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06/19/2009 01:36 PM

Pituitary tumor and fibromyalgia......

NONONUNU
Posts: 1
New Member

anybody else have both??? I was just told tues I had fibromyalgia and my pit tumor was found in 2003.. so I was just wondering if these two things maybe went hand in hand or I just get to be the lucky one that has both lol Tongue
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07/31/2009 02:11 AM
Angelogr
AngelogrPosts: 7
New Member

Hi this is Angelo from Athens Greece.

I suffered a lot of headach two months ago even when I was sleaping at night and a lot of pain in one of my eye. I went to an eye doctor to have an exam. I thogh that all the symptoms had to do with time spent at work in front af a PC.

He found that there was nothing wronk with my eyes and he sugested to go and have an MRI.

I had an MRI done and was diagnosed with a pituitary adenoma, if I am correct 3 mm

The endocrinologist gave me a medication and all the headach and pain disappear and I am back to what ever doing before like going to gym.

I am scheduled for an operation on 19 of August.

Did you had an operation ?

How often you go for blood tests ?

What about MRIs

Take care

Angelo


07/31/2010 11:13 PM
gulfcrest
gulfcrest  
Posts: 116
Member

Hi, I've been a member of the fibro group for a couple of years now and just saw the post of you having both fibro and pit. tumor. I've had fibro for almost 4 yrs now and now I have a pit. tumor, so what ever came of your situation? treatment? link to fibro? The pituitary gland and the hypothalamus are so close to one another, I can surely see where it may not be coincidental, but my docs don't seem to think so. Did u or do u have pressure behind your nose and between your eyes? I am so anxious to get this treated and see if the fibro goes away. Wow, that would be the miracle I've been praying for. Thanx for any input!

05/31/2011 09:28 AM
nikieis
Posts: 8
Member

I have both...I found out about my fibro about 6 years ago and the pit tumor was found about 2 years ago...Mine is treatable with meds so they told me no need for surg unless I just want to rid myself of it..it was a 5mm tumor.

05/31/2011 10:48 PM
PJK
Posts: 2
New Member

there is no medical correlation between the two. fibromylasia, if true, many dr's do not believe in this, it is really a catch all phrase when they dont know what to label your pain as. most fibrom pt's are ither depressed and many people have pain due to depression. or have the pain, which in time leads to depression and can potentiate the existing pain. Pain can come from a pituitary adenoma due to the restriction of the bodys other hormones. more so cortisol. without this, your joints become very inflammed and obviously very painful. aside from head aches of course. So to stay away from the whole fibro debate.. no they are not related, but as u can see, pain can be developed by either through seperate means.

06/01/2011 05:15 AM
Angelogr
AngelogrPosts: 7
New Member

Hi my friends, this is Angelo from Athens Greece.

I saw that there is a discussion about pit tumor, so I want to let you know haw I am now after almost 2 years I had the surgery for my pituitary adenomma removal.

ALL THE HEADICK WHICH I HAD BEFFORE THE OPERATION HAS DISAPEAR !!!!

Yes it is true, I have not eny headick, even from lishening to loud muzik.

Every 6 months (now every year) I had bload tests and an MRI,and the resolts are exelent.

So please read my story bellow,as I had writen it over a year or so.

"I had a lot of pain in my right aye so I went to a doctor which we know well, to examin me, he couldn't find anything wrong with my ayes, so he told me to go and have an MRI.

So the results showed that I had a pituitary adenoma, you cant imagine haw my family felt about it, they were really very scared they same also was I.

First of all I didnt knew nothing about it, I mean what I have to do or what is the therapy, I thote that they will open my head to remove it. I was so scared even to look at the internet about it, just a few days before the operation I look at the internet.

Any way, let me tell you about the surgery.

I went to the hospital 2 days before the operation, just to get ready,they did a few injections to me and prepare my hands, so to be ready for the operation.(to give me medication throu the vains)

The operation lasted about 4 hours,because I also had a broken nose from an axident which I had many years ago, so the doctor spent some time fixin it also.

The neurosurgeon went thru my upper lip to reach the adenoma, he was specialized to this kind of method. I had not any pain after the operation whene I wake up, just a very slide headache, which they told me it will go away in a few days, but my upper lips where a mess and I could not feel them and all the area around them and most of my front teeth was nump, imagine still the area exactly under my nose and the front two upper teeth is nump,but as the days go by I have more sense of them.

After the operation I stayed in the hospital 4 more days and then went home, also I took 30 days off from work, but to tell you the truth after the first 1-2 weeks you can return to your work but you dont supose to bent your head down or do any havy lifting. Before living the hospital the endocrinologist told me to continew taking the T3 and the hydrocortizole. At 7 in the morning the T3 at 9 in the morning 1/4 hydrocorizole, then at 2 o'clock 1/4 hydrocortizole and at 7 in the afternoon 1/4 more.

(with the above medication which the endocrinologist gave me when I first visited him one month before the operation, all the headache which I had dizapeare, my hormone levels were under the limits that they saposed to be and with the medication they came back). I remember he had told me that I will be taking them for all my life.

Now the good news. Two weeks ago I had my fist blood test after the operation, guess what, all the hormone levels were back and few of them were close to their upper limits and one or two of them a litlle higher from the upper limit.

The endocrinologist could not believe it, he told me to stop taking the T3 and the hydrocortizol.

(just to know, one of the side effects which I had from the hydrocortizol was that I was very thirsty all the time and the worst was that I had to go to the bathroom to pee every 45 min or sooner, when I started going to work I was taking my car, in case I had to stop to pee, insteed taking the company bus)

Now after stoping taking the hydrocortizole the side effects started to go away but not complicly, I guess I need one more week.

Now I am scheduled for my first MRI at the end of November and also for a new blood test in the middle of December.

I am back to my every day activities like going to the gym and I feel terific and full of energy.

By the way since the operation all the headache which I had, disapear, I cant explain it, I dont have any kind of headache not even after many hours of work or lisening to loude music, some times I am joking to my father and mother teling them that the doctor removed a part of my brain and I dont feel nothing.

So my friends I wish to all of you good luck and dont be afraid of nothing.

I am glad I found this site it helped me a lot."

So as you see everithing went fine, so dont be afreid if you are sceduled for an operation.

Your friend from Athens Greece.

Angelo


06/27/2011 09:21 AM
CircleW2
Posts: 37
New Member

I havea macroadenoma on my pituitary gland and I am awaiting surgery myself at the University of Virginia in the US. I personally dont have the fibromyalgia, but my mother had it and I work in a hospital and see it firsthand on a regular basis. I am not a Dr. but I truly believe that it is the body screaming things arent right. Usually I agree about the cortisol being high, but I dont think that its the only cause. I think it can be from poor conversion of thyroid hormones, lack of thyroid hormones, low/normal vitamin D levels, lack of magnesium, etc etc etc. I think its when physicians are afraid to keep running all this labwork and possibly scaring people with it that they just give it the fibro label and leave it at that. Sometimes I think they just have a vary hard time finding peoples root problems due to lack of patient subjective information and borderline labwork that gets overlooked. Like I said im not a dr. but there is cause for pain and there is probably a strong link between your fibro and your pituitary tumor. I hope this helps!

12/08/2011 10:44 AM
mya3772
Posts: 1
New Member

It's interesting that others have the linking diagnosis as well. I always wondered if Fibromyalgia was a secondary diagnosis to the Pituitary Adenoma. It's surprising that I'm not alone in this. I was diagnosed with the Pituitary adenoma about 2-3 years ago.. just this past year I was diagnosed with the fibro. I think that doctors may have thrown up their hands and think that it's all "in my head" (no pun intended). So, my personal opinion is that there's got to be a link between the two. I'd love to see a trial of some fibro patients and being tested on their hormone levels. I'd bet they'd find something other than looking at us (patients) in disbelief that we actually feel this miserable.

08/11/2012 01:03 PM
salsa
 
Posts: 4
New Member

Hi, it's been awhile since anyone has posted on this topic. However, I'm new here and just wanted to let you know that I've just recently been diagnosed with a pituitary adenoma but I've had fibromyalgia for years and years (say, about 15 years!) also chronic fatigue syndrome. I believe for all this time the pain in my muscles and the fatigue and cognitive problems have been as a consequence of my pituitary gland not functioning properly, which was never thoroughly tested. So I probably have had this tumour in my pituitary gland all along! Just guessing. But it seems to make sense.

11/01/2012 09:37 AM
creek533
Posts: 1
New Member

i was diagnosed with FM in 2001. in 2006 after having vision trouble a pit macroadenoma was found and the majority of it removed. (because it's wrapped around my left carotid they weren't comfortable removing all of it.) it was non-secreting and there were no affects on the hormone levels.

i felt better for 4 years... 2 years ago the FM seemed to resurge and i was put on medication for it. 2 months ago the medication was increased - it still doesn't seem to be helping.

surprise! this year's MRI showed my tumor has grown to almost the size it was when it was first located. i'm scheduled for surgery again 11/29. i'll be interested to see if the "FM" symptoms subside after surgery this time as they seemed to last time. up until a couple days ago when an insurance adjuster friend mentioned she's seen cases come through where people have both FM and the tumor i never thought about a correlation.

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