Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 06-23-2016, 01:28 PM #1
abigailsophiex abigailsophiex is offline
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Default Medication?!

Hi everyone,

I won't go into too much background detail but I have had CRPS for 18 months now, it started in my left arm and spread to my right leg a couple of months later.

So basically up until now I had only had physiotherapy and medication. I saw my pain consultant last week who is booking me in for a stellate ganglion block ASAP (my arm is worst affected to we are starting there). He also prescribe me carbamazepine (tegretol). Now Ive been on this a week and its making my sleep even worse than it was before, and every time I wake I'm feeling sick. I am also feeling really groggy throughout the day and very forgetful. Im only on 100mg at night. Ive tried so many drugs, amitriptyline, nortriptyline, duloxetine, gabapentin, pregabalin, topiramate, even fluoxetine. None of these I have been able to tolerate at a dose high enough to help my pain. I take amitriptyline at 10mg purely because it does help me sleep a little better but that is it. some of these drugs I have even given 2 or 3 trials with no success.

I generally have a problem tolerating medication, not just these types of drugs. I always struggle with antibiotics and I have adverse reactions to opiates so that puts me in a very difficult situation for managing my CRPS. Since the beginning of May I have been off all the meds apart from the 10mg amitriptyline and Ive never felt better in myself. Its so nice to not wake up horrendously groggy and actually be able to think straight and not feel sick all the time, the pain is still there but it was there when I was on the meds anyway.

Anyway I was just wondering if anyone here has been in a similar situation to me? I will give the carbamazepine the 28 day trial (thats the amount I was given) but if it doesn't help I am seriously considering asking my consultant if we can just drop the oral meds route because its really not helping me.
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Old 06-23-2016, 01:52 PM #2
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I have never gotten much relief from meds either. I actually ended up with Seratonin syndrome from the meds and ended up going off of everything...then was put on a small dose of amitriptyline to help me sleep (I would get 3 hours with amitriptyline). Then I tried tDCS therapy and was able to get off even the amitriptyline and was getting a full 6-8 hours of sleep a night. The tDCS never helped me with the pain...but the sleep really improved my quality of life. Getting sleep is so important. Unfortunately...since I fell off a ladder back in October my pain has increased and my sleep is back to nothing so my new pain dr has me on Tizanidine and Lyrica and Meloxicam. I haven't noticed any improvement except in my sleeping 5-6 hours a night with the Tizanidine.

Anyway...I got a little off topic there. My point was...I WAS off of all medications and I was much happier for it because I was not getting much relief at all from the meds and the side effects were awful. I think everyone needs to make decisions based on their own situation and what works for them. If you want to go off everything...then that's your choice. Not all doctors will be happy with this though...so just be prepared for that possibility.

What worked for me was desensitization therapy, lots of at home physical therapy (about 6 months worth...slow and steady),tDCS treatments, a TENS unit, ultrasound heat therapy, hot baths with Epsom salts (sometimes twice a day), and using a walker (which helps with my balance, took weight off my left leg (reducing pain), and also allowed me to carry stuff with the walker instead of in my arms...which meant less pain in my RSD arms). I was able to get back to work full time and did this for several years on no meds until I fell off the ladder last October. In December I bought a Quell unit for pain relief and it doesn't make a HUGE difference in the pain...but it does help when used daily.

All that to say that there are other options. Most of this except for the Rx for the tDCS unit and the physical therapy was done on my own (walker was suggested by Physical Therapist but I worked on my own to figure out the best ways to use it to help me be as functional as possible). It IS possible to get better without meds. I can't wait to get off of what I am currently on...just need to figure out what is going on with my shoulder so I can get back to all my previous treatments.
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Old 06-24-2016, 10:39 AM #3
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Quote:
Originally Posted by catra121 View Post
I have never gotten much relief from meds either. I actually ended up with Seratonin syndrome from the meds and ended up going off of everything...then was put on a small dose of amitriptyline to help me sleep (I would get 3 hours with amitriptyline). Then I tried tDCS therapy and was able to get off even the amitriptyline and was getting a full 6-8 hours of sleep a night. The tDCS never helped me with the pain...but the sleep really improved my quality of life. Getting sleep is so important. Unfortunately...since I fell off a ladder back in October my pain has increased and my sleep is back to nothing so my new pain dr has me on Tizanidine and Lyrica and Meloxicam. I haven't noticed any improvement except in my sleeping 5-6 hours a night with the Tizanidine.

Anyway...I got a little off topic there. My point was...I WAS off of all medications and I was much happier for it because I was not getting much relief at all from the meds and the side effects were awful. I think everyone needs to make decisions based on their own situation and what works for them. If you want to go off everything...then that's your choice. Not all doctors will be happy with this though...so just be prepared for that possibility.

What worked for me was desensitization therapy, lots of at home physical therapy (about 6 months worth...slow and steady),tDCS treatments, a TENS unit, ultrasound heat therapy, hot baths with Epsom salts (sometimes twice a day), and using a walker (which helps with my balance, took weight off my left leg (reducing pain), and also allowed me to carry stuff with the walker instead of in my arms...which meant less pain in my RSD arms). I was able to get back to work full time and did this for several years on no meds until I fell off the ladder last October. In December I bought a Quell unit for pain relief and it doesn't make a HUGE difference in the pain...but it does help when used daily.

All that to say that there are other options. Most of this except for the Rx for the tDCS unit and the physical therapy was done on my own (walker was suggested by Physical Therapist but I worked on my own to figure out the best ways to use it to help me be as functional as possible). It IS possible to get better without meds. I can't wait to get off of what I am currently on...just need to figure out what is going on with my shoulder so I can get back to all my previous treatments.
Thanks for the reply, Im glad I'm not the only one that felt better off all the meds.
Yeah I think my consultant is probably going to be funny about me not continuing to try them, I just worry that they will think that I don't want to get better or something, when really I'm just fed up of getting all the side effects and no relief all the time.

What is a tDCS unit? I've never heard of this before? xx
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Old 06-24-2016, 02:40 PM #4
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I'm going to give you a link to the thread about tDCS...there is a ton of information there including what it is, how to set it up, what you need to do it, etc. Several members got great relief from it, some none, and me not so much pain relief but fewer flares, shorter flares, and most importantly...MORE SLEEP.

tDCS for RSD Thread

Hopefully that works...I don't link things often. Will try it out after I post to make sure it did.

I don't know if you have tried TENS units, ultrasound heat therapy, or Quell...but I was able to get all of those things off Amazon and they have also helped a little. None required a Rx from a doctor. The TENS and the ultrasound weren't expensive...though I have found the TENS of limited help with the more generalized pain since spread and only use it for flare ups now when I have one particular spot where I feel the bone crushing pain and I can surround it with the electrodes of the TENS unit...but the ultrasound works great over a larger area (I like to use it after a warm bath with Epsom salts) and Quell is supposed to work for any area of the body and seems to work for the generalized pain (but not as well as the TENS works on a specific area).

Anyway...hope that helps. Let me know if you have any questions about the tDCS treatment (or anything else). I still do maintenance treatments about once every two months. I tried doing them more often when I wasn't able to sleep after the fall off the ladder...but I think my current sleep issues are due specifically to the pain in my shoulder and until that gets better I think I am just out of luck.

Take care and good luck!
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