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?

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Dec 17, 2022
In reply to @lidiana "Can a regular MRI see the difference of a tumor and cysts? I was told I..." + (show)
@lidiana

Can a regular MRI see the difference of a tumor and cysts? I was told I have a cyst on my pineal gland that wasn’t there before and I’m so sick in bed bound and just got out of the ER. Please any help would be greatly appreciated 🙏🏻🤍 blessings of healing ❤️‍🩹

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@lidiana - I’m sorry that you are so sick! Can you tell me what brought you to the ER?
Did you have the MRI there?
A skilled radiologist should be able to tell the difference between a tumor and a cyst. Do you have a follow up appointment after your ER visit? Neurologist?
As far as I have learned from reading about pineal cysts they are not that uncommon, but they have to be followed. Obviously, if they get large they can cause problems too.
A Neurology follow up is very important so that you will know if the cyst is causing your current problems and also what are you supposed to do.

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1 reply
lidiana | @lidiana | Dec 11, 2022

Can a regular MRI see the difference of a tumor and cysts? I was told I have a cyst on my pineal gland that wasn’t there before and I’m so sick in bed bound and just got out of the ER. Please any help would be greatly appreciated 🙏🏻🤍 blessings of healing ❤️‍🩹

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1 reply
georgiamartin | @georgiamartin | Dec 11, 2022
In reply to @khauert "I was diagnosed with a prolactinoma pituitary tumor. However, in all honesty, I think the doctors..." + (show)
@khauert

I was diagnosed with a prolactinoma pituitary tumor. However, in all honesty, I think the doctors question what kind of tumor it really is. For prolactinoma, my prolactin level should be in the hundreds and thousands. My blood work showed it was at 57- high enough its a problem, but not high enough to be prolactinoma. The following was diagnosis from a variety of docs I saw: 1st primary physician- carpel tunnel, 2nd primary physician- I am over weight. Rheumatologist- 1st visit-I have gout. 2nd visit- fibromyalgia. 3rd visit depression. When I saw my endochronologist, he said it was my weight; the tumor had nothing to do with the pain. When I saw the neurologist he didn't even want to hear about my symptoms. His goal is to get the tumor out. With obvious frustration, I called Mayo and thankfully, I see an endochronolgist and a neurosurgeon soon. In the mean time, I have been researching pituitary tumors and joint/muscle pain, and I fall short every time. Then it dawned on me to research hypothyroidism (which I was diagnosed with when the tumor was found November '19). I have all the symptoms of hypothyroidism, one being sever muscle/joint/bone pain, swollen hands/fingers and feet, and carpel tunnel like symptoms, to name a few. All those symptoms are a result of nerve damage from hypothyroidism going untreated. I noticed something "off" with my body almost 2 years ago. I just assumed it was because I am aging, not as active, overweight. Turns out the tumor and hypothyroidism has slowing been creeping up on me. And interestingly enough, I stumbled across an article (that I didn't save and can't find on the internet) that quoted a doctor. He said the patients need to listen to what our bodies are telling us and not always go by what our blood work shows. I guess blood work doesn't always show there is a thyroid issues because our hormone levels change throughout the day. He advised to talk to the doctor about all the symptoms regardless of the blood work results. I know this was lengthy, but I hope it helps. My next research is going to be nerve damage and how/if/when it will heal and I hope I will be pain free once my hypothyroidism gets back to normal.

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been going through same things for 2 years!!! Pain getting worse daily....whole med team now!!! I am seeing my neurosurgeon on 5ec 21 and will say, " I want this tumor out NOW!! " the pain is debilitating! changed GP's because she ever said for 2 years was , "I don't understand what you are driving"
Anyway, can't afford the $50K to go to Mayo so will continue to push and advocate for myself in Alberta!! The Canadian Med system is not all it is cracked up to be!! I am on the journey and Will win!!

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Dec 4, 2022
In reply to @georgiamartin "I phoned my Neuro surgeon 10 days ago and said, "I cannot wait until July for..." + (show)
@georgiamartin

I phoned my Neuro surgeon 10 days ago and said, "I cannot wait until July for another MRI, I am in continual agony, feel like all my joints are disintegrating, I need help now!!!
So, I have a new appointment for Dec 21. In the meantime I am doing EFT " tap" method for calming the nerves, praying through healing scriptures in the Bible, knowing the Lord Jesus wants me healed and enjoying the life he has given me!!
All blood tests from New GP came back normal!!🤷‍♀️
feel blessed, have my very own medical team👍 and I'm pushing myself to stand up and be as active as possible for my mental state of mind.
I am still active in my Interior Design business and it helps my mental state of mind to get up and move and create!!!
blessed Christmas, stay hopeful and advocate for yourself everyone!!

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@georgiamartin -
That’s great that you called and got a much earlier appointment for your MRI!
You are resilient- keep up with your different ways to stay strong and positive!

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georgiamartin | @georgiamartin | Dec 4, 2022

Same as my experience, still on the journey with getting the right solution, have to advocate for yourself!!!keep pushing!! Cheering you on

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georgiamartin | @georgiamartin | Dec 4, 2022
In reply to @astaingegerdm "@georgiamartin - It must be difficult to live with that pain for so long and no..." + (show)
@astaingegerdm

@georgiamartin - It must be difficult to live with that pain for so long and no answers.
Did your Endocrinologist test for all the pituitary hormones?
It seems like a long time to wait so many months for another MRI. What does the Endocrinologist say about that?

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I phoned my Neuro surgeon 10 days ago and said, "I cannot wait until July for another MRI, I am in continual agony, feel like all my joints are disintegrating, I need help now!!!
So, I have a new appointment for Dec 21. In the meantime I am doing EFT " tap" method for calming the nerves, praying through healing scriptures in the Bible, knowing the Lord Jesus wants me healed and enjoying the life he has given me!!
All blood tests from New GP came back normal!!🤷‍♀️
feel blessed, have my very own medical team👍 and I'm pushing myself to stand up and be as active as possible for my mental state of mind.
I am still active in my Interior Design business and it helps my mental state of mind to get up and move and create!!!
blessed Christmas, stay hopeful and advocate for yourself everyone!!

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1 reply
sturns | @sturns | Dec 3, 2022
In reply to @astaingegerdm "@sturns - I’m sorry to hear about your wife’s struggle with her treatments, but the results..." + (show)
@astaingegerdm

@sturns - I’m sorry to hear about your wife’s struggle with her treatments, but the results of the clinical trial she is in are incredible!
The two of you are fighters and you apparently have access to the best cancer care.
I agree that it seems that it is more than a coincidence to have the pituitary problems and NET.
My daughter also had Mary Lee Vance- superb.
Her surgeon said that he tried to get everything but there was a possibility that some cells remained near the carotid artery. He also said that if she needed more surgery it could be done with Gamma knife.
It has been 11+ years and so far all looks good.
She had extreme body pain after surgery but was lucky to find a good pain management doctor where we live. It took time to get rid of it.

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Yes, Dr. Vance is awesome, very focused, professional but she does have a caring side as much as she tries to keep it low. Dr. Laws is at Brigand young woman's hospital now or retired but I don't think people like them retire. My artery had tumor still wrapped around it but that was 22 years ago and no issues with it. I never had pain until I had net. and extreme it is. I had so many issues with pain management, so many treat you like a criminal but this, meds, were made for this... So I went to palliative care and they are like gold and i'm going through the VA. They truly are wanting to help me with the pain. It gets to the point where it will take me to my knees. Nothing, no pain , to a ten just like that. Not fun. Good luck for both of you. Thanks for responding, being alone with no outlet to people like us is very lonely. It's as I am the only one and well, i'm not, so thank you for all your reply's. They were/are appreciated.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Dec 3, 2022
In reply to @sturns "I get tested a lot for my hormone levels and they say the Pituitary issue has..." + (show)
@sturns

I get tested a lot for my hormone levels and they say the Pituitary issue has nothing to do with the NET I have. I disagree, but what do I know. I do know the pain can go off the scale and mentally it feels like my hormones are off but last time I had Blood work everything was good..?? I am being seen by 2 dr.s, one is the Moffitt center and my treatments are from Florida cancer specialist's because the drive to Moffitt is 4 hours one way, but they are the main one because they are one of the top 5 for this type of cancer. My wife had stg. 4 metastatic melanoma and they just wanted to put her on a clinical trial to give her another year or two. The 7 large tumors are gone and that was 7 years ago but the side effects are real bad, but she's here.

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@sturns - I’m sorry to hear about your wife’s struggle with her treatments, but the results of the clinical trial she is in are incredible!
The two of you are fighters and you apparently have access to the best cancer care.
I agree that it seems that it is more than a coincidence to have the pituitary problems and NET.
My daughter also had Mary Lee Vance- superb.
Her surgeon said that he tried to get everything but there was a possibility that some cells remained near the carotid artery. He also said that if she needed more surgery it could be done with Gamma knife.
It has been 11+ years and so far all looks good.
She had extreme body pain after surgery but was lucky to find a good pain management doctor where we live. It took time to get rid of it.

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1 reply
sturns | @sturns | Dec 3, 2022
In reply to @astaingegerdm "@sturns Are the numerous tumors in your liver and lymph glands related to the pituitary tumor?..." + (show)
@astaingegerdm

@sturns
Are the numerous tumors in your liver and lymph glands related to the pituitary tumor? What’s the plan for them?
You have been through a lot.

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I get tested a lot for my hormone levels and they say the Pituitary issue has nothing to do with the NET I have. I disagree, but what do I know. I do know the pain can go off the scale and mentally it feels like my hormones are off but last time I had Blood work everything was good..?? I am being seen by 2 dr.s, one is the Moffitt center and my treatments are from Florida cancer specialist's because the drive to Moffitt is 4 hours one way, but they are the main one because they are one of the top 5 for this type of cancer. My wife had stg. 4 metastatic melanoma and they just wanted to put her on a clinical trial to give her another year or two. The 7 large tumors are gone and that was 7 years ago but the side effects are real bad, but she's here.

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sturns | @sturns | Dec 3, 2022

Yes they are the best , my Dr. was Dr. edward laws and endo was Mary lee Vance, both great and if I had to have a hospital experience it would be there. I also met the man who invented the gamma knife. He looked just like Einstein and came in, sat down like I was his only patient for the day and explained why the GK couldn't be used, because the tumor was to big. But he took the time and he didn't have to. That's what it's about, making the patient calm and informed so they aren't so nervous. Glad she had a good experience to.

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