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FM and ME/CFS – The Same, Related, or Different?
by Karen Lee Richards*
ImmuneSupport.com
06-23-2008
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The question as to whether fibromyalgia and ME/CFS ('chronic fatigue syndrome') are the same illness, closely related illnesses, or completely different illnesses has been debated by physicians and scientists for many years.
Some feel FM and ME/CFS are different facets of the same illness, while others believe they are distinct disorders that share several common symptoms. To further complicate the situation, 70 percent of people who have been diagnosed with one are also diagnosed with the other.
A new paradigm put forth several years ago by Muhammad B. Yunus, MD, suggests that FM and ME/CFS, along with a number of other conditions like irritable bowel syndrome, migraines, and multiple chemical sensitivities, are part of a larger group he terms “Central Sensitivity Syndromes.” The uniting factor that all of these illnesses have in common is central sensitization – an exaggerated response of the central nervous system to stimuli.
Overview of FM and ME/CFS
Before enumerating their similarities and differences, let’s look at a brief overview of FM and ME/CFS.
FM – FM (Fibromyalgia) is a malfunction of the central nervous system that causes disordered pain processing, and results in pain amplification. The primary symptoms of FM are: - Widespread chronic pain
- Extreme fatigue
- Sleep problems.
Other symptoms that may occur include: allergies, irritable bowel, irritable bladder, headaches, migraines, dizziness, numbness and tingling, sensitivity to cold or heat, depression, restless legs syndrome, chemical or environmental sensitivities, impaired balance or coordination, dry eyes and mouth, vision problems, or problems with memory, concentration and cognitive functioning.
ME/CFS – ME/CFS (Myalgic Encephalopathy or Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) is an illness characterized by prolonged and debilitating fatigue accompanied by a number of other symptoms, including: memory and concentration problems, recurrent sore throats, unrefreshing sleep, muscle and joint pain, and headaches.
Generally speaking, ME/CFS includes at least four of the following: - Post-exertional malaise lasting more than 24 hours
- Non-refreshing sleep
- Short-term memory or concentration problems
- Muscle pain
- Multi-joint pain without joint swelling or redness
- Headaches of a new type, pattern or severity
- Tender cervical or axillary lymph nodes
- Sore throat.
Over the years, there have been a number of definitions of ME/CFS. The best thus far seems to be the new Canadian Definition. You can download a full copy of the Canadian Definition here (http://www.cfids-cab.org/MESA/ccpccd.pdf).
Comparing and Contrasting
While the two illnesses have a number of similarities, they also have some distinct differences.
Similarities – In addition to some symptom similarities, FM and ME/CFS have several things in common: - Reduced cerebral blood flow to the cortex and midbrain
- HPA (hypothalamic pituitary axis) suppression
- Reduced levels of serotonin
- Non-restorative sleep
- Reduced levels of growth hormone
- Evidence of a genetic component.
Differences – Although there are many similarities, there are also significant differences. - FM is identified by 18 distinct tender points (designated points on the body that are painful when four kilograms of pressure are applied), while ME/CFS is distinguished by post-exertional malaise (deep fatigue and exhaustion following physical exertion, which lasts more than 24 hours).
- Substance P (a neurotransmitter that sends pain signals) is elevated in FM but not in ME/CFS.
- RNaseL (a cellular antiviral enzyme) is frequently elevated in chronic fatigue syndrome but not in fibromyalgia.
- ME/CFS is often triggered by an infectious or flu-like illness, while FM is usually triggered by a severe physical or emotional trauma (for example, injury, illness, surgery, prolonged stress).
Diagnosis - Getting an accurate diagnosis of either disorder can be difficult to say the least.
- People are rarely diagnosed with both at the same time or by the same doctor.
- Even though each illness has its own set of diagnostic criteria, sometimes the diagnosis you receive may depend more on which one your doctor is most familiar with.
- The fact that such a large percentage of patients have both FM and ME/CFS makes it especially difficult to distinguish between them.
Treatment - Treatment of both FM and ME/CFS is primarily aimed at relieving symptoms.
- To date two medications have received FDA approval for the treatment of FM.
- No medication has yet been approved for treating ME/CFS, but clinical trials are being conducted with the hope that at least one will be approved soon.
- It is becoming apparent that there are a number of subtypes of ME/CFS, which further complicates the search for effective treatments.
- It’s usually a matter of trial and error for patients with either illness to find an effective treatment plan.
- Most who have had some success in improving symptoms report using a combination of medication, alternative/complementary therapies and lifestyle changes.
____ * Karen Lee Richards is the Expert Patient, specializing in Fibromyalgia and Chronic Fatigue Syndrome, for HealthCentral's ChronicPainConnection (http://www.chronicpainconnection.com). For more information about Karen, who co-founded the National Fibromyalgia Association (NFA) with Lynne Matallana in 1997, see “Karen Lee Richards - Making a difference in the lives of those living with Fibromyalgia and Chronic Fatigue Syndrome." Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.
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DISCUSS THIS ARTICLE (2 existing comments)
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DIFFERENT diseases...living proof.
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Posted by: skennedy Jul 16, 2008 |
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I have strong opinions on this subject and think this article is great. My personal experience is positive proof to me that these are two distict illnesses, albeit with overlapping symptoms and often found together.
I was dx with FM 20 years ago. Amazingly (miraculously) I found a Dr. back then who actually knew about FM and how to properly dx it - via trigger point evaluation and history. She told me I could not continue my very physically strenuous job, and that there was nothing more to help me with. I had had FM abaout a year before Dx.
Then 2 years after being Dx with FM, while working long hours as a florist at Valentines Day, I came down with what I thought was a flu bug. Entirely NEW set of symptoms - nausea, vomitting, fever, sore throat, debilitating fatigue - worse than usual FM, and cognitive imparement greatly exacerbated. Pain also greatly increased. My "flu" never went away.
It was clear to me that I had had two very distict separate onsets. With FM I had chronic widespread pain, sleep disturbance, and some cognitive dysfunction, tiredness but still working full time, but NO OTHER flu like symptoms. The ME/CFS "flu" hit me suddenly and severely 3 years later.
No doubt in my mind about distict illnesses.
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What Karen said
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Posted by: Franck Jul 23, 2008 |
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My flu never went away.
its all there.
In a simple sentence.
I could stop here and let the pros do their work but i was diagnosed in 1988 with washingon d.cs top doctors looking at me like i was from another planet but 20 years have gone by and like Karen i have now both sets of both syndromes although the initial CFS onset signs dissapear(and i know she will know that too), it is now an unbearable pain, insomnias, etc..., and socially, loss of everything, relationships, work, sports, activities, and Lyrica is an effort yes but were not there yet...why is our bodies still fighting a war that happened 20 years ago???
But once again, to all and to all docs and researchers focus on Karen's sentence: MY FLU NEVER WENT AWAY.
Thank you and blessings to all.
franck.
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Fybromyalgia
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Posted by: Murtaghl Jul 16, 2008 |
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Hi, my name is Lucy. A number of months ago i was diagnosed with fybromyalgia and I am struggling along. Does this get any better? I would like to know what are the 2 medications received FDA approval for the treatment of fybromyalgia. Does anybody know if these might help? I would be so grateful if something would. Thankyou.
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fibromyalgia reply to lucy
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Posted by: wattz_dad Jul 16, 2008 |
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Hi Lucy,
My name is Dan, I'm 52 and was diagnosed in 2003. In my case, FM has gotten worse.
One of the two drugs that have FDA approval for the treatment of fybromyalgia is Lyrica (pregabalin). It was developed as a medication for nerve pain and pain associated with shingles. Lyrica's predecessor was Neurontin (gabapentin) was also developed as a nerve pain drug. I have used both for the treatment of the symptoms of fybro.
The other drug, I believe, is Cymbalta (duloxetine) an antidepressant. I had heard it was being reviewed by the FDA as a possible treatment for FM, but not that it had been approved for anything other than treatment of (GAD) generalized anxiety disorder, and MDD major depressive disorder. Lyrica did NOT help me.
I am currently taking cymbalta as well and another antidepressent
I also take methadone, tizanidine, skelaxin, baclofen, tramadol, and provigil.
I hope you can manage your fm
Dan
b
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To Lucy
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Posted by: skennedy Jul 16, 2008 |
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Hi Lucy,
I was diagnosed with FM 20 years ago. I was blessed to find a doctor who actually knew what it was back then, and how to properly dx it - via triggerpoint evaluation and history. I was working in a steel fabrication shop at the time - heavy and repititious. Back then she said basically "This is what you have. We don't know much about it. There is nothing to help you. Quit your job and find something less physically demanding". 2 years later I was hit with ME/CFS as well - entirely separate onset. Fortunately they do know a little more now.
As for your questions:
Does this get better? - It can, or it may not. I personally feel that the sooner a person accepts their diagnoses, educates their loved ones, and takes whatever steps they can to treat and learn to live with FM the greater chance they have of improving. I did not do these things well and really wish that I had - there simply was no knowledge back then. Getting the people around you to "get it" is critical. Even have them talk to your Dr. if need be (especially spouse). And pace yourself gently without guilt. ASK for help with physical tasks when you should. DO try to stay fit with some regular exercise, but not too much and don't expect yourself to "build up" to more and more like other people would. Feel good about yourself when you do whatever exercise you can. And of course eat healthy. I believe these things are your best bet at improvement - along with faith in God's goodness and the practice of gratefulness for any and all good things you DO have in life.
Meds? - Lyrica (Pregabalin) is the one I can think of. Not sure about the 2nd one - maybe Valtrex?? Lyrica may be promising and I too, would like to try it. Hve never tried Valtrex - can't even think right now what it is.
Good luck, and God Bless You, Lucy.
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Approved drugs
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Posted by: grannycfs Jul 18, 2008 |
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I think the drugs are Cymbalta and Lyrica. But check out the www.fmaware.org site for fibromyalgia and you find lots of good information there about the drugs I'm sure.
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Lucy
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Posted by: sks12202 Jul 16, 2008 |
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Sorry to hear about your fybromyalgia. The only meds I am aware of for Fybro is Lyrica, however the side effects to me are not worth it!!! Swelling, weight gain,ect. Also yoy have to take this and get it in your system to work and its very costly!
I have was diagnosed in 1993, have suffered since i was 10 yrs old. Hospitalized for a week at 10 all for Dr's to say (growing pains) My parents knew something was wrong but didn't go any futher after the growing pains issue. Into Adult hood and Now I still suffer from the exact same pain, finally in 1993 was diagnosed but told whatever I had as a child was "not the same as the fibro" I left and Never went back!! I was also told that this would go into remission after I finished my "child bearing yrs" well I'm 41 and regretfully have to say nothings changed. The best thing to take is something with ibprofen in it. I suffer for years and was ashamed to tell family Dr about my condition because when org told in 93 folks laughed and said Ohhh, that fybromyalgia is what Dr's say you have when they cant find anything wrong with you. Finally about 3 yrs ago I finally got absoultey TIRED of all the pain and have suffered LONG enough, My Dr put me on Vicoprofen-ONLY 30 a month and Darvocet. He does NOT give me enough to abuse, I am very grateful. I take 1 vicoprofen a day. My life changed for the better, I feel better and am able to do more. Now after 3 yrs, and Thats ALL I take, the Vicoprofen doesn't work as well but because I'n afraid if I tell him, he'll either think I'm a drug seeker or take them away and give me nothing! So,, Good luck. Try and Find a good DR. and hopefully, if your just being diagonsed andits 2008 now, people will be more educated about it and Help you! But otc-meds will Not work.Advil is the only thing, but after you take it for yrs it hurts your stomach.
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2 drugs for Fibromyalgia
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Posted by: reborn61 Jul 16, 2008 |
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Lucy, the two drugs currently approved for Fibromyalgia is Lyrica and Cymbalta. I cannot comment on their effectiveness as I have not taken Lyrica and just started on Cymbalta which has helped me cope mentally and has relieved the pain somewhat. I have had it 15+ years and struggle daily. Hopefully someone will find a cause & cure soon.
Hoping & Praying,
Carla
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2 drugs
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Posted by: sandy10m Jul 16, 2008 |
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The drugs currently approved specifically to treat FM are Cymbalta and Lyrica. Of course there is the entire repertoire of drugs for pain, but for most FM sufferers, they only put a dent in the pain and don't really get rid of it. Read about the other two drugs, which act further up the pain chain to give most FM people good relief.
In terms of what to do as a newly diagnosed person, I found it very helpful to read everything I could from people who have been through it longer than I had. There are several books written by actual patients where you can learn a lot. I am personally writing my own book about my experiences in the hopes that it helps others, but my symptoms are mainly CMPS (chronic myofascial pain syndrome) which is often confused with FM. This article didn't even touch upon that subject. CMPS occurs when the body makes the wrong type of collagen to repair damaged muscles, which is sticky and stiff, and when you move around it causes pain. Lots of physical therapy and INTENSE massage was needed to rip that stuff apart so the right collagen could move in.
Anyway, good luck to you! Remember that you are not alone!
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The best you can do...
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Posted by: suemorr Jul 16, 2008 |
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is to be an informed patient. Do research on this new problem in your life. The two drugs are Lyrica and Cymbalta. They naturally have side effects, and you and your doctor would have to decide if the benefits outweigh the risks. I was diagnosed about 3 1/2 years ago, tho it seems like I've had it forever. My pain level on a scale of 1-10 is pretty consistent with a 4 these days, with flares to a 7 or 8. The pain I can take lately without a strong drug, but the fatigue and fibro fog are the worst for me. FM can get better if you're lucky. Since research is leaning toward brain chemistry and sensitivity, it varies in severity from person to person. You can improve symptoms by keeping your stress levels down and improving your sleep.
Welcome to this club to which no one wants to be a member. ;-) The adjustment takes time, I've learned, between what I once was and the person I am now. Best of luck.
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