Reflex Sympathetic Dystrophy Support Group

Hi everyone-

I'm going out on a limb, but something is really bothering me. There are people who for various reasons do not accept the use of pain medications. It wouldn't matter to me at all whether someone decided that they didn't feel like they wanted to take pain medications. It's a free country... (or countries). What makes me angry is either when people are against ANYONE taking pain medications and might make it more difficult for those of us who are truly in need to get the medication we need or when people act as if it is morally superior or even more courageous not to take pain medications. Does that make anyone else angry?

The thing that just this evening made me upset was reading about the poor girl in Florida who got the flesh-eating bacteria from falling in water while she had some kind of abrasion on her leg. She has lost one leg, one foot and both hands, I believe, and was not expected to live but is getting better now. First of all my heart goes out to her more than I can express and I have prayed for her since I first heard of how sick she was. I will continue to pray for her,too, and only want good things to come to her as she continues to heal and face life without limbs and other battles. It's unimaginable what she is going through. The thing I read, though, was this:

"Aimee Copeland despises the use of morphine in her treatment, despite its effectiveness at blocking her pain, her father said in a Friday online update on his daughter's condition. Her graduate-school study of holistic pain management techniques leads her to feel she's a "traitor to her convictions" when she uses drugs to manage her pain, Andy Copeland said."

The story went on to say what horrific pain she had and how courageous she was to take no pain medications.

I have to strongly disagree with that being "courageous" and wondered what you guys think. Why suffer IF you don't have to?

Tonight I absolutely HAD to go to the grocery store. I put it off for 3 days, I think, because I knew it would be bad. But I ran out of dog food and I could do without but I wouldn't have my Bailey go without! It was the worst trip to the store ever. I don't make it down every aisle or anything. I only got a few things, but it took about 10 minutes I guess. When I got back to the car, which was slow and VERY painful, I had trouble even speaking to tell the guy that takes the groceries out "thank you" and don't think he even heard me.

I got in the car and felt like I needed to go to the hospital but of course they won't do anything so I went home. I truly was close to a 9- my highest pain ever. Oh, and I HAD taken my pain meds before I went. I just feel like WE are the courageous ones. I think it is courageous to get up and keep taking breaths when every day brings so much pain and has for years for some of us. Some of you have made it for many more years than I have and I think YOU are courageous, whether you take pain meds or not.

It just feels at times that some people feel either morally superior or more courageous if they do not take pain medication. This statement does not mean anyone in this group, not at all. And, there are very valid reasons not to take pain medication. For some of us, the medication causes MORE pain and of course they should not take them. There are some people who have serious problems with addiction and might not be able to take some pain medications. Some might have side effects that would be too serious for them to take pain medication.

But, I don't think that NOT taking narcotic pain medications when you are in severe pain makes someone either morally superior or more courageous than those of us who do take them. And it makes me angry when things are said to indicate that someone thinks they are better or more brave than those of us who decide it is better TO take them. I guess some insecure part of me feels like others will read something like the article I read and then judge us negatively for our decisions if we DO take medications. There is already such an attitude in the media and elsewhere about the dangers of narcotics and the number of accidental deaths that keep rising. I just think when you then add this supposed morally superior attitude, it's not good for those of us who are taking prescription pain medications in order to keep going.

Also, you guys are braver than most anyone I've ever known to face the nightmare of RSD/CRPS pain and to keep fighting it! It makes me angry to think of how courageous you all are and that anyone would think of you as "less than" someone else because you NEED to take medication.

Tonight has been awful. I can barely type because of the pain and the pain is in my feet and ankles! And, I hate to brag, but I feel very courageous to just keep taking steps and to have made it through the grocery store and getting the groceries in the house even! It was SO painful.

Also, I have a question- My pain doctor always says things that seem to indicate he believes that controlling my pain is very important in keeping the RSD from progressing. Do you guys know of anything such as a study that would show the importance of keeping pain managed in order to keep RSD/CRPS from progressing? I would appreciate it if you know of anything like that and could tell me!

Thanks for listening to another rant. My pain has come down to an 8, but with brand new "patches" of pain.

My hats off to my courageous RSD/CRPS friends,

gail

Post edited by: maddiesgram, at: 06/17/2012 10:12 PM

Gail,

Sorry to hear how strong your level has risen! I do so agree with you and I have only had RSD for 2 years, can not imagine it going on for as long as otheres have suffered! I know I have been critized for taking pain meds. In fact when I was told that I had RSD I did refuse stronger meds but that was because I was afraid of what I had heard "OH NO, THEY GAVE HER WHAT!", "SHE CANT TAKE THAT!" etc....

I was not trying to be a hero, just afraid of being judged but most of all I was not educated on the meds! For along time I didn't go out only for therapy, pain management and the ortho, my god going for my yearly pap smear felt like an outing....lol My family feared that I my family was going to be a no show on Christmas moring, where we all gather, 21 of us, at my parents for breakfast. But thank to the meds, We never broke the tradition! Its all sad, but its the way to survive!

It is a choice, and a very personnel one. Thats how I found this forum, searching for info on new meds I was being asked to try.

Take Care!

Barb

Barb,

Thank you for saying this! I was about to post and say that I must be the biggest jerk in the world since nobody agreed with how this can hurt. I hate to tell you this, Barb, but your life is REALLY the pits when your pap is your big outing! Can you believe it? And, up until now Christmas morning is always at my house, so I can't get out of it even if I want to! I don't, though. That's one of the only times I get to see my kids and granddaughter, and next year my grandson, too!

Back to the meds, I don't think any of us wanted to start taking them and I was very slow to get on that boat, if you will. By the time I had had RSD for a year, only 5 months after diagnosis, I was taking Lyrica and some hydrocodone, but not getting along well. Then I got a new pain management physician and he had me try methadone. At first I said no way, but two weeks later I decided I had to. I absolutely could not take the pain anymore. And, my pain was small compared to many, but it was bad. The word "methadone" shook me and my family to the core because it has really serious connotations of drug addicts and herion addicts. So, I looked into it and the night I took the first one I prayed and sincerely asked God to be with me because I was so afraid that I might not even wake up although my doctor was very carefully having me start with a very low dose and work up. It didn't even make me drowsy. So, I got a little bit more confident that at least I wouldn't die from taking something like that. Now I'm on a mixture of medications and either they are no longer working or something because my pain lately has been very high every day and I'm scared to physically do anything due to the pain.

We can't let what others say and think affect us too much but I've not learned not to let it bother me (obviously). It hurts me to think that thers feel that I'm bad or not brave or anything when they have never even had pain like this. My son is extremely against all narcotic pain medications for people like us, for anyone who is not actively dying or for trauma for brief time periods. And, worse, he is a doctor, so he thinks he knows everything. I can't tell you how much it has hurt me. And, Christmas Eve was less than wonderful because of this. I can't hide the pain and he doesn't believe it's that bad. I hope your family is supportive of your decisions. At least my daughter is and has been very good to me. I'm so glad that you were able to make it for Christmas, as I'm sure it means so much to everyone in your family and we can't get these days back once they pass.

You are right that it's a very personal decision and only we know how severe the pain truly is and how neccesary the medications are. I feel certain that I would no longer be living without them. So, that's pretty big.

Thanks for saying something,

gail

Maddi;

I so agree with you. Ithink it is a choice but you are right if people hear you/we are taking meds they make that face. basicaly they are judging you. I hate that.

but you have to remember we know how much this thing hurts. I am sure you have heard me say this before: when I first got this I went 1 1/2 years without pain meds. I basically was trying to exercise (walk) and grin and bear it. It got to a point where I could not handle it any more and I truly thought about killing myself. If it were not for my 2 boys, I may not be here now.

That is when I decided since it seemed like the pain was not getting any better I went to pain meds. you know the pain meds do not take ALL of the pain away but to me it makes it more bareable. I think you have do what you think is right for you. I figure I want to have some kind of quality to my life and the pain meds help me do that.

But I do know what you mean, when I am talking with someone and talking about the crps they might ask what I take, i have learned to say "I would rather not say" and leave it at that. Now one day I was with this lady that I really like and we have a good relationship and I told her and of course she made that face. Luckily I was on the ball and I veyr nicely replied "don't judge me - you have no idea how painful this thing is". So it varies and depends on who you are talking with.

People are just that way, they always want to apply their way of thinking onto others but unless they have experienced this, in my opinion - they have no idea. Just know who you are talking to and tell them you do not feel comfortable telling them, or tell it is not of their business, or wahtever.

NO MATTER WHAT we understand your pain and will not judge you. I also hear about how courage people are when I do not take the pain meds all I have say is well good for them but for me I deserve to have some quality in my life..

that is my 2 cents...

PJS

I feel the same!It is really amazing what pain does to a person. I remember I would say,"If I had cancer God would have spared my life by now." Pain keeps us hostage and without the meds, well cant even imagine. My pain level daily is about a 5 - 6 on meds. My son, Connor, has a neuromuscular disease and we raised him to never allow it to own him, but for him to own it! He never prevents it him doing what he wants and he often throws my words right back at me. So without the pain medication I would be sending the wrong signal to an amazing young man!

I also feel that you 2 cents is actually priceless! Have a good night!

Barb

I've experienced many doubters during my 16 years with this monster, and I read a scientific paper around a year ago that's proven helpful, if I feel like engaging a doubter. Actually, I encounter very few of them these days, in part, I think, because I'm ready to *very energetically* defend myself (and, by extension, all of us) against ignorance.

This article, which was a very large retrospective chart study, examined the pain levels patients presented with due to anything that causes pain. They found that the average person goes through life without experiencing any pain level higher than 7/10. Hell, there have been times when I, and many of you, have lived in 6-7 pain for very long periods of time!

An event which they likened to a 7/10 experience was slamming your fingers in a car door at high speed. I suspect that broken ribs, 3rd degree burns over a small part of the body, etc. would also qualify.

I tell them that I can understand 7/10 pain, because I've known 10/10 pain for short periods. For me, it's so intense that all of my other senses shut down - sight, hearing, etc. No energy to scream or cry, because I'm just trying to live through it. It's a transcendental experience.

Now that I've managed to find remission and have some energy, I almost look forward to encountering someone who doubts the kind of pain we face!

Howard

Hi pjs,

Yes, I agree with trying to have some quality of life. I do have one thing that you might want to consider, though. Someone suggested to me that people might find out what medications I'm taking and then tell someone else and the next thing you know my house is being robbed because drug addicts are desperate. I don't have any idea how much that is something to worry about, but I've become very selective in who I tell that I have to take pain medication. I've sort of changed the subject before rather than going into it, and you're smart that you'll simply say that you'd rather not discuss that. They might judge us, but they might also share that information and eventually it get to someone we REALLY don't want to know. I also keep my medications in a small locked box that is hidden. This is possibly silly, but it's an easy thing to do. It also keeps any problem from occuring with children who might find meds, etc. My granddaughter couldn't get to where I keep mine, so there are no worries.

Thanks for your two cents! I was feeling bad for what I had written. No one can know what this pain is like and that's a fact!

gail

Hi Howard,

Thanks for the times you defend "us"! I was wondering if you think that scientific paper could be understood by a civilian, me. It's just that I feel like I'm not on level playing ground with this subject with my son, and if I could read a paper like that and have facts to talk to him about, maybe he would listen to me. I do appreciate you telling us about it. I know that my son has never had real pain. No accidents other than very minor, no medical problems, no surgeries. It's got to be extremely difficult for him to even grasp what severe pain feels like. I don't think he does.

It was interesting to think that slamming a finger in a car door could ever be compared to constant pain. That kind of pain is intense for seconds and really bad for minutes, but within an hour there is only a deep soreness. I've done it once! About 6 weeks ago I accidentally slammed the door to my garage on my finger and it hurt! I didn't know if the nail would come off but it didn't. It was a bit above where I think that would happen. It turned purple and then green and looked sort of bad but only hurt bad for a couple of minutes. I think taking a level 8-9 pain for 2-3 minutes is so very different than for 2-3 hours, and very different when you talk about weeks and years.

Pain does take our energy, too! You have that energy now that you feel better, and you understand that. That's probably hard for others to understand, too. I have a question- do you know of any papers or studies that talk about the importance of treating pain, so as not to allow the pain itself to do more damage? Thanks, Howard!

gail

maddi; I take that even 1 step further. when I have a prescription bottle that is empty I peel off the label and shred it. that way if someone happens to be going through garbage even at the dump when they find a prescription bottle they do not know what prescription it was and do not know who the patient was and even their address.

Barcon; I understand duz I think we deserve to have some kind of life but I have to be honest when people do that for the most part I am good at just ignoring them but there are times it gets to me. I try not to let it - I work at not letting it. But let's face it we are only human and we do care.

It sound at least you have your son and you all can compare your feelings and each of you can understand what the other is going through. and just be there for each other. when I found support groups for crps i was amazed at how that can make a difference because then we do not feel so alone.

like before i would doubt my self, Maybe I am making all of this up. anyway what I am trying to say is having someone so close to share your feeling/emotions with, not that is price less.

buest of luck to ALL of us. we are a tough group of people and we all should know we are here for each other.

Hi pjs,

So glad you brought that up about the labels! I do the same thing. I read somewhere that if you take these kinds of medications that is the wise thing to do. I take the labels off and tear them to bits. It might sound like it's a bit much, but it's easy to do and makes me feel like I'm being safe. Thanks for bringing it up...

gail