Causes – Part II

More responses to yesterday’s question about what doctors have told us about possible causes for fibromyalgia have been coming in today: trauma and stress, lyme disease, multiple health issues, surgeries, cancer treatments, accidents, genetics, and more.  Quite a few mention a combination of factors.  These responses illustrate the biggest problem facing physicians and researchers who are studying fibromyalgia, namely diversity of experience.  After all, we are looking at physical, psychological, genetic, viral, bacterial, and other triggers. Triggers are not a cause for a condition like fibromyalgia ( like one of you very aptly pointed out).  No one knows what the actual cause is.

However, reading about your experiences and knowing my own experiences makes me wonder if there’s not one thing we all have in common: persistent pain.  I know that sounds obvious.  What I mean is, before any of us had fibromyalgia, we were all undergoing some sort of injury (physical or emotional) or had some sort of condition that caused lingering pain (some people mentioned arthritis or lupus, etc) or underwent some sort of surgery (hysterectomy seems pretty common when surgery can be pointed at as a trigger).  There have been quite a few recent studies where researchers have done imaging of the brains of fibro patient and healthy controls.  There are differences (see library or library by subject) in the structures of the brains of these two groups, and it has been theorized that persistent pain can actually reformat the brain, particularly in pain processing regions, reformatting which causes the imbalances of chemicals which ultimately makes the pain processing regions overreact (a very simplistic explanation).

Similarly, there is research that has shown that when children (who are still developing) are subjected to either physical or emotional trauma (newborns who undergo surgeries, children of neglect/abuse), their pain processing systems develop differently, and there is a strong possibility of them acquiring a chronic pain syndrome – with the proper trigger.

It’s a theory that can’t stand on its own.  After all, why don’t all people under similar circumstances develop fibromyalgia?  Genetics must play a role.  Unfortunately, I haven’t seen anything saying they can fix deformed pain processing systems in our brains. However, IF there is something to this theory and fibro and other chronic pain syndromes can be predicted, then it seems like they can be prevented.  It may be too late for me to ever feel any better, but I would love to know that another generation would be able to prevent ever developing fibro.

 

Causes

This morning on my usual bus ride to work, I threw a question out to a couple fibromyalgia support groups on Facebook:  Have you ever been told what caused your fibromyalgia? If so, what? For me, I was told mild arthritis in my back caused it.

Within just a few moments, I started getting responses.  Thank you all who responded.  I thought you may be interested in a bottom line of the responses that I received:

  1. Emotional trauma – thirteen
  2. Surgery – seven
  3. Injury – six
  4. Viral – three (Epstein-Barr Virus)
  5. Genetics – three
  6. Lyme disease – two (bacterial)
  7. Cancer – two
  8. Sjögren’s – one
  9. Grand mal seizures – one
  10. Post-drug abuse – one
  11. Temporomandibular joint disorder – one

Some of these were in combination, such as genetics and trauma.  Some had an overwhelming combination of factors.  A couple had no responses, having been told that some people just have it and no one knows why.  That’s actually the truth.  No one really does know why fibro develops in some people and not others.  But they’re looking.

I’ve been looking at research studies (see library) and can see a really positive shift in the way researchers and physicians regard fibromyalgia.  In the 70s, the focus was on psychology – what’s wrong with these people thinking there’s something wrong with them?  It’s rare that this kind of ugly attitude comes out anymore in medical literature.  The focus is now on the physiological causes for fibromyalgia.  It is no longer generally considered a throwaway diagnosis.  This is what gives me hope.  I don’t think there’s going to be a breakthrough with a magic cure, and I’m always very suspicious of claims that I can’t find corroborating research on.  However, knowing that there is an effort gives me hope, if not for me but for future generations.

 

Comorbidity

Comorbidity is a tricky thing.  Put simply, comorbidity is when a patient has more than one disease, syndrome, condition at the same time.  For people with fibromyalgia, comorbidity becomes a confounding factor.  Which comes first?  The fibromyalgia or the other thing?  Or does fibromyalgia develop when another condition is not properly managed?  If the other condition has a cure or a good way to manage it, does that help with fibromyalgia symptoms?  Will curing the other problem or problems also cure fibro? Where exactly is the boundary between fibro symptoms and the symptoms of other (possibly related) conditions?  So very many questions.

Setting aside another question I have toyed with but which I haven’t really looked into yet (are there certain specific comorbid conditions for fibro patients and if so, if you look at the origins of those conditions, do you find the origins of fibromyalgia?), I found an article by Rivera and Vallejo in Rheumatology, “Fibromyalgia Is Associated to Receiving Chronic Medications Beyond Appropriateness: A Cross-Sectional Study,” (see library) which looks at people with fibromyalgia plus comorbid conditions and how medications are prescribed.  There is a startling bottom line.

  1. People with fibromyalgia plus comorbid conditions receive a greater number of medications AND they are prescribed for a longer period of time.
  2. People without fibromyalgia but without comorbid conditions receive fewer medications for a shorter period of time.
  3. People who have fibromyalgia symptoms but have not been diagnosed with fibromyalgia and have comorbid conditions receive similar pharmaceutical care as people without fibromyalgia.

This is not an indication that doctors are just throwing pills at people with fibromyalgia, but it could be an indication that they are just flat out stumped and hope that by “fixing” other conditions they can give some relief to patients who are suffering.  It could also be an indication of the pressure that physicians may feel from the fibro patients to get relief for their pain.

The problem with meds is that they are like a give-and-take method for treating anything. Yes, there may be some relief for some conditions.  At the same time, they can cause other problems.  For example, I tried Lyrica for a short time because it is supposed to help both pain and depression.  The effect on my pain levels was minimal, as was relief for depression.  Without knowing it, I was living in a cloud.  I didn’t realize I wasn’t thinking clearly until I went off the Lyrica.  The pain levels went up more than I expected because I couldn’t even really judge its effect on pain because my mind was so muddled.  But as soon as I walked out of the fog and could think again, I could manage the pain better on my own.

It’s not just meds for fibro that are give-and-take.  I was recently on a course of antibiotics for a staph infection that gave me heartburn, a swollen and painful esophagus that made it difficult to swallow.  It felt like I wasn’t chewing, and the food was tearing me up as it went down.  Could I stop taking it?  Nope, but if it wasn’t a staph infection I probably would have – I’ve stubbornly stopped antibiotics that made me sicker than the condition I was being treated for.  But I only had to take this one for a week.  If I take a med for fibro, it’s going to be for an extended period of time.  I have to weigh those pros and cons carefully and make my own choice.

Aerobic Exercises – Slight to Moderate?

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!

To Drug or Not to Drug…

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.

 

 

Chronic Infection?

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.