[deb b]

Hi....so happy to find this and other forums. My RSD journey began in 2007, after "minor" surgery on my right foot. Two weeks after I, according to my Doc, should have been painless, the pain was worse, a buzzing, deep gnawing pain an
with temperature and color changes in my foot. My PT was the first to mention RSD. Huh? Never heard of it and she hoped she was wrong. My Ortho Doc dismissed the idea and me, referring me to Pain Management. From here, my experience is probably no different than many. From 2008-2011, I was told I did not have RSD, I was a slow healer from the surgery, told to be patient and probably had more nerve damage from the air cast I had been in after two more injuries to my foot. I was on various medication cocktails during this time, including high doses of Neurontin, Elavil, OxyContin, Oxycodone, Nortriptyline, and others. I listened and was a good patient, even managing to work through the pain and come home and down my pain meds.

Late 2011, after my second re-injury, I pointed my blue foot out to my PM Doc at one appointment who said "oh no!" you are now showing signs of RSD! No kidding, really? Three failed nerve blocks and my decision not to get a stimulator later, we parted ways. By this time, my left foot was involved as well and the pain, hypersensitivity were just horrific. I quickly went from part time to not working at all in a healthcare organization I had worked in for 32 years and loved. I was totally devastated, my identity gone and I spiraled into deep depression. Days were spent in a chair or sofa in a depression and drug haze. Thankfully, I have a wonderful spouse who refused to give up and found Calmare treatment. Wow! Finally, something to help! I went in with a total bad attitude about it, daring them to change my mind about it being a scam.....won't go into details here but it worked to alleviate my pain by about 40%. I have always had a great relationship with my Internist but she only knew so much. Luckily, I found a Doc in Rhode Island, who along with his team, literally saved my life.

Gradually, Calmare stopped providing relief. The soles of my feet, and hands remained very painful and the hot frostbite, gnawing, buzzing pain had ramped back up. This time, hot, hot pain persisted in a way it never had. I was diagnosed with Erythromelalgia and had to stop Calmare as it does not treat this condition. I found a Neurologist in Boston Mass during this time who agreed with the RSD diagnosis (and the Erythromelalgia one too) but believed I had small nerve fiber polyneuropathy!! Another huh? This was confirmed by biopsy and failed autonomic function testing. Many, many tests later, a cause for the polyneuropathy has not been found. It is "idiopathic" and I am both happy and frustrated about this. No diabetes, lupus, scleroderma, celiac disease, Lyme, sarcoidosis, blood diseases, etc.....I am hypothyroid, on med, probably caused by the weight I gained over the years and take a BP med. Currently, my RSD is still active and the other conditions persist. I have no idea which condition is causing which pain. I can't walk more than a short distance before I am in agony with a temperature change hot or cold and a pain spike. But.. I have found a pain med regime with Butrans patch, Nucynta and other meds that allows me to function enough to have visitors, play with my Shelties or putter around my house. Meditation and hypnosis help too. Like many, my day is spent focused on pain management, trying to do something active and then have a recover day. Life issues are very difficult for me and I continue to struggle with depression and am on meds. Seven years into this madness, there are no signs of remission, my body continues to be in a fire storm every day and I am still taken by surprise every time that how I feel can change for the worse in the blink of an eye! Does this happen to others? I've tried logging the pain but there is no pattern over time.

Many days, I feel like I want to scream (and do in my basement, feels good) and I continue to struggle with many other issues like my spouse having a part of our life separate from mine; out to dinner with friends, as an example, and the things I've lost like work, friends, working in the gardens, travel, etc.....I try and stay positive and concentrate on what I can do, not what I can't but this reality simply sucks. I haven't found anything meaningful to do with my brain and folks try to be helpful but they just don't understand. Even mental health providers I see can't really get it although they are helpful in other ways. I don't really know who I am anymore outside of being in pain and known as a diagnosis.

I would love to hear from others with same or similar experiences, conditions and appreciate learning from them. Also, I have learned a lot of things I am happy to share more about as well. Thanks for reading!

deb