My first public admission that I'm ill

Just going to lay it all out there..

This is truly frightening for me, I know it doesn't make sense but there it is. I feel like if I admit it that it makes it true and I'll never be pain free again. I guess I should mention that I'm a bit stubborn and not that bright when it comes to this kind of stuff. Especially when I know that I have not had a pain free day in over 20 years. Denial indeed.

Ok, here's my story, I'll try to keep it to the readers digest condensed version.
In 89 while in the Marine Corps I was a healthy active woman who for no reason started to get tired, feel pain for no reason and gained weight, they diagnosed me with thyroid disease, put me through nuclear med, gave me some pills and said I'll be fine. I worked my butt off to keep my weight within Marine Corps standards and managed to pull through it while they kept adjusting meds every month. (20+years later they still can't get it right *eyeroll*) In 92 I reluctantly left the Marine Corps after 4 yrs with my Honorable, I truly wanted to stay in but knew I couldn't keep starving and exercising like that for much longer.
In 92 and 93, between the VA Dr's and my private Dr's, they kept telling me I had some disease called chronic fatigue and fibromyalgia but were unable to officially diagnose me due to AMA standards. Some written rule that said if you had thyroid disease you can't have CFS or FM (or be treated for it) because there were no tangible tests for the latter(s). *serious eyeroll*
So I gave up. By 97 I was so fatigued and in pain (that I constantly tried to hide or push through) I could no longer do my job and left. I had gone from a size 8 (USMC) to a 14 by then. Depressed!!!! By the beginning of 01 I was up to a size 18 I was in constant pain and was so tired I thought I had lost my mind.
This time I seriously gave up. I stopped taking all meds. (I'm so smart) I ended up having over and under active thyroid at the same time! OY! I was in constant pain, my tissues and organs were slowing and felt like they were crystalizing, kinda like crunchy glass,lol.
Back on my meds I went after they convinced that you can indeed slowly die from simple thyroid disease.(Myxedema coma was the term he used)
The whole time they gave me various pills for pain, none of which worked and I hated all of them and ultimately refused to take them. They told me the pain was because I was so fat. They said I was tired because I was so fat. Every problem I had they said was because I was fat. I hate doctor's.
By 07 I had reached to a size 22/24, I'm 5'6 and weighed in at 250, I was tired,in pain,and depressed. They kept telling me if I lost the weight I would feel fine but no matter what I tried I couldn't lose the weight! A to Z diets, my exercise was limited due to size and energy levels (I had no energy!) After telling me I had sleep apnea and would require a cpap machine it was the last straw.
So I had gastric bypass surgery. After a hormonal roller coaster first year post surgery I went down to my lowest point at 123lbs.(I'm about 135 now)
Guess what? They lied! Shocker, right? I was still tired and in pain. My movement was definitely better however
Fast forward to '12, my new Dr (due to insurance changes) looked me in the eye and said "You have FM and possibly CFS, I'm sending you to my friend a Rheumatologist." oh, guess what? All these years later, the AMA in their infinite wisdom had rewritten their rules and decided not only can you have thyroid disease and FM at the same time but that they are possibly related!? I hate doctors.
Anyways, it's been a crazy year, the Rheumatologist Is very nice promises to help. He put me on Cymbalta. I did not do well. I lasted 3 1/2 weeks. I could not sleep at all, my noise and light sensitivity skyrocketed, I was constantly nauseous, extremely jittery and I swear it amplified the pain. I threw them out. (did I mention I wasn't that bright with this stuff?) Yeah, when the meds say don't just stop taking them, heed the message. That was 2 weeks ago.
So here I sit feeling tired, in pain, and now with my brain covered in moss(feels like) hoping for better things yet to come.
Here's the real kicker, I'm embarrassed. My mind and body have been disconnected for so long, in my mind I am still that young heathy woman full of energy and fun, my body tells a different story however.
I exercise lightly because if I overdo it I pay for it. I physically shut down and have flare ups of severe pain. Food is another matter, I am completely addicted to food. All those years I ate through every feeling I had until it was just a habit to eat whenever and whatever. Even though it can/will make me sick I still occasionally overeat or eat the wrong things, of course I pay for it but I still can't seem to completely control it. Sucks, huh? Yep, more embarrassement. Close friends and family of course know and I don't shy away from talking about GB surgery when asked, it just gets old when I hear some one talk about it's "the easy way out". There is nothing easy about it. Now to tell them about FM, how does one explain such a thing?
So that's the condensed version, as you can see the emphasis of all my symptoms have always been related to body size and Thyroid, because that's what they kept telling me. While Fibro was mentioned briefly 20 years ago, they pushed it aside. I feel let down by the medical community and have a high degree of mistrust for them. I'm dealing with it,lol.

First off Welcome to your sanctuary. You’ve found such great people to help you through your troubles. I opened your post, read it, and about half way through though sheesh anyone of us could have wrote his. Our stories are so much the same but yet different. We have all been through the ringer as far as doctors go. Have gone head first into trying to find stuff that will help us because we are just that much in pain. And given up yet keep on going.

Keep your head up sweetie. Its the only way we can live this unnecessary painful existence.

Gentle hugs

Thanks for the welcome Punkin, and thanks for reading that mess! I swear I put paragraph breaks in there but apparently I need a proof reader and an editor!

Hi Leepen and welcome! I had a great post written for you but lost it somehow. This darned computer moves you to a different screen if you move your wrist the wrong way. So it did and I lost my reply to you.

I admire that you can infuse your fibro tale with humor. I chuckled along with your snide asides. Yup, I think we all have some doctor horror stories but it's truly alarming that you had to wait 20 years (!) to get a proper diagnosis! And that the AMA blocked you from getting proper treatment with it's worthless original statement that you couldn't have thyroid disease and fibro.

I would like to gently encourage you to return to your rheumatologist and tell him that Cymbalta was worse than useless and you've discontinued with it. I'm sure he'll understand and try you on something else. It really is trial and error with fibro meds, Leepen. I had to try a LOT of meds before I found anything that worked. And correct dosage can also make a big difference!

I can totally relate to your eating issues. I have the same problem but am much less open about it. And I'm not surprised that losing weight didn't change your fibro status. There are many slim people who have fibro as well. Really, that sounded like a lazy person's diagnosis. Too lazy to figure out what was really happening with you, even though they suspected fibro and it was RIGHT THERE in front of their faces. Bah!

At any rate, welcome! Congratulations on admitting your fibro issues. You've taken a big step today. I think you'll find a lot of good people and support here. We all can understand where you're coming from as we've been through the tides of fibro H#ll.



Wow Leepen, did you ever consider writting a book ? You have a fascinating way of capturing your reader. Wow, wow, wow, I can’t believe what you have been through… And yes thyroid disorder is related to fibro, I don’t personally have the connection, ( atleast thats what my dr says) but I know you will get some support her on that connection. I am checked for thyroid disease because I have every symptom ( a lot anyway )
I’m so sorry for your struggle with fibro, but the good news as you have said is they are recognizing it and trying to treat it. It takes a lot of persistence and patience to find the right medication combo, I love how you listened to your body and stopped the cymbalta, although your right you shouldn’t do that. You have to keep going back to the dr. Hopefully they won’t get mad at you for just stopping it, sometimes there ego gets in the way and they like to be in charge of what you take, and when you stop it. You have to tread carefully, if it’s a good dr. They will listen and keep trying different things.
I commend you for all your honesy, you will love this site, it has been such a blessing for me, new friends & people who really understand what you are going through, you are no longer alone…
There are for sure better things yet to come…
BTW … Thankyou for your service in the Marine Corp !!!
Hugs & blessing & thankyou for telling us your story !

i am not surprised military doctors did not find the CFS or they should have sent you right away to rhem...but in 80's there were not that many of them around.

One thing most people are not aware about military doctors is they do entire year less than private sector doctors! CFS is still questionable by many doctors and many people i know who supposedly had it now are completely healthy...they also got rid of stress in their lives. I do not get why you kept gaining weight....maybe you were depressed about being ill which i could understand..but you should be able to lose weight with fibro.

I am sorry that it took so long and that it has disrupted your life. You do not say if you continued to work once out of military I hope you did as it really does help one stay healthier if they feel productive and keeps your self esteem up. I also get that working full time might be too hard or maybe you went on to college which is great as well. Just do anything that makes you feel good.

As to any group of people there are good ones and bad ones. I have been lucky to have great ones..usually if you find one good one they can refer you to other great ones.....i also have had very bad ones.

I just read a great article about how to tell if it is time to get new doctor and also how to find them etc.

here is the link and good luck.welcome to nice support group!

Dear leepen,

Welcome to the group, I happen to think that you are 'that bright', and have a good handle on yourself. They just don't come any tougher or brighter than a Marine! (NO offense to any other branch!) It just goes to show you how quickly and completely illness can take down the very strongest of us!

There are many here who have had serious difficulties taking Cymbalta, so don't feel alone there. The trial and error with the meds is a book in itself! Please get back to that Rheumy, or another one, and try the next med, you just have to keep trying until you get the right one! Getting the right one can make a considerable difference in how you feel and how you cope!

As for food, there are some who have managed to adhere to strict diets and had great success, however as a majority, I think I can safely say we eat what we want, what else do we have left but food!

My Rheumatologist told me this when I asked him about an anti-inflammatory diet, "your diseases are genetic, unless you have a food allergy, it does not matter what you eat". I went through the AMA ringer before I found this Dr, and he was well worth the wait. Please don't give up until you find your superstar Rheumatologist, they can really help you when you get the right one!

You have come to the very best place I know, to learn, to vent, for someone to lean on, it's a place to make good friends who really do understand how you feel. Most of us have lost jobs, friends, family and so much more because of the illness. So you now have a place to come, to belong, to be understood!

We laugh and cry together, research, dig and hunt to learn all we can, and we are very glad to have you with us!

Big hugs,


Thank you for your service to our country, it means a great deal to me!

Thanks Petunia!

I have my next appt. with my Dr on the 28th and figured out I need more info so I can ask the right questions, which is what led me to this site. Now I'm trying to figure out the right questions,lol.

Thanks dee!

hopefully he won't let his ego get in the way, I've found that most, not all, of Dr's like the insurance payments more than their own righteous indignation when it comes down to it. ;)

Oh yes, I continued working but had to retrain to a new occupation that wasn't labor intensive, I skipped a few details as I was a bit long winded last night,lol.

The weight gain was due to thyroid issues, not the fibro. (and possibly fried foods and gravy) ;)

lol, I am learning that 'Happily Ever Afters' are only in romance books.

Can I ask what meds you were put on after Cymbalta? I'm a little anxious about what might be tried next...

Thanks SK!

With a few private exceptions(husband,Mother,BFF,lol) I have not told anyone about this, I'm not sure as to why, I guess I have stupidly associated pain intolerance/complaints with a character flaw/weakness. That sounds terrible. It IS a terrible thing to say, and I dislike that I have developed such a flaw in my own character.

Pain was supposed to be associated with something that was bloody and/or broken, even then walk it off, rub some dirt on it and you'll be fine. Pretty idiotic, right? Right.

I have much to learn about fibro and also myself, I really don't think I can improve the former with out improving the latter. No time like the present to get started.

leepen, It's that strong training to overcome that makes it even harder for you to accept, plus it's and invisible illness. The ole 'but you don't look sick' thing! It's hard on all of us to accept the limitations this places on our abilities, it has to be so much more difficult for someone who was trained to such a high degree of endurance. My husband is a combat Vet, so I have a fairly good understanding of this.

Thyroid, CFS and Fibro is a lot to deal with for the very strongest of us. Knowledge is power, as you get more information, acquire a better understanding, you eventually become more accepting, then you may even get to the point of telling others outside your small circle of 'trusted ones', but there is always a part of you that longs for the 'old you, the well you'!

We are here for you, we really do understand how you feel. You can click on any of our photos and read our profiles, it tells our story. You can also go to the top of the discussion page and use the search engine to access our files of discussions on just about any related topic.

We are glad you are joining us on our journey! Hope to see you here often!



hello Leepen, i hope that u fill find the info u need to be able to ask the right questions. there r probably 1000’s of discussions on here for u to read. u can search for certian things and that will lead u to discussions which will help. also feel free to start a discussion on something to get answers.
i hope that by the time u go back to the dr u will have the right questions and hopefully be able to get some meds that will help.
u may want to keep a pain diary from now till your appt(and after) so that your dr can see what struggles and pains u have day to day. this will help the dr to perscribe the right meds.
i hope u r feeling better from the cymbalta. i take it and it works ok for the pain but given the choice i would gladly try a new med. hang in there and u and your dr will find the right meds for u

Wow. Kinda think your name should be braveheart. I am also "Fluffy" and have been misdiagnosed and pushed off with pills for a real long time. You are a brave lady and I hope we can all be of some help.

Nice to meet you, Leepen. You've definitely been through a lot. The medical system doesn't seem to me to be set up to really handle people with genetic illness. They don't seem to recognize it soon enough but that's just my opinion. I'm 46 and just found out I have Ehlers Danlos Syndrome which is a genetic connective tissue disorder that causes the body to make bad collagen. I also have a genetic hypo thyroid condition. After being told most of my adult life that I was just fat and needed to eat less (I knew what I ate and didn't eat so that didn't make sense to me) a doctor finally checked more than my tsh level. Once a "whole panel" was done, I was prescribed levothyroxine which helped tremendously. I wish I'd had it a lot sooner. I was diagnosed with fibromyalgia last year but had other symptoms that weren't explained by that diagnosis. Finally I came across something by accident so thought to show my rheumatologist some things that I didn't know were "symptoms" (joint hypermobility, subluxation and dislocations) and she said "Oh! possible EDS!"

I told you all of this because I understand not being sure about telling everyone. I get afraid sometimes that people are going to laugh at me and call me a "whiner" for talking about my issues. I've decided I just don''t care what they think anymore. I post about my illnesses all over my facebook page. I tell everyone. If they don't like it, they don't have to read my page. I finally know what's wrong with me. I'm not making it up or looking for things to get attention. I'm also trying to raise awareness for EDS. People don't know much about it. Some doctors say it isn't necessary to get a diagnosis because there is no cure. However, things like aortic dilation and mitral valve prolapse can kill someone if they don't know to watch for it. If you feel comfortable telling people then it's ok but if you don't that's ok to. You're the only one who can make that decision for yourself. We're glad you're here! I'm getting brain fuzzled now so I've better quit. hugs and have a good Wednesday!

Susan W

Hi Susan, I thought I'd put a little info up about this. There is also a Ben's Friends group for this disease.

Looks like we need some members to get this group off the ground and running.

Good to hear from you! Wishing you well,

SK aka Susan, we have to stick together!

Thank you, SK! Thanks for putting up the links. We definitely need more members on the EDS group. It's hard because either there aren't as many of us or it's under diagnosed. I think it's a little of both.

Thanks and hugs

Susan W aka waterswaves

Here's another Ben's Friend's EDS group. This one has 6 members and is for any type of EDS. I'm not sure which I have yet but I suspect its HEDS.

What a ride you have been on and what an arse various medical institutions can be. All I can say to you is at least now you have been diagnosed a new spectrum of treatments has been opened up for you. What is important is to focus on the future and that it CAN be a positive one (especially if you come on here regularly because we are all ok really). By acknowledging the problems you have in a public place you have enabled people from different places with more experience of what you are going through (or at least some of it) than your doctors have and we can do more to help you in terms of support and suggestions of things you may be able to try.

Doctors seem to love the line "lose weight and the pain will lessen" because it buys them a few months minimum before they have to think about treating you for the actual problem which often they know either nothing, or very little about. What is important to remember is that they cannot know everything about everything and often Primary Care Practitioners know a little about a lot of things because they are really only there to forward you to the appropriate expert for your condition. With this in mind try not to judge your doctors too harshly and understand that they are only able to do so much to help.

Take care and remember we are all here for you any time of the day or night that you may need us. Try to keep on fighting it... I know it is hard but you will get to a stage where you are at least accepting of the way things are. Mikex