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Celebrating 20 years of diagnosed fibro
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Date Joined Aug 2008
Total Posts : 1
Posted 8/20/2008 8:44 AM (GMT -7)
I just realized it was 20 years ago this month that I was first diagnosed with fibro. I think I had it for 5-10 years before that, but they only officially created the diagnosis in 1987, and here are the highlights of my experience:
--Exercise: There is no substitute for it. You do not need to lift weights, you do not need to go to the gym. Everyone I know says that the single most important thing is to do something continuous that raises your heart rate for 20 minutes. I know you're tired, I know you are sore, I know you are so depressed that you don't care about
feeling better. I know these things from personal experience. Above all, I know what having a job can do to your ability to do anything but collapse. Generally, before I became so fit and healthy no one believes I have this disabling condition. Once I began to know--like on a cellular level-- that there is a connection between exercise and feeling better, it won't matter so much that you may have to sit or lie down for 40 minutes after 20 minutes' walk. And, in my experience, while walking is important, the weight machines at the gym do things for me that I don't get anywhere else except at the very high-deductible physical therapist.
--Vicodin: At first, they gave me high-powered NSAIDS (and experiments with different antidepressants), and now people who specialize in fibro say the long-term use of high doses of motrin, aleve, aspirin and the like are likely the source of damage to the intestinal villi that is a major underlying cause of fibro. I went to one "all fibro, all the time" doc (around 1998) who said, "Take 2 viciodin a day for the rest of your life, and you'll be higher functioning, lower pain. Take two NSAIDS and you'll die sooner." That's what he said, not what I believe.
What I believe is that I saw an improvement when, in my early 40s, I stopped taking NSAIDs and started having access to a couple of 5mg vicodins a day (and often only taking half of one twice a day for years). Now, in my 50s, for a variety of reasons, but mostly fibro getting worse and arthritis becoming a big factor, I am taking 3 vicodins and a couple of aspirin more days than not.
--Gabapentin: Around 1994, I started taking Gabapentin (Neurontin) when it was selling for $600 a month (retail rack rate, thankfully my insurance then was pretty good). My experience with it then was that at first I thought it was a miracle, and then after a while I began to wonder if it was doing anything at all. I would stop taking it for a few months, without any noticeable effect, and then on a really bad day, I would try it again and the miracle was back. Nowadays, I take 200 mg 3x a day, and on a couple of trips in the past year I have run completely out of it. I feel it in a day, and, once I get the Rx filled, I am better in hours.
--Lyrica: As to claims that Lyrica is the only FDA approved drug for fibro, that is true. However, here's what they DON'T tell you: Neurontin has been generic since around 2000, and nobody does clinical trials on new uses for generics. (Although you would think this would be a good thing for our own FDA to do, or at the very least for our insurance companies to underwrite somehow...) I have tried Lyrica, and other than a copy 5x higher, it didn't seem to have any effect different from Gabapentin. What I also know about
this is that the VA won't dispense Lyrica, only Gabapentin, and the VA has some interesting studies to back that up. I don't have a link, but you can google that if you're determined.
--GHB: Yes, THAT GHB, the date rape drug. It is marketed as an "orphan drug" called Xyrem, although until around 1990, it was sold in health food stores as a bodybuilding supplement. I first heard about
this when a sleep clinic was doing clinical trials around 1998. I wasn't able to do the overnights for the study, but later on I went to the same sleep clinic because they got approval (or scientific basis?) to use it for fibro. They found that this drug for narcolepsy was also clearing up symptoms of fibromyalgia. In order to qualify, you have to have a sleep disorder called alpha intrusion (your alpha waves--the brain waves you get when you close your eyes and relax, but you're not asleep--intrude on your normal restorative sleep brain waves.)
When I first started taking it, it was a miracle. The first thing I noticed was the almost complete disappearance of mid-day fatigue. The next thing I noticed was that I was making no effort to change my food habits, although I wasn't HUNGRY all the time, and I began keeping track of my weight when I had lost maybe 6-7 pounds. Between April of 2005 and February of 2006, I lost 35 pounds without even trying. I also noticed dramatic differences in my hair, which my hairdresser confirmed--there was lots of new hairs growing in, and it had more of a wavy texture. I thought my skin looked better, and my husband appreciated my increased interest in him.
The rack rate of this drug is something like $700 a month, and the United Health Care co-pay was $50 when I started. It went down to $30 the next year, which suggested to me that they were seeing a great decrease in the healthcare costs of fibro patients, as they had with me.
However, this began to change when I took a fall that blew out my c4-5 disk in my neck in February of 06. Curiously, the fall didn't have any immediate damage present except a big honking bruise on my forearm, just in front of my elbow, where I had made the most contact on the stairs. It was at that very point that I began to gain weight again, although it was much more slowly than the weight loss. I could tell because I had been faithfully (proudly) keeping records. Big symptoms emerged, including mind-numbing pain and the eventual loss of the use of my arm, and in July 2006 I finally got surgery to fuse my C4-5 together. The symptoms from the injury subsided rapidly, although the fibro symptoms were back big time almost immediately. A year later, I had gained 15 pounds, and I was beginning to notice that my hair and skin were back to where they were before. It was during that time I applied for social security disability, and I was turned down. When I went to see a lawyer about
it, he said, essentially, you look too good to be disabled, so I am not going to offer you much encouragement about
the appeal process. (That's another story.)
In April of this year, we got new insurance (Aetna) who doesn't cover Xyrem for fibro. At the time, I didn't really notice any immediate impact. I haven't had any Xyrem since May 1, and the pain and fatigue is definitely increasing. I am almost back to the rather troublesome weight where I started, gaining 6 pounds since May 1.
Bottom line: Don't expect weight loss. My doc said that's a very rare side effect. If you have insurance that covers fibro, or if you can afford the drug otherwise, you can find a sleep center that can find out if you are a candidate. I got mine from Tri-State Sleep Disorders in Cincinnati, and you could probably call them to find a center in your area.
Hope some of this is helpful. It's now the middle of the day and surprise, I am profoundly fatigued.
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Date Joined Apr 2005
Total Posts : 17155
Posted 8/20/2008 9:32 AM (GMT -7)
Hi, Eliza, and welcome! I'm so glad you joined in! You really have been through a lot, as most of us have that have had fibro for many years. I received my diagnosis 21 years ago. Finding a doctor that believes in fibromyalgia is a big challenge but is so important.
As far as the medications go, it is a trial and error type thing. What works for one may not work for another. Also, sometimes medication will work wonderfully well but then the effects of it seems to wear off.
Lyrica seems to be what the doctors are prescribing a lot now. It is very close to the medication Neurotin. We have members that absolutely swear by Lyrica and others that swear AT Lyrica.
I have been on ibuprofen and Tylenol for 21 years and have had no intestinal problems. I hope that continues. I have Crohn's, to boot, but the ibuprofen has worked well for me so far.
Taking a lot of Vicodin can cause intestinal problems. I slows down the intestines and that isn't good. So, I guess the bottom line is you need to try things to see what helps your system function better with fibro.
I have never heard of the date rape drug or that it is used with fibro. I am going to check that out, though. Thanks for telling us about
I totally agree with you about
exercise. I walk every day for nearly a half an hour. It's the first thing I do and it really gets the blood flowing and I feel better doing it.
I do hope you start to feel better soon. Flares are pretty miserable. Have you tried rice or bean bags that you heat in the microwave? They give off a moist heat that really helps. Also, check out the Fibro 101 thread. It is the second thread on the forum. You will find links to good info about
fibro. One is a link to great stretching exercises. They really do work and feel good.
Meanwhile, take care and feel better. Hope to hear more from you soon!
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7
Post Edited (Sherrine) : 8/20/2008 11:25:07 AM (GMT-6)
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Date Joined Aug 2008
Total Posts : 320
Posted 8/20/2008 9:37 AM (GMT -7)
Thank you Eliza. I had someone pm me on another forum about
Xyrem. I must admit I was shy about
asking my pain clinic about
it. I think I will now though. I did read up on it some, and it seems to be much safer than Lyrica or Neurontin; neither of which I can take. I have bulging discs in c4-6 with stenosis, bones spurs and straightening of the curve; bulging discs with stenosis in L4-5 with theS1 nerve being pushed on; disc protusion at T7-8 and T8-9 indenting thecal sac; and degeneration of the facet joint at L1 & T12.
So with this amount of stuff going on, plus Fibromyalgia & Crohn's, I am desperate to get some relief. My meds give me minimal relief at best. I am so limited in what I can take there is not alot of hope. I do work every day. I try to walk as often as I can.
Thank you for this testimony. you have given me the courage I needed to request this drug!
Crohn's, Fibromyalgia, Several bad discs, bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Stricture
When I am weak, then am I strong
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