Central Sensitization - please share your stories

Posted by Rachel, Volunteer Mentor @rwinney, Apr 14, 2020

Hello everyone
I would like to better understand this diagnosis from personal experiences and compare what I feel to others accounts. I have not been diagnosed with central sensitization however, it seems to line up. Thank you very much and I look forward to reading your stories.
Rachel

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@rwinney and others. Also, be aware that in his "Life after pain" book, Dr. Jonathan Kuttner has a "Phoenix program" and a "master your pain system" program that uses mind -body teachings, etc. to talk about getting out of pain / retraining your pain system. It is beyond the book and I believe somewhat expensive - but you'll need to check their pricing if interested at: https://lifeafterpain.com/info/products/ if things don't work out with your other pain clinic and pursuits.

Someone mentioned there are biochemical changes in the brain and nervous system that potentiate the pain. That is correct and known. It is not "all in your head" There are numerous scholarly articles about this is you search "scholarly articles and pain sensitization". Lot's of biochemical and medical terminology but basically the nervous systems gets excited (here is one: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2750819/). You will presumably need to partly retrain the pain system (Dr. Kuttner talks about this malfunction a lot and does have those programs above, that may help retrain the pain system) and he also has various videos (and stories of success and peoples struggles) out on the web about pain (and relief). Good luck.

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@richman54660

@rwinney and others. Also, be aware that in his "Life after pain" book, Dr. Jonathan Kuttner has a "Phoenix program" and a "master your pain system" program that uses mind -body teachings, etc. to talk about getting out of pain / retraining your pain system. It is beyond the book and I believe somewhat expensive - but you'll need to check their pricing if interested at: https://lifeafterpain.com/info/products/ if things don't work out with your other pain clinic and pursuits.

Someone mentioned there are biochemical changes in the brain and nervous system that potentiate the pain. That is correct and known. It is not "all in your head" There are numerous scholarly articles about this is you search "scholarly articles and pain sensitization". Lot's of biochemical and medical terminology but basically the nervous systems gets excited (here is one: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2750819/). You will presumably need to partly retrain the pain system (Dr. Kuttner talks about this malfunction a lot and does have those programs above, that may help retrain the pain system) and he also has various videos (and stories of success and peoples struggles) out on the web about pain (and relief). Good luck.

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Hey @richman54660...thanks again for reinforcing valuable information and knowledge. I'm on it! Somethings got to give before I go nuts.
Rachel

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@rwinney

Hey @richman54660...thanks again for reinforcing valuable information and knowledge. I'm on it! Somethings got to give before I go nuts.
Rachel

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@richman54660 Thank you very much for being an advocate. The government article was a tough read (as usual) but, my Life After Pain book arrived today and is an easy read! I'm very pleased with it so far and am connecting, which I had hoped for. Its definitely one that I will read multiple times to fully absorb. Dr. Kuttner has a great way of breaking it down sensibly and I'm able to line it up with my findings so far on Central Sensitization Syndrome via Google and Dr. Sletten from Mayo's Pain Rehabilitation program.

I am always so grateful for this forum and all the opportunity it provides for continued learning. I just cant say it enough. Thank you Connect!

I will be sure to share my experience further after completion of the book in hopes it can help someone else understand crazy widespread, chronic pain that leaves a person housebound and completely confused.

Be well,
Rachel

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Hi all just want to share an update ,
My doctor and chronic pain specialist have ruled my chronic pain down to conversion disorder. It’s all very confusing and difficult when my doctors are talking to each other but not to me. A new symptom I now have is pins and needles in my left hand and pain when making a fist or grabbing things and I just have to put up with it until it goes away if it goes away. I’m quite frustrated and feeling so lost. Wishing my doctors would talk to me instead of give me websites where I can read about the disorder.

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@tara333 I'm sorry you are in such turmoil with your pain and diagnosis. I've never heard of conversion disorder. I'm up at 4:30 am because of new odd pain in my pelvic area which began with an intense bout sporadically 2 weeks ago then nothing til yesterday morning when a sharp pain, and now intense ache woke me while sleeping

I feel bad for you and understand how nerve wracking unknown pains can be. Your hands and wrist pain sound like nerve malfunctions. Have they ruled out neuropathy?

Hang in there and please keep communicating with your Drs and let them know that you need them to be more accountable to you. Good luck, rest easy and please keep us posted.
Rachel

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@rwinney

@richman54660 Thank you very much for being an advocate. The government article was a tough read (as usual) but, my Life After Pain book arrived today and is an easy read! I'm very pleased with it so far and am connecting, which I had hoped for. Its definitely one that I will read multiple times to fully absorb. Dr. Kuttner has a great way of breaking it down sensibly and I'm able to line it up with my findings so far on Central Sensitization Syndrome via Google and Dr. Sletten from Mayo's Pain Rehabilitation program.

I am always so grateful for this forum and all the opportunity it provides for continued learning. I just cant say it enough. Thank you Connect!

I will be sure to share my experience further after completion of the book in hopes it can help someone else understand crazy widespread, chronic pain that leaves a person housebound and completely confused.

Be well,
Rachel

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I've completed the book, Life After Pain by Dr. Jonathan Kuttner. I navigated through what specifically applied to me and gained good knowledge, insight and useful tools about breathing, redirecting my mind and pain categorization. I believe the book does not necessarily provide help for neuropathy patients as much as it does for let's say recovering back pain and surgery patients. I'll take some of what I've learned and try to keep applying helpful ways of dealing with my pain.
Rachel

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@rwinney Yes, Dr. Kuttner is easy to understand and his original book is only about $12.00. I also use the "Life after pain" supplemental material he offers. I've bought the bonus collection, the posture course, trigger point course. He has other programs about pain sensitization and how to reduce it, too (mind - body techniques, etc.) for pain.

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@richman54660

@rwinney Yes, Dr. Kuttner is easy to understand and his original book is only about $12.00. I also use the "Life after pain" supplemental material he offers. I've bought the bonus collection, the posture course, trigger point course. He has other programs about pain sensitization and how to reduce it, too (mind - body techniques, etc.) for pain.

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Yup, and we keep working.

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I just put a name to my problem -- central sensitization.. Doesn't feel any better, but I fell 6 months ago, and I now have Plantar fasciitis, neuropathy, bakers cyst, a thumb that goes in and out of joint. And before all this I have been dealing with patellarfemural syndrome since 10 months ago. I tried pt for 7 months, during which I fell and the pandemic closed everything down. I've been using exercises from pt that I can do at home, but had to give up using the Nustep machine, which felt was really helping. I can walk if my feet aren't hurting. I don't see any solution in the foreseeable future. I'm seeing a chiropractor who gives ms temporary relief. I. Have an appointment with a sports medicine doctor for my hand. I'm waiting to get into a local pain clinic. The irony is that I'm 85 years old and have always had a high pain threshold. We should have a secparate "home" for this.

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@cldmeyers Its almost like a perfect storm. I'm sorry to hear of your troubles and pains. Having a title or diagnosis for your pain is gratifying for sure but, isn't always game changing when it comes to fixing it and making it disappear! Central Sensitization seems like a catch all but, does prove scientifically if you piece it all together. I feel as though I have it too but no official diagnosis. Good luck with yours.
Be well,
Rachel

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