I've had CRPS for almost two years. I got it after a knee scope and it's now throughout my left leg and foot, and within the last two months it's started in my left arm.

I used to be so active. I payed a lot of tennis, ran up the hill with my kids, was proud of the fact that I wasn't growing old before I needed to, like so many mums I saw... Now I shuffle round my home hanging on to walls and furniture, I have crutches for anything outside the house but can only walk for a few minutes before the pain stops me. I have a wheelchair for everything else. I am not me any more.

I watched a thing on tv today, and I suddenly realised that I have no real friends now. I have a few mates, but no one really close. I have one friend who pops round sometimes for a cuppa, but she's very independent and has plenty of other friends from before we met. So many people I thought were my friends have just drifted away....they just aren't there now. They don't call, don't visit, and it turns out they weren't friends at all.

I feel such a burden. Nobody really wants to go anywhere with me because they need to help me with my chair, my crutches, my pain. I try to be cheerful when I'm out, I have a 'chair-face' that I put on, I'm chirpy and smiley and positive, I don't want to be someone other people see and feel sorry for. But it's still a drag for my family and anyone else. And I hate it. I hate being this person that people avoid.

Does anyone else feel like this? Please say. I need to know I'm not as alone as I feel. Most days I'm ok, I'm positive and I do stuff. Today it's just all caving in on me a bit and I feel so alone with this gnawing, biting, savage condition.

I send anyone who reads this a (((hug))) because then I've got one myself

Thanks.

Bram.

I don't...not anymore.

Every once in a while I feel a little twinge when I WANT to do something and I can't or when I think that I used to be able to do something so much more easily before...but it passes pretty quickly.

I think it's important to think about it as life just changing. My life changed a LOT after I graduated high school early. Okay...not exactly the same thing...but your comment about friends drifting away reminded me of this a lot. I started working and my friends were still in school and we just didn't have as many of the same shared experiences. Same thing could likely be happening with your old friends who have drifted away. I would guess it has less to do with them not wanting to spend the time with you...but more because you just don't have the same experiences as them.

Most of my new friendships are with online friends and I find I am closer to many of those people than I ever was to my "in person" friends. And these do not suffer with my limited mobility and new limitations. Most of them were met through an online cross stitch forum and as we have gotten to know another we have found many many other shared interests and have grown very close. They know we better than many of my own family.

A lot of it...I think...has to do not with just trying to keep a positive attitude but in making the most out of what you have now and now dwelling on what you have lost. When I don't feel like going out...I might invited people over for a movie night or something. I don't think people honestly want to avoid you...but the uncertainty of what you can and cannot do and also what you might enjoy (vs what will be more trouble than it's worth) can make people hesitant to invite you along on outings.

Also...have you tried a rollator (4 wheeled walker) instead of crutches? I used crutches for a while but that got to be very difficult for me because it caused more pain than it helped and once my RSD spread to me arms it became impossible. The rollator takes a lot of weight off my left leg (RSD in left ankle) and doesn't stress my arms out nearly as much as the crutches because you don't have to push down that hard to make a big difference in the weight on your leg. It also gives you a place to sit whenever you need it. It gives you a way to "carry" things without using your arms. You could even put your left knee up on it and "scoot" a bit if you need to or to use your two arms freely (also works if you just sit for a minute to do whatever it is so long as you can reach whatever it is sitting). Just a suggestion as the rollator has made me much more functional and really allows me to do a lot of things I couldn't if I was using crutches or even a cane.

For me...it's all about enjoying the life I have now and being grateful for everything I have now. Find new interests and make new friends that way. Remember that a phone works both ways (I personally am terrible at making phone calls...but this is why the online friendships work so well for me).

We all have bad days though. What you are feeling is not at all unusual...just don't let it get you down. In one of my worst moments when things were SO awful and I was being bounced around from one doc to the next and stuck in a wheelchair and yet ANOTHER doctor seriously let me down I got just so upset. My boyfriend told me I got one day...ONE...to feel sorry for myself and then tomorrow I had to pick myself up and get back to work (not work work...but to work finding a solution for the issues I was having). This was really great advice. I took my one day and then refocused and moved onto the next thing. I was able to seriously re-evaluate my current treatment plan and make some of the necessary changes (like finding a new GP) and from there everything just kept getting better.

Admittedly I was very lucky though to have a very supportive boyfriend, friends, and family who helped give me the strength I needed throughout the process. It makes things much easier for me because I had that going in. Focus on those good things and the bad/difficult things just are what they are. Your life may be different and things have changed...but life changes and change doesn't have to be bad. I'm VERY happy with my life now (despite the constant pain) and that's what I try to focus on. And as I said...I get those little twinges sometimes because it's more difficult to do certain things now with my limitations...but the important thing is not to dwell on them. I think, "Ah...the good old days" and move on.

Take care and good luck.

edited to add -- I was typing while Catra posted -- but I think we said nearly the same thing.... just a little different way.
________________
Absolutely I understand... I've had this so long now, though, it is just the way it is. I miss being creative - being able to play the hammer dulcimer, do paintings, garden, cook great food (with lots of preparation)... And doing things with friends. My friends don't come around much any more either. Most I have not talked to in years. Then, a few won't give up on me. Can't hold a book for long so even reading is hard. Comprehension is bad anyway. I've tried my best to be thankful that I DID do those things. Many people never do anything that they want to do - and "back then" I used to try a lot of new things. I never did much traveling because I could not afford it - and now won't be able to because of RSD. I've found some Pinterest Boards of people who post wonderful photos and when things are really bad and painful, I spend a couple hours looking at beautiful scenery, flowers etc. My elderly Mom will be 88 soon, and lives with me. Her memory is starting to fail pretty fast. Even if I could get out more to go somewhere overnight - I can't now because of her. So -- yes, I sure do miss the life I used to have.

I think the thing is, you've got to try to concentrate on what you CAN do and learning to get enjoyment out of that. I can't hold a book and I loved to read. So, I saved up and bought a lower end Nook - I can hold that! And, I can make the type big when my eyes are blurry. I get e-magazines and e-books from my local library. They can be downloaded from home, even at 3 a.m. I always liked big, long books.. but find that short stories or essays take less concentration and work better for me when my pain is up. My Nook is black and white, so I do get the e-magazines on my computer so I can see the color photos.

I can't make complicated big meals and have people in like I used to - so now I try to make simple, easy to fix food for Mom and I - but I still try to make it good. That satisfies my "cooking" creativity. Swapping out a flavored salad dressing, like Bacon Tomato for Mayo on a turkey sandwich. Small stuff, but .... keeps my mind going and engaged.

I get a great deal of companionship and joy from my service dog. She goes nearly everywhere I go, so we are pretty close. She gives me a reason to get up, get going each day. To try to force myself to go for walks - because she needs them. I need them too - but I wasn't doing it for me - but I'll drag myself around at least a little bit for her - or, if nothing else, I'll stand in the yard while she goes around sniffing and throw a toy for her.

I used to be a very avid gardener - I had one perennial bed alone that was 120 x 40 feet... plus thousands of different daylilies I was breeding and selling. I was a daylily judge and went around to people's gardens looking at the flowers that were up for national awards. I cannot do that anymore. So, now I moderate a daylily forum on a huge website that covers all kinds of plants. I answer new people's questions, organize online events, etc. I have dictation software, which makes it pretty easy to do. Does not need attention every day, and can be done at any hour, and takes just a couple hours a week if I am not feeling up to it - or a few hours a day if I am... those days I start new thread, make up games, write articles for the forum.

Now I have a very small garden 30x15 feet - of my very favorite flowers, that a friend helps me maintain. Just enough I can putter a bit when I am up to it, and cut some blooms to enjoy indoors. My friend does all the physical stuff. I do hire her since she does it for a living and I don't feel I am as much of a burden that way.

I recently got an aquarium and started an "aquascape" tank - lots of plants, some fish - it's feeding my need to grow things, fun, pretty, relaxing.... all in a space 12" x 12" x 24". I put it where I can easily see it from my bed, since I spend a lot of time there. Yep, it's tough when it's time to clean it - but I can do it. It doesn't need much, since it has so many plants. I rest before I do it, and I rest after, because it HURTS... but the other days - man it is so great to lay in bed and look over at that beautiful tank and watch the fish for a couple hours... it is almost like meditation for me. Especially on bad days.

Sit down and think about all the things you have done and enjoyed, and try to think of how you can re-invent them to do them now. Make a list of things you always wanted to do or try - and see if you can figure out a way to do it. I bet you can come up with a few things.

RSD can affect the brain - concentration, memory, etc. - and the more you keep your brain involved and engaged the better off you will be. Even if it is just doing Sudoku puzzles.

Wow...that is all so cool. I find it so inspiring to hear how we all learn to adjust to the changes in our lives and find as much as we can to enjoy.

I run a cross stitch forum because that's something I did a LOT of before (still do some now but not as much as I used to because I physically can't).

I also miss my reading and got myself a Kindle...but I actually have gotten really into audio books. For some reason listening to books is easier for me to comprehend than trying to read. This allows me to enjoy some nice, LONG books and even some series of books. I love it!

Oh...and I have a little dog that does wonders for keeping me company (especially when the boyfriend isn't around). Not a service dog but the unconditional love and companionship just cannot be undervalued. At about 5lbs she's not a burden on me physically and is pretty calm so that works out for me too.

Thanks so much for sharing what you did.

I am so sorry to hear how hard things have gotten for you. My crps is only in my left arm, and not quite as severe as yours, or many others. I was only diagnosed in November, and it is still early in my "disease". I'm hoping it wont progress past this point, sometimes it doesn't and maybe I'll be one of the lucky few. Although it is not as severe as your case, I am still pretty limited in a lot of things. I have has to change they way I do, pretty much everything. From cleaning, to showering, and working. I only have a small glimpse of what you must be going through.

Something that has helped me greatly is seeing a psychologist who specializes in pain management. We do hypnotherapy & bio-feed back. Sometimes it can help control the pain, but mostly I feel MUCH more relaxed. Physically I feel more relaxed, which can be part of the pain battle. I also helps bolster my confidence and reduces my stress level a LOT. I really think you should look into that type of help, if at all possible. People fail to realize, that when you have a chronic pain syndrome SO much more is affected than your physical pain. There's sleep loss, cycles of depression and feelings of hopelessness. And as a mother I can deeply empathize with your feeling of inadequacy. There, it seems to me, no greater frustration and to see the look on my daughter's face, when I CAN"T do the things I used to able to do with ease. Or if I have to pull back in pain because she grabs me the wrong way and try to gently tell her NOT to do things like that. Or try to explain why I can't pick her up right now, or do something as simple as fold her clothes. I don't think anyone can fully understand something like that until you've gone through it. And from what you said, You probably feel a great deal more of that than I do. You are in NO way a burden, though. I know it can feel that way, but this is where a psychologist can come in EXTREMELY helpful. Most of what you are feeling (besides pain) is caused from a constant pain induce depression, and frustration due to your completely changed way of life. If you aren't already I would suggest not only to see a psychologist be see about a low dose anti-depressant. TALK to your doctor about this! There is NO shame in the way you are feeling, it is very normal when you are in our positions! Here's a link that might show you how "common" it can be


http://www.acatoday.org/content_css.cfm?CID=2187

I know how it can feel when the people you though you could rely on disappear. It is true when Adversity Strikes, your true friends surface. A lot of people just DON'T understand, what it is like to CONSTANTLY be in pain, or upset because you have a hard time, if you even can at all, doing something as simple as dishes, or sweeping, can cause agony. Plus all the BS that goes right along with it! This is where sites like these can come in handy. You can find a common ground and understanding that you just can not get anywhere else!! Try to hand in there, this kind of "depression", I think is closer to a kind of desperation that can make you feel, inadequate, useless, especially when you were once very active and involved. It changes EVERYTHING you were used to doing, but it is NOT totally hopeless. There are ways of coping and adapting, and creating a NEW life and ways of doing things. No it is not ideal, and sometimes you can feel like crying or screaming from frustration, but you are still YOU. And anytime you need an ear or have a question this community here can be a wonderful support!!

You are NOT alone in this struggle. I really think seeing a therapist would be beneficial for you. Is there any sort of medical program where you are that might be able to help you have a nurse or caregiver, who can help with the day to day things? Would, if you have it, your medical carrier cover something like that? AS I said my condition isn't as severe as yours is, and my heart goes out to you. It's hard enough dealing with what I have, and praying it doesn't spread or get worse. Please though don't feel like a burden. It's not like you can magically make all this go away. Also don't lose ALL hope! My friend fought it off after 4 years, it had spread to both legs, and internally in her lower organs, but through physical therapy, medicines, and herd work, shes has had this in remission completely for I think 5 years now? So it is not ALL lost. Please feel free to PM me or ask questions here, even if it's just for some moral support!

I think we've all experienced some degree of what you are feeling. You are among kindred spirits when it comes to that!
I hope you can find some modicum of relief soon!

Sending you a big hug. Feeling down over what we use to do, happens with any severe, limiting illness or condition. I jumped from planes, went horseback riding alot. I do get depressed over the things I use to do. Try to keep that good smile on your face. No matter what it is better, than being horribly sad all the time. Push on, and find some things that make you happy even when you are pain. Keep coming back here for support. I also hope your doctors have given you enough help so that you can have some good quality of life. Speak up to your physician if you are not getting enough relief. I am in your corner. ginnie

I have a little dog too. She gives me so much love and affection. She's a Bichon so she loves nothing more than laying on my lap having her ears rubbed. She takes short walks with me and I get out a lot more because of her. If I have trouble sleeping, I'll take her into bed with me and somehow I always doze off. cailinruaidh

I do. Over time, it has gotten better, but I had to see someone. I also had to bury the oldme and realize she was gone and reinvent myself. Find new things to enjoy. Hope that some day I will be able to regain some of my old life. Try to keep myself occupied. I'm sorry. I hope things get better for you. Just wanted to say yes, I understand!


((((hugs))))

TK

I can absolutely understand how the isolating that feeling is. I think CRPSongbird, daylilyfan and Catra gave excellent advice!
I'm also going to look into finding some kind of psycho-therapy. Anti-depressants help. I'm on Cymbalta because I'm told that also has effect on the nerve pain.
We all need support from one another - That's why I joined this group!
For now my posting is slow and painful - my crps is in left wrist and hand.

I also found American RSDHOPE and they have CRPS ribbon pins. I bought some to give to friends and medical professionals. Most of my friends and family just don't seem to want to understand the condition. Maybe the ribbons will help bring awareness.

Thanks so much for the hug, Bram!
After 16 years I still feel the loss and have down days or down times. I think it's only human to miss the life I had. If I didn't miss it, what would that say about the life I had? But I'm glad that I have those memories to look back on. I suppose old people feel the same way! But then I get busy doing something like the twitter account I have about RSD research. I don't need to do it every day.
I keep a list of Things To Do for when I'm down. Music I like, old sitcoms etc., my favorite at the mo is 3s Company on You Tube.
A hug for you too. Hope you have a better day tomorrow. cailin ruaidh