Medication
 

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. :hug:

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 :winky:

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 :cool:

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. :D 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. :grouphug:

There just so many things affected..
 

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!! :hug:

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

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 :eek:

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 :p

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 :grouphug:

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. :grouphug:

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.):)

RSD-Renee,

You can go on about it all you need!! So.. on another note are you still getting out 5 min 3x per day minimum? Have you set a goal for 6,8,10??? I know you are struggling in many ways as I am too but I promise that if you do this everyday you will feel better both physically and mentally. Please keep trying.. never give up.

My problem with the whole "you look fine" is more about people seeing me fine one minute and barely having enough energy to squeak out a 'hello' the next. I don't like being asked "what is going on" or for those who know that I've been through 12 major surgeries in the past 2 years.. it changes to "what now". They don't mean it to come across that way and truthfully that is how I feel as well.. but it still causes frustration in me because that just makes me all the more want to keep it all inside. Of course I like it when people do think I look good.. lord knows on the inside I don't so a nice compliment goes a long ways in making me feel good despite the pain. I don't expect everyone to "get it" nor do I want everyone to know what I am going through.. but I also don't want people blowing me off because they don't understand the ups and downs of this whole disease. If I were on the other side of this it would be hard to fathom for me also, I try to remember that. The other component to my issues is that I don't want people to baby me.. including my husband. In fact just this morning as I was folding laundry he looked over and caught my grimace, this made him jump up and offer to do it for me. That is what I don't want... I HAVE to keep doing things, the more people baby me the more frustrated I get.. damn it.. I have climbed Mount Rainier all 14,410 feet of it in the freezing cold, dodging crevasses and ice axing my way up with a head lamp.. I've got to be able to fight back pain enough to fold a load of laundry!! This is my internal fight.. I've just got to keep trying to find ways to combat the pain and keep moving. One day at a time (and sometimes it is one hour at a time).

Renee.. you are so sweet!!!

Look up, move forward and reach out...
Tessa

Thanks Tess. You are very sweet too. And I walked again a few days ago by myself for short time. I'm trying to do it as much as I can, but yesterday was not a good day for me. Maybe I'll try again today. It does help. I guess I should be glad when people say I look fine too, but the cynic in me thinks what their really saying is that I'm not at sick as I say I am. And that's so NOT true. It's feels like insult to injury to me when they say it and it really hurts. I had two major surgeries last year a few months apart. One was over 2 hrs and the the other over 6 hrs. The drs thought on top of everything else I had with my rsd, endometrosis, abcesses and cysts, that I also might have ovarian cancer. Luckily, that wasn't the case, but it was a terrifying time. It physcially and mentally took a toll on me. I looked at the survival rates for ovarian cancer and it didn't look good. So I prepared a will to protect my family and started looking into cancer clinics just in case I did have it. And cried alot. Again, I'm so thankful I didn't have it. RSD and Fibromyalgia are enough of a challenge for me. I'm so sorry you had 12 surgeries. That's awful. I hope you don't have anymore. And maybe I shouldn't be so cynical of people who say I look fine. I guess I would have a hard time understanding rsd if I didn't have it either. My husband says I should look at things in a more positive way. I guess I need to work on it a little harder. I also think I'm still in the angry state of the grieving process of having rsd. I thought I was past it, but now I'm not so sure. Well thanks for caring and hope you have a good day.
PS - Mountain climbiing? That's SO cool! Me, I'm a beach girl. Or at least I used to be. I always loved to swim, especially in the ocean. Well thanks again for caring so much.Take care. :hug:

So far, I don't take any regular medication but that is primarily because I need to keep a clear head for work. I don't think anyone should feel bad about taking the meds they need.

I sometimes get frustrated with the comments made by well meaning people.

People will say how much better my hand looks, and it does. It looks so much better than it did when I first returned to work. The pain is also not as severe as it was when I first returned to work but I am still in pain. But there is another aspect of this pain - it is chronic pain. So, while on any given day I am in less pain than I was at the beginning of the year, I have now been in constant pain since December 2012. That is exhausting. It wears you down. I also haven't slept through the night since then. I know that most of you have been in pain for so much longer and that both inspires me and breaks my heart for you all.

Or, people will relate my CRPS pain to something they have had. For instance, I recently bought wrist warmers. I have started wearing on one my right arm to keep it from getting cold. Now, I don't need to tell any of you how insanely painful a CRPSy limb is when it gets cold. However, people will say things like, oh yeah, I broke my (foot, arm, whatever) years ago and now it gets sore when I get cold. And I'm thinking...no, not like that at all, not even close. But I can't say that. They are trying to be nice. Still, in the back of my head I'm thinking...is that what you think I'm experiencing? Do you think that is all that is wrong with me?

I try to find the balance between explaining and not whinging or appearing to be a whinger. I know I don't post very much but I do read all the posts. I'm just not always up to posting. But knowing that all of you understand what I am going through is such a comfort to me.

I don't know what I would do without my CRiPSy Crew.

:grouphug:

Thanks KimA! Glad you popped in for a minute.

I hope some day that the pain settles enough that I can drop the meds until then, I am going to really work on how I feel about myself in taking them. haha.. and continue to find other ways to cope.

Yes, chronic pain wears us down as does lack of sleep. I'm glad you are still able to work and I hope you are able to for as long as you desire to!

haha just earlier today someone was telling me about there broken arm and how it hurts when it is cold. I wasn't in a good mood at the time and the person often makes comments like that so I abruptly said... well I have 14 screws in my hips, a rod from my knee to my ankle with 6 screws, a plate in my shoulder with 8 screws and they took 2 ribs out of my chest... and NONE of those areas hurt when it is cold!! The look on their face was PRICELESS.. I doubt they will insinuate that I'm being a wimp any more.. well at least not to my face ;) It was mean, I know. I felt bad but this wasn't the first time so I let my mouth run amuk.. oops. maybe I should have read your tip about "balance" first... hahaha I'll try to behave myself next time. :Doh:

We all have moments it gets too much. I have a sister thats a known druggy and she was complaining about "pain". I told her when she gets off the drugs has 3 surgeries on her knee and feels like her leg is going to collapse from hurting or spontaneously combust then I would talk about pain and giving her ONE norco every couple weeks which is all I can take. I know I'm a jerk. I said this in front of my grandmother and she hollered at me for being mean. My sister said I probably didn't even need the meds I was on as I was still walking around after my son. At the time I wasn't on a cane yet. She saw me limping and white faced too. Yes I LOOK fine and yes I act fine to an extent untill my pain crosses that threshold. Then I'm white lipped to keep from screaming. I have decided I'm not going to let others bring me down. If they think Im faking then oh well. I know the truth. Keep smiling guys and don't let the cynics and ignorant get you down.:grouphug:

Allanira,

You are right we all have pain but, in your own pain try not to lose compassion for others who also might be suffering. The thing is every person experiencing pain, loss or other emotional crisis that impact their lives are dealing with there own "mountain". The level of pain may not be what yours or mine is but, to them it is there worst just the same. Because no one can possibly imagine/fathom this type of pain unless it is experienced. Losing compassion for others will further isolate you and drive you into depression.. I'm not saying it isn't irritating or even maddening but try to keep in mind that everyone's battle no matter how big or how small is still a giant battle to them at the time for your own sanity.

For example based on what you said to your sister I could say this: Don't talk about pain until you have gone through......

July 20, 2011 Left first rib resection
Aug 10, 2011 Right first rib resection
Oct. 31 2011 Left hip/pelvis Periacetabular Osteotomy (PAO)
Feb. 15 2012 right foot exotosis osteotomy
April 6 2012 Re-operate left hip/pelvis
June 12 2012 Right hip/pelvis Periacetabular Osteotomy
Aug 22 2012 Cervical C3/4 -5/6 laminectomy foraminotomy
Nov. 9th 2012 Re-operation left hip/pelvis
Dec. 28 2012 Re-operation right hip/pelvis
April 24 2013 Re-operation right hip/pelvis
June 20 2013 trial spinal cord implant
July 8 2013 permanent spinal cord implant



You see what I am saying?? No one will ever understand the kind of pain we are in but that shouldn't make us less compassionate towards others who experience pain no matter to what degree.

How I keep my sanity - I do my best everyday to help myself, by taking more responsibility in my own care than hope I have in any treatment options including medication. I believe 100% that my ability to deal with the long term affects of this disease will lay more in my own hands, than in the hands of anyone else including the doctors. I get up everyday with one goal in mind.. to find ways to cope and to create a plan of action so that when there is absolutely nothing else any doctor can provide to alleviate this pain, I won't be caught with my "pants down" so to speak. I hope to have a solid set of things I can do myself to cope long before CRPS has progressed to that point.. if I don't do that now it will be to late. I owe this to myself and to my husband!

Sorry for rambling.. I just hate to see you waste time trying to convince anyone how bad your pain is.. it just isn't possible (in my opinion). If people aren't supportive then distance yourself from them - negative influences are detrimental to all of us!

Be good to yourself,
Tessa

My sister is very manipulative. Yes I do see what your saying and keep my mouth shut a lot when someone tries to say I don't hurt as bad as they do. Its only when they keep going on and trivialize me that I bite back. Its the whole 1 or 2 slaps I'm quiet its after the 3rd I bite. I also have some hypochondriacs in my family and they are a blast. I have 1 person in my family with MS and she is on a cane, walker and wheelchair depending on how bad she is that day. Shes the only one that can make my sister back off. She is trying to wheedle pain meds from the ones that need it. I have even caught her red handed with my pain meds thats I had hidden when she went to use the restroom in my mom's bedroom. I now keep them locked in my truck and only my husband and I know the code for that. I do know some people do feel it when the cold hits. My grandmother does now after breaking both femurs due to osteoporosis. She can tell you when a storm is going to hit before the weather people know lol. :grouphug:

I am so sorry your sister is being manipulative! It really is hurtful when especially family members aren't supportive. I can't say I know what you are going through but, I can share from personal experience that sometimes it is better to distance yourself from situations like that for the benefit of your own health (and the health of your children). Lord knows you don't need the additional stress while you are caring your precious cargo.

Regarding medications - this is why I personally don't want anyone friends or family to even know I am taking any type of medications. There are only two people (and you all) outside of my doctor and pharmacist who even know about that part of my life. I've watched people come out of the wood works in the past when someone is ill/hurt hinting about sharing meds.. I personally don't want to deal with that so I keep it to myself.

It is interesting how some people after braking bones or with joint disorders do seem to notice weather changes. I never did after many broken bones in my younger years.. but now with my CRPS any temperature change felt on my legs sends me to the moon in pain. It is like an instant electrical current running from my groin to my knees and the night time burn is much worse the colder it gets. I've spent the past couple of weeks testing different types of technical gear to see what will help this and just today I think I have found what will work which I will share about in another thread later. There is also a type of CRPS referred to as 'cold CRPS' that I think makes temperature changes more difficult for those that have it. I was told I have it which is a bummer considering where I live.

I do hope you and your sister work things out..
Tessa:hug:

I usually take a couple pairs of my husbands socks that are becoming holy and cut out the toe area after soaking them in fabric softener and making sure theynarensoft I pit those on my bum leg in layers 2 on top 2 on bottom. Then my usual socks on my feet. It helps a little but not much. If you did find something I WANNA KNOW.i have only tried the amitriptiline and gabapentin so far well and the norco. I dont share meds well. Thats why they are locked up if Im outside the house. There are only a few people that come to my house and she isnt welcome there. I won't have drugs around my babies and I might be getting custody of her son. I wont have them around him either.:grouphug:

Getting this disease was horrifying for me for a lot of reasons. My mother was a post op RN? "get up, you're not hurt" was spat out at me from the time I was a very young child. A lot of other issues develop when you are being raised by that mentality. We were all, always supposed to not complain, not whine and pretty much, lie, and say we are OK, even when we were not. You did that or you paid for it later, when you were alone. My father had substance abuse problems when we were in our teens and I was the only one of 5, who fought for and with him. He was a very good person and though I say it jokingly some times, I truly believe that his social drinking became a lot of other self abusive behaviors because of my mother. Supposedly, there is a predisposition to addictive behavior and I was terrified when I felt and was diagnosed with RSD. I was also married to an alcoholic nd drug addict for 10 years, when I was young and made stupid decisions. Through these 10 years of my RSD, My mother has done her sick duty of relishing my diseases and pain, and she has also done her best to affect what my siblings know and think of my being on narcotics, disability, etc. Everything that is so difficult to swallow when it is happening to you, was made immensely worse by my still actively abusive mother, well into her 70s.

About 2 years into the RSD, when I moved to another state to get out of the cold of Michigan, it took my new anesthesiologist several months to convince me to take the extended release oxycodone. I understood what addiction was but didn't really have a grasp on the fact that a dependency did not have to be a addiction. It is still humiliating and embarrassing to have so very many things wrong with me, but accepting to take and fill that Rx was the best thing I did in the last 10 years. Fortunately, I have not had any issues at all with feeling the need for more narcotics. I have been able in the last 10 months now, reduce my narcotics by 1/3. I'd LOVE to not be taking any of this Rx Crap, but after trying to get rid of my Lyrica a few months ago and having that blow up in my face, I know in order to get through the day that I have to suck it up and give in to pharma! at least for now.

I'd rather be able to tolerate holding my niece's hand than not be able to stand having her touch me. If people in my family think I am not safe and wouldn't allow me to drive with my nieces and nephews in the car, so be it. They are not my children. I have not swam a lap in 10 years, although almost all of my life I have swam sometimes 2-3 times a day, 20-60 minutes, every opportunity I got. I resent that. I resent that I can no longer get on my bike and ride, I resent that I can no longer lift weights and work out in a gym. I have gained a miserable amount of weight that others find offensive and eating as cleanly as is humanly possible will not shed these pounds. More than being in pain and having to take the pain, I resent the other things that RSD has stolen from my life.

I had finally gotten to a place of joy, where I found and married a wonderful man, who didn't mind that I truly hated my mother, and that where I was with that was not negotiable. A man who when I told him I didn't want or didn't want to do something, loved or relished something, he allowed me to be me and own those feeling and decisions. We were financially sound and we were healthy and I love my work. We had just come to the decision that although we could not have our own children, we could at least love children who did not have love in their lives and were exploring adoption and fostering, those were still two things we were looking I to and looking forward to. Life was good, David will tell you, those first 4 years of marriage (his first) were great. And then I went to the restroom one day at work and slipped in a pool of water on the floor... Had I gone earlier or later and not used the stall where the leak was, who knows where and what I would be. I am sure everyone here feels the same way...everyone here has lost so many of the same things... And life for all of us probably turned on a dime and now we are left to deal with it... To make the most of it... To fight and survive. I used to be a fighter, what ever the hurdle was, I would fight to overcome or out live it. The horrible boss would move on and I would take the department to some place great, far exceeding the evil boss's sales figures and respect and care for the employees who worked there, hypothyroidism... I would always eat right, no exception and I would exercise and exercise was meditation and made me physically and emotionally strong... My mother still though I was over 40, would attempt outlandish things to try to hurt me emotionally, if she couldn't reach me physically... I worked very hard to detach from her and to understand her illness so that I was not her victim any longer. My father had substance abuse issues... I would make sure to keep my body and mind strong and not allow chemicals to destroy the things that were important to me in my life. These are the things that RSD has tried very hard to take away from me, and it's doing a great job of beating me down most days, but I'm not giving in, I am fighting and I hope with all my heart that I can out live this one more menace in my life. I hope with all my heart that David will get to say that though there were a lot of tough years that the first 4 and the last 4 were great and with lots of luck, we will get more than 4 more great years. He certainly deserves it.

I honestly hope one day that there is a cure or enough understanding to control RSD without a bucket of drugs and when that day comes, I will happily enter a detox facility, clean out my system and clear up my head and hopefully skip out of that facility and into my husband's arms. And then I will find the nearest swimming pool and just relax in the water.:D

Wow Syl. Thank you for sharing so much of your story with us, that is one hell of a life you lead - your mother sounds like an evil person in the true sense of the word, and you are amazing to have done so much with your life despite her appalling efforts to crush your spirit. Sounds like you have the right attitude. I am full of admiration.

You are so right to detach a need for medications that help you to deal with the pain and other symptoms your health throws at you, with a dependence on narcotics. This isn't meant to be a flippant remark :p but I remember watching an episode of House where Dr House was saying about his dependence on a painkilling drug for his leg. He said that if a certain drug worked on his pain enough for him to function, and continued to work on that pain for many years, did it make him dependent on them? It did, but in a pharmacology kind of way, not because he was 'addicted' to them. He said something like 'am I addicted because I take a pill prescribed to me by my doctor that helps my pain and lets me live? Of course i have taken them for years - I've had the pain for years. I am dependent on them because they are the only thing that lets me function - I do not choose to take them for no reason'. The point is that addiction (as I understand it) is taking a drug for a reason other than what it is prescribed for....like continuing to take it when the need has gone.

I don't think anyone with CRPS should beat themselves up about taking drugs. This is one nasty condition to fight through everyday. Some of us need a lot of help, others can manage on less, but the pain is real, the disability it brings even more so, and if there's a med that can help us claw back a bit of the life we lost, then of course we should take it if we can.

Syl, you are a marvel and should be very proud of yourself. Hope you have a good day today, and a better one tomorrow...

Bram.

Thanks Bram , I have flippantly told family members, "I will not steal your china or rob a liquor store if I am no longer prescribed these medications. I will deal with the situation and get on with my life. You know, it's not just that people can not even begin to imagine the pain another person is in that ticks me off, it's that they won't even take the time to consider the possibility that someone could be in that much pain, and that a family member is insensitive in that manner makes me shudder.

The last thing I or anyone else who has this disease, would be to intentionally abuse, lose, or disrespect the medication they are prescribed. The thought of taking more than is on that label would put me in a place where I would need a pill and not have it. Sorry, I would not do that to myself. I know the pain I struggle with, when I have that Rx. And, like a lot of RSD folks, I have been through that period of time where I had little or inappropriate medication to deal with this pain. I certainly do not ever want to go back to that place and I will never use more today and end up with not enough for tomorrow.