New to the board and frustrated w/RSD

[fyw202]

Dear all,

I just joined health boards a few weeks ago but today is my first post. I was diagnosed w/RSD 2 and a half years ago. I had an ankle arthroscopy in Feb of 2001 and starting getting stabbing pains a few months later. I was extraordinarily lucky in that I was diagnosed a few months later. I found at I had nerve damage to my right peroneal nerve and since then, my RSD has spread into the entire lower half of my body.

I guess I am writing to you all because I am frustrated with my progress. I am currently in law school and have been trying to balance treatment with my school work. I have managed to stay in school thus far although I have missed at least 3 to 4 weeks a semester due to RSD.

Within the past few years, I have tried a whole range of treatment options, all of which seemed to either not work or caused me great side effects. Let's see...I was in physical therapy for about 6 months, which helped with the sensitivity but not much else. While in physical therapy, I tried acupuncture, which did not help at all (besides, I'm deathly afraid of needles). I also tried a sympathetic block which caused me to be extremely ill and my pain returned on my way home from the hospital. Since then, I have had 3 epidural infusions. The infusions seemed to decrease my pain at least for a month or two, but everytime I was in the hospital, my blood pressure would drop to extremely low levels and I would leave the hospital with a horrible spinal headache (where spinal fluid is leaking and you can't get out of bed). Therefore, after getting out of the hospital I would have to get 1 or 2 blood patches (where they inject blood taken from your arm into your back) to stop the leaking. I have also had cryosurgery done twice (where they have frozen my nerves in my right foot). This past November, I tried a popitil block (numbing the lower half of your leg in the hospital--it's similar to an epidural infusion). I ended up going into toxic shock in the hospital, where I almost stopped breathing and they had to give me medication to revive me and depressants to keep my from shaking.

So...now I'm back to just taking a ton of medication. Until last week, I was taking 2100 mgs of Neurontin, 50 mgs of Trazadone, 750 mgs of Keppra, 20 mgs of Pamelor, 8 mgs of Gabitril, 15 mgs of Methadone, 1300 mgs of Percocet, amd about 650 mgs of Ultracet. I have decreased many of my medications within the past week because I went into toxic shock again this past week and my doctor got freaked out (by the way, I only way about 90 lbs). Anyways, if anyone has any questions about medications, I've tried most painkillers and neuropathic medications.

I apologize for the long message but I am really frustrated. I am trying to finish my law degree and don't know what else to try as the pain continues to get worse. I have an appointment on Tuesday to see a doctor who does hyperbaric oxygen treatments. I am also considering another epidural infusion, during which my doctor would also give me a ketamine drip or a spinal cord stimulator. I was wondering if anyone knew anything about these treatments or any other possibilities.

I also just wanted everyone to know that I am here for all of you. I just turned 24 years old and know how hard it is to plan your entire future w/RSD in the background. I want to continue my life as normally as I can and was wondering if anyone could offer any advice to me. If anyone has any questions for me, please feel free to respond because although I have only had RSD for a little over 2 years, I have spent these years trying one treatment after the next.

Thank you for your time.

[RSD_Angel]

Hello and welcome to the board..

I can feel so much for you bc i am also 25 years old and have had RSD now for 15 mos. I am a nurse and was working as a nurse for 6 years before this hit me. I know how hard it is from going to an active person to a couch potatoe. I worked 70 hours weeks and was on my feet for more than that and also being social in that i would see different people and my coworkers and be able to talk to them freely.. but then in just a weeks time, and after a simple surgery like mine ( to remove a mortons neuroma in my Right foot) to having a severe disabling disease that prevents us from doing much of anything.

I really dont know how you are able to keep up in law school, but I am soo proud of you that you can!! Thats one thing you cant let this RSD do is to take over you and take all your hopes and dreams away. HOw much more do you have left of school??

I am in stage 3 RSD and have had all the same treatments as you have had and end up again like where you are... still in pain. With me the RSD has also attacked my tendons and ligiments in my foot and has left me with a severe foot deformity so that i can only walk on the outside of my foot. I have had the epidural infusions nad lik eyou they work for only a short time. Mine only worked while i had the epi in.. once they took it out it all started to come back and once the meds were out of my system, which only takes 2 hours, I was back at square one agian...

My PMD wont give me much pain meds.. hes hesitant about giving them out bc he doesnt want me to be addicted to them.. ?? So prety much what i am on is Neurontin 600mg four times a day, Elavil 50mg at nite, and Lortab 10/750 as needed. but even the lortabs dont touch my pain.. so why bother taking them...right?? I just went and seen a vascular surgeon last week and he was supposed to be able to help get better blood flow to my leg and foot, but when he saw my foot and leg all purple nad blue and deformed.. he wouldnt touch me with a 10 foot pole.. so i am stuck in limbo waiting for what my pmd thinks will help me at this time.. all i really want is the pain pump and someone to fix my foot deformity, but no one will bc of the severe osteoporosis in it.. ???

Im again glad you found this board and look forward to tlaking toyou ! These guys on here have helped me out soo much.. i really dont know where i would be with out them !! Keep in touch!!

[ejames4773]

Hello fyw You have really been through the mill. How brave you are to continue with your career, while dealing with this horrible syndrome.
Here in the UK I know of one young woman who last year was in a wheel chair. This year at the UK conference she was walking with a stick! This with HBOT (hyperbaric oxygen therapy). She had a few sessions at a centre, and her pain levels decreased a little. Her parents then bought her a second hand machine, and because she is able to use it every day, there has been a much faster improvement. Now that's not to say that it would work for everyone, but since you have had such bad reactions to some meds in the past, perhaps HBOT is worth your trying.
There are quite a few people here who have contracted RSD after a neuroma, I am sure they will respond to you.

Best of luck,
Edna

[dayton]

I's so proud of you!! To keep going is very difficult isn't it? My daughter is a lawyer in Washington so I know what you have to do.

I wish I could give you advice. Mine started with banging my foot against a chair rail. Simple stupid little thing like that. So since Feb 03 I've had this crap.

I am determined that I am not going to give in. I still work full time. I've had 9 blocks and they help quite a bit. The last one took away the swelling in my right leg and ankle. It went from foot to leg to right arm. Now I'm beginning to think it's in left arm and leg. I truly hope not.

But with this crap, I also have fibro and there are days that I can't tell one from the other.

The people on the board are very knowledgeable and willing to help. When I'm down, they're here, so feel free to vent away.

I'm so sorry you have this but know that everyone is with you -- always. It's going to be a rough road but we're here for you!!

[destinyevans]

Hi,

This monster is frustrating to say the least.

I developed RSD after a right ankle fracture, October 2, 2000. I started blocks within 5 weeks which took away all the swelling. I was finally able to walk with a cane Feb.01/2001.

The RSD did a mirror spread to my left foot and by August/2001 it had spread up both legs. I had 2 epiduals which did nothing. In between I developed Fibro {which amplifies the pain of RSD) and hypothryoidism.

I don't take many painkillers by choice because most don't do enough and I would rather keep my liver for now. Baclofen has helped me a lot as far as spasms, cramps and jerks. I walk everyday, strength train 3x a week.

I've come along way in the last 3 years and it has been one heck of a battle. I've been in late stages since November/2000. My immune system is doing some pretty funky things and showing some stress of what this monster does to us. I have bloodwork done every 3 months to document the changes.

As far as other treatments are concerned sometimes we become desparate to find that miracle. At this point it doesn't seem there is one out there. HOTBOT has helped some people but for many the RSD comes back to remind them it isn't gone. Another gal had HOTBOT and ended up in the hospital near death and full body RSD.

I think what most doctors forget is, RSD is different. It is NOT JUST chronic pain. RSD is progressive. Many treatments that are out today are for chronic pain and don't work for us just for that reason. A person with chronic pain neck won't end up with full body pain if a treatment fails. But a person with RSD will and a lot more.

Because we are all different it is hard to know what will help and what won't.

But if blocks haven't helped you for a good period of time the chance of the SCS helping are very slim.

I applaud you on being in law school. You should be very proud of yourself.

Hugs Destiny