Want to talk with others. Have you found relief from CRPS?

Posted by mam14 @mam14, Feb 4, 2019

I was diagnosed with complex regional pain syndrome a year ago. It has since spread and I am experiencing a decline in my health at an alarming rate. I am hoping to talk to others that may have found relief.

@sprinrosa64

Well I believe I have it. One doctor will say yes this is CRPS another one says no.And I stay stuck in pain. I had a TRK 3yrs ago, a revision 1yr ago and the pain just below my knee remains the same as the day after my 1st surgery. I have been unable to walk more than 25yds due to severe pain. I have had 13 procedures over the 3yrs trying to cut down pain , nothing was helped. But it's crazy that up to 10 different doctors can have different opinions , I guess they really are just PRACTICING MEDICINE. I will be trying some new nerve block shots on 6/18 and if these don't work I guess it will be a DRG implant ,which scary the hell out me

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Sorry for all your pain. There is a Budapest Scale for criteria for CRPS. You can find it online. My understanding is this is the gold standard for determining if you have CRPS -CRPS is diagnosis of exclusion so if you have no other explanation for symptoms, CRPS is typically diagnosed based on scale.

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@sprinrosa64

Well I believe I have it. One doctor will say yes this is CRPS another one says no.And I stay stuck in pain. I had a TRK 3yrs ago, a revision 1yr ago and the pain just below my knee remains the same as the day after my 1st surgery. I have been unable to walk more than 25yds due to severe pain. I have had 13 procedures over the 3yrs trying to cut down pain , nothing was helped. But it's crazy that up to 10 different doctors can have different opinions , I guess they really are just PRACTICING MEDICINE. I will be trying some new nerve block shots on 6/18 and if these don't work I guess it will be a DRG implant ,which scary the hell out me

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I have tried the DRG and I’d say nothing to be scared about. It didn’t work for me but I have spoken to people who it worked wonders for. You have a trial of say 7 days before anything is implanted thus you can see if you get success. Actually I am currently trying the Stimwave implant and no luck as yet but again many people get success.
In my opinion it’s worth the trial.

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@therocket

I have tried the DRG and I’d say nothing to be scared about. It didn’t work for me but I have spoken to people who it worked wonders for. You have a trial of say 7 days before anything is implanted thus you can see if you get success. Actually I am currently trying the Stimwave implant and no luck as yet but again many people get success.
In my opinion it’s worth the trial.

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I guess I am scared because I don;t like the idea of mess with my spine. I already tried the Stemwave PNS with no good results. People I have spoken with tell me it's not the trial that caused problems but the battery implant.

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@livelifes

Sorry for all your pain. There is a Budapest Scale for criteria for CRPS. You can find it online. My understanding is this is the gold standard for determining if you have CRPS -CRPS is diagnosis of exclusion so if you have no other explanation for symptoms, CRPS is typically diagnosed based on scale.

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Here is the Budapest Critieria for CRPS to which @livelifes referred.
https://www.ncbi.nlm.nih.gov/books/NBK464482/
"To make the clinical diagnosis, the following criteria must be met:

– Continuing pain, which is disproportionate to any inciting event.

– Must report at least one symptom in all four of the following categories:
–sensory – reports of hyperaesthesia and/or allodynia
–vasomotor – reports of temperature asymmetry and/or skin colour changes and/or skin colour asymmetry
–sudomotor/oedema – reports of oedema and/or sweating changes and/or sweating asymmetry
motor/trophic – reports of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or –trophic changes (hair, nail, skin).

– Must display at least one sign at time of evaluation in two or more of the following categories:
–sensory – evidence of hyperalgesia (to pinprick) and/or allodynia (to light touch and/or temperature sensation and/or deep somatic pressure and/or joint movement)
–vasomotor – evidence of temperature asymmetry (> 1 °C) and/or skin colour changes and/or asymmetry
–sudomotor/oedema – evidence of oedema and/or sweating changes and/or sweating asymmetry
–motor/trophic – evidence of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia) and/or trophic changes (hair, nail, skin)

-There is no other diagnosis that better explains the signs and symptoms."

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granny zoo here. I started with CRPS in January 2020. I've been using a Sprint Neuro stimulator in my leg for about 45 days. I've gotten relief from the pain but when the device is off the pain returns. Lately my ears are itchy. Anyone experiencing this issue? Also having problems finding a neurologist in Hickory, NC. Any suggestions?

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@grannyzoo

granny zoo here. I started with CRPS in January 2020. I've been using a Sprint Neuro stimulator in my leg for about 45 days. I've gotten relief from the pain but when the device is off the pain returns. Lately my ears are itchy. Anyone experiencing this issue? Also having problems finding a neurologist in Hickory, NC. Any suggestions?

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Hello @grannyzoo, Welcome to Connect. It's good to hear you have found something that provides a little relief from the pain. I have no experience with CRPS but did find some information that may help you find a neurologist near your location. The Foundation for Peripheral Neuropathy has a state by state directory listing neurologists here — https://www.foundationforpn.org/living-well/neurologist-directory/#north-carolina

Here's some information on itchy ears that may be helpful – Itchy ears: 8 causes and how to get relief – Medical News Today: https://www.medicalnewstoday.com/articles/324671

Have you seen a doctor or ENT specialist to have them check your ears?

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I’ve been told this is what I have 20 months down the line. This was never discussed by my os. It’s ruined my life just wanted to ask as 21% of people get this which I wasn’t aware of if other people in this site were informed. He’s referred me for nerve block at a pain management clinic but I’ve heard there isn’t much success with this and couldn’t bare more pain than I have already. Any input would be appreciated

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@everly23

I’ve been told this is what I have 20 months down the line. This was never discussed by my os. It’s ruined my life just wanted to ask as 21% of people get this which I wasn’t aware of if other people in this site were informed. He’s referred me for nerve block at a pain management clinic but I’ve heard there isn’t much success with this and couldn’t bare more pain than I have already. Any input would be appreciated

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Hello @everly23. You will notice that I have moved your post into an existing discussion on CRPS so you may connect with members like @livelifes @sprinrosa64 @grannyzoo and @therocket who have all recently shared about their experience with CRPS.

While we wait for others to respond, can you share what you are 20-months "down the line" from and also what you are doing to address your pain at the moment?

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@everly23

I’ve been told this is what I have 20 months down the line. This was never discussed by my os. It’s ruined my life just wanted to ask as 21% of people get this which I wasn’t aware of if other people in this site were informed. He’s referred me for nerve block at a pain management clinic but I’ve heard there isn’t much success with this and couldn’t bare more pain than I have already. Any input would be appreciated

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I had the nerve block because of the insurance game. Have the Sprint stimulator in my leg at this very moment. Cut my pain down immensely. I’m reasonably sure I will need one in the spine. Makes me nervous but push is coming to shove.

Contact Sprint out of Beechwood, Ohio. Talk to them about your situation. I’m amazed at what I have been able to do for the past 45 days.

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@amandajro

Hello @everly23. You will notice that I have moved your post into an existing discussion on CRPS so you may connect with members like @livelifes @sprinrosa64 @grannyzoo and @therocket who have all recently shared about their experience with CRPS.

While we wait for others to respond, can you share what you are 20-months "down the line" from and also what you are doing to address your pain at the moment?

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Ltkr I wear a knee support crps was never discussed at consultation no pain relief works tried gabapentine amytriptaline etc

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@grannyzoo

I had the nerve block because of the insurance game. Have the Sprint stimulator in my leg at this very moment. Cut my pain down immensely. I’m reasonably sure I will need one in the spine. Makes me nervous but push is coming to shove.

Contact Sprint out of Beechwood, Ohio. Talk to them about your situation. I’m amazed at what I have been able to do for the past 45 days.

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Did you have a knee replacement? I’m in the uk and not heard of that. My os just mentioned nerve block with a view to having ablation. Glad it’s helped you. I’ve found I get awful lower back pain now as well plus on and off sciatica in my opposite buttock

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I don’t know what has caused my CRPS. Knees are OK. Amazed at how much CRPS there is in the UK. Check into Sprint. I just might help you.

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