24/m recently diagnosed with crps

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Hey all,

First off sorry for grammar and typing, my good hand is useless...

My name is matt and I recently got diagnosed. It's mainly in my foot and hand but the pain spreads and shoots a lot further.

I was at the hospital and 6 times and thank god the 4th doc mentioned he thought it was this.. Then we went to a few higher end hospitals and saw the head orthopaedic doctor without a referall because my extremeties were so swollen and she confirmed and diagnosed me.

I'm sure you're aware of how much pain it is. I've been told it's more painful than cancer.

I take 4mg hydromorphone, naproxen and 300mg of ganapentin 3x a day. Which to honest makes me very dopey but for my amount of pain it isn't working

I was curiois how other people dealt with the pain. I'm going to be going to a very high end pain mngmt clinic, and do physio 3 times a week.. Also counselling to talk about living in chorionic pain

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8 Replies

  • Posted

    Hi Matt

    Hydromophone is a really short acting medication I would think they will put you on a longer acting formulation of medication such as an extended release type tablit or fentinyl patch.  There are quite a few options for continous coverage narcotics.  I have only had hydromorphone in somewhat extreme cerumstances i.e. after surgery or brken bones and its half life is very short in the body.  Its has been found that manye opiate pain killers are not as effective on nerve pain plus people can build up a tolerence fairly quickly.  There is also a high risk potential for addiction because pain usually causes depression and depression increases pain so it can become a very blurry line whether a person may be taking meds to treat the pain or to treat their mood.  I am not saying anything about you i want to be clear on that.  Being in your shoes right now sucks but keep up hope there really are a lot of options this early on.  I mention addiction because it is the path i ended up on after getting CRPS.  My CRPS started after a rutene knee scope and it took 6 months before I was given an accurate diagnosis.  I was actually 24 at the time and could not deal with the idea that my left knee was like an 80 year olds and needed to be replaced but they told me i would have to wait until i was 50.  On top of that i had this burning in my leg all the time that would cause weekness and many many sleepless nights.  I found releif with narcotics but i was not treating the phsychological side of chronic pain so I begain using my meds to make me feel better.  It sounds like you are on the right path though cuz you mentioned your going to be in counseling.  That may be one of your biggest helps.  Accepting this stuff is tough man (i still am up and down with it but most days I can say now are more ok then horrible).  I take 600mg of gabapentin 4 times a day and it has helped a lot.  Gabapentin was the first med i was put on to treat my CRPS and significantly reduced the burning.  Another med fequently used for chronic pain is the antidepressant Cymbalta it helps with mood and pain.  I also take wellbutrin (antidepressant) and tramadol, and i also have hydrocodone (vicodin,Norco) for when the other meds arent enough.  It sounds like you are on the right path and i really think your going to find releif soon.  I just wanted to mention my expirience with pain meds and how it can be risky.  I by no means think that is you i just know it is a hole a lot of people in our possition fall into.  Before I accepted that I had an addiction issue I had worked my way up to a prescription of 200mg of methadone a day, (which is a lot) I gained 100 pounds in a year and i was about ready to end it all.  (I was abusing my methadone and taking up to 800mg a day)  There was about 6 months that i could have just stoped breathing any night and when i was at the hospital detoxing the neurologist said i had likely suffered some bouts of severe respritory depression because i showed signs of brain damage.  I managed to go 2 and a half years with no narcotics but started needing them again as my CRPS progressed.  I now have my pain meds given to me on a daily bases so I am not tempted to over use them.  ( my family owns a Pharmacy so my parents keep my meds and drop them of daily).  Matt, I guess i just really want to express how important mental health is whenit comes to chronic pain.  Especially this kind of pain.  I also want to express that there is hope and really think your going to get the help you need.  It sounds like you are on top of it.  I have found that these discussions are really helpfull because people here can understand me and i can understand them.  No one i know (friends,family,anyone) has CRPS and it is an impossible thing to understand unless you have expirienced it.  I hope this helps a little.  Feel free to ask me anything.  I am here if you need to talk man.

    I hope the absolute best for you



    • Posted

      Thanks for the quick snd helpful response.. You echoed some if my fears and that's the addiction aspect.

      My doctor did give me the short half life pills because he wasn't convinced of the diagnosis but not that I got it confirmed by specialists I have talked to him (seeing him tomorow). Earlier he had mentioned a longest med, but first we need to find a dose that works of the short term and the 4mg hydro while make me drowsy and loopy doesn't help my pain that nuxh. He also mentioned patches I believe and and iv tube that would be connected to a belt I wear that auto gives you doses.

      I agree the counselling is huge not just cuz it's so hard to desk with this amount of pain but to make sure you're...stable

      I also er lots of family/.friend and even randoms who have heard.

      But they'll never understand the amount of pain and how hard it is to do simple tasks

      Thank you much

    • Posted

      Again sorry for terrible typing my good hand is part of the issue
    • Posted

      Just an uosate.. My pain seems to be increasing everyday. I am now on 10mg hydromorphone and still in severe pain.

      The short actung meds are temporary until we find the right dose then I'll be getting fent patches based off of what strength I'm at..

      I'm starting physio Monday and my doctor has done aching of referals for neurollogistsv, osteopath, counselling, the top pain mngmt clinic in canads(..he has friends that he's asking for favors to get me in quick), Eric.. My doc is amazing.

      My pains going up,. Especially in my hand which used to be the least painful.. Now it might be the worst

      This meds make me super drowsy and with my good hand unusable it's hard to keep up with the messages/PMs so I apologize.

      Also. I get burning pains in my toes and my hand a lot. I'm seeing my doc. Mon. Is that the nerve pain?. Perhaps more GABA?

      Thank you everyone forll the support!

  • Posted

    Hi Matt, been reading your discussions and wondered if anyone had mentioned Lidocaine patches to you. They are more often used for patients with shingles but I have found them really helpful especially at night when its so difficult to get some sleep. They are very cooling and infuse a little local anaesthetic. I realise you are having to take in quite alot of information and that can be very difficult when experiencing the pain of CRPS but hope it helps. Take care and be kind to yourself.
    • Posted

      For the tip, I will bring that up with my doc next week. There's so much contradicting info floating around it's hard to pick which ones to follow up with (always go with docs advice obviously first ).

      I dno if there's patches qualify under this but I've been reading alot that icing/hot foot baths/ and I forget what it's called but where you have hot and cold tubs and rotate between the two.

      I try and stay away from anything that invoke heating and cooling for this reason.

      Thanks for advice! smile

    • Posted

      Also to add on I didn't just read that so never tried heating/cooling. I noticed myself it felt good while doing it but after I was in extreme pain.
  • Posted

    Hi Matt. I have lived with for over 24 years. I still suffer but have learned how to control the pain for the most part with my mind. I just don't give it a second thought. At least most days I don't. My doctor is going to put a spinal cord stimulator in my back in the next few weeks. Have you checked into that? I have heard great things from other suffering from CRPS with the spinal cord unit

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