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Adrienne Dellwo

Central Sensitivity Syndrome: Umbrella Term for Fibromyalgia, Chronic Fatigue Syndrome

By January 16, 2013

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Have you heard the term central sensitivity syndrome (CSS)? It's a good one to know - researchers are using it more and more as an umbrella term for fibromyalgia, chronic fatigue syndrome and several other related illnesses.

These conditions have been called a lot of things, ranging from "not real" to "functional somatic syndromes" to "neuroendocrineimmune disease." However, as researchers learn more about them, some are coming to the conclusion that CSS fits best because it's based on their common underlying physiology - central sensitization. That's what makes us hyper-sensitive to pain, sensory input, and, well, the world.

See what CSS means and which illnesses it covers:

Why does an umbrella term matter? A couple of reasons. First, it can separate us from what we aren't, such as psychological or some vague category like "poorly understood conditions." Second, it could allow for research on multiple conditions at once. A well-defined classification would mean researchers could delve further into the underlying problems and, possibly, find treatments that go right to the heart of them. For those of us who have 4 or 5, wouldn't one really great treatment for all of them be amazing?

Look for more information on the individual CCS's throughout the month.

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Comments
January 16, 2013 at 10:20 am
(1) KAL says:

Adrienne makes some good points regarding the use of an umbrella term. But here are some other points to consider:

Although many distinct nosological conditions may present with similar symptoms, they may require radically different management for controlling the same phenotypical symptoms, in terms of diagnosis, therapeutic and general care. This is the main purpose of differential diagnosis which is a very clear axiom in medicine.

Or as Dr. Benjamin Natelson says, “All of the work in my group is based on the understanding that any clinical syndrome is comprised of subgroups of patients each with its own pathophysiological cause for the same syndromic presentation.”

It’s rather like all arthritis is not the same even though it falls under one overarching heading – different causes, different treatments. For example osteoarthritis and rheumatoid arthritis are two very different diseases. Osteoarthritis is a condition primarily of the cartilage of the joint, with reactive changes in the bone and the soft tissues. Whereas rheumatoid arthritis is a primarily inflammatory autoimmune disease of the soft tissues around the joint, but they are both called arthritis because they have some things in common.

January 16, 2013 at 1:58 pm
(2) lolly mcdermott says:

CFS should not be lumped together with FM. CFS is characterized by immune dysfunction, and chronic viral and bacterial infections are both quantifiable and treatable. All of the the GET, CBT and antidepressants in the world will not treat chronic viral and bacterial infections, because they are not due to “false illness beliefs”, deconditioning or depression. It is unethical to put disparate illnesses under the same “umbrella”, because it prevents patients from getting the appropriate care.

January 16, 2013 at 2:48 pm
(3) Tony Mach says:

If you look at the studies of Kathleen and Alan Light, if you look what Christopher Snell and Staci Stevens are finding out, then you will see that CFS (and possibly FM) are not due to some central sensitization process, but due to a peripheral pathology. Taken together, the work by Snell and by the Lights indicates that fatigue and pain are increased at the level of the muscle, that the nerves there are sensing more fatigue and pain.

The problem lies not in the brain, it lies in the muscle.

(And no, it is *not* deconditioning, as Christopher Snell can demonstrate. The problem is that CFS patients get demonstrable worse with increased exercise.)

January 17, 2013 at 7:08 am
(4) Kylie says:

Lolly, are you suggesting that people with fibromyalgia don’t have a real illness? In both FM and CFS there is no final evidence or agreement on what causes the conditions. I started out with CFS and then developed FM. However I don’t personally think there is a huge difference, despite them being treated by different specialists.

I think there is a good case for describing them using an umbrella term, which may get BOTH conditions taken more seriously, and consequently, increased acceptance and research funding.

January 17, 2013 at 9:29 am
(5) Pacingin PA says:

From your link: “Central” refers to the central nervous system, which is made up of the brain and spinal cord. “Sensitization” describes the end result of a process that leaves someone sensitive to a particular kind of input.”

This classification resonates with me. I feel as if my brain is affected by CFS. My “particular kind of input” is stress of any sort – emotional, physical, intellectual. Balance is key to my functionality. Overdo it and I pay.

January 17, 2013 at 8:39 pm
(6) Scarlet says:

I don’t care about the label. I just want a cure.

January 17, 2013 at 9:17 pm
(7) lolly mcdermott says:

@ Kylie: I said nothing of the sort. I said that CFS should not be lumped in with FM because CFS is characterized by immune dysfunction, and that chronic viral and bacterial infections are both quantifiable and treatable. There is over 20 years worth of published research to support this, so what you have personally been diagnosed with does not impact those study results in any way whatsoever. Sorry but I’m not interested in being thrown under your umbrella with GET, CBT and antidepressants as treatments when my condition is characterized by, and has improved by treating, quantifiable infections.

January 17, 2013 at 11:37 pm
(8) cindimomma says:

Actually there is information about a link between fibro and immune dysfunction, (link to recent study) http://www.biomedcentral.com/1472-6890/12/25 I also have a son who was diagnosed with fibro at 16, he is now 21. He was born missing an immunoglobulin part of his immune system. I also have a daughter who has fibro that was diagnosed at 22 and is now 32. She was very deficient in the same immunoglobulin her brother had none of and had many immune system problems. Interestingly enough, I do have a 3rd child, same dad as the other 2 who does not have fibro, he is in the middle of them, and has no immune deficiencies. I have always thought there was a tie in, for many reasons-medical similarities of symptoms when they were sick when they were young, such as allodynia, if they had a virus. That is not a typical viral symptom for a normal child, but they would both complain of it. Obviously that is a fibro thing, that sort of thing.Anyway, not going to write a book, just wanted to voice an opinion that there is some ideas out there of a connection between immune dysfunction and fibro

January 18, 2013 at 1:14 am
(9) lolly mcdermott says:

@cindimomma, if I were you, I would not accept fibromyalgia as the sole diagnosis for children with primary immunodeficiency. Doctors do misdiagnose sometimes.
The infections found in CFS include the herpes viruses HHV-6 & 7, Epstein-Barr, CMV, and VZV, plus Parvovirus, Mycoplasma pneumoniae, chlamydia pneumoniae, and coxsackie B. The disease was well-characterized during the initial outbreak in the 1980s, but since then there have been 2 subsequent definitions used in the US, the most recent of which cannot distinguish between CFS and major depression. If you want to understand what CFS is, you should read the book “Osler’s Web”.

January 18, 2013 at 3:53 pm
(10) ann k says:

I totally agree with Lolly! People with CFS such as myself for 23 years have never experienced fibermyalgia as it is defined. I do have aches and pains, but that is due to age and the inability to exercise. When you tell doctors that you have one ailment , they oftentimes automatically jump to the conclusion that both conditions exist. No they are different. They both may be experienced by some people, but they do not necessarily go hand in hand. Also I may be wrong but there seems to be alot more research going on in the fibermyalgia department than that of the CFS’s one.

January 18, 2013 at 4:22 pm
(11) Ann says:

I have been in constant pain and exhaustion for 20 years. There seems to be no end, or true understanding, of my situation in sight. The quality of my life has been hugely diminished & trying to work through all of this has been a nightmare beyond belief. I’m at a complete loss to know how to improve my lot in life.

January 18, 2013 at 5:19 pm
(12) Renae says:

I agree with Ann. I have been so very sick since 2008. In 2009 I had some kind of episode that I define as the moment that I knew I was never going to be well again. I developed high fevers, pain, fatigue,constant bouts of diarrhea, sore throat and on and on. The main cause of this illness was never determined. I was sick like that for 3 months! Bedridden is more like it. I was constantly in a battle to keep myself hydrated because anything I tried to eat or drink ran through me in less than 10 minutes. It was like someone pouring out a bucket of water. After being scoped from top to bottom, ct scanned, barium enema, lots of bloodwork I was sent to an infectious disease specialist who said that there was definitely some type of syndrome taking place. She also said that it could possibly be sarcodosis which I was diagnosed with in 1992. I was on steroids for months before that got better and never thought about it again until 2009. She said that the indicator in my blood showed that it was active somewhere in my body but they couldnt locate the area. From that timeon I have been sick, in such pain and will have incidents like I had last night. I was actually feeling better yesterday and my pain was at a very low level. Then about 5:30pm I started to feel diffuse pain all over my body and was lightheaded and had a fever of 100. This went on all night and then this morning no fever. I wish there was someone out there that could tell me what is really wrong with me. I think I have something like lupus and just haven’t been diagnosed.

January 18, 2013 at 5:22 pm
(13) nancyjean says:

Regarding the CFS and Fibro separation, I disagree with this theory. I was correctly diagnosed with Fibromyalgia after a severe attack of Epstein Barr many years ago. I was diagnosed by the best teams of physicians in 2 top research hospitals in the US.. I have all the symptoms of Fibro and very, very few of CFS. My main symptom is chronic pain. I also have periods, though not severe or long in length, of fatigue and my immune system does not appear compromised. I regularly take meds for Fibro symptoms. These meds work wonderfully and offer me a better life. Lolly, I am also informed of all you have mentioned. No doubt there are just as many valid studies that dispute your information. My body disputes this. I choose not go into a discussion with you because I am forced to live the opposite of what you insist on. I am a retired/disabled researcher and the facts I’ve studies are just as valid as yours. I am an unfortunate and excellent exception to your insistance. The blurr between CFS and Fibro will continue until research can correctly define CFS and Fibro. At the current time, with no conclusive/specific evidence, it’s merely one’s educated opinion. No one person can know every trial, study and grouping of symptoms in our worldwide research with worldwide patients. Please accept that there are different opinions and acceptions. I do because I’m one of them. Take care.

January 19, 2013 at 12:21 am
(14) Pr Chris says:

I agree that there are two different diseases: FMS and CFS. Some of us have only one and some only the other, and some of us have both. I don’t know whether or not reasearch efforts will be helped by a common label or not, I only know that the one (FMS) I am diagnosed is real. I have had it since 1987; I know exactly what the precipitating cause was, and even though I could not get physicians at Bethesda Naval Hospital to acknowledge it, I knew it was not “in my imagination.” I am tired all the time…tired because everything hurts all the time. Get rid of the pain levels and I have no doubt it will help my energy levels.

What I would love is to be able to get up in the morning and taking more time to stand up than my 88 year old mom–everything stings, and hurts…and I’m just tired of it. It cost me my Navy career, as my superiors said I was malingering; it cost my the ability to continue in ministry, as my parish deserved a fully functioning pastor. I’ve had it for 25 years. That’s long enough!

Pr Chris

January 19, 2013 at 3:18 pm
(15) Penelope says:

Given the wide range of conditions proposed as CSS, I do not see a danger in CFS and FM being included. No one is going to confuse migraine with pelvic pain and no one is suggesting CFS and FM are the same condition.

I agree with Adrienne, that it would be great to see CFS and FM clearly placed in a category that recognises the physical dysfunction and does not suggest the problem is simply psychosomatic, malingering, depression or laziness.

January 20, 2013 at 10:47 pm
(16) Camper Jen says:

I was diagnosed with Central Sensitivity Syndrome while in Chronic Pain Rehab in 2011. The term was coined by Dr. Muhammad Yunus in 1984 to describe the unifying concept that the CNS and endocrine systems are involved and certain systems of the body being abnormally hypersensitive and hyperreactive to various stimuli. Cenral, Peripheral and Autonomic Sensitivity. The disorders that fall under this are:
-CFS
-FM
-IBS
-Migraine
-Tension Type Headache
-Multiple Chemical Sensitivites
-Primary Dysmenorrhea
-Periodic Limb Movement DO
-Restless Legs
Temporomandibular Pain and Dysfunction
-Myofascial, Regional FM

For me, I have all of the above except for 3 of them. I have decided that the best approach over all for myself has been to calm the CNS down with dietary and lifestyle changes. That has helped regulate some of my pain flare ups and with symptom management.

January 20, 2013 at 11:06 pm
(17) Camper Jen says:

I forgot to add PTSD and Intersticial Cystitis in the list above.

January 21, 2013 at 12:27 am
(18) AndrewK says:

The problem with CSS is it is not specific at all, therefore useless when it comes to treatments.

Without demonstrating evidence of sensitisation pathology, this simply yet another hypothesis.

January 21, 2013 at 6:48 pm
(19) kat says:

Please, camper Jen, tell us what you do to improve things. I have most on that list as well. I had severe mono about 8 years ago and have never been well since, if you can even say that; I was bitten by a tick when I was young and was not appropriately treated. I don’t show all markers for Lyme now so i can’t get Lyme treatment with my insurance–not even sure if that would help, but does anyone else have any Lyme connection?

Among my ailments are chronic fatigue, hyperacusis, joint pain (particularly knee), poor sleep, periodic limb movement disorder and delayed REM (does anyone know anything about that last one?). I’ve had inflammation for years (elevated CRP, also uncontrolled) and I have degenerative disc disease. And I’m young–age wise, not in energy– so I don’t have allies in medicine, who say I’m simply depressed. I learn most from my peers, but I find on forums like these people oddly don’t want to discuss the regimens that help stabilize them, which would be the most helpful info of all. Yes, I know not everything works for everyone, but I’m willing to try everything– if people can tell me what roads to walk down, I’ll walk down them. Maybe you take herbs/meds I’ve never heard of I need to ask about. Please give me some hope and be specific (this applies to all who have alluded to things but not mentioned them, not just Jen). Thank you!

January 22, 2013 at 12:29 pm
(20) georgia says:

To Kat:
Before sharing with you what helps me to manage my conditions (fibro, myofascil pain, & osteoarthritis) I would like to recommend the internet medical community of WebMD re: Fibromyalgia. Here you will find a community of many members who continually share methods of treatment that have helped them. I visit the website daily as it has been therapeutic not only physically but mentally & spiritually as well.

Warm water aerobics has very much helped me in maintaining a more flexible body. I visit the pool daily & as a benefit to helping me overcome bodywide stiffness, I also enjoy the commeraderie with those using the pool, many of whom suffer similar conditions.

I prefer not to use pharmaceuticals because of unpleasant side effects. I keep my weight down & eat a healthy diet that includes lots of vegetables, fruit, whole grains, beans, nuts & nonfat yogurt. The supplements I take include calcium, magnesium, vitamins C, D, & E, COQ-10, 5-HTP (for better sleep), & L-Lysine.

In addition my daily pool therapy, I stretch & move around, even simply walking around the house, throughout the day. Motion is Lotion & being in one position for too long is not good for us or anyone, for that matter.

I hope you find this information helpful.

January 29, 2013 at 1:37 am
(21) Kylie says:

Thank you Nancyjean for highlighting the researcher’s perspective that there is still a lot we don’t know about these conditions.

Kat, I’ve had FM for 5 years following 2 years of CFS, with the common story about it taking years for diagnosis. Once I found a general practitioner who understood I wasn’t just another “supermum-wannabe”, and I got the diagnosis, I could start to move forward.

What I’ve found has helped me is:

- looking hard at diet. I did an elimination diet specifically because I thought my kids were sensitive to certain food chemicals. Turned out that when I eat things with salicylates, I ache. So this means lots of fruit and red/yellow veggies have to be “sometimes” foods for me. Also MSG and naturally occurring glutamates make me more prone to IBS.

- supplements – especially magnesium and CoQ10 as Georgia says. CoQ10 is essential for my energy levels as is vitamin B12. I also take a multivitamin and – not every day but usually – also take zinc, calcium, a vitamin B supplement (or individually, B2, B3 and B6). Licorice extract tablets seem to help my energy levels a little. I’ve just added Spirulina to my supplements and it’s early days, but I think it helps with energy too.

- Fish oil especially Omega-3. I take 9g/day and it helps with pain and clear thinking.

- Coffee: I swapped to decaf, and the effect on my energy was huge. I don’t have the 3pm crash and falling-asleep-at-the-desk anymore.

- Cymbalta – this addresses the biochemical imbalances. My mood is better than it used to be, but more importantly, it has helped with the pain. If you think of it as failure or “treating depression”, that mindset doesn’t really help! But if you think of it as treating biochemical imbalances, which helps you to function better, it makes the treatment palatable enough to give it a reasonable try.

January 29, 2013 at 1:38 am
(22) Kylie says:

Part 2!
- Lyrica – for pain management, this has been the thing that probably made the most difference for me. I still get breakthrough pain at times which I manage with codeine or ibuprofen.

- Pacing – I learned that my body will only allow me to do so much and I have to respect that. I can now work full time again, but I’m limited in the evenings and on weekends, particularly during flares. At the weekends, I sort of relax and my body thinks it’s time to sleep or chill out. Housework be damned, to a large extent, my rest and health is more important than having an immaculate house.
- I also know that I can only do energetic things, like gardening, walking, or running a training session, for a limited time. Gardening, it’s now about 75 minutes. Then I rest – even just sitting quietly while I read or have afternoon tea- or else if I push past my “energy envelope”, I’m going to lose hours in sleep later.

- Don’t feel guilty that you can’t do everything you want to or used to. Guilt takes up energy.

- Meditation can be helpful. Sometimes even the very simple act of looking upwards can help relieve pain, at least temporarily. And breathing through it until painkillers set in.

- Exercise – taking it slowly and only doing what you can reasonably do. Go too far and you pay the price physically, but complete inactivity isn’t an option for me either, since I ache more if I’m too still. I need to move around to keep all the muscles working.

- Skin tenderness – if anybody knows anything to reduce this, I’d really appreciate your advice!!

- I haven’t used GET or CBT. I don’t believe this disease is in my head for a moment. I also don’t believe I have chronic infections.
I do know that my nervous system is “highly strung”, and always has had a tendency to be too sensitive to noise, light, etc.

Kat, I hope there will be something in this very long comment that will help you!

February 8, 2013 at 10:31 am
(23) jayne57cat says:

Its the sweating that really is a problem at the moment for me.
Oh and the skin problems!!
My nails are now all turned in and the slightest bit of damage causes them to overgranulate….very pretty! Nobody knows what to do about it though
Jayne

February 9, 2013 at 5:00 am
(24) Ann says:

Kylie’s comments really resonate with me and overall the comments make me feel that I’m not going mad after all. I have had a few things which could be connected with my illness – a very bad bowel infection about 15 years ago (so bad that when I was creased up in pain my daughter said “You’re not going to die are you Mum?”) an episode where I put on a preparation for head lice and left it on overnight not knowing that these contained organophosphates – about the same time although I can’t remember which came first. I was full of life and energy and then slowly I felt more and more ill with strange intenstinal rumblings aand feeling incredibly tired and having to lie very still on the bed for an hour or two whilst the tiredness passed. I also had a tick bite 10 years ago which may or may not have had any long term effect. All I know is that I feel really unwell all the time but carry on despite this. Physically I am in a bad way with extreme stiffness but as with Kylie swimming is something I love and can do, but not in very cold water or in noisy pools which makes swimming in public pools really difficult. I had 2 years of tests, was referred to my local ME/CFS clinic for therapy (mainly pacing) and pacing is good but not a cure as you know. Still my doctor says Get a job you’ll soon feel better and I got this from 3 of the 4 doctors in my local practice – deeply depressing! I could say hundreds of other things about my symptoms (most or all of which are repeated on this site) but just to say it makes me feel less of a fool and that this is all in my mind (which I know it;s not, and it’s not depression, I know the difference) by reading other people’s experiences so thanks!

February 13, 2013 at 11:01 pm
(25) Dana says:

if you goto my website myspace.com / gsgrl2000 (or 2001) you can read what I wrote about all of this; It’s titled Mycotoxicosis…. you will find links and other info regarding what all this should be titled or not… it’s worth reading for anyone who has been diagnosed with Fibro, CFS, Mycotoxicosis, Lyme, Lupus, MS, etc…..

February 21, 2013 at 7:28 pm
(26) Gerry says:

I would like to find some treatment for FM &CFS as I have both. I am unable to take anti inflammatory medications.
The pain is treatable to a degree but I find the fatigue to be so intense that it has taken over my life. Some days I am unable to function at all, on those days I find my FM to be a lot worse:other days I feel like I have not had any sleep and yet I have had at least 8 hours.
I have almost become house bound through the fatigue. I had the Mononucleosis Virus a few years back and I have never felt physically or mentally [brain fog] since.
I have two daughters who also had the Virus and both suffer the same symptoms as myself. Any advice is most welcome . Gerry

May 2, 2013 at 11:42 pm
(27) mzt pills says:

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(28) http://endofbusinessasusual.com says:

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July 16, 2013 at 3:32 pm
(29) Sharonlee says:

I stumbled upon this site while looking for something else. I KNOW what caused my Fibro. Chemotherapy. 27 years ago I was diagnosed with stage 3 Ovarian Cancer. Had chemo consisting of cysplatin, cytoxin, adriamyacin. Around 6-7 years after that I started feeling physically miserable all over, totally exhausted, etc. After a couple of years of being told by doctors it was all in my head, went to an ovarian cancer site and posed the question: “Are there any long term survivors who had the above drugs who have any kind of problems since having chemo?” Received 9 replies, all 9 saying they had fibromyalgia. I had never heard of it. Looked it up and there I was! The interesting thing about this is when I was having chemo I asked my oncologist if there would be any long term effects. She said no. BUT, one of the nurses told me I’d probably start having issues 7-8 years down the road. So, they know… Granted, it no doubt saved my life, but a heads up on future misery would have been nice.

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