I think I have it, I know I have it
 

I'm a newbie on here and felt that I could get some insight and advice into what I may have. I'm only 21 and am positive I have complex regional pain syndrome. I have a fear of medical things and have been healthy my whole life so avoided doctors at all costs. About a year ago I fell and broke my right foot. About a week into the injury and me not walking at all I started having weird symptoms. My foot was intensely burning like it was on fire, I just figured it was my foot healing. I didn't walk for 8 weeks and symptoms increased. My skin got all wrinkly like an old womens hand, it turned rashy purple and red, the burning, and extreme coldness. The coldness also started spreading up my right leg to my thigh. When I went to the doctor he was crazy. My foot hadn't healed at all and he insisted on doing surgery on me. I said no. When I told him about all the symptoms he said it was no big deal and I was fine. I went for a second opinion in which I was told I didn't need surgery and that would make me ten times worse. They were heavily concerned about my symptoms claiming they weren't normal but could be CRPS. I got the proper care and after 5 months my foot healed. I have been walking and active ever since but I still have some symptoms. Some have gone away and other have shifted.

I still have coldness which is in my original broken foot and now in my opposite foot and in my hands. I get the burning but its at random and its painful but not unbearable. The burning seems to be able to happen anywhere on my body. I mostly get it in my feet, hands, and abdomen. But if I say hold my hand on my cheek for too long my hand will burn and so will my cheek until I remove the area. I cannot wear shoes all day long because the containment of my feet makes me feet burn. The same with socks and blankets at night. Wind hitting my skin makes it cold. If I do not move for a long period of time areas will get cold or start to burn. Like talking on the phone. After a while the hand holding the phone turns ice cold and stiff, due to lack of movement. Not always but when I shower sometimes the water makes my feet burn. Some days when the weather is bad like wind and rain, my whole body feels weak and tired. I am sluggish and not myself. I just don't feel right. Some nights I feel like I don't sleep well. I toss and turn a lot and seem to require more sleep.

I went to a neurologist who was recommended. He did a full exam but he felt I didn't have CRPS. Well what else could it be? He insisted I had genetic raynauds. I kept telling him this didn't start until my injury. He wanted to stick me and do all tests and I didn't want that. I haven't been back and wont go back to him. I don't know what to do. I think my symptoms have plateaued. I would like to have a firm diagnosis. I am afraid the longer I have this is it going to get worse? I am scared.

Hi!
Welcome to the forum. I reccomend seeing another doctor. I was also misdiagnosed at first and unfortunately missed the window for early treatment. There are many doctors that say the earlier the treatment the more likely a recovery.

Thanks for the response. I think the first main priority was to get my broken bone healed. When that happened then they started focusing on the excess symptoms. I just felt like the neurologist wasn't listening to me and immediately rode off CRPS in general. Like he was insisting it couldn't be that right away. When I do research myself I have all the classic symptoms, just not to the severe magnitude of some people. Like is it common the longer you have it the worse it gets? I'm so young. Should I get diagnosed? Because I can live with the symptoms but they are there.

Hello -

I am sorry about all that you have gone through and so glad the ankle bone has now healed.

A few things to keep in mind as you go forward through recovery while searching for answers... The most important thing regardless of if you have CRPS or not is to keep moving and doing everything you can to distract yourself from the symptoms you are experiencing. If that means taking an extra pair of shoes, socks, flip flops...whatever you can do to help/cope yourself will be as good as anything the doctors can offer. Simple things like soaking in epsom salts and night. Balance rest with activity even if that activity is only simple isometric exercises. Touch the skin or areas of the body that burn with different textures.. start with very soft things and don't push to long or to hard but... do this many times per day. Get into the habit of taking time out of the day to close your eyes and imagine your body moving and doing the things you love without pain, picture your body as it was before your ankle fracture.. really think about each body part and how it moves freely. The more you fill your mind will positive thoughts the better chance you will have at a full recovery. Don't get me wrong.. this is not "in your head" but getting your 'state of mind' in a better place will help your body respond better to healing. At your age you have a much better chance at recovery.. please keep this in the forefront of your mind each day.

Please do not place ice on your ankle and instead use warm soaks with epsom salts or a moist heating pad (not to hot).

If you are having difficulty sleeping a 20 min walk or other form of gentle exercise an hour before bed can help a lot.

In the mean time.. hope to God you don't actually have it, but rather have delayed healing from such a traumatic and slow healing brake! A promising symptom you mentioned above is that your pain/burning is tolerable.. that very promising young one.. very promising.

Thanks for sharing your story, I wish you the best possible outcome and hope the pain your are in fades away swiftly.

Tessa

Thanks so much for the advice. I am definitely going to start soaking my feet. My foot has been healed since January and it is now almost September. So I don't think its a delayed reaction. I think I just have it in a mild form. I consider myself very lucky to have mild symptoms. But they are still there. I commend people on here who struggle with this everyday and suffer. Like I don't want to go through all the testing and doctors visits but I want to be diagnosed so I can ask questions. Will a future injury set it off to be worse? What about having kids, how will the process of being pregnant and all the bodily changes and giving birth affect my body? My parents claims I worry too much about it but I just am more curious. I was perfectly healthy before this. And now I just feel not right all the time. Not horrible just not great.

Your very welcome.

May I recommend not just soaking your feet but also soaking your whole body. 1-2 cups of epsom salts (I prefer the unscented but that is personal preference and either way you will still get the much needed benefits of magnesium) into a warm bath for 20 minutes.

Do please keep in mind that even an ankle sprain can take up to 2 years to fully heal so.. some of your pain can still be from the healing process.

Yes, you are blessed to have tolerable symptoms .. keep seeking but try not to worry about so much into the future as this only causes the body to stress (even when you don't realize it) which isn't good if you do indeed have CRPS. One never knows what tomorrow will bring.. be it CRPS or something else, try as difficult as it may be to focus on today and let tomorrow worry about itself. What I am trying to say is that even if you had a diagnosis today the questions about pregnancy and what may happen with future injuries and really unknown as this disease is very complex and each one of us react very differently. For example - some people do get spread of disease with new injuries or surgical trauma etc., that has not been the case for me even recently enduring a broken ankle a few weeks ago. I do believe that not thinking in that way has helped. The worst thing you can do is fixate on what may come.. with or without the disease being present.

A pain management physician might be a good place for answers.

Hi AMK, I am sorry you are in pain and hope you don't have crps. My ortho, pm dr and neurologist all knew after about four months in that I had crps. I not only had terrible internal pain but outward symptoms too. Shiny skin, long, dark hair growth, purple skin, swelling and immobility of my right wrist and hand and fingers. But as time went on the pain was not only stabbing on the inside, but it was also burning on the outside and my other symptoms went away except for immobility and swelling and redness for the most part. Now I was confirmed with spread to my left hand and feet and stomach. I have swelling, increased hair growth and stiffness, but not as pronounced as my initial rsd site. I also have burning and stabbing pain too. That pain is constant in my hands but only once in a while in my feet. It's a weird condition to have and not every symptom happens to each person. But I hope you don't have crps. If I were you I would get another opinion from someone who knows what crps is. And I never had them stick me with anything. It was just so obvious that I had it so I'm grateful that I didn't get stuck. I heard that is very painful and I'm in enough pain. I hope that you don't have crps and that you find out that you are just healing slowly. I will keep you in my thoughts and hope you feel better soon and that you don't have crps. Take care.

AMK I know this sounds relatively hollow because your world seems turned upside down - but you're absolutely right in considering yourself lucky to have mild symptoms.

That doesn't mean you just chalk it up and deal with it - it means you search for your answers and gradually figure it out yourself by gathering as much information as possible and applying it. Which is what you're doing:)

As far as the future is concerned - visualize it in a positive light, but don't live there. Easier said than done, but worrying about it is part of why the present is what it is. Be what you can now and the future takes care of itself. The past works the same way. Living in the past will compromise you now and later.

I am very much like you in how I view the medical establishment. However, that shouldn't take away from the value medical research or a good doctor can provide. The bottom line is that the placebo effect is a fact - so if your GUT doesn't trust what they're recommending, don't roll the dice and try it - so kudos to you for that.

For what it's worth, so you at least have anecdotal evidence: I've had all kinds of injuries after recovering from RSD - cuts, bruises, pulled muscles, etc - no issues whatsoever. As far as pregnancy goes, there are reports of pregnancy causing remission in some cases. It's certainly not unheard of for someone with RSD to have a child. For a personal report on pregnancy/RSD, Catra has a great thread going on that here: http://neurotalk.psychcentral.com/thread205253.html

All the best to you!