Disease Severity Markers?
Wouldn’t it be wonderful if doctors could order a blood test to see how well a therapy is doing, or document that a drug is not working? Better yet, you could have objective proof of your pain severity instead of your lab work making you look perfectly fine. Several blood markers have been identified in fibromyalgia patients, and the results are being refined by Alan Light, Ph.D., of the University of Utah, in hopes that they will produce a diagnostic blood test. Light also suspects he will be able to identify many subgroups of fibromyalgia.
The work by Light is absolutely exciting, but a diagnostic blood test could take years. In the meantime, Dennis Ang, M.D., and his team at Indiana University, are looking at the potential for a quick, rather simple lab test for objectively measuring disease severity. In particular, his goal is to document the pain levels in people with fibromyalgia.*
Part of the difficulty with developing blood markers for fibro is that most of the action is occurring within the nervous system and the blood often does not reflect these changes. So Ang is looking for surrogate markers in the blood that might tell doctors how the central nervous system is working in people with fibromyalgia.
Plenty of research evidence shows that painful inputs from all over your body and multiple muscles place your central nervous system on high alert. This bombardment of inputs leads to a system where the concentration of pain transmitting chemicals builds up, such as substance P (SP) and corticotrophin-releasing hormone (CRH). In fact, both SP and CRH are elevated in the spinal fluid of people with fibromyalgia. As a result, the nervous system becomes sensitized to future painful inputs. Instead of toning down the pain signals, the nervous system magnifies them (e.g., making you feel worse, not better).
So why don’t researchers and treating physicians just order a blood test to measure your levels of SP and CRH? While these chemicals are at least double what they should be in the spinal fluid of people with fibromyalgia, their values in the blood are normal. This is the hurdle that researchers have been stumbling over because many factors are clearly abnormal in the nervous system in people with fibro. Yet, spinal fluid measurements are only done in research studies and such techniques are simply not available for treating physicians.
Ang’s team is testing a method to take a peak at what is happening inside the nervous system by testing two substances in the blood that may be caused by elevations in SP and CRH (both elevated in fibromyalgia). A simple diagram of how this new test might work is shown below. Basically, elevated SP and CRH causes an activation of mast cells that are located all over your body, leading to enhanced release into the blood of two immune system chemicals or chemokines: IL-8 and MCP-1.
Exactly what IL-8 and MCP-1 do in the body is not nearly as important as just knowing that previous research has shown them to be elevated in the blood of fibromyalgia patients. If these two substances correspond to how well you are doing, then their concentration should decrease with improvements in pain ratings. On the other hand, if pain scores get worse, then their levels ought to increase. At least, this is how markers for measuring your disease severity should work.
One way to check if these two markers are able to pick up changes in fibro pain is to measure them before and after a treatment trial (i.e., the longitudinal measurement of treatment effects over time). Ang put a small group of fibro patients through a six-week course in pain and stress management while not changing any medications used.
Improvements in fibro pain corresponded to reductions in both IL-8 and MCP-1. The results are only preliminary, but offer hope that objective disease severity markers can be developed for fibromyalgia.
“While our study does not implicate a cause-and-effect relationship, the longitudinal associations of fibromyalgia pain severity with blood concentration of IL-8 and MCP-1 raise the question that these two chemokines may be involved in the pathogenesis of fibromyalgia,” writes Ang. “If our findings are replicated in a larger group of patients, IL-8 and MCP-1 may facilitate the prediction of prognosis and monitoring of treatment response in the future.”
* Ang DC, et al. Pain Med [epub ahead of print] June 30, 2011.
I appreciated your article on disease severity. I’ve had fibro 25 years and need hope. I live on pills, and most do not work. It’s been hard on my husband as well. Thank you very much .
Gwendolyn, You’ve had fibro for such a long time…finally getting diagnosed is hard enough, but then we are always trying to feel better. For me Cymbalta helped a lot w/ the pain factor, but going Gluten free for the past 6 weeks has changed my life TREMENDOUSLY! Amazed at the benefits. I feel Drs. are very reserved w/ pushing this helpful solution. Give it a try
well….. been up since 4am with chronic muscle spasms and went onto fibro website and found these links.. I don’t feel as lonely now. I was diagnosed with fibro 5years ago and am still fighting my doctors and consultants for real help.|I like many of you have cocooned myself to my home, a recluse whom used to be popular and had my own business.
Excellent research hope more ones and fine a cure for this conditions that’s jelling me.
I think this research is great. But none of my doctors read this information to educate themselves on how to treat me better. I wish there were doctors that specialize in Fibro or cared enough to educate themselves to treat thier patients better. Then this research would help your average person not just the test groups. Maybe doctors should be required to have continuing education or loose thier license.
Hi Laura! The best Dr. that I’ve found who treats my fibro is my RA Dr. Rheumatoid Arthritis. I’ve been diagnosed for 17 years now. I know that I have both Fibro and RA. Ask your reg. Dr. for a referral to a good RA. If you don’t trust him, how about checking in WEB MD. for Fibro and see what their recommendations are? Best Wishes, Carolyn
ps… I take Cymbalta! Really helps a great deal! My family doctor DOES participate in continuing education. I’m so grateful for that.
I am a Family Physician who also has Fibromyalgia. I understand what you are all going through as I deal with it every day of my life. I have had to give up practicing medicine because I simply can’t do it any more. It’s true that most MD’s don’t know anything about it and Rheumatologists (RA’s) are the most likely to be able to help.
My best advice is to keep a Daily Record of your symptoms, then rate each symptom on a scale of one to ten. Divide the total by the number of symptoms you had that day. Tnsfr that number to a Graph using the totals you got each day of the Daily Record. Draw a line from day to day on your graph. The Doctor will see exactly what U R facing & be more likely to help U.
Laura in respone to you question about doctors being required to take continuing education after they are in medical practice I can assure you that they are required to fulfill so many hours every year of what is called “Continuing Medical Education” (or CME”S). These CME’s also require that the doctor’s take tests after having read and reviewed any new material presented. The info is online.
This research does sound great. It would be nice to have a gauge to tell what one is going through. Maybe this could be helpful in the future with disability insurance and Social Security. Because God knows how difficult it is to get it, and so do I because I tried. It takes years to get, if you can get it and not able to do a thing. I find just because not being that bad off as some, does not make this disease any easier. Sometimes I feel like I am always up against something and expected to perform as if I had nothing at all. I am battling with severe knots because I want to be physically fit, but finding it very difficult to do want I want or what is necessary to be athletic. I am so disgusted and fed up today because I realized again how Fibromyalgia and Chronic Fatigue are in my way again. Always rearing its ugly head into all areas of my life, and then we have many people telling us it is all in our heads, and to be positive. I am sorry, but I cannot be positive when something is robbing my life and stealing my joy no matter how hard I try, ( AND I TRY REALLY HARD)and I know I must speak for many suffers out there who suffer from the complications of this horrible disease. My response to being positive when I am having a hard time (especially with non-stop pain) is you be positive , but deal with what I am dealing with. I would absolutely love a test that would settle all these arguments once and for all for all of us. I am so tired of defending how I feel, it isn’t funny. All I can say is thank God for people like this that look for answers and know how to. God bless them.
Augustine & all: This is a debilitating disease and can get very, very discouraging!! I have gone from being able to do the things I love to having to pace myself way, way down.. I do take Cymbalta, Nuerotin, and then something to try to get a goods night rest (not doing well with that so far).
You need a strong support group!! Get involved in a church maybe? Take breaks-rest!!
I do get it Augustine! And Thank God that we can share our trial and tribulations of all! God is with us and helps us to Overcome so many things! Unfortunately, although I have been deeply praying and crying out…. there are still no Answers! My pain and my desire are 2 different things! Desire is so strong to do! Fibro, CFS, Raynaun’s & Hashimoto’s all destroy function! But I know…
I’ve had fibromyalgia for over 40 years and have found no doctors who keep themselves abreast of what is going on with research. Where can you go?
I sure hope that something can soon be found in the way of “testing” that shows what goes on in the body of FMS suffers and proves that it really is real. When it cannot be found in a test tube, on a slide, in an Xray or other type routine testing, most people, even a lot of doctors, don’t think it is real. I got tired of hearing “you look so”, “well you don’t look like there is anything wrong with you” and “you look like the picture of health” that I completely cut myself off from my friends. I know that was not good but you can only pretend so much for so long when you are in constant pain and your energy level is -0-. I would not wish this condition on anyone but if every one could just walk a few days in the shoes of a FMS sufferer then attitudes toward this life-altering condition would be very different. When I was diagnoised ten years ago many people, including myself, had never heard of FMS. Thank heaven for those who are studying and trying to find real answere and lasting treatment for all of us who already know just how very real it is and how it changes every aspect of our lives.
When I read your comment I said to myself That’s Me…I no longer have friends or a social life. It’s just not worth the energy and misery after a day, evening or night of being with people. I have had friends, coworkers and family say very hurtful things. Go for a walk go out more your just down you don’t look sick or in pain. Why are you on disability? Why aren’t you in a wheelchair? I feel your pain and I am walking in your shoes beside you.
Thank you and gentle hugs to you
Dianne and Diana I can only agree with all you have said. It is very difficult to have a social life if you cannot plan ahead even hour to hour let alone days/weeks because u truly don’t know. Family struggle to understand, mine always want to look on the bright side and have not read one bit of information I send them. What killed me is on my last blood test my PCP said I was a very healthy girl when my pain levels where 20 out of 10 and my energy 10 below zero. Obviously these are specialized tests.
I print out articles like this one and any others I come across and take them with me to the doctor. My Dr and PA’s are always very interested and obliging to try whatever I bring in.
Continued from last msg- Also arm yourself with the most current scientific studies. Unfortunately, it is up to the patient to educate the Doctor. You could also sign your Dr. up to receive issues of Fibromyalgia Network magazine. Then he will have no excuse! Good luck!
I’m 49 years old, and was dx when I was 24 yrs old. But, I believe it started in High School, I needed to soak in a really hot tub in order to sleep. I also had sxs RLS by then too. I pray for the day they can do a test to dx, and determine the severity. I’m at an all time low with my disease, and now after finding your website I wonder what my Dr. reads to keep up on Fibro/Chronic fatigue.
I agree Carol!! My doc is also an RA & he has been the most supportive doctor or specialist I have seen. I moved 8 hrs away & travel to see him which has its price. I’ve had fibro for 15 yrs & have been cocooned to my home. Patientslikeme.com is a great way to chart progress & to meet others with fibro. God bless ppl who care enough to do this research & the ppl who donate funding!
I like so many of you know all to well the reality of the pain and suffering associated with fibromyalgia. I have been dealing with fibro for over twenty years since I finally received a definitive diagnosis from my rheumatologist along with a whole laundry-list of other autoimmune diseases–many of which overlap with fibro and make it that much more difficult to differentiate. God Bless You!
I truly know how all of you feel. I have been a Fibro/Chronic Fatigue patient for 12 years now. I know all your pain. I suffer with pain and muscle spasms almost every night. I have to sleep with a electric blanket every night to try to ease my pain. I also have to get up during the night and soak in a hot bath to relieve the pain. It is a horrible disease. Someone needs to help us out. God bless
I can especially relate to Augustine who mentions how hard she tries, I literally do my housework, cooking, or gardening until i drop and have to be lead to the couch to crash…. and quite often I have to hang my head to eat, and when bathing I have to close my eyes to conserve energy.
Everything is done with a struggle, every day. And people think yu are making it all up since you look good…
I felt somewhat better reading everyone’s comments. I’m so sick of being in pain. I’m sure my family is sick of hearing me complain. I pray for better help everyday. I feel useless. I want to do this and that, but I can’t. And until others know this pain, they have no idea how we suffer!
This research looks very promising. I hope it’s not to long before we can be tested. The rheumatologist that dx’d me does not want to be involved with treatment. He said to cont. to see my Pain Management doc so that I can exercise more. I’m greatful she is very good. I’ve been told I’ve had this for the last 20yrs. but as a child I always had strange aches and pains that no one could figure…
I know what you mean about the isolation. It’s so hard to make plans because you don’t know how your going to feel from 1hr to the next. My girlfriends do understand and they always check in with me just before we’re to go out. Hubby too is use to it. I’m lucky for his support even in the first 3yrs of my illness when no one knew what was going on.
I have fibro/chronic fatigue, secondary to Fifths Disease..have IBS, migraines, ulcers, Degenerative Disc Disease, buldging discs..which alone causes tremendous pain! chronic muscle spasms…joint pain, memory loss, ulcers, and more…i too, like many others cannot work. I have filed for disability only to be denied. I agree that Dr’s Do NOT know how crippling this disease can be.
I was diagnosed with FM 8yrs ago. At first it was almost impossible to work; I would work one day and be in bed the next. I went to the FM/CFS Clinic and they helped me slowly get back to work FT. It was expensive, but it saved my job. Then I tried Lyrica, it was amazing. I still have pain but it is now more manageable with fewer flares that keep me home from work. I have more of my life back now!