Central sensitization syndrome and treatment?

Hi there @darby413. Hopefully you are feeling some sort of relief having a diagnosis of CSS which explains your ongoing chronic pain. I am sorry and understand the toll it takes in trying to figure out what's wrong and why.

Please take a look at the following video by Mayo Clinic's Dr. Sletten on central sensitization. The first thing is to truly understand what's happening inside your body and why, then, how to treat it -

Dr. Christopher Sletten - Central Sensitization Syndrome:
https://youtu.be/vJNhdnSK3WQ?si=K9ghZQDC-tMlB3wh

I'm impressed that you are open to non-drug treatments. It's wonderful that you are advocating for yourself. My CSS diagnosis meant that I had to learn and focus on lifestyle changes in order to better manage chronic symptoms.

Here are some discussions you may find helpful that share others experiences of living with CSS (*please keep in mind CSS may present differently for each person*).

Central Sensitization Syndrome - Please share your stories:
https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories/

And, my CSS journey of going through the 3 week Mayo Pain Rehab program -

Mayo Pain Rehab - Signing off and my comeback after:
https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/

It can be a lot to take in, but there is hope, and living with CSS can become more manageable with work.

May I ask - how do you feel about your pain clinics' doctor's diagnosis of your pain? Do you feel that all other possibilities have been ruled out and you are agreeing that CSS is the final answer?

Rachel-
Thank you for your response. I will look at the information you mentioned.
I was at the pain clinic at Mayo and yes I did like the doctor. Besides my back issues and central sensitization , I have rheumatoid arthritis, fibromyalgia, and plain old osteo arthritis to stir in the pain mix.
So to say CSS is the final answer, I will say no. I am waiting to schedule an appointment for a nerve ablation for the painful area of my back. (I've had them before with good results.) The doctor and I have a plan to try one thing at a time and not try to throw a lot of things at the pain at one time.

Until the insurance company approves the procedure, I have been taking classes through our local hospital on Chronic Pain Management since mid-January. This class is 3-8week classes which includes Cognitive Behavior Therapy, Hypnosis, and Acceptance & Commitment Therapy. I was told that this is similar to what Mayo offers. I am half way through and have found the hypnosis classes helpful.
So I am waiting for my procedure with hopes of success. Until then, my saga goes on.

Hi @darby413 - how are you doing this week?

It's great that you are taking pain management classes while you wait for insurance approval, can never have too many tools in the pain management tool belt. I have never tried hypnosis, but I'd be curious to learn - in what ways has it you helped so far?

How long ago was your last nerve ablation, if I may ask? Are you not concerned that having an invasive procedure like an ablation will stir up your CSS symptoms?

Hi. I was diagnosed with Central Pain Syndrome 3 years ago. I have flareups in most of my body and have lost muscle/tissue and grown weaker. I recommend this book: How To Live Well with Chronic Pain and Illness by Toni Bernhard. Also, I took a wellness class twice that used this book: Living a Healthy Life with Chronic Pain by a bunch of Stanford authors/. Sandra LeFort, Diana Laurent, etc copyright 2021 published out of Boulder, CO. The COVE app helps me with meditation and breathing. Exercise like walking and others from my PT. I also have a counselor I meet every 2 weeks. I have a psychiatrist for my medications. No more info on the diagnosis. I feel strongly that there is more to my diagnosis. Hope this helps. Take care.

I’m happy that you found what helps you. I believe that they have helped me too, with the addition of meditation, relaxation techniques of a couple types, and very low impact exercise. To be clear though, neurologists and my confirming research indicate that “post stroke central pain”, and “central sensitization pain syndrome”even if they sound the same, and even though all pain experiences involve the brain, are not the same animal! They are not the same because their origins are not the same. Central post stroke pain can come from brain or spinal cord injury. Central sensitivity pain comes from a bodily pain somewhere that has been prolonged and amplified by the pain. Top down or bottom up is how I understand it. I leave what the symptoms of each are and what treatments work to others. I would guess though that they are pretty much the same. I take lyrica, Savella, and lamotrigine, and will try dropping the Savella soon. Respectively.
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Thank you so much for that new information for me. My pain specialist never gave me that important info!! Also, I forgot to mention what REALLY helps me is being outside. Having 2 bird feeders and watching the birds is so calming. Thank you to all who have responded to my posts. Very helpful.

I would like to share my symptoms with others that have Central Pain Syndrome. I’m a 65 year old woman. Flareups and muscle spasms for almost 4 years. Muscle/tissue degeneration. Facial, hands, wrists, neck, joints, pain. On meds but still have bad pain. Losing weight. Numbness body wide. Thanks.

Hello @sue15, I combined your discussion with an existing discussion titled, "Central sensitization syndrome and treatment?" - https://connect.mayoclinic.org/discussion/central-sensitization-syndrome-and-treatment/ where you already met @bestofthebest and @darby413.

You may also want to check out the following discussion: "Has anyone been diagnosed with Central Sensitization?" - https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-central-sensitization-if-so-id-like-to/. It is a lengthier discussion but continues to be active with members discussing central pain syndrome and sensitization.

@sue15, you mentioned in this discussion that being outside really helped you, is that still the case, or have you progressed more that you are finding it difficult to find anything that relieves your symptoms?

Yes, I do get out every day and try and walk, watch the birds, weeding. It’s my therapy. I like to visit new places. Thank you for the recommended conversation-I will check it out. It seems not only my CNS but my bones are being affected. I see my GP Monday.

Also, and mort importantly, I am getting worse. My wrists and hands hurt terribly and are very painful. My neck’s left is consistently painful. My hips are hurting now so my balance is off. ALL WITHOUT a definitive diagnosis. My head hurts often. Knees are stronger from pt but hurt like hell the next day.