A friend of mine sent an article a couple weeks back: Efficacy of different types of aerobic exercise in fibromyalgia syndrome: A systematic review and meta-analysis of randomised controlled trials, Häuser et al (see library tonight).  As always, the article is actually more interesting than its title…  Since this whole blog project started because of the remarkable effect extreme exercise had on my fibro symptoms, it is always interesting to find studies that have looked at different types of exercise and the effect on fibro symptoms.  Meta-analyses are nice because they look at a large group of studies and sum up the results.  This article gives a nice summary:

1. Water-based exercises are not necessarily superior to land-based exercises
2. “Slight-to-moderate” aerobic exercises are effective
3. “Low intensity” aerobic exercises are NOT effective
4. 2 to 3 times a week exercises for at least 4 to 6 weeks are necessary before reduction of symptoms
5. Adding stretching or strengthening is NOT more effective than simple aerobic exercises

This corresponds pretty much to what I have been experiencing with exercise, with the exception of the extreme exercises I was doing at Crossfit.  I have not found a study that looks at extreme exercise for fibromyalgia.  In my experience, extreme exercise, which raises your heart rate to insanity is actually the most effective.  However, if you add weights to the regimen, the effectiveness drops almost immediately.  In other words, keep moving, breathing, and don’t stop to strengthen specific muscles.  Also the minute you stop, you lose the effectiveness.  It is not a cure – it is palliative.  I have never had a good response to slight or low aerobic exercise.  They usually make me hurt more and fatigue me worse than submersing myself in extreme exercise.  I would have thought water-based exercises were better, but I haven’t had a chance to test it yet.  Until the infection on my chin heals, I’m not allowed in a public pool.  Yep, infectious… But February will be the test for water.  I’m looking forward to it.

Thanks for the article!

I love seeing people from all over the world taking a look at this blog site.  Thank you, hello, and welcome!

One day, I’m going to visit you, but in the meantime, welcome!

I recently joined a couple fibromyalgia support groups on Facebook – hi everybody, just in case you’re reading.  Reading about their experiences has really brought to home how different everyone’s experiences with fibromyalgia are.  Symptoms and severity are wide-ranging, as is the effect on the quality of our lives.  One common denominator I see in the posts, however, is the question about drugs.  Which drugs have worked, which supplements to take?  It’s the natural question.  We have been taught that there should be a pill to make it all better.  With fibromyalgia, however, that may not be the case.

In particular, there are studies indicating that opioids not only are ineffective, they may have a detrimental affect on people with fibromyalgia (see Goldenberg in the library). There are several drugs that are being advertised as beneficial for patients with fibromyalgia, but the evidence (from non-biased research studies) is very minimal that they have a true benefit.  The only drug I have read about that may be effective in actually treating fibro is pregabalin, and that is because, theoretically, it actually rebuilds bits of the brain that have been affected by chronic pain (see library, Klein et al, and various studies about the effect of chronic pain on the brain).  While antidepressant use is likely a necessity for people with chronic pain, I can’t find any evidence that indicates that they do more than help with depression and possibly suppress a little superficial pain.

At the same time, there is growing evidence that genetics plays a fairly large role in fibro (see library by subject – Genetics).  With genetics playing a role, there is a strong possibility that people with fibro may react differently to drugs than other people.  I’ve discussed before that I had to undergo genetic testing to see why I was unable to take so many antidepressants.  Three of the four metabolic channels that were tested were determined to be defective, one completely unusable.  This not only explained my problems with drugs (I’m allergic to several antibiotics, as well, including penicillin – case in point, major heartburn with the antibiotic I’m on right now), but also my problems with caffeine and nicotine.  I have wondered, but not have been able to find studies to answer the question, if people with fibro have similar metabolic deficiencies and whether these deficiencies are caused by chronic pain or if they are the cause of chronic pain.

One drug, Cymbalta, has really been pushed as a great drug for people with fibro because it is supposed to help with pain and depression both.  I went on it for about 3 months, until my insurance changed and I just couldn’t pay for it.  I was amazed when I went off the Cymbalta.  There was some relief of pain while taking it, possibly more than I realized, but the real effect of Cymbalta was to suppress my brain.  I didn’t realize it, but I was half asleep the entire time I was taking it, like I was sleeping under a heavy blanket.  When I stopped taking it, my brain woke up, and it was like seeing daylight after a long sleep, like breathing again after being stuffed up by a cold.  My creative juices suddenly started to flow again and I felt so free.

It’s a balancing act, like everything about fibromyalgia, and it’s important to make choices, sometimes really hard choices.  My only suggestion is to look at some of the studies about drugs and fibro before really putting your hopes on a magic pill to return your quality of life.

There is fibromyalgia and there is CFIDS.  They aren’t the same thing.  Fibromyalgia is chronic pain.  CFIDS is a chronic fatigue immunodeficiency syndrome.  So chronic pain, chronic fatigue, chronic infections.  People with CFIDS may not have fibromyalgia, but people with fibromyalgia will likely have CFIDS.  While there is a lot in the literature about chronic pain and chronic fatigue, there isn’t a lot about chronic infections for people with fibromyalgia, at least I haven’t found much except for researchers looking at the possibility of infection as being as cause of fibromyalgia.  I’m interested in chronic infection as a consequence of fibromyalgia.

As I write this I have an “outbreak” on my chin.  It has happened before, a bit over a year ago.  A large sore on my chin.  I just got the results of the culture and know that it is a staph infection.  Antibiotic pills (which I don’t take well and usually make me sick) and antibiotic cream – I’ll keep it covered with an unsightly band-aide and in a couple weeks I’ll be left with a scar on my chin.  Another one.  Oh well.  I’m not a model and don’t have any inspirations, but this is just another round of infection that has hit me this fall.  I’ve had two upper respiratory infections, bronchitis, since October.  I had a rash of bloody noses for a couple weeks, the source of which is a small bump inside my nose, probably another infection, but it’s so small the doctors don’t really have a grasp on it.  This, like my chin, is a recurring infection.

Scratches and bruises take a long time to heal even when they don’t get infected.  I don’t spend a good deal of time avoiding injury, but I should.  Hangnails get infected.  Basic acne ends up as oil wells in my skin and regularly get infected.

Despite the insistence by doctors that the benefit of vitamin C is a myth, I have had a great deal of success using vitamin C to fight infection, particularly bladder infections.  Since I can’t take a lot of antibiotics, including meds for bladder infections, as soon as I suspect the onset of an infection, a series of mega-doses often stops infection in its tracks.  Regular doses of vitamin C usually helps me fight back the yearly bronchitis attacks I had for many years.  The last two years has been particularly bad, however, with two attacks per year.  Hopefully things are settling down now and my chin will heal and my lungs won’t fight back for awhile.  In the meantime, I’d like to figure out the underlying connection between fibro and infection as its consequence.

Happy to have you join in!

Nice to see you!

Last week I went on vacation.  It was a great time.  For the first time in years I went on a vacation with someone, my niece, so I wasn’t wandering around alone.  It was my first tropical island paradise vacation.  I snorkeled for the first time, dove in a submarine and saw a shipwreck, rode a catamaran, bobbed around on ocean waves while the sun set.  It was beautiful and peaceful.  Of course the journey took 20 hours there and 20 hours back, what with 10 hour layovers in the Miami airport. But in between those travel days was lounging on a white sand beach, bobbing in ocean waves while the sun set, peace and quiet.

Today was my first day back at work.  I didn’t make it.  Flat on my back…  So what’s going on.  General fibro symptoms are flaring a bit just from exhaustion.  There were problems with swollen feet and legs on the journey, but that has gone down, leaving just a general ache.  The joints in my hands are tight and sore.  My back and neck are aching.  No problems there, really, nothing I’m not used to.  The problem is on my face.  A little over a year ago, a sore broke out on my chin and kept growing.  The doctors at the time declared it a Saint Marys Hospital bug I had picked up (where I used to work), probably staph, strep, or MERSA.  At the time, the glands in my neck swelled up trying to fight off the problem.  It has returned.  Infection – I’m infectious.  They’re doing a culture to see what I’m actually dealing with, but it’s likely staph, strep, or MERSA or impetigo.  Lovely.  At the same time, I have a headache, the kind that makes the eyes burn, and noise/light hurts.  Of course, I fell asleep without my CPAP on, and that increases headaches and neck pain, causes throat pain, probably from snoring like a maniac.

Wonderful vacation, and I’m willing to take the punishment my body doles out.  I’ll be to work tomorrow.  I made it to the doctor this morning and got the antibiotics I need to fight this infection.  I’m still exhausted, but I’ll be there.  The only thing I can’t face is not doing whatever I need or want to do because of the pain and fatigue.  Bullheadedness is a necessity with fibromyalgia.

Upcoming search for information on the immune system, fighting infection, and fibromyalgia – the connection.

Just a quick note on the outside chance that anyone is reading this.  I’ll be ON VACATION next week.  My first tropical vacation, and I’m hoping to not think about anything beyond where to go, what to eat and drink, and whether I need more sunscreen.  Have a wonderful holiday week – Merry Christmas and a very Happy New Year!

See you next year!

There are no limits to the power of the mind.  For chronic pain syndromes like fibromyalgia, the power of the mind can, unfortunately, be a detriment to the progress of finding a cure for or prevention of chronic pain.  Some doctors still regard fibromyalgia or other chronic pain conditions as psychological or psychosomatic (in the sense that people with chronic pain essentially bring it on themselves).  Yes, the power of the mind can be great enough to bring on pain symptoms.  Furthermore, the power of the mind can turn those pain symptoms into chronic symptoms.  In addition, the mind can be the catalyst for that vicious cycle – the mind triggers pain, the mind prolongs that pain into a chronic condition, the mind stops the body from moving, not moving increases the pain symptoms, and so on.  That is all possible.

The mind can also do the opposite.  Patients with chronic pain can train their minds to relieve pain symptoms.  Cognitive behavioral therapy, meditation, any calming techniques, stress reduction, etc, can help relieve symptoms.  It can go either way.

It’s a question that has always irked me: Do I hurt because I’ve talked myself into it? Because I have been conditioned to feel this way?  Somehow the question feels like an accusation, as if I alone am responsible for being in pain, for being a burden on the healthcare system.  I can’t say for certain it’s nonsense, but there is enough evidence for physiological anomalies and degeneration in people with chronic pain to look past the purely psychological.

Finally, if it is true that chronic pain is an essentially psychological disorder (and it’s rare to hear that anymore), then the next question in my mind is: Can fibromyalgia be cured by happiness?  It sounds odd, but stress and depression are correlated to chronic pain.  Why isn’t happiness connected to wellness?  In all fairness, it should be, but I haven’t found a study telling people with fibromyalgia to simply… get happy.

As the guinea pig in this little research project, I can definitively say happiness does not eliminate chronic pain.  Unfortunately.  Happiness is a distractor, but not a cure.  I’m happy.  I’ve found a wonderful person I want to spend time with, who wants to spend time with me.  Sixteen years after divorce #2, three years of online dating, and approximately 43 first dates later, and happy.  For once.  But the pain marches on….