Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
thaliajen
It snowed today. Gorgeous. I love snow. Always have. But the RSD hates snow. Sometimes I think of the pain as a person named RSD. He's cunning, insidious, ruthless. Maybe the pain is finally driving me crazy.
In 25 minutes exactly, I can take a breakthrough medication. I've been counting the minutes, wondering if I wrote it down wrong, b/c I haven't felt this kind if pain in a long time. But I'm right about the time and it won't be 4 hours. My foot is trembling, sweaty and ugly. My ankle is discolored. But the pain is the worst.
I think about what a rough day it was. I had so much to do but I couldn't do it. Why? I've always lumbered through before. No matter the pain. But today was Xmas Decoration Day and I couldn't do it. It hurt too much. I was too tired. Is this disease changing? is it getting worse after all these years?
14 minutes. I can take a breakthrough, which will calm the burning in 14 minutes. In 15 years I haven't ever taken one early. I'm a smart woman but it's the deal I made. If I take this medicine, I take it as prescribed. Surely though, a doctor wouldn't mind if I took it 14 minutes early? But then again, why chance it. I might feel sick again, like I did the 1st weeks I was on it.
I'm SO tired. I have my doctor appt tomorrow. My 2 year old is getting a cold. My house is undecorated. No presents wrapped, no cards sent out. I have stuff to order online. But today was difficult. I made myself get up, take a bath, I watched my son but didn't read to him today. Well, 1 book. Not enough.
I worry about him. At 2 years old he is perfect. He is so sweet, so trusting, and he expects Mommy to be there. What if I wasn't? What if MY RSD is like so many others' I've read about? What if it spreads? I already have a bad knee. I don't want to hear it is RSD so I haven't had it looked at yet.
The pain is making me sick to my stomach. 10 minutes. Could that hurt? Probably not, but what is 10 minutes in the scheme of things? A doctor may not understand. Not even when my fire and ice foot is joined by a pounding headache. I've had that for a half hour. And the pain in my shoulders. Wow- that back/shoulder pain is not on fire pain but it is a distraction!
I had a massage last week and heard from yet another massage therapist that I need to have my upper back looked at. All the years of hunching over to type, the pull of a heavy chest, and carrying my laptop from city to city over my shoulder has made my muscles cramp. She says I need to do exercises, that something has shortened and something is too long. I forget what muscles- I was just so relaxed. She worked hard to release a knot, only to find 2 more. I wonder- is that just a phrase? I mean, do muscles tie in knots? Really? 5 minutes.
I get a bottle of water and get my pill out. Middle of the night and I'm acting like it's noon. I hate this disease.
In 4 minutes I can swallow the innocuous white pill. I wish I could take the regular long-term with it, but that waits until 3am at the earliest.
The snow is so pretty. I have the window cracked and the fresh air feels good. It's so pretty out there. My leg muscles contract. Damn it! Those muscles are mixed with the icy fire of the foot. But it's 2 kinds of pain. The icy fire and the cramps. Why couldn't this stay in my foot? Why does it even bother my legs? One doctor said it's because I limp.
I don't limp much. Only when it's cold. Well, I don't notice it. But my niece did. At Halloween. Why are you limping? She asked. What do I say? Explain RSD to an 8 year old? I laughed it off. Said I had a cramp. She didn't believe me, I could tell. She gave me a hug and took my son's stroller for me to the next house. So sweet.
Now I have to break the cane out. I HATE that cane. It makes me look weak. I know, I AM weak in the body, maybe a bit. But I am not weak-willed! I am NOT weak.
It's time. One swallow. Now I wait. And pray. And wonder if that little pill can handle all the pain. Foot, shoulders, back, head. What is wrong with my back? I look like a hunched old lady at 43.
Pill, do your work. Make the fire go out. Warm the ice at the same time. Wait! I can take a muscle relaxant! Maybe I WILL sleep a few hours. If the MR can relax the shoulders AND the legs...
Those leg muscles are strong. Hard to believe I was once a runner. I remember rubbing down my calves after meets. I remember the growing pains that used to wake me at night. Back then Motrin was a prescription drug. It would help my leg spasms but is it worth the probable stomach issues? Maybe the muscle relaxant will be enough.
I type to keep my mind off things but all I can think of is the RSD. Is it advancing? WHY is it this bad? Or, maybe I'm just forgetting that winter RSD is worse? Maybe this is just what it feels like. It's been so long since I was around real cold weather. And my medication dose was changed. I take a higher dose long-acting, lower dose breakthrough. Same medication, though.
I remember the doctor who wanted to put a pump in my body, a morphine pump. Even without my medical and needle phobias, that was never happening. I'd be terrified. And that was 10 years ago, plus some.
I wonder who I'll see tomorrow. The doctor I originally saw, or his new partner, or his PA. I like them all. But the original doctor worries about me driving an hour there. Actually, as I'm closer than he understands, it is about 45 minutes if traffic is okay. That's nothing compared with some CP patients! But it's a thing he continues to bring up and it bothers me. Maybe b/c it took forever to find him as a doctor. And my doctor died.
If I did see him, I could at least ask if taking one more breakthrough a day on days like this would be okay. It's still less than I took before seeing him. I have to give him props though, because the way he framed it, I ended up taking less medication and getting the same result. Except for today. So maybe in the winter I take 30mg a day more? He had said HE didn't mind but the government didn't want people taking more breakthrough pills than long-acting. Why the govt thinks it knows my body is beyond me, but my doc follows all guidelines. I shouldn't complain.
He was willing, back when he 1st saw me, to try a stronger med. But I'd rather wait it out. See if I can make it. Winter might be long but I'm strong. I recall his face when I said I didn't think a stronger med was necessary. Surprise. But back then it was warm. I was being honest. If he asked today, I'd be honest. But I would also say I would rather wait and see how the winter goes. After almost 15 years, I don't want to switch meds.
The pill is working. My foot is more of a small flame than a fire. The muscles in my legs are not pinching and contracting. Even my shoulders feel a bit better. I'd say I'm at about a 4. That's higher than I get in the summer, but it's SO much better than the 8-9 I was at just half an hour ago. Now I need to try to sleep so I can be at my best for the drive, which I actually love. I get to listen to MY music, MY Sirius XM radio, no worrying about my son or my husband. I can sing to the music and act crazy. I'll probably have to use that damn cane, especially in the snow.
Time to exhale. Time to give my body the rest it needs and my brain the rest it deserves.
Thank-you, God. Thanks to all. I made it again. Thanks for taking the journey with me. I have a feeling many of you have been on the same road, with the same results. Let's pray we always make it.
In 25 minutes exactly, I can take a breakthrough medication. I've been counting the minutes, wondering if I wrote it down wrong, b/c I haven't felt this kind if pain in a long time. But I'm right about the time and it won't be 4 hours. My foot is trembling, sweaty and ugly. My ankle is discolored. But the pain is the worst.
I think about what a rough day it was. I had so much to do but I couldn't do it. Why? I've always lumbered through before. No matter the pain. But today was Xmas Decoration Day and I couldn't do it. It hurt too much. I was too tired. Is this disease changing? is it getting worse after all these years?
14 minutes. I can take a breakthrough, which will calm the burning in 14 minutes. In 15 years I haven't ever taken one early. I'm a smart woman but it's the deal I made. If I take this medicine, I take it as prescribed. Surely though, a doctor wouldn't mind if I took it 14 minutes early? But then again, why chance it. I might feel sick again, like I did the 1st weeks I was on it.
I'm SO tired. I have my doctor appt tomorrow. My 2 year old is getting a cold. My house is undecorated. No presents wrapped, no cards sent out. I have stuff to order online. But today was difficult. I made myself get up, take a bath, I watched my son but didn't read to him today. Well, 1 book. Not enough.
I worry about him. At 2 years old he is perfect. He is so sweet, so trusting, and he expects Mommy to be there. What if I wasn't? What if MY RSD is like so many others' I've read about? What if it spreads? I already have a bad knee. I don't want to hear it is RSD so I haven't had it looked at yet.
The pain is making me sick to my stomach. 10 minutes. Could that hurt? Probably not, but what is 10 minutes in the scheme of things? A doctor may not understand. Not even when my fire and ice foot is joined by a pounding headache. I've had that for a half hour. And the pain in my shoulders. Wow- that back/shoulder pain is not on fire pain but it is a distraction!
I had a massage last week and heard from yet another massage therapist that I need to have my upper back looked at. All the years of hunching over to type, the pull of a heavy chest, and carrying my laptop from city to city over my shoulder has made my muscles cramp. She says I need to do exercises, that something has shortened and something is too long. I forget what muscles- I was just so relaxed. She worked hard to release a knot, only to find 2 more. I wonder- is that just a phrase? I mean, do muscles tie in knots? Really? 5 minutes.
I get a bottle of water and get my pill out. Middle of the night and I'm acting like it's noon. I hate this disease.
In 4 minutes I can swallow the innocuous white pill. I wish I could take the regular long-term with it, but that waits until 3am at the earliest.
The snow is so pretty. I have the window cracked and the fresh air feels good. It's so pretty out there. My leg muscles contract. Damn it! Those muscles are mixed with the icy fire of the foot. But it's 2 kinds of pain. The icy fire and the cramps. Why couldn't this stay in my foot? Why does it even bother my legs? One doctor said it's because I limp.
I don't limp much. Only when it's cold. Well, I don't notice it. But my niece did. At Halloween. Why are you limping? She asked. What do I say? Explain RSD to an 8 year old? I laughed it off. Said I had a cramp. She didn't believe me, I could tell. She gave me a hug and took my son's stroller for me to the next house. So sweet.
Now I have to break the cane out. I HATE that cane. It makes me look weak. I know, I AM weak in the body, maybe a bit. But I am not weak-willed! I am NOT weak.
It's time. One swallow. Now I wait. And pray. And wonder if that little pill can handle all the pain. Foot, shoulders, back, head. What is wrong with my back? I look like a hunched old lady at 43.
Pill, do your work. Make the fire go out. Warm the ice at the same time. Wait! I can take a muscle relaxant! Maybe I WILL sleep a few hours. If the MR can relax the shoulders AND the legs...
Those leg muscles are strong. Hard to believe I was once a runner. I remember rubbing down my calves after meets. I remember the growing pains that used to wake me at night. Back then Motrin was a prescription drug. It would help my leg spasms but is it worth the probable stomach issues? Maybe the muscle relaxant will be enough.
I type to keep my mind off things but all I can think of is the RSD. Is it advancing? WHY is it this bad? Or, maybe I'm just forgetting that winter RSD is worse? Maybe this is just what it feels like. It's been so long since I was around real cold weather. And my medication dose was changed. I take a higher dose long-acting, lower dose breakthrough. Same medication, though.
I remember the doctor who wanted to put a pump in my body, a morphine pump. Even without my medical and needle phobias, that was never happening. I'd be terrified. And that was 10 years ago, plus some.
I wonder who I'll see tomorrow. The doctor I originally saw, or his new partner, or his PA. I like them all. But the original doctor worries about me driving an hour there. Actually, as I'm closer than he understands, it is about 45 minutes if traffic is okay. That's nothing compared with some CP patients! But it's a thing he continues to bring up and it bothers me. Maybe b/c it took forever to find him as a doctor. And my doctor died.
If I did see him, I could at least ask if taking one more breakthrough a day on days like this would be okay. It's still less than I took before seeing him. I have to give him props though, because the way he framed it, I ended up taking less medication and getting the same result. Except for today. So maybe in the winter I take 30mg a day more? He had said HE didn't mind but the government didn't want people taking more breakthrough pills than long-acting. Why the govt thinks it knows my body is beyond me, but my doc follows all guidelines. I shouldn't complain.
He was willing, back when he 1st saw me, to try a stronger med. But I'd rather wait it out. See if I can make it. Winter might be long but I'm strong. I recall his face when I said I didn't think a stronger med was necessary. Surprise. But back then it was warm. I was being honest. If he asked today, I'd be honest. But I would also say I would rather wait and see how the winter goes. After almost 15 years, I don't want to switch meds.
The pill is working. My foot is more of a small flame than a fire. The muscles in my legs are not pinching and contracting. Even my shoulders feel a bit better. I'd say I'm at about a 4. That's higher than I get in the summer, but it's SO much better than the 8-9 I was at just half an hour ago. Now I need to try to sleep so I can be at my best for the drive, which I actually love. I get to listen to MY music, MY Sirius XM radio, no worrying about my son or my husband. I can sing to the music and act crazy. I'll probably have to use that damn cane, especially in the snow.
Time to exhale. Time to give my body the rest it needs and my brain the rest it deserves.
Thank-you, God. Thanks to all. I made it again. Thanks for taking the journey with me. I have a feeling many of you have been on the same road, with the same results. Let's pray we always make it.
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I hope your pain remains low!
I saw the PA and wasn't able to see my doc to talk about my problems. She was wonderful, but she isn't able to change meds, etc. And I'm not sure I want to do that, anyway. I just have to adapt as much as I can. I didn't even bring it up b/c the office was full, the docs were busy, and it IS only December. I'm going to try to give it another month. Maybe it was just a one night thing...Okay, so I know that is wishful thinking.
I am happy with all the replies- I am wishing us all a pain-free night!
Healing hugs,
Marci
I am much like you, count down the minutes, hold off on changes til I can't take it anymore.
This month gives you time to think about asking for any changes.
The weather can make a huge difference for many.
Yes the snow is lovely is it not? I'll take it over the cold rain any day.
Hang in there my friend & if you decide you need any changes be sure you'll be able to see the actual doctor. I like my PMs PA also, sometimes I get more sharing & answers from her then my PM.
Usually the office will call & tell me the doctor will be unavailable & is it OK to see the PA
I appreciate that, better then not knowing or having a question you know wont get answered.
Lots of RSD flairs here. My heart goes out to you all.
By the way do you really act crazy listening to the radio on the way to your PMs? I may have passed you not long ago, LOL.
just kidding let loose & have fun.
Funny when we are free of certain responsibility for a time how we manage to take a wee bit advantage.
On the days I have free time, actual nothing really to do free time I waste it getting so excited I wear myself out just with the excitement of having nothing to do. Now I'm not kidding there.
God bless & hoping you get through the month with less pain.
Sammy
If you can try to stay on top of the pain it really is easier to handle.
Many prayers coming your way!...
Deb
God bless and wishing less pain for you.
Anne
As for the pump- I refused it years ago and wouldn't ever get it. I'm way too nervous for something like that. I was just saying I'd been offered it and turned it down. Nothing at all against the people who have them, but I'm too phobic for a pump.
I guess I'm nervous about talking to my doc b/c I never have, in 15 years, asked for more meds! And this new doc took me on saying he could only give me what the govt guidelines are, which mean the same amount of breakthrough as long-acting meds, no more. He said himself he wished that the IR came in a 60mg but he won't go against the "guidelines" and I don't blame him.
I always have the option of asking for a stronger medication, but I've been through this before and will go through it again (the strong pain night) and it's gonna have to be REALLY putting me out of my mind to make me ask for a stronger med. I don't want to be around my son and be out of it as I was when I spent a week getting used to the MSIR/MSContin. That was almost 15 years ago so I have no idea how to adjust to meds again. But I will ask if it gets out of control, if I can't work or take care of my son.
I'm doing better, and slept most of the night last night. And we're supposed to get warmer weather next week, so I look forward to that. Meanwhile I just am being careful. And you can bet I'm not forgetting a dose or taking them too late. I'm staying on schedule.
I feel blessed by all the wonderful people here! How kind you are and it's so ice to know there are people who care. Know that I return the sentiment and the prayers!
Thanks!
Jen
Hugs........ love............ and God bless you
Blessings,
Mary - England
Jen