Fibro + Ovarian cyst + potential Pheochromocytoma

[Tjrs]

I am hoping someone might have experience with either of these two other medical issues *in conjunction* with Fibromyalgia.

Diagnosed with Fibro years ago, by 2 Rheumatologists and 3 GPs (Yes, I believe in second opinions... lol.)

I'm dealing with an ovarian cyst - Does anyone have experience with ovarian cyst surgery while having fibro?

Are ovarian cysts common among the fibro community?

I'm also being tested for what is most likely going to be diagnosed as pheochromocytoma, is anyone else dealing with Pheo together WITH fibro?

Any comments are appreciated, thanks.  :)

**Please note that I do know there is an ovarian cysts forum, and have browsed it, but my question is NOT about ovarian cysts, it is about recovering from cyst surgery when you have Fibromyalgia.**  (I am worried that the Cyst forum will tell me to ask my questions at the Fibro forum, and vice-versa.)

[gemcupcakes]

I have had many cysts removed over the last 10 years and I believe it all started around the same time that the fibromyalgia symptoms started.  No pain memory but trying to find a good gynecologist over has been impossible as the fibromyalgia is much worse when I have a cyst particularly emotionally,  good luck

[inga511]

Yes, I had a huge ovarian cyst removed three years ago (it was as big as a grapefruit.) it went undiagnosed for six weeks because I am a bipolar patient as well as fybromyalgia patient and the Doctors would not help me because they thought I was drug seeking. I was at first diagnosed with irritable bowel syndrome(which I have never had.) Anyway three gynecologist later, i had the thing removed (it was in torsion-which means my Fallopian tube was twisting on itself and the pain came in waves.) my recovery time was 5-6 weeks but I felt a lot better to have that thing out of me. My Fybromyalgia, by the way does better with yoga.

[kashamarie]

Hi
I am also being tested for pheo right now, I have had fibro for 3 yrs, I googled fibro / pheo, to see what would come up, if you are on facebook please friend request me, my name is kasha marie ferguson, as I would really like to talk to you more Tjrs! my testing came because of high high blood pressure, and elevated high norepenephrine, and epenephrine levels, so the next step is to redo the 24 hr urine test as that one was collected in june, and if levels are still high than I guess the next step is cat scan, I also was diagnosed with anxiety disorder, as I was experiencing severe high blood pressure, as high as 170 / 106, and I am very active, and healthy 33 yr old woman, with the high blood pressure, I was experiencing severe weakness, abdominal pain, severe headaches, that they chalked up to fibro related migraines, so I guess we will se when the next 24 hr urine collection comes back. Please friend me on facebook though, as I would love to talk more

thankyou kasha

[Tjrs]

I'm so happy to hear that recovery wasn't as bad for you as I had feared it could be.

Why did the IV cause problems for you?  Do you think it was inserted wrong, or is it common for it to be painful for a long time?

[Tjrs]

Hi,

Still no results, I called the dr's office and they said they hadn't heard back from CT yet.  I haven't done any other tests yet for this, so I guess I have those to look forward to (ha ha).

I like the idea of a table tilt test for POTS.  I will ask for one, but I'm guessing I'll have to wait a few months until I can get it.  Thanks for the tip on Dysautonomia, I checked it out and it definitely does seem very similar to what I'm experiencing.

I'm so THANKFUL to have found so many friendly, helpful people on this forum who seem more experienced with my symptoms than any doctor has ever been.  

Thank you for your helpful recommendations, they are worth a lot to me.

[Tjrs]

Hi Totie,

Thanks for the details, but I'm rather new at this... what is a necrotic tumor?  Does that still mean it was Pheo or was it something different?

Also, what are adhesions from the surgery?  

When they did both surgeries at once, what was the incision like?  Sounds like I could be heading down the same road you did, unfortunately.

I'm really glad everything turned out OK for you though, and that all was benign.  It gives me hope for myself.

[usgsa2002]

I had laproscopic cyst removal surgery with fibro and don't recall the recovery being too difficult. It was more uncomfortable than painful and I was laying down much of the first couple days, but within a week I was able to move about freely on my own. The worst part was the IV in my hand... ugh... awful. I felt that for months afterwards, but what I've read online makes me believe that happens regardless of whether you have fibro or not. Good luck!

[evo123]

Hopefully you will recieve your results of the CT scan soon, but in the case of a pheo they do not always show up, further investigations have to be made.  Have you had any 24hr urine collections to test for this or a Plasma Free Metanephrines blood test as a scan alone can not give a dx.

Regarding POTS many doctors are unaware of it existing and do not like to admit they know nothing about it...suppose you have the same with Fibro.  But there is a test which can confirm or rule out a dx.  This is a tilt table test and I recommend you ask for one.  A dx is made on the fact that when a patient goes from a laying position to standing they have an increased heart rate of 30bpm or a heart rate that goes over 120bpm.  You can do a similar thing at home, try resting laying flat for a while and take your pulse.  Stand and take it again every few minutes for about 20 mins.....see what happens.  POTS patients can have fluctuations in bp on standing so be careful and if you faint (I do not) then make sure you have someone with you.  Try having a look in the Dysautonomia (autonomic dysfunction) forum on here and see if anything sounds familiar.  

There are many conditions that have similar symptoms too.  What symptoms do you experience?

I hope you recieve a dx soon and can find relief from your those symptoms.

[Totie]

The ct scan I had of the abdominal area also noted "possible pheo",  mine turned out to be a necrotic tumor at the (L5, SI) location. Right underneath the aorta. They could not do a biopsy due to location so a laparotomy was done to remove it since they could not tell what it was at the time. At the same time they removed my left ovary along with a complex cyst that had grown from 2.0cm to 4.5cm withing two months and was very painful. I had the gyno start the surgery, and the vascular surgeon finish. All was bening....:)

That was in Feb, took 6 weeks off, and the only thing I am currently dealing with is the adhesions from the surgery....:((

[Tjrs]

Thanks for your honest answer,

I heard somewhere that people who have Fibro, their bodies have "pain memory".  I was scared that surgery of any kind (laproscopic or otherwise) could be something I'd be feeling for years.

It's comforting to know though that someone else has gone through it.  Thanks.  :)

[Tjrs]

Thanks for the reply.

I'm guessing the radiologist saw a growth during an ultrasound for the ovarian cyst, because they are the one who recommended I have a CT.  Had the CT at 5:30pm on Friday, have yet to hear any results (it's Tuesday morning).

I hadn't heard of the possibility of Pheo (thought the CT was for the ovarian cyst).  Nurse who prepped me for the CT asked which cancer meds I was taking.  I told her she had the wrong chart.  She read the correct name, date of birth, etc, and told me it said I had Pheo.  (It must have said they were *checking* me for Pheo, I'm assuming.)

I had never heard the word before.  I googled it, and found that I did indeed have many of the symptoms (tachycardia, pallor, abdominal pain, odd episodes of anxiety/confusion, etc.).   The only symptoms I didn't have were high blood pressure and excessive sweating.

I've just checked out the syndrome you were diagnosed with, and I agree it could very well be that too.  I'm just stumped right now, and rather tired of being told "we don't know".

I brought up Orthostatic Intolerance to my GP after seeing it on TV (which I think is somewhat related to your syndrome - according to wikipedia lol ).  She unfortunately just glanced at the printout I'd brought and told me that OI was a diagnosis made when nothing else could be found, and she seemed to not consider it a proper diagnosis.

I was rather ticked off, but as someone with Fibro, I kind of brushed it off.  Unfortunately I am getting used to having to deal with doctors' "professional opinions".

I am rather frustrated though, that my heart rate can fly up to 200 beats per minute and no one can tell me why...

[Totie]

Sorry, no one can really answer that even if they do have fibro.

The reason being is that everyone is different when it comes to pain, there will be a lot of variables when it comes to your recovery time and how you tolerate pain.

My level of pain can be a 7 as to where that same level can be a 2 for someone else.

It all comes down to your tolerance of pain level.

Sorry, could not be of more help. I had a laparotomy to remove a tumor, ovary and cyst. It took me about 6 weeks to recover to be able to come back to work, as to where I knew someone who took about 12 weeks to recover.

[evo123]

What Pheo symptoms do you have?  Have they found a growth or have you had elevated urine/blood levels?

I ask this as I have a adrenal tumour and they suspected it to be a Pheo as I have all the symptoms, but have now a diagnosis of Postural Orthostatic Tachycardia Syndrome.