hubby doesnt understand
 

i' afraid my hubby will leave me, i try to say ty for everything i love him dearly but he doesnt understand the pain, he thinks i'm laying and sitting too much, says he wont let pain ruin his life, i know he loves me, but he's started rolling his eyes at me and clearly not happy with this, all i can do is cry for fear today, anyone else here wiyh this problem? i try not to be negative and cant go out and about like he does.

lolo217, I'm a husband of a wife whose had RSD for 10 years. If he's rolling his eyes it may be because he does not understand the severity of this disease. How long have you two been dealing with this? Has he looked really deep into this condition? If he would like to talk to a spouse of one who has RSD pm me. It really saddens me to hear of love ones who drift, that includes friends, spouses and blood relatives.

Hi Lolo
 

Welcome to Neuro Talk. You found a site that will listen. I have RSD or PN too, so I do understand the pain. Your husband needs some education about this. This is nothing faked, or something anyone would want to have in their lives. Compassion sometimes only happens when one gets sick themselves. We all do at some point have a medical issue. If you can take your husband with you to the doctor and let the doctor explain this to him, perhaps that will open his heart a bit. We need support in this, from our mates, and our friends. I will keep you in my thoughts and prayers. ginnie

Hi lolo! I am so sorry that you are dealing with this and that your husband doesn't get it. Like most non-RSD sufferers, he probably just doesn't understand it. If you haven't already done it, I think it would be a good idea for you to provide him with some information about RSD. I would also show him the McGill Pain Index (google it) - it has helped some of my family members understand the severity of the pain a little better. As my husband says, it really puts the pain levels in perspective.

I have had RSD for about 21 years now. I have been married 13 years and am so much worse off with it now than when I got married. Luckily my husband is more understanding, but some family and friends were not. Educating them helps. It is easy for someone not suffering from RSD to say that they wouldn't let the pain ruin their lives, they obviously do not get it and they need to be educated!

I wish you the best of luck with this.
Nanc
:hug:

severe rsd (complex regional pain syn)
 

It will continue to be an issue. My husband has seen what happens when I have an episode. The only thing I can suggest is that you may have more than just this. Have your Ivig's done. In the meantime, you should go to a therapist that specializes in Pain patients. Honestly, your pain is real and he is adding stress..........not good for you to keep it in.

have him read this

Please read my life with RSD/CRPS

These are the things that I would like you to understand about me before you judge me.

Please understand
that being sick doesn't mean I'm not still a human being
I don't feel well often times and I might not seem like great company, but I'm still
me stuck inside this body.
I still worry about my kids and work and my family and friends, and I'd like to hear you talk about yours too.
Sometimes I want to talk about my illness sometimes I don't, so please don't roll your eyes when I talk about my pain and please don't pressure me to "get it off my chest" when I just want to pretend it doesn't exist.


Please Understand
the difference between "happy" and "healthy".
When you've got the flu you probably feel miserable with it, but I've been sick for years.
I can't be miserable all the time, in fact I work hard at not being miserable.
So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired I may be in pain. I may be sicker than ever.
Please, don't say, "Oh, you're sounding better!" as if I'm healed. I am not sounding better, I am sounding happy. Tomorrow I may sound worse again.



Please understand
that being able to function for an hour doesn't necessarily mean that I can keep it up all day. Doing everyday things, that everyone else takes for granted, exhausts my resources and I need to recover.
Imagine an athlete after a race. They couldn't repeat that feat right away either.
With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing. Maybe today, I can handle work and home, tomorrow it may be one or the other but not both. There is actually a name for this it's called postactivity payback and it sucks.
So, please try to keep in mind that I don't function like everyone else and just because I can do it today doesn't mean I can do it everyday.



Please remember
that the above paragraph can apply to just about anything, "sitting up", "walking", "thinking", "being sociable", and so on it can apply to everything that requires physical or mental effort. That's what a chronic pain illness does to you.


Please understand
that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen.
Please don't attack me when I'm ill by saying, "But you did it before!".
If you want me to do something, ask if I can and I'll tell you.
In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.



Please understand
that "getting out and doing things" does not make me feel better, and
can often make me seriously worse.
Reflex Sympathetic Dystrophy may cause secondary depression (wouldn't you get depressed if you were always in pain and exhausted?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.



Please understand
that if I say I have to sit down/lie down take these pills now, that I do have to do it right now, it can't be put off or forgotten just because I'm doing something. RSD/CRPS does not forgive.



Please understand
that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well, But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better.
It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness. I will go about the business of living, but I won't necessarily be happy about it either so please try to understand that there is a reason I'm a little crabby sometimes. I can't just hide in bed with my head under the covers because I don't feel good everyday. But I sure have tried to do just that.



Please If
you want to, you can suggest a cure to me, but please don't act as if
it's going to be my salvation. It's not that I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest something at one point or another. Typically, it's just the same old snake oil in a new package.
If there was something that cured, or even helped, people with RSD/CRPS then we'd already know about it.
There is worldwide networking (both on and off the Internet) between people with RSD/CRPS, if something worked we would KNOW.
I'm happy to hear what you have to offer and if it's something that I haven't heard before, I'll take what you said and discuss it with my doctor.

Please understand
that getting relief from an illness like this can be very slow if not imposable.
People with RSD/CRPS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.



Please understand
that if I pull away from a touch or a hug. Its does not mean that I am anti-social. Or that I don't like you. It simply means that my body's ability to enjoy touch has changed and I am unable to greet people in a normal mater because of the chronic burning pain that RSD/CRPS causes.


I depend on you - people who are not sick for many things. But most importantly, I need you to understand me.


THANK YOU!

Is this something you wrote personally? It seems familiar. If it's something from another website please link to avoid copyright issues.

No I found it on the internet somewhere. said to use freely so i have posted it on some forums where people have had this sort of problem and I have had my family read it.

hubby doesnt understand
 

hello jimking ! ty for responding, i appreciate it alot. i was diagnosed about a month now, i still have the broken wrist too, guarding it like crazy, as there is no cast, bones didnt heal together, so surgery cant come soon enough. i will show him your letter, maybe he will get it, it hurts my heart that he sits on his pc and does not even look it up, hopefully he'll come around? i dont know what or whered i be without him. again ty and say a warm hello to the mrs from me, you're a wonderful husband jimking, where is her rsd, how did it happen? id pm you but havent figured it all yet? ty again very much, kind words go a long way:)

She broke her right wrist back in 2002 from a trip and fall. We were out of state at the time visiting family when it happened. She had her wrist temporarily set until we came home for her doctor to look at and treat. It turned out the set was not correct so she had the rebroke and reset.
To make a long story short my wife did not tell me about her RSD for two years although I knew something wasn't right. She's a private person so I didn't ask questions until she told me. Her fear was that I'd leave her because of it. I will say at the beginning I buried my head in the sand, not at all happy in what I was reading about RSD. Then she could no longer deal with uncaring doctors and work. She worked an additional 4 years before she called it quits. From there she really needed my help.

One month is not alot of time to learn to deal with this condition. However, It is in the early stage of this disease when you really want to aggressively treat this! My wife did not have that opportunity because she was misdiagnosed for two years. I strongly urge the both of you to manage stress very carefully because I have a strong belief that stress can cause as much pain in the long run than the broken bone itself. Your husband will have to learn not to transfer his stress onto you, and that is not easy because it took sometime for me to realize that I was putting stress onto my wife and not knowing it. Anyway I can ramble on and on but am currently at work. Don't hesitate to PM me.

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

ugh
wow! this sounds all too familiar omg, we lived in mn decided we couldnt take the long winters, got rid of our beautiful house, bought a 5th wheel and headed south, i regret only that i had a great dr. and tripping in my flipflops. so right now were stuck in missoui, i call it misery state. does yor wife still suffer with this and if i may ask what she does to deal with it? what state are you in? i cant believe they didnt diagnose it right away! im thinking of contacing a rsd attorney. goodnight for now. ty.

lolo217, it is quite common for RSD to be misdiagnosed or doctors knowing what it is and dismissing the patient without ever mentioning it to them. It's a can of worms many lazy doctors do not want to deal with. My wife's journey with doctors is long. Treatment at some of the best hospitals netted nothing. Even a world renowned facility turned into a nightmare. She is now on SSDI and medicare.

Most doctors seem not except medicare and those that do seem to be the bottom of the barrel. She has often been treated as a drug seeker. I've seen it first hand because I go to all her appointments as her advocate. Overall her treatment in the US dealing with RSD, from 1-10 I'd give her treatment a 5. She no longer visits doctors, she is no longer taking narcotics because she is tired of being humiliated, but that is her way of dealing with a bad situation, not everyone would do this and shouldn't. My wife does not hold doctors up on a pedistal and never did, even before her RSD. She's very shy and feels great guilt because of what it has done to her and others around her. So, she has little tolerance of doctors who roll their eyes at her.

She is in pain daily without fail, but she says the narcotics did nothing for her pain so who needs them. She moves around, cooks, garden, cleans the house if she can, it may take a month but she manages while I'm working. But I will say in her early days of RSD those pain meds were very important, no doubt about it. The pain in those days was driving her crazy and I'm not kidding one bit. Over time she seems to be able to control and or tolerate the pain better by lowering her stress level, diet and moving about as much as she can and avoiding situations that can trigger flares. Her energy level is low, she can only walk about a block or two and that is about it. She is not overweight, she looks much younger than her 54 years, and sweats constantly. Heat hurts her, the weather hurts her, coffee she loves! :confused::)

We live in Virginia just outside of Washington DC. I hope everything works out for the better lolo217, don't let RSD control you, control it.

lolo217, I'm sorry you have this monster disease! I can empathize with you, and with Jimking's wife. My hubby (and everyone I know) has a hard time understanding the pain and the exhaustion it causes. My hubby is a "fixer" and I know he hates that he can't fix this or take it away. I try to reassure him that I really don't wast him to fully understand because to truly understand you have to feel it for yourself...and I wouldn't wish this on my worst enemy.

I'm with Jimking's wife...I hate doctors. I always have, but even more so after a doctor literally screwed up my wrist/hand when he put the screw in the scaphoid bone wrong...which was the trauma that most likely caused the RSD. I took pain meds the first couple of years since I had to have three more surgeries (by a hand specialist) trying to salvage as much use as possible. I've never been big on medicine because most doesn't work for me, but I do believe you should take it if it helps and you don't have a high enough pain tolerance to function without it.

Back to your hubby... If he says he loves you, you have to try to not only believe it, but cherish it and him. He doesn't want you to hurt. He probably hates that he can't help you feel better. And he most likely can't stand to hear that is more likely to get worse than better. I'm preaching at myself here...but think about how you would feel if the roles were reversed and he were the one in this kind of pain constantly. :Bawling: I hate to even think about it!! I'll keep you both in my prayers.

hello litlove, sorry its taken sometime to get back to you. i am looking for rsd friends! hear their stories and maybe share a laugh, if thats possible! i never heard of rsd and am finding nobody i know, knows nothing and even drs. im sure u know this already. may i ask where ur from and where your rsd is? was it from breaking a bone? best wishes, hope to hear from you! :)