Hello Every One!

I will try to keep this as short and sweet as possible, but I'm incredibly long winded so I doubt that will happen! Let me introduce myself and just tell you a little overview of my CRPS story. My name is Courtney and I am 33 years old. I first developed my symptoms about 2 years ago, at the end of July, 2012. I was an avid athlete. I ran or swam nearly every day, I was on many athletic teams with my friends (softball, kickball, volleyball, dodgeball), I was active in some way practically every day whether it be zumba, dancing, aerobics, or somethings else. I loved to move. Towards the end of July I started to have a lot of pain in my right foot and ankle, but I had been diagnosed with Lupus when I was 20, so I had had a lot of experience with "mystery pain" and I often just worked through it. I had learned to just not complain about my chronic pain because there wasn't much they could do for me and being active was the best medicine for me. By the time the first week of August had rolled around I couldn't put any weight on my foot at all so I knew it was time to see the doctor. At first the doctor thought it might be a stress fracture, which made sense given all the running I was doing. The x-rays and MRI's however showed nothing and the pain kept getting extensively worse.

Fast forward to February of 2013 and my right foot is still in an orthopedic boot (had been that whole time) and the pain has increased to the point that I can't walk the few steps from the couch to the bathroom without being in screaming agony. My foot is swollen, constantly changing colors, very sensitive to touch and water, the skin and hair is changing. I have by this time seen several doctors and still do not have a diagnosis. The pain is incredibly intense and keeping me up at night. Finally I was diagnosed with CRPS. Looking back it seems like a no-brainer. Unfortunately, too much time had passed for many of the treatments to do much good, plus the therapists had been using ice on my foot from the beginning (even though it was excruciatingly painful). The doctors that diagnosed me did not have the best bedside manors... They basically told me I would be crippled for life, there was no hope for me, and that I may face amputation down the road. The doctors also weren't that knowledgeable about CRPS in general.

I also went through an extremely high stress period during this time. My then fiance heard my diagnosis, cheated on me, and then left me for the other woman because he couldn't handle "being with a cripple". (I guess he wasn't ready for the "in sickness and health" thing) That same week (while I was at my parents recuperating) my house was broken into and everything not nailed down was stolen. And then later that month I was forced to leave nursing school even though I had a 4.0 average, because it had just gotten to be overwhelming for me. We all know that stress can exacerbate CRPS and I really think that dealing with such an extreme amount of stress during my diagnosis and while I was trying to come to grips with everything just made my condition so much worse.

In the beginning I was not very knowledgeable about my condition. I thought I was, but I wasn't. I trusted my doctors when I shouldn't have. I believed them when I shouldn't have. In May of 2013, my doctors offered me a Spinal Cord Stimulator, telling me that it was my last treatment option for any relief. I should have done much more research. I thought I had done my homework, but I hadn't. I had the SCS implanted in September of 2013. At first I really thought it was helping, but then my CRPS started to spread. I think the surgery to implant the SCS is what caused my CRPS to spread. My CRPS is now in both lower extremities from the hips down and in both hands and forearms. It also sometimes is present in my throat and neck area as well as my lower back and abdomen. In just the last few weeks I have been having the burning pain and sensitivity to the water in my upper back. My stimulator doesn't even work anymore. I will never have it removed.

I am still looking for a better doctor to treat my CRPS, but every doctor I have tried to see has declined to treat me because of my "complicated case". They have all confirmed my CRPS, but nobody wants to take on my case bc it is too much work for them. I not only have all the typical CRPS symptoms, but I also have severe nausea and vomiting that is present on a near daily basis. I strongly suspect this is related to the CRPS and have even brought my doctors several peer-reviewed articles that suggest these symptoms could be the result of CRPS being systemic in nature. I have a strong suspicion these are being thrown in the trash as soon as I leave. They just send me to a GI doctor (who by the way has never heard of CRPS), who as soon as I tell him these concerns says "you should have told this to your neurologist"...hmmm

In positive news, exactly a week after my back surgery I met the man of my dreams. He has never seen me as a disability. He thinks I am the bravest, strongest woman he has ever met. We just moved in together this week and he takes such great care of me. I can finally rest!

I am looking forward to getting to know everybody on here and hopefully we can all help each other out! I am no longer working (I am in the process of applying for disability) so I find I spend most of my good days on the computer. And well, I find if I have a bad day I would rather vent to someone who truly understands than to the people who try so hard to understand but can't... those people need a break every once in a while! ;-)

Gentle Hugs!
Courtney

Hello!

I'm Chase. I was diagnosed with RSD back in autumn 2010, stemming most likely from a surgery back in 2003. I'm 27 now and between neurologists, so I'm pretty frustrated. I am a trans man in Philadelphia (Pa, USA) and for me, testosterone helped with the secondary symptoms of the RSD a lot - making things manageable for a while. I work full time at a non-profit and stay pretty active - yoga, activism, community organizing, playing with my dog.

I am not currently on any medications for RSD other than lidocaine and you can probably imagine what a problem that is. My old neuro cycled me through a variety of neuro meds - lyrica, gabapentin, cymbalta, tramadol - and mostly they left me still in pain but as a zombie. (I tried cymbalta again in the spring of this year and basically slept through the entirety of my goddaughter's vist - unacceptable.) I had a neurologist who was willing to work with me, but he left the practice and I was landed with a guy who is a neurogeneticist and just shunted me off to a pain specialist.

I haven't made an appointment with the pain specialist (though I do have one with another neuro over at UPenn Hospital in September) because while I am avidly concerned about my pain levels, I also need to be able to function at capacity. Not working isn't an option for me (I do not have any kind of familial support nor anyone to fall back on) and the regimens that appear to be recommended seem to assume that I can go without that. Additionally, the non-paid work - organizing and activism - are even more important to me, psychologically and emotionally - than my paid work.

On the other hand, my RSD has progressed to be hemispheric - my whole left side is affected, with the skin issues and even in my gums. Every day is a struggle, but the drugs only seem to make the struggle worse. I was always in just as much pain (except for the lidocaine patches) but I wasn't able to focus or do anything. (My favorite coping mechanism for pain is to lose myself in something intrinsicly important or interesting.) I really have trouble with the idea of giving anything up just because my body isn't working "properly."

Hi Courtney, Welcome! Sorry you are struggling so much. You have come to the right place. Lots of good people here who are willing to give support.-lottie

I don't think any of us intentionally gave up anything or don't work because it is some kind of better option. I'm single, live alone, etc and have not worked since 9/11 and am still fighting for my SSDI.

IMO you have to find the right combination of medication to make you more comfortable. Usually that means you have to give a little and deal with the side effects. There are some more natural/herbal supplements, etc. That people have used.

Thank you Lottie! That means a lot to me! I had a really positive meeting with a disability doctor on Friday who thought my case was pretty cut and dry (but also said she didn't make any final decisions) so maybe things are looking up for me!

Courtney

Chase,

I am Courtney and also new to this site. I admire your desire to keep working. I continued working in a very high stress environment for some time after my CRPS started. I completely understand exactly where you are coming from about not wanting to be a zombie. I didn't want to give up working. I was alone for a long time. I was living alone and worried about how I would make ends meet if I gave up my income. I had already used up my savings on my healthcare to date, I didn't have any left over. I did have family, but didn't feel like I could burden them. My sister was already on disability and living with them and my dad had just been diagnosed with cancer. While my circumstances aren't they same as yours and I cannot ever profess that I know what you are going through, I do know what it is like to feel like you have no other options but to continue on working when you have this "monster" constantly lurking around your life.

But the funny thing is, stopping work has single-handedly been the best thing for my CRPS hands down.

And the decision was made for me. By my bosses and my parents behind my back and together because I was too stubborn to do it myself. I was too scared to give up work. I had no idea how I would support myself. But it has worked out. But I am not going to lie, I know my situation is not the same as yours.

I know the reason my stopping work has so dramatically helped my symptoms is because I worked in a very high stress industry and with an especially high stress moronic company within that industry. The mortgage industry is very volatile and full of deadlines and screaming customers, and screaming realtors, and screaming loan officers, and screaming underwriters, and screaming insurance agents, and screaming title companies, and I think you get my drift. It is also an industry where people expect processors (that is what I did) to work literally any hour of the day or night. I would have weeks where I would work 65 hours easy, but I would also have weeks where I would work 10 or 15 hours a week. It was feast or famine, which was also very stressful since I was paid by the loan. And it wasn't only the actual stress from the job, but the stress from knowing eventually I wouldn't be able to keep it. I knew that my health was deteriorating to the point that someday I wouldn't be able to work. Denying that would just have been pointless, but I was going to put it off for as long as possible. I was hoping years, like 5 or 10. I was constantly worried that people were plotting to get rid of me. (turns out I was kind of right, just wrong about their motives and who the people were ) I was always nervous about money and paying my medical bills. I was constantly stressed out and constantly in pain.

I don't know about you, but stress really exacerbates my pain significantly. Like when I am in a stressful situation I can feel my pain rising equally with my stress. Now that I have removed that stress from my life, I feel so much better! I mean I still have pain of course and I still have my bad days, but everyone around me comments on how much better I am now and how more relaxed I am. I just handle my pain better now. I doesn't bother me as much, if that's possible. I mean, I still have stress. There are still a few major stressors in my life like filing for disability, my moron doctors, my not so understanding mom, and my dad's cancer. But honestly removing that major one has made a huge difference in my life.

I am not trying to tell you that you are making a bad decision at all. I am not in your shoes. I just wanted to give you a different perspective. If I had known what a difference it would make in my health I would have made the switch much earlier and I wouldn't have spent so long agonizing over it in secret.

Also, if you gave up your work that doesn't mean you would have to give up your volunteer work or activism. If you were applying for disability you may want to put it on hold for a short while just during that period(just so they don't say, "well you are well enough to do that..."), but I think it would be a positive thing to stay active in your community.

Anyways, I didn't mean to preach to you. I honestly find it amazing that you are able to do all that you do! I can't believe that you work full time and volunteer and do everything else that you do! I am in awe of you! I remember what it was like to be in my 20's and have energy once!

Good luck to you in finding a doctor/treatment method that doesn't make you a zombie because I really do hope you get to keep on enjoying your full life!!!

Courtney

Hey Courtney.

I read your intro and posts and man - what a tough run. I do appreciate your long-windedness though. You're very well spoken

I went through some very similar transitions as you, going from being highly active and focused on professional success, to not being able to walk, (or work, or sleep.)

As I look back - and this is one of the things that drew me to post --- Before CRPS/RSD, on the physical side of things I was SO active that it just piled on top of the rest of the stress I'd accumulated. I thought the activity was counterbalancing my existing work/life stress - brrrnnt. It was further weakening an immune system already on overload.

In truth I had lost all perspective of what is important. It ain't a promotion, it ain't a diploma, it ain't any kind of material success. It ain't even reputation. It's character. Only YOU really know you As for me, I was selfish for most of my life - and completely ignorant to that fact - and I justified it to myself that it was for the benefit of my family.

I got better by gradually unwinding and releasing all the sources of stress I had compiled over the years. This in itself sounds selfish, because I dedicated 100% of my time to healing, research, rehab, and meditation. But my family let me do what I needed to do, and I am forever grateful. I got out of the boot, desensitized my leg, and painstakingly learned to walk again. Here's a link to the list of things I did that I believe helped me - maybe one or two of them will help you. http://neurotalk.psychcentral.com/thread205597.html

You have an awesome guy supporting you. And you've already begun making the time for yourself to heal by eliminating as many of the major stresses that you can. And you're still really young, no matter what you think:P

On the medical side - I was fortunate and made the right choice for me early on - and elected not to go through with the further invasive procedures recommended. Doctors are the right choice for some, and not so for others. You're further along than I was in that regard, but I believe anything that can be done, can also be undone. Time is the main variable.

I know some of this comes off as preachy and I'm sorry - I just want to help. You are friggin' tough and we're lucky to have you here. All the best.

When you say waiting three years for Ketamine? Do you mean Ketamine pills or infusion?

I've had an infusion in Boston MA, Newton Wellesley Hospital, amazing doctor. Dr. Paul Satwicz. Saved my life. Finally diagnosised my RSD and really cared.
Also, compounding pharmacy can make oral ketamine, (either didn't help)

Have you tried oxygen chamber? Heard good things also spinal cord stimulator? LOVE MINE. but only does my left arm and now it's spread. They have a neuro stimulator?

Feel your pain and frustration. The medical community does not have a clue and if your body looked like it felt I think you'd get much more attention and willingness to do something. My arm look like an arm but feels cut open and on fire.

No one gets it but others with the same thing
Good Luck

I am 19 years old, and I was diagnosed with RSD on May 22, 2014. The day before Easter April 18, 2014. I was at work, I sat down at break time, and when it was time to get up and go back to work. I collapsed, so I got back up (pretty embarrassed) so I tried again, and fell again. It felt as if there was no heel bone in my foot. Thankfully it was closing time, so shortly after that I headed to my car and went home. When I got home I tried to get out of my car thinking, "it was probably just a one time thing, i'll be fine now." Boy was I wrong, I couldn't make it any further than the door of my car. So, I called my mom to come help me get inside, I told her I would sleep it off then we would go to the hospital after all the Easter festivities were over. By this time I had my walking boot (which I had used from 3 previous surgeries on the same foot) and my crutches, my foot was swollen like a sausage and looked bruised, and all sorts of weird colors. And the pain was so bad I couldn't sleep, for weeks, I couldn't sleep.

When we got to the ER Easter morning, they ran X-rays and took blood.. the normal work up. They told me I had a sprained ankle. LOL I've had plenty of sprained ankles, this wasn't a sprained ankle.

I then went to my foot doctor, whom I have had quite a few surgeries with... When I was younger I had grown too fast, so my muscles and bones didn't have time to catch up with each other. So I had to have reconstructive surgery on both feet. To fix my bunion, draw an arch, and fix my soulous muscle.) He ordered me to get a bone scan, MRI on my foot, leg, knee, and lumbar.

After all the tests came back negative, I was sent to a local neurologist in Lima, Dr. Kuhlman. Dr. Kuhlman was concerned by the amount of pain I was in.. You know how they ask you, " Rate your pain on a level from 1-10" in my mind I'm thinking uhhhh 15!!! He ran an EMG from my toes to below my knee, and I'm sure all of you other RSD patients know those are just AWFUL.. after a little talking he then looked at my mom and I and told us he thinks it's best if we go somewhere bigger, like OSU Medical or Cleveland Clinic. So when we walked out of the office we made an appointment for the 22 of May at the Cleveland Clinic. He also prescribed some pain medicine to help this God awful pain syndrome.

May 22, 2014 we arrived at the Cleveland Clinic to get this all straightened out. We got there around 7am. My appointment was at 7:!5. After our first initial consultation with the doctor, she wanted to run another EMG. They had their very own wing of rooms designated for these EMG's. I will never forget this day.. Because the man who did my EMG started at my foot, and went all the way up to my lower back. When I say it was the most awful hour or so of my life. The doctor struggled to keep my foot at the right temperature for the first part of the test, so we kept putting my leg into warm water to keep it at normal temperature.

After the EMG was done we went to another wing of the hospital for a Sweat
Test. Which was pretty cool actually, if any of you have had one you will know what i'm talking about. But for those of you who don't.. They put these sensors, the first part was to make my feet sweat. And the second was to draw the sweat off. It was actually really cool.

The tests results couldn't be given back that day because I guess the sweat test takes some time to read. By time we left the hospital, it was around 5 or so. She gave me a prescription of amitripilyne (or however you spell it) ... I took the medicine for about four weeks, and yet had no relief. She then told me to go to a pain management doctor. Either locally or there at the Cleveland Clinic. But since we live near Lima, we decided to try to go locally.

I started desensitation therapy for the INSANE sensitivity, and physical therapy because I had lost all movement of my foot during the month from hell. The therapies helped tremendously with my sensitivity and range of motion.

The next step was to find a pain management doctor. So, I am currently seeing Dr. Hogan in Lima. We had a consultation with him and he decided we would try to do some nerve blocks to try to make the RSD lay dormant. I was scared, but also all for it because I wanted nothing more than to be healthy again and get back to playing volleyball. Of which I had a spot on my college volleyball team.

The first block, a lumbar sympathetic nerve block, went well. I unfortunately had no relief but I wasn't expecting it to come that fast.

The second one, MAN WAS I FEELING GREAT!! I went and played volleyball TWICE and wasn't feeling too bad! So at my follow up appointment from the block, I told my doctor I was feeling a lot better but was still having quite a bit of pain sometimes, but not as often as usual. He decided we would try one more to see if we could shut it off completely..

.. This is where my problem comes back..

The day after the nerve block, October 10, 2014. I was feeling ROUGH and I mean ROUGH. my foot was killing me, (was hurting worse than before the block) my knee hurt so bad I could just cry. I was so confused, and frustrated. So I waited a few days for the pain to go away, like I figured it would.

A week had gone by and my pain was not how it was from the 10th. It was worse. WAY WORSE. I noticed each day it got worse. And I had a deep pain in my knee, front and back? And I noticed I was starting to lose a little bit of range of motion in my knee, and some weird feelings I had never felt before were coming back in my foot. So I called the doctor back..

He pushed my follow up appointment up and Saw me on Tuesday, October 21. When the doctor came in, he heard my story of what was going on, he felt around on my leg, especially where I told him the most pain was.. Then he stopped and just looked at my mother and I. He told us it would be in our best interest to go right to the hospital because he felt something behind my knee and thought it may be a blood clot, and since it had been quite a few days since my pain first started, he was worried the clot may have traveled already.

When we got to the ER they ran test after test, even a chest X-ray and an EKG because of how high my blood pressure and heart rate were.. It was like deja vue.. the doctors came back in and said I had an infection somewhere because my white blood cell count was high. Gave me an antibiotic and Tramadol, and sent me home, he said to follow up with a family doctor in 2-3 days. Instead, my mom and I made an appointment at the Orthopedic Institute of Ohio with a knee doctor.

On Thursday, October 23 We saw Doctor Sanko at OIO. He felt around and noticed that my pain had gotten way worse than Tuesday, even lost more range of motion since Tuesday. He noticed how diffused my pain was, and stated he believed it may be my RSD traveling up into my knee. he ordered an MRI and said he doesn't think anything is going to show up on the MRI but it was just to rule anything else out. He said with the way things have progressed so quickly, temperature differences, and a little discoloration. He believes it is RSD. My MRI was this past Saturday.

Now here is where I need all of you. Thursday I have an appointment to get my MRI read, an hour after that I have an appointment set with my pain management doctor.

I'm praying so hard that something will show up on this MRI. Because I cannot take anymore bad news. And I want this to be something that can be taken care of. But right now.. my pain level on that "scale from 1-10" is about an 11. It sucks, I can't walk right. I look like an idiot walking to and from class. And on top of that, I can hardly EVER sleep.

I just want answers. My mom and I are thinking maybe going to OSU Medical or Cleveland Clinic for this now may be in my best interest.

Those of you who live here in Ohio, where do you go for your pain?
Are there any doctors you would prefer/recommend?
Or a certain hospital?
Cleveland Clinic's neurology department was great! Do any of you know of their pain management department?

Any recommendations, advice on how to cope, things you have learned to help you relieve pain, things that keep your outlook positive.. ANYTHING AT ALL. Please, let me know..

I know this was really long but I hope you had the time to read it, because I really just need some help and advice. I'm trying to stay so strong and be positive but it's so hard when you're in this much pain..

Thanks in advance!!

Bailey

You might want to copy your story onto the main RSD section with a thread of your own for most replies.

http://neurotalk.psychcentral.com/forum21.html

New thread -
http://neurotalk.psychcentral.com/ne...newthread&f=21