I also have issuse in my rt elbow (needs surgery, not going there), rt shoulder, neck, and back. They are generally relatively mild compared to my rt hand. I have flare ups in other areas as well, but every day, week, month, are different. Usually there is a cause attached and I'm proactive about all those little alarm bells nowadays.

I started having back spasms after travelling a few weeks ago, that I'm 95% sure was a result of my locking my arm as my pain escalated throughout the day. The Lidoderm patches did nada this time. Three trigger injections later, 7hours of massage and I'm back to baseline back pain--insignificant compared to the HAND.

I had an IV line put in my "good" hand twice in the same spot, a week apart, during a series of blocks, the pain was as severe as the right has ever been and completely freaked me out. I used Lidocaine patches nonstop for a few days and it went away. This is part of my fear of the SCS. Everytime I've been in the head space to try it, WC throws up roadblocks anyway.

I should say my while my left hand is generally pain free, it is just as hyper sensitive to cold now as the right, and with the cold there is burning pain, and the fingers stay colder than normal. Actually, there is zero chance I could tolerate an ice pack on my hands or feet at this point. Even holding a piece of cheese from the fridge in either hand causes burning pain from the cold.

It seems when my stomach gets irritated from the meds, if I don't get it under control quickly enough, fabric touching my stomach starts bothering me... I feel like an old car that needs to be constantly monitored for fear of breaking a part that will send me to the junkyard... But, then I'm thankful none of my other parts have really broken down, ya know?

My RSD is is my Rt. hand and Forearm. It had spread to my shoulder region but with sympathetic nerve blocks I no longer have any pain in my upper arm.
I was/am Rt, hand dominant.

My lifesaver kit;

This is my American express card, in other words, I NEVER leave home with out it.....my Isotoner Medical glove.

Always sweat pants or workout pants that do not have a zipper or buttons (as I can not do either)

My tennis shoes already tied, double not.

Tens unit
Medicine
Pillow (for trips)

Hah! I wear men's underwear, because for some reason, it feels better. Down pillows for sleep and travel. My RSD is in arms, hands, shoulders and now moving across my chest, so I sleep with arms wrapped around a REALLY beat-up soft down pillow. Two soft pillows under head, and make sure your shoulder is UNDER the bottom pillow. Can't stand any clothing that is tight or rough. Have a bunch of loose linen dresses for summer, which I wear with small t-shirts. Pants all have elastic waists, and I have even bought maternity pants from Old Navy because the fabric is soft, and obviously, the elastic panel is comfortable. Buy smaller than you think you are -- they run big. Wear t-shirts under anything rough -- no wool sweater feels good against skin. I also look for really soft socks -- the two pairs of hospital socks I have are the most comfortable -- too bad we can't get those.

Hi, I am new to this site. I've been diagnose with CRPS for 4 years, but I think I've had it longer. It's primary focus is my right hand, but it really starts in my right eye and ends at the bottom of my right foot. So, I have tried a few 'fashion statements' for helping this disorder, too, and I appreciate this question. There are so many good ideas posted already. But, I haven't seen this one: I often wear a large scarf, like pashmini, or cotton, depending on the weather. I can't tolerate even a breeze on my arm, so I will take the scarf, use it as a shawl, and drape it over my arm, when I need extra protection, or my arm is cold. I can also 'loop' the shawl around so that I can prop my arm when it gets really tired. I have found this to be very helpful.
The other ideas mentioned are ones I use, too: TENS unit, adhesive heat pads, hot water bottles, capri yoga pants, shirts with sleeves that are not too tight or too loose, and I also layer my clothing because I can't regulate my heat, either. It is very important to move, too little or too much moving brings on more pain. I dress so I can move.
Thank you for all the good ideas that I've read.

We have a place in maine called the sox market and i buy mens diabetic soxs. They are loose and comfy.

K.

Hi! I recently found "dreamweight cotton" shirts at Express (buy one get one half off right now). they are super-soft cotton shirts that are really flowy. My RSD is in my chest, so they are great because the material is so soft that if it touches my skin, i don't want to cry quite as badly...but it doens't touch much because they move away from your body. they are great! they come in tank tops and short-sleeves. I bought 4 tops and will be going back for more soon because I love them so much!

Also, grandpa's garden inc. is a great company that sells hand/foot mitts (stick in micro and then put right on hands/feet. They also sell these great shawls that you put in the micro as well! Feels great when my whole body is cold, especially putting it into bed a few minutes before i get in...it's long...goes from my neck to my waist when I lay on it.

Hope this helps!

Hi from another (single) mom in pain.
First off I think its best to be as honest as age-appropriately possible with your child(ren). It's so important for them to realize this problem has nothing to do with them. Thank goodness they are there to remind us of what's important and to put a smile on our face!
Now... to what helps me! I guess I'm different from most everyone else w/ RSD, but the only thing that really helps me (besides meds) are ice packs.
I put them on my lower back (most likely the source of my RSD),and what ever area is flaring up at the time. I usually have 3 on me at all times (shoulders, legs, even feet!). Heat only helps when I'm having mega-back spasms! Unfortunately, it's harder too keep ice packs frozen in the real world than it is to keep heating pads/ hotpads hot.
I have found bed rest, massage,whirlpools & stretching to be helpful.
Also, as strange as it may seem, sometime I ask my son to tickle my feet or arms when they hurt badly. The change in external stimuli really helps (one dr. thinks this is why ice helps me!).I think you're quite smart in getting as much info early on & finding out what works for you.

Just be careful about the constant use of ice. After my shoulder surgery, the only thing that would help my arm was ice packs and I used them constantly at home and while at work, round the clock becuase they were the only thing that gave me relief. From back injury rehab therapy I know that when you ice something, the cold impulses and pain impulses compete with each other when traveling to the brain up the spinal cord -so ice decreases the amt of pain felt. I thought the same applied with my pain after shoulder surgery.
I don't know if that was what triggered my CRPS or if it made it worse than it would have been without constant icing. Since then I've read that it can exacerbate CRPS or cause it. I've found that info in several places including Dr Hooshman who specializes in CRPS. I've pasted what he said and the source of the quote here.

Excerpt: Abstract. Complex regional pain syndrome (CRPS) is usually caused by a minor injury, and requires proper evaluation and multi-disciplinary treatment addressing the multifaceted pathological processes that evolve during its chronic course. Patient’s age, the nature of pathology, and mode of therapy influence the outcome of treatment. If at all possible, surgery, ice and cast applications should be avoided. There is a desperate need for research in proper management of CRPS.
http://www.rsdrx.com/Spread%20of%20CRPS.pdf

Dear Pacugirl -

Amazingly enough, I am also almost certain that icing my shoulder after my rotator cuff injury and surgeries either caused or may have significantly contributed to my RSD.....my pain was severe, and ice helped numb things up. So I used it all the time. From Nov 2006, when I was injured, through June of 2008, when I was diagnosed with RSD. I even had an ice machine that I could fill up and plug in and leave strapped on my shoulder throughout the night so I could sleep....

Ugh....if only we could turn back the wheels of time and undue things, huh??

Sandy

Some things that I have found helpful:

Soft fluffy socks with all the elastic removed and which are soaked in laundry conditioner in a sink after every couple of washes to keep them soft. We also tumble dry them to keep them fluffy. (I have had RSD for 8 years and it's very severe and full body. I can't stand anything tight, especially on my legs, arms and neck).

Silk duvet. This was really expensive. However, the silk duvet is far lighter than normal down duvets and is really warm. Although I find it almost impossible to let the duvet touch my lower legs I can let it touch my thighs whereas with a normal duvet I can't bear it at all.

Very soft fleecy blanket. This blanket is very light and was very cheap from primark. Over time I have gained quite a few of these blankets and even gave one way to a woman I met in hospital who had RSD in her leg and the blanket was the first thing she'd ever been able to bear on her leg. It is very soft and very light. I now have a range of different colours and sizes.

I have a large range of pillows and one of my favourites is made of Tempura foam and is sculpted to support my neck. I also have a body pillow. I have a lot of pillows in bed and use them for positioning so that I can lie in a fully supported position with pillows under my head, shoulders, arms, knees and feet.

Microwavable bean bags with lavender.

Splints to stretch out some of my joints - they are painful to wear but less painful than having bony contractures broken.

Pyjamas - like many of you I find pyjamas really comfortable. I tend to wear pyjamas from Primark as they're cheap, made of soft fleece and I can cut the bottoms off of the pyjama trousers. There are no cuffs on the pyjamas which makes them more comfortable and I can tolerate them better.

I find any bumps in wither my wheelchair or the car agonising and the pain often makes me pass out. I therefore wear a neck brace when I'm in my chair as if my head is kept still I'm less likely to pass out (and I have very little head control anyway). Even before I lost control of my head I used to wear either a soft neck brace or a neck cushion when travelling as I found it reduced my eye pain, headaches and back pain that normally worsen significantly whilst moving around.

Smelling salts which we can use to bring me around if my pain is too bad.

A mixture of emergency medications including rectal diazipam, oral diazipam, oramorph, oxynorm and ketamine with permission from my pain doctor to increase if the pain becomes unbearable.

Leg warmers - I sometimes wear these as my legs are almost always ice cold. My favourites are almost a metre long and bright yellow. We removed the elastic from inside the leg warmers and I wear them over my feet and up over my knees.

When it's cold I use an electric "sheet" which is like an electric blanket but instead it is a mattress overlay. It can sometimes really help.

Aqueous cream can sometimes help with the itching feeling I sometimes get, especially on my legs. Needing to itch but not being able too because of pain can be awful. I find that if we just chuck on huge handfuls of aqueous cream then it not only stops the itching but also helps keep my skin hydrated.

Ipod and book. If I'm travelling I HAVE to take something to read or listen to with me as it works as a distraction. Audiobooks are fantastic for this if you have problems holding a book.

Just some thoughts.

Love

Rosie xxxx