I have had crps for 4 years now in my legs and I've been put on pregablin for 5 mouths now, my doctor said that I would feel less pain and over a course of a couple of mouths return to normal. I sleep better because of them but am still in pain is that normal? Also when I get stressed they hurt more is that normal as well? I don't know what to do as I want to not be so limited from this. Many thanks.
Alan x
I have been on medication, now for over 5years, for CRPS in my legs and feet. Pregabalin and Gabapentin both refused to work for me. I have now got to a point where, although not pain free, I can bear the pain, and tolerate it to a reasonable level, but have been told unless the pain is resolved within one year, it is unlikely to ever be got rid of completely, as it becomes a neurological fault and the brain misinterprets the signals it is receiving.
I'm sorry to hear that you have had this for so long.
Can i ask what do you now take for medication wise? Is it normal to worsen when stressed? Is there anything I can try to help improve life?
MST, Oramorph, Duloxetine, Nortriptyline and paracetamol, are my main forms of analgesia, but I do have another item if I am really getting in to trouble. Because the brain is misinterpreting the signals from the nervous system, when we get stressed the brain is working overtime, so is the nervous system (why we get hot and our heartrate goes up), then of course we can feel worse. Ideally, we would be cocooned in a stress free, anxiety free society and we would then be almost fine. I find that when I am in a lot of pain, I do nothing (go to bed/lie down on the settee/ sit down in the armchair), when I feel okay, I try not to overdo it otherwise I will pay for it later. I take MST, Duloxetine and Nortriptyline religiously, but try to avoid the other stuff unless I need it, because it just dopes me up and makes me sleep anyway.
I have crps in my left foot and ankle. I was on gabapentin and then lyrica/topamax for 1.5 years. They were awful and I couldn’t stay on those medications forever. I tried injections and spinal nerve treatments that had no effect. Finally I got a spinal neurostimulator, which I have had for 2 years now and it’s been wonderful. It does not take away all the pain all the time but does very well. It masks the pain by replacing the pain signals the brain is getting with other stimulations, kind of like the pin and needles feeling you get when a limb falls asleep. There are lots of different programs that can be set and you can switch between programs as needed, etc. It has been a godsend for me. I take no pain medication now and my pain is pretty well controlled or at least within tolerable amounts most of the time.
There is a trial that you do first, where they implant electrodes into the nerves that are affected, and for 5 days, you live with the device strapped to your body, just to see if it will impact your pain. If it helps your pain at least 50%, they will consider that worth it. It has been amazing for me. I actually had surgery to get the newest battery put in because it had more features than my first battery and it has been even better.
If it is CRPS that you have, I highly recommend trying a neurostimulator. Mine is a Boston Scientific and it will cover any pain signals coming from the lower half of my body, as it is implanted in the middle of my spine. My condition has migrated a bit up my leg and I know that if it continues, this will still be able to take care of the pain.
Highly recommended and you can ask me questions if you have any.
Hi there Alan...what type of pain did you have for them to diagnose the CRPS ? How much pregabalin do you take? It does not sound like your symptoms were typical of someone with CRPS ? I am sure you will get help . Best wishes Sharon
Hi Sharon, it all began 4 years ago when the lower halfs of my legs were hurting but all the time, I had taken a couple mouths off working hoping that would help, but to no avail. Then I went to the cronic pain clinic and was told that's what I had. I've been though so many test and had no answer for it. Until then. I was waking up in pain and struggling to sleep because of it. The pain feels like I have ran a marathon and my legs ache and hurt, I can't or lift or work on my legs with the pain increasing. I'm currently on 150g twice a day I'm also on citalopram and that's helped me as well. I'm still unsure if I have crps or not? as I haven't spoken to anyone else who has it.
Many thanks
Alan x
I have crps in my left foot and ankle. I was on gabapentin and then lyrica/topamax for 1.5 years. They were awful and I couldn’t stay on those medications forever. I tried injections and spinal nerve treatments that had no effect. Finally I got a spinal neurostimulator, which I have had for 2 years now and it’s been wonderful. It does not take away all the pain all the time but does very well. It masks the pain by replacing the pain signals the brain is getting with other stimulations, kind of like the pin and needles feeling you get when a limb falls asleep. There are lots of different programs that can be set and you can switch between programs as needed, etc. It has been a godsend for me. I take no pain medication now and my pain is pretty well controlled or at least within tolerable amounts most of the time.
There is a trial that you do first, where they implant electrodes into the nerves that are affected, and for 5 days, you live with the device strapped to your body, just to see if it will impact your pain. If it helps your pain at least 50%, they will consider that worth it. It has been amazing for me. I actually had surgery to get the newest battery put in because it had more features than my first battery and it has been even better.
If it is CRPS that you have, I highly recommend trying a neurostimulator. Mine is a Boston Scientific and it will cover any pain signals coming from the lower half of my body, as it is implanted in the middle of my spine. My condition has migrated a bit up my leg and I know that if it continues, this will still be able to take care of the pain.
Highly recommended and you can ask me questions if you have any.
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