Has anyone been diagnosed with Central Pain Amplification?

Posted by sue15 @sue15, May 21, 2024

I’m diagnosed with Central Pain Amplification. First symptom was flare ups in hands/arms. Then a stiff knee joint. Then pain throughout the body and muscle/tissue atrophy. The flare ups are when I am having pain. I get all hot. I believe there is more than a neurological disorder going on? Doctors have been no help. They don’t believe me about wasting away even though I show them and tell them how weak I am. I need more testing. Nerve conduction tests over 2-3 years ago. Anyone else experience flareups?

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Profile picture for anniesezu812 @anniesezu812

@anniesezu812
Im not sure im doing PM correctly, so this is on public forum, no matter. Central pain syndrome is usually the diagnosis after a stroke or a spinal cord ' something ', stroke etc.
CRPS is usually is reserved for a limb injury and results from ultimate pain out of proportion to the injury. Due your knee ( a limb) i would have thought CRPS more correct diagnosis.
I guess my diagnosis came from my symptoms . My injury was abdominal, not a limb however. It was a small abdominal wall tear, that medics ignored for 6 yrs. Lord knows why. I was wheelchair bound, couldn't eat, digestive system became agony. lost 30 lbs to 78lbs. Couldn't walk , looked 7 months pregnant....6 yrs later got laparoscopy to repair. Finger tip excruciating pain at injury site never left. Recently im told they believe the injury was so long without attention it has irritated Celiac ( solar Plexus) . That's a large bundle of nerves sitting near aorta.
CRPS gets worse overtime usually. My CRPS and Celiac Plexus pain / add in Stimulator irritating nerves add up to a WORLD OF PAIN !! So that's the long version of how I was diagnosed with CRPS, but like you I think there is more going on. I've experienced if you're a difficult cases its a RARE Dr who is interested....no time to figure us out. Not sure this helps but that's my story! Very long...sorry.
PS are you the lady who wrote she sometimes feels she's dying?...cuz I do too. I mean it sincerely. I sent all my details to overseas friends not expecting to survive some terrible nerve flare ups. Its a terrifying feeling. I take xanex to help me cope... and yes I am weaker. Obviously some central nervous system issues.
Have you heard of TMS...Dr Sarno?
I think most chronic pain sufferes have an element of TMS to their condition.

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@anniesezu812 you can PM or write on this forum any time. It also may help someone.

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Profile picture for sue15 @sue15

@anniesezu812 you can PM or write on this forum any time. It also may help someone.

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@sue15 Your Welcome. Anything to help. I have been poorly treated by many Drs.
Yes Xanex is a prescription anxiety drug. It is well understood by IBS sufferers ( me , resulting from abdominal trauma) to ease abdominal pain...it is not accepted by Drs as a pain reliever, however since it calms brain nerves, its obvious ( to me at least) it calms nerves in the gut and spine.
When i get a bad spine flare up,( all are post Stimulator,) it almost immediately eases the flare up which is a frightening/ blood curling pain...I dont think I would be alive without the xanex to calm me of these extreme pain episodes. Drs are reluctant to prescribe it but I argue if it helps one endure severe pain its needed. So far im allowed to continue with it.
I dont think I could endure my life without. I'm on a low dose.
Yes pls Google TMS . It makes a lot of sense. Hope you find this useful. Let us know how you progress!!

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Profile picture for anniesezu812 @anniesezu812

@anniesezu812
Im not sure im doing PM correctly, so this is on public forum, no matter. Central pain syndrome is usually the diagnosis after a stroke or a spinal cord ' something ', stroke etc.
CRPS is usually is reserved for a limb injury and results from ultimate pain out of proportion to the injury. Due your knee ( a limb) i would have thought CRPS more correct diagnosis.
I guess my diagnosis came from my symptoms . My injury was abdominal, not a limb however. It was a small abdominal wall tear, that medics ignored for 6 yrs. Lord knows why. I was wheelchair bound, couldn't eat, digestive system became agony. lost 30 lbs to 78lbs. Couldn't walk , looked 7 months pregnant....6 yrs later got laparoscopy to repair. Finger tip excruciating pain at injury site never left. Recently im told they believe the injury was so long without attention it has irritated Celiac ( solar Plexus) . That's a large bundle of nerves sitting near aorta.
CRPS gets worse overtime usually. My CRPS and Celiac Plexus pain / add in Stimulator irritating nerves add up to a WORLD OF PAIN !! So that's the long version of how I was diagnosed with CRPS, but like you I think there is more going on. I've experienced if you're a difficult cases its a RARE Dr who is interested....no time to figure us out. Not sure this helps but that's my story! Very long...sorry.
PS are you the lady who wrote she sometimes feels she's dying?...cuz I do too. I mean it sincerely. I sent all my details to overseas friends not expecting to survive some terrible nerve flare ups. Its a terrifying feeling. I take xanex to help me cope... and yes I am weaker. Obviously some central nervous system issues.
Have you heard of TMS...Dr Sarno?
I think most chronic pain sufferes have an element of TMS to their condition.

Jump to this post

@anniesezu812
I’m so glad you have TMS, Xanax, and anything else to help you and your pain. Do you have some family/friends’ support? My sister makes me laugh (lives in different state) so much it is good therapy. It is so hard to accept that in 2025 doctors can still not be able to diagnose chronic pain illnesses. I’ll try and figure out PM so we can do that👍🏻🙏.

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Profile picture for sue15 @sue15

@anniesezu812
I’m so glad you have TMS, Xanax, and anything else to help you and your pain. Do you have some family/friends’ support? My sister makes me laugh (lives in different state) so much it is good therapy. It is so hard to accept that in 2025 doctors can still not be able to diagnose chronic pain illnesses. I’ll try and figure out PM so we can do that👍🏻🙏.

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@sue15 Hello again. I tried to hit on your name @sue15 ..it says hide..I wonder if it will work...how will we know.
I don't have a GOOD support system, im from Europe, no relatives here at all...but I have a ' loose' support system via Church.
It would be lovely if we could pm or email privately.
Friends/ family who aren't in chronic pain cant really understand, even if they try to.
Hopefully this ends up privately. If not i'll check with moderator. Be happy!!

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Profile picture for heisenberg34 @heisenberg34

I would certainly be up for doing daily exercises if I could be assured they were actually helping me. Whenever I am doing any kind of exercises, my pain level ramps up even more. I would love to walk, but every step I take is excruciating. Very unpleasant. Maybe medical marijuana would help. Who knows. Five years ago I was skiing, biking 40 to 50 miles a week, etc. Now, I'm lucky to get 300 steps in a day. May you all have a blessed day!

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@heisenberg34
I completely understand. I got the initial two doses of the Covid vaccine and 89 days after the second shot, I went down and have never gotten “back” up. To me. I was a high functioning staff accountant. My doctor doesn’t know what to do with me. It’s so frustrating diagnosing myself, but at this point, I’m doing a better job at it than my physicians. I have fibro, DDD, chronic pain and fatigue, and the list goes on. The onset? The Covid vaccine triggered whatever was laying dormant in my body, and I will fight for an anecdote until the day I die, until then I fight as hard as I possibly can. Best wishes and gentle hugs. Research, research, research, and try supplements. They are so expensive, but anything that works is so expensive. But for me, it’s quality of life and if I have to go into debt over it, I will. I’m only 55. I shouldn’t feel like I’m 90. I don’t drink I don’t smoke. Medical marijuana does help occasionally. I just ordered four different supplements from a company, will start when they get here, pray on it until they do, and I promise a report back. Have a great day.

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Profile picture for anniesezu812 @anniesezu812

@anniesezu812
Im not sure im doing PM correctly, so this is on public forum, no matter. Central pain syndrome is usually the diagnosis after a stroke or a spinal cord ' something ', stroke etc.
CRPS is usually is reserved for a limb injury and results from ultimate pain out of proportion to the injury. Due your knee ( a limb) i would have thought CRPS more correct diagnosis.
I guess my diagnosis came from my symptoms . My injury was abdominal, not a limb however. It was a small abdominal wall tear, that medics ignored for 6 yrs. Lord knows why. I was wheelchair bound, couldn't eat, digestive system became agony. lost 30 lbs to 78lbs. Couldn't walk , looked 7 months pregnant....6 yrs later got laparoscopy to repair. Finger tip excruciating pain at injury site never left. Recently im told they believe the injury was so long without attention it has irritated Celiac ( solar Plexus) . That's a large bundle of nerves sitting near aorta.
CRPS gets worse overtime usually. My CRPS and Celiac Plexus pain / add in Stimulator irritating nerves add up to a WORLD OF PAIN !! So that's the long version of how I was diagnosed with CRPS, but like you I think there is more going on. I've experienced if you're a difficult cases its a RARE Dr who is interested....no time to figure us out. Not sure this helps but that's my story! Very long...sorry.
PS are you the lady who wrote she sometimes feels she's dying?...cuz I do too. I mean it sincerely. I sent all my details to overseas friends not expecting to survive some terrible nerve flare ups. Its a terrifying feeling. I take xanex to help me cope... and yes I am weaker. Obviously some central nervous system issues.
Have you heard of TMS...Dr Sarno?
I think most chronic pain sufferes have an element of TMS to their condition.

Jump to this post

@anniesezu812 I agree doctors don’t want to take the time with their patients to HEAR them. That’s why I research on my own has helped me more than talking to 17 different doctors. I’m exaggerating. But like how many times do I have to tell my story over and over to get someone to listen to me. I know my body better than them. But they just won’t take the time. My primary care doctor I have been with over 30 years. He listens to me, he trusts me he knows I do my research and due diligence before I bring anything to him. I have a log, and a journal for keeping up with how I feel daily. Gentle hugs and best wishes.

REPLY
Profile picture for canfitzpatrick @canfitz1970

@anniesezu812 I agree doctors don’t want to take the time with their patients to HEAR them. That’s why I research on my own has helped me more than talking to 17 different doctors. I’m exaggerating. But like how many times do I have to tell my story over and over to get someone to listen to me. I know my body better than them. But they just won’t take the time. My primary care doctor I have been with over 30 years. He listens to me, he trusts me he knows I do my research and due diligence before I bring anything to him. I have a log, and a journal for keeping up with how I feel daily. Gentle hugs and best wishes.

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Im in a similar position. I solve my problems better than the Drs but its hard to get them to listen. I had a SCS, now removed but my health has nose dived since that awful device.
My pain levels are excruciating and my meds no longer helping. Where to turn next ....living soo hard but I refuse to give up.
I think I have centralized nerve syndrome...its debilitating/ pain so debilitating.
Wishing us both luck 🙏

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Profile picture for anniesezu812 @anniesezu812

Im in a similar position. I solve my problems better than the Drs but its hard to get them to listen. I had a SCS, now removed but my health has nose dived since that awful device.
My pain levels are excruciating and my meds no longer helping. Where to turn next ....living soo hard but I refuse to give up.
I think I have centralized nerve syndrome...its debilitating/ pain so debilitating.
Wishing us both luck 🙏

Jump to this post

@anniesezu812 Oh, I feel so bad for you. How come the medical field can’t help us? I had a bad day recently and everything hurt. I just cried, put creams on, and laid down with the heating pad. My little dog Toby brings me comfort 🙏🐶.

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Profile picture for sue15 @sue15

Could you share your symptoms from Central Pain Amplification? I have serious flareups, hot/cold body temps, and serious pain in different parts of my body. I have gotten weaker all over in the past 5 years. I see a GP, pain specialist, orthopedic, rheumatologist, counselor, etc. No on can explain the pain. I feel there is a more definitive diagnosis. Appreciate any of your comments. Thank you.

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Has anyone tried the new drug for pain, Journavx? It is very expensive and you can only use it for 2 weeks.
It is not an opiod or NSAID.
Marlie

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Profile picture for yram @yram

Has anyone tried the new drug for pain, Journavx? It is very expensive and you can only use it for 2 weeks.
It is not an opiod or NSAID.
Marlie

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@yram I was able to get a trial prescription for two weeks. It did nothing for my severe, neuropathic pain. Hope this helps you.

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