Pituitary tumor symptoms: joint, muscle and body aches

Have you found a solution/cause for your pains?

36 years ago I had terrible dizziness and pressure in my head. I lived in CA and had an MRI and was told I had a pituitary tumor. Neurosurgeon did a biopsy, no cancer. Tumor continues to expand. Three doctors didn’t know what was wrong. Hormones were normal. Was finally approved for treatment at UCLA in Los Angeles. Removed 90% of my pituitary gland, not for a tumor, but because it looked very abnormal. Both times after surgery, I was inpatient for 8 days. Treated really well. Started on replacement hormones and did ok for many years. I had lots of joint and muscle pain and was told it was from the replacement meds. I get dehydrated really easily because of diabetes insipidus. I have been having ear pain, facial pain, eye pain and sharp, stabbing pain and pressure all around my head, since August, last year. I now live in MN to be near my granddaughters. My doctors have different opinions on what is or isn’t happening. One said that I don’t have a pituitary gland, but a small tumor that is not causing my problems. Another doctor said he agreed with the first doctor and said I had a gland, but it is not working and I just needed my meds adjusted. I have lived 33 years without a pituitary gland and am now experiencing symptoms that is similar to when I had my surgeries in CA. I am so frustrated with the health care system and insurance companies

Hi how are you? I’m going through the same thing right now but my Dr checked my Vitamin D levels and I was severely low so apparently that’s what was causing the joint pain it isn’t related to the adenoma or prolactinoma did you ever get this sorted out ?

@khauert
I have been living in pain for 20 years. Joint and body. I was taking handfuls of ibuprofen. It kept getting worse. Now I live on methadone. Just found out about my pituitary tumor. It has been a struggle to get my HGH. Which I know will help. I am hoping to have it removed and pray all goes back to normal.

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! Thank you for this information, it's very helpful. My endocrinologist has already begun the process of referral to a neurosurgeon & because I'm on an HMO, I have to go where they're networked. I was hoping to go to Sacramento, to UC Davis but i just found out i must go to Stanford, in Palo Alto, CA which is about 100 miles away from where I live! That's going to be quite an adventure to go there, in bay area traffic. I guess, if I want top notch health care, Stanford is a good choice. I will definitely discuss the issues you outlined with the neurosurgeon, when & if I get there (hopefully in one piece!).

@pam56
Hello, I had a pituitary removed in 2016. By 2020, more came back. If cells are left behind they can grow back, I did not think to ask my surgeon how do they get rid of all the cells. Even though these tumors are not cancerous they can be life threatening. Meaning, if they grow and attach on the carotid artery that leads to the brain it can be fatal depending the the size and location because the tumor can cut off blood flow. Or, if it grows and presses against the optic nerve a person can loose sight. Either way its better to get them taken care of before they do become problematic for the surgeon especially depending on location. Ask your surgeon to show you exactly where its located. Once you see, then ask about complications. I did not do that. I wish I did because I lost my sense of smell. Because the instrument they use to go into your nose can damage the smell sensors in your nose like mine. Note: If your Primary doctor seems laxed about your condition, get a second opinion and see a team of specialized neurologist who can help you promptly.