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 have central sensation and my pain level is thought the roof at the min in my feet to the point I’m stuck in bed will this pass or is this something that won’t go
I have central sensation and my pain level is thought the roof at the min in my feet to the point I’m stuck in bed will this pass or is this something that won’t go
I am so sorry. I too have CSS/fibromyalgis. I spent all last summer on my bed with big pillows under my knees so that my feet could just dangle, because I couldn’t stand to have anything touch them, much less walk. I am now taking gabapentin (200mg 3X per day) and while I always have some level of pain in my hands and feet, it is much more manageable.
I have central sensation and my pain level is thought the roof at the min in my feet to the point I’m stuck in bed will this pass or is this something that won’t go
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.
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.
@glemahieu
Just reading your comment, any chance you have EDS? Ehlers-Danlos syndrome? I do, hEDS. Looking into your dx as well as I’m still looking for answers
I have seen the videos explaining CSS, but I haven't read anything about how to deal with it. I know it's not purely psychological, but there must be ways of dealing with it. Any suggestions, fellow commenters?
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.
I have seen the videos explaining CSS, but I haven't read anything about how to deal with it. I know it's not purely psychological, but there must be ways of dealing with it. Any suggestions, fellow commenters?
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.
I have central sensation and my pain level is thought the roof at the min in my feet to the point I’m stuck in bed will this pass or is this something that won’t go
I am so sorry to hear this! Sadly, I’m not qualified to confirm if it will or not, however, the sooner you start working on desensitizing, the better you may be long term. Rolling a tennis ball or anything that you can easily control for a minute or so each time, repeating it several times daily, may help break that extreme sensitivity. I strongly recommend you keep moving as much as possible. The human body is designed for movement and to stay still can cause much more serious problems like blood clots, bed sores, and isolation. Medical science isn’t perfect, so take an aggressive approach to your health management and fight one minute at a time. Just keep moving and donor surrender to the pain.
Yes, I was recently diagnosed but have had pain for many years. I take Gabapentin & Duolexitine. I just completed the 3 week PRC program at the Mayo Clinic. I have just returned to work & my immune system was affecting me. Singles, COVID, etc. I am managing but the program was excellent.
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I have central sensation and my pain level is thought the roof at the min in my feet to the point I’m stuck in bed will this pass or is this something that won’t go
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1 ReactionI am so sorry. I too have CSS/fibromyalgis. I spent all last summer on my bed with big pillows under my knees so that my feet could just dangle, because I couldn’t stand to have anything touch them, much less walk. I am now taking gabapentin (200mg 3X per day) and while I always have some level of pain in my hands and feet, it is much more manageable.
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.
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3 Reactions@glemahieu
Just reading your comment, any chance you have EDS? Ehlers-Danlos syndrome? I do, hEDS. Looking into your dx as well as I’m still looking for answers
I have seen the videos explaining CSS, but I haven't read anything about how to deal with it. I know it's not purely psychological, but there must be ways of dealing with it. Any suggestions, fellow commenters?
-
Like -
Helpful -
Hug
1 ReactionI 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.
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4 Reactions@rwinney started a discussion where members have shared some suggestions that helped them. It's related to the holidays but I think it still may be helpful.
-- Holiday Sensory Overload: How do you manage?
https://connect.mayoclinic.org/discussion/holiday-sensory-overload-how-do-you-manage/
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1 ReactionWelcome @fganen, You are not alone. There is another discussion on the topic that you might find helpful:
-- Right mid abdominal and Back Pain: https://connect.mayoclinic.org/discussion/right-mid-abdominal-and-back-pain/
Here's an article that talks about the symptoms:
-- Abdominal Pain - Unexplained: https://www.cedars-sinai.org/health-library/diseases-and-conditions/a/abdominal-pain---unexplained.html
Have you thought about seeking help or second opinion at a teaching hospital or major health facility like Mayo Clinic?
I am so sorry to hear this! Sadly, I’m not qualified to confirm if it will or not, however, the sooner you start working on desensitizing, the better you may be long term. Rolling a tennis ball or anything that you can easily control for a minute or so each time, repeating it several times daily, may help break that extreme sensitivity. I strongly recommend you keep moving as much as possible. The human body is designed for movement and to stay still can cause much more serious problems like blood clots, bed sores, and isolation. Medical science isn’t perfect, so take an aggressive approach to your health management and fight one minute at a time. Just keep moving and donor surrender to the pain.
Yes, I was recently diagnosed but have had pain for many years. I take Gabapentin & Duolexitine. I just completed the 3 week PRC program at the Mayo Clinic. I have just returned to work & my immune system was affecting me. Singles, COVID, etc. I am managing but the program was excellent.