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Not yet diagnosed officially

Posted , 4 users are following.

Nursejane
Nursejane

Even though I haven’t been officially diagnosed by Neuro specialist, I have seen several doctors who say CPRS type 1 is what I have.

I am 2.5 months post ankle fracture now. 4 weeks after fracture I was experiencing severe pain and burning from ankle to calf. My foot was dark purple. I went to emerg and they gave me stronger pain Meds and told me it was the cast that was hurting me and gave it extra padding. 

Fast forward to now, 2.5 weeks. I don’t have that same pain anymore. 

I am not on any meds at all for pain bc it I don’t feel like it’s intense enough to need it.

I have almost every symptom of CPRS. This is where I am confused.

Initially it was so terrible and intense I couldn’t get out of bed.

Now I can walk ( with a limp) and no Meds.

But I have discolouration to lower leg and foot.

Swelling, tightness, shiney skin

Pins and needless at times 

Weakness in the leg ( but I was also immobilized 4 weeks )

Sweating on the bottom of my foot ( and not on my good foot)

And my ankle foot is HOT all the time. Radiates heat.

So.. is this the calm before the storm? Or maybe a lesser case ? Or maybe not CPRS?

I do not have sensitivity to touch and I do not have intense pain.

Also not sensitive to hot or cold.

The waiting for specialists is driving me mad. If it’s supposed to be treated early, I am running out of time ... 

0 likes, 10 replies

10 Replies

  • david80207
    david80207 Nursejane

    Posted

    CRPS is a syndrome which means they don't know a lot about it. I had wrist surgery and had all the symptoms of CRPS except for the pain. (I did have pain or intense tightness around the wrist for the first three weeks) My doctor diagnosed me with CRPS. After seeing a specialist, he said I did not have CRPS but rather a Neuropathic condition. That is splitting hairs as that is what CRPS is. Definitions aside, it sounds like you have CRPS. Good luck with what ever you have and I hope it improves.

  • david80207
    david80207 Nursejane

    Posted

    I am about 80% better. It has been a year and a half. This may be the best it gets. I am grateful that I don't have the pain.

    • Nursejane
      Nursejane david80207

      Posted

      Man. It’s awful. Truly.

      What are you still dealing with ? Swelling ?

    • brenda_savvy
      brenda_savvy david80207

      Posted

      I agree the pain is just horrible. It consumes you.  It affects my mental health so bad !  I haven’t had a minute pain free for two years.  I have done ketamine etc helps for a week or two that’s it. So med wise I fly solo a lot.  Currently lying in bed crying with burning feet and throbbing teeth.  But have to get up cook kids their dinner !! 
    • david80207
      david80207 Nursejane

      Posted

      My swelling subsided but I have stiffness. I checked my hands using thermography and my bad hand was much warmer than my other hand. I get some minor pain or tightness every once in a while. One study in England said 6 % of CRPS patients don,t experience pain. CRPS is a nerve condition. Call it what you want, but Be grateful you don,t have the pain.
  • brenda_savvy
    brenda_savvy Nursejane

    Posted

    One of the main symptom of crps is PAIN. Mine got worse over time to be honest. Then it went lower and now back sky high. Depends.  Do you pass the budpest criteria.  Google it and check.  But I never heard of Crps with zero pain unless it goes into remission. So keep walking keep moving ! Let’s pray it’s not and colour changes etc settle !!! 
    • Nursejane
      Nursejane brenda_savvy

      Posted

      I know about the pain. That’s why I am so confused.

      The pain I had initially fits CRPS to a tee.

      But now i just ache.

      Nothing that I feel in need pain Meds for.

      I have all the other symptoms except sensitive touch.

      Makes me think that I’m going to just get worse and not better sad 

  • allaroundanne
    allaroundanne Nursejane

    Posted

    Your symptoms sound dead on. You have to remember that people experience pain in their own way, what is tolerable to you could be excruciating to your neighbor.  If you read my other post to you, don't worry about running out of time to catch this early, I caught mine at about the 4-6 week mark and I still couldn't stop it's progression.  And I am a board certified pain management doctor, so don't fret, there's really no big rush.  You just don't want to wait years.

    Lynn

    • Nursejane
      Nursejane allaroundanne

      Posted

      Thanks Lynn. 

      I seem to be able to tolerate a lot, so I’m always unsure.

      I had two large babies with no pain Meds. Lol

      Granted, it did not feel good.. but i did it.

      I broke my ankle 9.5 weeks ago and drove myself to emerg and only had a shot of torodol ( at my request) and went from a 10/10 pain to 4/10.

      So I guess you are probably right.

      I don’t need pain Meds at the moment, but def need to deal with swelling and stiffness. 

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