Reporting On My Last Session For The Clinical Study On Fibromyalgia

It’s damp and chilly here in the Midwest.  That means I feel the pain in my bones today and the heating blanket will be my best friend.  My grandson is down for his nap so I thought I’d fill you in on what happened Wednesday at U of M where I’m taking part in a clinic study on Fibromyalgia.

The group I was put in is basically informational; talking about studies and answering questions about our personal problems with fibro.  This stuff is pretty clinical, so hang on.  Here’s a run down from this week’s group discussion…….

Genetically speaking they have found that first degree relatives (you, parents, children, siblings) have an 8 times greater chance of being diagnosed with FM/CFS.  They have found out several genes that influence stress and pain are more prevalent in FM/CFS patients than in those without.  An example is Catechol-O-Methyltransferase (COMT) which is an enzyme involved in how we perceive pain.  FM patients have a 25% increase compared to those without FM.  These genetic studies can be quite complicated since there are 18,000 genes in the body.  It’s kinda hard to know what ones are affected by what; it’s a lot of stuff to rule out.  If the gene damaged or is the brain not reading the genes code properly.  These medical journal publications tend to print the new and exciting finds, but unless those studies can be replicated repeatedly and consistently you can’t be 100% positive.  What happens then is that if another study is performed and they get different results you may never read about that in a journal because it isn’t new and exciting.

Environmental causes are also being investigated and have been found to play a consistent roll.  Over 50% of people with FM can tie the diagnosis back to an accident, illness, injury or extreme stress.  Even more; 20% of people who have a severe neck or back injury will later be diagnosed with FM.  So did these environmental things actually cause fibro or are we genetically predisposed to the condition and these environmental occurrence just bring out the illness to a full blown state?  They jury is out on this one still!

Testing for peripheral causes such as muscle damage, inflammation or damage in nerve tissues have been ruled out.  They have, however, seen a decrease in oxygen in the tissues but it’s hard to determine if that’s a cause or a symptom.  Does that cause the tired feeling in the muscles or is it caused by lack of exercise which patients tend to back away from because of the pain it will cause?  It can be quite a difficult call to make.

When you think of the two nervous systems in the body you can put them into two categories.  The peripheral system which is how the nerves transport pain signals outside of the brain and spinal cord and the central nervous system which is contained in the brain and the spinal column.  Evidence shows that the central nervous system responds differently in patients with FM.  Through functioning MRI’s they have found that when a FM patient is presented with pain a different part of their brain reacts than a patient without FM.  (I’m really glad I wasn’t part of that study and I’d like to know just how they caused pain in the patient!  I can imagine it was not a fun day for them!)  But this is one of the first actual diagnostic tests that is proving a difference in the brain functioning of a Fibro patient.

There are certain “gates” throughout the spinal cord.  This is where the pain signal is received at the spinal cord from, let’s say, your finger getting hurt.  The signal that pain is going on in the finger is sent up the spinal cord to the brain and the brain then send a signal back down the spinal cord to the “gate” and tells the gate to close or how open it should stay.  So if you just poked yourself a little, the brain tells the gate to go ahead and close because that little poke was no big deal.  Well, in fibro patients they are finding that those “gates” remain open; all the way.  This is making the central nervous system work overtime because the signals keep being sent up and down the spinal cord.  Eventually it becomes hard wired.

It has long been thought that FM patients had a lower level of endorphins in the system than a healthy patient.  You know, those are the little guys that are the feel good chemicals in your body.  Surprisingly, it’s the opposite.  They have found significantly higher levels of endorphins in FM patients.  Which means the brain is releasing the endorphins to counter act the pain, however the central nervous system isn’t reading the levels properly and allowing the endorphins to do their job.

Another thing I found interesting this week is that we have an ability in our bodies called DNIC.  Diffuse Noxious Inhibitory Control.  This is the pain pathway that tells what level a certain pain is in our body and can allow sensations at other parts of our body to diffuse the initial pain area.  Um, let me word this so it makes sense – a runner after a marathon will have pain in their legs, they have learned that you can pinch your upper lip so hard it hurts and the new pain in the upper lip helps to diffuse the pain in your legs.  Kinda spreads it around.  Well I bet you can’t see this next line coming – that system is not working efficiently or at all in patients with FM.  So don’t bother even trying next time your legs hurt – if you pinch your upper lip you’re just going to have another pain all together and your legs will still hurt just as much.

Have you ever heard of something called a pain wind-up?  Well if you’re a fibro patient you have problems with this too.  They took lab rats (real rodents, not the human kind of lab rat) and they repeatedly scratched at their tails.  Well what is supposed to happen is that their little rat brains are supposed to send a signal down to the tail and tell it, ok, this is gonna keep going so go ahead and shut the gates a little and ignore that scratch as a little irritation.  Well in fibro patients that scratch just continues to increase in the amount of pain perceived.  It keeps winding up.  Along with this is something called Substance P.  It works as a neurotransmitter in the brain and keeps the pain responses going.  Fibro patients are found to have 3 times as much as a healthy patient.

So let’s just sum up everything I heard Wednesday; in practical terms.  We all have a volume control in our little brains.  Our brain and spinal cord work to turn the volume up or down throughout our day.  Guess what!  If you’re a fibro patient your volume control is all the way up.  Some days it’s turned so far up that certain things that don’t cause pain in healthy people will cause pain in you; like lights, loud noise, smells, clothes touching the skin; anything that is a stimulus.

So after all that depressing news I left feeling pretty good.  I mean, there are still people out there that don’t believe FM is a real illness, disease or whatever you wanna call it – and they think it’s all in our heads – well, they’re right.  It is all in our heads; our brain and our spinal column.  All in all these findings are good.  It’s showing actual physical proof that can be detected through testing which is bringing us closer and closer to finding treatments that work.  And I find that an encouraging thing!

Stay Well! ~ Live Joyfully!

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7 thoughts on “Reporting On My Last Session For The Clinical Study On Fibromyalgia

  1. This was a well written article in layman’s terms. I enjoyed it. I’m also glad there are people out there doing studies on fibro. I am so tired of being told it’s not real. I hope all those doctors who have been so cruel to me will change their mind and stop saying hurtful things to people.

    • Thank you and thanks for reading! I’ve been very encouraged with these new studies, and yep, I have some doctors I’d like to send to these studies so they realize the reality and maybe learn some compassion! 🙂

  2. Very interesting read! So many theories out there, I’m glad they’re doing studies and building data. I have many clients suffering from this condition and what’d they seem to want most of all are answers.

    • Thanks! I know, it was exciting to here they are coming up with a few tests since they’ve only been able to diagnose according to symptoms for so long. Very encouraging! Thanks for reading!

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