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Senior Member
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Join Date: Jan 2010
Location: Illinois
Posts: 1,785
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Senior Member
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
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The pain doctor is a very good place to start. They will be able to get you on the right meds (it sounds like you are on the right path to start) and will be able to perform sympathetic nerve blocks which are a typical starting point for someone with RSD.
He should also perscribe physical therapy. I know the pain is intense and awful...but RSD is a move it or lose it kind of thing. Immobilization is BAD for you when you have RSD so you need to keep moving your foot as much as you can. In the beginning this may be things as small as heel/toe raises while sitting, scrunching up a towel with your toes, drawing the alphabet with your foot, etc...but movement is key. When I was first diagnosed, I did pool therapy which was good because I would do weight bearing exercises without as much pain in the water (though the water itself did provide some of its own challenges with regards to pain). Also...definitely want to discuss with the doctor and therapist desensitization techniques to try to normalize the sensations in your foot so that you can wear socks and shoes without so much pain...this will give you some protection against worse triggers like cold air and stuff.
And...as important as physical therapy sessions are...it is just as important that you make sure you work with the therapist to create a home routine of exercises that you can do every day (throughout the day at your own pace). This will allow you to progress faster than you would if you just went to therapy 3 times a week. Insurance might limit the number of visits you can have at physical therapy...so it is crucial to do the work on your own. Realize that physical therapy is a slow process...so after a couple of weeks I would recommend discussing how many visits you have left with insurance and then go down to once a week at therapy with the rest of the exercises being done on your own. You cannot make them do this of course...but if they see that you are doing the work on your own and making progress they may be open to this idea. It is a shame for some people that they do therapy, improve, and then run out of visits and end up spiralling back to where they were before therapy because they have no direction and don't know how to keep progressing further.
I am sorry to hear that you are dealing with this monster but you are very lucky to have a diagnosis so quickly. The odds are greatly in your favor for having successful treatments and remission is much more likely. I know it is very scary...but you WILL walk again...you WILL sleep again...you WILL be able to live you life. I am not saying that it will not be hard...but you can do it if you really set your mind to these things. A year ago my RSD spread and I ended up in a wheelchair unable to stand or walk at all for months and months...now I am up and moving and feeling more and more like my old self. You have a better chance of remission than most of us because of your early diagnosis but even if that doesn't happen (worst case scenario) that doesn't mean that you are sentenced to death of everything you knew and loved. A lot of it has to do with your mind set....don't give up. It is hard work...a daily fight to not let RSD rob you of your entire life...but it's worth fighting.
There are some things to be aware of at the beginning:
One...as I said...do not immobilize you foot...keep it moving even if all you can do is tiny little stetches. Trust me...all the pain you go through with this will be worth it when you start walking again.
Two...NO ICE!! Doctors had me icing my ankle for months before I had a diagnosis and I have no doubt that this made my RSD progress father, faster within the first 6 months.
Three...if you are not getting enough relief...talk to your doctor. I would stay away from narcotics...they generally do not help RSD pain and are not worth the trouble they can cause long term if they won't give you much relief anyway. Other meds that might be worth a try are adding Tramadol for the pain and an NSAID for an anti-inflammatory (meloxicam/mobic was the best one for me). This combination worked well. But make sure you only start one new med at a time so you can tell which ones are helping and which, if any, are causing side effects. I also am a fan of Lidoderm patches. They don't help me a LOT with the pain but do help take the edge off. Initial application can be a little painful because the patch feels cold when I first put it on but that subsides quickly and by the time it comes off my limb feels warm.
I have found significant pain relief with a TENS unit. This doens't help anyone but they usually offer some sort of stim at physical therapy so it may be worthwhile to discuss trying it out in therapy to see if it helps you. That...and ultrasound heat therapy. I found it beneficial to do the ultrasound for 5 minutes at the beginning of therapy and 15 minutes of stim and HEAT at the end. I would leave therapy with my pain level down to a 3/10 and when I arrived it would have been a 8 or 9/10. The pain level would go up within and hour after therapy but at least it was some noticeable relief even if for a short period of time. I now have my own TENS and ultrasound machines at home. If these seem to help you at therapy then definitely ask your doctor to write you a script for a portable TENS at home. I actually wear mine all day. It clips on my pants pocket and I run the wires down through my pants leg. I don't have it ON all day but I turn it on for 30-60 minutes and then it's off until I feel like the pain is creeping up and then I'll turn it back on. Like I said...it doesn't help everyone but I have found more relief from this little machine than I foung on many medications.
Four...HEAT can be very soothing for many people with RSD. There are exceptions of course...but it is worthwhile to experiement with different types of heat, heating pads, etc. I know you are probably too sensitive now to handle a heating pad on your foot until you get some more relief from the pain...but another option is a space heater. I find it very soothing and helpful when the pain is bad to elevate my foot and have a space heater blowing on it. Another good this is warm baths with epsom salts. I usually start my day with one of these and it is part of my daily routine to keep the pain levels manageable.
Five...please use this website as a resource for asking questions, venting, etc. It is wonderful for that and I have learned so many wonderful things on here which have helped me fight this thing and regain a sense of normalcy in my life. RSD is rarely the same in two people...so not everyone finds relief in the same things...but the combined experiences of members can really be a godsend. Even the little things like what types of clothing/shoes people can wear, different things they do at home to help with the pain, etc can make a huge difference. But most importantly just knowing that you are not alone and that there are others out there who really understand what you are going through. Even with supportive family and friends and doctors...sometimes you just need to talk to people who KNOW what it is like to live with this every second of every day.
Again...I am so very sorry to hear what you are going through but I am glad you have gotten the diagnosis early and can start treatment ASAP. Don't give up. You have a fight ahead of you but you CAN beat this thing. RSD does not have to ruin your life. Take care, keep us posted, and welcome.
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