some info on fibromyalgia

Monday, May 31, 2010

I'm writing this to share info with a Spark friend. First of all let me say--no, I do not have fibro--for which I am eternally grateful! It's no fun to have. And I'm also not a rheumatologist. And if you have fibro, you will probably want to see a rheumatologist.

But I am a health psychologist--board certified, with 15+ years in a hospital pain clinic, so I do see and treat a lot of fibromyalgia. And I can tell you that seeing a rheumatologist won't fix your fibro. Pills won't, shots won't, and no, you can't have your head put on a different body! You'd still have fibro-fog, anyway! ;)

Fibromyalgia is a complex condition--probably a cluster of related conditions, actually--and ultimately, it demands behavior changes to change mind/brain/body interactions, if you want to deal with fibro effectively.

I haven't found a general review of fibro that gives the whole story, and most of them are too "victim" focused to be of much use. Yes, fibro is really real. But No, disability is not a good answer--people actually get worse after disability.

Yet knowledge is the key if you want to live healthy again. Because you will have to make long-term sustained behavior changes, to change some established biochemical/neuronal pathway/psychophysical interactions and get them working for you again.

Here's a REALLY simplified picture of what happens, physically, to switch you into fibro-land. But while it's simplified, it is the basic process, and I think it helps to know it.

The stress system has lots of protective functions,and one function is to shut down your immune system, so you can put all your energies into survival mode during an emergency. But when you're stressed for too long, even if it's at a fairly low level, your immune system gets tired of being told to shut down. So--it "pulls in its ears", pulls in the receptors for the biochemical signals that tell it to shut down. And that leaves you with an immune system stuck on "on"-. Low level 'on', but still on.

You feel sick, achy; you want --need-- to go lie down and get well. Only no matter how long you lie down, you don't really get better. You may have times with a low-grade fever. You don't want to get up in the morning, you're achy and sore, and never really feel perky and alert. Your sleep is a mess--probably because your stress system continues to shout, biochemically, messing up your calm-down-and-go-to-sleep processes, even though your immune system refuses to listen any more.

Basically, nothing's working right!

It happens most often with years and years of long-term stress signals. I think of that as the "Grand Canyon style"--years of stress erosion that just wears on your processes and changes your brain. But I've also seen fibro happen post-traumatically, "Tsunami-style", when the stress is so overwhelming that it just washes in and changes the brain-function landscape overnight.

Incidentally--why do some people get fibro and some get cancer, or heart disease or chronic back pain or...? I have no idea--and I do not see any evidence that any one else does either--yet! But we will!! And it won't be long--the brain system research is amazing, and the field is growing daily.

No matter how you got here, though--you're here now, if you have fibro. And your job is to get those systems working normally again.

No, we just don't have medicine to really "fix" it, though some can help. But pain pills don't cover it, and no, narcotic pain meds do NOT help--they actually do more damage to the systems inside, and eventually your pain will get worse. (And if you're on Xanax, please get off! It also changes systems, actually increases anxiety and damages memory. It's too high a price to pay for a momentary warm calm feeling, which I know it does deliver!)

So what should you do?

To get the systems working normally, you have to change the brain's stress/relaxation systems, and keep them changed long enough for your neuronal pathways to re-establish new processes. Yes, your brain does re-build--but it takes time, and effort.

Here are the behavior changes that make a difference, per the research: exercise, eliciting the relaxation response (meditation), healthy thoughts and healthy relationships. And healthy sleep--but it takes a lot of those to get that!!

Exercise washes out the old stress biochemicals. Lots of research on protective and restorative function. Meditation puts in more healthy new biochemicals. Lots of research on that, too, and much in fibro. Healthy thoughts DO change biochemicals and physical processes, and keep them going in a healthy (or unhealthy) direction. (Healthy thoughts--positive, empowered, loving--books and books on this! ) If you have any PTSD symptoms, you have to change that process, too. EMDR is the best for that. (Yes, that is pretty categorical--we can talk about that another time! ;) Treat your depression--and no, not just with anti-depressants. Those help for a while--but only psychologically-focused therapy helps long-term. ONLY! Really. And not just being 'not depressed--but actively choosing to be happy, to have FUN!

I know real bad stuff put you here. You're not weak, it's not your fault, and you didn't just decide to have this. But it IS up to you to find the stuff that will get you out.

And you can.

You can read about these healthy behaviors, and should. And you can get most of it right here on Spark, if you read articles from all the areas! That balance, that depth of info, is what I like best about Spark.

But it can also help to see a health psychologist, or a positive psychology therapist, or a trauma specialist if that's needed too--lots of people have lots of info. and it can all help.

So I know this was fast--a 'down and dirty ' review of fibro. But it's also true, and my hope is that it is positive and empowering. Because you CAN change those processes! And all the changes will take you into happier as well as healthier living!

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Member Comments About This Blog Post
    I'm just finding this blog and want to thank you for sharing. I do deal with Fibromyalgia and agree with your recommendations. It is a daily battle to find what works and manage the symptoms but I have been able to make progress without drugs.
    3576 days ago
    Very informative. I have a dear friend that has this and is often in a lot of pain.
    3743 days ago
    Good job, Deb! Good information. The hard part, at this point in time, is mustering the energy to do those things. I'm working on it! Thanks
    3763 days ago
    Hi Deb,

    I don't suffer from fibro, luckily, but this is an incredibly sensible evaluation of its causes and how to deal with it! I'm going to forward this to a SparkFriend who suffers from it.

    Have you read any of John Sarno's work? If so, what do you think of him?

    Thanks for posting!

    3764 days ago
    Wow, where was this information 7-8 years ago! My mom was diagnosed with fibro at that time. Besides painkillers, there was not much else the doctors offered. I have seen articles since (over the last several years) that seem to indicate that progress is being made on this mysterious health issue (at least it still is to me). For 3 years my mother lived a very painful life, well...she passed away in '05 and the whole ordeal still puzzles us. I appreciate the info. that you've provided in this blog. It helps me understand what was going on with my mom. At the time, we all felt so helpless. I will be sharing this with members of my family today. Thanks Deb.
    3764 days ago

    Comment edited on: 5/31/2010 9:49:03 AM
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