Hi. I am Lisa and I am new here. I developed RSD in my left leg two years ago and it went away after eight lumbar sympathetic blocks. In September of this year, I began seeing my orthopaedic surgeon who has performed surgery on both of my knees since 2003. I had twisted my right knee in late July and the pain was not going away. I was reluctant to see my ortho as he had previously informed me that eventually I would need total knee replacements. I have been using a crutch (sometimes two) since October. My ortho put me through tests, physical therapy, more tests and steroid injections. In January he referred me to the pain center and suggested I had RSD again. I was floored! I didn't know that RSD could come back and that it could be on a different part of the body. And if he knew, why did wait so long to fill me in? Sure enough, RSD again. This time it is much worse for me. Ten blocks and no break in the cycle. I just had RF ablation on Wednesday and my pain is worse. I have a supportive family (as best as they can be). I feel rotten about what they have to go through because of me. I can't tell them how bad things really are, I don't see how they could handle that when I can't really handle it. My mom is great and is my best friend, so I try to protect her. My husband sometimes suggests that I try to "blow it off" (regarding the pain), so I don't tell him that the pain is so bad that when I am in bed I am begging to fall asleep and that when I wake up, I am severely disappointed because I realize that I have to live another day like this. That is very selfish of me, I know. I feel so two-faced, giving them my fake smiles all of the time and holding back my tears until I am in the shower.

After reading all of your stories, I feel like I am just a big baby for acting and thinking this way, considering what you all have endured. I also have bipolar which for the most part is well-controlled on meds, but sometimes it feels like the depression wants to take over. How do you all do it?

Hi and welcome,
I hope you don't mind that I copied your intro post here- for more Hellos :D.

One of the best things about these forums is you can vent all you want and we will understand.
Sometimes just typing out all the frustrations is such a release.

Hi, Lisa

Don't feel like a big baby! We are all going through all sorts of things. Everyone's exact symptoms, onset, successful treatment, etc. are different. It's one of the things that makes RSD so difficult to diagnose and frustrating to deal with.

I hope you log in frequently. Even if you don't post much (I don't,) there is a lot of wisdom to be gained form reading other's posts, and comfort in knowing you are not alone.

A big welcome! If you want to vent, this is the place. If you want to join in the fellowship, you are already there.

Glad you found this site.

Mike

hey lisa - i feel your pain (literally ;-)) and your frustration. i was recently diagnosed after a shoulder surgery and it is very difficult for people to understand what RSD IS let alone what it DOES to your body and your life. i've had weird symptoms that maybe other people don't catch, but i do. like the stuttering as of late and the fact that i can NOT sleep if i don't take a sleeping pill because my brain gets really funky. i've never had problems sleeping in my life.

so you have found a good place to vent and it is really ok. really. nobody here gets tired of hearing how much pain you're in or how blue you feel. this is the most caring place i have found since my diagnosis.

i suffer with depression also. i have been diagnosed bipolar II, PTSD... amongst a list of other things that do NOT help in dealing with RSD. i actually went off my meds (cymbalta & celexa) because i was scared i would forget and take 1 too many methadone tabs and OD or something. i have had some very very blue (bordering on black) days as a result. so at some point i will talk to my doctor. i still don't know what is going on from day to day.

i hope that you feel welcome here.

shalom,
ang

Welcome! :hug:

Lisa,
Welcome..I am also new to this thread. I have RSD in my left foot. just started this week with pain management. Still trying different things.
Mary
:grouphug:

hey Lisa,

Welcome. As the others have said you are NOT a "big baby". (unless, of course, you particularly enjoy wearing diapers, being bottle fed, and have a wonderful pink babygrow? and maybe a bow in your hair?), but seriously, you are not.

As you know, having dealt with this before, this disease is really REALLY horrible!

I was 16 when I developed RSD after a fall and I am now 21 and in university. The only way I have been able to manage to live with my pain is through two facedness. There are few 21year olds whose aim is to make friends with people in pain!! but, as a two faced person, who can hide pain to some degree, I have awesome mates who are starting to understand me behind and through the pain and are wonderfully supportive. For me, the opportunity to switch from pain to happy face is a coping mechanism. I have missed out on so much since I was 16 - with the development of happy face I can join in more, avoid pity and try to get on with my life as best as possible. Best friends will do anything for you and they will be willing to take on any of the pain you choose to share (something I have slowly learnt - but I hate discussing my RSD with non RSDers because they never get it and I have been scared to burden others with the RSD parts of my life - which is why neurotalk gets a bashing from me most days). My family are very supportive - but were actually the reason I started two facing - about 4 or 5 months in to me having RSD mum decided if we were going to live with this as a family then I would have to learn to not scream at night, or cry or call anyone else in to sit with me. It was one of the hardest things she felt she did, but I really thank her for it now. (My best friend still comes and sits with me - but it's impossible to get him out of my room if he thinks my pains bad! - he's feeling sorry for himself for having stayed up 3 nights in a row - but won't listen when I try to force him to go to bed).

Anyway - if that is how you deal with your pain, sweetie, then that is how you deal with it!!!! There are very few right or wrongs in PM.

Some pain killers can cause a depletion of seretonin chemicals so lead to more depression - so that might not be helping with the depression!

Love and hugs

Froggsy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

How do we do it? Well, whatever we went through today, it might be different tomorrow.

Hi Lisa,

So pleased you found us, please vent as much as you need to...we need to too!
And Frogga - maybe RSD makes one a masochist too, cause we love your bashings :hug:
all the best!