RSD In The Foot Almost Out Of Options.........Susan's story

From: memphiscatwoman2 (Original Message) Sent: 6/24/2006 3:04 AM
On September 19, 2005, I had a senior executive job, was a single mom to a teenager, was an avid tennis player, rollerblader, cyclist; and due to minor pain in my foot had a very minor, routine surgery to remove a Morton's neuroma. Had I known that this minor irritation that wasn't slowing me down would cause RSD, I would never have had the surgery. I didn't even know what RSD was, but I do now. I was very lucky to be diagnosed within a month of the surgery, and was promptly referred to a pain specialist who is very knowledgeable about RSD. The immediate diagnosis was severe RSD in my left foot - and despite prompt aggressive treatment with at least 20 sympathetic and lumbar nerve blocks,I developed significant dystrophy (claw foot) within a month of diagnosis. Doc also prescribed a month of daily 4 - 6 hours of PT, working with a psychologist for pain coping techniques. At the end of the month of treatment, in late December, I was able to put a little weight on my foot, and had progressed to a cane from crutches. The pain hadn't improved, but function had. I then was complying with additional PT on a reduced schedule, and one of the repetitive exercises REALLY hurt. I told the PT, she told me to work through it. Since then, I'm back on the crutches, although I can hobble a little on my heel only in my home. I lost my job, since I was never able to go back to work after the surgery. Luckily, my mom has helped me financially, as well as driving me to my appts., doing my grocery shopping with my food stamps, helping around the house, etc.. She has run out of money, my social security application is still "pending", and I'm losing my house. I already lost my car. I don't know where my daughter & I and my big dogs & cats are going to live, but the pain is so intense that I really can't even think about anything other than the pain. I guess that is a blessing!
In terms of RSD treatment, I'm already on a dose of Lyrica of 900 mg a day, fentanyl patch 75 mics/hour every 48 hrs, Marinol 15 g. a day (this one has helped add to the pain relief from the morphine), morphine 90 mg IR, lunesta 3 g for sleep, cymbalta 90 mg, and probably two others I can't recall. In February, 2006, my doc referred me out for a spinal cord stimulator implant. I had the trial surgery in March, which reduced the pain by about 25% (to a baseline 6 from an during the 3 day trial. The night of the trial surgery I became nauseous from the antibiotic on an empty stomach, started vomiting which hurt horribly due to the wound on my back, was told to go to the ER when I called my doc. They injected me with phentermine & dilaudid for the pain, then my BP dropped through the floor, so they admitted me. I only stayed in the hosp. 24 hours that time. The rest of the trial was good. The doc scheduled the permanent implant surgery for 3/31, but after almost finishing the surgery, the anesthesiologist gave me Narcan (my surgeon yelled at him for doing it, but it was too late) and that apparently threw me into serious drug withdrawal & my entire body was spasming so badly that they aborted the surgery & stapled the wounds shut without the stimulator. The spasms had caused such tissue damage that another attempt wasn't scheduled for 8 weeks. The healing process was long &frustrating, and required a visit to a plastic surgeon to stitch everything shut again after 2 weeks. The long-anticipated implant surgery was done a few weeks ago. Despite several reprogramming attempts after a successful implant surgery, the SCS wasn't helping pain or function. At the two week mark, the wounds suddenly swelled a bunch and got very red. Went to the surgeon, and he said it was infected & had to come out the next day. It was a staph infection that kept me in the hospital for a week on IV antibiotics. I was so hoping that the SCS would help me get back to at least SOME function. It hurts terribly all the time, like everyone else, but hurts so much more when it's lower than my heart. So, I spend all of my time with my foot over the back of the couch & my rear firmly planted on the couch. Like so many others,in addition to not being able to take care of myself, I have severe memory loss, am fighting weight gain, have limited cognitive abilities, & lose words. Talking to people exhausts me,my hands shake a lot and I forget what I'm trying to write, so typing is exhausting,too. I nap a lot, and am blessed that I do fall asleep some during the day,since I have insomnia like so many of you. My foot is deformed, dark purple, and my daughter says she misses her old mom. My good pain days at this point are a 7, many are 8 --9. I've run through all of the treatment options, and I'm praying for a curative treatment. I've heard about the ketamine treatment, but it sounds just as iffy as all of the rest of them. May you all have better luck with treatmennts, and low pain days.

Susan



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From: byrd45 Sent: 6/24/2006 10:40 AM
Hi Susan,
It is great to have you here with us! I am so sorry to read all that you have been through this past year or so. RSD seems to do that to all of us take our normal lives we had away and turn our lives upside down and inside out. I felt so sad when I read your daughter misses her old mom. My boys still miss the old me as I do frequently even though my RSD has been going on since 2001. I don't think I will ever stop missing that Robyn. She was great and active biking and playing ball with them and smiling all the time not in pain all the time. Well unfortuately I guess we have to make the best of the cards we are dealt. I don't understand why I am like this, but I figure if I have to be like this I am going to live the best I can. It is hard mostly everyday don't get me wrong. I get angry sometimes still and depressed too,but I used to wallow in the depression for the first two years and I won't allow that no more. You are under so much stress and that must be hell on your pain levels. I hope they okay your social security application so that will be one big stress behind you. I will keep you and your daughter in my prayers that it will happen soon and that you don't have to lose your house. I hope it comes through soon and keep pushing forward things will get better for you. Come in anytime and post and if you need me I am just a post or email away.
Love,
Robyn


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From: memphiscatwoman2 Sent: 6/24/2006 4:07 PM
Robyn,

Thanks so much for your kind response. It sounds like you and I shared similarly active, fun-filled lives before RSD. I'm sure you spent time then, too, helping others as I did. It's hard to be on the receiving end of things, as well as hard to fathom why we cannot continue to be productive members of society as we were before.
I have read much of your story, and I have to say that I am very impressed with all of your work maintaining this site. You have helped me tremendously in dealing with my "new life" by sharing all of this information here, and maintaining a forum for all of us. Thank you so much for doing this! I know it can't be easy, as it would be impossible for me to do, but it is a real gift to all of us. I look forward to getting to know all of these special people here.

Warm regards & minimal pain days,

Susan


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From: suzy1230 Sent: 7/18/2006 3:21 PM
Hello, My name is Susan too, I dont get online much so I hope by this time that you are feeling much better. I have had RSD since 1993. There are a lot of things that happened before 2004, but thats when I had exhausted all treatment options for heal spurs and there was nothing else to do but have the largest one removed, I lost about 2/3 of my heel, left foot, unfortunately I had a cast on for 6 weeks that I begged to have removed but it didnt happen, when it was removed it was an open would uzing puss and I could see the bone, or what was left of it and was sickened at the sight, I had to have a skin graph but it didnt work, I then had to fight osteomylitis for 17 days of hospital iv and pain that was so bad that all I could do was moan out for help, I couldnt think straight and sisnt have anyone that understood what was going on, there are so many things that happened I could type forever but I get too tired! I am alergic to many many antibiotics and pain meds, morphine, dalodid?, now I have to use fentinol? I am terrified of getting hurt. I also had to have back surgery, thats another story, I know this is doesnt sound helpful but I can relate to you well and I want you to know that I have found that you just have to keep goin and try to use your foot as much as possible asap, it hurts horribly, pray pray pray, find that strength deep inside that still wants to return as close as possible to getting your life back. Water therapy helped me so much because of its weightlessness, regular therapy only agrivated it and did more harm! I know you can do it believe its possible! Hope to hear good news about you quickly! Susan


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From: RSDMINDY Sent: 7/19/2006 3:04 AM
hi so sorry to here your pain. it really took you down fast. I want you to know you can save your home. the goverment has grants (DO NOT HAVE TO PAY BACK SEE BOTTON OF NOTE FOR MONEY) to help us get out a bind. you can use your hands go to gov granTs try hudus keep looking it's out there and it will help get the focus off the bad stuff. i lost the use of hands and now right foot is goingi typewith 1 finger. lotsa type-o. remember THIS TO SHALL PASS!!! EVERYTHING CHANGES ALL THE TIME. PLEASE KNOW I UNDERSTAND THE PAIN KEEPS ME FROM BEING ABLE TO FOCUS OR FUNCTION. I WAKE UP PARALIZED FROM PAIN THOSE ARE THE WORST DAYS. I'M ALL ALONE AND MY FAMILY THINKS IT'S FOR ATTENTION NOT REAL AND I'M LAZY. GOD BLESS YOUR MOM!!! I HOPE I DO NOT SOUND SHORT I HAVE TO KEEP TYPING SHORT CAUSE OF PAIN. I LIVE IN A ONE ROOM APT NOW CAUSE I HAVE GONE THROUGH EVERYTHING I HAD ID GONE BUT MY CAR IT'S OLD AND I USE T TO GET TO dR MOSTLY. I AM APPLYING FOT SEVERAL GRANTS FOR EVERYTHING UNDER THE SUN I CAN FIND RIGHT NOW. YOU CAN GET AS MANY A YOU QUILIFY FOR. I GOT APPROVED FOR ONE OVER NIGHT I HAVE TO CALL THEM BACK TOMARROW CAUSE I CANT REMEMBER WHITCH ONE IT IS BUT IT IS A MINIMUM OF 5 THOUSAND DOLLARS JUST FOR A NIGHT OF PAIN I COULD NOT SLEEP SO I APPLIED FOR GRANTS OVER THE NET. IT'S THROUGH "CAPITAL GRANTS" GOOD LUCK AND GOD BLESS

RSDMINDY


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From: Pacridge Sent: 7/27/2006 1:27 PM
Sorry to hear about your situation. Glad you found this site. In a lot of ways your story and mine are very similar. I too was very active prior to what I now refer to as “the incident.” I’ve struggled with RSD a little longer then you. I injured my foot in 2001. I’ve gone through some fairly trying times since then. Physically, mentally, financially, emotional. The simple fact is RSD effects all aspects of your (our) life. At times I wondered if the medications are worse then the RSD. I too have had the displeasure of withdrawals. I also had the terror of an unintentional OD one night. My Fentynel patch broke open and the gel came into direct contact with my skin. The fact I woke up still amazes me. Your med lists looks like a mirror image of mine. Right down to the Marinol, which I found did little more then make me gain weight. In fact other then your note of napping ( I find I get little or no sleep..ever) and the fact you’re newer to this, we sound like matched case studies.

My advice, for what it worth, keep fighting…never give up. Things do get better. The longer I’ve had this the more I’ve been able to get into a rhythm, sort of a system that works for me. Changing my diet, most recently, has seemed to really improve my overall well being. Will that work for you? For anyone else? I have no idea. But keep trying new methods hopefully you (I almost certain you will) find something that reduces your pain. Medications need not be the only focus of your search.

Your financial situation, of course, is a concern. I nearly lost everything. I had a good paying job in Law Enforcement, was a Parole Officer for 16 years. When I first got hurt I had sick leave which was fine, great even. Didn’t realize how great…until it ran out. I kept thinking this will get better, one of these nerve blocks is going to take and I’ll be back up and running at full steam in no time. Well that didn’t happen. After the sick leave and vacation time ran out so did my income. I filed for SS and applied for disability retirement from my employer. SS, of course, turned me down (several times). Since my injury happened off the job so did my retirement fund. Two attorneys and three years later I now have both. I don’t make what I used to, about 66%, but after of several years of living lean the bills are once again getting paid. Suddenly 66% seems like a small fortune. So I’m even able to put some away each month.

So here too my advice, for what it’s worth, keep fighting. SS acknowledges RSD as a legitimate disability. Keep filing, keep all your med records you’ll prevail at some point. I’m lucky in that my retirement fund has an off the job disability clause (though getting them to adhere to it was no small feat). Your situation may not include such. But you may find you’re able to regain some income through the courts. Where did this happen? Contact an attorney. All you have to loose is time. If you are indeed like me time is the one thing you have plenty of.

Good luck,

Pac



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From: byrd45 Sent: 8/4/2006 12:22 PM
Hi Susan,
I am so sorry I didn't see this before now! Thank you so much! What a nice thing to say and it meant alot to me when I read it today! I've found that there are many ways to be useful and enjoy pushing the envelope a bit. This disease makes you feel like you are not useful anymore I know I have felt that way before but it just isn't true. We are all still special in our own ways and even RSD can't take that away from us.
Love,
Robyn