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Fighting Fibromyalgia

Audio

Aired 10/19/09

Fibromyalgia is a common condition characterized by long-term, body-wide pain. We speak with a local doctor who specializes in fibromyalgia treatment as well as a woman who is living with the condition

MAUREEN CAVANAUGH (Host): I'm Maureen Cavanaugh. You're listening to These Days on KPBS. There are lots of strange aches and pains people get. You wake up and out of nowhere, you've got some kind of bruise or soreness. Most of the time all you have to do it wait a few hours or maybe a day or two, and the symptoms are gone. But for people who have the disease called fibromyalgia, the strange aches and pains don't go away. There are no broken bones, no bruises, no physical signs of injury. Yet people who suffer from the disease say their bodies hurt: back, legs, muscles, skin. It hurts to be touched, and without treatment it doesn't get better. After years of being dismissed by the medical profession as hysterics and malingerers, people with fibromyalgia are now being taken seriously. The CDC and other health organizations have officially recognized the syndrome and, you may even have seen television ads for the new prescription drugs designed to treat it. But fibromyalgia is still difficult to diagnose and is not well understood. To tell us what’s known about the syndrome and what the latest research is revealing, I’d like to welcome my guests. Dr. Andrew Blumenfeld is with The Neurology Center, and Dr. Blumenfeld, welcome to These Days.

DR. ANDREW BLUMENFELD (Physician, The Neurology Center): Good morning. Thank you for having me.

CAVANAUGH: And Maria Hoover is a fibromyalgia patient who’s joining us this morning. Maria, welcome.

MARIA HOOVER (Fibromyalgia Patient): Thank you for having me here.

CAVANAUGH: Now, Dr. Blumenfeld, how do you describe fibromyalgia? Is it a disease? A syndrome? A condition? What is it?

DR. BLUMENFELD: Well, fibromyalgia’s now recognized as a disease with very clear cut symptoms and a lot of those symptoms you explained very well. You know, the widespread muscle pains, the tenderness, but in addition to that patients feel a lot of fatigue, stiffness when they wake up. Their sleep pattern is often interrupted and they sleep very poorly and have daytime fatigue associated with this muscle tenderness and aching. And it’s widespread so that it affects not only their neck and shoulders but going down into the back and the arms and the legs as well.

CAVANAUGH: Now, am I also right in saying that there really – if you did an x-ray, if you examine the patient, that you wouldn’t necessarily find anything wrong?

DR. BLUMENFELD: Yes, that’s exactly right. If you look at these tender areas and there are very specific spots that we look at when we’re making the diagnosis, there are 18 sites that we examine for tenderness. And if you did a biopsy and you looked at those areas under a microscope, you wouldn’t see any changes there. So the problem with the disease is not really stemming from the site where you feel the tenderness. What we now think is the problem is that this is much more of a neurological condition where the brain’s perception of pain is altered so that patients with fibromyalgia have a lower stimulus that will generate a pain sensation than patients without fibromyalgia.

CAVANAUGH: Now in the past, and perhaps even now, it is very difficult to diagnose this disease. Has this – these 18 points that you just mentioned of tenderness and so forth, is that relatively new?

DR. BLUMENFELD: So these points were established by the American Academy of Rheumatology and they were mainly done to help do research studies, and that has evolved only really over this last decade. We see that the first drug to be approved for fibromyalgia was just in 2007. So this is something that is evolving very quickly now but has taken a long time to get to this point. On average, patients with fibromyalgia take about five years to get diagnosed and often visit multiple doctors before somebody thinks about this and comes to the correct diagnosis.

CAVANAUGH: Dr. Blumenfeld, are there still some doctors who do not believe this is a real condition?

DR. BLUMENFELD: I think that is still an issue. I think that rheumatologists in general have cared for these patients and a lot of the times that’s where the diagnosis has been made. Possibly in family practice we see sometimes a diagnosis made, but a lot of the other specialties we don’t really see this high up on the radar screen.

CAVANAUGH: I’m speaking with Dr. Andrew Blumenfeld with The Neurology Center, and we are talking about the disease called fibromyalgia. I’d like to bring in Maria Hoover into our conversation. She has fibromyalgia and she runs a fibromyalgia support group. Maria, I wonder, how did you know that you had this disease? When did you get your diagnosis?

MARIA HOOVER (patient): I was diagnosed about five years ago but I kind of knew I had it just from doing my own research on it. I just didn’t want to have it so I didn’t accept that I had it.

CAVANAUGH: Oh, yeah. Can you let us know a little bit – I know that it’s so difficult, what this feels like, what everyday life is like when you have this condition?

HOOVER: You know, it’s like you’re carrying around pain all the time. When I wake up in the morning I am so stiff, and that’s the worst time for me. Sometimes, you know, it’s – to me it’s kind of like when you eat ice cream and you get that ice cream headache.

CAVANAUGH: Umm-hmm.

HOOVER: And it’s really intense and you can’t do anything about it, but that’s been my back all the way down my spine and sometimes into my legs, and it’s excruciating. And sometimes it just makes me want to cry. You know, I lay down on a hot pad for a while and that helps.

CAVANAUGH: Now before they’ve come out with a prescription drug specifically for fibromyalgia, you know, I’m just trying to think of this the way norm – people normally deal with the aches and pains that they have. And so you take a couple of aspirins, maybe some pain pills or something, and no relief. Is that right?

HOOVER: Sometimes it’ll take the edge off.

CAVANAUGH: Umm-hmm.

HOOVER: But you still have – the stiffness doesn’t go away and the pain is still there but it does, it takes the edge off. And then there’s a lot of us who have reactions to medicines. It’s, I guess, one of the issues that fibromyalgia people deal with, too. And for me, I can’t have any anti-inflammatories so everything I’ve tried, I’ve broken out in rashes with or hives or something.

CAVANAUGH: Right.

HOOVER: So, you know, something like Tylenol, I can take. And like I said, it just – it just take the edge off.

CAVANAUGH: Now, Dr. Blumenfeld, as you were saying earlier, the leading edge of research involves exploring how fibromyalgia may alter pain perception in the brain. Does that mean that the problem is in the brain itself?

DR. BLUMENFELD: Yes, this is the direction that research is heading, is that the pain pathways in the brain of a patient with fibromyalgia seem to be hypersensitive so that they light up on MRI scans when we apply painful stimuli at a much earlier stage in the fibromyalgia patient than in some control patient who doesn’t have the disease. So a lot of the medications and treatments that we use actually modify brain pathways. The nerve impulses that are traveling up to the brain, this is the target for new medications and research in this area.

CAVANAUGH: About how many Americans, Doctor, have fibromyalgia?

DR. BLUMENFELD: There are about 5 million Americans that suffer with the disease.

CAVANAUGH: And we usually hear that this is a disease that affects women. Are men also affected?

DR. BLUMENFELD: Yes, women are affected far more frequently than men, and there may be a genetic basis. This does tend to run in families. But we do see it also occurring in men but at a much lower rate.

CAVANAUGH: And what’s a typical age that someone might get stricken with fibromyalgia?

DR. BLUMENFELD: So the usual age range, it starts in the thirties, the mid-thirties, and then it can continue up into the sixties, so 35 to 60 is sort of the average age range that we see these patients.

CAVANAUGH: Now, Maria, after having had fibromyalgia for such a long time, you must see like TV ads and hear talk shows like this talking about it, it must come as some, I don’t know, vindication or relief because you suffered alone with this disease for a long time, didn’t you?

HOOVER: Yeah. In fact, I really believe I had it all my life. As a child, I had all the symptoms of it, too, and it – I mean, I remember going to the doctor and having him tell my father, overhearing him tell my father that it was psychosomatic. And I had to look up psychosomatic at that time. But it is a relief to see it out there so much more. For me, I only accepted in December, really accepted that I had it, and since then it’s been so much easier to talk to people about. But most of the people even in my support group and that, the more people talk about it, the more you feel like people are understanding because it’s very lonely thinking people are going to think that you’re just lazy or you can’t tolerate anything because you’re, you know, you’re weak. And most of us feel, on the inside, I always say I’m a hyperactive person in a hypoactive body.

CAVANAUGH: Umm-hmm.

HOOVER: I have plans and my body doesn’t go out to meet those plans, so it’s hard to think of, you know, what people might be thinking about us when we’re not up to the challenge.

CAVANAUGH: Now, Maria, in leading your support group, do the people who, when you say they have somebody to talk to now because there’s a support group, do they discuss some of the emotional stigmas that follow this disease?

HOOVER: Oh, absolutely. You know, I think, especially when people first find out they have fibromyalgia, for instance there’s a lot of times people will have the disabled parking stickers and – or placards, and they’ve – I’ve heard stories of people parking there and other people walking by and giving them, you know, bad gestures or yelling at them for parking when they look completely normal, and that’s one of the most painful things is when you’re in agony and someone’s saying but you look fine. Or, you’re looking great. Or, you look healthy. And, oh, I hear that all the time. Emotionally, that just socks you in the self-esteem. And our ladies in our support group have told me that, you know, that’s the weakest area. It’s like you just – you start feeling like dirt.

CAVANAUGH: Now, Dr. Blumenfeld, you must – do you recognize the good thing that support groups are, especially for this condition?

DR. BLUMENFELD: Yeah, I think that Maria highlights a lot of the important issues that a support group can help with, educating patients about the disease and showing areas that they can start to be active in. There are lots of different treatment options that can come out of discussing this with people that have the disease for a long time. So we’re very supportive of support groups and educating patients. A lot of times emotional stress has been a trigger for the condition and then there’s this ongoing stress of having the diagnosis, and a support group is an excellent place to help deal with some of that stress.

CAVANAUGH: You know, if somebody is hearing this show today and say, you know, that sounds a little bit about how I feel, what tips would you give them, Dr. Blumenfeld, to – when they go into their doctor and they perhaps want to be tested for this disease. Is there anything they should say, anything they should ask for?

DR. BLUMENFELD: Unfortunately, there isn’t a blood test or an MRI scan that gives you the diagnosis. I think that sometimes it pays to come out and ask the question directly. You know, is it possible that I have fibromyalgia. I have these areas of tenderness in my neck, my back, my arms, my legs, I’m sleeping poorly, I’m feeling tired, my muscles are stiff and sore. You know, do you think I need to see a rheumatologist to make sure there’s nothing else going on? Because we do need a rheumatologist to rule out other conditions that might mimic fibromyalgia. It’s not that all widespread muscle pain simplifies out to fibromyalgia. You might have the rheumatological condition that requires additional treatment and that needs to be diagnosed. So I think coming out and directly having the conversation with your physician is fine. I would appreciate it if my patients were up front like that and went straight to the point.

CAVANAUGH: And, Maria, I did read that sometimes exercise helps this condition a little bit. Is that what you’ve found?

HOOVER: Absolutely. As I said, I kind of just accepted I had it in December but everything that I’ve been told about exercise I didn’t want to do because it hurt. Everything hurts, and I’m so tired all the time. And then I got involved in it. I own a weight loss and fitness center for women like this, and I got involved in the exercise, and you know it hurts just as much to exercise as it does not to. And I think that as more people start realizing that they’re in the same place, it doesn’t hurt any worse when I exercise and it feels better because, you know what, the most important thing it does is raise my self-esteem.

CAVANAUGH: Right. Well, Dr. Blumenfeld, do you have a website where people might be able to go to find some support groups for this disease?

DR. BLUMENFELD: Yes, we have a website and the National Institutes of Health also has a website as well as the National Fibromyalgia Association. So the website for the Fibromyalgia Association is FMaware.org. And our website is the-headachecenter.com. There’s a dash between ‘the’ and ‘headachecenter.’ A lot of these patients also have chronic daily headache and…

CAVANAUGH: Umm-hmm.

DR. BLUMENFELD: …so there’s an overlap.

CAVANAUGH: I want to thank you both so much for speaking with us today. Dr. Andrew Blumenfeld with The Neurology Center, thank you.

DR. BLUMENFELD: Thank you very much.

CAVANAUGH: And Maria Hoover thank you so much for joining us.

HOOVER: Thank you for bringing the topic up.

CAVANAUGH: And if anyone would like to comment or get the resources that were mentioned during this segment, you can go to KPBS.org/TheseDays. You’ve been listening to These Days on KPBS. Stay with us for the second hour coming up in just a few minutes here on KPBS-FM.

Comments

Avatar for user 'hugoanguiano'

hugoanguiano | October 12, 2009 at 10:16 a.m. ― 5 years, 2 months ago

I was diagnosed with Fibromyalgia almost 18 years ago as a young man of 28. I was totally physically disabled for 2.5 years. Then I tried Hollistc Health alternatives and I have been symptom free for many years. The work of Osteopath Dr. Leon Chaitow and others in the U.K. are tremendously useful. I am now a Holistic Health Practitioner and I teach a class in the San Diego area where I introduce Non Invasive and painless massage and bodywork and dietary life style changes. In the holist health point of view Fibromyalgia represents and all out overloading of a persons Fight-or-Flight response. It must be addressed from many levels. These could include Neutral Bath Hydrotherapy, light exercise like Tai Chi, non-invasive massage and bodywork, holistic eating habits like chewing food well and avoiding certain foods. The most useful therapy that has been found is education. The Fibromyalgia person heals by learning what to do themselves.

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Avatar for user 'bgulino'

bgulino | October 12, 2009 at 10:59 a.m. ― 5 years, 2 months ago

Ms. Hoover eloquently describes the humiliation of being publicly chastised for using a handicapped parking place. Later in the show she informs us that exercise is an important treatment for fibromyalgia. Given the nature of the disease exercise is understandably difficult.

I don't understand why Ms. Hoover is issued a handicapped placard. She can walk and its good for her to walk. Its probably painful and she is understandably reluctant to do it, for which I sympathize.

Am I missing something here?

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Avatar for user 'destiny'

destiny | October 12, 2009 at 12:02 p.m. ― 5 years, 2 months ago

Actually, what I said was that the ladies in my group spoke of these challenges. FM isn't consistent from day to day. Weather, travel, sleep and stress effect everyone but it efects us stronger and with pain and stiffness. Like people with bad hearts, asthma and may other "invisible diseases", we have placards even when we can walk. But wallking is not the best exercise for everyone. I have bursitis in both my hips, chronically. I am painfully aware of every step I take. I make it to a shopping cart and hang on. But I walk in the therapy pool and ride an adapted bike that supports my back, and work out at the center on our isometric toning tables. Then I feel a sense of accomplishment with a little control. Yes, it hurts but it hurts the same as it does if I sit in my chair.

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Avatar for user 'smkurian2009'

smkurian2009 | October 12, 2009 at 2:01 p.m. ― 5 years, 2 months ago

It is surprising that a disease that affects so many people has no clear diagnostic test. We work on biomarker discovery and would like to study patients with FM and possibly come up a with a blood based test for the same. Please feel free to contact me at smkurian@hotmail.com

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Avatar for user 'cindacrawford'

cindacrawford | October 12, 2009 at 2:45 p.m. ― 5 years, 2 months ago

Fibromyalgia, as a chronic health problem, should not be ignored or trivialized. The people who have it should be respected and believed concerning their symptoms. No one would make up this stuff! I am a firm believer that most cases of Fibromyalgia can be overcome, but it may take a slightly different approach for each person. All in all, I find the holistic route to be much more effective than RX pills & shots. If you change how you approach your health, you will get a different result. If you change "enough," then you can find real success. My 15 year battle with Fibromyalgia and Chronic Fatigue Syndrome came to an end more than 5 years ago when I discovered a brand of energy medicine. My improvement was stunningly fast! I so believed in the technique that I put together my own plan. I use it to help people get well today. It's called Sacred Cellular Healing. Please know that I welcome all viewers and listeners to the Health Matters Show at http://www.healthmattersshow.com. Please comment or email me. My very best, Cinda Crawford

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Avatar for user 'Helpful1'

Helpful1 | October 12, 2009 at 4:50 p.m. ― 5 years, 2 months ago

There is a clinical study going on right now in San Diego for individuals with fibromyalgia who are having sleep problems. People who are interested in the study can read more about it at this government website:

http://www.clinicaltrials.gov/ct2/show/NCT00883740?term=fibromyalgia+AND+san+diego&recr=Open&rank=1

Or you can call CNRI at 619-481-5252 for more information.

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Avatar for user 'hbenler'

hbenler | October 13, 2009 at midnight ― 5 years, 2 months ago

Can someone enlighten me about my possible misunderstanding that aches, pains and fatigue symptoms with no objective findings are:
1-grouped into a syndrome
2-named as a chronic disease
3-explained as a brain pain pathway hypersensitivity
4- treated symptomatically with an antidepressant and sometimes even long-term narcotic pain medications ...?

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Avatar for user 'sluggo'

sluggo | October 13, 2009 at 5:22 p.m. ― 5 years, 2 months ago

Thanks for shedding more light on the disease. It's so vast (and has many symptoms and treatments that highly individual) a subject that you could not possibly cover it all in a day, much less an hour.
After a year of all forms of tests by specialists, I was formally diagnosed with FM - since 2004. In my case, the FM pain and fatigue forced me to resign from work, and I am on SSI as permanently diabled indefinitely. Not good - going from a triple digit income to subsidized level living. However I can offer some leads for people to pursue, as follows:
>Wikipedia.com has very good data to help in understanding FM and CFS, as does the Mayo Clinic (.com)
Although I have tried and will continue to, every Nerology based treatment to no avail.Included are Neurontin, Lyrica, Savella ; one might help you. I have had to resort to opiate pain killers which work well and are highly addictive (be careful of this route).
>Trigger points and trigger point pain injections need to be understood as they can be very helpful. Work with doctor or pain speacialists on this.
>Combining Eastern medicine with traditional medicine is very helpful (if not always covered by insurance and therefore can be quite expensive).
>Accupuncture can work very well, and helps me.
Also, massage if you can tolerate and afford it. Reiki is my choice.
>Exercise IS great, when it can be tolerated, even brisk walking.
> Give medical marijuana a try. I have not yet, but am told by others that it can be very effective.
> One of the widely held truths is that there links between FM and depression (not helped by all the stigmas on the show. Almost everyone I know or talk to about
FM and CFS is getting some relief by taking prescribed anti-depressants (myself included). Be open to discussing your symptoms with others!

Finally; don't be shy about letting people know that you have FM, and hopefully are under care from doctor or two that fully understand the disease and routinely work with patients with FM. Nobody is going to come to your aid when you are secretive. Seek and try any and all medical aid and treatment. Let all know how you really feel!
Good Luck, sluggo

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Avatar for user 'destiny'

destiny | October 14, 2009 at 9:32 a.m. ― 5 years, 2 months ago

I agree with you, Sluggo. Absolutely true! Don't be afraid to tell people about fibro. We have nothing to be ashamed of and other people need to be educated so that stigma is removed.

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