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