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

Hi MIMI,

sorry you have rsd. I just read this thread and you wonder about alternative.I do self hypnosis which like Ada is basically putting yourself in deep relaxation. Tricky with pain but if you keep trying it can be mastered. I use it everyday regardless of pain level. I wish I could stay there forever but then they would call me a hypnotic addict. My pain meds are quite reduced.

as far as acupuncture I tried only 2 times. Extremely painful for me while placing needles even though I have been a recipient of acupuncture for years for Fibro/CFS and only got pleasure from acu. with rsd acu helped about 10 minutes post insertion of needles, as the OMD removed them I had more discomfort again and while being driven home the pain became much more intense. I have heard of people having really good results though.

The best thing to do would be to try anything that may help.....after researching first.

My hypnosis practitioner taught me in 1997. If you try this make sure you get someone certified.

Wishing you ease in finding things that help.

Debbie

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.


this helped me alot in the beging havent done this in awhile but it defenitly cant hurt

carrie

I was wondering if anyone had tried any hypnosis, there is also some other types of mental type therapies.
One I used for my RSI pain was called EFT {emotional freedom technique}.
the site about it has a free PDF you can download to learn the basics so you can self treat.

http://www.emofree.com/default2.htm

It sounds kind of wacky but it did help with my rsi pain.
I just did the tapping sequences and not the phrases.

EFT Hypnosis Somatics
 

I have been doing hypnosis for years and it helps at bedtime. I also used it when I was getting blocks. The nurses would help me with it also before blocks. Last year I was in an auto accident and went to my massage lady who introduced me to EFT. She got me started with the tapping but the phrases made me nuts to do. So I just do the tapping and it is just another distraction for me.......I will try anything. I also go to a woman who is certified in Somatics. She is a Physical Therapist at our hospital. She does massage also but I learned the somatics from her. You can google it.

The book I have is SOMATICS reawakening the minds control of movement, flexibility, and health.By Thomas Hanna. The photos are not very good I reccomend going to a practitioner and using the book in between for reference/homework.

PS I love this. I was very athletic before rsd. This is the level of athletics I can do now.

in response to the shoe question: i wear gym shoes--new balance for a while, now i've got sauconys and another brand that's slipping my mind--and ugg duck boots for cold weather--all with inserts designed for people with high arches (my doctor-made inserts aggravated the pain so badly i couldn't sleep! that guy was a QUACK). after years of going without heels (except at weddings and funerals, where i had to sit as much as possible), i found a pair of one-inch merrell heels ("plaza bandeau") that, with an insert, don't always aggravate the pain! they are miraculous. i feel like marilyn monroe in them after wearing gym shoes with dresses so many times.
i do some visualizing, but i've never done real guided meditation. my boyfriend's into it, and i think i'm going to try it too. also the paraffin bath. has anyone had luck with epsom salts?
also, can anyone recommend a good physical therapist in chicago? i tried the rehab institute, but i'm not continuing past the brief program i did there.
i'm having a low-pain day today, and i wish you all the same blessing!

Hi after every other specialty I saw a holistic doctor. He had me taking a lot of supplements. Right now the ones I continued with are magnesium glycinate,fish/flax seed,calcium with d,multi,vit c.I have done biofeedback which I found very helpful,guided imagery and relaxation tapes. I don't like epsom salt but do like warm baths but that is just me. I am not sure of a pt person but isn't Rush hospital in Chicago and I had a friend who went to a pain clinic there for rsd so maybe if you call there they can guide you in the direction.

Other RSD help
 

I think its fantastic that your RSD symptoms are limited in area though I realize the pain is overwhelming regardless of the area one is afflicted.
I've been coping w/RSD for 15 years-its everywhere :(
I find massage very therapuetic but can't say it heals.
I'm currently undergoing cold laser therapy and have had great success so far but we did have to make adjustments to find what worked best and in that process took a couple of temporary steps backward but then many steps forward in benefit and relief. Worth looking into.

Besides a great family support system & my faith-all invaluable, I have a service dog. He helps me with stability and mobility and the management of my pain/blood pressure. Keeps me going which in turns improves my function and reduces my pain level. Check out options if you feel you need this support & it works for your lifestyle.

Good luck.

I find the big things are little things. Warm water, relaxation,
good diet, and always watching for the triggers. Ghinko Biloba
is important to me.

I always exercise when I can but anm still not sure I should.