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 | 16 hours ago
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?
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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?