I have a subscription to Woman’s Day magazine. I got it so I could pass it on to my mother after I finished reading it. She liked to read it but couldn’t afford it. I offered her the subscription but that was “charity” and she didn’t need charity. So I got and “shared” it with her – sharing was good. Since she died in January, I’ve been skimming the magazine before tossing it into the recycle bucket.
An article in the most recent issue I received (August 1, 2008, Vol 71, Issue 13) caught my eye. It was in the Health section on p 70 and was entitled “living in pain.” Since I’ve been doing that for over 40 years, I decided to check it out. Sure enough, the article was a sort-of first person account of living with fibromyalgia. I thought it might be interesting and read on.
The article was the story of Carolyn Bishop (age 39) and her 12 year old daughter. Much of the story sounded very familiar. Like myself, she began experiencing symptoms of fibromyalgia when she was in her early teens. She searched online for help eventually and discovered fibromyalgia. I started my journey with fibromyalgia before it had a name. Her doctor didn’t believe she had fibromyalgia. My doctors thought it was all “in my head.” I found my “diagnosis” in a magazine (Ladies Home Journal) in the late 1980’s. I was lucky enough to have a doctor who said, “You’re right.”
My daughter, too, started having fibromyalgia symptoms in her early teens. Now, of course, they have many more tools to try to diagnose pain. So she got to have a bone scan and MRI (all negative) before her doctor would consider fibromyalgia. After all, just because I had fibromyalgia, I shouldn’t jump to the conclusion that my daughter did. I knew better – her symptoms were a carbon copy of things I experienced at her age. As a result of the doctor’s attitude, my daughter (now 29) has just recently come out of denial and told me that she had to, somewhat grudgingly, admit I had been right about the fibromyalgia.
As I’ve written elsewhere, I believe fibromyalgia is genetic in some way – my father had it, then me, then my daughter. I believe it is related to hormones in some way – my fibromyalgia flare-ups often coincided with the low estrogen part of my menstrual cycle.
Carolyn attempted to obtain Social Security Disability Income because she was unable to work. Her doctor refused to sign the form that said she couldn’t work due to her fibromyalgia because he couldn’t “medically differentiate between fibromyalgia and laziness.” She was shocked. I’d have been outraged. I’d have fired the doctor.
Carolyn, with no health insurance and no job, kept searching the web. She found a website that mentioned a doctor in her area that specialized in fibromyalgia. When she called to make an appointment, she got more “encouraging” news – she might be eligible to participate in a trial for the drug called Lyrica. All of a sudden, I was seeing red – red flags, that is. Something here is just not right. I read on.
Carolyn was diagnosed with 17 of 18 tender points. She started taking Lyrica and started feeling better. She now takes “Lyrica as well as a number of the drugs and supplements.” [22 pills a day!] Her daughter is also on the same drugs. Carolyn has changed careers – she’s now a drug technician and studying to be a drug and alcohol counselor. She home schools her daughter because the honors student began failing after the fibromyalgia kicked in.
Carolyn is grateful that her daughter won’t have to spend decades in pain, wondering what’s wrong. She should also be grateful that her daughter isn’t in denial and doesn’t give her the “just because you have it, doesn’t mean I do” line.
The article had an inset box with information on the drug Lyrica, a new treatment option. It notes that about a third of patients who try it have a substantial reduction in pain. My thought – that means two thirds don’t. There can be side effects: dizziness and sedation (those would be great on the fibro fog days), weight gain (at 5′3″, 219 lbs, I can’t take that risk), swelling of the hands and feet (I have that issue already, from the weight) and allergic reactions that range from blisters and hives to severe swelling of the tongue and breathing problems.
When I finished reading the article, I noticed that the bottom of that page (p 76) and the following 2 pages (p 77 & 78) was advertising for Plavix, a drug produced by Bristol-Myers Squibb. I wondered where the Lyrica ad was. So I started checking ads from the beginning of the article through several pages after it. Here’s what I found:
- Page 70 Full first page of article with photo of Carolyn, a drug lab technician & her daughter
- Page 71 Ad: Dr Scholl’s Pain Relief Orthotics – full page
- Page 72 2/3 page – article; 1/3 page Ad: Crestor made by AstraZeneca
- Page 73 Ad: Crestor by AstraZeneca – full page
- Page 74 Ad: Crestor by AstraZeneca – full page resembling “patient information insert”
- Page 75 Ad: Medifast diet meals program – full page
- Page 76 2/3 page – end of article; 1/3 page Ad: Plavix made by Bristol-Myers Squibb
- Page 77 Ad: Plavix by Bristol-Myers Squibb – full page
- Page 78 Ad: Plavix by Bristol-Myers Squibb – full page resembling “patient information insert”
- Page 79 Ad: Samsung “Jitterbug” cell phone – full page
- Page 80 Health article: Walk Off Weight, anywhere, anytime – full page
- Page 81 (ahh, here it is) Ad: Lyrica made by Pfizer – full page – directed at fibromyalgia patients
- Page 82 Ad: Lyrica by Pfizer – full page resembling “patient information insert”
In 13 pages you have 2 1/3 pages of the fibromyalgia article, 1 page of the walking article, 2 pages of other advertising and 6 2/3 pages of drug company advertising. No wonder our drugs cost so much!
I think it’s interesting that Lyrica is being heavily marketed to people who suffer with fibromyalgia as “the first FDA approved treatment to help relieve fibromyalgia pain” when it is used more often for people who suffer from nerve pain resulting from diabetes or pain after shingles.
I’m not saying Lyrica can’t work for some fibromyalgia patients and if your doctor thinks you are a good candidate to try it, make that decision with your doctor. Just do it with your eyes open and be aware that even the best drugs have side effects.
The most common side effects of Lyrica, according to the advertising, are:
- Dizziness
- Sleepiness
- Weight gain
- Blurry vision
- Dry mouth
- Constipation
- Feeling “high”
- Swelling of hands and feet
- Balance problems
- Trouble concentrating
- Increased appetite
Possible serious side effects include:
- Serious allergic reaction
- Dizziness and sleepiness
- Eyesight problems including blurry vision
- Weight gain with swelling of the hands and feet. Weight gain may affect control of diabetes. Weight gain and swelling may be serious for people with heart problems.
- Unexplained muscle pain, soreness or weakness along with fever or a tired feeling
- Skin sores. Lyrica caused skin sores in animal trials but not in human trials.
You may have a higher chance of swelling, hives or gaining weight if you are taking certain diabetes medicines or ACE inhibitors.
Medicines that already make you sleepy or dizzy may make you feel more sleepy or dizzy with Lyrica.
Now you have information that may help you make an informed decision about Lyrica. I know that I will probably not try it. I’m not diabetic but my weight is already high enough (and yes, I’m working on that problem). I have enough sleepiness, fatigue, unexplained muscle pain and skin issues as it is – I don’t want to invite more of them into my life.
I’d rather have something to keep me awake and pain free. Maybe the drug companies can start working on something like that!
Hi. I found your blog at the start of WordPress. Im 31 years old, living in Sweden. I was diagnosed with “Fibro” when i was 27 yrs old but was ill many yrs before that (im trying to dust of my english so excuse me if not well spelled
… Do you have the article? I would really like to read it.. Difficult since i live in Sweden… Hm… I eat painkillers that are called “Brufen” and antidepressants, that´s what the doctors recommend here in our country. I also go at fysiotherapy in water and other things. What help have you gotten troughout the years? What do you work with? ?
If you still do work? Im home with my 10 month old son and on sickness benefit. My husband is at home taking care of our som since my Fibro is worse since i gave birth… I have so many things i would like to talk to you about. Don´t think i´m crazy.. Would be intereseting to have contact with someone else in another country with the same diagnos. Maybe your daughter would like to exchange experiences?
In Sweden the Fibro isn´t an accepted illness still after so many years. How is it in your country? Hope to hear from you soon. You can e mail me at superquinnan@gmail.com or trough my blog (it´s written in swedish).. Kind regards Camilla
Fibro is a very sneaky condition – It does not play fair.
I have had quite a few clients with fibro (I have been a personal trainer for 19+ years).
Not that exercise is a panacea for fibro (I get my clients usually after they have gone through the worst of it and they are starting to feel a little better), but I have seen some pretty exciting changes in EVERY client that I worked with.
More info here – http://healthhabits.wordpress.com/2008/05/13/how-to-beat-emotional-eating/
If anyone has questions, I would be happy to answer – No strings attached, just good karma
My best wishes to you and your family
I appreciate the honesty of this blog. I received it as a link to a Fibro Support Group I subscribe to.I agree about the cost of medication. I am on enough as it is .I do not need another one to put on an addition 20+ pounds. I am still trying to get rid of the “modest”m weight gain my doctor told me “may” be a side affect from the other antidepressants I am already on.
I have had Fibromyalgia and Chronic Fatigue Syndrome for almost 20 years. It can be tough now getting a diagnosis but just imagine what it was like almost 20 years ago! What a nightmare! Best of luck to all of you.
I have Bell’s Palsy and enjoy your blog very much. First time I’ve commented, but have been reading here and there.
Great blog. I enjoy reading it every chance I get and value your opinions!