Great thread - thanks for starting!!

For me, if I am travelling any long distances, I like to travel in my pyjamas! I know it sounds strange but they are the comfiest things I have to wear and I can just get changed once we arrive at our destination! I have lots of comfortable snuggly pj's that I just couldn't live without at all!!!! Me and my mum had to travel 4 hours to London twice in the summer last year for hospital treatment and they were really useful and comfortable. I don't like anything touching my RSD leg at all so I usually have to travel bear-foot or wear some really loose shoes as my foot tends to swell up a lot!

I also love soft pillows. I sometimes sit on them if my pain is really bad and we are travelling a long distance as they get rid of some vibrations from the car - although of course, it's impossible to get rid of them altogether!!!!!!

My Doctor is currently making me an "RSD Survival Pack" that I can use when we fly to Vegas on Sunday. My PT's said that he was going to give me lots of anti-inflammitary meds and some extra pain medications in case the flight makes my pain worse (which i'm guessing it will!). I'm currently not on any pain meds as non of them worked for me and the side-effects outweighed the benefits so we decided it was best to come off them but I take pain meds when travelling to try and combat any flares/spreading etc.

I hope you find something that helps you soon - everyone is different as to what works and it might take a while but you will eventually find something that really helps you!!

Since my worst pain is an ultra-sensitive foot, I am always looking for the ultimate sock. The best I can find right now are a Hanes crew athletic socks. I looked on the Hanes site to try to find you a model number, but can't narrow it down based on the information there.

The socks I got have a red HANES logo beneath the toes and are extremely soft! They only come in white but who cares? I got them at Kohl's and they were six for $11.00 (approximately.)

This list is a great idea. Sometimes we know what we want by seeing it, but if we can keep it written down, others can even help us by shopping and getting the right product.

Thanks!

Mike

hey mom
i basicly besides work live in sweatshirts and t shirts not to mention PJs i found some at walmart that are super soft and dont bug me as bad. as far as sheets i dont have a top sheet and i have at least 400 count sheets on our bed i usaually get these the day after christmas shopping as they were only 25$ versus 90-100$. also i do the epson salt alot i get it at walgreens they have lavaender as well its with the first aid. if i have to ride in the car awhile i do have to take my muscle relaxers we went to savanha this summer and it was a very very long drive and it drove me insane. i felt horrible the whole time i was there . bass like you said those hanes socks are all we buy with the red lettering i wear the mens one because they arent as tight on my lil feet. as most dont know i am very short and very little my 8 year is as big as i am but the big socks dont hurt as bad.

hope this helps someone

carrie

Great thread...Thanks everyone for sharing your softness tips from socks to sheets. Very helpful..

Ali enjoy your trip to Vegas!!!

Great Idea Mominpain!

For me I could not live without my hot water bottles. I have a couple with nice soft covers. I travel with them and they really come in handy especially on airplanes. Beyond that my survival kit contains the following items:

Any fabric soft and warm (I always have to warm my bed before I get in)
Microwaveable bean bags, available at most drug stores
Sheep skin slippers, hand made from a local crafts person
Down filled soft covered booties from Brookstone
Hot wax machine, available at most drug stores
TENS machine
Exercise bike, ball, & therapy bands.
Qigong DVD for stress relief (a gentle exercise focused on breathing and energy flow)
Breathing exercises
Stretch Pure & Simple DVD
Meditation & guided imagery CD's (My favorite is called Mind Food Pain Control by Hemi Sync because it has helped me to learn how to turn down the pain signalshttp://www.new-mind.com/HemiSyncPain...management.htm
Hot tub & sauna
Exfoliation glove or soft bath brush (for desensitisation) available at most drug stores.
Wooden massage roller for my foot because my fascia tightens
For emergencies I also carry those heating patches called Tensor (they say they work for 10 hours but I never got that much heat from them, perhaps because my RSD foot is typically ice cold) I bought mine at Walmart.

I stopped using electric heating pads because I had one that caught on fire.

Wishing you much joy and peace.

MsL

"I stopped using electric heating pads because I had one that caught on fire.
"

Oh my gosh! I didn;t know that was possbile! I had one where the controller got hot, and I did think about it. That is aweful! Where you asleep?

I heard about something like this many, many, years ago, but I don't think it's very common. Any electric appliance can catch on fire, and ones that produce heat (toasters, coffee pots, slow cookers) are especially prone. Manufacturers these days have safeguards built in to most of their products and, of course, the instructions always tell you to regularly inspect for any damage, frayed areas, etc. And NEVER use pins to hold it in place. That is a sure fire way to cause a short circuit.

A much more common problem with heating pads is getting burned because you fall asleep and/or do not have a good sensation of how hot it is getting. The one I bought a short time ago has a timer to shut it off after a pre-determined amount of time. I don't think I will ever use another heating pad without this feature.

Mike

Yes......really everyone......keep these ideas coming!! This is GREAT information to have!!

Karen, I wear my hubby's old white t-shirts too......they're HUGE on me and have been washed a million times so they're soft and they breathe better when I sweat (and so easy to change in the middle of the night if I wake up drenched). Ali, I wear pj's almost ALL the time now.....big, loose, soft flannel......but I've only had RSD since it's been cold......I am DREADING this summer! I always wore capri pants with sandals......now my feet are ghastly red, purple and blue. I don't know WHAT I'm going to do???

Also, I use down pillows and change my pillowcases often (perhaps 2-3 times a week since I'm on them so much) to feel "cleaner" when I'm sweaty or in pain. I am sensitive to odors and fragrances too, so I get nauseous of they don't smell good to me (or if the detergent has TOO much fragrance). I only have ONE set of sheets that is currently soft enough, so I'm in the market for another set.....I will have to be careful to get the "right" blend and thread count. I have bad luck with them "pilling" which feels like GLASS in the bed to me, as do crumbs. That was a great idea about the mens white Hanes socks. I'll look for those. Do they have seams on the toes that bother you??? That is my problem with most of my socks......my TOES hurt so much and the seam feels awful on them. Shoes are another huge problem for me. Even my nice "walking" shoes hurt my feet and cause spasms and jabbing pains. I haven't quite brought myself to wear slippers out of the house yet!!

Anyway......lets keep this thread going!! This could be so helpful to all of us who have RSD as well as for those who love us (and want some great gift ideas of what to get for us!!!).

Thanks again for replying!!!

MsL, I have one of those microwave bean bags too! I forgot all about that. My friend got it for me as a xmas present a couple of years ago. It's one that filled with herbs, I think it's lavender and something else. It really feels good on spots that are really hurting sometimes. I also get aromatherapy at the same time and it's quite relaxing! Thanks for putting it down. Is yours a scented one too or just one of the plain?

Hugs,

Karen

Hi Karen,

I have a couple, one plain and the other with lavender. I love them both and often use them both, especially on day like this. We have a terrible cold rain right now and it gets deep into my bones so I am off to use my hot wax machine on my foot right now because of that. The hot wax is the only way to get deep penetrating heat for me. I know some here probably can't handle that intensity of that type of temperature but I have always loved it, even at my worst most sensitive state. Once I get past the first dip it is all good from there.

MsL