Diagnosis time frame??

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Hi everyone, I’m new to this forum but not to the site. I have posted about frozen shoulder and neurological pain, which brings me here. 

In December I had an arthroscopic capsule release to help frozen shoulder. Not long after that I started to get quite severe nerve pain in the wrist. It was the opposite arm but it was where the drip was put in. 

Since January it has gotten progressively worse, now it’s in both arms with nerve pain, regular episodes that are horrendous, my fingers curl up into a fist and I can’t release them until it is all over. On Sunday this happened 5 times, not a nice feeling. I’m now getting pain in the biceps and elbows. Anytime I move my wrists I get pain and I’ve stopped wearing my watch because it’s painful and I’m too sensitive to wear it. 

Now all I’ve read about CRPS this seems to be the problem but at the moment I’m on the specialist merry go round. I think because I’m t1 diabetic they are thinking that it’s neuropathy. I’m getting a lot of answers that are unsure or we don’t know or your symptoms don’t match with what we were thinking. The pain specialist I saw was the first one to say that he thought it was CRPS but I now have to wait till August to see him again because of the public hospital waiting list. 

I have not worked since October last year, first because of the Frozen shoulder now this. As if this CRPS, if that’s what it is is bad enough, I’m still getting over fs and my range of movement is very limited and it’s bilateral. The surgeon is positive it’s nothing he did. 

So to my question, how long does it take for a diagnosis of CRPS? I’ve been told it’s a diagnosis of exclusion so I guess I have to wait don’t I?

Good luck to you all. 

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9 Replies

  • Posted

    Have you looked at Budapest criteria. Everyone is different. I think I got lucky and seen a doctor who knew about it so I was told 3 months after I sprained my ankle.     Sounds like painful spasm in your finger.   Can you take a good magnesium supplement every day. I find powder form the best.  But a good brand not cheap crap. Also use basin and bath arms in with Epsom salts.  Do you have temperature changes ? Ice cold or burning red hot ?
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  • Posted

    I honestly think CRPS is a blanket term for neuropathic pain. I put this to my pain clinic consultant and he agreed that neuropathic pain is one of the worst pains you can suffer from. I have in both legs most of the time. I also have pudendal nerve pain, and meralgis paraesthetics, which is really severe. There is no cure, only management.

    Its a matter of finding which drugs can help. I’m taking Gabapentin and Neurontin, which give me some relief. It’s an awful condition, but it can get better.

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  • Posted

    The hardest part about diagnosing CRPS is there is no test for it.  That is why many doctors have to rule out everything else and when you have existing conditions it gives them a longer list to work with.  One of the "good" things about similar conditions is they often use the same medications or treatments.  Gabapentine, Lyrica, Nerve block injections, etc.  It is important to see a doctor regularly to work these things out and if your doctor has a long waiting list I recommend scheduling multiple appointments in advance.  I did this with my doctor, once a month and if it turned out I had an issue with medication they fit you in rather quickly.

    Also make sure to go to physical therapy regularly (2-3 times a week).  I imagine you should be in that already after any surgery or encountering restricted motion.  One of the biggest things is try to not stop using your limb even if it is just basic tasks like picking up the coffee pot or stirring a pot of soup.  You will make it so much worse if you let yourself atrophy.

    Also, can you describe your pain the best you can?   There are some key 'feelings' that tend to go with general CRPS though not always.   Numb and frozen just by themselves could point to something else, that can be cured hopefully.

    If you have not already, ask your doctor for a muscle relaxer.  I have to be on one, three times a day, because the pain sends my muscles into spasms because I am tensing so bad.   Than ask your doctor whether nerve medication or nerve block injections should come first.   It pains me to say it, but some doctors think time is a great healing device.  Let them know you want to be aggressive so you can get back to work and life. 

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    • Posted

      Thanks for the great advice, I’m on lyrica at the moment with an opioid pain medication. I can’t take too high a dose of lyrica because it makes me dizzy and very tired. 

      I’m one of these people who just wants to know what is going on. Not knowing is so frustrating. 

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  • Posted

    I did Lyrica and it did not work for me sadly.   Often time high doses are needed but your doctor should be leveling you up slowly.  Start with 100mg a day than after 2 weeks add a little more.   Well that is what my doctor did.  I turned into an idiot on Lyrica.  My brain worked slow and I literally forgot how to turn the tv on and it sent me into hysterics.   Stayed on it 2 months though pushing through the side effects until we confirmed that lyrica was not helping.  There are at least 3 other meds similiar like Gabapentine, neurotriptalin, and toperomat.  I am sure I spelt them all wrong.

    But that being said, I would really ask about the nerve block injections.   That put me into partial remission for about 6 months when I was first diagnosed. 

    Also, I read previously someone mentioned epsium salt.  Be careful with that.  My therapist said epsium salt is very bad for crps patients who are at high levels of pain.  They told me not to do it because it would over stimulate my skin and nerves.  Everyone is different and I am definitely not a doctor.  Just take all our advise with a grain of salt....oh the puns. 

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    • Posted

      I also tried lyrica.  I started in 25mg and I was very drowsy and tried 50mg for months. It made me feel horrible. Massive weight gain and also I was dropping things all the time. Started having bladder issues. Also electric shocks in head 

      Stopped this drug all of the above disappeared and weight dropped off within one month. Crazy ass drug disgusting side effects. Don’t know how these pharma industries get away with it to be honest !!! Just my opinion. 

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  • Posted

    Hey, I’ve got an update. Two of my doctors agree now, they say I have atypical type 1 CRPS. 

    The atypical part is the interesting part. I guess even for CRPS I don’t quite fit the box. Perhaps it’s the frozen shoulders I have as well as t1 diabetes but at least two agree even though others don’t. 

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  • Posted

    I just wanted to add on about Lyrica, that didn't work well for me either.  According to my PM doc, and my own experience as a PM doc, the anti-seizure meds, gabapentin and topomax work much better for neuropathic pain and since CRPS is a kind of neuropathy, it should respond best to those meds.  Of course, all of these strong medications come with their own lovely set of side effects. I am currently on a high dose of gabapentin, which I fondly refer to as my Fat and Foggy drug. I HATE it, but every time I think I have an opportunity to wean it, like we put in an SCS and it is working well, something else will pop up, like new CRPS in my leg and I am stuck not weaning but raising the dose, UGH.

    I just had a down and out discussion with my own PM doc, with my textbook perfect early stage CRPS I leg, with it marching up from the foot up the calf and now going past the knee.  I have an SCS already in for my lower back and thigh muscle cramps that fortunately actually stimulates down to my feet.  It has been programmed now to stimulate both my lower back, legs and right foot, which lowered my CRPS pain by about 30%.  Nothing to sneeze at when you will take any relief you can get.  In any case, after a series of three lumbar sympathetic ganglion blocks that did great for about 48 hours each but had no long lasting help, we needed to decide on a next step.  My choice was another SCS that concentrated at the dorsal root ganglion ( DRG).  This would be my third SCS as I have one for my neck, a Nevro which isn't working so great as it barely covers my neck pain and does nada for my arm neuropathy. My other choice was an intrathecal drug pump.  I have really thought this over.  When I got the CRPS, about two months ago my PM doc and my family doc really tried to help and I got my gabapentin raised, I got put on clonidine, buprenex patches, all along with my vicodin and flexeril.  Needless to say I was floating through life.  I was so groggy I bit a good chunk out of my tongue, not good.  I am not dealing well with all the side effects.  I figured if I got the DRG for my leg, I still wouldn't really get to lower the gabapentin because I take it for my arm pain too.  I would really only get off the clonidine and possibly the buprenex.  The pump would give me the chance to take care of pain everywhere and reduce all my medications since I have pain just about everywhere.

    Sorry to steal your thread, Burtpies, but I wanted to give you an idea of the treatments that you will be presented with when you finally get to see your PM doc. If you have any questions about them, I can answer them as I used to perform all of them! I hope that giving you an inside my head view of how I made my decision about my own healthcare can help you with your own.

    Lynn

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    • Posted

      I mostly take paracemol and when goes too high rest. Pace to get it back down. No mediation gets it down really without giving me terrible side effects. So I don’t see the point ! Using cbd oil too. Anyone I really have seen who has gone into remission or near got off all meds. So are meds making out central nervous worse ! That’s my opinion on me.   

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