kat13

Its so nice to have people who understand. I was close to tears tonight when my hubby came home from bowling and told me everyone was pushing us to go to this wedding coming up at the end of the month..its 6hrs away and would be two nights in a motel. Of course my hubby told everyone to talk to me...I can't even go to the grocery store without being exhausted for days. I've had to stop all meds because I developed ulcers from the anti-inflammatory ones and other side effects from lyrica etc. so good days are very few. I hate having to tell people that I just can't do it...they don't get it. Does anyone else have this problem?

chuckbere15

You should asked your doctor about. Neurontin. It's cheaper and less side effects. And it helps me just as good as lyric did.

galvestonangel

I have it too. But I guess I am lucky, mine does not seem as bad as some of you describe. I was diagnosed in about 1991 but I now know I had it years before that. Now a lot of things are blamed on old age but I know some of them are from the fibro. I had IBS until I started taking Effexor, one of the side effects was constipation and it balanced out.

The thing that lead to my getting diagnosed was a pain in my upper left arm that went on for two years and thru two drs. It felt as if someone had frogged (remember as a kid, someone would hit your arm with a fist with the knuckle on the middle finger stuck out. I went thru every test in the book and one day the Dr started pressing on my arm and other places and it hurt.

A fe years ago, a Dr. told me that there were some studies that linked it to lack of sleep and stress. I believe my first symptoms started after I had children.

Paisleyc

Hi
I was diagnosed at least 15 years ago. I can't NSAID because it has an aspirin base. I have a sensoneural hearing loss (nerve deteriation) so with more aspirin--less hearing!! I take Paxil for chronic pain ( I think that is getting old) may need Cymbalta. Took Lyrica for years and resently, I had extreme swelling of feet over 2 days and that is one of the rare side effects, so we stopped that. Oh brother was that a week. Lasix put me in severe pain and could only take 3 days and thats all. I have been on Ultram and that helps some. Takes the edge off. The Dr. just put me back on Neurontin and it is helping take the edge off. So I am getting there. After I was laid off from work in 2007, I had two knee surgeries in 2008. That was bad. I applied for Disability and got it in 2010 after a fight. It give me medicare and that helped.
They took darvocet off the market and now I don't have a pain med. Need to get one.
Doc wants me to exercise and lose weight. Can't get that far. My muscles cramp and I hurt so much I am sore for days. I don't sleep well at night either.
But you all know this. This is a very depressing disease and very few people understand how we feel and hurt. I've read all the post and got a few ideas to talk to the Dr. about. Thanks.
Sorry this is so long. But it is one of the few places someone understands.

Thanks, Love and Prayers!!

Carol from NC

watterstide

I started trying to loose weight..5'7" 210 punds, i joined fitess USA..it feels so good to exercise in the water..i am exhausted when i get home, but it is a good tired. i got into the hot tub when i was finished..and decided i was doing it backwards..i needed to get into the hot tub, prior to the water aerobics..it has sort of warmed my muscles and tendons up, so i can be loose for the aerobics.
it really has helped me.

i know i am blessed to be retired,and have enough money to afford a membership..($79 for the year,$20 a month) not everyone has that. my kids are grown,so i don't have to deal with that either..it is just me and the hubby,and the furbabies.
i look forward to the day i can walk the dogs..that is what my next goal is..start slow,work up to longer walks.
Many blessings to all, and {{hugs}}

kaykwilts

Well, I guess I will add my story here too.

My diagnosis of Fibromyalgia and CFS came in Feb 2008, after an autoimmune issue nearly took my life....a rogue antibody was destroying my platelets. Six months of massive steroids damaged my adrenals into oblivion, and ruined my immune system. I did not have the misfortune of getting the wrong doctors from the beginning....In Fort Worth, Dr. Larry Sharp is one of the top five specialists in the country on Fibromyalgia and Chronic Fatigue. There was even a TV special about him in 2006 or 07. Anyway, he blends western and eastern medicine to achieve the best results for his patients. Each treatment plan, and its ongoing changes, is tailored to each patient.....no "one cure fits all". In Jan of 2010, he approached me and asked if I would consider becoming a part of a control group that was to try a new treatment drug. I said yes. I have been on Low Dose Naltrexone (at the 4.5 mg dose) since March of 2010. I am better. I do not have as many down days. My pain is more manageable. I am not well, but am at a point where most days, with a constant eye on my activity level, I am able to manage. I also take magnesium supplements, thyroid, flax seed oil, and a phyto-estrin, to stabilize my "change of life". With taking Naltrexone, one cannot take narcotics of any kind. So on my bad days, I take two Ibuprofen and two extra-strength Tylenol together. That seems to help manage the pain better. In addition, Dr Sharp prescribed a hot tub for me for Hydro-therapy..and that has been a God-send.

Naltrexone, in higher dosages, is used to assist people who are detoxing from alcohol and drug abuse. The research has shown that, in lower dosages, it affects the immune system into thinking that it is not having issues. A side benefit of this drug is that the chances of me getting any sort of cancer is next to nil, as it prevents the normal cells from going that direction.

Another benefit.....Dr. Sharp suffers from Fibro himself...and so does his wife. So he understands in a way no other Doctor can. I love this man, and truly believe that God led me to him. I am as functional today as I am because of this man....and like so many of you, I too am on disability. My old life is gone, but with Dr. Larry's help, I manage to maintain hope each day that that day will be a good one.

Just my experience. Maybe it will help some of ya'll!!

kaykwilts

oh yea, the negative side affects that I have personally experienced is some unusual nightmares from time to time, the occasional sleepless night, and, about every six or seven months, my knees swell up...so I go off it for a week, to detox, (that's a week I spend entirely in bed), the swelling disappears, and I go right back on it. That's all!!

Bernie942

I was fortunate enough to get one of the few physicians in our area who knows about and treats fibromyalgia. He did tests to rule out rh, thyroid disease, lupus, and within two visits I, thank you God, knew what had been happening to me for three years. I know it's chronic but at least now I know I'm not losing my mind or just turned whimpy.

Wendy54

Rose, I read the page you had suggested. It is the same material my doctor and I reviewed together before I started. My feelings are, everything comes with a side effect. My pain was so unbearable and with the arthitis I was down and out of energy. I have my blood taken every two weeks and he keeps on top of all my organs. At age 59 it was the only option that worked and was available. Now at 65, I am moving and going places. I even joined this board and am just learning to quilt. Something I wanted to do for many years.

Sometimes you just have to jump into the deep end. It is my choice and I know what can happen. So I will keep swimming. I hope you find something that will work for you. Thanks for sharing. God Bless

:lol: :lol:

jljack

YaY!!! I am so happy to hear that you are having good result with LDN, as I am with RA. We need to get the word out about this wonderful, simple, beneficial drug. It has changed my life!!!