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Is my treatment for CRPS type 2 enough?

Posted , 9 users are following.

cookie281
cookie281

Hi there,

I have type 2 CRPS in my right foot after a seriously broken leg. I was wondering if the way im being treated is correct as most doctors in this country don't know much about it. At present im on Gabapentin 900mg per day which doesn't do much expect make me feel horrible and im also on a 4 week course of prednisone 2 weeks of 80mg per day then reducing. Im also doing physiotherapy once a week, at the sessions all he does is see how much movement i have and stretches my ankle to keep it moving. He has given me some exercises to do at home including minor weight bearing, mirror work and trying to visualize myself walking. What im asking is this the right treatment or should i be doing more or other things. Im starting to get worried because its getting worse my foot is now over twice the normal size and i'm starting to get swelling and pain in my leg.

Cheers

Brodie

1 like, 12 replies

12 Replies

  • yvonne511
    yvonne511

    Posted

    If you haven't already looked, the NOI approach to treating CRPS is worth reading (easy to find on internet searches and the NOI website). sounds like your therapist may be using that. I've just been told I probably have it in my hand post-fracture and this is the latest evidence-based approach. It includes Graded Motor Imagery and mirrors - amongst other things.

    I hope you start to improve soon.

  • karen04540
    karen04540

    Posted

    The physio sounds about right and I go with what Yvonne says. I believe that movement without inducing pain (although some discomfort may arise) is the goal. My experience was the physio didn't have my notes, pushed me too hard from the start (without any form of pain relief) and I had 4 half-hour sessions planned once every 3 weeks. It sounds as if you have a good team looking after you and that they are following a joined up treatment plan. In fact I envy you!
  • michelle08284
    michelle08284

    Posted

    hi hun its sounds like ur getting the best treatment my physio seen me once every 3 mnths an did nothing apart from repeat herself as i have loss of strenght on the right hand which i already knew she has now told my specalist that theres no more they can do so keep at it hun u stand a gd chance of sum improvement with the team thats workin with u chin up xx
  • michelle08284
    michelle08284

    Posted

    hi hun its sounds like ur getting the best treatment my physio seen me once every 3 mnths an did nothing apart from repeat herself as i have loss of strenght on the right hand side which i already knew she has now told my specalist that theres no more they can do so keep at it hun u stand a gd chance of sum improvement with the team thats workin with u chin up xx
  • cookie281
    cookie281

    Posted

    HI all, Ive just received the report from my specialist and i have been referred to a specialized pain clinic as my crps is on the verge of becoming chronic crps and he has stated there is a very high likelihood of me never returning my job or any physical employment. so im happy that im going to be actively managed in a specialized team but cant help but be a bit depressed that ill most likely never do my job again.
  • michelle08284
    michelle08284

    Posted

    im glad u finally got an answer an somebody to help you hun sorry about the job though but u could always do something else to keep you going dont let this get you down hun xxx as me grandad would say keep smiling xx

  • Smiley1982
    Smiley1982

    Posted

    hi,

    I am currently having Hyperbaric Oxygen Treatment which has brought my pain levels down considerably, for the first time in many months, I am now able to walk using only one crutch and the movement in my knee is much better too. I would recommend this treatement to anyone with CRPS following my experience - the downside is that it is only covered by the NHS in certain parts of the country (I am paying for the treatement myself)

    • RogerB
      RogerB Smiley1982

      Posted

      Hi smiley,

       I was looking into this also and was wondering how much it costs. I am at my end of trying to find something that helps. I'm tired of throwing water at the flames instead of what's on fire. The only thing is I heard it only helps very soon after the injury occurs. Would it still be effective a year afterwards? One of my doctors thinks not but I don't trust my doctors anymore.

    • Smiley1982
      Smiley1982 RogerB

      Posted

      Hi Roger, 

      In the UK there has not been much research into this which is why Dr's are sceptical (my dr was too as well as my physio therapist), however in the USA HBOT has proven to reduce pain levels for those suffering with CPRS. I found out about this treatment through spending hours of research on the internet as the pain was unbearable. The clinic I went to charges £100 per session and goes to a depth of 10 meters, however I also recently contacted a local MS centre which has a HBOT chamber to ask if they take private patients and they confirmed they do and they charge £20 per 1 hour session, however their machine only goes to a depth of 7 Meters so may not be as effective. 

      I noticed a drop in pain after 3 treatments (within one week). At around 14 treatments pain levels were so low I could drive again and start getting my life back. I have now not had any oxygen treatment for over 3 weeks and am pleased to say that although I am not back to "pre CPRS", the pain is bearable and I am able to live my life.  If you want to speak more please let's know and I can give your email address then I can send you links of research done in this area. I believe that HBOT would still help to reduce pain even a year on but I am not an expert, just going on my own experience and reading other stories in the internet! 

  • lynnly26993
    lynnly26993 cookie281

    Posted

    Hi,

    Gabapentin did not work for me.  I have found that to avoid narcodics, they try the nerve related meds first.

  • alsion
    alsion cookie281

    Posted

    I have had the condition for over three years in my foot and have to walk with crutches now. I take gabapentine, naproxen, co-codomal and amytriptyline. Along with lidocaine patches I manage to work. But without mindfulness sessions to learn how to do the exercises I wouldn't be able to manage. The key to this condition, apart from keeping mobile no matter how painful , is literally mind over matter. The psychological part of this condition is the main problem. I have had extensive pain management sessions and talked to experts in the condition and they all say the same. How you are thinking about the affected limb is the key. The more you hate the limb the worse the pain will become. I'm not saying I'm living a wonderful life after having all the help , far from it. Non stop pain of this kind is just unbearable but it is with you and acceptance does help the pain. The guanethine blocks may help, but I didn't get relief from then. Spinal blocks are an option if you are willing to take the risks that come with this intervention. Also you need to do de-sensetize excercises. A bowl of hot, warm and cold water and dip the affected area in each over and over. A feather and other types of objects touching it. It is all about being mobile and thinking good about your limb instead of hating it. Very hard I know. Every day I wake and reach for my crutches the pain increases but in work the pain reduces as I'm concentrating on other things.  Read  about Rachel Morris from Paralympics and be inspired
  • yvonne_33997
    yvonne_33997 cookie281

    Posted

    Hello, Im type 2, following a seriously broken leg , peroneal nerve damage aswell. And I too am on 900mg gabapentin. Im ok on that dose , I get light headed but it does nothing for the crps . Im also on colpermin as the crps has now affecting my bowel so I have IBS. Apologies but it sounds like you need a new physiotherapist. If your not touch sensitive then I can recommend acupuncture. I was lucky my physiotherapist against my skeptical believes knew what he was doing. The needles dont go into the source of the crpsa, but the adjacent limb. It helped get me into remission. I was in remission for 8 wks , but I burnt my fingers 4 weeks ago and now its hit me like a reawakened demon. I take vitamin C supplements daily , its had ggod reviews and research results . Avoid all processed foods , caffeine. If your getting inflammatory then avoid white bread and pasta. Keep active even on the worse days. Do you have localised numbness?.
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