| T O P I C R E V I E W |
| EnchantedWoodsGirl |
Posted - Jan 14 2008 : 08:33:19 AM
Has anyone been put on Lyrica for pain for their Fibro yet? I have been on it for a few weeks and I do see some improvement. Low dose, is only 50mgs and I take three times a day. It helps with the nerve pain and burning. I did notice that you must keep a consistent level of it in your or it does not work as well.
I go to rheumatologist mid month and I will check with her on dosage etc, as my family MD put me on it. For you gals that suffer with this, you might want to check in to it.
Kathy of the Enchanted Wood
Farmgirl Sister #59
http://enchantedwoodmusings.blogspot.com/
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| 10 L A T E S T R E P L I E S (Newest First) |
| therusticcottage |
Posted - Jan 14 2008 : 10:18:29 PM
You go girl!! Fibromyalgia is a disease. I've watched my daughter and many friends suffer from it for years. But of course the insurance don't want to recognize it as a disease because then they'll have to pay for treatment, right?
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PROUD FARMGIRL SISTER #100
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| Ronna |
Posted - Jan 14 2008 : 8:37:02 PM
If Fibromyalgia is all in our heads, why are there people collecting Social Security Disability benefits? Are they going to convince the govt to end benefits for those who spent years getting diagnosed and more years getting approved?
I'm very fortunate that my case is mild to moderate and I try not to let it interfere with my life. Easier said than done sometimes. I do get relief with Ultram/Ultracet and take a Flexeril so I can relax and sleep at night. Have thought I would ask about Lyrica when I go for my next Dr visit.
Thanks for those of you speaking up for the rest of us.
Ronna |
| EnchantedWoodsGirl |
Posted - Jan 14 2008 : 7:47:44 PM
I am taking 50mgs three times a day of the Lyrica - what is the maximum dose you can take? I try not to miss any doses as I usually can tell when I have by the increase in pain. I imagine that the Lyrica is similar in action to Neurontin (Sp)- I did that for a short time too.
If I have a really dreadful pain day I have to take Vicodin - really strong dose so I half it and then an hour or more later take the other half. Guess I don't like the high feeling from it but at least it makes you forget your pain.
I have stopped taking my Ambien when I went on the Lyrica but may sometimes take a Xanax if I have trouble sleeping. The Lyrica also seems to make me feel more balanced if that makes any sense.
Does any one else get the burning down their legs and in their feet? And also the foot pain that a few winters ago I thought I was going crippled. Also did anyone ever have the rheumatoid test come back positive one time and then negative thereafter?
Kathy of the Enchanted Wood
Farmgirl Sister #59
http://enchantedwoodmusings.blogspot.com/
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| Utahfarmgirl |
Posted - Jan 14 2008 : 6:41:04 PM
Thanks, Kathy, and you said it so well. Isn't it just awful that our lives seem to be controlled by big business - insurance companies, drug companies, and who knows what else! It just makes me mad.
Do you think I'll get an answer? If he's a reporter worth his salt, he'll answer. We'll see.
Thanks again, Sister
Patricia
Proud Farmgirl Sister #19
check out my etsy site http://ThePlayfulFarmgirl.etsy.com
Take me home, country roads |
| EnchantedWoodsGirl |
Posted - Jan 14 2008 : 6:19:49 PM
Great letter Patricia - everything you have said is so true. I am sorry for anyone who has this disease, including myself when it disables me enough. You are right, they can't see our pain, it is not like cancer that is usually pretty noticable - we carry our pain inside - we struggle from day to day.
I think what makes the fibro worse is that the pain migrates from place to place. You never know where it will show up next. Will it cripple up your feet and make walking a dreaded task? Will your elbows swell up so bad you can't use the computer? Will you have burning pain down your legs till you want to cry?
Fibro was considered a "wastebasket" diagnoses for many years, but, the insurance companies will continue to pay for it, it means more money for the drug companies - and unfortunately, drs, insurance companies and drug companies profit from our pain.
Bless you for your great letter!
Kathy
Kathy of the Enchanted Wood
Farmgirl Sister #59
http://enchantedwoodmusings.blogspot.com/
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| Utahfarmgirl |
Posted - Jan 14 2008 : 5:40:39 PM
You're welcome. My pleasure. I was so angry this morning when I read the paper. It brought back so many ugly memories. My dear son Patrick, who I know adores me, said to me a couple of years ago "Mom, being sick is your hobby." That broke my heart but I didn't let him know. I just don't talk about my FM in his presence. But that's the opinion a lot of people have because they can't see into our bodies and see the pain. It's not a broken limb that's visible. It's not the effects of cancer that are easy to spot.
Then my husband mentioned to me that he thought the insurance companies wouldn't have to pay if FM was not a disease and my reporter's instincts took over. Hence the letter. Who knows, maybe he got $ for planting this seed.
I just know I had to speak for us. I appreciate your note. I cried for a while this morning and you made me feel better.
love,
Patricia
Proud Farmgirl Sister #19
check out my etsy site http://ThePlayfulFarmgirl.etsy.com
Take me home, country roads |
| Carol Sue |
Posted - Jan 14 2008 : 2:02:45 PM
Whhhooohhiiieee girl,
Patricia, thank you.
I was diagnosed in October and am just starting with trying to figure out what works for me.
Thank you for standing up for all of us who suffer with this and get no answers.
Carol Sue
listening to the quiet moments
Farmgirl #39
www.Quitemoments.blogspot.com |
| Utahfarmgirl |
Posted - Jan 14 2008 : 1:51:58 PM
Hey, guys, I wrote to the reporter and defended us. Here's the email:
Mr. Berenson, I read with great interest your article on Fibromyalgia and I would like to comment. I must say, your article sends treatment of this disease (and it is a disease) back into the dark ages.
I have had FM for over 30 years, back when it was called Fibrositis. I had it when doctors said, it's all in your head, you're a woman (so naturally I was weak and seeking attention) and there's nothing showing up on our tests. So go home and take up a hobby to keep you busy.
I was already busy with a husband, three children and a job. So I worked through the pain and I continue to work through it. There was no "payoff" for me - no sitting on my tush while someone waited on me, no "poor baby" from anyone, no reason for me to create this pain.
Finally, some years ago, tests were developed (you didn't mention these - the trigger points test among others) and FM was recognized as a disease. But nobody had any answers. "Try exercise" (great, we exercise although the pain is excruciating but it doesn't help), "Try water exercise" (Great until you get out of the water), see a counselor (which really ticked me off but I did it. Again, he couldn't figure out anything that would help)"try this medicine or that" (some helped a little, nothing helps very much).
Then FM becomes the current disease of the week and attention is lavished on it. Doctors recognize it as an auto-immune and neurological disease. A magazine is devoted to it. Somebody says, try Lyrica.
So we try. It helps a little, and anything is better than nothing.
I used to be a reporter in NY, Alex, and in my humble opinion, you dropped the ball when you failed to look into the insurance companies' involvement in all this. If FM is demoted to a non-disease, they don't have to pay for treatment, then, do they?
Ah, could payoffs be the reason these doctors who formerly admitted FM was a disease now say, gee, I've changed my mind? Doctoral degrees don't impress me. My husband has three of them. Doctors are not gods.
Come on, with any medical condition, recognizing it encourages people to to think of themselves as sick. That's the argument?
If Mr. Woolfe has become cynical and discouraged about the diagnosis, consider how we who suffer every day walking from the car to the house, reaching for something in a cabinet, or just being in pain all the time feel. That's no reason to deny the disease. When you deny the disease, you impune the honesty and mental health of the sufferer. I resent that.
Mr. Wolfe says those who identified FM as a disease now believe it "clearly" is not. What changed? What data can he offer? What is so clear? That he considers the condition a physical resonse to stress, depression and economic and social anxiety. Who doesn't have a degree of those things in their lives? A week argument, it seems to me. And even if that is true (I'm not saying it is), it is still a real condition.
I really wish you had investigated more, digged into the insurance companies' reactions to this news, found out if all this nonsense is a prelude to their declaring FM is not a disease and therefore they will not pay for treatment. Looked into the posibility of payoffs. If it had been my story, I would have.
Unless, of course, you're on that payoff list, too.
Sincerely (very sincerely)
Patricia Schaller
www.wardrobe_lady@hotmail.com
check out my etsy site http://ThePlayfulFarmgirl.etsy.com
Take me home, country roads |
| Utahfarmgirl |
Posted - Jan 14 2008 : 12:01:09 PM
I've worked my way up to the highest dose and it does help a little so I'm going to continue. I had using drugs but nothing else has worked and believe me, in the 30 years I've had FM I've tried everything. I thought I was getting some relief with accupuncture a few months back but it turned out to be nothing.
And I'm hopping mad (if I could hop). This morning there was a story in our paper by some guy at the NY Times about FM being a non-disease and people are taking Lyrica for nothing. It turns out some doctors who said it was a real thing have changed their minds and now believe it's all in our heads. That everybody has aches and pains and we're making a big deal over nothing. I cried because it brought back all those comments from so long ago. Even my son once said, "Mom, your hobby is being sick." Then hubby said, "Of course they're saying that now. If FM is not a real disease, the insurance companies don't have to pay for it. Guess who's behind this stuff!" And a light bulb went off. Now I'm just plain mad for several reasons and I plan to write to that reporter today and tell him he didn't cover all the angles (I used to be a reporter and I know how complete one must be) and see what he says.
If FM is a non-disease and comes from our emotional state, then there would be a payoff for being sick like being able to sit around all day and have people wait on you. I've always worked through it. The only time I stop working is when I just can't do it, which isn't often enough to be a payoff. This really ticks me off.
And even if it comes from our emotional state, it still is real.
Patricia
Proud Farmgirl Sister #19
check out my etsy site http://ThePlayfulFarmgirl.etsy.com
Take me home, country roads |
| Georgia Girl |
Posted - Jan 14 2008 : 09:09:38 AM
I have heard both pros and cons. I am the worst medicine taker there is though. I hate to take meds and don't do it consistently so I can't be on one that you have to take daily. Let me know how it continures to work for you though.
Denise
Proud Farmgirl Sister #113
http://mybigcityfarm.blogspot.com/ |
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