Reflex Sympathetic Dystrophy (RSD)

[dar in pa]

Hi Sam,

I hope you had a good night & are doing ok today. I finally got a few hours sleep last night and feel a little better right this moment. By 2 PM I will probably be done for. That seems to be time that I feel completely worn out and usually have to lay down for an hour or two.
I will talk to you later. Just wanted to make sure you are ok.

Darlene

[tazzwife]

Hi Darlene,
Thanks for checking up on me. I'm hanging in the pain pump has worn off and it will be Monday before I get another one. The one good thing about them is they do take the edge off the pain even though I'm not pain feel They don't give me any descent pain meds so It going to be a long couple of days. Oh Well it lets me know I'm alive. On the other hand it's all good here suns out and no cold or snow for the time being. I don't go out side yet. Still waiting on my chair as that I fall alot on my crutches and our porch isn't big enough for me just to walk out on. Hey that great you got some sleep. Seeing that sleep is rare. Have a great day and alittle relief ;}

Sam

Thought for the day - It's who you chose to have around you...............That defines who you are.

[dar in pa]

Hi Sam,

I'm glad you are ok. Hope the next couple days go fast so you can get your pain pump; hope this one works for you.

I haven't been going outside at all; as it is too snowy & icy. I just had a ramp built a month ago, but that also is covered with ice. It will be good to have it when the nice weather finally gets here. I am done using my crutches, as I am too unstable. I find that the walker gives me the best balance; I feel kind of embarassed, at 51 years old, to have to use it, but if anyone knew the reason, I'm sure they would understand. Oh well, I (we) do what we have to do.

I hope you can rest tonight. I just took an elavil and hope it gives me some half decent rest.

Talk to you tomorrow. God bless.

[tazzwife]

Hi Darlene,

I hear you on being unstable. I am very unstable on my crutches. If I don't fall once a week then it's been a good week. LOL. I wish I could use a walker but I can't even put any weight on my foot at all. You shouldn't be embarrassed at all using a walker. If it helps you, more power to you. No one knows what another person is going through. That's way I hate judging people. I have no clue what they're are going through and they are probably doing the very best they can, just as I am. We been having some nice days, But I only get to enjoy them with the door open. It's been a very strange winter for us as it been a really light one. I should knock on wood as that it's still only January. But am keep fingers crossed that it stay nice, and we see spring soon. and most of all summer. I hope you got some sleep and are having a good day.

Sam

[dar in pa]

Hi Sam,

Hope you are ok today. I had a better day yesterday than today; my legs & feet are terribly swollen and throbbing. I know what you mean about not being able to put weight on your leg. My left leg is shot; I can put a little weight on it and then I just drag the right one along; as this is the one that is now giving me the most pain.

You are lucky your winter has been lite. I live in Northeast PA & it has been terrible; we have had so much ice and cold. This morning I had 15 below (yes below) 0 and my water is froze. The pump is outside in a pump house and it has froze somewhere. My brother-in-law is trying to get it thawed. Spring & warm weather cannot come soon enough. It has been a tough three months since our winter weather moved in very early.

I hope the rest of your day is ok. Talk to you tomorrow.



Darlene

[sammy157]

Hi Darlene,
I hope this night finds you doing ok. So sorry to hear you have had such a hard time. One day at a time..if you can't seem to do that day..one minute at a time!! Hang in there as best you can, I will be sending Extra prayers for you:)
To answer you question, sorry for getting back to you so late, about the Lido infusions, they seem to work good for me for my RSD, and my fibro. I have had them one once a month since Nov., and so far--so good! I have developed this new problem with my knee, and now the pain is going up up my leg so bad!! I have an appt. with the DR. this coming week, and we shall see. My left knee is twice the size of my right. God only knows where we go from here. The pain is beyond any pain med.'s I have!!!! I just hope we can do something that doesn't involve surgery. I will keep you informed, as I hope you keep me informed also on how you are making out.
Hey, did I read right, (mussy brain) that you had a pain pump implanted? If so, how is it working for you? If you could, please let me know how it is working for you...thanks..
Have a better night, and a Great tomorrow!
Sammy157

[dar in pa]

Hi Sammy,

Thanks for your reply--so good to hear from you. When I finally get to the pain Dr. I will ask about the lido infusions. I think I told you I should have been at pain mangement 2 and 1/2 years ago, but since I lost my job, I did not have any health insurance. I just hope I have not advanced so far in the RSD that there is not anything that can be done for the pain.

You are right--I live minute to minute. Every minute is different; when I start to meltdown, I just pray to God to give me the strength to go on. This is a very, very difficult disorder to deal with. I don't think anyone ( except those of us that live with it) realizes what this RSD does to your WHOLE body.

I'm sorry to hear about your knee. I really hope you do not have to have surgery. If you do, make sure they know what they are doing, so you get the proper anesthesia, so as not to cause the spread of the RSD. My right leg is the one that is giving me alot of problem now; last night I had such bad muscles cramps in each leg, I actually woke up screaming. They are terrible. You are right, as I and most others have said, there are not any oral meds. that touch this pain--it is just ungodly. Do you feel like you are on fire and there are bugs crawling on your skin? I guess this is due to the nerves.

Thanks for the prayers and the same back to you.

Darlene

[sammy157]

Hi Darlene,
Thanks for the response. It is so nice to hear back from someone when you wright to them! I'm sorry, I did not remember you do not have a PM Dr., due to no med ins. Are you Disabled, or applied for it? That would at least give you some Med ins. That is all I have, but I do have to pay for the bal. which is not so bad as if I had no Ins. at all. I do need a secondary Ins., but can't afford it just being on SSD. I also have a house to pay for, and I guess you understand the rest!
With all your pain and this RSD, I don't know how you are dealing with it with out a PM DR. Who gives you your med.'s? Does your Prim. Dr. do that for you? Mine, wouldn't even go there!! What treatments do you receive to try to get this pain under control? Sorry, I don't mean to ask you so many question, and you don't have to answer if you don't want to..but I just am curious. I wish there was a fund or something for people with RDS. and no Med. Ins. You Need a PM Dr. With a Good PM Dr., there is hope to get you pain under some kinda control. I know it never goes away, but it sometimes can be controlled. There are many (not enough yet) treatments that can be done, as I learn more from this site and rsdandyou, to get some relief from this "Monster".We Need this Dystrophy to be known around the world!! We Need recognition..I have had my mind spinning about how to start something to get RDS known. Just like you, no Ins. and can't get the treatment needed!! Something Has to be Done.
(Can you tell I'm a bit angry about this situation!!) It gets me so angry that there is funding and support for just about everything under the sun, but RDS!! I have to stop, cause I'm getting upset! I will keep my mind going to come up with something..(I pray)
We are having snow today, and this winter weather really causes my pain level to go through the roof!! My Leg is Killing me from my knee.
I hope you have a minimal pain level day! Keep the Faith, and you sound like you have the positive out look to deal with this "Monster".
Be well, and my Prayers go up every day for you and all here.
Sammy157

[dar in pa]

Hi Sammy,

You are welcome for the response; if someone is kind enough to drop me a note, I want to respond.
Yes, I finally got on disability after a two year wait for the hearing and just recently was eligible for Medicare; and I do also have supplemental coverage. I wrote to someone else that I could not believe there was a 2-year wait from date of eligibility until you are eligible for Medicare. Of all times, when you are so sick you can't work and need to go on disability, isn't that when you REALLY NEED health insurance. I think a drastic change needs to be made here. My family dr. gives me prescriptions for my percocet and of course, I need xanax to keep myself under control. In addition, I have problems with my thyroid and that does not help. I take elavil at night to help me sleep.

I understand your anger about the whole situation. I, too, wish there would be more research done on RSD to get us "sufferers" more relief. We do need recognition and for this MONSTER to be known for what it does to the WHOLE BODY. Most people still have not ever heard of it. When you say you have RSD, they look at you like you are an alien. Even my sister, who is in the medical profession, just recently, after all the years I have had it, did some research, and apologized to me for her ignorance in not having any idea what I have been dealing with. I do not want sympathy, but for people to understand "we are not kidding". If you said you had cancer, or MS they would say "oh that is terrible- I'm sorry to hear that). And, yet from what I read, the pain of RSD is much worse than even cancer and, I know first hand that it is a crippler just like MS or MD. If I didn't live this, maybe I wouldn't believe it either; I try to think that when I want to get mad at someone for not understanding. I would give anything to go back to my old life when I worked full time, loved to go shopping and had somewhat of a social life. Noone can understand when they ask you if you want to go somewhere on such and such a date. I tell them I can't plan tomorrow let alone in the future, as I don't what that day will bring. I may not even be able to get out of bed. I was always a hyper, go, go, go person but this has really stopped that and I hate it.

This snowy, cold weather is killing me also. Last August I actually got to Church for 4 Sundays, but as soon as fall and then the cold weather set it, I feel that my body paralyzed; as I can barely move. My hope and pray now is that when spring and warmer weather gets here, I am me able to get around a bit better.

I'm sorry if I have ranted on too much; when I get going about this whole mess, sometimes I can't stop. I hope you also have a minimal pain day and prayers to you also.

Darlene

[sammy157]

Hi Darlene,
I just can't believe how much we have in common..I was always on the GO_GO_GO also, and as far as shopping!! I would shop till I dropped haha..truth! Now I am lucky I have the net, but my time has been limited due to the pain! To funny about Church, as I have my Granddaughter today, and we planed to go Today, only to wake up to at least 4 inches of Snow, so far, as it is still coming down!!
Don't worry about ranting and raving, as I just did it to you,,:) We must get it out! Thank God for this site..but today I want to wright so much, but everything hurts!! We have to chat on rsdandyou sometime. That is amazing about your sister! Glad she understands now huh!
Let me know when a good time would be for you to chat..k..I know I can't give you my email on here, I'll try, but i think they block it..my yahoo im is amw12571.
if this does not go through, drop me a line as to when we can meet on rsdandyou chat..k
Sounds like we have a lot to chat about! Thanks for the prayers, as all are very welcomed!!
Be well, and hope to hear from you soon.
Sammy157