I've been trying to find a blog so I can communicate with others who have RSD. I too have hot feet and am on Cymbalta which does help in terms of the burning. The cold weather has a huge impact on my pain level, I was wondering if you live in a cold/warm climate and if you like me live in the North East whether or not your foot gets wose when the weather is cold and damp. I have been suffering with RSD for the past 20 years right after I gave birth to my daughter when I fell on the ice. Curious if you would like to chat some more.
Hope you had a wonderful Thanksgiving Holiday.
Last edited by SR1616; 11-30-2008 at 06:29 AM.
I live in Michigan, and yes the cold weather plays a big part of my pain, or any change in weather causes great pain. I was taking Cymbalta as well, but was taken off that and put on Effecxor XR because I was having problems with fatigue. Now, a couple of years later I realize that everything causes fatigue. LOL. I would love to move to a warmer, dryer climate, but I would have to leave my husband here, because he won't even discuss the idea. I often wonder if the situation was reversed, if he would feel the same.
I, too, am new to this forum, and have found great advice and the camaraderie is great, although most wouldn't want to be in our club. I didn't think that I would ever be involved in something like this but found it to be a great comfort, knowing that I am not alone in the battle with RSD.
Hoping you are having a less painful day, can't bring myself to say pain free, because I haven't heard of any of us having a pain free day
I'm another long-timer with RSD. I got it when I was 15...22 years ago. I'm sorry you've had it a long time too, but it seems rare that I find someone else who's had it as long as I have.
I live in NY (Long Island) and don't notice a difference in my pain with the weather, but maybe I just don't pay attention since there is no way I'd ever move from here. I use a morphine/bupivacaine pump that helps me a lot (have had it for 7 years).
Again, it's nice to meet you. I hope you keep coming back here.
I live on Long Island, too. The weather does bother me A LOT! but like Sharon, I'd never move either. I find that wearing a long sleeved cotton tee shirt and leggings helps me tremendously especially when it's windy. It's not a great look but I'm past the point of caring. I've had RSD for almost 3 years, following a MVA.
Welcome to the board! There are a lot of great people here!
Welcome to this board -- It's a great place to find kindness in the midst of despair, caring people who are easy to chat with, and we're able to really know what each other are going through since we've all got RSD -
I've had it just over a year. Had left foot surgery in July 07 and got diagnosed in late September of 07 -- Been on Lyrica and Cymbalta and still working 15 hours a week and able to walk, so I feel very blessed.
Must run for now, it's really late and I work all day tomorrow - You take good care and I sincerely hope you have a good day tomorrow,
I am so glad, I read this post. Ever since I started going to the Pain management Dr for my CRPS, they would comment on my high blood pressure and fast heart beat. The nurse told me when you are in pain, it raises your BP and heart beat. I guess with CRPS/RSD the pain can affect your body so bad it really does mess with your BP and Heart beat. I'm not sure if my family dr hasn't said much about it, because really don't know I'm having this problem or how young I am. I have noticed since I started gaining all this weight the past year, that maybe it could be another reason for the spike. I might just have to talk to my Family Dr on the 22nd when I go see her about it.
Hi, I live in England and the weather is unsettled all year round. I find that when it is hot my legs and feet swell and really are painful, when it is cold I dont get the swelling but the pain is worsened. I know this hasnt got anything to do with weather change. But I suffer with migraines and I have noticed that when i get one the pain in my legs is more severe? Any ideas why?
I am the same as joolz62. In the summer I cant handle the heat and humitity.. I flare up with in minutes walking from the air condition house to ourside.. My hands will turn colors right away.. red and deep purple.. If I con't to stay out in the heat I will have a major flare up that night...
As for the cold.. I don't swell up.. my hands don't turn color.. instead I get a deep bone pain all over.. Feels like the flu.. So I need to be in 70 degree weather at all time.. lol..
If I do start with a flare up. I just take an extra dose of neuronton.. I kind of balance it out.. I know when I need more or not...
Hope this helps..
I didn't mean to not answer your question about going to the new doctor - at this time you've already gone - I'm truly sorry I wasn't "virtually there" to hold your hand and help you with the questions to ask after I offered to help. Did you like the neurologist? Do you feel like he is going to treat "all of you"? Is he helping with your finger tips? I've been off the board since before Thanksgiving - have been having a real bad time with my RSD and just haven't had the energy to read or type. It's all I've had in me to take care of myself but I apologize for not taking the time to answer your question - this is the only thing about this board that truly frustrates me - if we could exchange phone numbers on the super bad days I can always still use the phone but not the computer. Sigh. Well, here's my wish that everyone is doing well and that many good days are in front of us!
Also, Rose... you asked about the wheelchair - I'm the one who has RSD in the R foot/leg and I go between using a Roll-about and a wheelchair - right now I'm in the chair as my entire lower body is not happy - I hope and pray as the weather warms up that the RSD will recede again and the meds will work better again and I'll go back to being more ambulatory -but if you had a question about lower extremity - I was a simple foot injury (1 bone fractured) that developed into this and it all started in June of 1997 - so that is a time frame for you if you have any further questions.
Lisa, So sorry to hear of the rough time that you have been going through. Yes, I went to my new neurologist and he sent me to a vascular doctor to check into why I have the swelling and discolorations. He wants to rule out anything in that direction, and then I return to see him for an EMG, and we will go from there. I'm not sure that we will be a good fit, but I will just have to wait and see. Jane
i couldn't agree more, how wonderful would it be if we were able to have a weekly 'chat session', at some point we might actually be able to do that. i too have RSD in my right foot, my foot is blue most of the time and I cannot wear any kind of sock, stocking, etc as I cannot have anything touch the skin. This past year the RSD has affected my overall health. I don't know if I just kept on going and going despite the pain, all of a sudden I just got so sick I could not move. No one knew what was wrong, I saw so many doctors, you name the speciality I saw the doctor. I believe that the years of pain and fighting the pain finally caught up with me.
It is very difficult some days to not have the energy to take care of my family the way I once did. I try and hide it but some days you just can't. I am fortunate in that my daughter is away at college and my son is a senior in HS so I made it while they were young. Somedays it is so hard, I cannot move. My leg, my foot hurt so much. I have zero energy. I will be 50 in a few months. I want my energy and life back to do the things for my family that I have done in the past. This year we don't have the Christmas decorations that we had in previous years, little things. i am thankful as things could be alot worse. I am so so thankful to have found this group, that is my Christmas Gift for this year. Thank you all. SR
It sounds like you need an extra big dose of love and warmth and caring. Is your college student home yet? Maybe you could ask your kids to finish with the Christmas decorations. And how about asking them to help you get out of bed and into the living area of house and make you a nice hot cup of coffee or tea? If you can look out the window it is truly a beautiful winter wonderland out there (stinks to go out in, though, it's wicked cold and windy!!)
I would help you if I could, I wish Hartford was closer to Providence, RI where I am right now (supposed to be) working. What has made an enormous difference in my life is the rescue dog that I adopted from a shelter with my birthday money a few years ago. He is the best friend I have ever had (other than my husband), he cuddles with me when I am down and lets me cry into his fur.
Please don't let the illness win after all these years. You have worked too hard for that! Try your PM doc again - what have you got to lose? How about making a list of what has changed, the meds you are taking, the procedures you have tried, getting your arms around the details of the problem might be one way to start to fix it. Whatever you do, don't give up!
I think all of us in the north are flaring right now with the onset of this weather. Keep in mind that flares come and go, in a few days it's supposed to get warmer and dryer.
Sandy is right.. Don't let this illness win... You have to try to stay positive.. Don't let yourself get in a dark hole.. Because it is so hard to get out...
One of the hardest things for me was asking for help.. around the house.. I was so use to doing everything.. My way lol.. of course.. but I got to a point where I had no choice.. My kids are 15, 18,20.. and believe it or not.. they all helped out.. with lots of understanding.. I know how hard it is to watch them fill the dishwasher etc.. with me I felt like saying. Thats not the way you do it.. lol.., or them vacuming.. Quick as possible and they were done.. but You just get to a point where you have to let go.. Let them help you. and focus on getting better..
Its been 8 yrs for me.. and I read all these posts and I say to myself.. Wow I was there.. I remember feeling all the anxiety, the unkown. Whats going to happen to me.. Will I be old before my time? Will I be in a wheel chair? I remember going on the internet and seeing awful pictures and being so scared that I'll be that way. Its all normal.. I really do believe as time goes on you start to accept what you have. and when that happens, you start feeling a little better.. Any type of emotion will flare you up.. Thats why a lot of us should be taken antidepressents to help with that...
Extended family and friends can be very hard on you.. They were for me.. They never understood.. but I just got to the point where I was so bad.. I did not care.. I focused on me and only me... I jumped from dr to dr until I got the proper treatment that worked for me.. One thing I always said was it is what it is.. when I had those bad days where I hated life.. I would say, there is someone out there worse off then me.. and its the truth..
Please hang in there.. There is hope.. After eight long yrs.. I am back to work.. I still have pain.. not as intense, but I know how to control it.. Going back to work was the best thing I ever did for my mental state.. and of course a little extra money helps lol.. I went from not walking, losing my house, my credit, having a stack of bills so high that I just throw away to finally walking and making some kind of a pay check...
The one thing I do wish is that our gov't would step up and help people in our situation fnancially.. Just because I have two teenagers in my house who worked was enough income for me not to qualify for financial help and I lost my house... That just makes me sick.. The gov't spends so much over seas but just can't help us...
Hang in there girlfriend.. You will get through this... That I can promise...
I can't tell you how much I appreciated you taking the time to contact me. It is so nice to hear from other people who live with RSD. For so many years I dealt with this quietly, this year however was the first year that I actually felt worn down from the disease. Since breaking my ankle and not being mobile it was as if things just felt as if they were falling apart; I literally was bedridden for 3 months. My husband was wonderful but how much can you ask someone to be there for you each and every day and rely on them for all your needs. I am now doing alot better. My doctors have told me that I must get out of the North East, if I don't there is a chance that I can lose my right leg. I am leaving to Costa Rica for the Winter, I am most fortunate as I have a friend who owns a home there and has offered it to me. I need to swim as my muscles have literally frozen due to not moving about.
Lets please keep in touch, and if you need some support at any time please contact me. We need each other and I too wish that you were closer to CT. How are you doing? Where is your RSD?
It sounds as if RSD has affected your life as well, I give you a lot of credit for coming back the way you did. I assume that you are single and had to do this all by yourself with some support from your kids. Yes, they try to help but it seems as if they don't do things exactly the way you do, that being said I think we are all thankful to have the help and just smile whenever they do something to make our lives easier and better.
Up until this past year i was very, very active and now i have difficulty getting through the day. The pain meds make me very tired but quite frankly the pain is so unbearable at times that it is something that I have resigned that I must take to survive. What is so frustrating is the fact that it takes me 2 hours to get out of bed in the morning and then I'[m in bed at 7;00 Pm and totally wiped out. I've fallen behind on paying bills, paper work and all the things that entail housework; laundry, cooking, etc. I've come to terms that I am NO longer superwoman despite feeling as if I'm letting my family down. They see me differently which at times is very difficult as I have always been able to do ten things at once and they could throw another 10 things at me and I'd get it down with a smile. Needless to say I worked way to much and did not have any free time. Now that I'm not working there are so many things that I'd like to do but can't.
I hope that you have now been able to get on your feet financially and have been able to purchase a new home for you and your kids. How are they handling all of this?
Just know that I am here for you too and feel free to vent any time.
To my new and special friends that are the best Christmas present I could ever have.
To a Healthy and Happy New Year.