Yes, I was recently diagnosed with it. I have found that all of my doctors have no idea about it, so it has been difficult for treatment purposes other than take more medications.
Yep! I have Fibromyalgia & CFS. A lot of doctors are not tuned into how the brain misfires with fibro and the sensitivity that we have to so many things.
I have found that I get more encouragement from others that battle this than doctors.
Praying for you as you learn to adjust. Doesn't it help you though to absorb this better when you get a name for what's going on with you. It did me. God Bless You as you absorb this.
Is this when your chonic symptoms cannot be treated with acute measures anymore due to your brain signaling your nerves that the pain is still ongoing? I just saw a video that seemed like that was the topic. It's all very confusing.
Yes, I was diagnosed with this, possible fibromyalgia and autonomic dysfunction. There's a lot of overlap in symptoms. Treatment is hit or miss according to the physical medicine dr. I saw. He said you try all of the options and maybe some of them accumulate for a percentage of relief. I am still experimenting though. I hope you find some answers too!
Yes, I was recently diagnosed with it. I have found that all of my doctors have no idea about it, so it has been difficult for treatment purposes other than take more medications.
Hi @ashley3764, welcome to Connect. I'm sorry you've been recently diagnosed with CSS . It's a lot to process at first, but can definitely be better managed once understanding the syndrome and learning self-help tools. Sadly, taking more medications is not the quick fix you may hope for.
Have you begun educating yourself about CSS yet? Knowledge is power and so is self advocacy. @dlydailyhope provided a few helpful links in a previous post . Have you had the chance to take a look yet?
You are right, none of my doctors had a clue about CSS either. I understand how frustrating that is. May I ask what type of doctor determined CSS was your diagnosis? Did did they have recommendations for management?
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.
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.
@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.
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Yes I have been diagnosed with it, and it solved some very long term mysteries for me. How about you @ashley3764 ?
Yes, I was recently diagnosed with it. I have found that all of my doctors have no idea about it, so it has been difficult for treatment purposes other than take more medications.
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1 ReactionYep! I have Fibromyalgia & CFS. A lot of doctors are not tuned into how the brain misfires with fibro and the sensitivity that we have to so many things.
I have found that I get more encouragement from others that battle this than doctors.
Praying for you as you learn to adjust. Doesn't it help you though to absorb this better when you get a name for what's going on with you. It did me. God Bless You as you absorb this.
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Hug
8 Reactions@ashley3764
Here is some information about your diagnosis.
1.
2.
https://mcpress.mayoclinic.org/living-well/what-is-central-sensitization-and-how-does-it-relate-to-pain/
3.
https://www.verywellhealth.com/central-sensitivity-syndromes-716160
Pray you get the support you need.
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4 ReactionsIs this when your chonic symptoms cannot be treated with acute measures anymore due to your brain signaling your nerves that the pain is still ongoing? I just saw a video that seemed like that was the topic. It's all very confusing.
-
Like -
Helpful -
Hug
2 ReactionsYes, I was diagnosed with this, possible fibromyalgia and autonomic dysfunction. There's a lot of overlap in symptoms. Treatment is hit or miss according to the physical medicine dr. I saw. He said you try all of the options and maybe some of them accumulate for a percentage of relief. I am still experimenting though. I hope you find some answers too!
-
Like -
Helpful -
Hug
2 ReactionsHi @ashley3764, welcome to Connect. I'm sorry you've been recently diagnosed with CSS . It's a lot to process at first, but can definitely be better managed once understanding the syndrome and learning self-help tools. Sadly, taking more medications is not the quick fix you may hope for.
Have you begun educating yourself about CSS yet? Knowledge is power and so is self advocacy. @dlydailyhope provided a few helpful links in a previous post . Have you had the chance to take a look yet?
You are right, none of my doctors had a clue about CSS either. I understand how frustrating that is. May I ask what type of doctor determined CSS was your diagnosis? Did did they have recommendations for management?
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Like -
Helpful -
Hug
7 ReactionsHi, Ashley - checking back in to see how you are doing since being diagnosed with CSS?
I found this recent discussion that you may find helpful:
Central Sensitization Syndrome and Treatment:
https://connect.mayoclinic.org/discussion/central-sensitization-syndrome-and-treatment/
Meet @darby413 who discusses having CSS, also. My reply in the link below includes 2 more discussions relating to managing CSS:
https://connect.mayoclinic.org/comment/1043858/
I hope you find these helpful. Have you begun a management plan yet?
Best wishes for a peaceful and happy day!
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2 ReactionsThe 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.
-
Like -
Helpful -
Hug
1 Reaction@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!
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Helpful -
Hug
1 Reaction