Anyone else has been diagnosed with central sensitization syndrome?

@paininthescap glad you mentioned trigger point injections and dry needling. I had bad reactions (pain) to lidocaine injections. The worst was on the bottom of my scalp for occipital neuralgia. The result was intense pain in scalp, down neck, shoulder, arm, side of back and around to ribs- all on the left side. I thought I was dying with the pressure and pain in chest.

Nice MD tried injecting very tight muscle knots in shoulder blade and pain increased a lot. He was disheartened- expected it to help.

I have had doctors say "Can't think of why that would happen" when I describe the spread of pain throughout the left side of my body as well as up and down my entire spine.

PT is afraid of my fragility and does massage, the one thing that helps- but only while it is going on.

I cannot take NSAID's due to kidneys. I am giving up on neuro and going to pain mgmt. I finally got a diagnosis of centralization after years of wondering, though I have had central migraine and central vertigo on my record for a long time.

Sorry for your pain!

OMG! I am reminded by your situation that I’m not alone. I didn’t mention it but I have tried every known pain meds and truthfully, nothing helped. Not the Belbuca, Oxycodon, Fentynal and the list goes on. I have run through almost every other treatment and nerve blocks including nerve ablation. Because I failed the nerve block twice, I was not allowed to try an implant. There is one thing I do want to share that has come up twice this year. The off-label use of Naltrexone is said to work miracles for some chronic pain. Because this is the drug of choice to help addicts break the cycle of alcohol and drugs, it can not be used in connection with any opioid. Research it thoroughly and discuss it with your current doctor before going to pain management. Please note, my pain is too horrible to go 4 to 7 days with nothing but advil and a muscle relaxer, so I couldn’t try it. I did try and went 48 hours and literally would rather have died then to be in that much pain. My PM docs have ZERO experience with Naltrexone and left it up to me to research with no assistance. I’m a great researcher but for off-label use, I really need an informed and experienced doctor. You’ll see videos were the physicians will approach long term chronic pain being treated with opioids differently. So just make the best informed decision for you. FYI: You’ll see the off-label usage for a very long list of illnesses. This drug has been around since the 1960’s and approved in the 1980’s, but there hasn’t been meaningful research on chronic pain to date. If you try it and it works, please let me know. Hang in there, this is not fun, but I will suffer here in this life, to free my soul for a high vibration and better life out of this very flimsy body.

I have read about Naltrexone. Thank you I will pursue discussion with MD.

What muscle relaxer do you use? Klonopin seems to be the only thing I tolerate.

I was diagnosed with central sensitization at Mayo last August - this pain is horrible and I wouldn’t wish it on anyone! The doctors at Mayo recommended this book, which explains how your brain is sending the wrong signals to your body, which is why you feel pain. When this happens, pain medication is pretty much ineffective. The most effective treatment is to retrain your brain to send the correct signals so that your body goes out of fight or flight mode. This book was strongly recommended to understand what is happening with your brain and body. Cognitive Behavorial Therapy is strongly recommended to help retrain your brain. I have been doing this for almost a year now and would say that I am 90% better than I was last year at this time. I also have links to videos/etc that Mayo provided. Please let me know if interested and I am happy to share.

Explain Pain by David Butler - sorry, I tried to include the cover of the book, but it may not have gone through.

The term central sensitization and Allodynia have been used interchangeably by the many doctors and therapist I have seen over the past 16+ years of pure misery. Unfortunately, the truth is there is no known cure and all of the research ended confirming that fact. Depending on your current pain level, I caution you to tread lightly and ask a lot of questions before starting any new therapy, including physical and medications. The very worst things I did over the first decade were trigger point injections, Botox and dry needling. Nerves are quite funny about being poked repeatedly. Lastly, try your very best to avoid NSAIDS. Early in my pain management care, the doctor prescribed 800mg ibuprofen pills, I then just bought Advil in the 300 quantity cheaper. I started with 2400 mg a day or 3 pills and I now take no less than 40 200mg pills every 24 hours just to try managing the related inflammation. I have had four heart stints in three years in my LAD due to the Advil. Though I have been 100% asymptomatic for heart issues, it got caught the first time because I was upset my blood pressure elevated slightly and I insisted on pursuing a cause. The first blockage was 95%, with the second going from zero to 90+% in two years and the last two stints took the surgeon 2.5 hours to clear 90% and 70% blockages. My pain increased exponentially after laying on that table across my pain center in my scapula and has never come down. In fact, it just increased again without warning or a cause. There was never an injury or known trauma that caused my pain, yet it has increased to levels I would never imagine humanly possible to sustain 24 hours a day. Add the ridiculous skin sensitivity to everything and you can’t imagine what true physical and mental horror can look like. Be your own advocate and never accept No when your heart and mind say something else. I pray you find relief soon and never get to where I am today. P.S. The thing that also saved my life is that I self pay for all my health care. It gives me full control over my health care without limitations by insurance companies.

I was diagnosed with central sensitization at Mayo last August - this pain is horrible and I wouldn’t wish it on anyone! The doctors at Mayo recommended this book, which explains how your brain is sending the wrong signals to your body, which is why you feel pain. When this happens, pain medication is pretty much ineffective. The most effective treatment is to retrain your brain to send the correct signals so that your body goes out of fight or flight mode. This book was strongly recommended to understand what is happening with your brain and body. Cognitive Behavorial Therapy is strongly recommended to help retrain your brain. I have been doing this for almost a year now and would say that I am 90% better than I was last year at this time. I also have links to videos/etc that Mayo provided. Please let me know if interested and I am happy to share.