Introducing myself (long)
 

I struggled posting. I still don't know if I am going to be bombarded with comments about how I should count my blessings (and I do) as I have felt elsewhere.

I had the good fortune to stumble on my CRPS diagnosis early- before things got to the disabling point. almost 6 years ago I injured my foot in during a Taekwondo tournament. At the time no xrays were taken, we discounted as a sprain (me, the dr, and the chiropractor). It took months for the soreness to go away, for the limping to stop. And I was fine for about a year. then the twinges and tingles started. Not all the time, mostly while doing certain things in my workout (pivoting). Then the cramping started. Pretty soon I could not get through a taekwondo workout without cramping in my foot and toes. Then the pain started in the top of my foot. I had xrays, chiropractic massages, ultrasound, elctro-whatever it is. it went on like this for a few years. Fall of 2008 a chiropractor finally said it looked like I would need surgery and it is BAD in the foot so wait til I could no longer stand the pain. I had to quit my part time job at Target- hurt too bad. My fulll time job is a desk job, I was distracted but able to continue. Finall spring of 2009 I saw a podiatris as I could no longer stand the pain. One exam and I was told their was no surgery- I needed a nueroloogist. the first neuro I saw immediately said I had nerve damage in my back- causing my foot pain. After three cortisone shots with NO relief I got skeptical. I was to the point I was honestly wondering how drunk could I be to cut off my foot and not so drunk I would bleed to death.

Then a friend of mine with MS halfway across the country read an article while waiting in her nuero's office. CRPS sounded like what I had! She scanned me the article, I started shaking and went directly to my nuero. He dismissed it. And seemed angry I was questioning him. I took it to my general practioner. He agreed it needed to be pursued and sent me to another nuero. EXTENSIVE testing ruled out so many things but kept poiting to CRPS. MRI showed no bone damage yet. I had caught this before it got debilitating.

I was already taking an antidepressant... I was told I had no idea how much pain I was in since that was one given for pain. Now I think was I depressed because of the chronic pain??? I got trazadone to sleep and gabapentin. Once it all kicked in I got abt 9 monhs of nearly pain free relief. This past summer it started in again but spread to my whole leg. I was told I will always be changing meds as I get resistant. We upped my dosages, changed meds, and now I am on my third cocktail and it worked well for a couple months now.

I was refered to a pain management dr- at this point it is more pain management than anything else - and I have a MILD case!! He suggested a spinal cord stimulator. We will always be "chasing" the pain with meds. He said that with my mild case, if we go with an agressive course of action, we could get me off meds and even possibly (crossing fingers) put it into remission.

so that's my story. Monday I receive the trial of the scs. I have had a wide variety of symptoms. I have read and read and read. I am scared that this could remain this way for the rest of my life or within months I could be completely disabled.. at 34 yrs of age! I feel guilty that so many suffer much more than I do (and was basically told to quit complaining about even the minimal pain I am in by others who would love a low pain level) I know I am lucky. And while I know many of you would love a 3 on the pain scale. I am thankful every single day for my friend who stumbled on this...

thank you for listening

Have you tried any nerve blocks? A series of nerve blocks can sometimes put RSD into remission, especially early in your diagnosis.

There is a seperate forum for the SCS here at Neurotalk. It works well for some, while for others it has caused spread and other problems. We are all different...

Good luck to you. Sandy

Have you had an EMG performed for trapped nerves?

Thanks, Sandy... yes I have had nerve blocks. They lasted at most a few days.

yes, I have had that and more :) in fact I do have tarsel tunnel syndrome in the same foot but was told the correction for that will aggravate the CRPS.. nice huh?

I had test results sent to Mayo clinic in MN requesting a second opinion appt. They wrote back saying after reviewing my tests and results, they concur with my drs and they don't feel they have anything more to offer.

Really? I'm no doctor but what does this description of arsel tunnel syndrome sort of compares to?

"Patients complain typically of numbness in the foot, radiating to the big toe and the first 3 toes, pain, burning, electrical sensations, and tingling over the base of the foot and the heel.[1] Depending on the area of entrapment, other areas can be affected. If the entrapment is high, the entire foot can be affected as varying branches of the tibial nerve can become involved. Ankle pain is also present in patients who have high level entrapments. Inflammation or swelling can occur within this tunnel for a number of reasons. The flexor retinaculum has a limited ability to stretch, so increased pressure will eventually cause compression on the nerve within the tunnel. As pressure increases on the nerves, the blood flow decreases.[1] Nerves respond with altered sensations like tingling and numbness. Fluid collects in the foot when standing and walking and this makes the condition worse. As small muscles lose their nerve supply they can create a cramping feeling."

It's not unusual for RSD patients to test positive for trapped nerves and the like. Generally surgery is a very bad idea .

Even if the nerves are trapped? There have been people diagnosed with RSD, showed many symptoms who had trapped nerves released and all symptoms vanished. Don't get me wrong, I'm not saying RSD is just trapped nerves, I realize this condition goes way beyond that. I also realize surgery to those with RSD can cause the disease to spread. But allow a nerve to remain trapped? Would that be something most experts on RSD would allow?

My podiatrist, orthopedist, and neurologist all agree that surgery is not in the cards at the moment for the Tarsal Tunnel. I am hopeful that if I can get pain under control with the spinal cord stimulator that maybe... just maybe... I can get the nerve released. Until then, I am going off my drs recommentations. Surgery, injury, even a stubbed toe scares me right now.

Hi Mel, I hope you find the comfort and support that I have found here. Welcome to a wonderful group of caring, informed, friends that only want the best for you.
Please research the SCS a LOT. I've had RSD 15 years now full body and internally. I'm grateful I'm mobile with only one hand crippled. I've had a lot of physical therapy to regain range of motion and stay mobile. Massage has been good for me and erased the physical pain of touch. My goal is to do HBOT that my Dr. does at two new clinics in Phoenix area. Personally, I've read too many sad stories about the SCS spreading the RSD. I've also read some good results, but I don't want to take the risk. Personal decision.
I'm sure the Mayo comments were of encouragement. They did the Ketamine trial studies here at the Scottsdale Mayo here in Arizona. Many have had good success with Ketamine infusions.
Please keep in touch and let us know how you are. One of your new friends, loretta with hugs:grouphug:

thanks loretta

I hope I can find support here- but I still feel like I have nothing to complain about really. my pain level is low most days.

I have worried about the scs spreading the crps. But my pain dr feels we could get it into remission if we aggressively attack the pain early. I am hopeful. I can only trust my team at this point. I have educated myself as much as I can.

Hi Mell, You have found a great group of caring and understanding people here. I think at times they have probably saved my life. What a way to meet people though, with the common factor being RSD. I just had my SCS trial in Dec. and I am scheduled for permanent implant of Jan 25. I had great success with the trial, and hope you do to. I think that it probably cut my pain by about 50% and I did not have to wear my wrist brace at all. I was also able to cut down on my pain meds for a week, and that was great! It sounds to me like you have a really good doctor who is understanding of what you are enduring. You may feel like you have nothing to complain about, but you need to ave a good support system behind you. You are right about the pain causing depression, I have struggled with the depression and RSD for about 8 years but only was diagnosed with the RSD about 3 years ago. At that time I had already had 8 surgeries and numerous injections into the wrist joint. Since then I have been on a high cocktail of medication and had several nerve block injections. The SCS trial has been the only thing that has really made a dent in my pain. I really wish you success with your trial. Lisa

hi
 

hi mellemmel, hey always nice to find a site where you can be happy and pass it on and be down and pass it on and people are with ya no matter what, i have been on here for a few days only and i can tell which ever we all are everyone is happy for ya and there for you no matter what and thats what we all need, i to feel bad as if im to happy sometimes and maybe people think oh yea she cant be that happy of a person lol, but i try to be a postive influnce, my husband has rsd 3 -4 yrs now he got trapped under his semi truck his hand and was trapped for 20 min blocking off his blood and crushing the nerve, and me i got selected with myasthenia gravis 37 yrs now,, so welcome to a great site im happy i found it as well... linda

If it's being caused by a trapped nerve then there should be a good possibility that a release would result in remission. It's the same with neuroma or other physical problems. But there's a tendency for the swelling of RSD or something associated with RSD to give a sort of "false positive" for nerve entrapment. Operating under these conditions is extremely risky.

If it feels like an entrapment then that's one thing but it sure doesn't sound like one. There are few things RSD hates like on operation and that goes double for the affected limb.

!
 

Hi mellemmel,

Entraped nerves are a tricky area. Mine are in the elbow and did have a Ulnar nerve entrapment which might have caused some neuromas. All I can tell you is be very careful who you allow to do any type of nerve surgery. I'm not going to go into my whole long story but after many surgeries, many RSD procedures including Ketamine I finally go off most of the meds. my arm was back to 90% good functioning but still had this strange relentless pain in the elbow. So a neuroma was mentioned by one of my doctors my surgeon did not agree did not want to do a surgery to try and find something but did it anyway, as my pm doctor stated " I had to beg him to do it". I should of listened to my surgeon when he said NO. And honestly it made the pain worse and 4 years later I'm still searching for an answer of what this pain is. Everyone agrees it's some type of nerve problem but what type and can not been seen on any films.

I have been communicating with a doctor who teaches at John Hopkins and has his own Periphial Nerve Center in MD for about 2 years. But I not ready to jumb into the arms of another surgeon.

Gabbycakes

Thanks Gabbycakes,
It is bad enough when those in contol of our physical well being take risks, think they know it all, want to try something yet don't have to suffer the consequences, and those of us who have yielded to their supposed 'knowledge' and experience(?), sacrifice our days and nights, our minutes and hours, and submit not as much to the Drs as to the constant drive within us to rid ourselves of this that has taken up residence in our bodies and the hope we have of being restored to what we once were. Then to find the results have set us back into worse circumstances or sometimes even worse to have no change at all.

There seems to be redemption of our seemingly wasted sacrifice on some level when we can share our experience with someone else who might benefit from lessons learned on our own journey.

Thank you all on this forum who are willing to share your defeats, failures, attempts at grasping for the golden cure, so that those who come behind you might gain wisdom and insight from your trials.

My own experience was that within days I had more info than I could process after months of searching on my own and coming up with little or nothing of any account. And the knowledge and wisdom here comes with compassion and friendship as an additional balm applied to the wound this RSD has made to our spirit.

Thanks again Gabby, and all for offering a hand up to those who are low.
With hope,
pat e