It looks like many people on this site have this horribly painful disease. I've had it for over 14 years, The Docs say I am in stage 4 - when it spreads faster and becomes more intense. I'd like to know what some of the treatments others are on that have been effective - even a little bit.

Lynn,

Sorry to hear you have this monster. Other people have tried ketamine, tdsc, calmare. I understood that this disease is no longer diagnosed in stages because some people might have one or two things going on from each stage. (rsd foundation)
Welcome to the forum.

I only have had for almost 26 months, and so far am limited to just Baclofen and Carbamazepine while I search for doctors willing to work wih me and not give up.

I'm so sorry to hear that you are going though this. Welcome to neuro talk...it is an excellent site for connecting with people who are going through the same things you are and understand what it is like to live with this monster every day.

I don't know what you have tried...in 14 years I imagine it has been a lot. For me, physical therapy has been the best thing for me in terms of getting the function back. But it's important to get the pain under control enough so that you can DO the therapy and also to get a good physical therapist who knows what sorts of things you need to do with RSD. It's a different approach with RSD and it is a long, slow process, and my experience with some therapists is that they just don't understand what RSD it and how to work with a patient who has it. My therapist wasn't an expert with RSD but she was compassionate and willing to learn about the RSD and literally saved my life by giving it back to me.

TENS unit was key to getting my pain under control. My physical therapist worked with my doctor to get me one of my own that I can wear as I do the therapy. I also have a ultrasound heat therapy machine that I use every morning for 10-15 minutes and it seems to have added additional relief...not a lot but it seems like it takes me longer for the pain level to get up to 9-10 than it did without me using it. I also have lidoderm patches that I use when I don't have the TENS on or in other RSD areas besides my ankle (that's where the RSD started but it has spread to my whole upper body now too).

Heating pads help me too. With the TENS on I can put a heating pad on top of it or on other areas to help relieve some of the pain. I have an electric on for when I am staying in one place, a microwaveable one that I can use on my ankle if I can tolerate the weight of it (sometimes I can and other times not), and also the one use disposeable kind that you can buy at the store (they are light weight and can be used on any RSD area that I need them on).

Hot baths with epsom salts are a daily ritual for me and I usually start my day with one. If I'm having bad spasms or a really bad flare I might also take one later in the day. I also have a space heater that I use...but this can make it too warm and uncomfortable if there are other people in the house so I only use it when I am on my own or in a different room.

I've also learned to find things that help me cope with the pain better...distract me so to speak. It's not ideal to be left with just "coping" with the pain as opposed to lessening it...but let's face it...nothing takes the pain completely away so I have no choice but to learn the ways to cope with it when it does come.

I've also gone on the 4 Fs diet to help with the inflammation and it seems like this is helping a little. I feel lots better since going on it at any rate and that is a very good thing.

I am excited about trying out tDCS in the future...I highly recommend reading the thread on here for it. It's not invasive and is pretty affordable so I think it's definitely worth a shot. Can't wait to discuss this with my doctor on Friday...it has given me renewed hope that I can get myself back to "normal" or at least closer to it.

RSD caused a lot of other issues for me like loss of balance, blurry vision, dizziness, etc and clonidine patches have been a miracle for me in helping to get these under control.

There's also SCS, calmare, blocks, etc...lots of stuff on here about those but I am not super knowledgeable about them.

And this site has been really good for me to. Just being able to discuss different people who really know what it is like to live with this has been very good. I've learned a lot of little tricks to help me function and that have given me a better quality of life. There are some amazing people on here. Welcome...and if you have any questions or even if you just want to chat/vent this is a good place to do it. We're here for you.

Grape seed extract seems to help keep it from spreading. The worst thing for spreading for me is injury and then really bad flares and not treating it.

It seems the key is to avoid all the triggers from stress to fatty foods and sodium nitrite. Keeping my mind off of it and exercise helps. Talking is great for me so I try to get out everyday if I feel up to it. I'm going on 14 years as well but it feels a lot longer.