Hello Mom in Pain,

I'm a mom - age 58. After more than 30 years with CRPS, IvIg was my life saver. I'm pain free and drug free now! No more involuntary muscle twitching and cramping either! I receive 20 grams of Privogen every 21 days - sometimes at 18 to 20 days, depending upon how I am feeling or what is coming up in my life.

Iv glutathione helps too.

Before IvIg, Lidocaine patches were a great help. They are soft and kill nerve pain. I used to cut them up for smaller areas...wrap them around fingers, etc.

Sleeping on earthing sheets helped me too. See www.earthing.net. At first try, the sheets hurt. I tried again and found that after about 15 mins, they were helping make the pain decrease.

Gyrotonic and gyrokineses movement therapy helped enormously. The type of movement helped take pain away. It is used in hospitals in Germany and Japan.

I found that movement of the right sort made a huge difference. Since my feet were too painful for much standing or walking, I had to find ways to move that did not involve being on them. Lifesavers were riding horses, gyrotonic, and a stationary bike with a comfortable (well, we know that is a relative term for CRPSers) seat.

I still wear the soft, bamboo clothing I began wearing all the time when I was in pain. It doesn't wrinkle, dresses up or down, and it is as comfortable as the best pajamas. So, I sleep in them too. See www.yaladesigns.com.

I tried to NOT travel by air, because I hurt much more for months afterwards. Since recovering, I've not yet stressed my body with air travel. When I used to fly, I always went in a scooter and wore dark glasses to reduce the neural stimulation by lights and movement in the airport.

Wishing you success in healing!!!
ambika

My left foot/calf/knee are too swollen for any shoe or bootie (I also found the soft chenille sock works for work). In a chair as I can't walk just now. But I'm excited to try the Epsom Salts! - I can handle warm water/not running like a shower; NO cold water! I would love to get a shoe on-any shoe. My lower leg is cyanotic(sp?) VERY cold to touch but will suddenly turn bright red & start to BURN WHAT WORKS FOR THE BURNING?! Any tricks to stop it? Or calm it down?! Would appreciate ANY ideas on that problem!
- so far for me: VERY soft flannel/brushed flannel, velvet/velveteen (I'm going to look silly come summer though), silk, satin.BEST: bare leg/foot, no blankets/anything touching. My Chai Tea helps me to relax - with one piece of chocolate as my reward for surviving another hour/day ;-); my sound machine also works to distract me, I can focus on the repetitiveness-that's calming as well.
THANK YOU FOR THE WONDERFUL IDEAS!
Please? Suggestions for when it's burning? I would appreciate that so much!

My Dr. has me taking 750 mg. of magnesium and thanks to Ms.D's reply now I know why! I did not know the connection. It must help with the burning pain, but also helps with constipation when I take pain meds. I have a "TENS" unit that helps and oddly enough a warm heating pad over flannel helps me too. I have yet to figure what sets off the burning pain because I guess I'm fortunate that it comes and goes.
It's all such a mystery - We need a cure!

I have found that taking a daily magnesium supplement helps so much with the muscle aches, cramping, severe charlie horse type knotting up I get, swelling and coldness I have from the RSD. I use Epsom Salts in my bath, too.

It would be nice to find a cure, but since there is still so little known about this disease, still, don't focus on that. Focus on what you can do to manage your symptoms so that you can live as comfortable as possible.

I need my buckwheat booties, as my feet and legs will vasil constrict.
The other option is a bucket of warm sugar water! ( lots of sugar)

Car vibration is a tough one.. I have tried taking small bits of Klonopin and Baclofin, but RSD still reared its head. Think I should have taken more of the med's!

I have to have my limbs and feet covered. So light long pants and top.
Socks are a must!

I skizzle with your favorite calming music is a must!!

Great Thread!
My 10yr old daughter had CRPS in her right ankle and foot, and just as it appeared to get better she got multiple problems and pain in her abdomin - bladder kidney and bowel problems and significant right flank pain which has reduced her mobility hugely, more than the foot did. This has ultimitley been diagnosed as CRPS migration.
When we go anywhere I have:
Heat packs, microwavable or the chemical mix type when on the move.
Very soft blankets and pillows to snuggle, plus favourite bear.
A soft sponge ball, that she uses as a distracter when in severe pain, and crushes if its unbearable, as she was causing herself thumb joint injures before by crushing her thumbs when in agony.
A palm tablet computer as distracting games using her fingers do seem to calm pain spasms.
Worry beads - as above.
A ball massager - used in unpainful places as a distraction.
Stories on CD - again takes the focus off the pain.
A range of stupid talking games that are very silly and can make her laugh that seems to help.
The pains will happen, and we find ways of getting mentally away from them before they really set in and reinforce themselves works 9 out of 10 times.

I've had three foot surgeries for the same thing - arthritis of the big toe joint and lowering the second toe. The first surgery didn't help much and the nerve to the second toe was damaged. The second surgery the joint was fused and the second toe lowered. I had five screws and a couple of plates. The pain just didn't improve as time went on. Ten months later I saw a podiatrist who said she would remove the hardware. She discovered the hardware was too large for my foot and that the foot had been fused at the wrong angle. I walk primarily on the third toe and have the callus debrided every couple of months. My PCP recommended orthotics. I mentioned that to the orthopedic doc. Orthotics have come a long way since I tried them last about ten years ago. Things were still too uncomfortable and I went back for an adjustment. The man didn't do what the doc suggested. He struck out on his own and I benefitted! He was able to make it possible for me to sit on my garden bench and do what I love to do without foot pain.

Now I'm waiting for the rest of my body to catch up! Bending and stretching muscles that haven't been in a long time has created more pain, but a small accident has forced me off my feet and in bed for a week - hopefully time for those muscles to heal and when I go back I will be more respectful to them and be grateful for small times of bending and stretching, being kind to myself and taking pain meds along with resting appropriately.

I found a great pair of sneakers with a wide toe box and able to hold my orthotics comfortably. If you are interested in the brand I'd be happy to contact you about it.

Not ever been one for chat rooms, but I am thrilled to know there are others out there who think about sock softness. Will continue to follow.

We once saw a survey that people with CRPS in their feet wear CROCS instead of shoes. Ever since my daughter stopped wearing shoes and socks, and only wears traditional CROCS (with arch support) she has reduced pain in her feet and it has helped tremendously. She has not worn socks and shoes for 2 years, even in winter because they make a big difference in pain reduction. It is not easy to deal with winter in CROCS but it's worth it to reduce her pain, swelling and other CRPS symptoms. I wish everyone the best and it is so nice that we can all talk and understand each other.

I've had RSD for just over 10 years. It started post surgery, after a right shoulder scope. Entire arm, hand, shoulder, and upper right quadrant of my torso, but within two years had spread to my entire body. Having big feet has always created a shoe struggle. Now add the swelling and sensitivity of the RSD and it was a nightmare for a long time. I have rarely gone out to try on or buy any type of clothing in the last 10 years and have found for variety, consistency and decent EASY return mail process, that QVC has become my friend. I do not watch, but I do shop for clothing and some household helpers there.

I took a risk and tried QVC's shoes department one day when they had a special on RYKA shoes. I found not only up to size 11 but WIDE options as well. Both of these options now very crucial. RYKA makes Slip Ons, which were a necessity for about 8 years, but they also have NEOPRINE shoes, that are amazing because there are NO INSIDE SEEMS!!!! They seriously slide on like butter!

I need to clarify here that RYKA makes shoes for women, BUT, since I'Ve had RSD, Ive had to at times, wear men's clothing and have a pair of men's leather clogs to accommodate my big old swollen feet when I had nothing to wear to my father's funeral. And yes, hey looked awful and pathetic, but none of my beautiful shoes, pre-RSD would have fit on my feet and I could not manage anything with buckles or laces, so I gave one up for the team. I'm sure everyone here has had to suffer a little humiliation to manage their pain. So, given the color selections include Khaki, Navy, & Black, men with a size 9 or smaller foot can find options from RYKA. I would bet too that since I've Ben wearing these for at least 3 years, there might be men's shoe Manufacturers out there also using NEOPRINE. I can vouch for RYKA's and their slip ons having no seams, they are smooth and padded soft, and a HUGE LIFESAVER!!!

Another huge helper for my swollen and icy feet are fleece socks. They tend to be expensive, but last several years, wearing them without shoes, around the house. I have had people on ETSY make them and bought them from a variety of sources. The last two years though I have found them on SIERRA TRADING POST at great prices. They sell a 3 pack in the men's sock department, solid colors, for about $3 a pair!!! I think the brand of the 3 pack is WYOMING WEAR. They are Ridiculously CHEAP, considering most places sell them for about $12 - $15 a pair. Sierra Trading Post sells discounted outdoor wear, their pricing is fairly heavily discounted and if you look around on line, you can easily find discount coupons and they send you more coupons with each order.

Hope these feet solutions are as beneficial to others out there as they have Ben to me.