crps: what helps besides drugs?
 

Hi, this is a somewhat edited re-post: I posted in the wrong place before.

I've had chronic left foot pain since 2001. It got worse over the years, as I lost more and more ability, and it took seven years and thirteen doctors to finally diagnose me. On the bright side, it's never spread beyond my foot, and I can still walk short distances (not too fast, though). When I flare up, about twice a year, I'm on crutches for 2-3 weeks till it calms down.
I've been losing ability rapidly lately--as of August, no more biking, as of November, no more dancing or standing longer than 5 minutes or so (no more concerts, no more getting onto a too-crowded bus), but my doctors seem to think that I can regain ability through physical therapy. I'm taking vitamins b, c, and d, as well as calcium (my left leg is atrophied from disuse), and I'm doing things like "scrubbing" and deep pressure for desensitization; meditation; and mat pilates and swimming to regain strength. Though it seems to be doing nothing but keeping me in a near-constant state of mild flare-up, I'm hopeful. Has anyone had any luck with any of these more holistic approaches? Can anyone recommend any other non-prescription-drug steps I can take? Massage, acupuncture, diet changes, etc.? Any recommended exercises for lower extremity CRPS? Thanks for any help you guys can give!

Hi Mimichicago,

I'm sorry to hear about everything that you have been going through recently :hug:! I really hope that you can find something that will help you and relieve some of your symptoms real soon and I am keeping you in my thoughts!!

I have CRPS/RSD in my left leg, right arm and possibly left arm now also. I developed it when I was 12 years old after an ankle sprain and I am now 14. Like you, I have tried many treatment options and not that many have worked. I was on lots of very strong pain medications but non worked so we decided that it was best that I come off them. I am currently having Physical Therapy at my local Childrens Hospital on a weekly basis and do exercises at home daily and it does help me somewhat. I have attended 2 intense physical therapy programs and the first one really helped me (I was in a wheelchair beforehand and can now walk short distances unaided) but the second one didn't do anything at all for me. Do you do PT with weights???? When I am doing PT, I use ankle and wrist weights and move my legs up and down and side to side etc and it can really help regain muscle strength in some people. I have the exercises so if you would like me to send them to you, please let me know!!

I have never tried Accipuncture as when I spoke to my Pain Management Doctor, he said that in more cases than not, it can make the RSD worse. I have had a VERY bad reaction to a nerve block that was injected into my RSD leg so I don't think I would be willing to try that. I have heard from some people that have had Accipuncture and it has worked a lot for but please weigh up all of the pro's and con's before deciding to go ahead with any treatment. Everyone is different with RSD and what works for one person, wont work for another so it is really difficult trying to decide what treatments might help.

Have you read Dr Hooshmand's RSD "diet" on his website?? He gives a list of foods that could help with the pain and also foods that could aggrivate the RSD. The link to the site if you would like to take a look is: http://www.rsdrx.com/four_f's_diet.htm

Take care and if you need anything, I am here for you! I really hope you find something that will help you soon and am keeping you in my thoughts and sending you many pain-free hugs!!

Hi Ali
Thanks for getting back! I'm sorry you've had to be brave for so long--I sometimes feel bitter for having gotten this at 18, though I know it doesn't help things at all.
I think I will try out that diet. I do my own "stress loading" with grocery bags walking back from the store, which sometimes flares me but is usually manageable. But yes, send me the exercises when you get a chance.
I didn't have luck with a sympathetic block, just a day of really scary swelling (I overreacted to that and am STILL paying emergency room bills!), but that might be because I got it seven years after the onset injury.
(Btw, I developed CRPS after going for a run in inadequate shoes. No injury, just a run! Still pretty weird to contemplate.)

Hi
 

I too am sorry to hear of your current situation. I agree with Ali, the RSD diet and boosting your antioxidant intake. How about grapeseed extract? I don't know If Hyperbaric Oxygen Therapy is a option for you or not. But that is my current treatment. Along with the things you mentioned, meditation, breathing techniques and trying to remain calm and stress free.
I hope you find the course of treatments that will calm things down for you. If you have any questions about the the things I mentioned please feel free to ask. Di

hi
the diet does help along with the grapeseed. have you heard of cranial scarial i have done in the past and it has helped the key if finding some one that is good and knows what they are doing for sure. if your name serves you and in chicago i know that there ppl there that does this as i used to be seen at rush and they have alot of other contacts outside of hosptial

hope that you are able to get some control and so sorry to hear that its getting worse. but i am a firm believer and keep moving it no matter how bad it hurts this is what has saved my from a wheel chair i believe



carrie

thanks all for your responses! i'm going to try the diet and the grapeseed. if i remember correctly, that's the terribly bitter syrup you put in water, right? ick. wish me luck!

You can get grapeseed in pill form. (thank goodness)

I am so sorry for your situation...My RSD started in my right foot and took forever to dx. I found a CD online called "pain control through emdr" by Mark Grant helped me in the beginning. Eye Movement Desensitization and Reprocessing (EMDR) is a powerful new method of psychotherapy. To date, EMDR has helped over one million people of all ages recover from many different types of psychological distress. Plus it helped me sleep with the pain.

I now do chiropratic treatments and foot detox, both help ease the pain but the pain never is gone just managable.

hi ash,
what is foot detox? and can you tell me more about what the chiropractor does for you?
i don't mind some pain, but when it's in the side and bottom of my foot--its favorite hangout--not being able to walk right (or at all) is a drag (to say the least).

also, angel: i have a therapist friend who's willing to give me discounted craniosacral, partly because he's very new at the process. i'm thinking of taking him up on the offer.

off to find grapeseed extract!

Hi
 

I just wanted to say that PT helped me a lot but I feel you do have to find the Physical Therapist that know all about RSD and they are out there.

Also I was wondering about your shoe issue. I wear New Balance and I find them to be the best for me. My Dr. recommended them and I got them a year or so ago and they help immensley.

I have RSD in my right foot and I also have Plantar Fascious in both feet.

Also you might want to get a parifen bath and use it on your foot. I have one for my hands and it does help.

Another thing I found was meditation and lots of prayer. I was given meditation tapes by my Dr. to help me.

Sorry to hear that you are going through this at such a young age.

Ada