Our TOS Tips - What helps you to be comfortable?
 

I know we have these suggestions scattered around the posts and threads.

One of the members asked if we could get all of the tips & suggestions collected into a single thread and then make it a sticky.
I thought it sounded like a good idea.:)

I also plan to redo the useful sticky thread one of these days, to condense and organize it, so if you notice changes happening there- it's just me:).

So when you have time or when you think of helpful suggestions and tips for staying as comfortable as possible with TOS please add them to this thread.

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These are things I use the most now

Yoga type padded mat
- for stretching/laying out on the floor

Foam roll/cylinder or Inflatable exercise ball
- lay over both ways for stretching of spine and opening chest/pecs

Electric stim or IF stim - helps with muscle tightness/relaxation

Heating pad or Far infrared heating pad

Neoprene thumb, elbow or wrist wraps

sitting-resting position
 

astern gave us permission to repost these great ideas:

Home Neck Traction
 

I have the Edgelow Protocol kit and had that type of PT, my threapist made me a "home neck traction" thing-a-majig and I love to use it and listen to a meditation CD I got from the library.

First you get someone to help you loop the hand towel from the base of your neck to the top od your head- almost like a unicorn :P. Tie the towel into place up there then tape around the tie just to make sure its secure.
Next, connect the theraband to the towel loop so you have a chain.
Then, do the same with a rope, connecting it to the theraband.

How it all comes together:
The rope end goes on a door handle. Put your head in the towel end, with it around the base of your neck and the tied end close to your forehead/ hairline (think unicorn haha) then you sit down close to the door and slowly lay down. Scootching away from the door on your back until the chain gets taut and you begin to feel a pull through your neck. \
You can move away as much as you want. Also if your arms are too sensitive to fall to your sides, you can use a belt to loosely bind them in a folded arm, yet relaxed position across your belly. I listen to Jack Kornfield's Meditation for Beginners Disc 1 because it talks about pain a little bit.
The pull for me is such a relief. I feel my neck elongate and the feeling of compression goes away. My PT said its ok to do this for as long as you want too! I swear it is the best active thing I've done for discomfort throughout my TOS/ RSI experience and I recommend it wholeheartedly!

If this sounds like something you'd like to try and my explanation was too hazy, let me know. I'd be glad to post a picture of the traction thing and what it looks like in use.

I know I asked for new suggestions recently - thanks for the replies.

At the moment I have to ensure plently of soft cushions or large soft cuddly toys to use to support arms and neck. Have an adjustable bed but still need lots of pillows and then some of those microbead cushions under arms and hands, also have a large cushion but animal shaped which is useful as head supports arm and prevents slipping plus the legs help stop my head from rolling sideways which does not help either.
I also try and do the sitting up with the palms upwards etc explained in earlier reply.

I really wish I cold just lie down flat as am sure it would help aleviate some of the traction related pain. I find myself getting lower and lower when seated. Obviously this is not something can do when going out which thus limits going out anywhere. Any suggestions on making car journeys etc comfortable.

Hx

A tip for those who never got comfy with expensive theraputic pillows w/ memory foam:

I've never had it recommended, but I actually sleep with one of those microbead (moshi) pillows at night. It helps me immensely!!! The spandex covering made me feel a little hot but I've slipped it in a regular pillowcase and it works like a champ :D

Riding in Cars-

I know having a smooth driver works wonders- no fast stops or starts, no rough shifting or swerving.
Automatic :D{ just smoother} vs manual shifting:(

Easily adjustable seats - slightly reclined
Padding for seat belt straps
Pillows or pads for arms/ neck

You can get a waiver for the seat belt law due to health reasons - if the belt pressure bothers too much or you need to lay down.

some members make a bed type set up in their vehicle

suggestions for our caregivers (if any)
 

These may not be practical things, but I'm mid-flare so this is fresh in my mind:

1) don't ask me complex questions: I can only give yes or no answers right now.

2) dont ask me what you can do for me (repeatedly): i will ask for help if I need it.

3) Leave me alone.

4) if I ask for something to drink, don't give it to me in a heavy cup or in glass: light-weight plastic, preferably with a lid or straw so I don't spill it in bed. Don't make me reach out to grab it.

5) get me something to throw up in - just in case.

6) I need quiet.

7) please have my phone in bed with me in case I need to call 911.

8) please have all my meds near me.

9) I likely won't want anything to eat as pain makes me nauseous.

10) leave me alone. This will pass. if I'm no better in 24 hrs, call 911 for me.

cheap and easy to make relief
 

The Rice Sock! This might seem like an obvious home remedy, but I just made one and I don't know why I haven't done it sooner!!! From the microwave, it works great as a heat pack. Straight from the freezer, its a icy pack. Make two so you can do contrast therapy :D I got the specifics on how to make one from the WikiHow website here http://www.wikihow.com/Make-a-Rice-Sock
I suggest going thru the entire page, there are some valuable Suggestions and important Warnings. I've been putting a glass of water in the microwave with the rice sock when heating it to prevent fires and add a bit of moisture to the heating process. My screaming tendonitis pain is now more of a chattering pain with the help from my socks. Ask someone to make you one or two today!! It really takes zero skill and time :D

added tip: socks w/o a bended heel works great!

Neck traction
 

Hi

I am new to site, but I would be very interested to see a picture of the neck traction. I believe it would help me. Thanks very much.:)

Cecily, I see you are new to the neurotalk community. Welcome!!! Glad this looks like something that could help. Just stick with me- I hope to get the photo up before next Sunday! :D

tips from olecyn:

1) I now sleep with two extra pillows - one in between my DH and I, at the top of the bed; if/when I roll onto my left side, I rest my hand on the pillow, rather than stretching it out horizontally. The stretch was problematic for the left ulnar nerve/elbow. The second pillow is one I "hug" at night. It's about the same width as my shoulders...so it keeps the shoulders from rounding in and collapsing on the brachial nerve.

2) Chin tucks. Doing chin tucks when driving helps relieve the strain in the upper traps.

3) I remove all hair ornaments from my hair while driving. I found that elastics/pony tails/hair clips put my head in a "chin forward" angle, which increased the strain.

4) I've added a 6" Tempurpedic foam cushion to my bed. It has *drastically* reduced the problems with compression of the arms/falling aleep feelings I had in my arms at night.

5) I now read on the couch with2-3 pillows piled in my lap to elevate the books.

6) Headset, headset, headset.

7) Ibuprofen when I first start to tighten up. Add muscle relaxants when I flare up - stoicism does NOT help.

8) Warmth. microwave socks, heating pads, jacuzzi soaking, a trip to the local spa with a sauna/jacuzzi/masseuse.

9) Biofeedback. I'm constantly checking myself. Am I gripping the steering wheel too hard? Am I cocking one hip while standing? Am I leaning against a table or wall, putting pressure on the arms/shoulders?

10) Reserve yourself. I now have a yard guy, a house cleaner, and get my car washed and waxed by others. It's not worth compromising my health.

It can help, with a lot of work and self-awareness.

Sandi

Warmth. microwave socks,

I'm curious about how you use the microwave socks. On your hands? It sounds like it would be helpful.

I like the microwave socks idea.... I use a pillow between my arm and body when I'm driving, reading, etc. Heck, I should probably use one at work.

If you are flared, put one of those thermacare wraps on your thoracic out let at the base of your neck before you go to bed and you will feel better in the morning. The wraps are expensive for everyday but I find they help with flares.


This is the one I find works the best:
http://www.thermacare.com/products-a...-shoulders.jsp

Sometimes you can find cheaper brands in dollar stores, discount chains, or drugstores in poorer areas.There is also a japanese product that is similar and cheaper but I have only seen it in stores that specialize in household products for japanese people.

Good call Lisa!! I actually use two different things like this that I find in several different Asian markets: Tiger balm, and SALONPAS (see attatched image of packaging). Both are ben-gay-esque but SALONPAS is a patch to slap on whereas Tiger balm is a cream. They are kinda icy feeling and don't smell too terrible.

I have just found the Salonpas patches you mention Thursday - they are on ebay (isnt everything!).

I've just ordered some as they seem quite reasonably priced to me.

Hi Billy, the microwave socks is where you fill a large sock with rice and can microwave or chill it in the freezer....there is an article on here somewhere about it - i made one for hot and one for cold and they are good!

Actually the one I use is different than these, thermacare is a 12 hour heat pad that is safe to sleep with, it's the 12 hours of continuous heat application that seems to bring down the flare.

I didn't find Salonpas to help but I know other people do.

With Pictures now!!
 

Here is what all the loops will look like together and where to put your head.(pretend you are the bunny rabbit and that the traction device is attached to a doorknob.) Please click on the pictures below to see them enlarged!

the right pillow for my neck helps loads
 

I am a FIRM believer in the buckwheat pillow. It is AMAZING for me. I use it to form a space for my head and it supports my neck and my head from going side to side.....then if i want to be on my side it gives perfect support as you can mold the buckwheat to any position you like!!!

I just slept in my brothers bed while visiting him and he has a memory foam pad he got at costco on top of the bed....I noticed that I didn't move the whole night!!!!!!! it was really really comfortable. I think I will invest in one for home!

take care all.....and my motto is heat for all except for migraine then use ice on the back of the neck!

love and hugs,
Victoria:hug:

I too swear by the buckwheat pillow. In fact I was so impressed that I saved up and bought one for my hubby and for each of my kids too(that is 6 altogether). At $50 each it was a bit of money to lay out on pillows, but I say worth every penny.
When I go grocery shopping or to public events, I wear my right arm (the side that is worse) in a sling that takes the weight off of my shoulder. It helps to remind me not to pick things up that are too heavy, and a visual for people around me.

i found them at walmart a few weeks ago. beofre that i could only find them at costco.

I'm in love this week with my new book clip!!!!!
I got it at The Container Store and is called The Original Book Magic- Book Clip & Stand. Its super simple and without the bulk of other book stands. Its like a mutant paper clip that holds down the pages at the spine just to give u an idea of how it works.
I found them online by googling book magic clip and found this site: http://www.ezbookclip.com/index.htm (the prices and checkout page are here)
My thumbs and neck are happy and I can take this anywhere! I give this my full endorsement!!! :highfive:

I like these two book holders:

http://www.reade-z.com/

http://www.readezy.com/ absolute favorite but must order from Australia

p.s. about the Magic Book clip (posted above): someone asked me if it worked on all books.
It works well on both hard and paperback books :D
AND its around $3!!!!

Even better, I like downloading books to my iPod Touch . It only weighs 4 oz, and goes anywhere! But I got it as a gift, not generally an "affordable" item.

Thursday ~ THANX for the past quote.
However, after this last month everything is out the window.
Can't even breathe let alone lay on the floor.

Had Botox on my right side August 6th & my left side decided to shut down immediately & hard.
2 weeks of over medicating & a foreign object going into those rock hard muscles, finally the Botox set in.
Haven't been able to enjoy the right side release.
I feel medicated to the hilt, nauseated, quacked out as Dr. J tries new meds, increases meds, puts in an immediate request for left side Botox to balance out with no response from the insurance company as I suffer each day wanting morphine & go to the ER.
I feel like a druggy wanting to be put out of my misery like a lame horse.
Nothing is working.
I'm so exhausted, so in pain I cant breathe or move.
Catching a wink here & there
Living day after day only by sitting up.
Why? How? can I allow this suffering everyday?
I have been told that the more you use morphine the more dangerous & dependent your body/brain relies on it as an easy out.

Some one tell my husband that its better to get immediate relief to calm all those muscles & stop this misery 24/7. His email address is: phillapuma@aol.com

Astern ~ your summary has been emailed out to my family. Thats how I feel & more.
Cyndy

Cyndy,
My prayers and thoughts are with you.

Please let ujs kno if there is anyh non-food item to bring, since we're coming from the desert, andit's hotter than hades here.

Tam has lived now for one year on the top of the moon,sweating well.

Hi Trix-Are the best ones online? Do any stores sell them?:confused:

A mountain of squidgy pillows, large soft floppy teddies, those microbead cushions. Infact cannot see hubbie for all cushions in bed

Heat around neck etc makes me feel nauseated. Cold, well just don't go there especially on hands. I do use those self stick heat pads to my back/hip they are of some help.

Basically at the moment I just cannot get comfortable whatever I do, I suppose what I mean is I cannot get in a position without any pain.

The axe feeling again.:eek:

I am moaning, I will stop. Best wishes to you all.

Hx

Moan away helen.....

I have recently seen some infra red lamps which are meant to be of some use for soothing our pain/aching issues....they are in argos (sorry US guys, argos is a UK shop) Im sure you can get them in the states too....and prob a lot cheaper too!

Im going to give infra red lamps a try

where to get buckwheat
 

Hi,

Here is a link for buckwheat pillows better than the sobakowa pillow as it has no chemicals on it just the husks. The lady is great I actually met her at a hospital in Ottawa Canada when she was selling them there. her shipping rates are reasonable and I am sure if you said you were on disability or told her of your Tos then you may get a discount....may......it is always worth a try!!!!!!!!!!!!!!!!!!!!!!!!!!!!! But I don't think she inflates her prices.
she actually makes the pillows at a shop in her backyard at home. But it got so big she had to get a wherehouse and work there now!!

http://www.perfectpillow.com/buckwheat.htm

best of luck with it,
love and hugs,
Victoria

I looked all over my city, and all I could find was at the Hudson Bay Company.

Just discovered this one:

I don't have a massage chair but I do have a little handheld massager from Walgreens that costs $9 and I wanted to massage my neck without having to hold it there sooooooooo> I turned it on & put it on my neck, then wrapped a scarf around my neck and it to hold it steady!
It worked like a charm!!! Just be careful of strangling yourself with the scarf :P

Pillow-any advise?
 

Please help? ANYONE EVER TRY THIS Pillow? It's t Bed, Bath, and Beyond

Isotonic® Memory Foam Side Sleeper Pillow

Give your body the well-deserved sleep and rest it needs with this side sleeper pillow. Temperature sensitive, visco elastic memory foam molds to your body, reducing pressure points and cradling your head and neck. It features Outlast adaptive technology, for a cool equilibrium throughout the night. The 2" gusset design promotes natural neck and shoulder alignment. The removable zippered cover has cording for durability and is 100% cotton with a 300 thread count. Hypoallergenic. Spot clean foam. Cover is machine washable. Measures 16" L x 21 1/2" W x 2" D. Made in the U.S.A. 15-year warranty.








Isotonic® Memory Foam Side Sleeper Pillow $69.99 ea.

Lisa had a wonderful post elsewhere about some of the great tools she uses to make life easier.

some products I endorse:
GO 2.4 Optical Air Mouse and Compact Keyboard Suite The small keyboard is good for me because I was leaning to use the left side of the full keyboard AND it frees up the space where the number pad was so I can keep the mouse closer. The mouse can be used on the table, in the air, or my favorite- on my leg. I haven't practiced enough with it in the air...

I also picked up some gloves at walgreen's post-halloween. They're painted to look like Mummy hands and have grip rubber on it so I'm wearing them backwards for better typing. They are working out great!! Warm hands that can still work thru gloves are A+ in my book.
here's what it all looks like:

If you have someone that can sew for you, marthastewart.com has instructions forhow to make them, both the regular pillow shaped ones and a neck pillow.

At the time I saw the show, martha dtewart was selling a form of buck wheat that was esp. good for pillow )no dust or something, I cannot remmber.