No I can't!

I was going to start a new thread, but then decided to just put it here.... I saw something (again) in arthritis magazine when we were at the docs office that really set me off again. It upsets me so much when I read or hear stories that say, "I have RA (or whatever chronic pain condition it is) but I did such and such and so can you, because you don't have to let the pain control your life." It makes me want to scream and slap the person who said/wrote it! No, that's not true....it actually makes me wish I could beat them to a pulp! Why? Because they make it sound like people like me:

• are wimps when it comes to pain (and I most certainly am not!) or
• are just plain lazy (again, I'm far from that!) or that maybe
• that we like all the attention we get by being in pain (what attention????), or
• they're not really trying or not trying hard enough, etc.

None of which is true!

The lady in the magazine with RA was running 5 miles a day "even though she was in pain". Good for her! I'm happy for her. But, she didn't have to say that anyone could do it if they wanted to because that's simply NOT TRUE!!!!

I've TRIED! Really tried! For over 3 years I tried specifically to increase my strength, endurance and abilities. Back then I could actually walk fairly quickly for a half hour a day on a flat surface. Now, after those three or more years of trying to increase everything, if I'm careful and hold onto a cart, I can walk for maybe 10 minutes when I'm at my very best. After that the pain keeps building until within another 5 minutes I can barely stand up. It's difficult for me to stand up long enough to cook Bruce's supper in the evening or do the dishes. If I tried to "run", I would literally be on the ground in excruciating pain within about 2 minutes, and no amount of trying would enable me to increase the time or distance I could go. Not to mention that my "run" wouldn't amount to much more then a weird looking walk at this point. (yeah, I tried it like an idiot)

They say they write those kind of stories to encourage us, but they're not thinking it through. They can't rely on an editor to spot the errors because 99 times out of 100, the editor won't know a thing about living with pain. All they know is grammar etc. If they're going to write a story like that though they need to make it very, very plain from the very start and again at the middle and again at the end, that there are many pain patients out there that simply cannot do any more then they already are. Not just for the personal sake of those like me that can't do more, but also for non pain patients that read stuff like that and then look at people like me and think that we're just lazy, faking it, enjoying the attention, etc.

Instead of helping people they're hurting a great number of us! And I'm sorry, but I'm really tired of it. It's hard enough to get our families, friends and acquaintances to understand our limitations, without having to then turn around and deal with something like that.

Not to mention our own personal emotional health. I suspect we all question ourselves. At least I always have. I've always questioned, "am I doing all I can do?", "Could I possibly do more?", "Is there something I could do differently that would help me?", "Do I really, really need these narcotics, or could I possibly get along without them?", "Am I just kidding myself?" "Maybe I really do want attention and am doing this because of it and just don't realize it...?"

You know what the result of all those questions have always been? That I always wind up doing way too much and being in a whole bunch more pain then I would have been if I hadn't.

I honestly believe that every single one of us does our very best to be all we can be, and do all we can even though we have to deal with this pain. It's like I told my kids recently in a letter I wrote them explaining to them what my limitations are, I don't let the pain rule my life, but I do have to deal with the pain and make concessions because of it, because it's a reality in my life, whether I like it or not.

Everyone is a little different. We have different thresholds of pain for instance. That doesn't mean that one of us is in less or more pain then another one. All that means is that it takes less to cause one of us to be at a level "9" then others, but we're both at a level "9", so both feeling the same kind of pain.

We may have pain in different places and/or for different reasons, and that can make a huge difference in what we can or cannot do physically. It's not really a matter of "how many things we have wrong with us" because over time, a pain patient generally gathers a list of diagnosis's a mile long, but rather how they affect us, and that can be different for us each. Just like the lady with RA who wrote the article that got me upset. Yes, we both have RA, but she either has very little knowledge of what RA is and how differently it affects people, or else, regardless of what she says, she has a very mild case of it.

It's not a matter of how much pain we can "stand" before we have to stop either. There comes a point when pain isn't the only issue anymore; Our bodies are not in pain for no reason, so when they get to a certain point, and the person refuses to stop regardless of how much pain they're in, their body begins to do whatever's needed to stop them. They may fall or pass out or whatever. After all this time, I know what my limits are. I'm way too stubborn to abide by them because if I did, I literally would be unable to do anything at all, so I continue to push myself. BUT, only to a point, because I've learned what happens when I go further then that.

I would never tell someone that lived with pain that they were letting their pain rule their lives or whatever, just because they couldn't pour their own cup of coffee, much less run 5 miles a day! Nor would I suggest that if they just tried harder that they'd be able to do more. Instead, I'd assume that they were doing their very best already. To me, saying those kind of things is every bit as bad as telling someone that they'd be healed if they just had more faith.

Sorry, I just had to get that off my mind. It really upset me.

Tips and Tricks to relieve/reduce pain

I thought it might be a good idea to have a thread like this where we can each share different things we've learned that help relieve or reduce our pain even a little. 

I've now tried all the different products during a flare up and the one that works the very best, that I now love and can't live without is:
 



These were MUCH easier to use then the OraMoist! Another difference is that you use two at a time of these instead of just one of the Oramoist; but these stick instantly and they stay stuck whereas the Oramoist didn't. Plus, the best part is that these work the way they say they will and you get almost a full four hours of a nice moist mouth! I was lucky if the other worked for an hour when my flare was at it's worst. Another big difference to me was that the oramoist didn't always totally dissolve and regardless of whether they did or not, they left you with a nasty gooey feeling in your mouth that you literally had to clean out with a cloth or tissue each time you used them as they left a residue in your mouth. (and that residue did not keep your mouth moist) With the Xylimelts however, they dissolve completely and leave your mouth feeling fresh and clean--no yucky residue!

I did have one funny thing happen to me with the Xylimelts last night though. I was having a dream that I was eating dinner and woke up and realized that I had started chewing on the xylimelts dislodging them from my cheeks LOL So, using my finger, I just stuck them back on my cheeks with no problem and went back to sleep laughing at myself. The only thing my chewing had caused was that my mouth was very moist and I had to swallow the extra saliva I'd worked up chewing them I thought about replacing them with new ones instead of putting those back in place, but it was so close to time to get up anyway, that I just went back to sleep. I figure this occurred when I'd had the xylimelts in my mouth for at least 3 hours already and only had about an hour to go on them anyway, which just served to prove again that they lasted as long as advertised. I hope all my experimenting helps someone else besides just me, but I'm sure glad to have finally found something that really helps! Oh, I wasn't able to find this locally so had to order it from Amazon, but it came within three days and wasn't expensive at all!


My biggest trick is still the soap I have to admit. I'm once again keeping a bar in my pants leg as the spasms have started up really bad in my leg again..only now instead of my calf, it's in my thigh. Soap will stop cramps, spasms, and pain!

 Heat helps a lot for osteo or Rheumatoid arthritis pain, and these are especially made for arthritis because they reflect your body heat back into itself and it says too that they kind of massage your hand or whatever area you're using it for. Now I'm always cold, so I wasn't sure it would work for me, but it does. Here's what I mean about those made for arthritis; they have them for knees, ankles, wrists, hands/fingers, elbows, and the lower back too.


 
The Anti-Arthritis Gloves are gloves designed for use by individuals with arthritis or other hand and wrist disabilities. The gloves are designed to help relieve pain while performing everyday tasks. There are lightweight half-finger gloves,and three quarter finger gloves.  They offer gentle controlled compression to ease pain and stiffness of arthritis and carpal tunnel syndrome and control swelling. The stretchable fabric creates therapeutic warmth that increases circulation to the wearers hands fingers and wrists.

 

The Most Comfortable Slipper You’ll Ever Own When your feet are in pain, your whole body hurts! With these fabulous miracle comfort slippers, your feet will be surrounded by unbelievable warmth and soothing magnetic therapy. Includes 4 built-in 800 gauss magnets, believed by many to improve circulation and soothe tired, aching feet. Complete with non skid rubberized panel for safety, as well as built-in ventilation panel to keep feet dry and healthy. Fashion import made of cushy acrylic, comes in men’s (navy) fitting up to men’s size 12 and ladies’ (pink) fitting up to a ladies’ size 9.

 Another little trick I found for my elbow pain due to RA that really helps, especially when I'm typing is to put a little pillow on the arm of my chair. I have a little cross stitch pillow that my daughter Jennifer made me when she was in high school. It says, "Thou wilt keep him in perfect peace whose mind is stayed on Thee." But it's the perfect size because it's 11 inches long, 8 inches wide, and not even an inch thick. Amazingly it actually stays on the chair arm without any problem too and gives my elbow just enough padding to that it's not killing me

One of the things I've found that helps me with lower back and leg pain is lumbar underwear.  Yeah, lol, I know it sounds funny LOL but they really do help. Don't get me wrong, they aren't a "tremendous" help by any means, but they do help a little and every little bit counts! Here's a picture of what I'm talking about:



Amazingly they're actually pretty comfortable! My workers comp insurance paid for them so I know if you have workers comp they will pay for them. You can get them in a number of places on line--just do a search for lumbar wear. 

 I've also done a number of "little things" to help keep the pain down, such as rearranging my cupboards and even my fridge so that the things I use the most are within easy reach and I don't have to bend to get them. Plus since I'm weakest in the mornings, my husband started a routine of making sure that the gallon of milk wasn't too heavy for me to pick up when I first wake up. At first we just used a small cream pitcher but that didn't hold enough if I wanted to have cereal in the morning as well as coffee lol so he started getting two gallons at a time. He used the first gallon till it was half empty and then left that one for just me and started using the second one. By the time "my" gallon is empty, "his" gallon is about half gone and it's ready for me, so then he goes and buys another gallon for him to start on. It's amazing how much little things like that help!

 I have a list of "things that help when I'm in pain" printed out and taped up where I can always see it. On it are listed these things:

My Pain Toolbox:

Pray, pray, pray!

Study the Bible!

light--turn on all the lights in the house and open all the shades! (it improves your mental/emotional outlook which will help you feel better physically as well)

Praise and worship music--turn it on and turn it up! (same as above)

sing along with the music

move around--(don't just stay in the same position if you're hurting badly, moving around a little can help relieve the pain, even if it's just going into a different room and sitting in a different chair for a few minutes or laying down for a few minutes etc.)

bounce on ball-- (I have a large 65cm exercise ball that my physical therapist asked me to get to help with my core strengthening exercises. I found that even just sitting on it and bouncing gently, improves my mood greatly because I generally start to giggle, LOL and again, if you improve your mental/emotional mood, the physical follows)

smile and laugh! read jokes, look at funny pictures, anything!

shower--(or soak in tub) sometimes a hot shower will help ease the pain

massage (massage from hubby or friend or a massage therapist--I got my workers comp insurance to agree to pay for me to have 2-3 massages a week during my really bad flare ups)

moist heat--you can get things that will do this and just put them in microwave, for me, my physical therapist does it for me

(for other people, ice packs help alot, so I'll add that here for you guys, but they don't help me...)

heating pad

core strengthening and stretching exercises

back brace, knee brace, arthritis gloves etc they all help some!

small footstool under my desk so I can put my feet up

cushion on arm of my chair to cushion my elbow (arthritis) you can see a pic of it here, it's really for use with a mouse but works great for my elbow lol

desk chair -- my desk chair is one of those ergonomical ones that really helps my back alot and is the most comfortable place I can sit in my house! Obviously everyone can't run right out and buy one, but we got mine at Walmart for a pretty cheap price, so if you keep looking, I'm sure you can find one too.

small round pillow in bed that goes between my knees--it helps tremendously, in fact, so much that I'm just shocked! It's the same length as a regular pillow but it's round and very squishy so it's very very comfy!

a blow up pillow for my back that my therapist gave me to use when sitting in a chair and it really helps a whole lot!!!! I can now sit in a regular living room chair or recliner, much longer!

Getting dressed every day. --The temptation for me is to not get dressed every day. Partly because it's such a chore and hassle and it hurts. But I force myself to do it anyway. I generally have to wait for several hours after I wake up, before I can move enough to do it, but then I do get dressed. The reason is simple: I've found that when I get dressed, I feel better about myself. I've found that even though I wear clothes that are comfy, that if I put on clean clothes, that look decent, even though they're comfy; brush my hair, etc. that I feel better about me in general. That in turns translates to feeling just that tiny bit better physically too. Originally when I first started having to force myself to get dressed, I told myself to do it for Bruce. I felt that he at least deserved to have a wife that looked half way decent when he got home from work. I still think that's true too, but over time realized that it was actually helping me both physically and mentally feel better.

Make an effort to socialize/fellowship with others every single day.-- Again, I realize how impossible that can be for many of us. For me, I mostly get this from being here on FH with you guys as I can't really get out much. But again, I've found that talking with others, be it in person or here on the board, helps me to feel better. I think it's because it takes my focus off of myself and puts it on other people, and that's what helps. It also keeps my brain working which is good for me too. Plus, we know that the Lord says that the more we focus on others and try to encourage them or help them, the better off we'll be ourselves, and I found that to be quite true. So the less I feel like talking, the harder I force myself to come and post anyway lol; and it always helps. I think another reason it helps too is because it helps distract me from the pain itself somewhat.

play computer games, read, or something like that to distract yourself from the pain



Next, on my computer desktop I have this written out on a note pad that says "Read when you're in pain"

The Lord has planted me where He wants me,
He has assigned me my portion and my cup. Blessed is the Lord who gives and takes away!
He is my God and in Him will I trust.

Remember: Hang in there, the pain WILL diminish and it WILL go away.... talk to the Lord and wait on Him. Find ways to distract yourself. You do NOT need more pills!!!!

WALK; take a shower; use the PATCHES; pray; praise the Lord with song! Take IBUPROFEN & FLEXERIL; use the heating pad!
hold belly button in!

BREATHING EXERCISES!

Idea: try drinking more WATER....

Remember that on your bad days, the pills really don't help anyway. But the day will pass and tomorrow will come.

2 Corinthians 12:9-10 But He said to me, My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christs power may rest on me. That is why, for Christs sake, I delight in weaknesses, in insults, hardships, persecutions, difficulties. For when I am weak, then I am strong.

I TOLD you the pills don't help!!!

But if you're going to take them, wait at least an hour and 15 mins in between doses. If 2nd dose doesn't work, wait till it's been at least 4 hours and 15 mins since 1st dose.

Anything not done from faith is sin.

He whispers in our ear, "I love you my child, and I am here with you, lean on me; together we can get through this."  Then He vows that although we may be in sorrow or pain now, that in the end our reward will bring us tremendous joy! Hang on to Him who loves you more than we could ever imagine. Let Him take your burden and carry it for now. Think instead of the day that really will come, probably sooner then we think, when we will stand in His presence and receive our rewards and be continually filled with His joy and love!



One last thing I did: When you live with pain pretty much all sensations associated with your body, are painful and I wanted to change that. I especially had a hard time making myself go to bed at night because I knew that I was going to wake up in tremendous pain, so I avoided it like the plague. (which of course didn't help) So what I've done is turned my bed into the most luxurious place in the world to be! I did it over time of course because it takes money and that's something most of us, including me, don't have much of. I found by accident a blanket that was so luxurious and soft, it just made you want to cuddle up into it. It's made of micro fleece. This material though is softer then cashmere and it's not expensive! So I got the blanket, then eventually got sheets and pillowcases made out of it, and then my favorite style of pj's made out of it! Now when it's bedtime, I look forward to it because I'm in luxury! You won't believe how soft it is, it's just incredible! I also got one of those heated mattress pads from ebay for a great price which is something I can't imagine living without now, especially since we live in New England. Last but not least, I finally found a pretty bedspread so it even looks pretty. So now bedtime is like going to an expensive spa!

Well that's pretty much what's in my toolbox besides my prescription pain meds. But I want to use those as little as possible. I look at all these things like saving pennies, because each of these things alone, may not do a whole lot. A penny by itself may not be worth much, but when they keep piling up, they can add up to quite a bit!

Edited to add: Here's another program that I use every day that's really helped me alot: Smart Diary Suite 4.5 Medical Edition
You can get the free version and if you keep an eye on giveaway of the day, they offer it once in awhile for free!

Soap will stop cramps, spasms, and pain!

 About 6 years ago I ran across something quite strange on line, that claimed that a bar of soap could stop cramps and spasms.  Since I had a private forum for people who live with pain and many of us suffered from cramps and spasms, we decided to try it and see if it really worked.  Over the years, I'd say well over 75 of us have tried it and it worked for all but one person.  Of course I don't know just how much of a chance they gave it, but even if it didn't work for one person, the fact that it's worked for all the rest of us is just amazing!  We also discovered that it worked for arthritis pain as well.  I was the first one to try it for that, mainly because I was just plain desperate.  I have both RA and OA as well as Sjögren's and was in tremendous pain and just couldn't take it anymore.  So I thought, why not try the soap...it certainly can't hurt!  And lo and behold, it worked!  I Used to take a LOT of flexeril, the max dose, and since I've been using the soap, I rarely take any at all, and when I have, it's just half the dose. All of us who are using the soap, now simply can't live without it and wouldn't want to! We've each introduced many other people to this marvel including members of our families and they all use the soap now.  I've even told my pain doctor and my primary doctor about it and they tell other patients!  At this point, I'd say there's well over several hundred folks that have tried the soap and had it work for them now.

Some of the diseases people use the soap for are Osteoarthritis, Rheumatoid arthritis, Sjögren's, Restless Leg Syndrome - RLS, Leg, foot, stomach Cramps, Muscle Spasms, Periodic Limb Movement Disorder, stomach cramps when you've had diarrhea or the flu, menstrual cramps, just about any kind of cramp or spasm anywhere in your body regardless of what the cause is. The only kind it doesn't seem to work on is when the person is having them because they're deficient in something like potassium or something like that. We've even had people use the soap to stop pain from a car accident and it worked for that as well!.

If there was just some way I could get this info into the hands of everyone that has restless leg syndrome, or leg or foot cramps, or muscle spasms, and convince them to just try it, I'd feel like I'd done something really worthwhile with my life!!!! This really works! I don't know why, I don't know how, but it does! The members of my site and I have been using this soap remedy since October of 2007 and we just love it.

You may have to try more then one brand of soap, but it will work. Here's a little bit of what I originally found on line so many years ago:. 
 
I just LOVE being able to do away with the muscle spasms just by having a bar of soap in my bed, or here in the chair with me, instead of having to take the really strong muscle relaxers! My doc has me on the strongest possible dose of muscle relaxers, 20mgs of Flexeril. Of course it has quite a few lovely side effects, even though I've been taking it for 9 years.
Soap Under the Sheets for RLS, Leg, foot, stomach Cramps, Muscle Spasms, Periodic Limb Movement Disorder, etc.

Q. Several months ago I went to my neurologist for my yearly physical and told him about a problem I had with my legs "jumping" at night and waking me up. He gave me the technical name for it and wrote me a prescription for Mirapex. I then told him I had read in your column about putting a bar of soap in the bed, so he told me to try the soap and fill the prescription if it didn't work. I still have the unfilled prescription sitting on my bathroom vanity. When we went on a trip to Yellowstone, I took my soap along and slept fine every night we were gone. A. This home remedy mystifies us, but we have heard from many readers like you. The risk of unwrapping a fresh bar of soap and putting it under the bottom sheet where the legs will be is almost zero. The cost is far less than a prescription. Positive responses from other readers experimenting with Ivory soap remedy:...... http://www.peoplespharmacy.com/archi...leg_cramps.php
Reader Comments I read about this home remedy in the newspaper. I have indeed suffered from RLS basically all of my life, and I am over 50! My mother always told me I had "growing pains" -- HA! When I read this, I thought it was the silliest thing I had ever heard of. I truly believe in home remedies, but just sleeping with a bar of soap?!?! Well, let me assure any and everyone! It WORKS. I have now had 5 nights of sleep - in my own bed - no walking around, no moving from one place to another just to find comfort -just pure wonderful sleep. TRY IT!!!
I saw an article in our local newspaper about 6 months ago about putting soap under the sheets for RLS and tried it immediately. Since that time I have not had a single leg cramp. I use Caress.

What a wonderful, really inexpensive treatment that stops RLS.
I have suffered from severe leg cramps for years. I read about the Ivory soap, tried it and I have not had a leg cramp since.

I have severe Periodic Limb Movement Disorder (PLMD). Have used Sinemet and Mirapex over the last 8 years, but stopped each due to side effects. Currently unmedicated and miserable with the leg movements at night, waiting on test results and the docs to decide next line of defense. Someone mentioned the Ivory soap. Well, I tried it in a wrap around my ankles and under my feet in a double socks, but what seems the best is I have four bars across my lower bed so that no matter where I move my feet, one is near. If a movement wakes me, I move my foot to touch the soap, and fall right back asleep. Hasn't been a cure, but certainly has made it more tolerable and less sleep robbing. Can't begin to understand it. The most logical theory I've read is one wondering if the leg movements are like electrical currents, maybe the composition/density of the soap absorbs the brunt of the charge. (Like rubber and lightning.) Would love to understand why, but just having a degree of relief is good enough for me.

I have tried several kinds of bar soap for leg cramps. First being Ivory. I learned that I need to change the soap about every 3-4 months. I buy them at the 99 cent store. 3 bars for for 99 cents is the best investment for a good nights sleep. It took 3 nights before it worked, but that was 2 years ago and no leg cramps for me now. I use the cheap nylon anklets or cut the foot off old panty hose to slip the soap into that seems to help keep it in place. I use two bars under the bottom sheet, one on each side near my feet.
for more comments go here: http://www.peoplespharmacy.org/archi...leg_cramps.asp

Give it a try! I would recommend a few things though that I've gathered in researching this:
 
1. Always start with a fresh bar of soap. Don't use one that's been opened before. Keep in mind that although it usually works immediately for most people, some have had to wait up to 3 days before it started working.  Yes, take the bar out of the box and unwrap it.  You can stick it in a sock or pair of knee high panty hose, or whatever, or just toss it on the bed as is.
 
2. If one brand doesn't work for you, don't discount the idea, try another brand. Remember, it's still not costing you anything as you can use the soap in the bath if it doesn't work in bed
 
3. I've heard that neither Dial nor Dove work for most people, but some of the women in my group use Dial and I use Dove!.  Some people swear by Ivory, but a few said it didn't work for them. I don't recall hearing about any other specific brands not working...but that could be my memory too. (Note: I use Dove under my sheets now and it works great for me! I use the rose scented kind cause I like the smell and it helps relax me)
 
4. Speaking of the smell, the first bar I tried that worked was Irish Spring. While the scent is nice, it just wasn't something I wanted to go to bed and smell all night, so I specifically looked for one that had a scent that was both pleasing and relaxing to me. That's how I wound up with the Rose scented Dove. BUT, I discovered from another person that tried the soap that for people who have asthma or COPD etc, that the scented soaps may make your breathing more difficult. AT least if you have the type of asthma that can be brought on by scents. Therefore, if you have asthma, you should probably start with a soap that's "unscented". Keep in mind though that some soaps that are "unscented" still have a "soap" smell and you don't really want that either. You want one that's really unscented. Unfortunately I forgot to ask them which brand they're using now, so I can't give you any tips on that.
 
5. realize that you're going to have to replace the bar of soap in about 3 to 6 months. (that's a very approximate time) For some reason it will stop working at some point during that time, but all you have to do is grab another bar of soap and replace the one in your bed with the new bar.
 
6. Another thing I've learned about it over the last year of so, is that "how much" soap you'll need to use, depends on how many things are wrong with you, and on if you sleep with someone else and if they also have problems with spasms, or cramps.

I still have no idea what it is in the soap that stops them, but for the purpose of trying to explain this, let's call that ingredient X. For example: I have RLS which means I get spasms in my legs all the time. Some nights they're mild, some nights they're "medium" and other nights it's just horrid. I also have problems with my back which causes me to have muscle spasms in my back too. OK, what I found is that ONE bar of soap at my feet worked just great for my legs, and no matter how bad the spasms were, it would stop them, IF I wasn't having back spasms. BUT if I was having back spasms, then it wouldn't work for my legs very well either. It seemed like it made the spasms in my legs a little better and even my back spasms a little better, but didn't take them away. Out of frustration one night, I got up and grabbed a second bar of soap. Immediately ALL my spasms stopped! I did some experimenting after that and have determined that the amount of the "ingredient X" you need from the soap, goes up in direct proportion to how bad your spasms are and in how many places in your body they are; and that if someone else is in bed with you, (including pets) and they have spasms, then they are also using up some of your "ingredient X". I also have RA and when that flares up on top of everything else, I wind up with a bunch of soap around me lol, but it works, which is what counts!

It's very interesting to "play with it" to find out just how much you need etc. But the reason I'm trying to explain this is to let you know, that if one bar of soap isn't taking your spasms or pain away 100%, then just grab a second bar! Another thing that also seems to make a difference is where you put the soap. I've found that the soap at the bottom of my feet, doesn't work as well for my back spasm, so since I have the spasms in both places pretty constantly, I now sleep with one bar at my feet and one bar by my back and that does the trick quite nicely.

So if you have spasms in more then one place in your body, or you spouse has them too, you may have to play with the number of bars in the bed and with the placement of the bars too to find what works best for you. For me, I have to have the soap touching me-or to be more exact, the sock or fabric bag that it's in has to be touching me. 

I would just hate to have someone just give up thinking it didn't work for them, when all they needed to do was either add another bar or move the soap into a different position.  On a lighter note, one friend tried this and it worked for her problems as well.  Her husband has RLS too but didn't believe the soap would work and didn't want anything to do with it. Well he'd wake her up when it got bad and she got tired of it, so when he'd be asleep, she'd slide another bar of soap over to his side of the bed by his feet, which of course stopped the spasms right away, LOL.  Since he's was asleep though, he wasn't aware of it, and still doesn't believe the soap works. RFLOL
 
7. You can have the soap in your bed just as it is, or you can stick each bar of soap you use into a sock or a small cloth bag. I have mine in cloth bags because it makes it easier for me to find them when I climb into bed. I just feel around at the bottom of my bed with my feet till I feel the bag, and then just grab it and pull it up some so my feet are touching it. Then I grab my other bag and stick it near my back.
 
8. One last thing I'd like to mention is this; if you have spasms during the day you can still use your soap. Since I have the spasms during the day too, I can always just grab one of my bags and stick it in the chair with me and that takes care of the back spasms, or stick it on the floor by my feet and that takes care of feet and leg spasms. Another member told me that she either uses the small hotel sized bars or cuts a bar in half and puts one on each side of her leg inside his socks during the day. That way it controls the spasms even when she has to walk. Other members just stick the soap in the pocket of their slacks. If you use your imagination, you can pretty much use the soap anywhere you are and anywhere you go. It's really great not to have to rely on a medication that has side effects anymore! 

I can remember before I tried the soap for the RA pain, sitting up at my desk one night, crying because I was so afraid of going to bed. I knew that as soon as I fell asleep, the pain would come back with a vengeance, and I'd do anything to not go through that again. I've learned tricks to prevent it from getting bad during the day, but I can't do those things when I'm asleep. Then I thought of the soap...I didn't have anything to lose, so gave it a try and it worked!

In order to prevent the pain at this point, I'm now up to 6 bars of soap on my legs and one or two at the bottom near my feet every night when I go to bed.

I was thinking about that as I was getting ready for bed last night and how hilarious it would look if anyone could see me. I don't know if I can explain it well enough for you to picture it, but this is my routine when both of my knees and both hip joints are hurting from the RA/Sjögren's. I have 4 bars of soap that are each in a knee high panty hose. They're nicely wrapped inside the knee highs so that it's nice a smooth.

I have 4 bars of soap, each wrapped like the one you see in the middle, which is just a single knee high panty hose, and 4 inside 4 different stretched out knee high socks. ( have "extras" for when other joints are hurting at the same time)

 I took another pair of panty hose and cut the toes off of them because I can't have anything touching my toes especially if it's tight and I cut them off at the top of the thigh too, so they look kind of like leg warmers I guess. I slip one of those on each leg and then put one bar of soap inside the left one just above my knee and the next one goes about 3 inches higher. Since they're inside the panty hose I cut off, the panty hose holds them in place all night and the two bars - one just above my knee and the other about half way between my knee and the hip joint, stop any pain in those two areas. That just leaves the hip joint and that's where the soap in the long knee high socks comes in.

Remember how I explained where the hip joint is? For anyone who didn't see that: If you put the palm of your hand on your knee and then move it up your leg until you come to where the line of your underwear would be around your leg, that's where your hip joint is. Here, I made a graphic to show everyone:

I take the long knee highs that have the soap in them and I wrap it around my leg at the hip joint so that the soap is laying directly on top of it, and tie it in place. So now I have 3 bars of soap firmly affixed to each leg so that they can't move or come off even if I roll over during the night. Then of course there's at least one down at the bottom of the bed to help prevent any restless leg syndrome from bugging me. Sometimes there's two because they have to pull double duty there when my toes are giving me problems with a lot of pain. (who would have ever thought that a toe could ever cause such severe pain???)

Anyway, when that happens, I wear loose footies to bed and put a bar of soap in the bottom of them so it's right under my toes. So, depending on where the pain is, or the spasms are, that's where I put the soap. When it's my stomach, I just stick the bar next to my stomach and my underwear holds in in place. Necessity is the mother of invention, and if you use your imagination a little, you can come up with all kinds of ways to get the soap to stay where you need it.


Believe me, I would absolutely panic if I didn't have my soap!

Do you know someone who lives with chronic pain or illness?

Do you know someone who lives with chronic pain or illness?

 I recently read a really great book called "She'll never make it through the night - an extraordinary story of faith, hope, and the power of prayer", By D Hedegard. Inside it says:

Even at times when the Holy Ghost is moving and miracles are happening, godly men are not immune from sickness. We serve a God who heals. But we also serve a God who—as Elisha experienced, as Hezekiah experienced, as Paul makes reference to—sometimes uses sickness for his glory.

This book was both heartbreaking and heartwarming and most surely an inspiration and challenge to all who read it. I heartily recommend it. But now I'm reading another very good, challenging and inspirational book called, "Wednesdays were pretty normal: A boy, cancer, and god." By M. Kelley, which I'd also recommend.

But they're not really what this post is all about. They just gave me the idea. Both authors show how their lives change and as I was just reading about how people you're close to seem to drift away after awhile, I realized that I wanted to talk to you guys about that. All of the members here in the pain forum have experienced that very same thing when they became sick or disabled. People they were close to for years either slowly or suddenly, just stopped calling or coming by, and no longer responded to messages. I experienced it as well.

Usually when we go through that, we're pretty new to the whole disabled; pain; illness thing ourselves and don't know what to expect or what's going to happen to us. No one warns us that our friends won't be our friends for long, so we have that hurt to bear on top of our pain and illness. The stories I've heard about this are heartbreaking to say the least.

As this author and others point out though, it's not necessarily the "friends" fault. Most folks simply don't know how to deal with or relate to people who are in constant pain, ill, and disabled. Especially not when that person is someone they knew as an active, healthy, go getter. And believe it or not, statistics show that most of us who are now disabled were very active people before the accident and/or disease put a stop to it.

As I'm sure you're aware, we have a private forum here for those who live with pain. It's our hideaway, where we can talk without having to be concerned about whether or not others will understand, or whether or not what we say will frighten someone or make them uncomfortable. Out here, on the main board, we may say something like, we have a doctors appointment, or a check up etc. In there though we can talk about the appointment - why we're going, how bad the pain is now, our fears, our hopes, whether the doctor is good or not, what we like and what we don't.

I've always felt torn about it being a private forum though. We need the privacy in some ways, but in other ways, we need it to be out in the open, because more then anything else, we need other people, people who still have what we call, "normal" lives, to understand us. But when we do talk about it a little out in the open, we can tell that many people are just plain uncomfortable with it. We don't blame them for that. We were the same way ourselves once. After all, what do you say to someone that's in constant pain every single day???? How do you deal with it?

So tonight I thought, well, why not try and explain to other people what we'd like them to understand? That it's OK to be uncomfortable, but don't try to hide it - say so! Tell us you don't know what to say, because that way we can reply and share our hearts with you.

There are many very good articles written by people like me who live with pain about what life is like for us. If you know anyone online who lives with chronic pain or illness, then you most likely have heard an expression about "the spoon theory" or "spoonies". It's a way a lady made up to explain to a friend what her life was like now, and it resonates with all of us.

To put it simply, she explained that it's as though every person with chronic pain or illness is given 5 spoons at the start of each new day, and they must get through the entire day using only those spoons because they can't get anymore. Everything we do though can cost us a spoon. It depends on how our body is reacting that day, and how well we slept that night. So, on a good day, if we get out of bed and get dressed, that costs us 1 spoon, so now we only have 4 left for the entire day. But, on a bad day, just getting out of bed may use up one of our spoons, and getting dressed a second one, leaving us with only 3 left for the rest of the day. And so it goes through the whole day for us. What we used to do without even thinking about it, we now have to think about and decide if it's worth doing or not and if it is, then how many spoons will we lose doing it? If you've never read it, I really hope you will because it will really help you understand what people like us deal with on a day to day basis.

You can read the story here in English and they also have it translated into Spanish, French and Hebrew. The link for those is at the end.
http://www.butyoudontlooksick.com/wp...-spoon-theory/

Another good article is called Understanding Chronic Pain
An open letter to anyone who has a chronic pain patient in his or her life. and can be read here:
http://www.healthcentral.com/chronic...-287065-5.html

Finally, there's one that many have already read here:
The Challenge Of Living With Chronic Pain

Please know though that the most important thing to us is that you understand that we're not looking for sympathy or pity. What we want more then anything in the world, is simply that you understand us, and the only way that can happen is if you're willing to talk about it with us Yes, it will be uncomfortable at first. Believe it or not, it's uncomfortable for us too. We don't want to scare you or upset you so we're unsure of just how much to say, what parts we should talk about and what parts we shouldn't, etc. So you see, we have fears too.

Mostly, we just want you to love us and accept us just the way we are, for who we are now. This whole dialog thing may scare some of us even more then it scares you. That's why the author of the book I told you about said it wasn't always totally the other persons fault when they stopped calling. Sometimes we're the ones to clam up. If we do, just reassure us that it's ok, you're still going to love us. Don't worry if we cry. Just hand us a tissue or three or four .

Most of us with chronic conditions, spend our time around other people both online and in "real life", trying to pretend to the best of our ability, without actually lying, that we're normal and have normal daily lives. That's why we have the private forum here on FH, so that the masks can come off and we can be real for a little while. We don't want to be different. So for us, we're learning to accept our lives the way they are and deal with things the way they are now.

Often, one of the hardest lessons for us to learn, is to accept help from others and even harder is to actually ask for that help. Most of us are used to being the ones that helped others and we don't like being on the other end of the stick. Even after almost 14 years, this is still very hard for me.

Even if you don't know anyone that's living with chronic pain or illness, I still hope you'll read those articles, because sooner or later you'll meet someone like that and then at least you'll be a bit ahead of the game.

If you do know someone who deals with chronic pain or illness, then please, tell them you want to understand what they're dealing with every day. Tell them you're aware that it might be awkward at first for both of you, but that the Lord told us to bear each others burdens and you can't do that if you don't know what the burden really is. Make a deal with them that when the conversation starts to get to heavy, or overwhelm either of you, that you both will agree to simply say so and end the talk until the next time you're together. And be sure to set a date when you can be together again soon!

Don't be afraid to tell us if we start to get to technical too. Because of our condition, many of us have done a great deal of research and learned all we can about our condition, so we can get carried away and forget that you may not be familiar with a lot of the terms that are now second nature to us. And don't feel badly for not knowing those terms, because we didn't know them either until we had to learn them out of self defense.

Promise each other that you'll both be honest about your feelings each day and that you won't try to hide the truth from each other or even yourselves. Hold each other accountable, pray with each other and always invite the Lord into your conversations. I know that helping each other and protecting your friendship this way will please the Lord too, for He tells us that what we do for each other, we do for Him as well.

I can promise you one other thing as well. The awkwardness you may feel at first when you begin discussing this with each other, will quickly pass. Not only will it pass, but no matter how close you were before, you will find you're even closer to each other now. Finally, please realize that this "conversation" won't continue forever. Once you have a good understanding of what your friend is really going through every day, then it won't be needed anymore. At that point you'll find that you both now have a real friend that you can talk to about absolutely anything. One you can laugh with and cry with, without being uncomfortable.

May God bless those who are willing to stretch themselves beyond their comfort zone for the sake of a friend in pain.

PS: There is something you could easily do to help many of us when you post on line. Many of us also have trouble with our eye sight. So it helps a great deal when people make their posts bold. We can make the text larger on our computers ourselves (those of us who have figured out how to do that) but we can't make it darker. So if you're interested in helping us out, that would be one quick and easy way you could do so.