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) group.

I went to pain doctor last week. I received 12mg fentynal patch. It doesn't help. The burning and pain in legs is horrible

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@cheryl1 – I’m sorry the fentanyl patch didn’t work. Is it common to have such severe burning and pain in the legs? Any input from the pain meds doctor?
Could it be injury to some sensory spinal nerves? You don’t have weakness in your legs, do you?

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My endo at mayo called 2 nights ago. Dr Meeks. He has such a calming manner. I have had very loose bowel movements since my surgery May 7th. He doesn't think related to the removal of adrenal glands. Suggested I see gastro intestinal Dr. I see a local Dr tomorrow. He also said to stop the metformin since my glucose testing 125 and below in mornings. The burning in legs still bad. I guess I am going to take slow and one step at a time. Thanks so much for your concern. I thank Dr Chaichana at Mayo for doing my 2 pituatary surgeries. It is amazing what he can do. I do have much weakness in legs. This is common with Cushings disease. You lose all muscle and I mean all! I am turning 63 the 29th and the bod looks like 83.

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Hello @cheryl1,

As it has been a while since you last posted, I was wondering how you are feeling now. Do you feel that you have recovered from the pituitary surgeries?
I'd like to know how you are doing post-surgery and with Cushing's Disease. Will you post when you are able?

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@astaingegerdm

@khauert May I ask what kind of pituitary tumor you were diagnosed with? My daughter was diagnosed with a pituitary adenoma causing Cushing’s disease- excessive cortisol. However, about 10 years before this diagnosis she was diagnosed with fibromyalgia- I mean chronic, severe pain.

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I'm currently experiencing a lot of Cushing's Disease symptoms! And I have not yet been diagnosed, but it is a strong mutation that runs in the family.

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@jenniferk07

I'm currently experiencing a lot of Cushing's Disease symptoms! And I have not yet been diagnosed, but it is a strong mutation that runs in the family.

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@jenniferk07 hello and welcome to Mayo Clinic Connect. Since this is a strong mutation that runs in your family, have you scheduled an appointment to seek care?

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@jenniferk07 – I join Amanda in welcoming you!
The mutation in your family, is that the one that causes Cushing’s?
May I ask how old you are?

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@amandajro

@jenniferk07 hello and welcome to Mayo Clinic Connect. Since this is a strong mutation that runs in your family, have you scheduled an appointment to seek care?

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Yes I have! My first appointment with Mayo was yesterday. Now I'm waiting to hear back to start a plan and my arrangements for going to MN.

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@astaingegerdm

@jenniferk07 – I join Amanda in welcoming you!
The mutation in your family, is that the one that causes Cushing’s?
May I ask how old you are?

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I am 22, almost 23. I'm not for sure about if it causes Cushing's, but one of my uncles that had to get his removed was experiencing swollen hands, feet, face, because it was secreting too much of a hormone. My mother has one that has stayed consistent in size as well as her other brother.

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@cheryl1

I went to pain doctor last week. I received 12mg fentynal patch. It doesn't help. The burning and pain in legs is horrible

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I have also related to pain in my legs. Sometimes at night when I'm getting ready for bed and laying down I have to constantly move my legs for relief. (Restless leg syndrome)

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@jenniferk07 – Hi! I'm just checking to see if you heard back from your first Mayo visit?

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I'm sorry for your pain but encouraged to see your post because I have also had pain for years (undiagnosised) that I've been told isn't tumor related. Thankfully Dr. Gruber has now referred me to neuromuscular! I'm very interested in following your post. The only diagnosis they've come up with is possibly myasthenia gravis but that causes fatigue and weakness, not pain.

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