I'm feeling pretty down today, I'm afraid. It probably had a lot to do with the 4th of July holiday, when (as usual, with hosting a family gathering) I always overdo things, and have way too many responsibilities and way too little support, both physically and emotionally.

I have had CRPS for almost 5 years, which set off a firestorm of other autoimmune disorders, including arthritis and fibro, making my life incredibly challenging. My CRPS started in the ball of my left foot, making it too painful to put any kind of pressure on it, which meant I had to give up driving a stick-shift vehicle because I could no longer work the clutch. That was the first thing to get taken away, followed soon thereafter by tennis (my love) or any kind of sports. Even walking became so incredibly painful (even with nerve medications and pain medications with aggressive treatment from my docs) that going for walks with the family got axed. That was difficult too.

Then things have really spiraled downhill the past few months, when I have found myself doing more and more outings in a wheelchair because the CRPS has spread into the ball of my right foot. The wheelchair thing became tough because it didn't fit easily into my vehicle when I had all of my kids in the car too. So I was blessed to have found another vehicle 6 weeks ago, a larger SUV, in which we can fit my wheelchair AND my family for our outings. It has really stunk to face reality of family outings from a wheelchair. To make matters worse, two nights ago I was driving my daughter home in the new SUV and had a harsh awakening that I couldn't effectively push the brake with my newly spread CRPS in my right foot...that the SUV was large and heavy enough that it requires more force to stop it--which I can't do safely.

I had already talked to a local business that installs disabled person hand controls in cars, because I knew this was likely coming. But to have it all come at once, to know not only am I in the wheelchair, but now I have to step up my timetable and hurry to get hand controls has really hit hard.

I don't have much of a support system--I have a husband who doesn't "get it" and pretty much ignores my CRPS and arthritis and who expects me to carry on with business as usual, taking care of the kids and house and him as well as continue working my full-time medical transcription job (which, blessedly, I can do sitting at my computer at home). I have lots of friends, but only one friend who "gets it" (I'm blessed to have her in my life!) and she's incredibly busy with an intense trial of her own at the moment, so I am really struggling to come to terms with my "new normal." I have started seeing a counselor, which I feel like is going to help with helping me adjust, but my heart aches because of my lack of family support to lift me up in this trial and tell me I can do this.

It's discouraging, you know? I guess I just wanted to throw this out there and hope that there were others on this forum who struggle with things like this too, and maybe who can share how they made (make!) it through the reality of this "new normal." I'd love to hear your story so hopefully I can realize I'm not alone in this fight.

~Ali

Hi Ali.

I just saw your post and wanted to just type a quick post to say that I am sorry for all that you are going through and I'm glad you reached out. There are many great people on this forum and I hope that they can pop in and say hi as well. I just too some meds to help me sleep...so I'm keeping this short at the moment but will reply with my story in the morning.

You are not alone in what you are feeling and we have all been through things like this. I think one of the hardest things about CRPS is that unless you have it...you can never really understand it. I have a great support system generally...but even with that there are still many of the same frustrations and feelings that you have because as much as others sympathize and try to support...they don't "get it"...not really...and it's hard not to be frustrated and upset much of the time.

But it's a double edged sword...because you see...I want to do things myself. I want to be independent. I DON'T want to be treated like I am broken or "less than"...and yet I also want help and support. And somehow people are supposed to psychically know which of those two things I want at any given moment? Ha...even I don't know what I want most of the time. As hard as it is for me...I can't really imagine what it's like to be THEM either in this situation...I know many times my loved ones feel helpless (and then of course I feel bad that they feel bad...and so on). I get frustrated...they get frustrated...it's just an awful situation all around sometimes.

But you are not alone...just know that. Again...will post more in the morning...but I feel myself getting loopy and I better get upstairs before I can't.

So...my story...I won't start WAY back at the beginning...but will try to give a short version of when I was at my worst...and how I came out the other side.

This was...gosh...a little over 4 years ago where I will start. I'd had CRPS for about 1.5 years at this pointin my left ankle/leg. I got a lumbar sympathetic block and instead of helping...it caused my CRPS to spread into my back, then my neck, then my shoulder, then my torso, then down both arms, and then into my hands. I ended up in a wheelchair...unable to walk or stand at all. I had the following symptoms in addition to the normal pain, temp changes, allydonia, swelling, etc: dizziness and blurry vision, hallucinations, rapid HR, tremors, nausea and vomitting, poor balance, lack of sleep, and trouble concentrating. I was getting bounced from one dr to the next, started and stopped on meds constantly and abruptly...it was a MESS...they checked me out for a bunch of different things until ultimately it was confirmed as spread of the CRPS. Turns out I ALSO had seratonin syndrome which was causing some of those other symptoms too. So I got off all meds and then we tackled the symptoms one by one. I had a great physical therapist who came to my home and a great doctor who listened to me and was willing to try anything to help me. Great support on that front. I won't go into all the treatments as that's not what you were asking for.

During this whole thing...I was off work for about a year before being released to go back...then another 6 months before I was actually able to GO back because work tried to fire me because I was disabled and had to file a claim of disability discrimination with the EEOC (which I won). While all that was going on...I was being paid by work comp for about 8 months of my time off and then they stopped paying me. I only mention all of this because it can put considerable strain on a relationship when finances are difficult. Luckily...my boyfriend who I was living with and his mom were very supportive and we made it through until I got settlement money, was paid back pay, and got back to work.

Despite the CRPS, I was able to put all the stress and drama of that period of my life behind me and life was good. I use a walker...but other than that I was off all meds. About 2 years after that...I got pregnant and now have a wonderful 19 month old daughter. Unfortunately...about 9 months ago I fell off a ladder at work and have been in bad shape since then...unable to use my walker I am basically trapped on the couch most of the time now as I can only walk for 15-20 minutes before the pain gets too severe. It's a big blow to me because things were going so well and despite the pain and using the walker...I was really happy with my life and how things were. I'm still hoping that they will be able to do something to help my shoulder get better so that I can get back to where I was before. But...if they can't...then I will have to do what I did before...and this is where I will get into how I got through and was happy with my "new normal" before.

For me...it was about accepting the reality of things. It doesn't do any good to ignore the pain and try to go on as things were before...because things are not the same. I was 29 years old when I started using a walker. It made my life better (less pain because less weight on my leg, helps with balance so it's safe for me to walk, I can walk longer because it takes longer for the pain to get too severe, it keeps people from bumping into me in crowded places as they don't always notice a cane, I always have a place to sit, and I can carry stuff that I couldn't otherwise). The walker is just a tool that helps me live my life to the fullest. Don't fight using medical equipment if it helps you...use what you have to and do what you need to do to live life to the fullest.

I made a lot of small changes around the house to make things easier for me. Cabinets and drawers got reorganized to make it easier for. I do what I can to minimize the number of steps I have to take. With a baby in the house...we set up a fence in the living room so that I didn't have to chase her around or worry about what she was getting into until she was walking. Now she has the run of the place except the kitchen, stairs, and bathrooms where we either have baby gates or keep the doors closed. Everything is baby proofed so that I don't have to get up and chase her around. I keep a stack of children's books on the couch where I sit so that when she wants to sit in my lap and be read to I don't need to get up to get books to read to her. We also keep some at lots of other spots around the house so that there are some wherever we are. Same with toys. Out on the deck...we have put the baby fence to good use and now I can take my daughter out there to play without having to get down off the deck. She has a sand/water table out there, a play house, and a picnic table...and I can sit on the comfy chairs while she plays to her heart's content.

I have taken the time to really learn my limits and learn to listen to my body. I know just how far I can push myself before I need to rest. I break up my day...do a little cleaning, then rest for an hour, make lunch, then rest for an hour, and so on. It takes all day to get things done...but I am able to do it without putting myself into a flare. When my daughter isn't at daycare...then those days I don't do any cleaning and instead just focus on her, making meals, and resting as much as possible when I can.

I'm lucky that my boyfriend helps a lot with things...but as he's working full time and long hours...there are just a lot of things that don't get done...and that's OKAY. The house isn't spotless...and that's OKAY. I've had to accept that I can't do everything I want to...and he's had to accept that too. That's our reality now...we focus on the important stuff and the other stuff can wait until later...it all gets done eventually...at some point...in the future...

When it comes to cooking...I've had to come up with creative ways to get done what I want. Before my daughter came along...I ate a lot of fast food or stuff that could be delivered when I wasn't doing well. Now...I want her to eat "real" food...healthier stuff then take out. So I now have several strategies for making sure the cooking gets done but is easy enough on me that I don't put myself into a flare up that leaves me bed ridden. One...is the crock pot. I've found a bunch of very easy meals to make in the crock pot that either have just a couple ingredients OR that I can put in the freezer and have on hand whenever I am having a rough day (just dump the prepared freezer bag contents into the crock pot and done). Two...grocery delivery. I use PeaPod once every couple of weeks to make sure we have fresh food in the house. I cannot go to the grocery store and if I wait for the boyfriend to do it...we will starve (he doesn't mind going...just never seems to have time). Three...frozen foods. We always have tilapia, chicken breasts, and various other frozen foods in the freezer as well as frozen veggies. These work for quick meals with little to no prep work. And finally...I always have a handful of individual toddler meals by gerber on hand for those days where I don't have any energy to make my little girl a meal at all. They're healthy and they work in a pinch when I need every extra minute of rest I can get. Have plans...and then have back up plans for when you need something even easier. It's taken me about 6 months to really get the hang of easy meals that are healthy and taste good...but I'm finally in a groove with all this.

I don't know that my specific ways of doing things will help you...but the point is that I had to stop thinking like I used to and doing things the way I used to. I had to alter the way I did things and make it work for me so that I don't put myself into flare ups. The pain is a reality...it will be there regardless...my job is to take care of myself and find ways to still accomplish the same stuff even if it's in a different way.

I don't know what to say about your family not supporting you...because it might sound harsh to say what I want to say. It sounds like things cannot go on the way that they have been...you NEED support. I know how important it is to keep busy and do the things you want to do...but on the other side you also need help to keep things balanced. I didn't see the ago of your kids in your post...but they should be helping out with things around the house...doesn't need to be huge things...but they can and should help with that. It doesn't take much time to straighten up a room, dust, vacuum...whatever it is that needs to be done. And your husband can and should be helping too...whether it's house work or cooking or whatever...he also needs to be helping out. The only suggestion I can make is to talk to your husband and see what can be done. I know he doesn't "get it" per your post...but whether he gets it or not...whether he understands WHY he needs to do these things...the bottom line is that he needs to help you out with them. And if he cannot or will not...then those things just don't need to get done I guess...that's how I would do it.

Funny(ish) thing about my boyfriend. Sometimes he tells me he does "EVERYTHING" around here. Not to be sexist (okay...maybe a little)...but maybe it's a man thing. He does everything...except shop for groceries, buy baby diapers, cook meals, feed our daughter, give our daughter a bath, buy baby supplies like diapers and wipes, give our daughter her bottles, pay daycare, buy our daughter clothes, make sure our daughter has clean clothes to wear, read stories to our daughter, wash dishes, enroll in his benefits, and so on. But yeah...he does EVERYTHING around here. Sometimes I think it's just a perspective thing...and they need a little reminder when they get whiny.

Your frustrations and feelings are totally normal. I've had to go through the process twice of accepting a new normal...and if the doctors aren't able to fix what is wrong with my shoulder then I will have to go through the process a third time. It's hard to go through this acceptance period, to learn how to balance things, to grieve for the the loss and the things that you can't do anymore...but it's SO worth it. Learning to ask for help and finding the balance between wanting to do things yourself and needing help is one of the harder things...but it's also important for your quality of life.

Hugs to you...hope I didn't ramble on too much...believe it or not this IS the short version of the may thoughts going through my head and of my story.

Also...don't be afraid to ask for help here too. I have learned so many little tricks to make my life easier from people on this forum.

I know from experience over the last 2 and a half years with CRPS that it is more difficult than anyone around us gives us credit for...that being said I also know how hard it is to live everyday trying to accept the "New Normal" as well. I have found though that I have good days, and I don't mean the pain, although some days are better that way as well, but I mean days when I can find a way to do some of the things that I used to do. To be able to do things with my family, although sometimes not the same way I used to do them, but I am so grateful to be able to do these things.
I wish I could say it was easy to get to this point but it wasn't and depending on the pain level some days, I am still fighting to stay there.
I learned that even though I have lost many things financially, materially, and even my husband - I have still got so much to be thankful for and I am going to keep moving forward into this "New Normal", and really when you think about it - all those things can be replaced.
I have found that Qi Gong (modified) has been a help in my struggle, if you want to know more I can send you the exercises. It was designed as a study to help Fibro and CRPS patients and had tremendous results.
Although, my pain level is still very high, it is much higher without the Qi Gong.

I've had this for 21 years now (almost), and it doesn't get any easier over time, trust me.

I'm just back on this forum since a long absence (hard to cope). And I gained something called Menière's disease in the mean time.

Boy, when it rains, it pours!

In any case, I just wanted to wish you good luck, and there is support on this forum, should you not get it IRL!

hi al. i hope you're feeling less alone and overwhelmed now. i have had rsd for about five and a half years and i understand how scary and lonely it can be to live with an illness that most people never heard of, don't really know what treatments are best and don't know what the outcome will be for each of our futures. being that i also believe that rsd is an autoimmune disease (though i am not a dr) i have since suffered from fibromyalgia, endometeriosis, abdominal issues including gallstones and acute gastritis, osteoarthritis, osteopenia in both hips, massive infections in my gums causing me to lose five of my teeth so that i can only chew on one side now and my most recent health issue and my scariest next to rsd is my heart. i have been in the hospital recently because i am having trouble breathing most of the time and though i've been through many test, my drs tell me that my heart looks ok but my blood was thick and i was not getting enough oxygen to my heart. no sign of bloodclots in my lung and no signs of heart damage. i do have irregular ekgs at times but the most the drs can offer as a reason is that it may be muscleskeletel (sp?) and anxiety and depression (panic attacks) which i also suffer from. i know from what i have read that rsd can cause swelling of the internal organs causing restriction of blood to flow to the heart through the blood vessels. i am afraid that rsd has been affecting me internally now as well as externally. and when i try to explain this to drs in hospital i just don't think they understood fully what i was saying. so i have printed out info on it made by drs and will send it to them. i know they tried their best but it would have helped if they could have just looked up rsd to understand that what i was telling me was true.
anyway to get back on point, i understand what you're feeling and am so sorry you feel this way. i have learned that the best way to deal with those feelings of fear lonliness and depression is to learn as much as you can about rsd so that when you feel that the people in your life don't understand, you can explain it to them. i also find that having a strong support network like the awesome people here at NT helps me get deal with the lonliness. and knowing that their are others that are understand what i am going through helps me deal with my rsd pain and depression a little better. learning to trust your instincts about your body, becoming your own best advocate and connecting with people that care and understand like here at NT helps to cope with those feelings. at least it helps me. and please know that i understand and care and am here if you want to talk. you are never alone here at NT. and though rsd can be different every day, trying to just take things a day at a time and living in the moment helps reduce my fear a little. i hope you know that you are not alone and that you feel better soon.

I am so sorry for all that you are going through ((((((RSD ME))))))) Thank you for sharing your struggle with us. I will keep you in my thoughts and prayers.
peace
zinnia