[amkxoxo]

So like I have said many times on this forum. I am beyond grateful that I do not have severe pain. But I still have this condition and it affects my life. Ever since it started affecting me I have been way more away of things I didn't notice before. Any little abnormal thing that happens with my body I try and figure out now and most times I consider it CRPS. I have had a bit of forgetfulness since I was injured. I am unsure if this is mere forgetting small things. It got to the point where many times in one week I will leave my home and get in my car and forget if I locked my house and I often walked all the way back to check. Once in a while I didn't lock it but mostly I did. It seems to happen a lot with little things like locking my house, car, and embarrassing enough flushing the toilet. I always have to go back and check, and it seems more than normal. This has been going on for about a year now. Some days I wake up and I just don't feel quite right. Its just I feel weak and tired. Not in pain, just sometimes I feel like I need extra rest. I have woken up from a decent night and felt like I haven't slept a bit. This isn't all the time now. I have a hard time sleeping at night. I am a night owl.

My problem is that my symptoms seem to change so much. Some times I feel great, sometime I feel like crap, some times I have this and not that and they are all random. I could go days or a week without burning and then it starts up randomely and happens everyday. My family doesn't understand. They make fun of my ailments. "your always dealing with something different" ....well Yeah. I think they don't believe me. I don't want to vocalize anymore because I feel like its just not serious to them and it is to me. I am so grateful to be as healthy as I am. I think they think I exaggerate. I don't know how to handle this.

[zookester]

Originally Posted by amkxoxo

So like I have said many times on this forum. I am beyond grateful that I do not have severe pain. But I still have this condition and it affects my life. Ever since it started affecting me I have been way more away of things I didn't notice before. Any little abnormal thing that happens with my body I try and figure out now and most times I consider it CRPS. I have had a bit of forgetfulness since I was injured. I am unsure if this is mere forgetting small things. It got to the point where many times in one week I will leave my home and get in my car and forget if I locked my house and I often walked all the way back to check. Once in a while I didn't lock it but mostly I did. It seems to happen a lot with little things like locking my house, car, and embarrassing enough flushing the toilet. I always have to go back and check, and it seems more than normal. This has been going on for about a year now. Some days I wake up and I just don't feel quite right. Its just I feel weak and tired. Not in pain, just sometimes I feel like I need extra rest. I have woken up from a decent night and felt like I haven't slept a bit. This isn't all the time now. I have a hard time sleeping at night. I am a night owl.

My problem is that my symptoms seem to change so much. Some times I feel great, sometime I feel like crap, some times I have this and not that and they are all random. I could go days or a week without burning and then it starts up randomely and happens everyday. My family doesn't understand. They make fun of my ailments. "your always dealing with something different" ....well Yeah. I think they don't believe me. I don't want to vocalize anymore because I feel like its just not serious to them and it is to me. I am so grateful to be as healthy as I am. I think they think I exaggerate. I don't know how to handle this.

I am sorry you are feeling this way, I think most of us have gone through this with friends, family and even strangers while we battle something 'unseen'. Sometimes it can be harder on us to deal with the emotional aspects of this condition that the physical pain, I wish there were easy answers but unfortunately there isn't. The only advice I can offer is to consider seeking out a pain psychologist who you can talk to without fear of insensitive comments. We all need someone to talk to but sadly most friends, family can't handle this kind of thing for the long run. If you talk with someone that has endured the battle of cancer they will likely share how in the beginning everyone rallied around but over time.. that dwindled. It is not that people don't care it is just that we are programmed to seek out positive things in life and so overtime they drift away or just simply don't want to hear it. That doesn't mean they don't love you or don't support you they just don't have the coping mechanism as this isn't their personal battle.

Did you know that it is very common after an injury to need additional sleep? It is also very common to experience that if you are anxious or under emotional for physical stress? It could even be that you might be anemic or have something entirely different going on (or yes, it could be CRPS) so it would seem logical to seek out your GP or even Gynecologist to rule out other causes for those symptoms. As I mentioned in another thread keeping a journal of all your symptoms and activities might help you and your doctors put all the pieces in the puzzle in order to determine just was is causing these symptoms. In the mean time you might want to look at what you are eating, what you are doing before bed that may keep you from sound sleep, write down your symptoms and then try not to focus on them afterwards, jot down when you are being forgetful and if that correlates to a lack of sleep from the night before. Watch an inspiring or uplifting movie or read/listen to a good book.

There are many websites that help families/marriages cope with chronic medical conditions as it takes a toll on them almost as much as us. It might be a good place to go to help you get through this difficult time. It might shed light on how you can communicate with those around you so that you can get the support you need.

We are here for you also.. this is a great place to get support as we have all been through similar situations.

Be strong,
Tessa

[AZ-Di]

Yes, like Tessa most of us HAVE dealt with these feelings and it is hard.
In the beginning I read about the isolation that kinda comes with this at
times & wondered "why?" Well, now I get it.
I've learned to just do what I can & be cheerful whenever possible because
I'm not looking for sympathy.
It's a very tough balance because people do get tired of hearing all the
weird symptoms we get. When I find a news story or treatment story about
RSD/CRPS I usually forward it to family (if it's pretty short). There are some
good ones on "youtube". I would not bombard them, but once in a while
it at least helps provide some validation.

[Lottie]

Originally Posted by zookester

I am sorry you are feeling this way, I think most of us have gone through this with friends, family and even strangers while we battle something 'unseen'. Sometimes it can be harder on us to deal with the emotional aspects of this condition that the physical pain, I wish there were easy answers but unfortunately there isn't. The only advice I can offer is to consider seeking out a pain psychologist who you can talk to without fear of insensitive comments. We all need someone to talk to but sadly most friends, family can't handle this kind of thing for the long run. If you talk with someone that has endured the battle of cancer they will likely share how in the beginning everyone rallied around but over time.. that dwindled. It is not that people don't care it is just that we are programmed to seek out positive things in life and so overtime they drift away or just simply don't want to hear it. That doesn't mean they don't love you or don't support you they just don't have the coping mechanism as this isn't their personal battle.

Did you know that it is very common after an injury to need additional sleep? It is also very common to experience that if you are anxious or under emotional for physical stress? It could even be that you might be anemic or have something entirely different going on (or yes, it could be CRPS) so it would seem logical to seek out your GP or even Gynecologist to rule out other causes for those symptoms. As I mentioned in another thread keeping a journal of all your symptoms and activities might help you and your doctors put all the pieces in the puzzle in order to determine just was is causing these symptoms. In the mean time you might want to look at what you are eating, what you are doing before bed that may keep you from sound sleep, write down your symptoms and then try not to focus on them afterwards, jot down when you are being forgetful and if that correlates to a lack of sleep from the night before. Watch an inspiring or uplifting movie or read/listen to a good book.

There are many websites that help families/marriages cope with chronic medical conditions as it takes a toll on them almost as much as us. It might be a good place to go to help you get through this difficult time. It might shed light on how you can communicate with those around you so that you can get the support you need.

We are here for you also.. this is a great place to get support as we have all been through similar situations.

Be strong,
Tessa

Beautifully said, Tessa!

[RSD ME]

I very rarely go out. I'm just in too much pain and too tired from lack of sleep because of pain. The rare times I do go out I seem run into people who say you look good. It's hard to believe you're sick when you're smiling like that. WOW. It makes my blood boil. They do not see the bed sores on my butt, behind my ears and on my scalp that bleed and take forever to heal from rsd. They do not see all the scars on my stomach from all the surgeries I've had do to my immune system going haywire due rsd. They do not see the broken, chipped and missing teeth in my mouth due to rsd. They do not see the clumps of my thinning hair I take off my brush every night due to rsd. They do not see my nails turning yellow and brittle due to rsd. They do not see my bones thinning in my hips to the point I can barely walk due to rsd. They do not see the twisted fingers and crooked non-functional wrist I have due to rsd. They do not see the all the pills I take to help deal with the constant pain and anxiety I suffer due to rsd. They do not see the constant nausea I feel from all the pills I take due to rsd. They do not see me curled up in a ball unable to move because of the electrifying, burning and stabbing pain I feel all over inside and out (until my meds start to kick in) due to rsd. They do not see the times that instead of smiling, I cry my eyes out from the pain of the spread I have due to rsd. They do not see me up half the night in pain due to rsd. They do not see wake up screaming from the nightmares of dying due to rsd. They do not see the rsd that has spread to my limbs and stomach which make it difficult for me to walk, to hold hands, to drive, to eat, to move and to breath. They do not see me in bed for a week, after the rare and short outings I take, because of the increased pain and exhaustion I feel due to rsd. All they see is me for a minute and assume because I look okay and am smiling that I'm okay. They assume because I cover my scars on my body with clothing and because I cover my scars emotionally with a smile that last a second that I'm okay. Well there wrong. I'm not okay. I take over twenty pills a day to barely be able to get out of bed, shower, eat something soft because my teeth are falling out, feed my dog and cat and then go back to bed. That is not being okay. I tell them this, but they just don't get it. My drs get it. My family gets it, but people on the outside looking in for a split second don't get and I doubt they ever will. It's just something I've learned to accept. I hope you can too someday. It's not fair, it's not right, but it's the way it is.
There is a heartwarming letter to family and friends on RSD HOPE that helps one person to explain to them how it feels to live with rsd. You may want to check it out.
I also ordered some pamphlets and a rsd wristband from RSD HOPE so when people question me about rsd, I just hand them a pamphlet. I figure it may not only opens their eyes to what rsd is but it also raises awareness of rsd, so maybe someday there will be a cure.
I wear the rsd wristband all the time so if I happen to get into an accident while my husband drives me somewhere, that the ER will be extra cautious with me because I have rsd. I figure that can't hurt either.

[eevo61]

Changes, we are all afraid to those,sudden changes rsd comes with.
Adding the stress to let people leave and really never get what we really dealing with is real painful,I will said,more,painful than rsd itself.
Recently ,I'm fighting the fight of my life ,no dr yet,getting sick and trusting my instinct to stay afloat and not to sink,sure is normal for all of us but is still new and changed so much .
Family is Important,before I will never said this but now ,I truly done give a dawn,focus on people who truly care and shows to care , many are just pretending and when the leave hurts so bad ,those crappy days are the ones that send us to flares,why waste our energy in something that never seems to worked at all,focus on who really never changed with you and love and treasure each moment with them,always keep the memories alive by trying to fight those awful feelings of defeat,we are not defeat,where is hope there is no defeat at all.
You find a place where being free is real,we can be free here and said what we feel and is valid but never in a moment of anger hurt anyone just because you have a crappy day,we all have crappy days and they will pass,let them pass and tomorrow will be a better and bright shiny day,wait for it.
Sorry all this happens at once ,but never let your boat sink without trying to fight first, rsd can't define us at all, we are warriors and warriors never give up.
Gentle and loving hugs ,keep the hope the fight with serenity and knowing we are here. With love ,Jesika .

[Supergirl123]

Originally Posted by amkxoxo

So like I have said many times on this forum. I am beyond grateful that I do not have severe pain. But I still have this condition and it affects my life. Ever since it started affecting me I have been way more away of things I didn't notice before. Any little abnormal thing that happens with my body I try and figure out now and most times I consider it CRPS. I have had a bit of forgetfulness since I was injured. I am unsure if this is mere forgetting small things. It got to the point where many times in one week I will leave my home and get in my car and forget if I locked my house and I often walked all the way back to check. Once in a while I didn't lock it but mostly I did. It seems to happen a lot with little things like locking my house, car, and embarrassing enough flushing the toilet. I always have to go back and check, and it seems more than normal. This has been going on for about a year now. Some days I wake up and I just don't feel quite right. Its just I feel weak and tired. Not in pain, just sometimes I feel like I need extra rest. I have woken up from a decent night and felt like I haven't slept a bit. This isn't all the time now. I have a hard time sleeping at night. I am a night owl.

My problem is that my symptoms seem to change so much. Some times I feel great, sometime I feel like crap, some times I have this and not that and they are all random. I could go days or a week without burning and then it starts up randomely and happens everyday. My family doesn't understand. They make fun of my ailments. "your always dealing with something different" ....well Yeah. I think they don't believe me. I don't want to vocalize anymore because I feel like its just not serious to them and it is to me. I am so grateful to be as healthy as I am. I think they think I exaggerate. I don't know how to handle this.

I unfortunately am in the same boat. My Mom just does not get it. I am not sure if she thinks I am faking my pain or what but she is hypercritical of me and constantly telling me to do things I can't do then my husband has to step in and say he will do it. I thank my lucky stars that my husband is so wonderful and supportive but I can't understand why my Mom just doesn't understand.