Reflex Sympathetic Dystrophy (RSD)

[livingwith]

Hello my name is Sam, I’m very new to all of this. I have lived with chronic pain most my life as that I’ve had numerous surgery and things. I recently had surgery to remove a tumor in my right ankle and scope it out. It was worse then the had thought and I will be dam if I didn’t get RSD. Not like I had enough to deal with in my life.
I am newly married have 3 teenage step-sons I think of my own, a handicap daughter and 3 new grand babies. I lived the run of the mill l...Read the full article

[dar in pa]

Hi Sam,

My name is Darlene. I am 51 years old. I am sorry that you are also a sufferer of RSD. I have had it over 20 years, with the first five and last five being the very worst. I have it from my waist down, particularly in my legs and feet. I graduated from one cane to two canes and now to a walker--isn't that great? I am afraid a wheelchair is around the corner, but I am trying to use my legs as much as possible. My feet and the calves of my legs burn,(of course, I also have peripheral neuropathy) but the upper parts of my legs feel like they are paralyzed.

I was told about 2 months ago that I have avascular necrosis and need boths hips replaced. Of course, when I heard "surgery" I went into panic mode. As I have read, surgery can cause a spread of the RSD. I don't know what I am going to do.

I know the helpless feeling you have. I went from a VERY independent person, working full time to someone who has to ask for help and I HATE it. It is very hard to function when you feel so bad. I do the best I can, and ask God every day for the strength to get me through. I try to Keep the Faith and know that I will be ok.

If you just need to talk, feel free to respond to my post.

Just try to hang in there and take care of yourself.

dar in pa

[tazzwife]

Hi Darline,

It was really nice to hear from you. And that you have this in your legs too. Yeah Ive been on crutches but going to a wheelchair. I haven't ever been able to use my right leg since surgery. Bless you heart for having to talk the big step again. Yes I would love to chat with you.

Thank you
Sam

[dar in pa]

Hi Sam,

Thanks for your reply--it is nice to hear from you. I notice the time you replied; can't you sleep either? I have answered some posts at 2 or 3 in the morning. Do you find the pain really intensifies at night?

Yes, my left leg was the first to go and the right one is on its way now. I just can't believe this RSD--if you didn't live it, you would never believe it. My sister is in the medical profession and, she can't even believe it.

I wish you the best and hope you can find something for relief of the pain--if you do, please let me know. I do take percocet, but I've found, as have many others, that pain meds really don't touch it. I think sometimes it is mind over matter. "oh, I took that pill, maybe it will help."

My prayers go out to you and to all who suffer from this debilitating disorder. Drop me a note anytime you need to. It really helps to just chat with others who know what we are living with.

Darlene

[tazzwife]

Hi Darlene,

Yes I am up and down most nights. So do we have mood swings and can we not cope with every day life?? Ive been told there's not pain relief out there. I on number 5 of the nerve blocks don't know if you have tired those. They are not much better but the first 3 -4 day your numb. But like you it has moved up my leg. It's into my hip so and that's above my block so it doesn't help much. Mind over matter hummm??? I hear ya - I took a pain pill now shouldn't it work????? Now thats funny. I'm trying to keep what little of a sense of humor I have. Hubby doesn't think I have any left. I do have to agree not sure some days who I am anymore. Sorry I sound like I'm ranting It nice to be able to talk to someone who understands and maybe I can get some advice from.

Sam
You can email me anytime

[dar in pa]

Hi Sam,

Hope you are ok. Thanks again for the reply. Don't feel like you are ranting; we just need to talk. The pain is so unbearable, I think we need to talk about it. People probably get tired of hearing about it, but they just don't understand. What I would give to wake up some morning and find this had all been a nightmare and I am back to my old self again. I know I shouldn't let the pain take my life away, but it has.

I can't give you too much advice, as I don't know what to say. The last few years have been horrific, and when I lost my job, I, of course, lost my health insurance. Therefore, I could not get the care I needed; i.e. nerve blocks etc. I have just dealt with it on my own. I try to face each day with strength and go on--however, we know that is easier said than done. When I was finally eligible for medicare, too much time had gone by for any treatment that could help. Treatment must be done ASAP, which is where alot of people have the problem. They are not properly diagnosed for so long, that too much damage has been done before they get the treatment.

This forum has saved my life. I just got my computer at Christmas time, and reading and posting has helped me understand that I am not alone. When people ask you what is wrong and you say RSD, they look at like you are an alien, as they have never heard of it. I wish I hadn't either.

Talk to you later. Spring is slowly getting here, and I pray I will feel a little better when this cold, wintry weather is over. The cold really does make me alot worse.

Know I understand and I wish you the best.

Darlene

[tazzwife]

I have to thank you for replying it is very nice to be to talk to someone that understands and knows what I'm talking about. My poor husband is trying so hard, but I think I'm driving him crazy. Yes I'm feeling better. Wow, didn't know I was so upset or was holding so much in. Your are right though. I do hate to tell anyone I hurt as that it make me feel like I'm whining or something. Some days I start out pretty good then by night it really bad ARRRRHHHHH. I beginning to hate the night. then other days it's just crappy all the way around. They started me early in treatment I just don't seem to respond well. I guess I'm expecting to much. I always thought I had a high tolerance for pain. This is proving me wrong. I hear you on the long cold winters, we have them here. I'm so ready for summer. I feel like a hermit. Don't worry about not having any advice. It funny just talking back and forth has done me a world of good. I do have a few personal questions or want to talk on a different level. You really don't have to answer if its to personal. Ok hear it goes. Hubby feel that I am having bad mood swings, I'm starting to see what he's talking about. Man how do you stop them and am I really losing it??? What about family support? I feel like I'm burning my family out. That is the last thing they need. As that I need so much help. Like I was telling you I'm on crutches have been for 3 months and doesn't look good for me to ever be off them. I'm always asking for help and when I try to do things myself I fall quite a bit or just plain can't do it. Adjusting to all of this has taken a toll on everyone. As I read the stories I see it does on everyone. But I want to help my family and I don't want 2 be a burden and cause more stress. I lost my job do to this yuck. So there's enough stress without me adding to it. I want to thank you for listening. I hope you have a good day
Sam

[dar in pa]

Hi,
I hope you are ok. I was really hoping that since you were newly diagnosed, that the nerve blocks might be helping you.

You talk about bad mood swings--you are not alone. I do live alone and it is probably a good thing on some levels. Some days I don't want anyone even near me--if they would brush against me or touch my feet, I would go into orbit. I have cats--they keep me going; but on the bad days, it seems like I am even screaming at them. They usually don't upset me like that. It all depends on the pain level that day.

Family support is hard, as so many just have no idea what you are living with and the intensity of the pain, along with the vascular and temperate changes in the body. I know at times I am carrying a fever as I just shake and literally tremble. Then, I usually take a xanax and lay down on the heating pad and just cover myself with blankets. I don't like asking for help;I have a sister and until very recently I think she had no idea what I have been living with. She acutally told me the other day she has been researching RSD and did not realize what a bad, debilitating disorder it is. I was just so happy to hear her say that; as I have always lived with alot of depression, and she related the pain to coming from that. Chronic pain is so hard to explain to anyone--unless you live it, no one knows. I really miss my mother (she died 3 and1/2 years ago. Not only was she my mother but she was my best friend). She suffered from RA for many years and knew all about chronic pain. I just wish so much she were here with me so we could just talk. I have one very good friend that I have known for about 35 years. I talk to her alot and she helps to keep me going. She helps me with groceries and things that I need.

I hate asking for help, even if it just getting groceries. I was always so independent doing for myself and helping others if they needed it. As you say, I feel like a burden; I have even told my sister that I am going to live in an assisted home. They just don't understand how just doing everyday things is such a struggle. I don't know about you, but I can't hardly even get my sweatpants on. I cannot lift either leg and just kind of throw the pants on the floor and try to get my legs into them. Sometimes just by the time I get dressed, I am already a nervous wreck, and I have only been up for about 10 minutes.

I hope this helps with some of your questions. I enjoy posting to you; it helps to know that others understand. Feel free to ask me anything you want.

Darlene

[tazzwife]

I am so sorry to hear about your mother. I to lost my best friend that was dad also, 10 years ago. It's pretty painful to think about on the bad days. He had chronic pain also do to being shot down in Vietnam war. Your email are so wonderful to read it great to know that I am not alone and someone can understand. I'm so sorry hear to how bad you are feeling, And that you struggle so much. It's only in my right leg but man is it moving up fast into my knee and hip. I wear sweats or pj bottoms every day. To keep my humor I have a girlfriend that is into the cartoon Maxine. So she send them to me once in a while. I thought of a new funny that she would say. "Its a good day when I put my bra on". Hahaha
I have an appointment the 23rd to the pain clinic. I'm hoping it help as the doctors don't know how to help me and only 1 out of 5 nerve blocks have work and going in for number 6 this morning. My husband really is trying hard to understand and cope with all of this. Bless his heart. My Mom is kinda learning she talks a little more to me, but we really have never gotten along. I think that no one really knows how to deal with. The one's that do try to understand god bless them for trying. I can't deal with the one that just blow us off and don't even try or care. I really hope you have a good day.
I read this the other day and thought it was sweet. Here's a pain free hug :)

Sam

[dar in pa]

Hi,

You certainly are not alone with this. What bothers me is that there are so many people with RSD; yet so many drs. either have not heard of it, or do not know what to do for you. It is very frustrating going from dr. to dr. and still getting no relief from the pain. I hope your next nerve block gives you some kind of relief. I have 2 dr. appointments today; they really are worthless--the only thing that will come out of them is prescriptions to try to get me through another month. I will be glad when they are over and I am back on the couch. Moving feels good, but it is overwhelming and exhausting just trying to move.

Yes, I really do miss my mother. Especially on the days when I just sit here and cry because I am so depressed with pain; I just want to feel better. You say you and your mother have never really got along; my mother & I were just the opposite. My father died when I was just 12 years old; I had always been a mama's baby, but that just drew me ever closer to her. My mother died from lung cancer in July 2005. I thought I would never make it without her; but her it is three and 1/2 years later & I am still here. I keep my Faith in God and ask him for strength every day to get me through.

A pain free hug to you also.

Darlene