[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!

[deb b]

Hello!

Thanks to everyone who responded or read my introduction. jimking, I wanted to answer the questions you asked in your response. I am sorry your wife has had CRPS for so many years. Sounds like she has a great partner looking out for her! I live in NH and even the slightest changes weather wise makes me miserable. Of course sunshine makes me smile! I haven't found any particular foods to avoid for CRPS but am trying to pinpoint triggers for the Erythromelalgia and perhaps when found, they will help the CRPS too!

I've been through tremendous change over the last 7 years, at times getting some pain relief but neuropathic pain remains an hour to hour issue for me. As I mentioned previously, pain can change so quickly, even going across my kitchen floor. That aside, what has improved over the years is my ability to cope. When first diagnosed and experiencing such horrific pain, I thought many times, I can't do this, I can't cope with this, I don't want to cope with this. But...I, like many others, do get through each hour, each day. Days turned into weeks, weeks into months and before I knew it....years. I was pretty strong before CRPS but it demands attention like nothing I have ever faced. Coping with it allows me to try and focus on something else! Finally, and more important than anything else is that what I have learned from other folks with CRPS is far superior to anything I've learned from a medical professional.

Tough day today as the tops of my feet have recently become affected. My hot frostbite continues too with all the pain descriptors all here know about!

Here are some of the things I do to manage the pain and cope. These are only meant to share. I would love to hear from others about what you do to cope.

************************************************** *********

Calmare (scrambler therapy) was, by far the BEST thing I have done in 7 years! It reduced my pain by 40% and I went into it at a level of 9/10.The only reason I stopped it was because of the Erythromelalgia diagnosis. Although pain remains, using meds that don't make me foggy has been a blessing. Stephen D'Amato, MD and his entire team in West Warwick, Rhode Island are superb! My having to stop Calmare is NOT the norm so please don't let my experience keep folks from looking into it!

Meditation and Hypnosis: nothing like putting myself on a beach in the Caribbean! I see a counselor who teaches folks how to hypnotize themselves. I never believed in meditation. I do now! It's calming effect is lovely.

Laughter: I can't go out much so folks come visit us at home and I still love to laugh! I may not be at the table eating with folks but I am nearby, sitting with my feet up, laughing and joining in as if I was. Laughing is a release and I do cry too. Crying is hard for me to do....don't know why...paying the therapist to work it out with me! I wasn't kidding about going to the basement and screaming. It feels awesome!

Reading and Music...there are a ton of books about pain out there but this one..."Managing Pain Before it Manages You" by Margaret Caudill, MD is excellent. I stay away from other books. I love biographies, thrillers oh, just about anything. I go to bed each night with headphones on and music playing. With music, I go to sleep much faster than without. It's not always lazy meditation music either. It's jazz, rock and roll, indie, instrumental, etc....last night it was Andrew Bird, simply awesome.

Counseling: I tried to tough it out the first year I was diagnosed....that was when I needed help the most! Like anyone dealing with serious illness, my whole life changed! Not being able to work was horrible as was accepting that I WAS sick. Initially, I was terrified that people, friends included would think I was making too much of a minor issue or faking. Once I started showing pictures of my feet to folks, they got it real fast and finally understood. Talking with a Counselor each week allows me to let the facade go, to get emotions out and discussed in hopes of alleviating some of the stress that builds each week. Each session I leave with a plan (not always executed) to focus what energy I do have into meaningful things.

Pool and exercise: Local YMCA, nothing structured. Very difficult to muster the energy to go with the knowledge that pain could flare from walking to car, car to place, etc.....

Meds: I've tried a lot, including Neurontin, Elavil, Nortriptyline, Lyrica, OxyContin, Oxycodone, Baclofen, Tramadol, etc....each worked for different periods of time but eventually either they stopped helping or I stopped them.

Current Meds: Butrans Patch (changed every 6 days and I put a RX. Lotion on prior to placing the patch as I am allergic to the adhesive) Nucynta, Cymbalta, Wellbutrin, Levothyroxine for hypothyroid and Diovan for BP. I know others mange pain without the use of narcotics but for me, they help get pain to a 5-6/10 baseline and help to reduce pain spikes that occur during the day. This is when the Nucynta works well. Less side effects too with Butrans and Nucynta; less groggy, don't feel high and less constipation! I also take a number of supplements.

That's it phew! Thanks for reading if you got this far. I hope in some small way, the things I do to cope will help someone else.

Thankful for finding you guys!

Deb

[89danboy]

Hello , I wanted to let u know I go thru a lot of the same everyday issues you deal with, my rsd was from a fall at work , I wAs a iron worker and fell two stories in 2006, that's how I got rsd. I have a great wife that helps take care of me, she has been a rn for 16 years and just graduated this month and is now a nurse practioner . I also have a dog "roxxy" she is a pitbull mix and she is my everything . She keeps me company on the couch during one of my flare ups. I love her.i have full body rsd ,my body is sensitive to everything.my biggest problem is the inflammation in my body and organs.causes my body to have drastic temp changes from taking a shower or ,trying to vacuum .my body gets cold and I sweat really bad.and it takes a day or two to recover..I don't leave the house much.i encourage my wife to see her friends and family.i don't won't my life to take hers away.i haven't tried calmare therapy yet.ive done ket infusions several times.with some relif here and there.i think I have poor blood circulation that causes a lot of the fatigue. It's nice to here others like you tell there story so others can relate to you.its crazy how our life's have changed from rsd.there isn't a job in the world I could do.one minute you feel ok and the next minute your on the couch for 5 weeks.anyway,I'm glad to meet you and soft hugs .have a great summer

[AZ-Di]

Hi Deb & welcome! but sorry for the reason you need to find this forum!

This is a lovely support group! I haven't posted much lately because I have been so long between nerve blocks (so far they help me a lot).
I can so much relate to how you feel about giving up working before
you're ready & what that does to self esteem. There are just so many
frustrating facets to this monster disease!

I'm glad Calmare therapy did work for you at least for awhile. I went for the
consultation but not proceed. I do not have remission but get relief so far
from the nerve blocks.
Di