Hello Everyone,

I am new to the site, but definitely not new to the beast we all know as RSD/CRSP. My life changed a little over 3 years ago when I had a fall down a flight of stairs injuring my right great toe. Like most nurses I didn't seek medical attention right away; I thought it was just a stubbed toe. Six months into it I noticed I still could not wear any shoes other than my work shoes and only those I could slide my feet in; my foot also had this bone growth on top. I consulted one of the surgeons in my department (I am an operating room nurse); she told me she that I had turf toe. Turf toe is sprain of the joint in the right great toe usually in foot ball. I did indeed have this and had to wear a boot for some time. The however did not fix the problem, so I was placed in a short leg case for a month. After the month was over I was taken to the operating room to remove what was bone spurs and a bunion that had grown on the anterior portion of my foot from the joint being stiff. Now the fun begins; the surgery miraculously got rid of the pain I was feeling, but not oddly a few weeks post-op I begin to have numbness, swelling and sensitivity to touch. My foot just wasn't getting any better and it was getting close to time to go back to work. I had all the x-rays, EMG's, Lumbar studies to see if it was my back; you name it. I started noticing that my foot would change colors red then blue and the wind would even hurt; I begin to think something is really wrong here. Finally one afternoon while I painfully hopped along at work after being forced to come back or be fired one of the Anesthesiologist with a history of pain management asked to see my foot and I showed her; she then wrote three letters on a piece of paper and told me to go look this up and come back to me. All I can say am I sat in front of the computer screen that night crying because I said finally I have an answer. I took that piece of paper to my doctor and my RSD journey began. I must say it has not been fun now that I have a diagnosis in had how do we treat it. I have yet to find anything that helps me. I have done the blocks; they helped for a while. I can't take a whole lot of meds and work too. The work thing is a whole other story I am now down to 2 days a week and barely can stand a whole 8 hour shift. Oh did I mention the RSD is now in both my feet, legs, hands, right arm and scapula; yeah it’s moving fast. I don't know if it is because I refuse to take it easy or what. Well that's it for now if anyone can offer advice as for as it goes for treatment I would really appreciate it. Thanks in advance.

Welcome. I am so sorry to hear about what you have been going through. RSD is just such a horrible thing and when you have not been able to get treatments that help get the pain under control it is just a never ending cycle of badness.

Other than the blocks...what other things have you tried? Have you done physical therapy? What sorts of medications have you tried and why does work limit your ability to take them...is it because it affects your ability to function? How about heat therapies or a TENS unit? The Hooshmand 4 F's diet? There are lots of little things that many of us use to help us overcome this thing and not let it ruin our lives. I've gotten so many good suggestions from people on here (even little things like using oven mitts to get things out of the freezer so I don't hurt my hands with the cold).

This is really a great resource and there are lots of supportive people here whether you have questions or just need to vent.

Good luck and I really hope that you are able to get some relief soon.

Sorry for you as well.

Do you now have a good neurologist or doctor who knows about rsd?

That's very important, other wise you can become a test dummy..

Hope you improve!

Pete
asb

NW, welcome to neurotalk. This has been a great site and full of information for me. It is also a great site to rant, rave, cry, etc. we are all going through or been through the same things at one time or another.
I am sorry to hear you are to a point of having to give up a career in the OR. I know how that feels being I was a MSU nurse. I have not worked now in almost a year and it stinks. I have been looking but everyone says I am over qualified.
Any way. Welcome! :welcome _sign:

Welcome to the forum! WOW; another toe story!

Instead of reinventing the wheel, here is a link to my "introduction" and my great toe story! And some others too.

http://neurotalk.psychcentral.com/thread114655.html

My story is amazingly similar to yours.

catra121, I have been on Neurontin, but it made my migraines worst. I tried Lyrica, but it made me too sleepy and did not help my pain. I have had several sympathetic blocks that helped and also a Marcaine epidural infusion. I do have a TENS unit at home. I had physical therapy up until my insurance stop paying for it; I still try to do somethings on my own. I have used Ketamine/Lidocaine creams; no relief. I was prescribed cymbalta, but it did not help my pain or depression. I am currently on Zanaflex, Zipsor, Hydrocodone and Prozac. I also take other meds for my chronic migraines. I do have a neurologist, but he does not listen to me he just writes out a prescription; I'm not sure he knows much about my condition. I am in the process of searching for a new physician.

I'm so sorry...definitely sounds like you are going through a rough period. Definitely sounds like you need a new physician to manage your care, and I hope that you are able to find a good one soon. Until I was able to find the right doctor who was able to help me I just felt like I was stuck in this endless cycle of pain that just got worse and worse while I lost more and more function.

The TENS unit that you have...is it a portable one that you could wear while walking? The one that I was given is portable and I hook it onto my pocket and run the wires under my clothes. This way I am able to get the benefits of it to sort of offset the pain that is increased by the activity of walking. I don't think I would have been able to get to the point I am at now if it were not for this. Not sure how much relief you get from a TENS unit, though. The portable one I have doesn't give me as much relief as I got from the treatments with the big machines at physical therapy...but it is enough to get my pain level down to around 5 (at least before I aggravate it with walking...then it starts to creep up over time).

I had physical therapy at home and I did that until I had used up all my insurance allowed visits. The good thing about having it at home was that I was given a list of exercises to do each and every day...and they are all things that I can do in my house without any extra equipment. In the beginning I made a checklist of all the exercises and the days of the week and my goal was to have 2 check marks in each box every day for all the exercises. When the therapist was there I obviously did them all in one shot...but on my days when I didn't have therapy I was able to spread them out throughout the day and just checked them off as I did them. I don't need to use the checklist anymore, but I do have a routine for doing all of my exercises every day...regardless of whether I feel like it or not. My therapist was wonderful and teaching me the progression of all the exercises. If I am having a bad flare, then I will revert back to some of the earlier exercises but I still do them. Even though I am out of visits, I still continue with the physical therapy ever day and I have seen so much progress in my function over the past 6 months that I cannot imagine NOT doing these exercises every day. I think that physical therapist saved my life because she gave me back that quality of life.

I find that there really isn't any ONE thing that by itself works to help me with my pain. It is more about having a routine and a bunch of small things that all help a little and figuring out how to use those things together to make life more bearable, including coping strategies to help me get through the worst pain. Here's some things that I do that help...maybe there will be something in here that you haven't tried that could help you manage the pain a little better.

I start my day with a warm bath, followed by a 10 minute treatment with an ultrasound machine. After that I usually put on my TENS unit, though I don't normally turn it on right away because the bath and ultrasound are enough to keep the pain around a 6-7 by themselves. I follow the 4 F's diet and I will usually make myself a good breakfast. After breakfast I will turn the TENS unit on and do some exercises.

If I know that I am going to go outside, then I will put a heating pad or patch on my ankle and neck (I have RSD in my upper body too) to protect me from cold air and to provide me with additional relief (because heat helps reduce my pain in my RSD areas). I have a microwaveable heating pad that I normally use...but if my pain level is already pretty high then I will use the disposable heat patches instead as they are very light weight and still provide enough heat to be beneficial. I have spent a while trying to find clothes that can provide warmth without weight and I have fallen in love with Columbia Omni Heat base layer clothing. It has metallic lining in it that reflects your own body heat and that has helped protect me from the cold without having to really bulk up and wear a lot of layers (which can aggravate the pain).

I only have a couple of pairs of shoes that I can wear because of the pain...nothing special but just ones that do not put weight or pressure on the most sensitive and painful areas on my RSD ankle. I work the PT exercises in throughout the day.

I have RSD in my hands and arms as well, and my physical therapist told me that doing activities with my hands that required precision would be good therapy for me. I love to cross stitch and do puzzles so those have worked out perfectly for me. They are painful activities now that I have the RSD in my hands, but since they are things that I enjoy I am able to push through that pain and the function in my hands has gotten much better over time. I still can't do either of those things for long periods...but even just doing them for a few minutes here and there is good for me. I also love to read but the RSD has unfortunately taken away my ability to focus on things like I used to. So instead I listen to audiobooks and I find that escaping into good books this way is a great coping mechanism for me. I am bothered by sounds and vibrations, so when there are loud noises that I have no control over I put in my headphones and listen to music and that seems to help (thanks so much to lit love for this recommendation).

I also try to make sure that when I sit down that I do not let myself sit for long periods of time. I don't necessarily have to get up and do an exercise...sometimes it's just a small thing like getting up to get a glass of water, to let the dog out, to grab a snack, etc. If I am having a particularly bad flare where I feel like I cannot get up and walk because of the pain, I will do some of the ankle exercises I learned when I was stuck in a wheelchair so that I am still moving. I have noticed that if I do not move my RSD affected limbs for a period of time they begin to hurt worse and it makes moving harder and then it's just sort of a vicious cycle. I know I have to alternate between moving and resting, so I try to balance those two things throughout the day.

Also...because heat is something that I find helpful...I have a space heater that I use when I will be in one room for a while. I like it because I can take off the clothing on my RSD areas and get the benefit of the heat without having anything touching me. I also find it helpful during the summer when other people in the house have set the AC cooler than I like it...I can have the space heater on to make sure that the area I am in is warmer so I don't have to be all bundled up.

As I mentioned before...cold is VERY bad for me and causes the most intense pain in my RSD areas. I have gloves that I wear whenever I might be exposed to cold air or a breeze...regardless of whether it is summer of winter. AC is just as bad as cold temps outside for me. So I make sure that I put on my gloves whenever I need something out of the freezer, if I am answering the front door, if I am letting the dog out, if I go out anywhere, etc. Same goes with wearing a scarf...my neck is exptremely sensitive and I need to make sure that it is covered. The fabric touching it hurts (same with the gloves) but compared to the pain of cold air it is something I can live with. This is why I will put a heating patch on my neck if I am going to be outside during the winter or indoors in the AC during the summer...the heat offsets the pain of the fabric touching my neck which in turn offsets the pain I would feel if my neck were exposed to the elements.

I find that with RSD it is often about figuring out what is the lesser of two evils and balancing those things out throughout the day...every day. RSD is such a fight, each and every day, just to live our lives. These are most of the things that I do to help me with the pain. They aren't treatments...but they are all a bunch of small things that add up to quality of life that I would not have without them. I am a firm believer in not worrying about the things that you cannot control and focus on the things you can. I cannot control the weather, but I can control how I choose to cope with it. Another good quote that I like is: Think of the solution, not the problem. When you focus just on the triggers themselves for the pain then you can go mad (been there), instead you need to focus on the things you can do to cope with or avoid those triggers.

I know different things work for different people, so many of these things may not work for you. But I always think it is worth sharing because I learned many of these things from other board members over the past couple years. Little things here and there can make such a big difference once they are all put together. I know we rely on doctors for treatment of this condition, and properly managing the symptoms of RSD is what makes all these other things possible, but there is no miracle cure (yet) for RSD...so we have to do our best to fight for the best life we can possibly have. You sound like a fighter, so I have no doubt that you will do everything in your power to fight this condition and keep/get back your quality of life. Definitely use this board as a resource to give you more weapons to fight your battle. Lots of people on here have experience with various treatments and hopefully you will find one that will work for you. I would recommend reading the thread about the tDCS...that is something that I am very interested in trying and might be something that you could discuss with your doctors.

I just want to post to you and say welcome again to NT. Catras' response to you was a good post about RSD. I am sorry you are suffering with that miserable condition. I would just want to add one thing. I would go seek another opinion, and a better course of treatment with a doctor who knows more about RSD that your current physician. There are other people on this site, perhaps even in your state, that have some good outcomes with change of physician, a neurologist who specializes and knows about RSD. I wouldn't give up seeking a solution, until you get to the place that you have a better quality of life. You sound like a real fighter, and I agree with some of the other posts that you need to go for that quality of life. It is no fun when most of your daily activities and work is taken from you, or that it becomes so painful you cannot continue on. I sure hope you get a better resolution. I hope you have the best possible outcome. ginnie