolactin secreting. I had a great deal of pain and stiffness and eventually saw an endocrinologist who did additional testing and diagnosed me with Acromegaly. This is a rare disorder but make sure you have proper testing as it can cause lots of health issues!

I too was told by Mayo back in 2017 that I had Fibromyalgia. Muscle pain was not one of my complaints. I was severely fatigued & lightheaded. Sometimes, I think Fibromyalgia is a ‘catch-all’ for unknown. Now…6 years of suffering later, I found out that I have severe stenosis of my celiac artery (in abdomen) caused by MALS. What is it w/all the Fibromyalgia diagnosis? It’s sad. 🥲

Thank you

@ralvarez38
I just checked online- i don’t see the West Palm office listing. There is one of the Cleveland Clinic hospitals as well as specialty clinics in Weston, FL.
I agree that you need to see someone soon since you are feeling worse.
What I would do is call Cleveland Clinic- in Ohio or Florida and find out where you can be seen in the near future.
If you need specific pituitary treatment I still recommend UVA in Charlottesville, VA.

Thank you. I am actually originally from Cleveland. I may just have to make a trip over to West Palm or head back home to see a specialist there if I can't get an answer soon. The pain is getting worse and worse. I have brain fog and memory issues, and I can't lose weight no matter how hard I try. There are some blood markers that are off a little bit, but no one seems concerned.

Correction:UVA is in Charlottesville, VA

@ralvarez38
My daughter’s Endocrinologist was Dr. Mary Lee Vance at UVA in Charon, VA. Amazing. She is very well known.
My daughter lived in FL at the time. After seeing awful doctors there I finally found a very knowledgeable Endocrinologist at Cleveland clinic’s new office in West Palm Beach. This was 2009-2010. She did the initial testing and recommended UVA. She didn’t think Miami university hospital was at the same level. Cleveland Clinic has a hospital on west coast of FL.

What is the name and location of the endocrinologist? I live in Florida now and I can't find one that just doesn't want to blame bad eating and diabetes. My story sounds so similar to your daughter's. I've been looking for an answer to my weight gain since college and I'm 53. I was an athlete in high school and then gained 70 pounds in 6 months. Because the basic blood panel doesn't show what they're looking for, no one will dig deeper. Please help

Did they do a neck to pelvis PET-CT with GA Dototate contrast? Any other blood work, like parathyroid hormone (PTH)? Sometimes these NETs run in packs.

Joint and bone pain, I'd suspect parathyroid adenoma.

I’m also dealing with a pituitary tumor. I went in to get answers for headache issues and that’s when they found the tumor. My blood work is fine and the tumor isn’t large enough that’d cause concern for removal. However, I’ve had a dull aching headache for over 3 years now and sudden loud noise can cause it to completely overtake my head causing a severe headache. The doctors say that the headaches aren’t related to the tumor since they’re not sinus headaches. I’ve also had muscle tightness and my neck always hurts and cracks. My whole body seems to crack/ pop a lot. Recently I’ve had my left leg from the knee down go numb and my eye dr says I have a stretch mark on my left eye and that eyes vision has gotten worse. Anyone have similar symptoms with a pituitary tumor? Did removal help? I’m to the point where I just want it out bc regardless of the doctors saying it’s not related I can’t help but feel like it might be. I always feel super fatigued and my memory has worsened.