RSD "lifesavers"
 

Hi all!! This forum has been such a wealth of information and support for me already along my relatively brief road with RSD. I respect your wisdom and experience in so many ways and thought it would be interesting to hear from everyone as to what you each find to be invaluable in your day to day life as you deal with your RSD.

I know many of you have mentioned Epsom salts, heating pads, down pillows in car rides, etc.....but are there specific brands or types of things or fabric contents that you find most soothing or beneficial to you??? I would like to start acquiring an RSD "survival pack" of items (preferably finding things on sale a little bit along) that might help and come in useful when the need arises (or better yet......BEFORE the need arises!).

I thought it could be useful to read each others experiences and what works for them, and perhaps we could ALL pick up a few tips we hadn't thought of before.

Thank you all in advance for responding!! :grouphug:

I have found lighter denim pants at Fashion Bug that are more comfy to me. I have RSD in my foot/ankle/calf and the heavy denim drives me bonkers!

I found cotton t-shirts that are big and loose feel best. All of my t-shirts are men's. :) I wear Danskin pants. They're uber soft and comfy! I have a couple of pairs of yoga pants I picked up at walgreens that are the same. With the ones I picked up at walgreen's, you have to remember to follow the wash and dry directions on the label or they will shrink! LOLOL I picked up some men's tube socks, in black which is my fav color, and they're soft and comfy. I wear 2 pair on each foot cause it helps cushion my feet and also helps them stay a little warmer.

Hugs,

Karen

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!!:hug:

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

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 :hug:

idk how many of u are sensitive to the wind/breezes in like spring and summer when its too warm to wear a sweat shirt over ur arms/hands, but i got this idea from the nba players... they wear arm sleeves for what ever reason... so i went to the fabric store and found a soft fabric my arm could handle and got various colors (to match whatever i was wearing) and had my neighbor create my arm sleeves that would be like a glove minus the fingers and go up just past my elbow. they work wonders blocking out the breeze on super hypersensitve days.

andrea
i also have the same problem with the wind and even cealing (sp) fans in the house. i always at the house have blankets or sweat shirt. but last summer i noticed that i stayed warmer its like my rsd has days where i feel so hot and then days were its like antartica only in my body lol you sleve things are ingenius i cant wear gloves or stocking or pantyhose period so i have trouble in the winter thank god i live in the south lol

carrie

There is one seam across the front of the toes, but it is surprisingly soft as well. No seam at the heal area, though. Like most men's socks, they fit a wide range of feet with one size, so I find them roomy enough that the front ends are not pulled tight against my toes.

As far as sheets, there is a "new" (to me, anyway) type that are made of bamboo fibers. My daughter got two sets for wedding gifts and she claims they are very comfortable. I have not tried them, but it is very chic right now. I believe they are somewhat pricy, so I wouldn't suggest buying them unless you try them somewhere or get other recommendations. Has anyone tried the bamboo sheets?

Mike

I saw some bamboo T shirts at a little shop on the coast - they were very soft. I was surprised at that.

Hi Mom! :D

Fresh organic fruit helps me to feel better!

I soak my feet in Epsom salts. I want a bath but the tub is upstairs and I haven't been up there since November just before I fell and hurt my ankle..My dream would be a nice
long warm Epsom salts soak in a bath tub.. That would be heaven..

Soft clothing are a big help.. In bed last night I realized just how much the sheets and the comforter weigh.. It felt like they were pounding me down in the bed.. I was cold but I still kept throwing them off me..

I just started Cranio Sacral Therapy..Here is a link about it..
Oh my goodness, this helps so much.. I have never experienced such relaxation and it helps my pain levels..

http://www.spineuniverse.com/display...rticle784.html

Wishing everyone a pain free evening..:grouphug:

Pauliana

pauliana
i also have had cranial sacriol and it did help alot the problem is finding some that knows how to do it exacatlly i also know that they use it for pelvic pain issues too . i have been tryin to find someone here that does it..


carrie

Can anyone enlighten me as to why my post was removed??? I posted about the only type of sock I could stand to wear.

DebbyV

Carrie,

My Physical therapist has had extensive training in Cranio Sacral therapy.. Check your local Physical Therapists..Here is a link to find a practitioner in your area.. Your therapist should be trained by the Upledger Institute..

http://www.upledger.com/

Best wishes,

Pauliana

Hi Debby,
I don't remember ever reading your post and I looked back in my email records and didn't find your response there either. Perhaps try to inquire to one of the moderators about what may have happened or just repost. Good socks seem to be a HUGE need for most of us. I, for one, would welcome your input. Thanks!! Take care!!

I just thought of another "RSD Life-Saver"! I LOVE Crocs and my Ugg Boots!!! They are the only shoes that I can stand to wear because of how sensitive my foot is!!

Before I got RSD, I thought the Crocs were sooo ugly and I would never be seen in them but they are really comfortable and I have realised that with RSD, comfort HAS to come first before fashion!!!!

I love my Ugg Boots also. I have a pair in brown and black and plan on getting some more when we go to Vegas as I have heard they are a lot cheaper there than they are in the UK. The Ugg's are sooo comfortable and really soft as they are made from sheepskin. It's a bit of a nightmare trying to get them off and on because my RSD leg is rotated out to the side but other than that, I love them!!!

I can only stand to wear shoes for about 2-3 hours at the most because of the hypersensitivity and I CAN'T wear pumps or anything else like that as they are too painful for me so the Uggs and Crocs have been really good for me!!!!

Ali and all,
I cannot remember......do you have the pain sensations on the bottoms of your feet as well??? I am in SO much pain trying to walk even in 1 inch thick cushy slippers....I cannot bear to put any weight on my soles. The bottoms of my feet hurt to touch, but INTENSELY so to bear weight on them. I really am desperate to find some shoes I can wear outside for when I must go out......We tried buying me the shoe inserts to add cushion but those just made my shoes tighter and they don't work for me. I am willing to try about anything at this point.

How do you all deal with the bottoms of your feet hurting??? Do you still force yourself to walk through the pain?? My instinct is to get OFF my feet when they hurt this badly, but they still hurt regardless, though not as badly. I am trying so hard to stay mobile......I am getting to the point where I cannot bear the pain to do so. The last injections I had on Monday seem to have made me WORSE.

My RSD has definitely spread to my palms as well......they are scorching hot to touch always and red. They constantly feel like they're burning......It is so hard to get comfortable to sleep. I keep trying to put them palm down on the cold sheets to soothe them.....it is kind of awkward to sleep that way and I'm always in search for a new cold spot!!

Any "lifesavers" for the above mentioned would be SO appreciated!! Thanks all!!

Dr. Scholls makes wonderful diabetic socks that are super soft & have grips on the bottom so u dont slip. You can find them at Walmart. If I can even wear socks I usually wear these or at least some type of diabetic sock because they are not as tight as regular socks.

Hi MomInPain,

I also get the really sharp sensations in the bottom of my foot. It feels as though I have really severe pins and needles and I get a shooting pain that shoots right down from my hip into my foot. It is SO painful and literally cripples me and brings tears to my eyes for a few minutes. I spoke to my Pain Management Doctor about it and he said it was a VERY common symptom of RSD and it is caused by the nerves misfiring - which I guess makes sense as it feels to me as though there is electric running through my leg!!!

I haven't found anything that helps with this pain so far. No matter how much I try and coushion my foot, it doesn't help and the pain is always there. Soft fabrics like slippers seem to help a little but not that much and I tend to fall a lot in slippers as there isn't enough support in them due to my foot being so rotated to the side and unstable.

I try and force myself to walk through the pain as much as possible. It is extremely difficult and REALLY painful but my PT's and Doctor said that I need to try and keep walking as much as possible, despite the pain. I spent 13 months in a wheelchair and I was SO depressed and there is no way I want to go back there so I try and work through the pain as much as possible ... it is bad enough using wheelchairs and crutches for long distances so there is no way I want to end up in that situation again!!!!

My PT's told me to keep walking as much as possible but to pace myself and not overdo it too much. There is a fine line between doing too much and too little and it's really hard trying to find the right balance. My Doctor is always telling me that to hurt is not to harm but it is easier said than done sometimes and he doesn't understand just how bad the pain is lol!!

Are you on any muscle relaxants?? They can be really good for some people as they can stop the cramping and shooting pains. I have been on LOTS of muscle relaxants and non have worked for me but everyone is different! I've heard somewhere that Lyrica is really useful for the shooting pains also so that might be something worth looking into if you haven't tried it already.

I understand what you mean about finding it really difficult trying to get comfortable in bed. I am forever tossing and turning and wake up often throughout the night due to pain etc. I can't sleep with my leg under the duvet that much so it makes it really hard to get to sleep and now that the RSD might be in both arms, it is even more impossible to get comfortable!! I used to always lay on my left side as that was where I didn't have any pain in my arm but now I have pain in both arms, I am having to try and "learn" to lay on my back which is really difficult!!

I really hope you start feeling better soon - I wish I could help you but I know I can't unfortunately, just know that we are all here for you and DO understand what you are going through!! Please feel free to PM me if you have any questions or just want someone to talk to!:hug:

try this
 

try rubbing different types of things over the spot that hurts not hard,get some one to help you because they cant fell it so they will do it harder than you try this for about a week I'm new to this only had RSD for 3 mouths I started rubbing a dry wash cloth around on it and noe I can ware a bra<its on my shoulder,due to surgery, I know its hard but do it,if you like the clothing you have now and dont want to buy more,this is the way to go.Let me know how it goes for you.

Thanks so much Ali!! Yes.....this is a TERRIBLE pain day. It is my 10th wedding anniversary, too!! I don't even feel like celebrating :(. I am on Zanaflex in the evening.....it was making me SO sleepy to take it twice a day that I cut it back to once, but I may increase it anyway to try to get through this flare. I'd rather be asleep than awake and in this much pain.

They took me off of Lyrica and put me on Cymbalta. It seemed to be working GREAT until my injections on Monday. Now I am worse than ever, and I'm on the maximum dose. I hope this is just due to the weather change (it's raining) and that I wil feel better soon. This is as bad as my pain has gotten so far. The pain pills aren't even working......barely taking the edge off.

You are so right.....it is hard to find the balance between too much and not enough. Some of my pain is delayed......I don't know until it's too late that I've overdone it. I am determined to stay as mobile as I can be. I have four kids.....too much to do to give up!!

Thanks so much for writing. You are such a sweetie and we are all so blessed to have you in our group!!! Are you in Vegas yet??? Weren't you supposed to travel yesterday??? If so, how did it go???? If I lived anywhere near there, I would drive over just to meet you!! Take care of yourself and keep us posted on your trip!!

Ali, Well I did use a newer version of netscape so who knows what happened to the original post. It just disappeared is all.

I wear only Chenille socks. Not the ones people wear for sock slippers. I am talking about socks made out of chenille. They are so soft & you can't feel the seam across the toes at all, I had to look really hard to see if there was one even there. You can't feel any threads at all & every other type of sock I tried I could feel each row of woven thread. Even after this many years, since fall '03, I still can't stand any other type of sock on my feet. Took me forever to be able to desensitize them enough to put anything on them but I did. A GF from the old neruro talk forum told me about them & her daughter doesn't live that far from me bought me my first pair. You can get them at Kohls late fall to early winter. It is the only place wear I have ever found them except once at WalMart in the spring & they were short, like what one would wear in the summer with tennies. I am due to buy new ones this fall & just hope the ones I have make it thru the rest of winter. *LOL*

I also use soft leg warmers on my ankles over my socks in the winter to keep them extra warm. I buy them online as I can't find them anywhere else. The place I get them is really good about exchanging them if the come apart after a couple of washings. I had that happen last fall with one pair. I have been known to also wear them in the summer even in 100 dg weather as now I have a hard time keeping my ankles from getting cold.
This web site also sells arm warmers & several of their leg warmers can be used as arm warmers also. I don't know if I can post the web site here but if you go to google & type in leg warmers a site will pop up in the list titled "Sock Dreams - Leg Warmers" & that is where I buy mine thru. For the most part they are not really expensive. I have one pair that I have had since hmmmmmmmm '05 or '06 & I just love them the most.

The slippers I like the best I get from Carol Wright. I buy mens leather lined slippers (they look like moccasins). The lining looks like sheepskin, but isn't, but they are very soft on my feet. I wear them year round. And they are cheap. $5.99 for one pair & any you buy after are $4.99 as long as it is all in the same size & the same order. My hubby doesn't have RSD but he does have diabetes & he loves these slippers too So we always order several pair at a time & luckily for us we wear the same size now, he has small feet for a guy, & I had large feet for a woman even before RSD hit them. The toes because of the plush lining are always a bit sng at first so I stuff them with dry washcloths to mush down the lining. *LOL* They do have the same type of slipper for women too but they are not wide enough for me.

Other than that I don't have a problem with clothing. Like I said, I did alot of desensitization before I could stand to put much of anything on my feet. I had to have something hold the sheets up off my feet & toes when RSD first hit bercause I could not stand to have anything touch them at all.

DebbyV

desensitization kits
 

I just remembered when I was in the hospital in Germany they sent an therapist to me who specialized in desisitization. She brought a whole kit filled with simple household things for me to try to help desensitize my foot. It had things like a silk scarf, feathers, soft bristel paint brushes, a bath exfoliation glove, a soft cotton bag filled with heated cherry pits...etc. I still use a number of these tricks when my sensitivity increases and thought it might help some you with hightened sensitivity.

I also don't like breezes, even worse I feel like I need to dress like an eskimo in the middle of the summer when I go grocery shopping. I hate the freezer section.

Wishing you all a pain free day.

MsL

Mslday,
ohhhhhhhhhh me toooooooooooooooo!!!! I hate even the refridgerater isles any time of the year *LOL* I forgot & wore sandles one day last summer & I ended up outside with my feet in the sun to warm up. I live in California & it was blazing [COLOR="Red"]HOTCOLOR] that day too, I am talking in the high 90's. But my poor feet & ankles were so feeling so cold. And sometimes I have noticed that when touched by say my husband, my ankles that is *LOL* he says they only feel a bit cool. To me they feel freezing cold.........go figure. All I know what my brain actually is telling me & the temperature they truly are rarely are the same........

DebbyV

I'm sorry you have that too. For me it is like a deep bone burning cold pain. My dr. measured the temperature in my foot with a special tool and it was definately lower than my other foot. Funny my husband says the same thing...LOL

MsL

Originally Posted by Debby
Mslday,
ohhhhhhhhhh me toooooooooooooooo!!!! I hate even the refridgerater isles any time of the year *LOL* I forgot & wore sandles one day last summer & I ended up outside with my feet in the sun to warm up. I live in California & it was blazing [color="Red"]HOTCOLOR] that day too, I am talking in the high 90's. But my poor feet & ankles were so feeling so cold. And sometimes I have noticed that when touched by say my husband, my ankles that is *LOL* he says they only feel a bit cool. To me they feel freezing cold.........go figure. All I know what my brain actually is telling me & the temperature they truly are rarely are the same........

DebbyV


Debby & MSL:

I can really relate. My daughter lives in Miami and I look forward to visiting - not only to see her, but to put my foot in the hot hot sun, or maybe bury it in the blazing hot sand on a beach. Funny thing is, though, that it is only my right foot. The left one is extra-warm. Sometimes I try to "equalize" the temperatures by holding them together :D but I can't find a comfortable position.

I wait until the very end of my grocery trip and then rush through the refrigerator/freezer section of the grocery store. I have a very careful list and pretty much have the layout memorized, so I know exactly where to find things. LOL

My wife also says my foot is just a little cool, not cold. Go figure.

Mike

Stuff that helps
 

UnderArmour tube socks
T-shirts & fleece jackets
ThermaCare heat wraps
understanding hubby
hot chocolate

Atheletic Works pants. They are from Wal-Mart. They not only feel good, they look good.

I agree on hot chocolate, lidocaine patches, heating pads, electric blankets, warm decaf green tea at night.

My right hand and foot is always cold. I shook hands with someone the other day and thought about how cold my hand was compared to his. It's been warm here also so it hasn't been from cold.

Also, warm wind blowing. Yesterday was the worst day I have had in a long time. The wind was blowing pretty hard, even inside I felt it.

I'm still looking for those sheets that you don't feel every thread in.

Also the floor. I had tile put in my hallway last summer and when I step on it at night, it wakes up the sensitivity in my feet. I think I can feel every line in it. Carpet for me is better.

Ada

this seems a very helpful thread with great information:)

would members like this to be a "sticky" thread at the top of the forum so it can always be easily found?

I think that would be helpful for members AND for visitors to be able to quickly reference for some tips. Thank you for suggesting!:)

Epsom salts???
 

I'm reading a lot about epsom salts, I have been through the whole jeans ,shoes, socks dillemas, but I never heard of epsom salts. Does a hot bath with the salts help that much ? I HOPE IT DOES BECAUSE I'M ON MY WAY TO THE DRUG STORE!!

it has helped me alot and i have used them since before rsd for injurys from gymnastics and they helped then and they help now with alot of the cramps and muscles pain i have in my legs

carrie

This response to epsom salts has to do with magnesium.
Some magnesium is absorbed thru the skin.

When you have swelling you have a back up of blood in the small capillaries and this prevent NEW blood from getting thru with its nutrients.

Magnesium reduces swellling by improving circulation to tissues that are clogged up. Also magnesium works against calcium in the NMDA receptor, which can lower pain responses.

Many of us on PN use epsom salts all the time.
(including me)