1. < Neuroendocrine Tumors (NETs)

Pituitary tumor symptoms: joint, muscle and body aches

Posted by khauert @khauert, Jan 12, 2020

Hi. I am new to this. And not sure I'm in the right category. I was diagnosed with a pituitary tumor in November. However, I have been experiencing terrible joint, muscle and body aches for a year now. No doctor knows why and nobody can confirm its from the tumor. I'm frustrated and becoming very hopeless and depressed. Can anyone with a pituitary tumor relate to body pain?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

jenirog70 | @jenirog70 | Nov 22, 2023
In reply to @hopeful33250 "Hello @jenirog70, I'm so glad that you posted about your positive experience at Mayo Clinic. It..." + (show)
@hopeful33250

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.

Jump to this post

Good morning, my son and his fiancé will be staying with me in Rochester for the duration. It entails the procedure on one day and a sinus debravement 5-7 days after. And sooo many appointments! I’m forever grateful they can come with me. I’m so excited. I’ve had a migraine for 5 months constantly from the tumor.

REPLY
mattey741 | @mattey741 | Jan 16, 2024

I had surgery on 14.12.23 to remove tumor on pituitary gland. I was allowed home in 4 days but due to drop in sodium levels was readmitted and then home again on 24.12.23. Since then I have had constant ache at the back of my nose and in front of my head. I take pain killers every day. Can anyone tell me is this normal and if so when will these symptoms improve. I feel worse now than before I had the surgery which is a shame. Thank you in anticipation of responses. Matt.

REPLY
j77 | @j77 | Mar 26, 2024
In reply to @astaingegerdm "@cheryl1 - You are right, Cushing’s does a lot of damage to your body. Good thing..." + (show)
@astaingegerdm

@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.

Jump to this post

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?

REPLY
1 reply
j77 | @j77 | Mar 26, 2024
In reply to @astaingegerdm "@cheryl1 - You are right, Cushing’s does a lot of damage to your body. Good thing..." + (show)
@astaingegerdm

@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.

Jump to this post

Thankyou so much for responding.I am going to the endricinologist this week so hopefully I will get more answers.They are not finding much.They did find a Borderline antibody for Myasthenia Gravis too.I dont know if it is possible to have MG and Cushings at the same time.

REPLY
chiggins81 | @chiggins81 | Jul 10, 2024

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

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 18, 2024
In reply to @chiggins81 "@khauertkhauert did you ever get answers to what was causing the pain? I have had pain..." + (show)
@chiggins81

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

Jump to this post

I'm tagging @khauert to make sure they see your question about finding the cause of their pain.

@chiggins81, have you also been diagnosed with a pituitary tumor?

REPLY
gustavo1975 | @gustavo1975 | 1 day ago
In reply to @cheryl1 "I am going to pain management doctor and a physical trainer to rebuild muscle. Cushings disease..." + (show)
@cheryl1

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.

Jump to this post

Hola

REPLY
gustavo1975 | @gustavo1975 | 1 day ago
In reply to @j77 "Hello!I have been ill for over a year and I am trying to figure out what..." + (show)
@j77

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?

Jump to this post

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

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 21 hours ago
In reply to @gustavo1975 "Hola cómo estás? Espero que andes bien y hayas podido encontrar la solución. No soy medico..." + (show)
@gustavo1975

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

Jump to this post

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?

REPLY
1 reply
gustavo1975 | @gustavo1975 | 13 hours ago
In reply to @hopeful33250 "Hello @gustavo1975 and welcome to Mayo Connect. I see from your post that you have experience..." + (show)
@hopeful33250

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?

Jump to this post

Hola Teresa . El TNE lo tuvo mi esposa. Se lo diagnosticaron en. Septiembre del 2023. En Marzo del 2024 fue intervenida quirúrgicamente, enucleacion tumoral. Por ahora todos los controles salieron bien. No recibió tratamiento de nada, ni quimio ni radiación . T1 N0 M0. ahora en marzo tiene un nuevo control con el oncólogo y con la endocrinóloga. Hasta el día de hoy libre de enfermedad por suerte.

Los síntomas por lo cual fue detectado. Principalmente fueron los rasgos físicos que genera la enfermedad, también presentaba debilidad muscular , presión arterial alta y azúcar en sangre alta, perdida de potasio. Pero fue bastante dificil encontrar el tumor primario todos examenes de imágenes daban negativo hasta que llegó el PET TC con ga68. Ahí mostró la lesión en cabeza de páncreas sin comprender arterias, asique se pudo extirpar el tumor por completo. La vida le cambio para mejor , solo le quedan a veces dolores de huesos pero los puede llevar sin medicamentos.

Escribí es español, espero la traducción para ustedes sea entendible, soy de Buenos Aires Argentina. Saludos para todos, espero todos estén bien.

REPLY
View MoreView Less
Please sign in or register to post a reply.