It's interesting how you talk about bullying affecting your life. I was bullied as well that started from second grade (year I received glasses) up until middle school when I was cornered after school, they knocked my glasses off and I popped the alpha bully in the mouth in front of his friend. It stopped after that.

With regards to CRPS, I can understand the feelings that live inside your head. The isolation, self-doubt, will this get worse, the fear, despair, and the emotional rollercoaster of feelings of this spreading. Looking normal on the outside without anyone really realizing what battle it is to live with this complex disorder every second of one's life. I too have have a long multiple decade bout but am only 43. I wonder how life will be in my 60's and am quite concerned to be honest.

I am not at the point of walking apparatus, but we went to Disneyland mid-June and I had the option of renting a scooter. I fought it and ended up walking nearly 12 miles in two days. My family was impressed but I suffered dearly for the decision to be tough rather than what I saw as a pride move than doing what was right for me. I too have self-image problems and try to protect how I view myself rather than people judge. I skipped the scooter and paid dearly for over a week in an uncontrollable flare-up.

It's easy for people to tell you to do something if it makes your life easier, the decision to do so is to struggle with the mental game. In my opinion, just being open with your family and friends may be helpful. Some understanding goes a long way. I've lost many friends over the years due to CRPS, and can sympathize that it is easier to talk to strangers rather than friends about CRPS. My boss told me earlier this year that it upsets her because she can't do anything for me. That hurt me because I want to be at work, but now when I flare-up I normally use the intermittent FMLA to shield my coworkers from the rollercoaster of pain that I experience rather than have people pity or have to ignore my symptoms. The first day is the build-up but the oven timer resetting can take days. I never use FMLA on the first day and some may have to see things they don't want to. Bothers me and I do the best I can at work, but I see her point, just sucks. Work keeps the mind busy. It's when I relax that everything goes sideways. Take advantage of the good days, but my life is heavily weighted towards bad days. I don't know.

You need to do what is best for you in the end. If a scooter, wheelchair, walker, etc. helps, then do your due diligence and research what you need/want. Look at the dimensions of the product. I know that sounds shallow because it always comes down to money, insurance, and others making decisions that they don't understand. I don't know your financial situation and am not prying but I wonder if there are grants for medical equipment.

I too find that even typing out thoughts and trying to help others on Mayo Connect feels as if a community comes together to share and seek knowledge and experiences which gains perspectives and voicing opinions helps soothe the soul.

Personally, the way I've used CRPS to explain things to people who are close to me, and even doctors, is keeping a photo journal when it flare's up. Just having photos to describe what is happening is helpful. I don't go too deep with friends. They know I had an oilfield accident and my knee is the main problem but mechanically it's been fixed as best it can be. Other's have asked if my back is bothering me because of the way I squirm in a chair when a flare-up is near. My back is secondary issue but likely is related due to a number of factors like slipping inside huge CNC machines, or tripping down some stairs thanks to a hyper puppy, and the original injury too. The other issue outside of the traumatic injury that developed that causes the most trouble, CRPS and that is too difficult to explain with real clarity because even the medical community struggles with it, let alone the general public who can't imagine a level of pain such as that. Explaining the McGill pain scale is where I notice that is what changes relationships with friends, a shift in wanting to explain to their reaction. I don't do it anymore unless asked how bad it is.

Sorry to ramble.

@bebold Hello there. If I had a magic wand, I'd pouf you to Mayo Clinic Pain Rehabilitation Center... where some people begin in a wheelchair but leave on foot. PRC offers so much physical and behavioral therapies that would greatly benefit you based on what I've gathered from your post. Oh boy, if only it were that easy, my wand would be ready!

Thank you for sharing your struggles and inner most feelings. At the end of the day it's all about you, your needs. Noone should live rent free in your head. You are the one that matters and you gotta do what's best for you. If that means a wheelchair then so be it. Make sure you look GOOD in that wheelchair and let 'em talk. 😉