RSD/CRPS Stories

Jannie, that is a really good video. I have a list for my next doctor visit. You have helped me so much, thank you.

I feel FB i can elp someone that is my 

My iPad keeps kicking out....yikes 

I have researched and learned so much form that video  so I'm happy to pass on to you Leelee. If i had not seen that video I would not have had the knowledge to go to my Dr and get the treatments I have now. I am out of pain now and you can not take pain meds with LDN that is the trade off. I'm willing to live with that to get to remission and walking again. I'm making small gains not going backwards. I wish you well and keep n learning it gives us power.....best Jannie 👣🏃

Leelee I meant to ask you where you live?  I live  in BC Canada and have an amazing Dr who is willing to go beyond conventional medicine she is a MD that specializes in Functional medicine. I'm grateful for that. 

Take care 

Does the LDN make you sleepy or groggy? That is the down side to the amitriptyline, it knocks me out to the point I drool and then I am in a fog all day.

Amitrip does that, personally it's the old. standby treatment. LDN started at 1.5 mg after one week 3 mg. I've never felt better it works on endorphins but does not change how you feel in your head like most new. They use it for MS, cancer and HIV. I think it's helping me. Take good care. 👣 where do you live??  

I live in the US. I have never heard of a doctor who specializes in functional medicine. My doctor is a trauma specialist and is the top trauma doctor in our area. I was very lucky to get him, since my injury is a workman's comp injury. He puts his patients before the companies interest. Workman's comp sends a nurse with you to your appointment to try to get you released asap, but he told her that I come first. I am thankful for that. I have talked to people that had Workmans comp injuries that were released too soon because their doctors listened to workman's comp.

You have been through a lot. Thanks for your story.

Hi Leelee

Did you get your cast off too?  What kind of cream did he get you, Lyrica is usually for fibromyalgia. It could help, I've never been on it. What is your pain like now?  Keep asking questions about CRPS they don't know everything about different treatment options. I hope you are finally out of your cast it will start your rehab, wishing you well.....👣💐

Jannie, Cast is off, I now have an air boot. I don't know what the cream is, the pharmacy had to order special order it. My doctor said he has had a lot of success with Lyrics and RSD, so we will see. In some ways pain is better, but other ways it is worse. Seems to burn more. Hopefully, these new meds will help with that. I start PT in 2 weeks, kind of excited about that.

How are you doing?

So good to hear Leelee.....I'm sure your happy to get air on your foot and leg now. The cream might be gabbapentin, I hope the treatment works for you it will help with your rehab. Keep me posted and wishing you well. 👣🏃I'm doing more now, still in my chair but using my walker with runners on now. I'm getting a bit more range of motion but have a long way to go. My progress is steady so I'm happy about that. Keep on.....xo 

Jannie, it sounds like you are making good progress. I am only allowed to have the boot off for 15 minutes at a time to ice it, but honestly, it starts to hurt pretty bad after about 10 minutes. I guess it is the RSD, it feels super sensitive.

Leelee, ice was not good for my RSD, I preferred water therapy wth warm water for 5 man to start. To me that felt so good...you'll find your own groove, do what feels right for you. If you ice but wrap towels around it first.  Also if it's burning I found a piece of  aloe Vera helped with that. It was cheaper Than buying the gel. Your choice. Wishing you well, enjoy your new free foot👣

Thanks Jannie, I have an aloe plant so I will try that. Ice is very uncomfortable for me also. I hate that you have gone through this, but I am glad you have figured out what works.

Hi Leelee 

I've gone thru so many phases with this and have found things that work for me I'm sure you will too!!  Ice and RSD does not feel good, elevating was more helpful. Take good care and go easy......👣

My foot is on fire tonight. I have tried everything and nothing is working. My boot is hurting it, I take it off and the pillow hurts it. Don't know what else to do.