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CRPS type 2 / atypical symptoms

Posted , 4 users are following.

sparrowhawk.
sparrowhawk.

My arm was injured last year due to a cycling accident. I have been left with damage to ulnar nerve, and persistent pain. I have self diagnosed CRPS but healthcare workers seem reluctant to give me this label, saying I don't have enough symptoms. I previously had abnormal hair and nail growth; this seems to have stopped but my affected fingers have recently become very stiff and somewhat discoloured. I have muscle wastage and the affected area is always colder than the other side. I have read the diagnostic criteria for CRPS type 2 (i.e. caused by a nerve injury) and  i do meet these.

I guess I wonder if type 2 does present in a different way; for example, the pain doesn't normally spread around the body. The problem is I understand this to be a very rare condition. I wonder if the doctors just don't see that many people like me. Has anyone else had "atypical" symptoms, or do you have any info on the differences in presentation between CRPS type one and two?

0 likes, 17 replies

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  • brenda_savvy
    brenda_savvy sparrowhawk.

    Posted

    Hi there. 

    Do you have pain ? Pain is key factor here. 

    • sparrowhawk.
      sparrowhawk. brenda_savvy

      Posted

      Hi Brenda. Yes I have had very severe pain (burning, stabbing, etc). It was quite well controlled on nortriptyline and gabapentin, occasional oxycodone. In the last week it has got suddenly worse, corresponding with an increase in other symptoms - discolouration and stiffness. From what I have read, this seems to be similar to a "flare up" in CRPS.

    • sparrowhawk.
      sparrowhawk.

      Posted

      just to add - the doctors have been saying i simply have neuropathic pain, and do not have enough additional symptoms to meet criteria for CRPS.
    • sparrowhawk.
      sparrowhawk. brenda_savvy

      Posted

      many doctors! have seen two pain consultants. at that time i had fewer symptoms though. am going back to the consultant soon. unfortunately in my experience, once they've decided you have/don't have something, they are reluctant to go back on it.

    • brenda_savvy
      brenda_savvy sparrowhawk.

      Posted

      Well if you think u have it just treat yourself. 

      I find basins of Epsom salt helps me. Do you have the cold crps or hot !? Inhave cold. 

      Never use ice. Keep it mobile. 

    • sparrowhawk.
      sparrowhawk. brenda_savvy

      Posted

      that is interesting, why should you not use ice?

      mine is cold... i think things have got worse recently because the weather has got colder here.

    • brenda_savvy
      brenda_savvy sparrowhawk.

      Posted

      I am not sure but 💯 do not use ice.  

      Please try Epsom salts.  A few times a day it really helps me. Are you on any Facebook groups ? 

    • robin93893
      robin93893 sparrowhawk.

      Posted

      Can't post links here but if you google "Ice and CRPS, RSD" you will find a page that explains this issue.

      I'm not sure how good this info is, seems to me if the explanation is correct then it's only dangerous if the area gets colder than it should do anyway, near freezing. I've stopped using cold packs since reading it but would consider using them if/when my knee gets really hot, so I'm just reducing it to normal temperature, not below.

    • brenda_savvy
      brenda_savvy robin93893

      Posted

      Ice will cause spread or bad flares.  Trust me.  

      You can use cold packs for heated limbs. Like leave in fridge. Not freezer. That is safe 

    • robin93893
      robin93893 brenda_savvy

      Posted

      Thanks Brenda but I'm one of these terrible sceptical people that needs to know the reasons for everything, if there's something I don't understand it bothers me until I've managed to get to the bottom of it, I hardly take anything from anyone on trust! If you have some good source of info on this I'd be very grateful to know about it. You can't post links in public areas but you can PM them, I believe. Meanwhile, just to be safe, I'll put some cold packs in the fridge! smile

    • brenda_savvy
      brenda_savvy robin93893

      Posted

      I will pm you yea. 

      But I know only two week ago I had ice pack on my neck to soothe pain. It was only 5-10 min on and off I knew I shouldn't but only thing was helping. Hours later my wrist and arm locked. Severe pain. Spasam. Lasted 36 hours. It was horrific I couldn't move my hand wrist lower arm. My poor kids watching me.  The ICE started that. 

    • robin93893
      robin93893 brenda_savvy

      Posted

      Thanks Brenda, sorry you had to go through that.

      Now though I'm wondering about the cryo/cuff device, which is always above freezing point. I have one but had to stop using it because when it was bad my knee couldn't take the pressure. It's not so bad now so maybe I'll give it another try.

      To PM anybody click on the icon just to the right of their name, it looks a bit like an envelope.

  • Rusky123
    Rusky123 sparrowhawk.

    Posted

    I have recently been diagnosed with CRPS after an ankle break in February. I had 1 plate and 8 screws during my surgery and dreadful swelling up to my groin, had DVT scans etc but was OK apart from the constant pain. Now all the swelling has nearly gone I cannot touch my leg anymore because the pain in foot gets so bad, it is like electric shocks. If I touch my knee, well away from operation scar I get pains in my foot, I am now to scared to touch my op scar. I have no idea if I have type 1 or 2 I do not know the difference, but the pain is a constant burning and getting too much. I have been offered nerve blockers but do not want to go down that path.

    As an aside my toenails on my right foot, where the break was, seem to have stopped growing although blood supply is OK.

     

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