OK, being newly diagnosed in October, there are a few questions that I know the pros (doesn't that sound better that "who have had this for a long time?") out there. I need to borrow you brains.
1. Does being emotionally upset of depressed worsen RSD pain or cause it to spread? ie-should I tell my sister to get off my #*%&# back because she's making my leg hurt?
2. Is it possible the area efected with RSD to "move?" The top of my knee had severe symptoms, but now feels normal (on meds) but my foot is now displaying RSD symptoms. Does the top of my knee only fell better because I am on meds? Leading to...
3. Do all of the meds that I am on (MSContin, Lyrica, Lexapro, Klonopin) simply mask the RSD and as soon as I stop taking them, I am back to full throttle pain?
4. Is it a big deal that I smoke-purely from an RSD persepctive, of course I know I shouldn't smoke-relative to my disease? Could it make it worse?
5. Is it normal, say in the first year, to have episodes of being very emotionally labile? Is that RSD in the limbic systen or emotional from watching your old life dissapate into the air? One minute I am crying and the next I am laying in bed like a bump wishing I couldn't hear anyting (yes, I am aware that I am depressed-working on it-but is part of it the limbic system?)

Hey pick any one or all of them! This is like RSD Jeopardy (I'll take number 4 for $300 Alex). Bless you all twice for answering my weird questions!

Lori Lee

Hi Lori Lee,

You are just too funny! smile. That's the best way to get thru this disaster we find ourselves in. I love your questions and all others. That's how we all learn, from a collective group of friends with lots of experiences, and collective Drs. some not so good and some genuine researchers. So..............no more apologizing!!!!

1. Yes, being emotionally upset does effect our pain level. When we know a certain person affects us negatively, just thinking about them coming over, starts the chain of events, like anxiety, rapid heart rate, sweating, increased blood pressure, pain. maybe spasms. The Limbic System is part of our brain that influences our emotions, judgment decisions, depression and naturally because we are going thru a huge loss of not just our physical health, but loss of work, which is very rewarding for a lot of us, a means of security, helping other people, brings self respect and a sense of accomplishment. How much does your sister know about RSD? Does she believe you? Does she think your imagining it? You might ask her to do some research and show her how and where. If she doesn't want to do that, there is not much you can do. But, if she is difficult to be around, you might explain the part anxiety plays on our pain level and emotional health.
As far as spreading, anytime our sympathetic nervous system stays fired up and we can't get is calmed down, I would think it was contribute to spreading, but I don't really know. I know if we are going thru a rough patch, we can go into a flare. I take anti=anxiety meds three times a day, and it really helps me stay calmer.

Crying is natural and I feel good for us. We can't keep the emotional pain bottled up, that hurts us. Just think of all the losses we experience,quality of life, physical exercise and sports, social events with our friends and family. Traveling, The saddness our family experiences seeing us suffer so much. Grieving the loss of a loved one in death, is very much the same process in grieving the loss of our former life. We all miss it, but learn to
accept where we are, and try to stay positive and grateful for our blessings and life itself. I'll write more Lori, it's really late.

Do you have any kitties or dogs? We have a sweet main coon cat. She sleeps with me and she's like a valiuim to my system. Take care, Oh, back to your sister, have you tried talking with her before about your health and it is affecting you? Does she ask questions?
Or get after you for all the meds you are on? Sometimes, if talking hasn't worked before, Finding a nice 'sister' care of how much she means to you and how this health issue is getting in the way of your relationship. Sometimes, when someone reads a card about how much you care and don't want anything to hurt your relationship, they can reread it a few times, and think about it. There are some good information on the net, maybe you could make copies of and past on card. Anyway, just thinking outloud. Sleep well, Loretta

Hi LorieLee,

They are great questions that you are asking and please don't ever apologize for asking them ... there is absolutely no need and it is SO important that you understand RSD the best you possibly can!!

My pain is always sooo much worse when I am in a stressful situation!!! My grandad sadly passed-away in November and my pain was REALLY bad for a few weeks after he passed away whilst we were dealing with the funeral etc. I am now taking my 9th Grade 'Options' at School and they are very stressful as I need to decide what classes I want to continue doing and what courses I need to take at school etc. I do try to avoid stressful situations but of course, it's impossible!! If my friends or family do something to annoy me or stress me out, I will tell them but in a "nice" way so that I don't upset them too much. It's important that they know how we feel and that they are hurting us!!

My RSD started in my left foot and later spread up into my knee and thigh and then my hip. I later had an injury to my right arm and that caused the RSD to spread there also. I have spoken to many people who have said that their RSD started in their foot and then spread up their leg after a period of time etc.

Medications will only mask the problems of RSD unfortunately ... they wont "cure" it and the pain will probably still be there if you were to come off them! I personally chose to come off all of my medications as they weren't helping me at all and I feel that the side-effects often outweighed the benefits. It was a very difficult decision to make but I didn't see the point in being on the meds when they weren't helping me at all!! I've spoken to quite a few people who have been on meds for a certain length of time and after so long, their body builds up a tolerence to them which stops them from working quite as well.

It is completely normal for you to be upset, angry, frustrated and depressed when dealing with such an awful condition like this!!!!! Many times I have felt REALLY angry and as though my life isn't worth living but then I stop and think about the good things that I have in my life and it makes a difference. I also see a Psychologist and she is lovely and actually takes the time to listen to what I am going through. My first Psychologist could care less and when my mum told him I was really depressed, he just went on about talking about my family tree and never addressed the problems!!! It's really important that you get in to see a good Psychologist who can help you and actually understands what you are going through - they can make a lot of diference to your life and prescribe anti-depressents that may help you!!

I hope you feel better soon and if you have any more questions, please let me know!!

Stress and strong emotions will definitely make the pain go up, but not spread. If someone is making your life more stressful with a bad attitude or anything else then you most certainly need to tell them to stop it. I know it might sound a bit harsh to some but I cut the people in my life, even my family, out of it that didn't believe me and were keeping me upset with their comments. Life is stressful, so it's not like we can totally avoid it,but we can lessen it by our own choices, especially when it comes to people.

Not sure what you're asking here. We know rsd often spreads, so if you're getting rsd symptoms where there were none before then it sounds as if it might be spreading. The meds definitely help keep pain down most of the time. I'm sure if you were to stop the meds the top of your knee would feel so great anymore.

Short and simple answer,is a resounding YES. Which is what I just said above. LOLOL The meds aren't masking the rsd per say, just toning down the symptoms associated with it.


Being depressed is from losing the life you knew, being the person you were and dealing with the pain and financial problems that come with all of it. It's hard not to be emotional. I wouldn't say that being all over the board emotionally can be blamed specifically on a system in the body. It's just a normal part of working toward acceptance and dealing with your "new" life.

Hope this helps.

Hugs,

Karen

lori lee,

i used to work for a man who, if u said 'i have a dumb question', always answered, "there r NO dumb questions, only dumb mistakes that could have been prevented by asking a question".....we all loved his attitude, and we all learned lots from him too......so ask away....there r NO dumb questions!

i think everyone tackled this, but i'm going to add my bit -- stress makes your pain worse....no doubt, no question, no ambiguities.....stress, emotional or physical, can HURT.

smoking?.....some doctors foam at the mouth on the subject (in relation to rsd, not just overall health) and tell u that u won't improve till u quit.....but nobody seems to know for sure and the fact remains that nicotine is a powerful pain reliever.......it's hard to quit something that makes u feel better, if only temporarily.....my pain doc says we will discuss this at great length when he has something genuinely useful to offer me.

i think most of us have had to deal with some level of depression with this rotten disease......aside from the pain, there r so many losses associated with this -- job, friends, hobbies, independence, often a whole way of life.....a friend of mine from this group once said 'i feel like i stopped to tie my shoelace and the race just went on without me'.......it's very simple -loss can be very depressing.

i hope everyone's answers are helpful to u......but i'm still not betting anything on 'final jeopardy' because i truly don't feel like i have many of the answers!

best to all,
liz

Hey Lori Lee --

Stress makes the pain in my foot WAY WAY WAY worse -- I take Valium in advance (if possible) whenever I know I'm going into stressful situations. The problem, of course, is that I can never really foretell WHEN or WHERE I'm going to encounter stress -- ARGH!!

I am experiencing a jump of symptoms right now. My RSD started in my right foot/ankle last June (2008), and now it's jumping into my left foot. I'm scared to death. For the past two month, I've had "zingers" in my left foot. Now they're coming more and more frequently. I pray and pray it doesn't spread to my other foot.

My pain is back full throtle right now because I'm switching pain meds from Neurontin to Topamax and OMGosh it's killing me. My doctor said it's because I've decreased to much on my Neurontin, but I'm not on enough Topamax -- OH NO!!!! It's awful!!! I can't wait to get up to full strength and hopefully get some relief (please, please, please some relief!!!).

I don't smoke (I quit 1.5 years ago), but there's something about being hurt that makes me want to start again. I won't, but BOY OH BOY I want to!!!!

Finally, I'm wicked depressed and each day is a challenge to get our of bed. I DO get our of bed and try to live as normally as possibly, but it's not easy. My foot is at a pain level 8 most days and it's so hard! Fortunately, I have great faith in Jesus and He's really helpful.

Blessings!

4. Is it a big deal that I smoke-purely from an RSD persepctive, of course I know I shouldn't smoke-relative to my disease? Could it make it worse?

My answer: QUIT! I quit 11/07. Everytime I take a puff when my son is at the house, altho I don't do that everytime, my feet almost always go into OD(over drive) PAIN. It takes quite some time fot it to calm back down too. So not worth smoking for this reason. RSD hit in 2003 & I didn't stop for 4 yrs & I am so glad I did. I have take several puffs this past week & half & I so want one right now. It does relax me for a few moments. One thing tho, the earlier in the day I take the puffs, the less pain they cause. Strange eh?

I wanted to post to this question. I don't know if smoking effects everyone this way, but it sure does me.

DebbyV