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10/04/2009 06:26 PM

Hello, Just joining.

cswjcksn
Posts: 6
Member

I have been treated for fibro for many years now with Cymbalta, Lyrica, and occasionally narcotic pain meds, although I try to avoid these like the plague. I also have severe arthritis in my knees, ankles and back, so sometimes I feel like I am never going to feel good again. I am single, work as a nurse, which is very hard work. Some weeks I work a couple of days (12 hrs) then have to rest for two or three, mostly sleeping, not doing much around the house. I exercise by doing water aerobics as much as I can. I just get so frustrated at never feeling good. My doctor is very sweet, gives my anything I want except predisone-he worries I'll get type II diabetes, but sometimes I feel he doesn't believe all the fibro issues Does anyone identify with this?
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10/04/2009 06:48 PM
mammy
mammy  
Posts: 7217
VIP Member

Welcome to our family, it's a pleasure to meet you. I bet all of us can relate to all or at least part of your story. I have the same health issues so that part I understand. I'm no longer able to work so although it's financially harder, I do collect disability but at least working is one less stress I have to deal with. I honestly don't know how you and lots of other members can work, just thinking about it makes me sore. I have a very good relationship with all my doctors which I think is key in living your life the best you can. I have 3 doctors that I see on a regular basis and they all work very well together to try and keep me going. We are all still working on a good med combo which I think can be one of the most difficult parts.

Having support is important too, you have found yourself in the right place for that. Weekends are usually a little slow but you will find that everyone here is just so wonderful. This site has truly been a blessing in my life and I have made some wonderful friends along the way. I hope you will stick around and become part of our wonderful family. I look forward to getting to know you. Please let me know if there is anything I can do to help.


10/04/2009 06:57 PM
cswjcksn
Posts: 6
Member

Thanks for your encouragement. I hope to be around often.

10/04/2009 06:57 PM
britseybes
britseybes  
Posts: 54
Member

welcome to the site! i'm sorry to hear that you have fibro and that you are having trouble w/ doctors. so far, my doctors have been pretty good, but my first doctor was a mess! not because he didn't relate to fibro, but because he didn't even test me for anything when i started seeing him for my issues. when i got worse and was in bed for more than 8 weeks, i switched docs. anyway, i can relate to the pain and feeling like you'll never feel good again :/ i have a 4-year old boy and i'm a full time student... i'm majoring in nursing!

i hope you enjoy the site and make some great friends and find great support like i have! welcome!!!!

brit


10/04/2009 08:18 PM
raynedae
raynedae  
Posts: 8219
VIP Member

Hello and welcome! I'm glad you found us.

Some of our members are having really good luck with a drug called Suboxone. It's meant for drug addicts but off-label in small doses it's actually got a bunch of the members pain-free. They still have issues with fibro-fog but over all their lives have improved dramatically. There are a couple of threads on it, try using the search box at the top of the screen to read more about it.

Again, welcome!


10/04/2009 08:25 PM
aTinaL
aTinaLPosts: 11832
VIP Member
I'm an Advocate

cswjcksn, welcome to the wonderful world of mighty fibromites! I'm very pleased to meet you.

Rayn is right about the suboxone. I've been on it for four months and have been pain free since the first dose. If your doctor will give you anything, please talk to him about trying this! It works for fibro pain at very, very low doses. I'm on the lowest dose twice a day. I've been able to get off all my other meds.

I'm not sure if it will work for your arthritis pain, I still have to sometimes take other meds for that and the other back problems I have. However, I do think it helps some. Besides, just being rid of the fibro pain gives you a whole new lease on life, even if you do have pain from other conditions.

I hope you'll hang around and make yourself at home so we can get to know each other!

Newbie hugs!


10/06/2009 12:31 AM
jenigood1
jenigood1  
Posts: 3311
Senior Member

If you can take Tylenol and it helps any, look for the kind (may be generic) that lasts for eight hours - the one I found at Target is called "arthritis pain relief" - I take it for occasional "non-fibro" pain and it helps me stay asleep all night. For fibro pain I swear by Cymbalta but I've heard good things about Suboxone. Worth a try - Jeni


10/06/2009 07:04 AM
cswjcksn
Posts: 6
Member

Hi,Jeni, thanks for your suggestions. I have found that 1350 mg of acetaminophen has helped me sleep at night. You have to be careful not to take more than 4000 mg daily, though, so you don't injure your liver. Right now I am in a full-blown exacerbation of my fibro due to starting a program using guifenisen. (This is an expected result, you get worse before you get better as the causative agent is worked out of your body)I discovered this by reading a book by Dr. R. StAmand,who has studied fibromyalgia for 50 years in his practice. I met a gal at my gym who was actually in his care and she has had good success. My goal is to get completely off the Lyrica and not to get on any narcotics, if I can help it. As I said, I'm a nurse and I have seen people who have had to have more and more narcotics because they have built up a resistence to them. Then they are branded. unfortunately, as "drug seekers," sent to pain clinics and put on more and stronger narcotics. Not good!

10/06/2009 08:39 AM
hatbox121
hatbox121  
Posts: 11022
Group Leader


10/06/2009 09:56 AM
Stella77
Stella77  
Posts: 700
Member

Welcome!

I am also a patient of Dr. St. Amand's and have been on the Guai protocol for over 2 years. I have gone from being bedridden to working part-time, a huge improvement. Are you on the Guai support group Claudia runs online?

I also have been taking the Suboxone for a little over a week now and I'm pain free, as long as I don't overdo it!!

Feel free to PM me anytime.

Stella

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