Hi lolo.... I have dealt with this beast since 2009 and it keeps getting worse for me.. my wife and kids have seen its effects on me in a sudden flare. but i try like crazy to hide my true terror and pain. All that because eah day brings on new reactions despite the actual understanding of the beast they do not understand that this beast is one unrelenting , and two unpredictable.
one day i cld be at a pain level of about 7 and try to do many things at once so much so I accomplish a great deal in a short amount of time then other days i am at 9 .. a little slow and cautious as one turn can push you over the edge. then other days im at a ten and I would rather keep my feet up and lay down. but even further than that.. as many here will understand this when i say some times it is 10 to second or third or more power as each affected area is another entity and a cause for that much more suffering. doctors .even the best ones do not yet grasp this.. how can someone who cannot feel this understand it. Its so much to handle , just think about yourself months ago.. before you knew RSD/CRPS existed. if some one said I live in pain but it is invisible how would you react.,, So hard for me.. but recently I tried it out.. and I was no better than that,(sorry to say) we need to educate the world. and our loved ones best we can and then stand back and PRAY that they understand a little.. JIMKING.. wonderful and rare to stay and read these stories and learn and apply it to his relationship.. truly an inspiration to see this dedication he has put forth . as a couple people here have seen but on whole we as the sufferers are also burdened with the job of educating the masses. is this our lot in life as written by higher powers.. I dont know but it is ours.. so coming here is the best (first) step. welcome to this site and to our family ask your spouse to join you on this site for just one night and see what changes in him... I look forward to seeing his responses.. until them be well and remember you are now part of a larger family...

Im sorry that your husband is not understanding. I can relate to that with some of my family members. Maybe stated but have you looked into therapy for both of you? Have you also looked into support groups? I know that pain or health problems impact our loved ones as well and for both involved learning to cope,respond,and live the best way in a bad situation is important.

ginniey ty for responding, he takes me to drs but leaves to go to starbucks, this really hurts my feelings so threrfor im left with all theses feeligs of geuncertainty, he says he loves me all the time, so i dont know what else to say, he says after surgery i will be better, after surgery comes anouther cast! which makes me uneasy becuz this is how it all started ya know. so tell me your story, how are you?

ty nanc i appreciate your thoughts and ty for the info on the mcgill pain index, i was feeling pretty lowly that day, we have been together 12 yrs now and hes always been great, he says ill get better, well not from what im reading! hopefully he will come around and start reading up on it. where is your rsd?

ty nanc i appreciate your thoughts and ty for the info on the mcgill pain index, i was feeling pretty lowly that day, we have been together 12 yrs now and hes always been great, he says ill get better, well not from what im reading! hopefully he will come around and start reading up on it. where is your rsd?

ty annie for responding, u say an episode? what do u mean? this is all so new to me, ive never before knew this syndrone exsisted, i feel so sorry for everyone! my pain is constant but maybe its becuz that i need surgery desperatly, but evertything takes time right? the hurry and up wait game. anyhow, please tell me how u got rsd?

Hi lolo, I completely understand where you are coming from, I have many days like that too. The great thing is that you can find so much support and understanding here when you can't find it at home.

I have RSD in the right side of my face, both hands, left arm, left leg and right foot. It is possibly spreading to my other foot and internally, dr still unsure about it.

I think, since your husband has been pretty great, maybe some additinal education about RSD would help him. If you are treated early enough, and treated effectively, your chance of remission is greater. Can't remember if you said how long you've had it. I was in remission for a long time but the injury that brought it back was diagnosed way too late for treatments to help me.

Any time you need to vent or talk, pm me.

Take care!
Nanc
:hug:

the hurry up and wait game ..ohh the fun.. you are not alone. we all know that well enough.. I nticed a question on episode.. this for alot of us some times gets worse in bursts.. so these are called flares or episodes.. you I believe I read it right" are new to RSD all together and this was due to a "recent" injury
this is a decent position as some of the best results happen from early detection and treatment.. capitalise on this and ask questions to your doctors galore. and try to keep that head up as stress has a negative impact on RSD.
also this is new to your husband too so he maybe a little callouse because he doesnt understand the deapth of this disease,.. have you asked him why he is seemingly distant.. or made mention that this is how you feel??
Its a difficult thing to do I know. also . I know its early in but have you seen a pain psychiatrist, if not consider it. some of the treatments might demand it might as well start early with it.
I am sorry you have to go through this but as Im sure you have seen this group of people accept you easily into this family. best of luck. soft hugs and warm wishes

Hi Lolo
 

Next time your husband says he loves you, direct him into the doctors office with you, smile real big, and say..."lets both of us get a treat at star bucks after this ok? Remind him of his vows if you have to. He owes you to be supportive, and I would take just so much, and I would act accordingly. I have no time in my life for those who show indifference, say one thing and do another. The measure of a person is in their actions, not in words. remind him of that too. I would like to talk to him myself after hearing your pain, hum.....

I started with anterior tibial tendon disfunction. found out after just about loosing my ability to walk, I don't have that, doesn't exist. Had an orthopedic surgeon come in, and said I have three torn ligaments in my left ankle that colapsed my foot. Bad part is the PN or RSD won't let me get it corrected. Had two sugeries to remove ganglion cysts, and this sparked the RSD. Can't make it worse. It is Lousy as you know. So I limp and take as few medications as possible. I got a good lotion for the RSD that really really helps with the burn. Can post the ingredients if you want. Not covered by insurance, made by company who does compounds.

This is one of several little problems, like all of us have, one after the other.Have another endoscopy coming up the 24th. Have a nasty little condition there. Two spinal fusions, and a partridge in a pear tree.
It's almost funny if it didn't hurt so bad.

I do care about you, and what we all go through here. I run back to this site for comfort and caring individuals, which make every day a bit better. The closer I get to my endoscopy, I will become a real pest. Have a good day today, with less pain, and know that you are thought about. I pray every day for the people on this site, as often as I think of your names. ginnie:hug:

There is an excellent book called "Living with RSD" that I highly recommend to my Support Group not only for the patient but for Spouses etc. Give it a try-Carol