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skybluestar64
on 7/28/11 6:29 am - TX
Topic: RE: Day 7 of Savella
Are you stressed? Getting enough sleep??
skybluestar64
on 7/28/11 6:24 am - TX
Topic: RE: Can anyone give me advice....

You sorta figure it out as you go along, and nothings ever absolute... you never really get to a pain free place, more like a somewhat controlled state.  My advice, Sleep alot like 12 hrs.. I know it seems like alot but with FMS you need the extra time to get your body to recoup.    Sleep is so key to controll.. stress... try to keep it under controll because that causes flares... Ho****er, like hot hot showers are known to help with flares.   Right now Im taking a combo of  tramadol and
Seroquel and Welbutrine, Because everyone with FMS has issue, depression and anxiety caused by the pain.   Find your self a good pain doc, one who doesn't look confused when you tell him you have FMS.   And move, the more you sit still the more the pain will creep into your bones.. Pay attention to how you sleep, some times the postion your sleeping in can cause upper back pain between the shoulder blades in FMS people.    Be carefull with Cymbalta, It suddenly stops working, and when you come off it you go through a week long withdraw syndrome... not pleasant... Most FMS docs willl recomend tramadol, it's the kinda drug you need to give a chance because you body needs to get used to it, when you first start taking it's really sedating.  The seroquel is awesome because it really puts you to sleep and makes you get a dedicated 12 hrs.  The welbutrine is preety good because it has the added weight loss and then it helps ward off the depression.  Have you tried the lidocane infustion?? I would love to try it but im illergic to lidocane... I heard you have to get the treatment frequently but it totally kills the pain... worth a shot right?? 

 

patcatpaws
on 7/28/11 2:16 am - Akron, OH
Topic: RE: New to forum
I have been telling my doctor about this awful fatigue for over 6 months.  I could fall asleep sitting at my desk.  My legs feel like I have weights tied to them most days.  I sleep good, I get up refreshed, 2 hours later I'm ready for a nap.  I'm just soo fatigued.  Nothing helps.  I don't have the trigger points like fibromyalgia. 

I can relate to all your suffering.  I just don't think every doctor understands (or cares).  I don't think mine does.  She changes the subject back to my blood pressure, my depression.  I just want to get rid of this fatigue.  I did have low vitamin-D level, but it doesn't seem to every come up to normal.  I think I'll try to find a speciliast.  Maybe a chiropractor could help.
EOD WIFE
on 7/25/11 11:12 am - Lawton Ft Sill, OK
Topic: RE: Can anyone give me advice....
On July 24, 2011 at 6:49 PM Pacific Time, buff1948 wrote:
My has fibro for 15 years. She been on topamax ,lyrica ,petisome and 3 day patches. It has put her to bed most of the time. She does not go shopping or church anymore. She is on a walker or wheel chair. When she has a bad attack some time we have to go to emergency room. She goes through spells of sleeping all the time. She get in so much pain she crys. I can not move in bed because it hurts her so i sleep in the lazy boy. She had one knee replaced and did great. the 2nd knee has been nite mare from hell. In P.T. she blew the inside liagment out and had to have 2nd surgery. The doctor said that liagment was like sewing two woren out mops together. The pertisome caused this. She a staff infection and had to go back an have 3 surgery. They had to take hardware out the knee and cement upper leg and lower leg togther untill al infection is gone. The wound doctor removed 2 stitches out to clean the wound out and left it packed for a week. A HOLE open up big enough to drop a golf ball in could see the cement. Took back to the surgern . He blew his top. He said if he had not been able to close the hole they would have to ampee the leg. Now he is hoping no infection set back in . iF so more surgery and antiboloic. After the infection goes away they have to put the hardware back in. she has be in the hospital since 6/1/11. They are saying now 3 to 4 more mobths
HOLY OUCH BATMAN!
I hope things get better soon!

     I  MY RNY 5-5-09    Life is Good
       myxferadd.jpg picture by mikeysbrightstarboobies.gif picture by mikeysbrightstar

EOD WIFE
on 7/25/11 11:10 am - Lawton Ft Sill, OK
Topic: RE: Can anyone give me advice....
Thank you! that is great advice I appreciate your time

     I  MY RNY 5-5-09    Life is Good
       myxferadd.jpg picture by mikeysbrightstarboobies.gif picture by mikeysbrightstar

(deactivated member)
on 7/25/11 5:19 am - NC
Topic: RE: Question regarding WLS and fibro, chronic pain
I had RNY 1 March 2011 and before I went in I was in the middle of a horrible flare. I also have back problems that at that time pain specialists said was Sciatica - worst pain in my life and it lasted until for months. I had a steroid injection end of May and have been ok since. Fibro is still there but not in major flare right now. Started on Neurontin a few weeks ago, seems to help. I have lost 88lbs so far and I can't see where the weight loss had changed the pain or flares but I do have more energy and am able to enjoy time with my dogs and husband more.
(deactivated member)
on 7/25/11 5:07 am - NC
Topic: RE: R U tired of people blaming your weight for your pain?!!!!
My new pain specialist just said this to me a few weeks ago. That I needed to lose weight. I reminded her that I just had gastric bypass and I have lost over 80lbs. It kind of shut her up but she mentioned I needed to exercise more. Which is really hard when you barely have the energy to get out of bed or shower. I wouldn't wish this kind of life on anyone but some days I wish I could let them in for just a little while. I doubt any of the naysayers and ignorant people could handle our lives for more than a few minutes. All of the pain and uncertainty. It is a nightmare.

Before I was diagnosed I had all kinds of witty retorts and comebacks but the fibro fog has done something to me. After years of swimming in it I only think of things I SHOULD have said later in the day (some times week).

Wish I could be of more help - just know you aren't alone.
Ashlin05
on 7/25/11 3:12 am - TX
Topic: RE: Question regarding WLS and fibro, chronic pain
Oh my goodness Deb I had to go to the bottom of the page to see if I wrote your comment. We are in the same boat & yes, it sucks being in so much pain!! I am scheduled for my first knee surgery on Aug 30th and I am not looking forward to it. They have such a horrible time controlling my pain. So many pain med's do nothing for me, which makes it really painful. With the Fibromyalgia, both knee's pain and with 1 disk in my back that is totally detearing. I had back surgery on one side & have never had anymore pain there. The disk is the problam. I had the lap-band surgery last year in August and I am not doing as good as I want too.
With the Lyrica & pain meds it is really hard to lose any weigh. I guess I will have to just stop eating to get myself back in contol.
I just wanted to wish you the very best. I am turning 61 yrs old this year and I don't look or feel 60, but here I am. My weigh started off at 273 & I am not 230, but should be down a lot more.
Just wanted to let you know that you are not alone "At ALL"
buff1948
on 7/25/11 12:12 am - north augusta, SC
buff1948
on 7/24/11 11:49 am - north augusta, SC
Topic: RE: Can anyone give me advice....
My has fibro for 15 years. She been on topamax ,lyrica ,petisome and 3 day patches. It has put her to bed most of the time. She does not go shopping or church anymore. She is on a walker or wheel chair. When she has a bad attack some time we have to go to emergency room. She goes through spells of sleeping all the time. She get in so much pain she crys. I can not move in bed because it hurts her so i sleep in the lazy boy. She had one knee replaced and did great. the 2nd knee has been nite mare from hell. In P.T. she blew the inside liagment out and had to have 2nd surgery. The doctor said that liagment was like sewing two woren out mops together. The pertisome caused this. She a staff infection and had to go back an have 3 surgery. They had to take hardware out the knee and cement upper leg and lower leg togther untill al infection is gone. The wound doctor removed 2 stitches out to clean the wound out and left it packed for a week. A HOLE open up big enough to drop a golf ball in could see the cement. Took back to the surgern . He blew his top. He said if he had not been able to close the hole they would have to ampee the leg. Now he is hoping no infection set back in . iF so more surgery and antiboloic. After the infection goes away they have to put the hardware back in. she has be in the hospital since 6/1/11. They are saying now 3 to 4 more mobths
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