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...

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.

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!