Anyone else has been diagnosed with central sensitization syndrome?

Hi @glemahieu, welcome to Connect. Sorry to hear about your central sensitization diagnosis. What a gift it is for you to have a good support system in your family.

I'm familiar and have been diagnosed with CSS as well. I commend you for trying to persevere through working, and very much understand the struggle not only symptom-wise but with the frustration that comes with having to reshape expectations.

Have you by chance watched the Mayo Clinic video by Dr. Sletten about Central Sensitization Syndrome and the Pain Rehab Center?

Hi all who may be visiting this thread about Central Sensitization Syndrome. I've recently commented to @glemahieu and am hopeful he will check back in to soon for this exciting news for everyone.

I'm please to share that Connect welcomes a new blog from Mayo Clinic's Pain Rehabilitation Center in Jacksonville, Florida all about Central Sensitization Syndrome and Rehabilitation.

Please see here:

- https://connect.mayoclinic.org/blog/chronic-pain-symptoms-rehabilitation/

The blog has been a long time coming and is important for those who want to understand more about CSS and how to move forward while living with it. Dr Sletten and his crew are amazing and have changed many people's lives .

Keep a watchful eye for blog updates and educational information that will be helpful to those who are unsure of what CSS is, who are navigating present symptoms and may be confused, or are diagnosed and are looking for a positive path forward in learning to live a better quality life while being faced with the challenges of CSS.

I graduated the PRC four years ago and understand the complexity of CSS having lived with it for about 10 years now. It would be great to hear any feedback or questions you may have.

How are you presently managing symptoms? Have you been formally diagnosed?

This disease is terrible. I have nerve pain head to toe. I can't sit long because just the compression from sitting causes all the nerves in my spine to hurt and then the pain travels to my arms, legs, eyes, throat, and everywhere. All of my joints are hurting too. My shoulders are so bad now that I can't lift my arms above my head. I struggle to lift a glass of water. I was on Nortriptyline, Gabapentin, and Lyrica, but they stopped working a few months ago and now it's getting progressively worse. I don't know what to do.

I have had symptoms most of my life but in the past decade this condition has spun out of control.
I'm a 66 year old female living alone with no support in that area which makes it difficult.. I am very knowledgeable on this topic and would like to find someone willing to be a mutual support buddy.

Anyone out there want to connect?
Thanks

Hello..
I have a lot of insight on this if you would like a support friend.

Hi..
I just joined and am open to sharing/lending support. I have much insight.
I too struggle to keep weight on, also have digestive issues as well as other symptoms.
Please reach out if you'd like 🙂

Yes, diagnosed with central sensitization in 2014, following years of occipital neuralgia migraines, fibromyalgia, extreme anxiety, bruxism, burning mouth syndrome, shooting electric zaps and burning itching skin that scratching doesn't help too much, pudendal neuralgia following a very difficult childbirth. Depression.
Recent diagnosis of idiopathic small fiber polyneuropathy.

Yesterday I had my first hyperbaric oxygen chamber treatment and woke up feeling less doom, less burning/itching, less deep ache. Not gone but markedly less.

I'm hopeful to think that MAYBE I've found an answer. Maybe.

Yes, have this CSS diagnosis. Also occipital neuralgia with migraines, fibromyalgia and full body idiopathic small fiber polyneuropathy. Have tried so many things to help, but doctors are clueless.
For years before the diagnosis and even after, doctors still thought I was making up the symptoms. I'm autistic and don't like any type of attention, especially from doctors, am just desperate not to hurt, burn, itch anymore. I want the nonstop anxiety and sensory hypersensitivities to end.

Tried craniosacral therapy and facial manipulation, which seemed to help for about a day. Acupuncture made it worse. Chiropractic didnt hrlp.

Yesterday I had the first of many hyperbaric oxygen therapy appointments, immediately noticed my brain felt more alert and "awake." This morning I awoke with no migraine or feeling of doom. I didnt have to run to bathroom due to bladder spastic urgency, noticed I had not awakened like i usually do 2-3 times a night for race to bathroom.

Things weren't completely gone, still had some burning and itching everywhere, just not as urgent, aching shoulders, jaws, just not as severe.

I'm very optimistic. Looking forward to doing this again soon.

Am also looking into Spravato intranasal spray.