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

Hi folks, it’s been awhile since I posted. Sorry. Not sure what’s been happening. Bad days due to subzero temps with high humidity. Life with CRPS sucks but we can do it!

Does anyone have CRPS?

Hi Rocket, welcome. I see you're looking to connect with other members who have CRPS. For that reason, I moved your message to this existing discussion group where you can connect with members like
@mam14 @dstewart318 @neverrest @nlong53 @londonwc1 @smallengineguy @csteel and more

Rocket, while we wait for others to join in, why not tell us a bit about yourself. What is the cause of your CRPS? What symptoms do you find the most challenging and what brings you relief?

Over 20 years ago I had three ankle fusions. It seems that in fact “three times was a charm”. After the third fusion I developed symptoms for CRPS which were unfortunately misdiagnosed.
So I have had CRPS now for over 10 years. It took many doctors and years to define the issue.

There are days it’s debilitating and days not as worse but every single day there is pain. There is never a break from the pain.

My major symptoms are intense swelling of the foot and ankle, tremendous burning sensation that is constant, pain in ankle, foot, and most prominently in my toes. My foot pulsates and feels “on fire”.

In truth I get very minor relief with my meds. I try to stay as active as possible simply because I must.

In addition I am now currently on my third and final trial for a pain implant device. I have tried two other major products with zero relief. That’s me but I have spoken to others who have gotten relief from said devices.

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

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.

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.

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.

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."