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Central Sensitization

Hi. I am a new member and am not sure if i am doing this forum thing correctly. I have never done something like this before so here's hoping I am not making a total fool of myself.
I had an accident 4 years ago and injured my T3/4 and C2/3/4 discs. The injuries to the discs did not warrant an operation. Since the injury my life has changed dramatically. Load bearing activities especially driving and sitting result in pain. I have worked with/ through the pain for 4 years in a job I love. For 4 years I was able to ignore and work through the pain most of the time. 4 times during this 4 years I had extended periods off full-time work and was supported by specialists to gradually return to work.
This is not the case anymore. I now have severe pain flares which last for up to 14 hours at a time and come on suddenly ( every Wednesday) and either Friday or Saturday. ( Comparable to the pain of child birth). There is nothing i am doing that provokes these flares apart from being upright. Believe me, I am very aware of my activities and have kept a diary for the last 7 months. Because of the escalating symptoms I have been forced to stop work. A really difficult decision after two decades of exciting and fulfilling careers. It wasn't fair on my employers and it certainly wasn't working for my health.
For the last 7 months major flares have been so easy to provoke that even small amounts of pain set them off. I am no longer able to exercise, tramp, garden, remain upright for more than 2 hours at a time...
I am currently being looked after by a team of pain experts at a pain clinic in Auckland NZ and have been trained to use mindfulness practices daily as well as specific exercises. I have been diagnosed as having "central sensitization." I am on opioids ( not particularly useful now as I have built up a tolerance to them and only take the recommended dosage) , anti- inflamatories, Gabapentin ( maximum dosage-3200mg daily). I believe I have a good understanding of central sanitization and what is happening with my central nervous system.
As well as the pain clinic i have regular appointments with my doctor and I have acupuncture weekly and soft tissue release on neck and back muscles with my Physio. I also take vitamin D, B and selenium daily. I am also taking myself off to a naturopath/ herbalist to fine tune my diet. I avoid caffeine, alcohol, and processed and highly refined food I.e. back to basics type diet. Miraculously I am not depressed and keep myself entertained and distracted with craft projects I can do in a lying or reclined position. When i can sit for extended periods of time i shall write a book about the 101 craft things you can do and enjoy lying on your back. Lastly and most importantly I am blessed with a very supportive husband.

My questions are
- Does anyone else suffer from this condition and what works with reducing the symptoms that I am not already trying?

- Why isn't central sensitisation listed on this website? I know there is research out there about this condition

- Does anyone know of any good articles/ research about this condition especially relating to what works in reducing the symptoms? The things I have read so far say things like central sensitisation is incurable, I may be genetically predisposed to it ( my sister suffers from severe migraines and has had 3 neck operations) and I just need to learn to manage the pain. Aaaaargh! Is this as good as it gets?

I would be so very grateful for anything that would help me to regain the life I had prior to my accident. I am so over the pain! I have high expectations for my recovery and hope there is someone out there in "forum land" who can help me attain my high expectations. If not, my book about 101 craft things to do lying flat on your back, might need to turn into a trilogy.



  • I believe that most folks that fall into a situation similar to yours, are diagnosed with Fibromyalgia as well as Chronic Fatigue Syndrome. You may find more answers by researching from that perspective.

  • KarenDKKarenD Posts: 742
    edited 07/01/2012 - 10:58 AM
    I haven't heard of central sensitization. What is it and what is it caused by. You have made the symptoms very clear.

    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    Very interesting reading on dictionary.com that will send you to another site. Bottom line: fibromyalgia, and many other categories that are related. To many to list but they are all very similar.
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • doingwellddoingwell Posts: 9
    edited 07/01/2012 - 10:22 PM
    I attended a PM course for 3 wks in Sydney, AUS 2 yrs ago
    This topic was covered
    It's almost like cognitive behavour therapy
    There is a very good book called How To Manage your pain.
    It covers this and many other topics
    At 1st you think it won't work but it does
    2 years ago I couldn't bear a sheet on my foot, I now can
    I couldn't tolerate a sock or shoe. I still have all those funny nerve sensations but tolerate them better
    Hope this may be some help
    Because of the pain our nerves get stuck on so to speak
  • EmilyEEmily Posts: 112
    edited 07/02/2012 - 4:29 AM

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  • starryeyedprizesstarryeyedprize Posts: 1
    edited 07/03/2012 - 9:39 PM
    I can relate to you. Lying down or a reclining position to relieve the pain. Once the pain sets in, its hard to control with meds. I never have a day without severe pain. I am not able to work, going to the market, driving and walking sometimes is a task. I was diagnosis with CRPS ( Complex Regional Pain Syndrome) after a back surgery, again no cure. You can get it from any accident or surgery (nerve damage),it is not genetically predisposed. I must say it is the worst pain I have every experienced. The pain I had before my back surgery is nothing compared to this pain. I have had 7 lumbar sympathetic blocks in the last year and a half. My follow up with my pain doctor last week suggested a spinal cord stimulator. Although based on the blogs and research they are many complications happening with these stimulators. I also found a pain clinic in west Los Angeles that does the Ketamine infusions which seems to be helping the pain for a lot of people. Dr. EDITED chair of the International Association for the study of Pain (IASP) group on sympathetically mediated pain. Dr. EDITED is director of the Center for Rehabilitation of Pain Syndromes at UCLA Medical Plaza. Utube has several video's of Dr EDITED and CRPS. Best of luck to you and I hope you fine some relief instead of progression of your symptoms.

    Post edited to remove name of medical professional by The Spine-Health Moderator Team

  • I, too, have recently been diagnosed with central sensitization syndrome although I believe I've had it since 1979.  The doctors wrote fibro and told me I had too much pain in too many places for fibro.  Through the years, the pain has changed from not being able to hold my neck up, to being able to play golf once in a while, and now to pain when I touch things such as holding my phone, holding my husband's hand, and laying on my back at night in bed.  I have luckily had 3 successful back surgeries,  tried all kinds of medicine,  been to 3 clinics for testing, had many physical therapist, injections, and been to many doctors.  I took NSAIDS at first until they damaged my colon, tried all kinds of SSRI's, etc.  They all had bad side affects, so I was down to opoids.  They helped at first, but my neurologist said I should get off of them because long term opoid use can cause more pain.  So I went through withdrawal and got off off opoids.  I still had pain, but it was a different kind of pain, not as bad.  I do take medicine to help me sleep. I'm going to counseling because of the fear and anxiety over  being sick all the time.  I have discovered through the years that when my mind is busy, I don't notice the pain as much.  My life is like a roller coaster from hour to hour.  I try to ignore the pain, use a lot of ice packs and keep busy.  
    I also go to a wonderful pain support group--helps to talk to other people and know you're not alone.  I have a very supportive husband and just try to live the best life I can!
    There is actually a lot of information on the internet about central sensitization syndrome because it is becoming more accepted as a real  medical problem.

  • SavageSavage United StatesPosts: 5,427
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • itsautonomicitsautonomic LouisianaPosts: 1,805
    edited 02/29/2016 - 1:29 PM
    Central Sensitization does not equal fibromyalgia, that is something to remember.  Fibromyalgia needs to be determined by someone specializing in it.  Many disorders of the nervous system have " central pain" , but it could range from CRPS, fibromyalgia, MS, central pain syndrome and many other disorders some much more painful than others.  When I was disagnosed with central pain syndrome I asked my doctor is in fibromyalgia because I went to a specialist for it and they said thats not what I had.  The PM/neurologist said it is definitly not fibromyalgia.  Centralized pain is simply stating a pathway of pain and it has been around since the the civil war era, they recognized pain that was worse than the injury seemed or horrible burning when amputated leg ( now known as phantom limb pain).
    I would suggest anyone diagnosed with central pain specifically ask and have evaluated if its fibromyalgia or not.  The typical meds they use for fibromyalgia had no effect on my pain, once properly diagnosed and the doctor saying these are not the correct meds I was put on for my type of nerve pain, I was put on  another type for central pain syndrome and immediatly the not being able to hold hand or phone without burning pain has gotten much better and I had sypathetic blocks done which helped foot for a while tremedously.  Proper diagnosis equals proper ( best tailored) treatment in every case, no exceptions.
    So many things can cause central sensitization, failed back surgury and long term opiod use in some cases.
    CRPS and fibro both have a central component, but CRPS can actually destroy and damage tissue so you can see the difference in these two central pain pathway disorders.  Fibromyalgia should only be a diagnosis of exclusion, once everything has been evaluated and ruled out and then you meet the criteria, it is only then that diagnosis should be given.  It often is a lazy doctor diagnosis given much to early, at a severe detrement to the patient getting on right treatment track. 
    You just cannot understand how important getting the diagnosis correct is in neurological issues are.  We had a 30 year old married mother of one die from ALS two weeks ago that went to school with my girlfriend, early on she was told its just basic neurological issue, fibromyalgia and neurapathy causing the pain and dysfunction.  She did not buy the progression and flew to major teaching hospital and the doctor sat down and began to cry and said you have Lou Gerig disease.  She was in the paper three times in 15 years, pitched team in high school to state championship and was player of week, diagnosed with ALS and obituary.  I am not suggesting this is what we are talking about in this topic , but others may read this going through their own neurological problems with central pain and I feel its important to know this and be wary if something feels wrong with the diagnosis always listen to your gut and get clarity.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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