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.

jodiforan | @jodiforan | Jul 25, 2020
In reply to @hopeful33250 "Hello @jodiforan, I'm so sorry that you had to wait so long before you got back..." + (show)
@hopeful33250

Hello @jodiforan,

I'm so sorry that you had to wait so long before you got back your strength. Who was it who advised you to seek physical therapy?

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Amazingly, I asked my PCP for the name of a Therapist who might give me a list of exercises. Neither my Mayo endocrinologist or my PCP had done so. I'm sure the next time they will though.

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cheryl1 | @cheryl1 | Jul 25, 2020
In reply to @hinklda "I am walking 2.5 miles almost every day which does exhaust me physically. I am also..." + (show)
@hinklda

I am walking 2.5 miles almost every day which does exhaust me physically. I am also seeing a physical therapist to help me strengthen myself. It was my doctor’s recommendation. I want to rebuild my muscles but I need to be realistic. It only been 4 months since my surgery and then 33 radiation treatments With chemo pills. I am still taking a stronger dose of chemo pills each month. Be patient with yourself!

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I am going to physical trainer 2 to 3 times a week. I could never walk 1 mile let alone 2. My BLA was 11 weeks ago after 2 pituatary surgeries failed. I ha e sever aches and burning in legs too

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cheryl1 | @cheryl1 | Jul 25, 2020
In reply to @astaingegerdm "@cheryl1 - If you had surgery 2 months ago your body is still in healing mode...." + (show)
@astaingegerdm

@cheryl1 - If you had surgery 2 months ago your body is still in healing mode. I admire your determination to regain your muscle mass. You will get there soon.
Recuperation is not easy- your body has been through the wringer, but now it will get better day by day.

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I hope I get better. I have had no life in over 6 months. By body has gone through so much. I hope to be able to have some fun again!

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jodiforan | @jodiforan | Jul 25, 2020

Know and trust that you can get better. The pace will be slower that you hope.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Jul 25, 2020

@cheryl1 - You definitely have the right attitude and motivation. You will get there!
My daughter was a competitive swimmer before she got sick. She realized how much muscle power she lost when she tried it again. Like you, she set out to regain her strength.

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2 replies
cheryl1 | @cheryl1 | Jul 25, 2020
In reply to @astaingegerdm "@cheryl1 - You definitely have the right attitude and motivation. You will get there! My daughter..." + (show)
@astaingegerdm

@cheryl1 - You definitely have the right attitude and motivation. You will get there!
My daughter was a competitive swimmer before she got sick. She realized how much muscle power she lost when she tried it again. Like you, she set out to regain her strength.

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Thanks it is so very hard and hurts bad when I try.

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1 reply
hinklda | @hinklda | Jul 25, 2020
In reply to @astaingegerdm "@cheryl1 - You definitely have the right attitude and motivation. You will get there! My daughter..." + (show)
@astaingegerdm

@cheryl1 - You definitely have the right attitude and motivation. You will get there!
My daughter was a competitive swimmer before she got sick. She realized how much muscle power she lost when she tried it again. Like you, she set out to regain her strength.

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Take it one day at a time...eventually we will all be blessed to regain and even gain more muscle strength!

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Jul 25, 2020
In reply to @cheryl1 "Thanks it is so very hard and hurts bad when I try." + (show)
@cheryl1

Thanks it is so very hard and hurts bad when I try.

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@cheryl1 - The pain is a problem- I remember that from my daughter’s recovery. She was lucky to find a good pain management doctor.
When you do physical activity, don’t push yourself too hard.
Have you checked out any Cushings support groups online/ Fb?

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cheryl1 | @cheryl1 | Jul 26, 2020

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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1 reply
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Jul 26, 2020

@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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