Hello,
I too was diagnosed end of March of ‘22 following suspected Covid infection from march ‘21, with CSS (along with its bag of symptoms Fibromyalgia, brain fog, POTS, dysautonomia, post-exertion malaise (chronic fatigue, anxiety, sleeplessness, mcas, etc etc etc.
Due to my food (histamine loaded) and chemical sensitivity, I can’t tolerate any of the meds that help sometimes for folks.
After a year of trying to work and dealing with symptoms, I finally crashed, and had to quit working (along with many recreational activities) at age 58.
My ankles, Achilles and calf’s get really sore along with whole body of course, but I bought “plantar fasciitis boots” on Amazon that are like ski boot shells. They hold your ankles at a nice 90 degree angle…feels so good as I have hypermobility connective tissue issues and these take the strain off. Also have pneumatic leg massagers so I put my legs up on my wedge pillow (a must!) and let those cycle when my legs just don’t want to behave.
Massage, including Cranial release therapy, for me 2-3 week intervals as I can afford is great. I’ve tried float therapy and found that soothing.
I wear tinted glasses and noise reduction for ears if I’m in groups or public spaces. Usually avoid people now. I have a quick fuse to frustration now, never before.
Lucky to have some benefits and solid family support and spouse…I really feel extra sad for people trying to manage alone.
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?
Rachel, Volunteer Mentor | @rwinney | Mar 5 11:08am
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.
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.
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. I have been suffering for five years now for an intense abdominal pain that extends to my right side and my back. I have been to many doctors and have even been treated with fentanyl but nothing helped. The conclusion: I suffer from nociplastic pain due to central sensitization. I have not found any help and and am very tired and desperate as it affects my whole life as even drinking water and eating worsen the pain that reaches 10 in the scale every single day so I have lost much weight and I am undernourished at the moment. Wish there was someone to share and find support.
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 🙂
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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?
-
Like -
Helpful -
Hug
1 ReactionHi 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.
-
Like -
Helpful -
Hug
1 ReactionI 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 🙂