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.

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.

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.

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.

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

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.

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 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.