Chronic Pain Management Support Group

[Lynn49]

I'm so sorry for the pain you all endure...the only thing that comes close to that in our lives is our son who had back surgery that put him in a wheelchair for years, then over the years morphine, fentanel (sp?) patches, tests, chiropracters, MRIs, the complete run-around! He just went thru morphine withdrawl and with the help of his chiropractor can basically get through life, do things, then have to rest for a few days to get over trying to do things!
Personally I hate to complain because my discomfort can't compare to what you people must endure. I have 3 degenerated discs that mean my hubby many times has to help me up from the sofa or chair...and something now wrong with my knee that leads to searing pain and wakes me up at night to take another Tylenol with codeine, which is my life-saver for now. I had x-rays done and get my results at the end of the month. I hope an injection can take care of that at least to get me through the summer.

On top of that my best friend, my 'sister' of 15 years has just been 'diagnosed' with ALS. It started around Christmas with a little mouth swelling inside, to where her speech is slurred now, and even her legs are getting weaker. It's almost impossible for us to believe this is actually happening to her! It's horrid, unfair and the worst diagnosis anyone could have! One's mind is kept alert so that a person knows exactly how one is deteriorating and how much pressure this puts on his or her family. Why would something like this happen to one of the most generous, caring people I've ever been fortunate enough to call 'friend', let alone my best friend! Never took a sip of alcohol, eats healthy, maintains her petite weight...sorry to vent...I know you all have your own problems...I guess I'm just having difficulty adjusting to her having to go through this and I just pray I'm up to the task of being by her side every step of the way.

I continue to pray for everyone on SC....perhaps you can spare a prayer for my dear Friend....thank you....

[Skippy]

I'm so sorry for the pain you all endure...the only thing that comes close to that in our lives is our son who had back surgery that put him in a wheelchair for years, then over the years morphine, fentanel (sp?) patches, tests, chiropracters, MRIs, the complete run-around! He just went thru morphine withdrawl and with the help of his chiropractor can basically get through life, do things, then have to rest for a few days to get over trying to do things!
Personally I hate to complain because my discomfort can't compare to what you people must endure. I have 3 degenerated discs that mean my hubby many times has to help me up from the sofa or chair...and something now wrong with my knee that leads to searing pain and wakes me up at night to take another Tylenol with codeine, which is my life-saver for now. I had x-rays done and get my results at the end of the month. I hope an injection can take care of that at least to get me through the summer.

On top of that my best friend, my 'sister' of 15 years has just been 'diagnosed' with ALS. It started around Christmas with a little mouth swelling inside, to where her speech is slurred now, and even her legs are getting weaker. It's almost impossible for us to believe this is actually happening to her! It's horrid, unfair and the worst diagnosis anyone could have! One's mind is kept alert so that a person knows exactly how one is deteriorating and how much pressure this puts on his or her family. Why would something like this happen to one of the most generous, caring people I've ever been fortunate enough to call 'friend', let alone my best friend! Never took a sip of alcohol, eats healthy, maintains her petite weight...sorry to vent...I know you all have your own problems...I guess I'm just having difficulty adjusting to her having to go through this and I just pray I'm up to the task of being by her side every step of the way.

I continue to pray for everyone on SC....perhaps you can spare a prayer for my dear Friend....thank you....

Why? is a good question, unfortunately I do not have a satisfactory answer. She is quite fortunate to have you as a friend, and I believe
you will be blessed as you are a blessing to her.
Prayer offered.

[Lynn49]

Why? is a good question, unfortunately I do not have a satisfactory answer. She is quite fortunate to have you as a friend, and I believe
you will be blessed as you are a blessing to her.
Prayer offered.

Thank you so much, Skippy...sorry I couldn't rep you yet...but I will when I can....Gentle hugs..Lynn

[Valiant]

Dear friends,
My relapse isn't over yet, still taking its toll and crippling me further. Using my hands is now an ordeal, opening a can, buttoning a button, typing, etc. Edema still very troublesome, but have been eating a cup of white rice every day along with meals, and have lost 7 lbs in 2 weeks. Some days, can actually see my normal fingertips again, and ankle & wrist bone tips, but mostly they are very swollen. Pain very bad at night, but taking acetamenophen, and getting some sleep sometimes. What a blessing!

Realized that life goes on anyway with pain...I hope.
So I brought out a project I've been meaning to do for a long time...rag rugs on my homemade loom. No waste of all those old clothes in the closet; I cut many of them in strips last summer, sewed the strips into long overlapped strips, then will weave them on the loom into rugs. Started the 1st one on Friday; it was a mess. Went to bed discouraged, but next day tried again; figured out how to improve the technic, looks far better. So I have enough strips for about 3 cottage rugs for my kids, and lots more when I finish with cutting up the fabrics from old clothes, etc.

Could only work for a little while, then rest, but it took my mind off the pain, and I got something done, and have a sense of satisfaction and hope that I can still get things done.

Got a little gardening done, but I pay for it in severe pain during and after. However, I did plant 6 pole beans & 16 morning glories plants yesterday, and have a few more bedding plants to set out yet. Just a bit at a time, and something is getting done. Hoed up the borders, and then later on kept going to the window to look at them, really enjoyed the results. Robins keeping me company. Little black flies and skeeters trying to get me too, but I wear a hat draped with commando bug netting and only 3 got inside.

Sure tired today, so rested, cooked, rested, baked, rested, cooked, rested, washed dishes, rested, etc.

The pain's not going away, so gotta live with it and adjust, and find ways to make the most of life anyway.
Take care, everyone. Prayers appreciated very much!

[Abby5]

Sometimes I wish everyone could see my illness!! Maybe then they would get it

[Skippy]

Sometimes I wish everyone could see my illness!! Maybe then they would get it

Unfortunately it isn't like a broken arm or leg, it can't be seen. It has to be
experienced
I hope you find some relief.

[WandaJean]

Sometimes I wish everyone could see my illness!! Maybe then they would get it

My illness are invisible, except when I walk for more than 10-20 mins than I waddle like a penguin, I feel for you, I know what it is like, I am in
invisble pain" everyday, the more I do the more pain I am in
I am very sorry for all of you that suffer, my thoughts/prayers go out to all.

[Skippy]

Sheer agony still! However, just got back from Doctor with increased pain
medication.

[Valiant]

Hi Pain-Pals,
Haven't been able to sleep much lately with this relapse and edema, but am seeing some slight improvement with the swelling going down a bit in my hands and feet. The relapse also changed my brain sleep center, and couldn't sleep for about 3 weeks. Some improvement lately, some sleep at night sometimes.
Lately, one thing that worked to put me to sleep was falling asleep under the warmth of 2 comforters. Slept like a baby for about 6 hours. So wonderful to be without the awareness of pain for that long.
Take care, and try to get your mind off it if possible--reading, music, etc.
I also find that when the pain in my hands is too intense, I rest on my back with my hands next to both sides of my head, fingers up. After 10 minutes the swelling is less, and the pain is less too.
Sure wish the pain meds really worked, but how have a med closet full of samples, etc. that don't work for my pain. Acetamenophen still works for me if I don't use it too often; it's the only thing that ever did help, when all the others were useless or even made it worse.

[Abby5]

Just stopped in to see how everyone is??? I feel like i have a sand storm in my eyes!

[Valiant]

So much to do these days, it's now or never...so I'm ignoring pain as much as possible, unless I need to rest or take meds, and just doing things I want to get done. Worked in the yard this morning, clearing up the branches from the windstorm last week. Got er done.
Then relaxed with a couple o' cuppas; gazing at the flowers here and there in the yard, a sparrow drinking from my pebble-pond...quite spunky, didn't even fly away when I stood up and went near. I have mostly everything in my garden where I want it to be now. So it's mostly maintenance, and next year should be easier on me.
There'll always be pain on this earth, so I'm trying to focus on the other beautiful things in life.

Every morning, the first half-hour is the worst, so I try to stretch all my joints and muscles before getting out of bed. This cuts the pain in half. Then I do the other stretches when I sit up or stand. That helps too. Then I hobble around slowly till the rest of me is warmed up, that helps a little. Then I get down to business, and distraction helps quite a lot. The pain is always there and sometimes very bad, but at least I'm getting things done...and if I don't do things, I'd still have pain, and get less done.

Wishing for happy moments in each day for everyone!

[Kyeste]

Big - gentle - hugs for everyone suffering right now.

I don't know about anyone else but I am having a really hard time with the heat right now. It's making every spot that hurts a billion times worse. I know most peoples problems are worsened by cold weather, but mine is aggravated by heat.

Trying to be positive about it, though! I'm having problems walking but least I have a super strong brother to carry me to the bathroom when I need to go.

And just one more month until summer is over. Come on winter, my body literally aches for you!

[WandaJean]

here is a lesson: when you are in pain because you have to have surgery...do not lift matress and boxspring so you can vacumn underneath bed, I was sore before..now I am F'ing sore
Im suppose to go grocery shopping today, I can barely walk now,but we need food in the house and I can't expect my mom to do it..she is 74 and lately has not been feeling good..she does so much around the house because I can't do more than 10 mins of anything, I feel so useless
I hate this pain...I just want it to go away..all of it.
thanks for letting me vent.
p.s I swear if I didn't have my appendix already taken out , I was having an attack

[Skippy]

Well I had to go to the clinic today, and on the way there some guy tells me that he use to walk like me. He agreed that you have to be the one in pain in order to understand how bad it is.(and why you are the way you are). I used my usual line, that at least you can get out of bed. He agreed
that unfortunately it is true that there are others who are worse off.
His pain was so bad, he wanted to blow his brains out. He then tells me he
takes morphine!
So why do I write this? Well I guess its good to know there are others who truly can relate to it. Also there are others in the same situation but
they have to take stronger meds.for their pain. So I/you could still be
worse off.

[Valiant]

Yes, Skippy ... I hear you. Severe chronic pain is terribly hard to deal with, and if a person ever listens to those little voices that attack, then there is the temptation to give up.

The first two years of my type of polio, I had inner resolve to fight it, and thought the pain would eventually diminish, but it's almost 4 years with neurological pain now, and the demyelinating process of GBS-CIDP is eating up my muscle fibers faster than I can regrow it. Since this spring it has re-attacked my arms and shoulders, and swelled my hands and feet. No watches, medical alert bracelets, former socks and shoes for me now. Raising a window is agonizing pain; both shoulders and wrists feel as if I've sprained them severely. Can't lift a coffee-pot with one hand now, my biceps muscle fails and my hand drops the pot. Using both hands to lift almost everything now. So much pain upon arising; first half hour is really awful, but I know that once I make it through that, it gets a little easier as I limber up where possible. It makes it necessary to think-smart/work- smart, so I continue to simplify and downsize in my home and outdoors. The trouble is that the work to simplify and downsize is in itself a gruelling ordeal of pain and hard effort. Oh well...once it's done, it's done; and after that things are a bit easier.

My whole schedule is thrown off by pain, so I need lots of time to do things, I'm so slow and crippled now. A shower and getting dressed takes 1 1/2 hours, whereas before this happened to me, I was ready in 20 minutes. And often I'm totally exhausted and have to have bedrest for half an hour before I can do anything else. The whole day goes like that, and if I want to get anything done, I have to force myself through pain and awkwardness. It helps to listen to good music while I do things, and to focus on the uplifting things as much as possible.

Lately, the news has been terrible and depressing, and it gets me down...all the evil and trouble going on in the world. God keeps reminding me to focus on doing what I can to make my own life count. So with a change of focus, I can find the encouragement I need to face my own challenges. It's a choice we all make throughout every day of our lives.
I keep telling God that even though I feel like I'm going to die with all this pain and damage to my body, I don't want to die yet, and I ask Him to keep sustaining my life for all I still have to do on this earth, and for the sake of my loved ones. And I'm longing for retirement, and making plans. That's right...if I live another few years, I'll have my old age pension coming in every month, and then you won't see me for dust as I rent the handi-van to go places...shopping, music outings, lily festival, sight-seeing. Wheeeeeeeee...I'm amost there........almost there!!!