Emotional changes?
 

My significant other (of 16 years) was diagnosed with RSD about 6 years ago. He was going to the doctor's for about 4 years immediately following his diagnosis and was on meds. About 2 years ago, he decided that he did not want to be on meds any longer and stopped taking them (all of them). He has not been been to see his doctor since then either. Lately, he seems to be getting worse. He is in pain a lot more and he is so mean. I have never seen him like this. He used to treat me like gold and now I walk on eggshells around him, which is NOT me at all. I am trying to be supportive, but I don't know what to do. Are emotional changes normal with RSD, especially if he is not getting any help? Is there anything I can do, short of dragging him to his doctor's office? I don't know where to turn and I don't want to give up on 16 years. Any advice is appreciated! Thank you.

Steelgirl,
Yes RSD does affect emotional states.
I've started many fights with my wife. For no reason! I've learned to control my anger better but I can feel inside I have far less tolerance and fly off the handle easily. My wife just the other day was telling me how she feels like she has to walk on eggshells.
That happened mostly during my flare ups or when I forgot to take my meds. Now she always asking me if I took them (lol). I also keep my sense of humor.
Your hubby sounds like maybe his RSD is rearing its' ugly head again and he shouldn't keep away from help. Most people I know of when a having a re-bout after a period of remission it hits harder than the first time.
I don't like the idea of taking meds the rest of my life or having RSD for that matter. But like one doctor told me "is it what it is".
Hope my little bit of rambling helps...

jimbo,
you nailed it. Usually I am very quite when the pain is to much, but when someone says something and my pain is out of control, I really try and watch what I say. I wasn't like that earlier in the disease. I use to just fly off the handle, esp. if I missed a med.
Steel, if he refuses to go to the dr. you may ask him what he wants to do about pain control. Some people try homeopathic remedies. Unfortunately, you can't make him do anything.

Yep...emotional rollercoaster and sometimes that leads to snappishness. Pain can do that.

But I understand his feeling about not wanting to take meds. I recently went off all of mine and am going back on one at a time because I was having bad side effects. I don't like the idea of being on meds every day for the rest of my life...but then again I need to be able to function so it's really a balancing act.

Maybe what you and he could look into are some other methods of pain control and work on finding things that make him feel better (ie alternatives to medications). I have a TENS unit and it helps tremendously, as do heating pads, and physical therapy. Does he have any type of exercise routine or anything that he does proactively for the RSD? Other things to look at would be adjusting his diet. There's a list of foods that are good/bad for people with RSD that might help.

But in addition to finding those other things that help with the pain and function...it's also important to make sure that he finds things that he can do that bring him joy. I certainly CAN'T do a lot of the things that I used to...but I make sure to find time for the little things that I CAN do.

And I know this isn't necessarily the same for everyone...but for me one of the things that keeps me strong is my boyfriend and the fact that he treats me NORMAL. Our days don't revolve around what is wrong with me but instead he just acts like nothing is wrong with me. He does the little things to help me out, never asks or expects me to do things that I can't, and is supportive of whatever new things I am trying...but he doesn't treat me like I am broken and that makes me feel better...stronger. Every relationship is different and every person may need something different from a partner...but for me the sense of normal is important.

So even though you can't force him to go to the doctor...you can be supportive and help him with whatever he needs from you. Be understanding when he has bad moods...but don't be afraid to give him a piece of your mind too. Don't take what he says to heart in a bad mood...but don't let him get away with it either. Sometimes I have really bad, depressed days and my boyfriend lets me have A day...ONE day...and then he says, "Snap out of it tiny" and does whatever he has to to help me do it. I might get angry about something and he'll just raise an eyebrow and say, "Are you done?" and then we move on. And when I'm being particularly ridiculous he just rolls his eyes and keeps talking to me like normal until I settle down.

Those of us with RSD who have our lovely mood swings know that it's the pain talking when we act this way and we get over it. The worst is if we feel like we actually hurt someone we care about. My boyfriend understands this, so we get through it. Not that I think I've ever been hurtful...just get annoyed or upset about stupid things sometimes...irrationally. He actually laughed when I lost it on my mom a few times over something stupid like her bringing me Jello, already opened, with a spoon in it, that I didn't want. He said it was hilarious because I never got upset over the stuff that should get me upset...it was always the most stupid thing possible. She did not take it as well as he does (but then she doesn't deal with it every day like my boyfriend does), so then I would have to apologize when I came to my senses.

Anyway...sorry to go off track...just want to let you know that you are not alone...and some of the ways that my BF deals with my nonsense.

Steelgirl,
You see, he and you are not alone.
Welcome to the family were we chat, vent, laugh and just read. A nice place to come and just know that we understand and support one another...

There are changes in RSD patients brain chemistry.

Sticking his head in the sand and taking it out on you seems unacceptable IMO.

I treated my son too harshly years ago when my pain was out of control, for a period of about 8 months. He understands some of it was beyond my control, but it effected our relationship for years. It was really hard for him to trust me afterwards.

The first thing I did was see a pain psychologist that helped me learn to breath through the pain. Learning to accept that you're disabled is not an easy process either, and he might need a therapist to deal with that as well.

I refused strong meds for fear of addiction (family history) and my then doc didn't really disclose what he was prescribing...but starting opiates was a big step for me to begin behaving like my old self again--especially in regards to my relationship with my teenage son. Teenagers are never fun, but I was lucky to have one that was high achieving and mostly drama free and my pain induced foul moods didn't do him any favors.

Insomnia is another issue for those with chronic pain. If he's sleep deprived, that will only exacerbate his problems.

Would he go to couples counseling with you?

I will say, other family members have taken my flares personally, when I just look miserable and get quiet. Lord, one of them even has complained, when I breath loudly--which I do reflexively at this point. But they can ask now, and I can explain, "No, I'm not irritated with you. I'm just having a bad day." When my pain was out of control there were times I really was inappropriately angry.

I did it again last night. My husband was taking me to dinner and wanted to see if they had what he wanted before we ate. So I stood there on one foot for what seemed like 10 min. or more and was absouletly ******. I asked him, how long does it take to look to see if they have bread pudding? Wow!
The problem is standing on my so called good foot, which is starting to have pain and the running cold water feeling. My bad foot throbbing because it is not elevated.
Lit love said about sleep deprivation, that is true a person does not act right when they are missing sleep.

My problem isn't missing enough sleep (I have the luxury of staying in bed). It's waking up in pain at all hours then trying to go back to sleep. I never seem to get a night of continuous sleep anymore...:mad:

A disrupted sleep cycle is horrible on your brain function as well. If you can't sleep through the night you need a stronger (I don't remember if you've discussed your meds before) extended release or time release pain medication. Being asleep should be the easiest activity on your body in a 24 hr cycle. Taking a little extra breakthrough before might be an option as well.

Not a doc. Not EVEN a doc on tv.

Just someone who had a doc ask years ago, "When was the last time you got a full nights sleep?" My answer, when I stopped crying, was in years. Having someone finally recognize the obvious was a relief though, ya know? And even then, I was given Ambien (nasty stuff IMO) but it was better than not sleeping, although nothing is like the natural sleep cycle.

Emotional Changes
 

I have seen big changes in my husband's mood and anger levels. It is more than just being in pain, but, from what I understand, the very nature of RSD causes changes and disturbances in the emotional behavior realm. I just found out that ** Hopefully you can find answers for you!

I was prescribed Ambien awhile ago but after reading about the side effects I didn't go for it. But I will bring it up to my neurologist. A full night sleep would be nice...

There are better options than Ambien. A few years back I received prescription strength melatonin that worked well, but my pain is being managed well, so...

Thank you everyone for your responses. Some of them made me tear up because it is good to know that I am not alone and that he does not mean to snap at me. I always call him out when he's acting like a jerk because that is just me. He fell in love with me for that reason and I'm not going to change. :) I always treat him like there's nothing wrong with him because he acts normal (for the most part), but I need to get better about not asking him to do things that he can't do.

He does NOTHING for his condition. He has started to take vitamins (St. John's Wort and a multi-vitamin), but doesn't do any exercises or use anything to help. He has a TENS unit and some Bio Freeze but he doesn't use either one anymore. He does wear a sleeve over his bad arm, especially when the weather changes. He sleeps well at times, but tells me that his sleep is interrupted and he doesn't dream because he is missing a cycle of sleep which is common in RSD patients?

There is also something else that is odd and maybe you all can shed some light on this.. He is into things that would have been strange to him before his accident. He watches UFO shows and reads about crazy things online. He knows it's weird too (because he has said so), but he continues to do it. He used to be into cars, which he still kind of is, but this alien obsession has taken over. If it makes him happy, I am fine with it, but it is weird that his hobby has gone from cars to aliens.. Anybody else experience something similiar?

Not sure about the aliens thing. It may just be that he is searching for more stuff to take his mind off the pain and keep him occupied. I never spent so much time on the internet before (I was always too busy doing stuff) but now I would say I have an obsession with certain things that before were only a mild interest before. Or it could just be he has gotten bored with the cars to some extent and just needed something new.

Just having something that helps you take your mind off the pain and refocus is a way of dealing with it. When I was working I actually was able to deal with the pain better at work because I had so many things on my mind that needed attention while I was there and it was easier to push that pain towards the back. It was still there and by the end of the day was agony...but while focused on those other things I just wasn't thinking about it constantly. When your thoughts are all consumed with pain, pain, pain you just can't function. We all need something to focus on to help us keep the rest straight.

I don't sleep well at all...I wake up many times during the night and sometimes can't fall back to sleep at all. Other times I am just up for hours at a time and catch small bits of sleep here and there during the night. I'm lucky if I can get 2 hours of sleep together.

Steelrgirl,

Is he still able to maintain a regular job?

Just because we can relate to what he's going through, I hope you don't allow the situation to remain ongoing. The fact that you've stuck with him "through sickness" is amazing. Having RSD doesn't give him (or any of us) a pass at treating famy or significant others poorly.

The alien question, not getting sleep and having severe chronic pain can't be doing ANYTHING positive for his mental health. Any underlying mental issue can be made worse...

Did his interest in cars involve him working on them physically? If so, the pain it would produce would likely kill the appeal.

I've noticed that if I'm in a very bad flare, if I can engage the obsessive part of my brain, it is easier for me to ignore my pain. I consider it a very dysfunctional band-aid of sorts. It isn't a healthy long term coping mechanism if that's what he's doing.

I'll confess that when I'm desperate, I wax my legs. It's occupies my brain in a different type of pain activity. It's akin to what cutters are trying to accomplish, just in a much less extreme fashion. Shaving is slightly dangerous anyway since I experience severe unpredictable spasms in both my hands, so I can justify why I do it--I'm killing two birds with one one stone... ;) But, I discovered this little trick years ago, when my pain was out of control...And what started as a personal hygiene adaption, turned into a nightly ritual to help me cope with pain. And I knew it was weird at the time, as well. This probably qualifies as too much personal info...but it seems to kind of oddly relate, so...

Maybe his alien research engages his brain in a way that gives him temporary relief... How much time he spends doing it, and if it has any negative effect on his life should determine if it's something to be concerned about.

He does still work, as he owns a small Body Shop so he works at least 8 hours a day and sometimes more. I worry about him working so many hours, but he takes a lot of breaks throughout the day and knows his limitations.

Things have gotten better since I called him out on his attitude changes the other day. I will leave him if things don't get better and he is fully aware of it. I'd rather be without him than be miserable with him. I also told him about this forum and I think he appreciates the fact that I am trying to educate myself on his condition. I hope he can join because I really think that hearing what others are going through will give him peace of mind.

He doesn't get obsessed with the whole alien thing. It is just something he knows a lot about now and watches and DVRs shows on aliens, UFOs, etc. It hasn't consumed his life. Thank goodness! It is just completely different that what he was into before his accident. I didn't know if others experienced something like this..

That would probably work out great for you both if he'd jumped in. It would at least let him know he's not alone. RSD reeks havoc on our emotional as well as our physical states. Sometimes we just need to lean on a sympathetic ear.
We all deal with this monster in our own way but one thing we all do the same is talk...