Hello everyone,

I was wondering if any of you feel guilt shame or embarrassment about not being able to cope with pain without the use of medications. I've been really struggling with this. Like many of you, I grew up being told to "buck up" or being told pain was a sign of weakness. Up until the ugly beast of CRPS II entered my life I think I handled pain and rehab with that mindset.. now though all that has changed and I can no longer fight it on my own. Well.. I could but life would be sheer misery and the mental effects would become evident quickly.

In the beginning I was only taking opiates when pain was out of control to the point I was thinking more about amputation than anything else. Then my doctor talked me into starting on a low continuous dose supplied via patch. I was reluctant but finally gave in and I was amazed at how much a difference it made. Prior to using the patch I had started to really withdraw from friends & family because just the thought of trying to hide my pain for even a couple hours became torturous. Wincing/crying behind closed doors kept anyone else from seeing my "weakness". I also found it so frustrating just thinking about trying to explain to someone how even placing a piece of paper on my leg felt like a torch or heaven forbid someone try to hug me.. would they see the look on my face if they inadvertently brushed my legs/hip area? And if they did.. the rest of the day was going to be very hard.. this just added to my anxiety and fear. With the use of the patch along with all the other items in my pain tool box things became a little easier..

Then the weather changed and my pain has skyrocketed and no matter what I try it just doesn't stop. I'm limping again with every step, cringing and clenching my teeth throughout the day because the sensitivity is so bad..
So my doctor recommended increasing the dose in the patch. I am scared, ashamed and full of guilt that I am even considering doing this. My fear comes from worrying that at the rate things are going I'm going to be a medicated zombie in short order. The shame and guilt come from my upbringing and also from knowing that people don't understand and I'm sure wonder why I can't handle it. Its been mentioned on many threads how difficult it is when we "look" fine from the outside. I'm generally not the type to worry what anyone else thinks but this is becoming more of issue in the daily mental fight with this. On the outside I look very fit & athletic but on the inside I am just barely hangn' on.

Sorry for the rambling.. but I was wondering if anyone else can relate and if so how do you deal with it?

Thank you for listening!
Tessa

Tessa I think I do understand because I sometimes thought "how do people get addicted to pain meds?" because I really always hated them for myself. Well, then came this beast of a disease. I still take as little as possible, but I get nerve blocks every 2 weeks in my neck and how much drugs are in those? I know I don't focus as well as before and I only take 1/2 of the meds. prescribed for me but my Dr. still wants me to take full doses.

Yes I completely understand.... I'm kind of half way along the process. I've always hated taking medicines of any kind, although I've never seen it as weakness in others if they do - for me weakness has always meant those who moan and kick up a stink to get out of life when they have no real reason, rather than those who struggle on against horrible odds. I've always been sympathetic to illness, if someone told me (or I was told) they had a condition, I would go and look it up and find out a bit about it. I think that's the scientist in me

However (BIG however lol) although I'm not taking any major pain meds at the moment - only because the ones I have do diddly-squat - I completely would take them if I could balance the pain relief they have with keeping my mind for my job. And if the pain really ramped up again I would take anything that even dented it slightly... My normal 'oh no not for me' attitude of my younger self has been replaced with the desperation of CRPS pain that cries out for anything that will take it away...

Just the other day I saw my pain doc and she made the mistake of commenting on how well I was coping. Well that was the end of the brave strong Bram veneer of normality I was determined to keep up! I broke down and just said it was all a lie. I seem to be ok because that's what I feel I have to do to get through the days, and get through all those situations with other folk - the stuff where you can't keep bringing up your pain, or you can't face explaining it to someone new who will just look as blank and unconvinced as everyone else was initially... Sometimes I convince myself for a while She was fairly shocked I think, and so apologetic when she had to admit there wasn't anything else she could give me except opiates - and I am so scared of going down that route.... I asked about experimental research, existing stuff like IVig etc, and asked her to give my details to anyone who might be able to think of something to try. Oh the desperate fox came out of her lair that day

We each do what we have to. I too am experiencing the skyrocketing pain (good analogy) with the change of season - I told my pain doc that the previous two months of summer had been like a little window on what life used to be like before this thing got me. I could almost see myself again. Now having that window slammed shut in my face and having to face up to the pain and mobility issues of before is panicking me if I'm honest. I said to her that I was more scared of this coming winter's pain because my left arm is now in the mix, and if I do have to go back into my wheelchair, that arm isn't going to be able to cope well with pushing myself, and I need that independence.

Oh dear. Woe me! Alas, alack! Poor Bram. Sorry, didn't mean to go on like this lol. There we are, all done. Deep breath, square shoulders, plaster on the smile. Oh how I hate this charade.

Sometimes I sit here and it is only the knowledge of all of you out there in the beyond that gets me through the next hour of pain. It's like a little blinking neon sign in the fog, saying 'it's ok, you're not alone, we actually do understand, we're with you, you can do it' If I didn't have you guys I think I'd have lost the plot completely.

Thanks and have a decent day with minimal pain and lots of smiles.

Bram.

I don't at all. It could be that before I got this monster I had already experienced chronic migraine, RA and various other pain issues on and off through my life (I'm 40 now). I have always worked either massive overtime at my last job or 2 jobs. So I took whatever they gave me to help so I could try and maintain my life.

The problem I do have is getting my family ( mostly my mom) to understand that I need the pain medication and to not worry about me becoming addicted to the pain medication. She has gotten better about it and I think since I also take other medications (Cymbalta, Tegretol, etc) to help control the pain that helps her understand.

People we all feel this beast. Especially in the cold. I do take norco every now and then. I try to get by with just heat, and elevation. It doesn't work. I even had a friend tell me once I was acting like an addict because I freaked when we went out and couldn't find it. This was pree diagnosis. As soon as I found it I was fine. I didn't even take any till we had been walking around the mall for a couple hours and I was walking worse than a person on 1 stilt lol. its the fact I wanted to make sure I had them so I could take the edge off the pain.
Bram don't feel like you need to have the happy go lucky charade here. We know. We aren't uneducated about this disease. We feel it too.
Az I know what you mean about thinking constantly about amputation. I still do. I have even told my drs just cut the darn thing off PLEASE just cut it off to make the pain stop. They even have it written in my records that I have said it to them. Heck I have even thought about cutting through and just leaving the magor arteries attached and having them finish it to make the pain stop. All have said no because my leg is still healthy.
keep smiling and know we are here for each other.

Thanks to all who took the time to share!

AZ-di Part of my fear is the addiction even though I realize that when there is a true need for the medication it isn't as likely. I've just seen too many people go down that path.. and that scares the crap out of me.

Bram Maybe I should have clarified "weakness" it wasn't about chronic illness more about broken bones, lacerations etc., I've always had compassion and never judged anyone who took things for major disease or illness.. it is just that my (our) illness isn't seen.. unless I'm not wearing clothing, then the symptoms are easy to see but I'd better keep my clothes on I think some of my feelings come from hearing people say.. "Oh I have nerve pain" "the zapps and numbness" even if they don't say it, it is easy to see that they think I am being a wimp and should just buck up because "we all have nerve pain". Honestly every time I see a commercial for Shingles.. I want to scream and say how about CRPS/RSD... I've had Shingles after battling cancer and YES it is excruciatingly painful but CRPS is way, way worse but, I don't see commercials about it.. I was talking to my husbands Aunt the other day and MMJ got brought up. I casually mentioned I was considering trying it out and she immediately said "no no MMJ should only be used for cancer patients" .. it wasn't even worth trying to explain that the pain we fight daily is even worse than cancer.

It is so hard to keep a "game" face on. When pain is soaring the effort it takes to keep composure so that others aren't put off, or affected by my nightmare can completely wipe out my coping skills for the rest of the day. The other day I had to stop in at the grocery store.. was hoping to grab our essentials and get out of there. Ugh.. small town inevitably you are going to run into someone. I did, and she.... hugged me.....and then stood right next to me leaning against me engaging in conversation with another friend... almost huddling... it took everything I had to keep my composure because I didn't want her to know she was hurting me.. I didn't want to explain what was going on with me nor did I want her to feel bad for her innocent actions. I know you all get this.. just one of those days. By the time I got out of there I was even more miserable and now I had a 45 min drive home... ugh all I wanted to do was pull over and cry! 2 years ago I was running marathons, climbing mountains surrounded by glaciers, flying off of snow covered cliffs with adrenaline pumping and being driven by the excitement of fear. Now I cry just because someone hugged me and innocently brushed up against my legs. These are the times my anger of the situation flares.. I pull out but, it happens and honestly still quite often.

The medications don't take the pain away but they do help me cope with it better, they also help me get a little more sleep. They do cloud my brain and compromise my ability to react but because of my TBI I fight those things even without meds. Ultimately their use became a necessary evil for me to function.. it is the fear of tolerance and increase in the dosing that terrifies me. At the rate the pain is skyrocketing, and the reduction in effectiveness I can't see how this will play out. I've got to keep trying to find better ways to cope!!!

It's funny (not really) how people will see you and say "you are coping really well" or "you look so good" when if they could just feel for 10 seconds how I feel they would realize what they think is so far from the truth.

haha Bram you made me chuckle a little.. square up the shoulders, plaster on the smile.. awesome!

Yes, if it weren't for this great group of people who understand and listen when we just need to share- I would already have my own straight jacket!!

Thank you all!!

fbodgrl I hope your family eventually understands. My battle is internal as only my husband and my best friend (and doctors) know that I am on continuous meds. I just don't want to go down that road of explaining and unintentional judgement. I admire your strength!

Allanira lol.. I've been trying to figure out how to elevate my pelvis.. haha.. just picture me upside down all day For me pain meds wouldn't work on their own, it is the combination of other things that make them even a little effective for some of the symptoms. My pitfall was that after the initial nerve injury that caused the CRPS (but before it was diagnosed as my ortho didn't have the knowledge) I underwent a second operation where more damage was done and the CRPS spread 10 fold. My nerves have been severed surgically but because of the CRPS I still feel them.. they say I'm battling CRPS and phantom pain. So just an FYI to anyone dealing with this.. DON'T ever have surgery in the area of the CRPS unless your life depends on it!! Surgery in the CRPS area is dangerous and has devastating effects for someone who already has CRPS. I hope that once your baby is born and you finish breastfeeding (if that is what you plan to do) that you will have a great team of doctors who can provide you with a full tool box of things to help alleviate some of your pain so that you can enjoy every second with you children.

Thanks again for all your input and for making me feel less ashamed/guilty. I very much appreciate it.

Now if I could just get rid of this head cold...

Have the best day possible,
Tessa

Hi Tessa. I completely understand. I have struggled with this too, as I am sure many of us have. I was always the strong and tough one. I had a high tolerance of pain since I have suffered from some sort of pain majority of my life...well before RSD hit me more than 22 years ago. My husband always joked that he married me for my muscles. Now I can hardly do anything...it is disheartening. You should not be ashamed of anything. If your pain is skyrocketing, then you have to make adjustments for it...even when it includes increased medication. If I had the option to take something that I could tolerate and it would take even the edge off, I would be all over it. Unfortunately, I cannot take most meds. I have demerol and it does not help the pain, but it makes me not care as much...sometimes it will take a small edge off. My husband will see me struggling and crying in pain and he will ask if I have taken anything...if not, take it! I toughed it out for a very long time and that made people think that I wasn't as bad as I really was. It only made me worse. I used to care what people were saying and how they acted, but that only hurt me. I realized that I need to focus on myself and if they don't get it, well that is their problem. My sister used to say stuff to me about taking pain meds, she stopped once she realized how bad I was.

My Mom always got it and I know it is because she took me for the SGB's 22 years ago. She saw everything firsthand. When everything got worse (2009), no one else really got it. What helped is showing the McGill Pain Index. There was also this article/letter from I found on the rsdhope website...http://www.rsdhope.org/letter-to-fam...-patients.html I shared this on Facebook in hopes that family and friends would read it and get a better understanding of what I am dealing with. It helped quite a bit. I highly recommend using this when someone is having a hard time "getting" it.

Sorry, rambling here.

Bram - I am with you! Coming here and seeing so many others who are going through the same thing helps me so much! I hate that you guys are suffering, but glad you are caring and showing such awesome support. It helps me greatly...so thank you!!

Tessa, I hope you (and everyone else) can get some relief soon.
Nanc

You all just touched my heart with the honesty in which you talked about a subject that is demonized for for us before we even get started. It seems that everyone else is more worried about what we are addicted to then how we are "really" doing.

I started this ordeal with the same mindset that most people are raised to have. The one where pain meds are bad, very very bad. We will be addicts and worse off if we go down that rabbit hole. Well in the first few years I tried everything but narcotics because I feared that rabbit hole.

It finally brought me and the doctor to tears as I would beg him to amputate my leg. Through his tears he would explain that even if the leg were gone, the pain would still be there. I would just look at him like he had rocks in between his ears. Over a period of about 3 years I begged and begged to have the leg amputated, and again and again he would just look at me through his tears, and tell me it would do no good. He would each time suggest trying opoids, and each time I would tell him I did not want to become an addict.

One day, after much thought, and much pain. I decided that we had tried everything else....why not let him prescribe some Norco, or whatever he felt would be necessary I could use to at least take the edge off this pain that I could not control. He gave me MS-Contin, and Norco for the breakthrough pain. I had no idea what he meant about breakthrough pain, but trusted him and his judgment.

The world became much easier, and less painful then I had experienced in a very very long time!! I was actually getting out more, and actually was looking forward to seeing some grandkids. Something that I avoided due to them always causing me more pain then it was worth. Even my wife was enjoying visiting with me....life was good for the first time in a long long time!!

Then I was stricken with a kidney stone!! Oh my a whole new pain, but seriously not as bad as RSD, and that is the truth LOL! But in the ER the very first thing they asked was if I was on any medications......I was, and boy was I! They tore into me! Calling me a drug seeker, addict, and almost everything they could think of, and I was treated differently all of a sudden. They actually put me on a head trip that took me months to shake myself out of. Although, they found an 8 mm stone, and admitted it was a large and painful, they didnt want to add to my addiction, and treated me like I was some sort of escaped felon

It really played on what I believed before RSD, and really messed me up mentally. All that, just to say....once I started not caring what others thought, or what the ER thought, or how I was raised to think, and focused on what actually helped me to feel better. Did I start to not care about all the others and what they thought.

The pain meds were helping me, and that was priority number one. I wasnt going to let some ER folks, or some family and friends talk me into thinking I am a junky, addict, or drug seeker! They dont live in my body, and dont have to deal with what I have to deal with, and it doesnt matter what any of them think of me as long as I know who I am, and that I am not hurting like I did before I decided to try pain medicine that could be addicting.

I have come to realize that we will probably have to be life long medicated people in order to have any kind of semblance of a normal life. Sure I still get the looks in the ER, and I still get the little jabs from well intending family and friends. But I just look at them as the ones that have a problem.....one society has created, and they can believe whatever it is they like, and I can do whatever it is that makes me feel better

Today I do not take the ms-contin anymore because it dulled my thinking waaaay to much. But do take a few norco as needed, and use morphine IR for the breakthrough pain, and that isnt every day either. I am happy, and enjoying my life on the terms that I have been dealt....which isnt ideal in my mind, but better then no life.....which is how it was before pain meds.

So dont let anyone, or anything sway what you do to relieve pain. Let you and your doctor find the things that work best for you. Just know that there is probably nothing that will be 100%, but whatever you do is A-ok, and none of anyone's business as long as your happy

I never used to take as many pills as I do now. I never liked them. But now I take a multitude of meds. My husband got me a pill tray that holds my weekly pills, so that I remember to take the right ones at the right times. My memory from the neurontin makes me very forgetful, so this tray is a lifesaver. And when I go out, I always make sure to take them with me. I hate having to depend on all these meds, but need them to help control the pain and anxiety. My dr told me that I'm NOT an addict because I'm taking all of these pills, because I'm taking them to help control my chronic pain and anxiety, NOT to get high.
It still stinks that I have to rely on all these meds to help me to barely get through each day, and the fear of ever having to increase them again scares me. I don't think my stomach can endure much more meds.
But right now I haven't had to increase for the last year, except for an additional 100 mg of neurontin each day.
I try to hide the pain and get dressed everyday, even though I don't go anywhere most of the time, and get really annoyed when people say that "I look okay".
Looks for rsd people don't mean anything. Looks don't show the constant pain we feel inside, and the looks that they see don't show the hidden bedsores, and other sores on my back, arms, legs, head, ears and mouth that never seem to want to heal. And looks don't show my swollen feet and hands and twisted wrist and fingers which I usually have covered with socks and gloves because they get so cold and red and sore from my rsd
So when people tell me I look fine, I get out my pill tray now and show them what it takes to "look fine". They usually quiet down after that. I'd show them my bedsores if I thought I wouldn't get in trouble for mooning them.
Anyway, I don't think taking meds is a weakness when it's needed for the constant pain we feel and next time someone says you look fine, maybe try pulling out your pill tray (and then maybe they will understand then just what it takes for you to look fine.) Hang in there Tessa and please don't be embarrassed about taking all those meds. You are not weak. You are taking them to survive a horrible and chronic disease. And though I know its hard, for I struggle with it too, try not to let what people say bother you. No one can ever understand what we're going through unless they are going through themselves, which causes them to say stupid and ignorant things like "you look fine". Anyway, I hope you feel better about this and yourself. You are a rsd survivor. And that in itself makes you strong.

PS- People who say "you look fine" also don't see the bone loss I've endured from rsd to my many broken and lost teeth and hip. Or the toll it takes on my immune system, by making me sick all the time and making other health problems I already have much worse
Sorry I'm going on about this, but it's a pet peeve of mine when people say "I look fine". I'll stop now and try to enjoy this beautiful fall day. (I hope you can all do the same.)