Yes Cheers !!
I am now in the process of having four crowns put on my teeth. I am so proud of myself it was a two hour appointment and I did not panic once and I feel so good about taking the steps to catch up with my dental care. I figure that I have to live twenty more years,then will make me ninety two in order to get my money’s worth lol . I can’t afford not to .😂
Hello @robert58 -- Welcome to Connect. Each of us is different when it comes to pain but I think you are correct. I have no medical training or background but have learned a person needs to be their own advocate and search for answers for what works for them. The more a person can educate themselves about their illness, the better questions they can ask their doctors and hopefully help them come up with a better treatment plan. With that said, there are a lot of people out there making money off of people in pain so that is another good reason to keep yourself informed.
For those not familiar with what you mentioned - Mayo's PRC treating Centralized Sensitization Syndrome, here are some links for more information:
Pain Rehabilitation Clinic (PRC) Testimonial - Mayo Clinic -- Patient Corey Plath explains about how chronic pain has impacted his life. Multiple concussions led to daily headaches then unimaginable pain. Corey found answers on how to handle this chronic pain when he visited Mayo Clinic's Pain Rehabilitation Clinic.
-- https://www.youtube.com/watch?v=bQsAKazyIIk
A key factor here is the word 'agency' - when the mind senses agency - control of destiny - pain levels have been shown to reduce and recovery can start. The body does follow belief enormously - not simply because it appears to do so blindly but simply because it is not party to the driver behind beliefs. It enacts the "ok to get moving now" beliefs faithfully. Research even shows that if we believe we live longer we will. Sounds fanciful but the mind operates as a prediction machine as its basic modus operandi. For example, when we reach out to grab our coffee, information moves in both directions along the arm. The brain is much more interested in errors in its prediction of arm movement than in the full sensory details. Placebo is the classic example of that predictive nature.
I watched the video that you recommended on Central Sensitization and at seventy two and have been told by my doctor that no one can help me learn to deal with it. So what is the sense of going to pain management? I can’t take a step without pain every where .Getting dressed to go to appointments is torture so is trying to lie down and rest. I am lost in a torture chamber. Watching a video that offers me no hope is not what I need.
This sounds unreasonably negative. The 'experts' are often not expert in the fullest sense. The gravity of what they know often constrains their vision. Read about pain and how the brain can get into pain habits long after a problem has healed. Learning to avoid catastrophising is a great first step - extrapolate from the pain you have now to a future with more pain will increase the pain you have now. In a sense, 'chilling' in spit of pain is ideal. I have had 3 decades of various pains and can testify to that.
Hello everyone. I have been suffering with Fibro for 21 years. I started taking Lyrica in 2011 and am now on 75 mgs 3x|day but it isn’t working well, prob bc I’ve developed a tolerance to it. I am allergic to Opioids so can’t take Tramadol. I progressed to Central Sensitization Syndrome 18 mos ago and now pain is so much worse that it is wearing down my Adrenals. Ive had POTS for a year and have to take Florinef and Pregnenolone to hold my BP up. For some reason any Cannabis blend that has THC in it makes my nerve pain worse, even if I take a tiny dose. But CBD helps; it does make me sleepy in the daytime so I just take it at bedtime. I have neck disk degeneration pain and post surgical pain from have some bone spurs scraped away in my neck bones, which is another source of pain. So I have reached a point that my pain level is more than I can bear, esp on weather change days. So I have been working hard to get into a Ketamine IV pain clinic and I will start the series of iv’s in 2.5 weeks. I had to have much blood Wk and get clearance letters from all my drs stating my liver is normal, my EKG is normal and my mental health is good. I will write bk to you all when I am able and tell you if the Ketamine (greatly diluted ofcourse) helps.
Please comment if there is anything you feel is important for me to know.
I woke this morning and spent some time reviewing what I posted. Since someone has taken an interest in me, I would like to add a couple of present medical problems that my doctors can’t or won’t respond to. I am chemically sensitive to all pharmaceutical drugs. I now have allergic reactions to a lot of natural foods that I didn’t have before that surgery. I can’t even use natural medications. I still have medical problems to deal with. Incurable ones. I have thyroid disease and I have to use a pharmaceutical med for that. There have been some very bad problems that have occurred when having to say go to my primary doctor. I had to recently change to a new one because he doesn’t understand Central Sensitization Syndrome even though I spent time trying to explain it to him. After spending my appointment time doing this, he said the stupidest thing to. “ So now you are desensitized”. What a waste of that time. The bad result of this happened when I had my annual blood test for the thyroid disease. It showed that the level was to high. So he adjusted the dosage. That adjustment probably wouldn’t have affected before that operation but it did this time. For me it was way too low and I reacted like someone just set me on fire. I am still trying to adjust to this level and it has been over 8 months. I dropped that doctor and started seeing a new one. This primary doctor, after finding out that I have Central Sensitization Syndrome and the very bad reaction to the thyroid medication, doesn’t want to deal with it. The last time I saw him he told me that he wants to let my neurologist deal with it. Stupid reasoning. Yes my neurologist went out of his way and spent sometime looking into this and had me take a couple more blood tests. When the results came back, they showed that I was in some kind of normal range and I didn’t need to see a endocrinologist. He explained that stress from having Central Sensitization Syndrome will affect my thyroid gland.The reality is I am still having problems because of that change. Since this affects my entire nervous system, I think you see my point. As of now I really can’t trust any doctor who isn’t familiar with Central Sensitization Syndrome. So here is my dilemma, if I have any kind of old or new medical situation, who do I see and where can I go to for help? I can’t prescribe meds for myself I am not a doctor and as far as I am concerned, they aren’t either. I am 71 and I will eventually start having more medical problems, Mother Nature will see to that. I have the neurologist who has been very helpful in dealing with my pain through injections. But that only lasts for awhile and I can barely live with that. The prospect of more pain is there. I will never be able to have any surgery. My reality sucks.
Positive I have css which was sent into overdrive by the covid vaccine. My food and medication sensitivities are similar to yours and it turned out to be histamine and mcas related. Css has an effect on your immune system as well bc histamine and serotonin are neurotransmitters and if elevated can cause mast cells to activate and release more histamine and serotonin as well as inflammatory cytokines and chemokines that make css worse and cause neurological, immune, and other problems. I have dysautonomia as well. I am 43 and have been disabled with all of this since I got the vaccine a year ago. I struggled with cfs and fibro for years but could still work and function. The vaccine completely ruined my life.
I have been having tremors in my hands for over a year. I have now started the internal tremors. Usually happens when I just get up from sleeping or when I go to bed at night. I have also been stumbling, falling and my balance is bad to the point my arms flail and I knock things off and spill things.
Someone on here mentioned Lymes Disease. About 10 years ago I had a tick bite that left a round raised area on my shoulder blade. My doctor is going to check me for that too. My blood work is normal,
Mcas is like lyme and elevated histamine and serotonin cause mast cells to activate and release more histamine and serotonin as well as inflammatory cytokines and chemokines. Vicious cycle with lots of horrible effects. I have css, mcas, fibro, cfs, and severe sensory, neurological, cognitive, immune, and dysautonomia. Completely disabled with all of it since the covid vaccine. Had the fibro and cfs before and could still function, the rest was all the effects/trigger of the vaccine.
I have just read about this. I am trying out diverting my thoughts about pain (10years,back). I am attempting to reduce Percocet I have used because a fusion and epidural s have not helped. I hope this will help as I'll probably have central desensitization
I would like to know even more.
I have just read about this. I am trying out diverting my thoughts about pain (10years,back). I am attempting to reduce Percocet I have used because a fusion and epidural s have not helped. I hope this will help as I'll probably have central desensitization
I would like to know even more.
Hello @tyyne21wigwam - Good for you for thinking outside of the box and looking at ways you can help yourself manage your condition. Learning about Central Sensitization Syndrome (CSS) can be helpful and validating when trying to understand the "why behind the what". After acute problems are fixed or attempted to be fixed and 3 - 6 months later there remains pain and symptoms, unfortunately chronic sets in - as you 10 years later have dealt with.
Here is an amazing CSS video by Mayo Clinic's Dr. Christopher Sletten who teaches at Mayo's pain rehab center in FL:
Central Sensitization Syndrome - Dr. Christopher Sletten -
I graduated the PRC and worked with Dr. Sletten a couple of years ago. Please ask away if you have any questions about CSS or the program. I'm happy to help.
Here are CSS discussions you may like to look over and learn from:
Central Sensitization - please share your stories -
Also, recently, members like @angieleigh, @westcom and @berniep have discussed Dr. John Sarno, his books and podcasts as being helpful for chronic issues. Take a look:
I hope you find motivation and inspiration to continue your quest of learning about CSS and using diversion to quell your pain. Kudos to you for self advocating! What types of tools have you currently been using?
Have you discovered benefits of diaphragmatic breathing or mindful mediation yet?
Yes, I was diagnosed with Central Pain Amplification about 2 months ago. The pain is very intense and random. It hurts more when I use a certain part of the body. I also have 2 torn rotator cuffs. One did not heal completely after surgery and pt last May. So, I also have that pain. I’m on medications. Just started cannabis gummies. Low dose. We’ll see. I try to stay positive: mediate, breathing apps, walking, and meeting with friends.
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That's the spirit! 💪🏼💪🏼💪🏼
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2 Reactions@rachael1357 How are you doing with breathing and meditation? Have you looked into them yet?
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1 ReactionA key factor here is the word 'agency' - when the mind senses agency - control of destiny - pain levels have been shown to reduce and recovery can start. The body does follow belief enormously - not simply because it appears to do so blindly but simply because it is not party to the driver behind beliefs. It enacts the "ok to get moving now" beliefs faithfully. Research even shows that if we believe we live longer we will. Sounds fanciful but the mind operates as a prediction machine as its basic modus operandi. For example, when we reach out to grab our coffee, information moves in both directions along the arm. The brain is much more interested in errors in its prediction of arm movement than in the full sensory details. Placebo is the classic example of that predictive nature.
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Helpful -
Hug
5 ReactionsThis sounds unreasonably negative. The 'experts' are often not expert in the fullest sense. The gravity of what they know often constrains their vision. Read about pain and how the brain can get into pain habits long after a problem has healed. Learning to avoid catastrophising is a great first step - extrapolate from the pain you have now to a future with more pain will increase the pain you have now. In a sense, 'chilling' in spit of pain is ideal. I have had 3 decades of various pains and can testify to that.
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Helpful -
Hug
1 ReactionDo you have DISH? Wondered since you mentioned bone spurs...
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1 ReactionPositive I have css which was sent into overdrive by the covid vaccine. My food and medication sensitivities are similar to yours and it turned out to be histamine and mcas related. Css has an effect on your immune system as well bc histamine and serotonin are neurotransmitters and if elevated can cause mast cells to activate and release more histamine and serotonin as well as inflammatory cytokines and chemokines that make css worse and cause neurological, immune, and other problems. I have dysautonomia as well. I am 43 and have been disabled with all of this since I got the vaccine a year ago. I struggled with cfs and fibro for years but could still work and function. The vaccine completely ruined my life.
-
Like -
Helpful -
Hug
4 ReactionsMcas is like lyme and elevated histamine and serotonin cause mast cells to activate and release more histamine and serotonin as well as inflammatory cytokines and chemokines. Vicious cycle with lots of horrible effects. I have css, mcas, fibro, cfs, and severe sensory, neurological, cognitive, immune, and dysautonomia. Completely disabled with all of it since the covid vaccine. Had the fibro and cfs before and could still function, the rest was all the effects/trigger of the vaccine.
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Like -
Helpful -
Hug
2 ReactionsI have just read about this. I am trying out diverting my thoughts about pain (10years,back). I am attempting to reduce Percocet I have used because a fusion and epidural s have not helped. I hope this will help as I'll probably have central desensitization
I would like to know even more.
Hello @tyyne21wigwam - Good for you for thinking outside of the box and looking at ways you can help yourself manage your condition. Learning about Central Sensitization Syndrome (CSS) can be helpful and validating when trying to understand the "why behind the what". After acute problems are fixed or attempted to be fixed and 3 - 6 months later there remains pain and symptoms, unfortunately chronic sets in - as you 10 years later have dealt with.
Here is an amazing CSS video by Mayo Clinic's Dr. Christopher Sletten who teaches at Mayo's pain rehab center in FL:
Central Sensitization Syndrome - Dr. Christopher Sletten -
I graduated the PRC and worked with Dr. Sletten a couple of years ago. Please ask away if you have any questions about CSS or the program. I'm happy to help.
Here are CSS discussions you may like to look over and learn from:
Central Sensitization - please share your stories -
- https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories/
Mayo Pain Rehab Program -
- https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/
Also, recently, members like @angieleigh, @westcom and @berniep have discussed Dr. John Sarno, his books and podcasts as being helpful for chronic issues. Take a look:
Tension Myositis Syndrome: What helped you?
- https://connect.mayoclinic.org/discussion/tms-1/
I hope you find motivation and inspiration to continue your quest of learning about CSS and using diversion to quell your pain. Kudos to you for self advocating! What types of tools have you currently been using?
Have you discovered benefits of diaphragmatic breathing or mindful mediation yet?
-
Like -
Helpful -
Hug
3 ReactionsYes, I was diagnosed with Central Pain Amplification about 2 months ago. The pain is very intense and random. It hurts more when I use a certain part of the body. I also have 2 torn rotator cuffs. One did not heal completely after surgery and pt last May. So, I also have that pain. I’m on medications. Just started cannabis gummies. Low dose. We’ll see. I try to stay positive: mediate, breathing apps, walking, and meeting with friends.
-
Like -
Helpful -
Hug
1 Reaction