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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Re: Please help
Jun 4, 2006
Emily
I went back and looked at some of your past posts to see what sorts of things you are doing for yourself. You mentioned imagry and also homeopothy and gels.

I'll let you know some things that have helped me.

the book/CD combo "Break Through Pain" by Shinzen Young. It is about a sort of meditation.. I guess guided meditation? on chronic pain. He is a monk who has used the deep meditations to help chronic pain people for over 25 years. I have tried to do meditation for years (pre-RSD) - without success. But this book and tape really makes so much sense to me. It has helped me set my mind apart from the pain. I used to get that pain so bad that I WAS vomiting. And, almost passing out. This CD helped me get control of that. I am still not close to mastering the technique, but when the pain gets really bad - say I am at work.... I can go to the restroom, lock myself in a stall, and calm myself down, thinking of this CD. In 10 minutes I can decrease my pain more than taking 2 vicoden. When the pain is really bad... the kind where it makes you sick to your stomach? Well, he has a way of looking at it, a meditation, where you can learn to float within that pain, and well, it's hard to explain here. It has really helped me. And for less than $20. It has kept me working and off narcotics.
Do a Google for "Practical Steps for Transforming Physical Pain Into Spiritual Growth by Shinzen Young" And close to the top of the list should be a page that explains a lot of what the book is all about. If it takes you to a list of articles on the shinzen.org site, just look down through till you get to the one called "Break Through Pain"
I guess I just can't say enough about what this book has done to help me. When my massage therapist gave me this book, I was laying in bed crying and only sleeping a couple hours a day, actually screaming out many times a day, going to work, but crying most of the day. It was just awful. I was almost ready to vomit one minute or pass out the next. I started working with this, and within a month, the nausea was pretty well gone, next went the light head. Most of the pain was still there - I was just dealing with it differently.

going to a really good massage therapist. This is SO important. I went to a pain mgmt specialist at the Clev. Clinic just to be sure my local docs and I were on the right track with my treatment. She told me that since I had been going to a massage therapist since my initial injury... it is probably why I don't have the touch sensitivity or wind sensitivity that so many do. It helps with muscle spasms, tone, so many things. When I first was injured, my RSD set in within a few days, and that's right when I started with the massage - I started with 3 times a week, and now, 8 months later, I go once a week. After I had RSD 6 weeks, I got my "real" diagnosis and went for my first block. The morning of my second block, I went for a massage first. The doc almost did not do the second block because the massage therapist had reduced the redness, increased the temperature etc... all the things the block would do. We did not continue blocks after that. BUT you have to get a GOOD therapist. Find one that does cranial sacral therapy... that at least means that they have had a lot of training.

Baclofen -- this meant so much to me for the electric shock pains, the muscle spasms, over all pain, and also helps you sleep.

I'm trying to go the no pain med route... I have vicoden if I need it.. but I really try to only take it if I am desperate. Since I still work, and drive, I feel I should try not to take narcotics. I usually take about 6 or 8 a month. Instead, I take other meds.. and quite a few, but they all have their part. Topamax ( am trying to phase down on this ) baclofen, Flexeril (another muscle relaxer as I have terrible muscle spasms with mine) and clonadine which helped quite a bit. If there is any way you can try the clonadine, it really helped that deep down pain. It is a blood pressure med, but my doc uses it a lot on people that don't have high blood pressure. Since I do, I can use it at it's highest dose. It comes in a patch, which is catapres, it's more expensive than using the pills... which come in generic, and for me have been just as effective.

Now, homeopothy.... arnica gel helps a bit, but I have to use quite a lot, and it gets expensive. My massage therapist makes an oil for me in an olive oil base that has jojoba oil, then oils of basil, thyme, marjoram, lavender, cypress, peppermint, oregano, and arnica. It gets just a bit warm, and is supposed to work with the "vibrations".. I don't know, she gives it to me, so it doesn't cost me anything, and it is very soothing. The gentle warmth helps the muscles relax, and the oil does help with spasms.

I also find that taking capsules of ginger root, tumeric, bromelain and garlic help with the inflammation. I have never been able to take the modern anti inflammatories like Celebrex, and am afraid to take Mortin and that stuff long term, so I do these natural ones. I also take Grape seed extract, cherry extract (jury is still out on this one.. may be a waste of money) and flax seed oil for their anti oxidents. The Tumeric has some pain relieving qualities as well. Magnesium, Zinc help muscle pain... learned that from having Fibromyalgia for years. Those I take at night cause that combo can help with sleep. I also take a product called Joint Mobility Factors by Michaels. It has boswellia in it as one of it's many ingredients which is also a natural pain reliever. It has Glucosamine and a bunch of other stuff too... I just went to the local health food store, and sat down with their biggest reference book - the one they recommened as the best info - and looked up circulation, inflammation, nerve pain, chronic pain etc.. and then bought the stuff that showed up as helping in most of them. I started them one at a time, each week... I can tell you that I notice if I don't take the tumeric and the bromelain for sure.

Now the gels. Other than the arnica. Oh... also on the arnica. you can get little arnica tablets you can let dissolve under your tounge. I find those are good when you over do it. No, they are not like taking a heavy drug, but they do seem to help some.

Have you tried Lidoderm patches? If you have insurance, by all means, try them. They can be tricky to stick on certain places, but you can use paper tape to stick the corners down if you have to. I didn't think they helped much at first. Then the specialist at the Clev. Clinic said to use them daily for a month before deciding if they worked or not for me. I tried that, and then I seemed to notice that they did help. You wear one for 12 hours. If your insurance will pay for them, get your doc to write them for you so that you have enough to cover your entire area if you can - you can wear up to 3 at a time.

There is something even better, but some people wrote on another board I am on, that they did become allergic if they used this gel all the time. So, I was told to alternate with the lidoderm patches, or not to use the cream 24/7... this cream needs to be made at a compounding pharmacy. I send for mine at a 90 day mail in.. and we get 125 (I think it's grams) a month...
amitryptyline 2%
bupivacaine 2%
gabapentin 5%
ketamine 5%
ketoprofen 5% -- One woman wrote that hers has 10%
lidocaine 2%
in lidoderm base
My doc has for me to use it 3 to 5 times a day, and I usually use it twice a day when I alternate with the lidoderm patches. One pharmacy made this and the cream was thick, like crisco, and the 90 day place made it and it was thinner like a thin salad dressing. It has to do with the base they use.. so if you have trouble applying it, work with the pharmacy on the base they use.

I know so well that nausea from the pain. Try the Shinzen Young CD/Book. Since you said imagry helped you, I think that the Shinzen book will really help you.

Good luck.
Jules

edited for spelling error (I am sure there are more I did not catch!)





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