New to Fibro - What to Expect?

My name is Karen and I am 48 yrs old.  I have had endo since I was a kid and dx'd at 26.  At that time I had one child and wanted to someday marry and have more and the jerk doc I had told me to deal with the pain or get a hysterectomy.  I dealt with the pain.  I was dx'd with fibro about 6 months or so ago,it seems like years now.  So with the fibro I was no stranger to chronic pain years before the fibro.  I would have a "cleanout" every 9-12 months and for 10 yrs this went on while trying to concieve with my ex.  Finally in 1996 I had the hysterectomy with promises that take out the source of blood and the pain would stop,not so.  I have had about 5 cleanout surgeries since then and am due for another.  It is everywhere in my pelvic region including in my bowel and I need a bowel re-section on the next surgery.  Problem is I am having trouble finding a great surgeon to do the surgery.  I went to the University of Washington and saw the top OBGYN out there and he said nope won't have you onmy table because your too big of a risk for crashing.  The last surgery I had was in 2005 and I ended up in the ICU on a vent for 5 days as the doc spent 5 hours cleaning me out in a hip to hip cut on a tilt able and when they took out my breathing tube my airway collapsed so instead of waking up thinking I was going home from a day surgery I was on lift support and now noone wants to take that chance cept I have to have this done or it will spread to my lungs.  Found out that even after the hysto that little minut bits of the disease can remain and each month they swell and burst and so on and even if they completely wipe out your estrogen that this disease makes its own estrogen and in fact feeds itself.

The fibro makes my endo pain alot worse,heck all my chronic pain is enhanced from the fibro(broke my back in 2000 so back pain too and had a stroke about a year ago and stroke pain in my shoulder). Some days are worse then others and of course there are the flares mostly when I overdo and I am well known for that.  It's like you have a day where ya feel pretty good and try to catch up an everything cause you dont know how long it will last.  I know it sounds funny but for the most part I am used to the pain.  I am on narcotics and that helps but there is always constant pain from one thing or another.  The thing is you have to take it one day at a time and you really appreciate the simple things in life more,things you took for granted before.  You can still have a good life its all about deciding whether you are going to let this take everything from you or enjoy the things you still can do.  I know there are suppliments that help some ppl and for others like me I had to be on stronger so having a good understanding doctor is a must.

Stress is a huge factor with fibro and endo.  Learning to relax and take "me" time is a must.   You could be in a long flare right now(not sure what happened on my color but the font can go wierd here lol) My heating pad is one of my best buds and I bought a super long one that I can wrap around huge areas and they are cheap.  I really hope you start feeling better soon,beleive me I have vented on here tons of times and it helps to just say what you are feeling.  There have been many times I felt like I couldnt take one more minute of this pain but you do and it does get better.  I went on Lyrica around the time that I was dx'd and it has been my saving grace.  It takes care of any burning pain and much of the joint pain.  It can take a bit to get used to it but most do so if you try it hang in there.  And dont worry about the weight gain thing that is so talked about with this drug.  It can make you have the munchies but keep low cal low fat snacks on hand and it isnt a problem and even that seems to go away after awhile.  I have pain coming at me from all directions and I do enjoy my life still.  I cherish every time I can see and play with my grandkids,family is important so try and spend time with them.  You can e-mail me anytime if you want.  I have been through the wringer and do understand.  Take care Honey.

Soft Hug's,

Karen

Don't give up hope. This isn't a death sentence and we never know when they will come up with meds to control it better.

Positive attitude helps and I work on that daily. It's a work in progress Some days I have to search really hard for it.

I figure the one thing we do have control over is the way we think, so might as well think positive thoughts.

This is a great forum and I'm glad you found it.

luv and hugs

Marlee