My sister has been dx with rsd and has recently been deemed disabled at the ripe old age of 29! She doesn't live near me so I can't physically help her but I'd like to be there for her emotionally.

I have cfs, fibro, and possible ms so I understand pain but I don't think I can understand the intensity of the pain you all go through. Can you give me any suggestions on how to care for her over the miles? I want to be here for her in any way possible. I don't want to say or do anything stupid, she has enough on her mind already.

Any info would be helpful. TIA!

Welcome! It always so sad to read another new post of someone with RSD. The fact the you have fibro and cfs certainly gives you a heads up, unfortunately. But it saddens my heart. I hope this post finds you doing well today. You will find a great support system here and you might introduce your sister to the forum, if you haven't already. I live in New Mexico. I will have been diagnosed with Full body RSD for 20 years in July 2009.
I think that we have to validate each others emotions, in the angry painful times as well as the upbeat positive days.
Also, encourage your sister to do what she can to her standards now
and not compare herself to the past or anyone elses standards.
Pacing myself has been one of the hardest things for me to get a grasp of.
Advocating for herself in regards to her treatment.
Reaching out to others, therapists or church councilors.
If she is new to RSD, then some personal research on RSD/CRPS is important to her. There are alternative treatments to investigate. The RSD Association is a good place to start www.rsds.org/ .
Don't give up hope and as someone told me when in trouble "Don't get desperate get Curious" . There will be desperate, hopeless days, along with happy hopeful ones.
Thats about all I can think of, now I'm sure the others will jump in. There is a pretty bright group of people here. I wish you and your sister all the best. Diana

[QUOTE=michellern;438186]My sister has been dx with rsd and has recently been deemed disabled at the ripe old age of 29! She doesn't live near me so I can't physically help her but I'd like to be there for her emotionally.

I have cfs, fibro, and possible ms so I understand pain but I don't think I can understand the intensity of the pain you all go through. Can you give me any suggestions on how to care for her over the miles? I want to be here for her in any way possible. I don't want to say or do anything stupid, she has enough on her mind already.

Any info would be helpful. TIA! [/QUOT

Having just been diagnosed myself (1 month ago), I can say how much it means to me when people simply RESEARCH this disease and dig into the internet to get as much detailed info as possible (I personally have had to BEG my family members to even read anything about it. Most still haven't and it makes me feel like they do not care or believe me). Then when you talk to her, you can be informed and knowledgeable and she won't have to explain every detail to you (which gets tiring). You'll already have an understanding of what she MIGHT be feeling and can simply agree or empathize.

Also, we have bad days and better than bad days.....that's about it. On her bad days, let her vent and don't give her platitudes or "maybe you'll feel better tomorrow" or crap like that (I get that from one of my family members......she means well, but it is maddening, and dismisses how I'm feeling right then). Just love her no matter where she is and let her be in her moment. She'll hopefully soon have a "better than bad" day and want to share that with you as well. Don't take it personally if she's crabby.....constant pain wears on us, it is scary, we feel out of control of our own bodies, we feel guilt that our disease is impacting every person we love, etc...

I've asked people to stop asking me "How are you today???" because it is a constant reminder to me that I'm not ok (or as well as they would like me to be). Rather ask, "How is your pain today" or something like that. That validates that we're ALWAYS in some degree of pain or discomfort and invites us to share details or symptoms as we feel them at that moment (as they tend to fluctuate day by day and moment by moment). I already find myself getting "used" to feeling like my foot is ice cold (even though it's burning up) or the ants are gnawing at my toes or that my muscles are twitching uncontrollably......it's always with me but I rarely mention that anymore unless it gets really bad. It's just become who I am now. Again......I'm only one month into it, as I mentioned. Get back to me in 5 or 10 years and I may feel differently!

Also, take mental notes of what she tells you she's experiencing. If she complains that her clothes are hurting her, surprise her by buying and shipping her some silk socks or silk sheets or a silk nightgown for her to wear. Have them gift wrapped for an extra touch. If she is sensitive to odors, send her unscented candles to light by her tub to relax in or pamper herself (and encourage her to do that) or flowers that don't have much fragrance to cheer her up (or is she's not sensitive to fragrance, send her the most fragrant!).

As you research this disease, you may find some products or teas or creams that have helped some people with RSD. Send one to her occasionally for her to try. She might not otherwise buy it for herself. These are just a few ideas (and man, I wish someone I knew would read this!!!) off the top of my head. If nothing else, send her a simple card every few weeks just telling her you love her.

Take it upon yourself to be an advocate for ALL of us with RSD and educate every person you can about the disease. Encourage people to donate money to the RSD foundation to hopefully find a CURE for this monster.

Anyone that is diagnosed with an incurable disease goes through grief. There are five stages: denial, anger, bargaining, depression, and acceptance. She may fluctuate between these stages by the moment, the day, and even through years. She may feel several stages at the same time. Understanding that will help you support her more.

I am so sorry your sister was diagnosed with this terrible disease and I am so sorry for your own health problems as well. This is a wonderful opportunity for the two of you to bond across the miles and develop an even closer, more intimate connection. I can tell you that she is very lucky she has YOU for a sister!! Best wishes to you both!!

Hello and Welcome to Neurotalk, I am so very sorry to hear about both yours and your sisters health problems and I really hope you can find something that will help you both real soon!

I have RSD in my left leg and my right arm - I developed it when I was 12 years old after I sprained my left ankle and am now 13. The main thing that really helps me is knowing that I have friends and family that I can rely on when I am having a bad day and wont just tell me to "suck it up" and stop being so miserable. I have SO many family members that just don't understand or don't want to try and help so it really does make a difference knowing that my mum is there to support me whenever I need someone to talk to. Unfortunately, there isn't much our family members and friends can do to try and help us but it really does make a huge difference to me even when my friends and family just ask me how an appointment went or how I am feeling - it makes me feel not so alone in my battle against this horrible moster (RSD)!

I agree with what MomInPainRSD said also about researching, it really does help if someone does a lot of research about this horrible illness as sometimes we aren't able to get onto the computer due to pain etc. When I was diagnosed with RSD, my mum did so much research and it really did help me as she found out what treatments were available, what sort of doctors I should see etc etc.

I think it will really help both of you that you both have an illness so you can relate somewhat to what eachother are going through. I hate that you both have such horrible illnesses but I think it might make you closer to eachother because you understand what the pain is like and you can both be there to support one another.

Another thing that helped me when being diagnosed with RSD was this forum and others like it. Whilst family and friends try to understand what RSD is, they will never totally understand unless they suffer from it also so it really helps having others to talk to that are going through the same thing as me. I would really encourage your sister to become a member of a support group such as this if she is able to as they really do help and don't make you feel as alone and depressed!!!!

If you or your sister ever want to talk, please know that I am here for you and I DO understand what your sister is going through! I hope and pray that you both find something that can help you and ease your symptoms!

Love,
Alison.

if you go through ther topics on here i just posted a research paper on RSD that i did for my english class. its like 10 pages long but goes over every aspect of rsd pretty well. you might find it knowledgeable.

i've had it for 5 years, and was granted disability at the age of like 22, i'm 25 now....

I really liked your paper, BTW msdrea83......I copied it and emailed it to my Mom, husband, and Father. I thought it was very thorough and insightful. How did you score on it??? What a remarkable way to further awareness of this disease!!

thank you! i got an A+ on it

Aloha Andrea, this is my first post on any online forum, ever! (I have read plenty). I'm 25 and was diagnosed with RSD (or CRPS, depending whose diagnosing you) almost two years ago. I was also granted permanent disability over a year ago. I wanted to write a research paper about RSD last year but my professor said that it would be to "depressing" since I have it. I live in Hawaii now but I was raised in Stockton and my mom took me to Santa Cruz ever summer. Santa Cruz was the last place that I vacationed before I was diagnosed with RSD and since we're the same age I just felt like responding in a forum for once.

I absolutely agree with "Mom"-it's very hard to talk with family members about how things feel unless they do a little digging to see what RSD actually feels like. It is such a strange malady to have and unless you are aware that things like opening/closing a door or leaving a window open can cause true pain, it's hard to relate to. The best thing that you can do is advocate for the people around her to be familiar with her personal triggers and to take the pain of RSD seriously. Like the fibro, the good day/bad day premise is something you understand, but I have to say that the constant-ness of the pain is maddening. Being her advocate and familiarizing yourself with her RSD can bring her more comfort than you know. Thank you for being such a loving sister and supporting her through her struggle with RSD.
Lori Lee

Thanks guys for all of your great ideas! I've been researching to find out all I can, it does seem to help.

I love the idea of the gifts through the mail! That would be a great pick me up for anyone!

Thanks again!