[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

[fbodgrl]

Sorry you are here because you have this monster! This is a great group of people.

[deb b]

Originally Posted by fbodgrl

Sorry you are here because you have this monster! This is a great group of people.

Thank-you! Your dog is beautiful! I have two Shelties who are great pals!

[fbodgrl]

Thanks!

He is truly the best dog I've ever had. I grew up with German Shepherd's ( my parents still have them). I got my first Pit bull when my ex boyfriend of 6 1/2 years wanted one. I fell in love with the breed. When we split I got Khan my current boy. He's a rescue and bounced around from home to home and even an animal hoarder whose house caught on fire before I got him at 1 1/2 yrs old.

[RSD ME]

Originally Posted by deb b

Thank-you! Your dog is beautiful! I have two Shelties who are great pals!

Hi Deb and welcome. I'm sorry that you have rsd. This is a great forum to get helpful advice and make compassionate friends. I used to have a sheltie. He was my best friend. Shelties are awesome! Take care and I'm sending gentle hugs your way.

[Jimking]

Sorry you are going through all of this,deb b! RSD effects people differently. You've seen no relief in 7 years, no changes at all? What kind of weather is your region known for? Also, have you noticed effects from foods that you eat? My wife has dealt with RSD for 11 years and her condition eventually changed. There are certain things she can no longer eat such as pork, chocolates etc. When its overcast, rainy it really effects her. She does hang in the basement most of the time. I've installed a Hippa filter and dehumidifier which helps with the air pressure issues, dampness in the basement.

[birchlake]

Hi Deb, and welcome to the forum! So sorry for the circumstances.

Yes, your story is not all that unusual. My CRPS started after a joint fusion in my big toe. Surgeon did everything right; I do not blame him at all; as he feels terrible; I just drew the "short straw" I guess!

But I am doing better than a lot of my friends on this forum and for that, I am thankful. Never know how long it's going to last before a spread, but I do have a very thoughtful daily routine that I follow "religiously" to help me stay the course. And a "meds cocktail" that is always subject to change!!

Thanks for checking in. Good luck to you (and god help us all) and keep us posted!

[alt1268]

Hi
Welcome, your story like many others sounds familiar while portions may be better and portions may be worse then mine. I do recogniE myself in your story. I to work in healthcare and it is extremely depressing to loose your job, your friends and your life as you know it.
I don't know if your religious at all? But god as helped me get through this. To understand that my life is not my plan but his. And his plan is not to let us suffer. So with that said, I believe we met here for a reason just as we meet others on the street for a reason.
Look around the room, use the search feature, ask questions, rant rave we are all friends and for most of us this group is the only safe place where understanding of our disease comes from.
Gentle hugs!

[Brambledog]

Hi Deb

Sounds like you're doing a pretty good job of dealing with the monster....as good as we can anyway... It's a horrible disease, no argument, and all you can do is what you are doing - finding ways to cope, both mentally and physically, with the things it throws at you.

I try to do a patch of time each day when I do gentle exercise like Qi Gong, meditation (Mindfulness) and self-massage to some nice soothing music. Those three things have done more for my pain than anything! I'm glad you have such a range of things you use already, it helps to have a CRPS toolkit to have a go at it with!

There's other things too, like unperfumed epsom salts, a couple of tablespoons in a damp cloth placed on the burning skin really helps me, or some in a warm bath. Epsoms are rich in magnesium, and that is an absolute essential for your body, and something we often don't get enough of. Your skin absorbs the magnesium really well and you can get it as a cream as well. If you haven't tried them already they're definitely worth a go.

Sorry if you know these things already lol, but.... No ice anywhere on your skin, no BP cuffs or blood draws on your affected areas, and steer clear of extremes of temperature on your skin - either high or low - no matter what any physio might say! And keep reading and learning about it from good sites, knowledge is protection from poor healthcare folk who think they know best, but don't know CRPS at all... I'm sure you know that already.

As for the frustration and mental issues that come with this marvellous parcel of goodies you are doing a fab job there already. Keep busy, find things to laugh at, people to talk to, stuff to think about. I'm writing a book, I make jewellery sometimes, I like a jigsaw when my body lets me, and I play too much Minecraft!! Anything to distract. I'm still learning, as I'm a tutor, so I'm studying too. There are so many free courses out there on the web - I've just done one on planetary moons through OpenLearn, and it was free and excellent quality. There are loads of subjects so you can just try something and then stop if it fails to grab your interest!

You're not alone, you're not just your pain or the illnesses you deal with. Never ever forget that. From your texts you are a bright and intelligent woman, with humour and kindness. That's worth a whole lot Hang onto it.

Take good care of yourself, and welcome to a very supportive little group that's seen me through some rough times and been there when sometimes no one else understands

Bram

[eevo61]

I'm sorry your here for the wrong reason,I know we all wish to be on different kind of forum but our reality is live this way.
I know feels bad when there is not support of any kind. I see you know how to work around this beast,I'm glad ,but emotional support sometimes is hard to find ,only rsd suffers understand for real others pain.
I wish you soon get well and don't ever stop fighting,keep the faith,soon we will see a real cure ,we all hope that,blessings from Jesika .
Ps you might already know this site for more rsd info,I will post it just in case,hope helps you,we will help you in the emotional part and sharing our experiences and sure learn from each other.

http://www.rsds.org/index2.html