My full history is in my first post in the Our Stories thread. In some, things were bad until around mid-November, when things started to get better and the RSD looked to be getting better. But this week, things have gotten worse. My right foot has become very cold all the time instead of only occasionally. I had painted both my right and left toe nails in mid-November when I started mirror therapy. Now, the right foot is less painted than the left - on some toe nails, the polish has rubbed off while on others, it has become lighter. Whenever I put my foot in water (in the shower, foot soaks, etc.), the toenails turn chalky white. Slowly, it's starting to stay. Fuzz from my socks stick to the nails now and they nails are super tender to the touch. I had a brief moment of hyper sensitivity in my right leg. My ankle is growing stiffer and there is a dull burning pain in the ankle. I developed a red mark on my right leg. The skin on my foot has become shiny and is more consistently blotchy. I'm so afraid that all of this means the RSD is spreading and not actually getting better as it appeared to be for a few weeks. I started becoming depressed this week and today fell into a full depression. I can't see my treating doctor until the 17th. I've been able to make it through a lot up until this point, but I'm losing faith that I can handle this if it keeps getting worse and becomes permanent. My RSD first was much milder than many other cases and I felt lucky. It was so mild in fact that two doctors have refused to do nerve blocks on me. I'm so afraid that was a huge mistake that will cost me for the rest of my life. I can't stop thinking about it. I don't really know what to do anymore.

- Does anyone know if my condition is getting worse? Or is it as my PT says - the only way to judge this condition is by pain, which has gotten better, so it's getting better?
- Does anyone have suggestions for warming my foot up? I have tried warm socks, turning up the heat, and as many blankets I can stand. The only thing that has helped is using a heating pad, but it means I can't leave the home or the couch.
- Does anyone have suggestions on how to deal with the painful toenails? They don't want a sock on, but it's vital I keep my foot warm. My choice is either a painful toenail or a painful cold foot. I'd rather have neither.
- Does anyone know what the deal is with nerve blocks? I have read so many sites on this and some seem to treat nerve blocks as the only way to "cure" or put RSD into remission where others seem to treat nerve blocks as one of many options depending on the situation, none of which will necessarily put RSD into remission.

Thank you for your help!

Hi Maygin,

So sorry for the reason you're here. Couple of general comments; hoping some of my experience can help you:

Nerve blocks can provide a temporary respite from the pain. Some respites last longer for some people, some get very limited short term relief, some don't get any relief at all, and some experience complications from the nerve block itself. To me, it's pretty evident that if you take a condition like RSD that is already supremely sensitive to ANYTHING invasive or stressful, nerve blocks are playing with fire. Personally I chose to avoid them in favor of a lot of the things you're already doing. But others have stated they've had success with them. The fact that you haven't proceeded with a series of blocks may actually be a blessing Don't beat yourself up any more on that... you're dealing with more than enough as it is.

Mirror therapy and physical therapy are awesome modalities, especially since you caught this so early. But there is a fine line between pushing too hard and not pushing hard enough. As far as the therapy goes - YOU know your own body better than anybody else, and you don't have accept everything your PTs, or even our doctors, say as gospel. As far as MDs and PTs --- they're supposed to serve as advisors- you're paying them to help YOU heal YOU and get on with your life.

Secondly - metatarsal stress fractures are notoriously slow to heal, and there are all kinds of potential symptoms that can arise from compressed nerves and bloodflow in the foot that mirror RSD, so it's not surprising that you've gotten conflicting diagnoses from different medical professionals (having read your intro on the other thread.) As to whether you "have it" (RSD) or not, continuing pain beyond the norm is the most meaningful barometer. Only you know what the norm is - and that's tough to ascertain with something like a fracture in an area that is constantly weightbearing and indundated with nerve endings.

Third - here's a link to the stuff I did that helped me: http://neurotalk.psychcentral.com/thread205597.html. Take what you like and leave the rest

For what it's worth, I have been in a very similar place to where you are now. Even after I'd started my own aggressive therapy regimen, things hadn't turned around, and actually got worse, and I finally went to the ER fearing spread because I felt completely helpless and didn't know what to do. (It didn't spread, and the RSD completely resolved, and I've been fully recovered for over a year now.) The depression and sense of helplessness were the hardest to overcome. I had to convince myself I was worthy of recovering, if that makes sense... you are worthy I promise you that.

Also - same as you: my RSD foot turned from warm to cold after around 90 days post diagnosis. I think it was partly because of the continued swelling restricting bloodflow, and partly because of the weather change to colder temps.

Lastly and most importantly, your PT is right -- the fact that the pain is REDUCING is a great great great sign

Hope some of this helps!

I have had stellate gang. blocks and they helped slightly but these were over 12yrs ago. I have had a flare-up now. My fingernails are brittle & thin on my RSD arm. Depression plays a HUGE role at least for me! I lost my main support in 2013. I have lost many friends & family. I guess they are tired of hearing about the pain. I am going to a support group next Tues. so I am hoping to meet others. GOOD LUCK! LISAR624

Thank you both for posting. Just being able to reach out to others who understand was really helpful

visioniosiv - thanks for your reply and the link. It motivated me to do more research on vitamins and start trying to cook again. I live by myself and ended up switching to mostly processed food since it was fast. I've learned with CRPS it's all about prioritizing. It's hard for me to de prioritize work and prioritize things I need like home cooked food, but it's too important not to. I have felt a little better, which is making me motivated to keep it up.

I also started seeing a mental health professional at the rehabilitation hospital I'm doing my PT at. It's long over do. I kept pretending I could do it on my own, but this is something I need a little help with.

Thanks all!

Awesome Maygin - that list of stuff I did all came from that - a complete focus on prioritizing for positive motivation. It sounds idyllic and ridiculous but major change always does. Because we're scared.

Oddly enough, it wasn't until I completely surrendered and said, "Welp - I'm completely and utterly ******. How on earth has it come to this? I couldn't have PLANNED things any worse than they are. I can't fix this; I'm not good enough; I surrender." ....

....I was sitting in the ER when I had that thought. And immediate sudden realization hit me like a Mack truck.

I realized that I blamed myself for my pain.

A huge weight was suddenly and unexpectedly lifted, and even more crazy - I started to laugh. It still hurt the exact same - like frozen fiery hell with twitchy lightning bolts thrown in for good measure - but I was somehow no longer identified with it. It was my body's pain, not mine.

That was the turning point. From that moment on I made slow and steady progress until one night I woke up and realized the pain was gone. Not to say I didn't have setbacks along the way - but they had miraculously turned from obstacles into guideposts.

I don't know... maybe it's different for other people. But up to that moment I outwardly blamed doctors, blamed bad luck, blamed God (either for existing, or for not existing), blamed everything I could think of... but in my heart, I realized the truth was that I blamed myself for my pain and for hurting my family. But it was never mine to begin with

Oops I'm sorry about that Chemar - was too literal in the transcription there.

Not specifically about this helpful quote in particular but Vision, I enjoy reading all your helpful responses. Why do you still come back here when you no longer have RSD?

visioniosiv - I'll admit that some of the positive spiritual things your post mentioned weren't things I paid much attention to the first or second time I read your post. But I had this moment yesterday where I realized that I have focused my energy on bending the world around me - getting better socks, seeing the best doctors, etc. but I hadn't taken the time to bend the energy within me. And until I do that - until I can forgive myself - simply bending the world around me won't be enough. I very much blame myself for getting injured, but oddly enough, not for what's happened since. Very early on, before I even knew I had RSD, a friend pointed out that I talk about my foot like its a separate entity, not part of my body. I still talk that way to this day. I blame the nerves for overreacting. But I blame myself for giving them the opportunity to overreact. Anyway, I have decided to more consciously move towards doing mediation and looking at Buddhism. I have wanted to do both for awhile, but never prioritized it and also felt that as a scientist, it likely wasn't for me. But I think now it might be.

I want to thank you for taking the time to respond. I logged on today to post a rant about this condition. I didn't want to rant to my friends on Facebook, so I thought I would reach out here. Every time I feel like I take a step forward, something new pops up, sending me at least a step, if not more back. But this post reminded me that while I can feel angry, and I do need to let it out, I also can breathe, let it go, and keep moving forward. Any new issue doesn't have to hold me back or slow me down. Thank you. I needed this more than words can express.

Sorry for the symptom increase, but I agree with your PT that the gauge is the pain I know Ladies worry about the appearance but if the pain is down call it a win. As for your feet I've got 2 words Bed Buddies or another 2 Hot Booties, they're a super soft material with pockets that have removable packs with buckwheat or some other material that you can microwave then insert & pull the booty on.. while not a perfect answer for mobility they do a great job of warming up cold feet. Oh Just in case they also make Mittens for the hands. Good Luck!

Because I promised myself that I would stay and help as long as it takes if I ever got better. When the RSD was at its worst, I had this fantasy where I cured myself, and was able to come back and "save" everyone with the knowledge I'd gained. (Ego much? Jeez.)

Well, what I learned was that everyone wants saving, but they want it on their own terms. (One more reason different modalities work better for some than others.)

So I'm here for the same reason as everyone else - to support and empathize and share our perpectives so we can learn from each other.

Much of what I found to be personally true contradicts what is commonly accepted in the medical world, so I have learned to temper a fair bit of what I say. People here are experiencing some of the worst pain and fear known to humanity on a constant basis. Insensitivity to that just results in more inflammation, which is the worst thing possible for the condition.

No one wants to hear that RSD is in their head. But it is - just not in the way everyone thinks when they hear that. It's not meant to be heard as an accusation (at least from me) - and it's not as if RSD doesn't exist! The pain is 100% real to the perceiver, and there are obviously a host of measurable symptoms and indicators that go along with the condition that prove its existence to an outside observer.

But as we are gradually starting to rediscover and accept, the mind is in control of the body, not the other way around. (And yes - there are many "fixed" physical parameters, like heredity, or death, for example.)

The question I asked that made the real difference - who controls the mind?

I like reading your posts too cdwall.