Hello. I am new here. Just want to share...

I guess the good news is, I am getting through it. I am learning that I won't be able to work out at the gym for 2 hours everyday like I used to, and now that I found out I am gluten sensitive, I really have to watch what I eat and what ingredients I use. OH, yesterday I found the Spoons theory and immediately sent it to my mom and my husband. I finally feel like I might have a way of relating to people how I feel. I have had an overwhelming support from my family in regards to the Gluten free diet, but I don't think any of them (other than my mom and husband) really understand the fibro part. How have you all expressed this to the rest of your family? I hate when people treat me different or when we have to go out of our way for me. Has any one else struggled with their own strong will? When I tell people how I feel, I get the "oh, yea, I have that" response. They don't fully understand the breadth of pain or the depth of the fog we are in. And honestly, I hardly have the energy to explain.

Ok, so some more info...I pretty much feel like I've had fibro my whole life. At 12, I was diagnosed boarder line lupus. The doc didn't want to give me a full diagnosis in case I really didn't have it, but wanted me to take all the procautions of having it. That same summer we got an outdoor pool. I didnt swim during the day with the other kids because of the sun, but I did get to swim at night. I had a kidney doctor for many years after failing one of my jr high school physicals. I also saw a pediatric rheumy during this time. And Oh, not to mention that during this time we had to switch family drs and I ended up with a...not so good one. He pretty much said I was "too young" for all of the pain I was in and let it go. Turns out, at 20 I had surgery on both of my legs (medial tibial stress syndrome and compartment syndrome), at 22 I had a Lap-Nissen Fundoplacation done on my stomach for Acid Reflux Disease and at 23 I had exploratory surgery for endometriosis and cysts around my female parts. This past year has been a crazy roller coaster for me. I started it in the emergency room, had EVERY GI test imaginable before my gastro doc (who did a phenominal job with me before) referred me to a rheumy to get tested for other conditions. I made sure to send ALL of my records to the rheumy and have a journal of my symptoms from the moment I knew I would be seeing him. SO, on day 1, he spent 2 hours with me and gave me a positive diagnosis of fibromyalgia. He did blood testing to rule out other stuff...and it did...but now, I am learning a whole new life. I have never had to limit myself before. Or maybe I did, but now I limit more. It finally explains why I had all three surgeries...It explains the many months long stomach aches I would have as a kid...It explains why I have been on birth control since I was 16...it explains why I was on an anti depressant for SLEEP when i was a teenager...it explains the awkward diets i have had to be on...it explains the IBS out of no where...it explains why I get as sick as I do and how I have so many symptoms of other "diseases or syndromes."

How can I be in denial of something that explains SO much?

So anyway, I guess I was in the mood to write and share. I look forward to blogging with you all in the future. You guys really have helped me realize that it isnt JUST ME and I am not alone. :-D

I would really love to keep the positive attitude I have, but get down on it sometimes. How do you remain positive?

Thanks so much for listening.

Aimee

Aimee,

Wow, you've been thru alot! Sounds like you have some good support with dh, mom, & aunt. That is good and now you have us! It is really hard to explain Fibro to the others who just don't understand and so I stopped trying.

The 2nd thread from top "Fibro 101" is a good thread to read. Many good things in there including some great stretching exercises. Now that you are no longer in denial and know what is going on, you can move forward and start learning about all the great ways to live with Fibro.

I'm sure more of our veteran members will be with you shortly and have some great advice. They always word everything much better and think of things I don't. Guess that is why they are the veteran's!

It is very nice to meet you and hope to talk more.

Hugs!!!  Margie

Hello Aimee and welcome to the forum!!  Also would like to give my best wishes to your recent wedding. I cant really add anything except my welcome.  The fibro 101 post will help you so much.

Hugs

Diane

We've suffered a loss, right?  We've lost part of our health and also our expectations of what life would be like and maybe our plans for the future.  There is a grief process that we all have to do through to deal with these things.  I mean .... how can a person understand such drastic changes all at once?  Well, we can't.  There's no way. 

So people have to go through the "grief cycle" to deal with this stuff.  Shock, disbelief, anger, bargaining, and then several stages of acceptance. 

lol ... I know where I am right now.  I'm no stranger to the Loss Department, and it helps to understand the grief process ... but I don't think it speeds up the adjustment.  Time has to work its magic. 

Have you talked to a therapist?  They are so understanding and have so much insight.  My wife and I spent an hour yesterday with my psych ARNP and it helped SO much.

Wed. we talked to my Lyme doc (she's fantastic) and I think I'm getting it.  The 6 months of oral ABX are just to set up the IV ones.  I discussed the brain fog with her, explained my coping skills for working around those bad days at my job, and then asked, "Am I really "fit for duty" for this work (engineer)?"  She was very soft about it, but basically said, "That's inappropriate for the kind of work you've been doing.  If you go back to work it'll be in a different capacity." 

So that's a lot all at once.  We're probably headed for the IV treatments, I have several Herx cycles to go through, I'm likely not going back to work, and, if I do, it'll be something different than what I've done for the last 35 yrs.  Think I can deal with all that at once?  I don't think so.

I do know that I have a great health care team and loving wife to help me with all of this.  I have faith in them.  I also know that I'm not even healthy enough to worry about some of it right now.

Marriage is an ebb and flow.  It's a team.  There will be times when you will "be there" for you husband and help him in the unique way that only you can do.  It all works out.  It's OK that it doesn't seem "fair" every day.

I'm wondering if it's worth the energy to even worry about those who don't understand your condition.  I have a very limited energy budget, and I'm thinking fibromites also have a very limited pain budget.  My wife understands.  When we're out with other family members who don't see us much, I just tell them I'm out of energy, call a time out, and go sit down for a while.  After a rest, I can join in again for some more (or not).  It's something I have to do whether they understand it or not.  I don't need their approval to take the rest I know I need.

I think this forum is great.  The people here are so helpful.  And it really helps to talk about some of this with people who understand.