MRI results - pineal cyst

Hmmm, very interesting. Don't you hate when you unlock one door and find a hallway of even more doors (aka questions)? I did a quick search and headaches and insomnia were the biggest complaint. I personally would immediately try toget rid of if (I took off two benign cysts two years ago because they were 'icky' -- I have issues, lol!), but it looks like it might be difficult to convince a doc to do it because of its location. Make the appointment and report back.

Good luck Wack!

thanks - yes because its the brain though, tricky to get rid of...Im guessing I just wait a while and request another MRI in a few months time to see if its changed or grown etc

Its so hard to know if this is causing some of my neuro symptoms....Im trying so hard not to google it...I will wait a while and see if anything changes. It may have always been there and I didn't know

I don't get headaches, that is one of the symptoms I have never really suffered from - eye pain I do though and insomnia definitely!

Have asked on MS forum also, as figured they might have had more MRIs, something may have showed up and they might be able to advise..

In UK because of NHS its hard to get appoibtments with consultants quickly, unless we go private, then its hugely expensive

Hi Wackers,

First of all, I'm sorry that you haven't found a lot of information on your condition thus far, and that its taken this long to get this other diagnosis. I do believe though that this may be an opportunity to find possible better treatment plans and solutions for you. Hopefully you can find a doctor who can help you walk further through this.

Please keep in mind I'm no expert and I'm just trying to figure this out for myself. I do lots of research but have no qualifications except for being obsessed with reading treatment-experiences and reading medical studies so take my advice for what it is: amateur advice from someone unqualified. Each FM person is different and our paths to wellness may differ as well. I hope, though, that I might be able to give you some food for thought:

I think that as you continue to do more research on your specific condition, you should focus on the sleep-aspect and how your quality of sleep might be being affected as well. I think that studies have demonstrated the connection between sleep and FM. I'm going to go into some of this below:

I think that if a person has a condition that is inhibiting his body's release of the correct amount of hormones like melatonin and other hormones, that might be one major cause of his sleep impairment. When sleep impairment is caused, I have reason to believe that this might be a cause of FM-like symptoms and pain (This is my non expert theory, given my research). There was a study done on *healthy* individuals who had no known health issues. These individuals were put through a rigorous sleep-deprivation cycles for day and weeks in which they were woken up before they could get into the deepest stages of sleep. Guess what happened to these *healthy* individuals after not too much time? They started to experience symptoms similar to FM! Pain, brain fog, fatigue, and the list goes on etc. Basically, much of what us FMers complain of. (I wish I had access to the study, but unfortunately I can't remember where I read it). That being said, I believe that sleep disorders may be *one* contributing cause of *some* people's FM-like issues and diagnosis. Perhaps not all, and perhaps not even most, but some.

And what can inhibit sleep? An imbalance of correct or adequate hormones. And what can cause an imbalance in hormones? Probably lots of things.

Another example of how the FM syndrome may be inter-connected with adequate sleep structure:

In a study, FM patients went on the drug Xyrem, which is one of the *only* medications known to correct and restore stage 3 and 4 stage sleep in individuals with stage 3 and 4 sleep impairment; their FM pain reduced in some cases over 30%, and their brain fog lifted and energy levels restored to a significant degree. Their symptoms were simply not masked, but reduced! This, to me, is a big deal. It demonstrated that you can alleviate FM symptoms for a significant portion of FM-patients when you restore deep sleep! And it also proves that a substance exists which can do this for a portion of FM-patients. I think correcting impaired sleep may be key in some FM patients, although perhaps not all. (I'm one to believe that not all FM patients are dealing with the same causes of pain, but that's my unqualified theory, once again)

(Xyrem is a heavy duty drug that isn't easily accessible and also has significant side effects, so I don't bring it up as a possible solution, but mainly to demonstrate the connection between sleep-disorder and FM)


I think balancing hormones might be key in some cases of sleep impairment or fatigue and pain, specifically when an FM patient is dealing with 'unrefreshing' or impaired sleep.


Admittedly, I don't know much about your specific condition. I'm sorry if I'm speaking out of place. It seems that right now you are in the information-gathering stage. I only offer these thoughts as possible things to take into consideration as you continue to find the best plan for you, and to get your body into better balance. But, in summary - I believe you should continue to consider how your sleep might be affected, and whether or not the cyst may have any influence on that. Perhaps it may, perhaps it may not, but I think its worth some investigation as you move forward.

Once again, I'm no doctor, so always consider your doctor's advice.

Keep us updated!

Post Edited (CharmCityLady) : 11/8/2013 5:20:13 PM (GMT-7)

Hi Jasmine - I just replied to you on another post...im still up and down and trying to cut down at work - taking a long old time...Kept up with the vitamin regime and added whey protein smoothies to the mix, this seems to be working, as I gained some weight and feel a bit stronger.

How about you - still working hard at college?

Charm city Lady

Thanks so much for your detailed reply...I have always known that my symptoms came from sleep related problems...I suffer so much from insomnia, then debilitating fatigue...perhaps the cyst could be contributing to this...the only way to find out is perhaps to see an endicronologist? I might get a referral, as neuros dont have much information on melatonin....

I sometimes wonder if I get my sleep sorted, then my symptoms will subside, however I think I have now developped fibro due to my lack of sleep...Sleep study would help with this also, trying to get one over here is near impossible..there aren't many clinics around and the ones near me are in London Harley street, these cost thousands....There is one that does part nhs part private, this is a better option for me, but its not available till Jan (as they are hiring a new consultant) sometimes hidden sleep disorders can also present as CFS or Fibro symptoms...

Thanks for all the advice on this and I will keep everyone updated...I found someone on my UK forum, who has also been diagnosed with the same cyst, so I do have someone to chat with this about - yes thank goodness it is benign, im not sure I relish the though of brain surgery right now :o(

I hear ya, Wackers. I have also really wanted to get a sleep study, but haven't been able to afford one. Same with the endocrinologist. My insurance is very flaky an unreliable and so although I live in a city with access to great hospitals, I can't afford them. Its frustrating.

I hope that you find your way to some doc's, whether endo's or sleep specialists who will be able to give you some helpful insight.

Its hard to say. For me, its limited to speculation, but I really believe (some) people's FM may be very tied to hormones to some degree. And experts speculate there is a hormonal component, so I don't believe my speculation is completely unfounded. And ever since I've had FM and CFS, my menstrual cycle changed drastically, so I believe in my case at least, there is a connection between FM and hormones. I imagine the hormone and sleep hormone imbalance element is a big contributor to my issues and discomforts, and that if I could find some way to bring my body back into balance, (including my hormones) I might begin to feel better.

And so without knowing much about your condition, and admittedly being an unqualified advice-giver, I still think its worth it to see how the levels of your hormones may be, or see what your sleep structure is. And even if the cyst has nothing to do with some of your FM issues, I think focusing on sleep management is a good place to put the focus for many of us.

Good luck!

hey - that really does help reassure me, thanks. I can't believe how common they are and yet Ive never heard of them before...I guess we could have always had it there.

Maybe you should start a new thread about the pin prick sensations as this information might get lost on this post? I have had what you are saying, and I attribute mine just to fibro and my nerves doing weird things