hi there,

I was able to find this thread while searching for specific symptoms I have....I have sat here shocked, reading every post. I have felt like a freak of nature for 2 years, with symptoms that even my mother and fiance cannot help but question.

I cannot believe what I have read; everyone has the same issues I have- this is the most helpful and validating thing I have found since my injury and diagnosis.
thank you for making this "sticky"- i think it helped Google put it high in my search results.

I cannot express how much this thread has helped me. I have never spoken to one person who truly understood, let alone so many.

thank you to everyone.

That is exactly how I felt when I found this thread! Unreal validating!!

I posted earlier but I forgot to mention the power of positive thought in believing that you will be well and not focusing on the pain (I know it's difficult). I found a course online called "Living In The Truth Of The Present Moment which has helped me a lot.

Bed Cradle or Bed Bar. Particularly in winter can't stand weight of covers on leg. Found a bed cradle online which lifts just a small area of bedding up, put it in the garage last spring and mysteriously disappeared when my son cleaned up the garage. This winter bought a bed bar again online that lifts bedding entire width of bed. Used a heating pad to warm up the air in the space below the bar.
Thanks for all the other tips.

My legs, knees, and ankles are affected. I was diagnosed last summer and wore shorts at that time. I was really worried about what I was going to wear as the weather got colder. I found yoga pants by Exertec for about around $19.95. They are a smooth fabric and have been a valuable find. They also come in capri pants too. You can order these over the net from Elder-Beerman.com. The fabric shows every little flaw but this just doesn't seem that important anymore. I also have found an ultra soft sock made by gold toe. I can't remember the exact name but you can find these at Kohls.

I have also found physical therapy, i.e., stretching, free weights, and aquatic therapy to be a life saver. I've gone from using a walker to actually being functional again (with limitations).

NSAIDs have been helpful with the swelling, and Cymbalta and Lyrica have been helpful with the neuropathic pain. Also Clonazepam eases the muscle tension. The latter three tend to make me a bit tired, however I have equilibrated over time.

Hope this is helpful.

K.

Hello,
I'm new. I hafto admit to cheating, I did not read All the notes in this thread.
But, since I'm old to RSD, I may have some things to add.

I notice lots of folks talking about lose clothing, and that's true. We can't be "bound".
But, I have that thing where I can't stand a cool breeze on my "torso".
For those of us with PERSPIRATION PROBLEMS>
For that I started (in the mid 80's) Patagonia t shirts.
Patagonia calls their product "Capeline". It's Priceless if you have RSD!

They make silk weight to heavy weight. They're polypropelene(sp), made from recycled soda bottles. I found that Cotton is the WORST! It gets damp, and creates a cycle of sweat, chill, sweat, chill.....terrible
No COTTON on my back! Hardly EVER!
Nowadays they're more widely available. In the summer, I don't mind heat, but have difficulty with Humidity. In the winter, I can't stand the cool breeze, like I said, on my back mostly.
So, these garments fit closely, and don't allow any airflow close to the skin. Then, I can LAYER on top!
They make undershorts, and long underpants, socks too, and ALL can be layered.
Patagonia garments are not inexpensive, but they last forever. (Almost).

I am a comfort specialist by profession, and I note that HUMIDITY and BAROMETRIC changes have MORE to do with RSD Dis/Comfort than straight Temperature!
I've studied it, and spoken to others, who aren't as specialized in Humidification / De-Humidification, and well, we can't do much about the Barometer!
I myself, installed in my own home, central air that is slightly UNDER sized, so that it works to DEHUMIDIFY in the summer, more than just Blow cold! No vents exhaust onto where I would sit, or especially, sleep. My heat is by Hydronic Baseboard, computer controlled to respond to outside temperature. (not difficult to do).

Persperation.
I get it on my hands, feet and around my neck and behind my ears, my scalp, and on my back.
I spray my feet with anti perspirant and also my neck, after a shower.
My hands, I use Eucerin constantly. It's a lifesaver! (Just pay for it, it's WORTH it!)

It seems that "closing my pores" after a bath or shower, (Love a whirlpool) is an event. I wear a heavy cotton terry robe, full length, and have a cup of tea, or something ice cold, whatever I need.

I wear New Balance or Merrill trail sneakers. I need support that's comfy.
(I've been seen wearing them with a suit).

I'll be back, with more lifesavers, and my apologies if I've repeated what someone else has said....

Nice to be here.

ASB
Pete

My RSD effects me from the waist down. And It's sad to say. But my guy didn't see me in a dress until after I got hurt. Now I wear dress' every day. For the most part in the winter I have slippers made of mongolian wool. To me, they look like a boot. And I've even seen other's wear them now. Also I wear tights alot. Like yoga pants>? Or sweat pants. They are very soft and managable. And I've seen folks wearing tights with dress' as well, like I do. Kinda makes me feel as thought I've started a couple of new fads. lol. As far as in the summer time. I have slip on shoes. Makes it easier if I can't bend down and tie. With a booty of sorts for sox. And of course my shoes are two sizes larger than I would normally buy. Leaving room for the swelling. The only med I have found that I am not allergic to and works for me, allowing me to be able to walk. Is Lyrica. With the Physician's permission. I fluxuate the mg's. Depending on how I feel. Morning verses night time. I have codeine that I can take if I just can't stand it anymore. And also, at night, I take pamalor. It's a mild anti-depressant that aid's with cronic pain. And it allow's me to get sleep. As we all know the more sleep we get. The better off we are. And it helps' keep me from not having daily crying spells. Since this stuff has grabbed my legs from me. Or the normal function of them. It is kinda sad. Best of luck to you. Soft hugs

Thanks for your suggestions. mine is in my arm, but the med advice helps. good luck and warm wishes!

I'm so happy there is finally more artivles of the success with the ketamine infusions for the RSD/CRPS patients. I was treated by Dr. Schwartzman in Phili in 2006, and had 8-9 months of complete pain remission. I did the followup boosters with a San Diego doctor, but gradually stopped the booster..which I now know was not the right thing to do. Gradually over the last year mybilateral foot pain, burning, crushing sensations are retruening, but I do know that other RSD patients have gone back for another ketamine infusion and had good outcomes. The best part is that I have a doctor here in San Diego that has the outpatient setting to treat patients on the west coast. Most of the other MDs doing this treatment are in Phili & NJ--where Dr. Schwartzman & Dr. Harbut started it. Actually Dr. Harbut & Dr. Correl brought it back from Australia in 2002. Lots of info on the history & treatment protocols at RSDSA.org. You can reach me @ 619-933-5099 anyone wants to connect to the great MD here for treatment. All RSD patients are in unbelievable burning pain, & it is a miracle to have it go away. I experienced that miracle, and it kept me from commmitting suicide..the pain was that bad. Thanks to Dr. S. in Phili & Dr. Harbut!!!

I've had RSD for 9 years.

I use pain meds and my Goldilocks method (jenough use of my effected limb to thwart atrophy, while not using it at all when my pain level starts elevating).

Lidocaine Patches are pure heaven for me in an emergency, but the catch is if you use them too often, they stop working. I never use them unless my base line pain hits a 7-8 level for me. I always use them for car trips more than 15 miles or so, and always flying! My right hand is the center for my pain, but for the last 3 years or so I've started slapping a patch on any part of my body I have the beginnings of new, serious, and unusual pain with and it seems to calm potentially new areas down.

Hyperbaric Therapy worked well for swelling I didn't even realize I had (swelling was hiding how extensive my atrophy is) but it is too expensive for me to keep up right now. I did 25 sessions @ $175 a pop. It actually got rid of the pain in my ankle that I had for years that was like a light case of RSD compared to my hand. If you can afford it, I would try it. If it had really seriously decreased the pain level in my hand I would have mortgaged my soul for more treatment...

As for Aquatic Therapy, I have a dilema, our local pool is far enough of a drive to increase my pain that unless I move (a serious consideration), my Goldilocks method says it's a wash. I will say I get SERIOUS relief from warm ocean water, like I'm a normal human again relief. Has anyone else experienced this???

I bought a used Mercedes, to replace, well actually another really old Mercedes that still worked perfectly (my son's luck) because the vibrations from the older car (that no one else could feel, of course) increased my pain base line signifigantly more the newer (also used ) model. I discovered this while my brother drove me in his car. I have to say hands free locks, and the big ignition key help as well. These seem like such small things...

The last of my oddball tips is I've had major, shall I say, plumbing problems from my pain meds. Nothing prescribed worked for very long, and some caused fun, new problems. After starting to eat 1-2 organic apples a day the, cough, problem is gonzo!