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PepperCross · 04-12-2013, 11:29 PM

Quote:

Originally Posted by ginnie

Let me know if you find something out about Ketamine. Somebody on Neuro Talk always has some ideas. It is important not to run out of hope. Keep plugging away to get the treatment you need. Ketamine has been used alot in our military, for wounded vets. There have been some good results for RSD and CRPS. The American Journal of Medicine also has published some results. I am in your corner. ginnie

Thanks so much for the words of encouragement

. I like to keep pretty upbeat even though sometimes it seems futile, but like my dad says "If I weren't laughing I'd be crying." So yeah, I keep going and try not to complain too much since it won't get me anywhere or give me any satisfaction.

I did find out Vanderbilt hospital does have a ketamine infusion program! Yay! Now all I have to do is get my doc to set me up for it....well, that doesn't sound very simple does it? But I think he might since I feel it has spread to my left hip in the last week. Surprise! I also found out my doc doesn't prescribe pain meds which really is ironic! Pain doc doesn't prescribe pain meds....

If this guy doesn't have plans for me my next visit, which is still about 2 weeks from now, then he gets the curb and I find someone else. I have learned from working in doctors offices one has to take control of one's health care and make sure the doctors are doing what they can and should or go find one who will.

How are you doing? I hope you are doing all right tonight, or whatever time it is where you are

ginnie · 04-13-2013, 08:37 AM

I hope you can get a refferal to Vanderbelt. Your doctors if they care at all, should do this with no problem. Also for a pain doctor, not to prescribe pain killers is weird. This seems to be happening more and more in this country. I know the FDA is on doctors backs, but this type of doctor behavior is stupid. Maybe he got in trouble before???You can check his records to see if there have been complaints against him. I would do the same thing you are contemplating doing, kick him to the curb. You deserve good care, don't settle for less. I interviewed four pain specialists, and selected a new kind of doctor. (Here they thought they were interviewing me....)
Have you tried a physiatrist? This type of doctor is a pain specialist first, but then go a bit further, to try and treat on a cellular level. My doctor has never denied me pain medication. She allows me what I need to have some normal times in my life. It may be worth it to check out this type of physician. Don't give up. I hope you get into Vanderbelt, and can see a doctor who does ketamine infusions. Let me know how it goes.

cailinruaidh · 04-18-2013, 06:11 PM

Hello PepperCross, I don't live in the US anymore, so the only treatment center for ketamine that I know of is in Tampa, FL. Just google treatment center RSD Florida but I think they do a lot of ketamine treatment.
The worst thing for RSD/CRPS is inactivity; I'm afraid that the repeated wearing of the boots, especially when the foot was abnormally painful, precipitated the RSD. Unfortunately, some orthopedists don't know much about RSD.
What the doctors were doing with the nerve conduction test, MRI and bone scan was ruling out everything else which is the way you diagnose RSD, so they were doing the correct thing.
The lumbar blocks are not a cure for RSD. They help diagnose the RSD. If the pain responds, then it's more likely to be RSD. The purpose of subsequent shots is to enable
you to do physiotherapy which is the best treatment for RSD. After a time, they cease to be effective and are usually stopped.
Forgive me for calling it RSD: I was diagnosed before the name was changed to CRPS and it just comes easier. They are the same thing.
Check the RSDSA website for support groups, they have a page on it. You can also phone them. You could put your name forward as a contact for your area and set up a group when you get replies.
Set up a Facebook page with CRPS or RSD and your area in the title and I'm sure you will eventually hear from people. A friend of mine did that successfully.
I'm really tired right now, it's after midnight here (in Ireland) but I promise to get back to you again at the weekend with some more ideas. My RSD began in my L ankle too! Paula/cailinruaidh

Forgive me

mcfly · 04-21-2013, 11:02 AM

Hi everyone.

I have posted here once before, just to check in, when I first found this website. I wanted to thank everyone because before I found it, I was feeling lost and crazy. I read this forum all the time, being the only place i feel a little normal.
So I guess I dont know where else to go with this...

I was diagnosed 3 years ago, CRPS in my right foot. I am 30 years old.

Three years ago, I made a appt with dr schwartzmen (the rsd guru). I actually use some of the papers he has written, as a way to explain my condition to family and even to doctors who dont know anything.

when i made the appt, I was told he has a 3.5 yr waiting list. SO I WENT ON. MAde an appt for jan 2014.

Three years later, I am pretty much hopeless. I cant work, cant do anything... the pain just doesn't stop... i think you all know the drill.

SO yesterday i get a letter- DR ScHWARTZMEN is retiring this June so i will have to see his other doctor when i go in january. Sure, he trained this guy, but still... I understand everyone has their own life, and that he is older in age and tired, but if he has worked for 40 years with RSD patients, and he knows he has a current waiting list of 4 years.... a few months notice seems harsh. I am being selfish, i know... just hard.

So I cannot help but feel lost. I am seething with anger and disappointment, but there is not a dam thing i can do.
So now i feel like.. despite my best efforts.... hopelessness is creeping in there. Had to get this off my chest.

Thanks for listening
Ruthie

cailinruaidh · 04-22-2013, 05:09 PM

Quote:

Originally Posted by PepperCross

Hi,
My name is Pepper and I have CRPS in my left ankle and foot, and I have a suspicion it is moving to my right ankle and foot. I say I have a suspicion, since neither my podiatrist nor pain management doc agree with me, although my right is feeling a bit stiff from day to day. I knew absolutely nothing about CRPS a year and a half ago, when I developed it after I broke my left ankle and foot for a second time falling down some hotel stairs. The first time was just before a job interview when I fell down some cement stairs, which also caused me to sprain my right ankle. I have also torn ligaments in the left ankle back in high school, which was many years ago.
When an orthopedist saw me the second time I broke my ankle and foot, he declared me "cured" after wearing two different boot casts for 4 months. My ankle and foot were still swollen, but he said he saw nothing interesting or anything to worry about and told me to go back to the shorter boot (up to my knee), and try wearing that for another couple of months. Okay, I took nursing classes at university, and I knew there was something else going on, so I sought out another orthopedic doc. He put me in an unna boot for a week, and took x-rays he said showed nothing. After a week my swelling was still there, and my foot had red splotches on it. He said I had CRPS, and he didn't know what to do about it! What?
So I went to a podiatrist I found who put CRPS on his treatment list on his website. He took x-rays right away, and found there was a "body" (piece of broken bone) in my ankle. Neither of the other docs caught it, but it was obvious in his x-rays. He said normally he would remove it, but he also said I had CRPS and didn't want to make things worse, so he referred me to another doc in his office who only dealt with CRPS. She then gave me a nerve conduction test, which was negative, a bone scan that was negative, and an MRI that was negative. I met with both docs after all the tests, and even though they found nothing, they agreed it was CRPS, since my foot and ankle were still swollen, very painful (even to the touch), and had red splotches on it. They said, and I have learned, even though those tests came back negative, CRPS could be and was still present.
I was then sent to an anesthesiologist who has been giving me sympathetic lumbar blocks for over 14 months, and prescribed a cream, with ketamine, lidocaine, clonidine, gabapentin, and some other meds, which I was using about 6-8 times during the day. There was some relief, but we kept up the nerve blocks, since I would get some relief for about 4 weeks at a time. The last time I had a lumbar block, about three weeks ago, I didn't get hardly any relief at all, and I had an appointment with the podiatrist, so I mentioned it to her. She then gave me a most painful shot of cortisone in my ankle, slapped an unna boot on it, and told me to see her in 4 weeks, even though she didn't think she could do more than that for me. The shot caused a great deal more pain than I already had, so needless to say, I won't be going back to her.
I called my pain management doc and left a message for his nurse regarding the last lumbar shot and the cortisone shot, and included I was in some severe pain. I didn't get a call back for several days, so I called again, and when she called back, the same day this time, she said she had given the message to my doc and they would get back with me when he responded. When I finally got a call back, a few days later (this took a week and a half!), I was told he wanted me to come by his office for a consultation on what to do next, what my options would be. The kicker is the appointment was a month later! I have no oral pain meds (he doesn't believe they work), and I have been in pain, though the degrees of pain vary dependent upon my activities, or just when I'm not sitting with my ankle and foot propped up. Once I even got out of bed, just after a four hour sleep (I don't sleep a lot, which oddly doesn't bother me), and I couldn't walk on it.
I do have my cream, which I have been putting on about 6-8 times a day, but my pain just continues, although at different levels.
I have heard about ketamine infusions, outpatient and inpatient, and I don't believe my pain doc performs them, but I'm not sure till I see him about three (OMG) weeks from now. I did get in the internet to see if a doc in Nashville performed these infusions, since we have Vanderbilt Hospital, which is always on the cutting edge and performs lots of procedures most hospitals around the country don't.
After searching the Vanderbilt website, I found nothing about ketamine infusions. I have searched ketamine infusions in the state of Tennessee, but find nothing. I have read about others in Florida, Oregon, and California, and I think one in Pennsylvania, but have yet to find one here.
I am pretty desperate right now. I also have fibromyalgia, which has been flaring up (no surprise there), and so I have quite a bit of pain every day.
Does anyone here know of a hospital or doctor in Tennessee who performs the ketamine infusions? I have read they have a high success rate, and I have responded well, up until recently, to the lumbar shots, even if it was for only 4 weeks.
I have been reading the posts here for a while (sorry I didn't sign up till now), and on other sites these infusions really have helped quite a few people.
Any advice or information would be awesome!
Seems there are some really great people here, so that is why I've joined this board.

BTW, so sorry that was a long story! I also haven't been able to find a support group in the Nashville area, so I guess I had to spill it all out here. Also, my husband is tired of hearing about all this, and I don't have any real friends here; Long story cut short, I have lots of interests, but one isn't church or religion (which is huge meeting place in my area), although I wish it was, might help, and the other interests, my love of different types of music, movies, my love of writing, and so forth, don't appeal to women in my age group, or anyone I've met here period. I feel a bit lost.
Thanks for reading!

HI again, sorry I didn't get back to you yesterday. First of all, start taking Vit C , at least 500 mg/day. It is thought to improve outcome of injuries and it helps get swelling down. It's not definitive yet but there are several small studies on it.
Also eat berries: blueberries, raspberries, blackcurrant, as they are also anti-oxidants. You can also put them in smoothies.
Add anti-inflammatories olive oil or flax oil to your diet as a salad dressing or off the spoon. Heating these oils destroys the anti-inflammatory. Take Omega 3 fish oil capsules daily; the best ones are high in EPA and low or no DHA. Fish oil is a great is great anti-inflammatory.
Immunocal or bio-active whey protein, as explained by Mark Hyman in the
HuffPost, contain Glutathione, the major anti-oxidant which the body makes to get all the other anti-oxidants moving. Glutathione is low in those people who fail to recover from illness. Dr Oz does segments on glutathione on You Tube.
All this might seem like a lot of work but inflammation plays a huge role in early CRPS and and maybe even a continuing role. This was what your podiatrist was trying to alleviate with the cortisone. However putting a needle into a CRPS limb just added further injury and was way too late. It might have helped when the foot was swollen first but before the CRPS started.
You're already getting the message about CRPS: you have to be your own advocate. You have to learn enuff about it to do that. Read about it here on the forum, on the RSDSA website and there is some great information on the Florida RSD foundation site, particularly about the various uses of ketamine and things to be aware of when working with a physical therapist. Never let anyone use ice on it and never let a therapist stretch a limb out. You must do the stretching yourself, preferably in a pool. Because of the danger of re-injury, pool exercise is the gold standard.

I hear you when you say you're off painkillers. Are you at least still taking the clonidine, gabentin etc? They may help prevent the CRPS spreading. The clonidine and lidocaine can be delivered by patch, and the lidocaine won't take the pain away but it may take the edge off the pain. The ketamine cream is useful in that it can be applied directly to the pain, there's no worry about pulling an adhesive off the worst part. You may be able to wesr the lidocaine patch higher up the leg. I used the ketamine cream and would put it in a circle around my leg just above the injury as well as on the injury.
I don't know if it was imagination, but I thought that helped.

Do all the exercise you can while you wait for your ketamine treatment. If you can't walk, then swim, bicycle or leg cycle in the air.
Warm the limb in water, smooth cream onto the limb if you can, just above the injury if you can't. Always Massage towards the heart to help swelling and edema.
Try to get into the habit of touching the limb yourself several times per day, I know you don't trust anyone else to do it.
Look for You Tube videos on Graded Desensitization and Desensitization Exercises. You have to keep the circulation moving in the limb to prevent further damage and this also helps swelling.
See Pepper, my letter is as along as yours! There will always be someone on here to talk to. We all started where you are and we all remember the fear and the isolation. You can also send private messages here.
Hope you get the ketamine soon, but in the meantime there are things you can do to help yourself and regain your power. Lots of Hugs. Paula

kbarrett · 04-22-2013, 05:30 PM

Hello everyone, I'm Keith.

My CRPS was brought on when I fell at work and injured my left wrist. After several false starts, I was diagnosed in late December.

I've been on Co-Codamol since day one and was prescribed amitriptyline when officially diagnosed. I was also on gabapentim, but suffered from memory lapses and poor concentration. This culminated in my letting the children into the kitchen having left the cooker and grill on. For some reason, my wife took a dim view of them being in the room with a cooker on fire!

I'm just starting on lyrica, in the hope that I have fewer side effects!

alt1268 · 04-24-2013, 11:52 AM

Quote:

Originally Posted by kbarrett

Hello everyone, I'm Keith.

My CRPS was brought on when I fell at work and injured my left wrist. After several false starts, I was diagnosed in late December.

I've been on Co-Codamol since day one and was prescribed amitriptyline when officially diagnosed. I was also on gabapentim, but suffered from memory lapses and poor concentration. This culminated in my letting the children into the kitchen having left the cooker and grill on. For some reason, my wife took a dim view of them being in the room with a cooker on fire!

I'm just starting on lyrica, in the hope that I have fewer side effects!

Hi Keith, Welcome to neurotalk. I am sorry that you have rsd. I also fell at work but I broke my ankle. They are both painful. As far as gabapentin are you doing better now that you are off it? I haven't notice much difference in my concentration, memory lapses etc. whether on or off it.

Anywho, welcome!

AZ-Di · 04-24-2013, 02:30 PM

Quote:

Originally Posted by kbarrett

Hello everyone, I'm Keith.

My CRPS was brought on when I fell at work and injured my left wrist. After several false starts, I was diagnosed in late December.

I've been on Co-Codamol since day one and was prescribed amitriptyline when officially diagnosed. I was also on gabapentim, but suffered from memory lapses and poor concentration. This culminated in my letting the children into the kitchen having left the cooker and grill on. For some reason, my wife took a dim view of them being in the room with a cooker on fire!

I'm just starting on lyrica, in the hope that I have fewer side effects!

Welcome Keith!
I'm pretty new here myself, but it is a wonderful place for support and information! I too have CRPS from broken wrist and surgery in December.
I was switched from Gabapentin to Lyrica. The side effects are similar, but the Lyrica makes me less "queasy". I had the dose lowered to 50 mg. and they want me to work up to 3 per day, but 2 is the most I can handle so far.
If I wait to take second one at bedtime it's easier to function but it's harder to get up and going in the morning.
My Dr. recommended supplementing with Vit. C, magnesium, and D3 is supposed to help keep the bone from being affected.
Keep us posted and welcome!

kbarrett · 04-24-2013, 04:01 PM

Quote:

Originally Posted by AZ-Di

Welcome Keith!
I'm pretty new here myself, but it is a wonderful place for support and information! I too have CRPS from broken wrist and surgery in December.
I was switched from Gabapentin to Lyrica. The side effects are similar, but the Lyrica makes me less "queasy". I had the dose lowered to 50 mg. and they want me to work up to 3 per day, but 2 is the most I can handle so far.
If I wait to take second one at bedtime it's easier to function but it's harder to get up and going in the morning.
My Dr. recommended supplementing with Vit. C, magnesium, and D3 is supposed to help keep the bone from being affected.
Keep us posted and welcome!

Thanks guys.

It's too soon to say if there is any change with the lyrica as it's only been a short time. I'm just hoping that it'll make a difference.

Thanks for the advice on the supplements. I'd been taking vit c but will get some magnesium and D3 as well.

sdpyle · 04-24-2013, 08:59 PM

HI everyone, Im Shirley

I was Diagnosed with RSD about 7 months ago after a car accident that resulted in a fracture and a slipped disc of my L5 S1. I woke up one day with horrible pain in both legs and back, it hurt to bear weight, it hurt even to touch my legs or even have a blanket rubbing up on my skin. I had uncontrolled twitching in my legs and even had blotcy purple skin. The DR's took 5 days of me being admitted in the hospital for them to diagnose me with RSD. Since that day, I experience pain and burning and stabbing all day every day. It's kinda hard when those around you dont understand the type of pain I'm in every day. Im just looking for someone to talk to about this.
THANKS!

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