Pituitary tumor symptoms: joint, muscle and body aches

In November 27 2004 I woke up after midnight with a severe headache
I knew after about an hour that it was not your normal severe headache it hurt so bad I had to go to The E R
Within a couple hours of being in E R I started seeing double vision instead of 1 TV I saw 2 then my eye lid completely shut n I lost control of it
They ran several tests n found the Pituitary tumor in my forehead that put pressure on my eye and the found Cancer in my Colon luckily my tumor in my head had nothing to do do wit Pituitary Tumor doctors monitored it for a year and wasn't groing anymore so they left it alone 20 yrs later I'm starting to have that same headache everyday bones are hurting developed Heart Problems just all sorts of problems an I in danger of something possibly developing n going wrong with me body aches n all the symptoms developing
I'm getting worried because I didn't know bones and joints would ache from it and heart problems signed rdele1567 I'm concerned what can I do

In November 27 2004 I woke up after midnight with a severe headache
I knew after about an hour that it was not your normal severe headache it hurt so bad I had to go to The E R
Within a couple hours of being in E R I started seeing double vision instead of 1 TV I saw 2 then my eye lid completely shut n I lost control of it
They ran several tests n found the Pituitary tumor in my forehead that put pressure on my eye and the found Cancer in my Colon luckily my tumor in my head had nothing to do do wit Pituitary Tumor doctors monitored it for a year and wasn't groing anymore so they left it alone 20 yrs later I'm starting to have that same headache everyday bones are hurting developed Heart Problems just all sorts of problems an I in danger of something possibly developing n going wrong with me body aches n all the symptoms developing
I'm getting worried because I didn't know bones and joints would ache from it and heart problems signed rdele1567 I'm concerned what can I do

Welcome to Connect, @khauert. I moved both your messages to this discussion and added it to the Brain Tumor group as well the NETs group. I did this so that members could get the full picture and to bring fellow members together, like @ladydove417 @dmedina71 @astaingegerdm @sandysdoves @gemttaz and others who may have experience to share with you about pituitary tumor and joint and muscle pain and body aches.

You can also read about others with pituitary tumors in this discussion
- Looking for others with Pituitary Adenoma https://connect.mayoclinic.org/discussion/i-like-to-now-if-their-is-anyone-who-has-been-diagnosed/

Are you getting treatment at this point to help manage the ache and pain? How do you manage it? Might it be related to medication you're taking?

Hello @gustavo1975 and welcome to Mayo Connect. I see from your post that you have experience with ACTH.

I look forward to hearing from you again and knowing more about your health experience. If you are comfortable sharing more, what symptoms have you had? How long ago were you diagnosed? Are you being treated for this now?

Hola cómo estás? Espero que andes bien y hayas podido encontrar la solución. No soy medico ni puedo darte respuestas médicas. Puedo contarte lo que pasamos con mi esposa y esa enfermedad.

Los síntomas que nombras si pueden ser de cushing. Cara redonda ? Cara de Luna llena ? Estrias violetas en abdomen ? Perdida de potasio ? Debajo de la nuca , tienes una especie de joroba? Fracturas de huesos ? Glucemia alta? Presión arterial alta? Bastante incontrolable ?

Lo primero que tienes que hacer es ir al endocrinólogo y contarle tus dolencias. En todo caso, sugerir que crees que tienes cushing. Ellos deberán solicitar exámen de ACTH , cortisol .

Cómo dije en otro comentario, nunca te quedes con dudas. Tu eres la que conoce mejor tu cuerpo. No dejes que te manden al psicólogo. Muchos medicos al no conocer esa enfermedad no detectan nada y te diagnostican depresión. Obviamente al tener el cortisol por las nubes tu estado de animo es muy cambiante. Pero todo esto que te comento son mis experiencias. Ojalá hayas podido solucionar tu problema

Hello!I have been ill for over a year and I am trying to figure out what I have.The specialists have not been much help.I just saw that you mentioned your daughter having a weak pelvis from Cushings.I met with a neurologist who thinks I might have a metabolic muscular disease.I had blood tests done that showed low deha sulfate.When I looked that up I saw Addison's Disease can cause that.I thought I might have Cushings though.I keep on gaining weight and have no control over it and the muscle is completely gone in my arms,legs,pelvis,etc.I haveva big belly,arms and legs though.I saw that Cushings is usually skinny arms and legs.
Have you seen any cases where the deha sulfate in Cushings would be low instead of high?

I am going to pain management doctor and a physical trainer to rebuild muscle. Cushings disease has taken away all of my muscle. I find it difficult to even walk due to all the damage this disease has created.

@khauertkhauert did you ever get answers to what was causing the pain? I have had pain for years and no answers

@cheryl1 - You are right, Cushing’s does a lot of damage to your body. Good thing though, your muscles will return. I remember my daughter actually needed pelvic floor physical therapy- all muscles are affected.
Bone density is also diminished- my daughter’s kidneys showed very tiny calcium deposits- causing blood in urine. This went back to normal fairly soon too. The body will repair itself -
Wishing you a speedy recovery without much pain.