Pituitary tumor symptoms: joint, muscle and body aches

My first symptom of a problem was galactorrhea at about age 34--my son was 5 and I was not longer breastfeeding. I reported to the OB but he was not concerned. I would have times with weight gain no matter what I did, then loss, carpal tunnel syndrome, intermittent insomnia--sort of waxing and waning stuff. After a hysterectomy at age 52- I developed galactorrhea again and this time a prolactin level was checked- it was high--an MRI then showed an 8-9 mm pituitary tumor. An IGF-1 level was checked but was in the high normal range so I went on cabergoline--I noticed that my wrists and fingers seemed a little smaller but didn't think much of it. When I saw endo #3 she had reviewed my medical record and walked in the room and said I think you have Acromegaly! She put together the pieces of hypertension, colon polyps, carpal tunnel syndrome, wedding ring enlargement, asked to see pictures and ordered repeat labs and the were elevated. I was referred for surgery in 2015 and age 53. This did not cure me and I have been on and off meds for years and now have a 5 mm recurrent tumor. Quite the story! On average it is about 10+ years to diagnose Acromegaly.

@dearley
I hope you had the MALS surgery and that you are OK. I had the same- it took 7 years before diagnosis. I had MALS surgery 2015 and a stent placed shortly after. I had another stent placed last fall after a time of pain and other GI symptoms.
I don’t know why you got the Fibromyalgia diagnosis- no pain. Fibromyalgia actually is a recognized disease now. There are still many physicians who don’t know enough about how to diagnose it. I have it, not bad now. My youngest daughter was diagnosed at 15, my son at 10 and recently my oldest daughter. All diagnosed by a rheumatologist.

This is the second time my asking this and no reply. I was diagnosed on July 10/2023 with pheochromocytoma by plasma blood work. My PCP have never treated this condition. My B/P is out of control. All the scans no tumor is found now what do we do next? Some days I can hardly function from taking so much pressure medications. Please respond.
LadyJ

Hello @ladyj5 and welcome to Mayo Connect. As you may know, those of us on Mayo Connect are not medical professionals, we are just patients like yourself who support and encourage each other. Based on what you have said, I would highly recommend that you seek a second opinion. At the very least, you should contact your doctor's office and ask for a referral to a specialist.

I would suggest that if you seek a second opinion, that you look for a multi-disciplinary medical center (like Mayo Clinic) or a university medical center in your area. If you would like a consultation at a Mayo Clinic facility, here is information for seeking an appointment, http://mayocl.in/1mtmR63.

I look forward to hearing from you again as you look for another doctor who can give you more help with this problem. Will you post again and let me know how you are doing?

Thanks, I will keep you updated. Thanks for the information.

I have the same symptoms with my pituitary tumor. I’m getting it removed at Mayo on December 7th. I’m very hopeful that the symptoms go away after surgery.

I had my pituitary surgery x2, 20 years ago, and was told there is no correlation, but hormones are hormones and I will tell you this... I had very little pain before the Pnet and was told there is no pain with this cancer. Idiots!!!! I live with the most horrible pain and hardly anything will touch it and i'm taking enough meds to kill a small herd of cattle. I don't know what to say ,but just hold on for the ride. If you ever need to talk let me know and we will get together and see whats new. Just let me know. Take care,

Anthony

Hi @jenirog70, you will be in good hands at Mayo Clinic. Which Mayo location are you going to? Is it your first visit to Mayo?

I am in Rochester. It has been an incredible experience coming here. I am from Chicago. I felt that going to University of Chicago was good medical care before. Mayo is so different. My team is so talented and thorough. The testing is lighting fast. From my first visit to surgery is 4 weeks! With a visit between for appointments. Yes it’s costing me for the medical vacations but, I wouldn’t have it any other way!

Hello @jenirog70,

I'm so glad that you posted about your positive experience at Mayo Clinic. It sounds like you have a great deal of confidence in your medical team, which is so important! I see from a previous post that your surgery will be on December 7. Will you be able to have someone with you?

I look forward to hearing from you again.