What helps you?
 

Hello all,

I wanted to ask everyone about things they have found helpful in managing pain on a daily basis. I'm not asking about medications or therapeutic remedies offered by our doctors or PM's; what I am really asking about is what have you found helpful in your own journey to fight back the pain & promote mental health? I thought maybe this might be helpful for all of us :) in case there are things we just hadn't thought about.

I'll start it off by offering what is helpful to me: Upbeat music:cool: while riding my indoor recumbent for exercise.. my current favorite station on Pandora is "Athleta Power to the she" during my ride.

Next up..

My pets. I have two rescue dogs and a cat. They give me a reason to get out of bed in the morning so that I can feed them, let them out and play with them. And today I took my dogs for a short walk with me (one at a time). I also like watching football with my husband (and son when he comes to visit us), when my team's not loosing. (That would exclude today.)lol.

I am so proud of you for getting out!!!

Not once but twice.. :D. Did it boost your spirits?

:Trapeze 2::You-Rock::Dancing-Chilli:

Thanks Tessa. You gave me the inspiration to do it. It wasn't easy, because I'm so out of shape, but it did indeed boost my spirits. Mentally and physically. Thanks again for the support and great advice! And congrats on the Seahawks awesome game today! (at least one of our teams still remembers how to play football) lol. I hope you have a good night.
P.S. You rock too!

My piano and cello :)

Also takes me away from my place and time just that little bit - it's always better, for a little while at least...

"If music be the food of love, play on..."
William Shakespeare. King of Quotes.

Bram.

My sons brats abd books

Music!!
 

Oh Bram.. you made my day!! I just signed up to start Piano lessons next week, I am so excited! I decided learning to play the piano would be a great way to distract myself :)

Have you played since you were a youngster?

And the Cello.. wow!

My pets too help me a great deal they always seem to know how to find a way to make me smile even when I am hurting so bad. One of my dogs actually knows before hand when Iam going into a flare or if my oxygeon is dropping before I do, she starts getting sick so then I know to check my vitals and know somthings wrong. I also love art and try to keep my hands busy, I was a pastry chef so I like making edible flowers and doing paintings, sewing ect. Then I do alot of puzzles whether regular puzzles or word games just to keep my mind going.

Brain Games!! Wonderful
 

Alaska49,

It is amazing how much joy our furry friends can bring us! I have 2 dogs myself and like you, I smile and sometimes even giggle at the silly things they do. So glad yours alert you to pending trouble - that is awesome!!

My husband and I also started doing puzzles together. We have a designated table set up with one we are working on, this makes it easy to stop at any time and put a few pieces in. For me it is a great distraction even if only for a few minutes when pain is skyrocketing!

:yahoo: mmmm pastry chef.. oh my goodness you can come for a visit to Seattle anytime!

Thank you for taking the time to share - I have a few more ideas of things I can try now.

Have a great day!
Tessa

Lol zook, I am so pleased you are going to start learning the piano! That's an amazing choice to make - you won't regret it :)

I've played since I was young, but without any lessons or training so I've not reached any cosmic level. It's my bolthole, my sanctuary, and my saving on many occasions. Music really can soothe your soul. And if you are making it, no matter what the level, it is always powerful and magical.

Initially the exercises will probably seem a little repetitive if you haven't played before, but try to see them as a kind of physio for your pain - I still do scales and arpeggios as finger/hand exercises, and that repetition allows you to lose yourself in them. I find that brilliant pain relief.

Let me know how you get on with your first lesson - it'll be great to hear your reaction to it! I hope you fall in love and lose your heart a little to it...

Do you have your own piano? If not, try to get one ASAP - you can get a second-hand (pre-loved :winky:) one for the cost of transporting the thing. A real wooden piano is an incredible friend to have...

Interestingly, I am about to have my first ever formal cello lesson next weekend! I've had my cello (Edward :D) for years, but only got back into playing him again this year, and I want to have a grade certificate in case my left arm continues its involvement in the CRPS dance....

New things are always good I think. They involve your brain and emotions so much that it pushes your pain away just a bit. Sounds like a deal to me :p

Good luck,

Bram.

lose yourself in music :)
 

Bram,

Thank you!! I took a few lessons when I was around 8 yo. I loved it back then and since have always been drawn to them. So when I was trying to find things I could do to keep my sanity during the winter months and my mind occupied.. I thought of how wonderful it would be to learn to play. My only worry is how long I could tolerate sitting to actually play. My hope is that I will lose myself enough in it that I won't think about the pain :)

Amazing that you taught yourself!!! You must be one smart lady :)

I love that you named your Cello "Edward" that is funny! Oh have fun at your lesson and do let me know how it goes. :Thats-Funneh:

I think it is really important with this disease to find or create new passions so that depression and self worth doesn't get a chance to take hold! I truly appreciate all who take the time to respond. Shoot, it helps us learn a few things about each other.. a bonus!

My other goal this winter is to learn sign language (Vrae inspired). I really think that will be great therapy and who knows someday it could become quite useful.

Have a fantastic day Bram,
Tessa

My dog &. Cat.
 

My little Toto (a Yorky with 2 in. Long legs) follows me like a lamb from room to room. She's 10 yrs old & loves me & I even feel like she feels sorrow for me when I'm I'm feeling bad. My cat loves me too but takes a second seat to the
"Dog." Toto thinks she's human & chases "Emily" away! Lol.
My other savior is Lidoderm patches. You have to ask your Doc. For them. They are the only patches that I could tolerate. They feel a little cool ( eeeuw)
When you first put them on (for 3days) but really help pain or coldness.
I also I use electric pads under my body in bed & electric blanket on top under my spread.

Well, I am not as exciting as you guys are. We do not have any pets, nor can I play any instrument :( What helps me is watching TV, it is my escape from reality. What also helps is coming here :D I love my iPad and will play some games on it when my hands will allow.

Thank you for sharing!! Glad you have your little lamb following you about :) Our furry friends really do impact our lives in positive ways.

And the Lidoderm - yes, that helps me too but I am realizing more and more that the the things that help me the most doctors cannot provide. No medication or treatment can help me when I am feeling worthless or sad that all comes from things in and around my life. Even just 5 min of joy/pleasure a day does wonders for the spirit!

My daily goal is to find something new to bring me joy so that the things I can longer do don't bring tears to my eyes, and the new joys remind me that I am a survivor!

lol Nanc.. I can't play an instrument either but I'm sure gonna try. Heck my husband sings me awake in the morning and even though I love it, it can be rather annoying.. so now I intend to make music for him :) haha maybe we will start a band!

What is your favorite show? You know you can learn an instrument on the iPad ;)

you are too funny Tessa! Let me know when your new album drops :D Seriously though, I think it is great that you are going to take piano lessons. I got the garage band app on my iPad...really got it for my husband. My hands hurt too much to do much with it myself. I used to draw and scrapbook, can't do either anymore :(

I have so many "favorite" shows. True Blood, Revenge, Scandal, Grey's Anatomy, How I Met Your Mother, Big Bang Theory...it goes on...I love a good comedy!

Big Bang Theory!!!!! Grays Anatomy!!!! How I Met Your Mother!!!!! YAY!!!!!

Go Nanc! :D I love those shows. E4 is on a LOT in my house!

You can't beat a bit of escapism......like a good film does that too. I love Lost In Translation with Bill Murray, it's set in Japan, and it really is like a different world. Plus it's about 3 hours long lol :winky:

Bram.

Big Bang Theory is the best!!! So sad that this is the last season for How I Met Your Mother...but at least we will finally meet your mother!!

I have not seen that movie, not sure why. I have seen it on the movie channels lately. I will have to watch it...I like Bill Murray. There are my favorite movies that keep coming on and my husband can't believe that I keep watching them...Return to Me, Fools Rush In, A Walk in the Clouds....

Tessa, YOU ARE SO NOT WORTHLESS. Please don't feel that way. It sounds like you have a wonderful husband and two great furry kids in your life. And you are such a caring and supportive person. And you are a survivor, because you manage to keep going and keep a sense of humor in spite of all you're going through. So I hope you don't ever feel like that again. I know it's hard, I've felt that way myself too at times, but I'm trying to focus on the positive things like you told me you try to do. You are very special and don't ever forgot it lady! Hope you have a great day my friend.:hug:

Thank you RSD Renee - I appreciate the kind words. Personally I think we all suffer from this feeling off and on.. who wouldn't when after living a normal life suddenly we face great difficulties in doing even the simplest tasks. It is okay to have sorrow for what once was, as long as you don't "stay there" so this is where my goals and aspirations come in to play. Trying to create and reach new goals even though they are far different from the kind of goals I had before. Look up, move forward and reach out.. my motto!

I will try not to feel that way again.. but if I do I promise to remember and think about the encouragement you have given me today, YOUR KINDNESS is very much taken to heart. I'm so glad you joined this group - it is obvious you truly care about others!

Big hugs back.. ah ha this is the best kind of HUG... they don't even hurt :) YIPPEE for iHugs.. they rock :)

LOL - "iHugs" :D I call them "virtual hugs" on another board, but I think I like iHugs better :)

I pretty much agree with everything here - music, family, animals, tv, and lidoderm patches when I get really focused pain in a small area. I guess, as I think about it, I would summarize it as "love and beauty" things...

Here's something that I don't think I saw yet - flowers. Since I moved from California to Arizona (a place I've always hated, unfortunately, but it couldn't be helped), I've discovered that I need flowers. They just comfort me with their beauty. Also, an ocean "sleep sound" is really helpful to me at night. And it can't be just ANY ocean sound - I looked and looked for the right one - it had to not have too much of a change in volume, or it would jerk me awake just when I was nodding off with a WHOOSH of the waves coming in. I like the "Naturespace" app, and the "Cumulous Aquae" ocean sound - ONLY that one. The other ocean sounds are just too disruptive. It gently rocks me to sleep, and when I can't sleep, it still soothes me and reminds me of the home I love.

I miss my dog SO much :( We had such a wonderful dog - a big, lovely mutt we picked up wandering around the streets and had for 14 years. He passed away just a few months ago ... we decided it was time for him to be out of his pain, and took him to the vet's, and I laid down on the floor with him and cuddled with him as I had so often on my bad pain days, and he passed away in my arms, next to my heart. My husband is more concerned about not looking weird and didn't want me to lay down on the floor at the vet's, but I didn't care - I wanted his last memories to be comfortable and loving, so I did it. God, I miss him so much ... dogs are so special.

Music is also very important to me. I play the harp, when I can. It's really a lovely instrument; I love how you embrace it and hold it next to your heart as you play and feel the music in your body.

A good movie or tv show is a wonderful distraction, as are books late at night when I can't sleep. And family is such a blessing, although since we moved here, we're having so many family issues, sadly. The kids and I get along great, but we moved very close to a lot of my husband's family, and unfortunately ... well, it's usually not so good to move really close to either family, and it's really hurt our family :( I just found a good counselor, though, and started seeing her last week. My daughter wants to see her, too, so we'll start her up this week.

Anyway, good thread! and interesting that we have similar things that help.

Thank you SloRan!! lol.. I had forgotten how much flowers mean to me also. My sweet husband started bringing home a bunch or two when he goes grocery shopping at Trader Joe's (FYI for anyone who doesn't know this.. TJ's has beautiful bunches for $3.99) and I really have gotten spoiled by this :) They do brighten my spirits!!

Great idea on the Ocean sounds - I hadn't even thought of that! I will give it a try.

Sorry about your dog, I can't imagine how painful that must have been but, I am so glad you were able to comfort him!

The Harp.. wow we have a musical group here! I have always love the beauty of harpist it does look very calming and the sound.. just magical.

Family.. we love how annoying they can be at times! I do hope those dynamics work themselves out.

When you used your Lidoderm patches did you place them on the nerve root above the affected site? At least for me they worked much better when I found the nerve root or the location of the nerve path closest to the surface of the skin for better absorption (always higher up the nerve path so the meds flow down the nerve path). But, as with everything else it doesn't always work for everyone. I also use medicated compound cream in the 12 hours that the patches aren't on and I do think the combo makes them both more effective.

I do hope the counseling is positive for both you and your daughter, let us know how it goes if you don't mind sharing.

Have a terrific evening and thanks for joining in on the conversation :)

One of my magical escapes from CRPS pain
 

Nature :) The most awesome way to escape pain for a little while!

This is me and my very sweet, sweet husband enjoying the Pacific Northwest and each other. :)

I use heat packs frequently. They do help with the pain a bit. My husband is terrific at spotting when I need one. He often gets one for me before I've even thought of it myself. Warm baths and light massage also help me.

I find it also helps me to focus on physiotherapy. It doesn't decrease the pain but I can see slow improvement in function and that keeps me feeling positive. It is still early days for me.

Reading helps, of course, but I now find it difficult to manage the kindle on the bus and train; they are always crowded and I don't always get a seat. So, I like to listen to podcasts when commuting. I take the bus and train to/from work which, as I'm sure you all can imagine, is a bit challenging. All the movement is unpleasant and, since I am in London, I am constantly trying not to get bumped while I'm traveling. The podcasts really help to take my mind off the pain.

My dog is a great comfort to me. She is so sweet and funny and beyond adorable. She loves to curl up next to me and take a nap. There is just no therapy like her furry, warm little body next to me, snoring softly. She is also really careful when I use my CRPSy hand to stroke her. That is favourite physiotherapy. :)

That's exactly how I feel about my cello SloRian - and why it had to have a name and be a 'he' :winky: I love the initial almost hug as I position Edward in my arms....awww bless him, he is lovely :hug:

Reading....yes, I have literally just started reading a series of books that always bring my pain down quite a lot when I read them. Two series of five books - ten in total, so I'll be zoning out for at least a couple of weeks!! They are the David Eddings books, first series 'The Belgariad' and second 'The Mallorean' - the first book is called 'Pawn of Phrophecy' and that's the one I've started. It's a fantasy series, but so well written and rich with fantastic characters, I can be lost in these books and love every minute. I also love Rosamunde Pilcher's novels, they are a little old-fashioned but like a cosy blanket, and just make me feel good.

Literature and music - where would we be without the arts?! :)

Bram.

Yes, TJ's is da BEST place to get flowers!!! So inexpensive, I can't believe it! When it's daffodil season - WOW! So cheap, and so cheerful. Ditto with sunflower season. And I'm stuck in Arizona and can't grow flowers myself, like I could in California, where I had a whole WALL of pink and red roses ...

I highly recommend that particular track. But try several, because you might respond differently. There are some that just send me up the wall, but this one really soothes me.

I'm a little different than most people here. I've been in remission for 6 years now. I definitely had RSD; it was confirmed by several doctors and I had all the signs. It started with torn tendons in my left foot, then I got surgery, then it was healing, then one day, that awful "why is it hurting so much all of a sudden?" My foot was horribly discolored, cold, shiny skin, less hair growth on the leg, all the signs. Plus the horrible, horrible pain - trying to take a shower while not letting a single drop hit your foot, or not wearing jeans because the hem would brush against your foot and feel like a chainsaw.

One time I was putting on my makeup at the bathroom sink and for some reason there was a penny on the counter, and it fell off onto my foot ... I collapsed on the floor in agony, curled up in the fetal position for a good 5 to 10 minutes. I know RSD - but mine never spread, and it went into spontaneous remission when I tore my shoulder ligaments and had shoulder surgery. The foot just went back to normal. I was going to get a spinal block for the RSD, but then the doctor retired, and before I found another, I tore my shoulder, and then the foot just snapped back to normal.

However, I deal with the RSD monster with my daughter, who got a stress fracture in her foot, which started healing normally, and then one day ... :( And she went through 4 spinal blocks, and 6 Bier blocks, and was scheduled for a SCS implant surgery when we heard about Calmare and gave it a try and it worked with her and she went into remission.

I also deal with another monster with me - CFS (chronic fatigue syndrome) and Fibro. CFS is horrible, too, but the pain isn't anywhere close to RSD. But the fatigue is much, much worse, and like RSD, it's an invisible disease. And people may not understand RSD, but they LAUGH at CFS. "I'm tired after a long day, too!" they say, laughing. They don't understand - on the BEST days, I have trouble even walking around the block - it's like a Himalayan expedition. On the bad days, I stumble around and walk into walls; that is, when I can even make it out of bed. I've had this monster for 30 years now. And I used to be so strong and athletic :( Now when we go camping, instead of going on hikes, I send them all away with a cheery wave - "Have fun! Say hi to the waterfalls for me!" and I go back in the trailer and sleep so I can be at least somewhat coherent by the time they get back.

And when you're with a group of new people and they want to walk somewhere - "I'm sorry, but I have a health problem and I can't walk far; you guys go ahead, and I'll just sit here and wait for you to come back." The stares, the looks over their shoulders as they walk away. Or the field trips - everywhere you go, you look desperately for the chairs, for the ledges to lean on. And then once we were in a room with nothing - NOTHING - and I finally had to just sit on the floor in the middle of a tour group with all the parents and the kids stealing glances at me, as I tried to smile and whisper to those around me "I'm sorry, but I have a health problem and it's either sit down or faint!" That, of course, on the few field trips that I was even able to go on; most of them I had to turn down right away because they were too long.

I have a good deal of pain - I'm typically at a 4 or 5. It's nothing like RSD, though, and my heart goes out to you all. But I know RSD, and I deal with it with my daughter, and I just feel that this board is where I fit best, because I want to stay up with the trends and I have a lot in common with you all, and a lot of the same issues. So for me, as far as Lidoderm, I just put the Lidoderm patch on when I happen to have a very localized pain spot, which doesn't happen very often. But when it does, the patch is a godsend.

Aww, that is SO cute!! :) I just love the cello; it has such a beautiful, rich sound.

I love how my harp just nestles on my shoulder ... I'll have to see if I can think of a good name.

I'm an avid reader - I just love it! I love the classics, and I'm a big Tolkien fan (my avatar uses his Elvish characters) and I'm branching out to literature from other countries (the Russian classics are great) but my go-to for when the pain is worse is Agatha Christie - she's just so fun, and so wickedly and hilariously accurate with how people act :D Just fun, light, distracting reading. I can't manage anything else when I'm feeling worse than normal.

Anyone a Dr. Who fan? I'm looking forward to the new Doctor; I just didn't really click with Matt Smith (although how can anyone follow David Tennant?), although I like Clara. Wasn't wild about Amy.