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...
I was just reading another post and I mentioned that when I (rarely) talk about my disease or complain (even more rarely) to the very few people who even KNOW about it, I JUST want to hear "I hear you. What can I do to help you?" Is THAT so much to ask?
I'm curious. If you could hear anything from your friends, family, even your doctor when you TRY to explain how bad the pain is and how it keeps you from doing certain things, what would it be? It can be serious, cute, or even relieve stress by using humor. Be as real or as fantastical as you can!
Example:
My cousin who is like my younger sister. She calls when she is having husband troubles, work troubles, kid troubles...but when I have a problem, she TEXTS me for a few minutes. When I talk about RSD she ignores it. She just says I have a bad foot. So to her if I'm saying my RSD is bad, cold weather is really putting me through the wringer, etc., I'd like to hear "Are you sleeping? Do you have help with the baby? Is there anything I can do? You stayed 3 WEEKS to help ME when my 4 year old was born, so can I come help YOU in any way. BTW I am SO sorry about canceling our annual Christmas Eve celebration, lying, and I'm reimbursing you for the $ the hotel cost! Let me take care of YOU for a change!"
My doctor:
I tell him that the RSD is worse and I'm running through the 3 breakthrough meds a day (used to take double that daily) b/c of the cold weather and my work schedule. I'd like to hear "Well, instead of talking about changing you to a stronger med, why don't we experiment with an extra MSIR a day, or add more MScontin. Just b/c you didn't need increases in 15 years doesn't mean you never do."
My Husband. In any situation. "I'm so sorry Honey, I'm wrong, you're right. Is there anything I can do to make you feel better? Oh, and BTW, I've been wrong in every argument for the past 13 years. You're a Goddess, and NOT the Charlie Sheen kind. I love you SO much. Let me rub your shoulders and NOT expect any sex in return." ;)
What are your fantasy replies?
I'm curious. If you could hear anything from your friends, family, even your doctor when you TRY to explain how bad the pain is and how it keeps you from doing certain things, what would it be? It can be serious, cute, or even relieve stress by using humor. Be as real or as fantastical as you can!
Example:
My cousin who is like my younger sister. She calls when she is having husband troubles, work troubles, kid troubles...but when I have a problem, she TEXTS me for a few minutes. When I talk about RSD she ignores it. She just says I have a bad foot. So to her if I'm saying my RSD is bad, cold weather is really putting me through the wringer, etc., I'd like to hear "Are you sleeping? Do you have help with the baby? Is there anything I can do? You stayed 3 WEEKS to help ME when my 4 year old was born, so can I come help YOU in any way. BTW I am SO sorry about canceling our annual Christmas Eve celebration, lying, and I'm reimbursing you for the $ the hotel cost! Let me take care of YOU for a change!"
My doctor:
I tell him that the RSD is worse and I'm running through the 3 breakthrough meds a day (used to take double that daily) b/c of the cold weather and my work schedule. I'd like to hear "Well, instead of talking about changing you to a stronger med, why don't we experiment with an extra MSIR a day, or add more MScontin. Just b/c you didn't need increases in 15 years doesn't mean you never do."
My Husband. In any situation. "I'm so sorry Honey, I'm wrong, you're right. Is there anything I can do to make you feel better? Oh, and BTW, I've been wrong in every argument for the past 13 years. You're a Goddess, and NOT the Charlie Sheen kind. I love you SO much. Let me rub your shoulders and NOT expect any sex in return." ;)
What are your fantasy replies?
"You start out on about 20 percent because of your pain (as opposed to the full 100 percent)
Just getting up and doing a few things is like a whole day's worth to you.
People just don't understand that you have to push yourself to do anything you do."
My husband understands so very well.
I only have a few friends and I know they don't get it but I keep letting them know that I hurt and that I don't get to stop hurting like most people do that just get the occasional headache or something like that.
I say it is like the flu all the time......
and I wish they would say.....
That must be awful, how do you do anything?
Yeah, that's pretty good.
Airline Employees:
"Yes, we understand & apologize that our plane took off late AND arrived late- we have NO excuses that you missed your connecting flight. We know that you plan your trips around your meds, & we're sorry that it took SO long to get your luggage from flight #1 through customs and immigration because WE overbooked the flight & the wheelchair didn't show up at the gate.
We also are taking down the full body scanners at every airport and won't make you walk through w/o your cane. We know how difficult Security is for people with physical challenges. We won't choose you EVERY month for "random" searches and send your cane through security every time.
You will NOT lose your 1st Class seat on the connection even though we're putting you on a new plane, & we know that you spend a fortune on our airline. Isn't it ridiculous? We also know that you chose that front seat (1A) on the plane because you have a bad foot & NEED to put it up & we'll personally flog every Flight Attendant who complains about finding room for your cane and puts you in the 2nd row.
We'll also hammer all the window shades shut b/c we realize that no one can see computers or tv screens when inconsiderate passengers leave the windows open with bright sun coming in while most people sleep or watch the in-flight tv. We're also sorry that the bright light causes you migraine headaches- how stupid of the FA to forget to announce it was time to close the shades!
Your connecting flight will be here soon and we will now refund your entire ticket due to the fiasco. We'll also make sure that the man in the seat in front of you never flies our airline again & agree that his putting his seat down into your lap made the 1st Class seat useless. We hereby allow you access to seat 1A forever AND the ability to keep your cane WITH you in your seat.
We're also redoing our whole company and there will be no late flights, overbooked flights, or rude passengers or FAs In fact, everyone has to be polite! PLEASE remain with our airline! We DO appreciate the 80,000 miles a year you flew this year & 120,000 the year before, cane or no cane.
Here's your ticket for your connecting flight, let me carry you to your seat & allow you to stow the cane at your side so it is easy to access. We have a neck massage from both Will Smith & Anderson Cooper, chocolate strawberries and a personal pain doctor who will put you out for the entire flight. (Right after Will & Anderson depart.) Shall I flog myself in private or here, in your presence?"
Sorry- my life is mostly about travel these days & RSD/meds and travel don't mix well when the plans keep changing!
LMBO!!
I want every grocery store to reserve me a special shopping scooter that is always fully charged, that always is comfortable and, that does not move slower than a dead turtle!
I want skinny barbie hoes, rude people and teenage boys to STOP! Walking directly in front of me for fear that I they might get behind me and have to wait for five flippin seconds while I get whatever I need. They cut me off all the time and make me STOP so I don't run them over. Selfish, starbucks swiggin, egotistical little poops!
I want people to ask me questions instead of assume and talk about me as I am within ear shot..."She must be too fat / too lazy to walk" "She is far too young to use that, how lazy!!" "There is nothing wrong with her, she just doesn't want to walk" etc.
My family and my doc are really supportive...the only other thing that I would love for people to say/do would be Social Security
YES, you have been found favorable. It makes absolutely no sense why you would give up a full time management position with the state for 40K a year with full benefits to sit at home and pretend to have crippling pain/disabilities. Here, here is your hard earned 25 years of working disability payments of 870.00/month. We are so sorry that we made you wait. We are going to poke our eyes out now with a sharp stick.
All of the above would be wonderful!!!!
Thanks for the laugh T. HUGS!
The replies I want are the same. 'well, if you need help....'
I already have to live it, I don't want to dwell in it more. Lets just get the day over with.
Today happens to be a bad one, so I'm going to ask for a lot of help at work, but I'm a boss so I can do that, and I have good people working for me. I won't bother telling them I'm in pain, but they will figure it out when I slur my words from the aphasia.
Angela
AARP has TWICE written about cp and how patients get addicted...last article they even had a chart for the starting doses of meds!!! I wrote to the editor and blasted them...told them to stop writing such garbage and pretending to be doctors. No way can they write what dose of each med we should have! They aren't docs and shouldn't be practicing medicine in an article! I told them if they did it again I would drop my membership entirely. I tried to sound as stern as possible which was easy as I was TICKED OFF. I encourage everyone to respond to these kinds of things...maybe we can make it easier on the next generation of people in pain.
Anne
well my doctor is always insisting on exercise. it would be nice if he said
"Don't bother exercising, it's a waste of time and statistic shows that it doesn't help anyway"
now that would be a fantasy reply.
It would be cool to hear from an elderly person to say the following.
"Young people can get some terrible debilitating diseases or things happen to them and I am so sorry it happened to you. It must have been so difficult for you in your prime to be hit with such a painful disease. I admit us older folks always think that age has something to do with how healthy and well someone is and it just isn't true. Age has nothing to do with it and in fact it seems you are in worse shape than myself and I am in my 70's. The thing is I didn't start having problems until I was in my 60's, so at least I had a few decades of pain free living, you missed out on having your earlier years healthy and pain free and frankly it is a damn shame"
from my husband
"hunny, I think you are such a strong and amazing woman and I appreciate all what you do even with the pain and troubles you have you still manage to cook me fantastic meals and keep the home in good shape. With the pay raise I just received, instead of upgrading my cell phone service I am going to pay for a maid service to help you"
(husband isn't getting a pay raise by the way. It is part of the fantasy reply)
Now I get exercise running through airports and after my 2 year old, but darned if I don't always end up seated next to someone on a plane or in an airport who, when I rarely speak of my RSD (always b/c of the cane in winter) says, "Oh, just exercise more! It'll help better than the meds!" I can't help but LOL at that. That's when I bring out the big guns and tell the "exercise" person that unfortunately RSD has a high suicide rate, high rate of people being homebound, and if not treated properly, very often leads to death b/c of the unbearable pain and crazy things people will do to get rid of it. It USUALLY shuts them up.
A few months back I returned from Cancun seated next to a Vitamin rep. She noted the cane, we got to talking, and she gave me her card and catalog and spiel about how vitamins cure EVERY thing. To HER I wish I'd said in a straight tone with a straight face, "No, I prefer morphine- it's SO much smoother." But, I didn't, I just took the info, read it over and trashed it after the flight b/c I had too much to take through customs and immigration.
If only it were THAT easy. I felt like telling her that doctors would much rather prescribe vitamins than morphine so if vitamins worked we'd be the 1st to hear about it, but I don't like to be rude.
But, one never knows. Maybe there is a cure out there. I won't give up hope, even as the 15th anniversary of my 2nd bout with RSD approaches. Hey, maybe I should have a party!
Old Friends: I am so sorry I dumped you in your greatest time of need. I didn't understand your conditions and just did not want to be bothered with what I thought was crybabying. You were such a good friend to me now let me be a good friend to you. What do you need?
Family: OMG!!! How did you ever get through 12 years like that?? I can't imagine not even being able to get out of bed to pee!! What a jerk I was to not even call you to see if you needed help! And then to insist that you have the family over for a holiday, do all the cooking, and cleaning by yourself? Wow, what an ass I am!
Doctor: I know you are still suffering tremendously no matter what we try. I won't assume you can go on living a normal daily life just because you said you feel a little better. I know you still can't get out of bed everyday and do all the things you used to do before this happened. What is still hurting you?
The World: We know you look okay on the poutside sometimes (our pain is not always visible), but that you are still suffering and every little movement hurts. I won't bump into you or runn you over with my cart when you walk too slow for me, I won't say excuse me and expect you to jump out of my way when you just spent 5 hours getting to the store to buy that milk you now can't ;lift off the shelf without excruciating pains that shoot up into your head and down to your fingertips. Here, can I bring that to the cashier for you? I won't knock you with the container and I won't drop it on your foot.
Doctor: I suggest we do xyz... are you comfortable with that? Have you been getting proper pain relief? My job is to help find out what is going on... AND... to listen to what YOUR opinions are- WE will work as a TEAM because... Nobody knows YOUR BODY better than YOU!
There is no reason, for anyone, NOT to be treated for pain! I will do what ever I can to help you. That is why I became a Doctor. I am not here to judge you or belittle you... I know that you didn't choose this for yourself! It is NOT your fault!
Oh and feel free to walk by clueless on the way out (the one that gives you trouble and wears that stupid looking smirk on her face) and give her a ** raspberry**
After reading your post, however, my question for you is this: Have you considered telling the people closest to you how you feel?
I ask because it was pointed out to me recently that I was expecting people to read my mind - and I was. Mostly my husband. I was annoyed that he saying and doing things that I thought he should be, and when I told him this he finally said to me, "I'm not a mind reader! If you want something, just tell me, and I'll do it. That's all you have to do."
In my head I could NOT understand why he wasn't doing the most common-sense things, but he honestly just needed me to ask him or tell him to do them. He had no problem doing anything I needed him to, which is where I am a lucky ducky. He just needs me to tell him what it is.
My family and friends are another story. I'm blessed to have a small core group who gets it: my husband, my 2 closest friends, my mother and another family member. I'm extremely grateful for that. I've had talks with siblings, explaining to them what it's like, and how great it would be if they could make some effort. It helps.
I also think of it this way: Although it seems as though you aren't one who would be in this situation (and let's hope I'm not either!), if someone came to me and said, 'I feel like you're not taking my health seriously, and that's upsetting/hurtful/etc. to me.' ... I would take note, and FAST! Most likely your cousin doesn't have a clue as to how selfish she's been acting, and your doctor has no idea that you want to change your meds temporarily to see how they work.
I've read a lot of your posts, and I commiserate! My wish for you this new year is that your RSD becomes more manageable and you get more support from the people closest to you. Don't be afraid to speak up. You are there for others, and you need others to be there for you!
Happy New Year.
Smurfette.