Reflex Sympathetic Dystrophy Support Group
Reflex sympathetic dystrophy syndrome (RSDS), also known as complex regional pain syndrome, is a chronic condition characterized by severe pain following injury to bone and soft tissue. The most common symptom is burning pain. The patient may also experience muscle spasms, local swelling, increased sweating, softening of bones, joint tenderness or stiffness, restricted or...
I recently joined DailyStrength in hopes of finding others going through what I'm going through. Although we may not all be the same, we are alike in one way HERE. I'm 44 yrs old, have worked since age 14 (the past 6 months is the longest I haven't worked!), some of those years with 2-3 jobs (2 FT jobs & PT weekend job). I've been with my husband since I was 21, helped him raise his 2 boys (they were 1yr & 3yrs old when we met), now helping to raise 2 precious grand daughters (ages 3 & 7 and the light(s) on my life).
On May 8th, I broke my left ankle when I slipped off of the bottom (5") stair of our deck. I was off work for a few days, put into a boot & given crutches to walk. After a few weeks back to work, I was rushed to the hospital on May 30th (from work, no less) with severe pain going up my leg & my thigh ! I had developed a blood clot/deep vein thrombosis (DVT) in my left leg. I was put on blood thinners (pill form & injections into my stomache) & moved to ICU, where I stayed for 6 days. I was sent home, with blood thinners (again, pill form and, now, do-it-yourself injections) as well as pain killers. The only way I was somewhat comfortable & having minimal pain was when I was lying down or sitting with my leg & foot elevated above heart level. Every time I put my foot down, I started to feel pressure building in my toes, then in my foot & calf. My foot turns red & purple each time. The pressure & pain becomes so bad when I stand/walk/or sit with my foot lowered for 5-10 minutes that I had to lie or sit down with my foot elevated above my head! Here it is, 6 months later, and it is still that way! I was diagnosed with Raynaud's syndrome in August, then found out that the clot damaged the valve in my popliteal vein (deep vein behind the left knee) which caused that pressure & pooling of blood in my foot & leg. There is no surgeon that will "touch" the vein because it is a deep vein and the only one in the leg that returns blood to the heart! In late October, I was also (FINALLY) diagnosed with CRPS. I was sent to a pain specialist who immediately put me on a regimine of medications (Lyrica for pain, Elavil, which is normally used for depression, but, according to the pain specialist, works with the Lyrica, and Hydrocodone, also for pain). I have had 3 sympathetic lumbar injections in 2 months, and have my 4th already scheduled for Dec. 6th and he's already talking about the implant. I go for physical therapy 3x/wk- I have been on crutches since May 8th, when I initially broke my ankle. 4 days ago (when I had my 3rd injection), the pain specialist told me to "throw away" the crutches and I have now graduated to a walker. I was a "wiz" on the crutches- with the walker, it takes me 4 times as long to get around, which is time I don't have before the pressure & pain get me "down" again. My husband, bless his heart, has been doing most of the cooking (I help, sitting down, with my foot elevated, as much as possible), cleaning,dishes, laundry, shopping-all of the things I took care of ON TOP of all of the things HE wants to get done! He's been out of work for 3 years (he's a union tradesman) now, and I am lucky that he is home to help me, but, I feel that, although I'm getting a little stronger, I'm going to be "like this" for the duration....he's been wonderful through everything and thinks of me first, always. It's a huge change from being the caretaker to being the one needing to be cared after....I feel lost & lonely most of the time, even though he's here. He understands I'm in pain and always asks what he can do to help, but, I can only tell him to just be here.
I just wanted to reach out to others like me and have someone who knows what I'm going through to share with.
My husband and I both lost our mothers withing the past 2 years (the two mothers were friends to eachother, and both were my very best friends) If I needed to talk about anything, I could talk to them! I miss them both daily, but, it's the bad days that I miss them the most- I know this group can't replace them, but, I'm hoping to make some new friends to share with.... I hope to hear from any or all of you-
Sorry such a long entry.... this is MY (true) story. I'm a great listener and I'd love to hear yours.
On May 8th, I broke my left ankle when I slipped off of the bottom (5") stair of our deck. I was off work for a few days, put into a boot & given crutches to walk. After a few weeks back to work, I was rushed to the hospital on May 30th (from work, no less) with severe pain going up my leg & my thigh ! I had developed a blood clot/deep vein thrombosis (DVT) in my left leg. I was put on blood thinners (pill form & injections into my stomache) & moved to ICU, where I stayed for 6 days. I was sent home, with blood thinners (again, pill form and, now, do-it-yourself injections) as well as pain killers. The only way I was somewhat comfortable & having minimal pain was when I was lying down or sitting with my leg & foot elevated above heart level. Every time I put my foot down, I started to feel pressure building in my toes, then in my foot & calf. My foot turns red & purple each time. The pressure & pain becomes so bad when I stand/walk/or sit with my foot lowered for 5-10 minutes that I had to lie or sit down with my foot elevated above my head! Here it is, 6 months later, and it is still that way! I was diagnosed with Raynaud's syndrome in August, then found out that the clot damaged the valve in my popliteal vein (deep vein behind the left knee) which caused that pressure & pooling of blood in my foot & leg. There is no surgeon that will "touch" the vein because it is a deep vein and the only one in the leg that returns blood to the heart! In late October, I was also (FINALLY) diagnosed with CRPS. I was sent to a pain specialist who immediately put me on a regimine of medications (Lyrica for pain, Elavil, which is normally used for depression, but, according to the pain specialist, works with the Lyrica, and Hydrocodone, also for pain). I have had 3 sympathetic lumbar injections in 2 months, and have my 4th already scheduled for Dec. 6th and he's already talking about the implant. I go for physical therapy 3x/wk- I have been on crutches since May 8th, when I initially broke my ankle. 4 days ago (when I had my 3rd injection), the pain specialist told me to "throw away" the crutches and I have now graduated to a walker. I was a "wiz" on the crutches- with the walker, it takes me 4 times as long to get around, which is time I don't have before the pressure & pain get me "down" again. My husband, bless his heart, has been doing most of the cooking (I help, sitting down, with my foot elevated, as much as possible), cleaning,dishes, laundry, shopping-all of the things I took care of ON TOP of all of the things HE wants to get done! He's been out of work for 3 years (he's a union tradesman) now, and I am lucky that he is home to help me, but, I feel that, although I'm getting a little stronger, I'm going to be "like this" for the duration....he's been wonderful through everything and thinks of me first, always. It's a huge change from being the caretaker to being the one needing to be cared after....I feel lost & lonely most of the time, even though he's here. He understands I'm in pain and always asks what he can do to help, but, I can only tell him to just be here.
I just wanted to reach out to others like me and have someone who knows what I'm going through to share with.
My husband and I both lost our mothers withing the past 2 years (the two mothers were friends to eachother, and both were my very best friends) If I needed to talk about anything, I could talk to them! I miss them both daily, but, it's the bad days that I miss them the most- I know this group can't replace them, but, I'm hoping to make some new friends to share with.... I hope to hear from any or all of you-
Sorry such a long entry.... this is MY (true) story. I'm a great listener and I'd love to hear yours.
I know what you mean when you have to depend on someone to help you when your used to doing this for others/yourself. I had my other hip done in January. So this year has been very trying for me. I had to go into a wheelchair after the 2nd surgery because I wasn't strong enough to do the crutches. My husband has a broken vertebrae in his back. He goes in a gets a nerve cut that bothers him but eventually it grows back and he has to have it cut again. So I feel bad asking him to do things for me. And until the end of November, he's still working full time! Just having him take the day off of work to take me in for the lumbar blocks seems like an imposition sometimes.
I'm glad you're here. I'm not always online but I will certainly answer your posts within a day or so.
I'm sorry you have CRPS though, this isn't fun at all! Sorry too about the loss of your mothers. I have a very good friend who is 14 years older than me and I'm afraid things aren't going well for her right now. She's been bedridden for the last 3 weeks. I am afraid she is trying to make it through the holidays and then...She's in so much pain. It's hard to feel so helpless around those we love. I guess that is how your husband must feel.
I'll close for now but hope to get to know you better in the future.
Take care,
Deb
I too just joined the group recently, and have enjoyed talking to people that know what you really are going through . We look like there isn't a thing wrong with us but , all of us know we are all miserable with pain.
My husband too, has taken over running errands, cook and clean.Trust me we are both blessed to have such great husbands. But, there are certain things he is not allowed to do himself.. He had a dissected aorta from the top arch of his heart to the small intestine .So , we are both on disability. We do what we can , then have friends help. When I was dignosed with RSD I thought no big deal little did I know. I had worked in the ER a a RN for 13 yrs and never heard of RSD. Welcome to the group..
Thank you so much for replying to my post and for sharing a little of your own "stories". It means a lot to be able to be in touch with others who know what you're going through.
Deb, my heart goes out to you, and your ill friend. I know how it is to watch someone you care about ebb. Know that you are in my prayers and take comfort in knowing that we will all meet again one day.
BeachGirl, we ARE blessed to have such terrific husbands. Sorry to hear your husband suffers his own ailment, as well. I had back surgery in 2006 and was lucky not to suffer from nerve damage. I guess we all have our hurdles, don't we?
With the series of events my husband and I have endured the past 2 years, we have wondered how much more we can be tested....but, with a positive attitude (which, on the bad days, seems impossible) and the support of those we love and friends (even new ones), we can make it, one day at a time.
Today, the pain is constant, but bearable. The spasms are bad but have been few so far today, which I am thankful for. I have the greatest pain when I am done with my "at-home" exercises for physical therapy. The pain meds don't touch it much- I have one of those "bean bag socks" that you warm up in the microwave and use like a heating pad- I put that on and it helps that ache, at least.
I'm not online every day, but, I hope that we can keep in touch and help eachother. Thank you, again, for reaching out to ME. Be well, until next time.
Bobbi
Hope you all have a low pain day!
Deb
I've been around here for several years but only check in once in a while due to pain and med issues, for me the medications are almost as bad as the RSD/CRPS. Just had another one go crazy on me I'm in the first week of being off the darn stuff, Savella, so still some withdrawl issues I guess. But good things too, like having my eye sight clear up, I didn't realize just how blurry the med had made it until it was out of my system then I wanted to run around taking pictures of the crystal clear pretty world again! lol...may have wanted to but haven't been able to run in years!! nice to have the thought again though.
I too have a supportive husband for 27 years now, who had to take over when I got hurt from a fall 5 years ago Oct. 30th. I'm able to help some on a few days, as well as do some online business to help get more income but that tends to make me not want to hang around the computer after I'm done with the etsy and ebay stuff.
He sure was shocked to find out all I did as well as work full time, run our ebay business and take care of the kids, for the first few years I didn't drive or anything and he got to take the elementary and high schooler to needed attendances as well as get groceries, cook, clean etc... learned the hard way about all that I used to do. I'm able to help some now, but often he feels overwhelmed and behind all the time, which makes me try harder to get more done, and ask for less from him.
Oh by the way I'm 44 too. Interesting that all of us have similarities.
I'm sorry that you are going through this, but atleast you found a place where we all understand what your going through.
I tend to do long posts too so don't you worry about that!
Anyway, welcome to the group.
MM
PhotoJean, I am so very sorry for your loss. I pray that you are taking some comfort in the loving memories that the two of you shared. I, too, would feel lost without my husband and can't imagine it, but, if he weren't with me, I know that he would want me to press on in his absence & know that nothing is impossible if we have the will for it! Thank you, all of you, for your warm welcome to the group. It is nice to hear other people's stories & know that I am not alone in this fight.
Having a bad pain day, but, my spirit is still in high gear! Had PT today, too, and I had to grit & groul through it, but, I did every exercise & survived all of the massage & stimulator "hell",,,,most of all.....I'M STILL HERE! And, so are you...so, thanks.
I'm not on Facebook, so, this is the only "chat" that I have found that I am comfortable in, so far. I'm not online every day, but,I pray that we can all keep in touch & continue to support one another.
Prayers & hugs to all-
Bobbi