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 :hug:

Hi Peppercross
 

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.

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

need to vent.... i think this is the last straw...
 

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

PepperCross
 

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

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!

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.

Hi, I'm new here just looking for some friends who understand
 

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!

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

Intro
 

Hello my name is Colin, I first was diagnosed with CRPS in May 2012 and have been through Ganglion blocks, and on a multitude of medications, Dilaudid Contin, Dilaudid Prn for break through pain, Lyrica, Trazadone, zoplicone,and buspirone . I first broke my left wrist March 2012 and started to have real problems in May that year when the cast came off.
Around June of that year I lost the use of my left hand, I can move my thumb a tiny amount. It has been a hell ride, but I struggle the most with the ability to sleep maybe 1-1.5 hours at a time and I wake up with my left hand feeling like it is on fire and my both hands feeling like they are asleep.
Result I never seem to be able to sleep.
The less sleep I get the worst the next day is.

On my bad days my whole body seems to betray me, my legs shake and the muscle are so tight it is difficult to walk, and often I will get the attacks where the pain starts in my left hand and moves up my left arm into my left chest muscle and up into my face, my hearing starts to go funny and I get flashes of light, I try to go and lie down but a number of times I don't make it and find my self blacked out waking up on the floor.
Does any one else get these I am starting to loose my mind over this? And if so what are you doing to help with the constant waking and blackouts from sudden pain flares.

Thank you so much
Colin

Hi Colin
 

Welcome to Neuro Talk Colin. I am sorry however that CRPS has brought you here. There are alof of people who have this condition. Please don't loose hope. Many should respond to you, and maybe give you some advice.
What I have heard about that our vets have access to the most are Ketamine infusions. There are locations thoughtout the country. This has had some good results. The JAMA a medical journal has had some published results. In my state, Tampa Hospital, is the location that has the Ketamine infusions.
I also hope you have the very best pain specialist in your corner. Maybe if you ask him, he will know of this therapy. I had Ketamine infusions in my spine before my cervial fusion. It worked for me, and gave relieft for a few months at least. I had two, and then was told I needed the spinal fusions.
I really wish you all the best. Too many have to suffer with CRPS, and I really hope that someday a permanent solution can be found. ginnie:hug:

Hi Colin,
I'm so sorry for your suffering with this CRPS! I feel so upset for you at how far it spread! It can be hard for others to understand the range of pains with this. At least you will get good support and advice here. Glad you found this site:)
I too have CRPS in my left hand and arm after broken wrist and surgery in December '12. I started having terrible "complications" within 2 weeks and luckily my Physical therapist knew what it was and reported it to my Doc about a week later.
In addition to the RX meds. I heard Vitamin C helps prevent spread so I started at least 500 mg. a day, Magnesium 500 mg. (helps inflamation and constipation from opiates) and vitamin D3. Most of all DO NOT PUT ICE OR COLD on CRPS limb, you probably already know that.
How many nerve blocks have you had? Have they helped and how long do they last? I've had 5 with various results.
Keep us posted, good people here.

New to RSD & Fibromyalgia
 

I was diagnosed with fibromyalgia and RSD, my pain is constant. I am seeing a pain management doctor as well as an orthopedic and neurologist. I got hurt on my job in 2009 and has had multiple surgeries on my knees. Resulting in a total knee replacement on one side with possibilities on the same on the other side. After surgery did I develop the RSD. I am on pain meds but that doesn't work very well along with my other meds for the condition. Can anyone give me some advise on what really works for these conditions?:eek:

marybrown5057
You have been fighting this thing for quite some time. 2009. Sorry to say, there is really no cut-n-dry answer or drug therapy. There are many drugs, but they seem to be different for each person. As far as 'really working,' they help but not completely. The only drug that has shown a glimmer of hope is Ketamine. Even that though does not work for everybody. There are some people that have achieved remission. I believe that is largely attributed to a combination of therapies including much physical therapy. The key though seems to be catching the CRPS/RSD in its early stages. What has your pain management Doctor prescribed for you?

I hope you find relief from your pain soon.

Hi Mary Brown
 

DJhasty is correct. About the most promising of medications for CRPS is Ketamine infusions. Our wounded soldiers from the recent wars were the first the get this treatment. JAMA the journal of Medicine has alot of articles about this medication. I had an infusion of it in my Neck before I had cervial fusion.
It worked for about 4 months. In some of the articles, remission has been achieved. I don't know if it is available in your area, but maybe it would be worth a shot to ask your neurologist about it, and if it would be possible for you. I really hope that effective treatments can happen for all those that suffer with this CRPS. I wish you all the best. ginnie:hug:

New to the Forum and excited that such a place exists
 

I was diagnosed with RSD about two years ago now. I didn't really now how big of a monster it was until now. Since i finally did all the research that i could find on it. Of course I'd always welcome some new info on the subject.

Anywho, I got RSD from a motorcycle accident. I've done the sympathetic blocks, epidural blocks, TENS, physical therapy, aquatic therapy. Tried all the medicines that doctors have prescribed. All they do is make me really tired. I still work 60 hours and week (I've got **** to do) and I can't allow myself to sleep 20 hours a day from taking the meds. I do take about 10,000mg of Vitamin C to reduce swelling (Take 1,000mg at time and more through out the day, anymore than that and your body will just **** it out). I take Vitamin B1 because it's supposed to be good for you nerves.

I'm curious about the Spinal Stimulator. Wondering if anyone has one and could tell me about. I know that every case of RSD/CRPS is different. But if you could tell me what you can if you have one. That'd be awesome!

Well have a good day and **** lol

luthier,

There is a thread for scs and pain pumps, you should check them out. http://neurotalk.psychcentral.com/thread114132.html

I am sorry you have rsd. It is not fun and It must be hard to continue working 60 hours. Anyway please feel free to join the forums and keep us informed on how your doing.

:hug:

TOS to RSD
 

I am not sure I am in the right place. I have sympathetic maintained pain syndrome. Just diagnosed. From what I understand this condition is very close to RSD, but I don't really understand how it all works. I have overlapping symptoms like allodynia, hyperalgesia and hyperesthesia. I do not have edema or distal extremity pain or problems....so the doctor is still narrowing down my exact diagnosis.

I have been called a liar, treated like ****, called a drug addict ect......but I am a survivor and I am not lowering my self worth just because people are uneducated related to pain syndromes.

I am a registered nurse and only saw one case of RSD.

Anyway, I had cervical ribs in my neck that were removed. The pain syndrome was triggered before my surgery when I had severe nerve compression due to crushed by the extra rib.

Both of my shoulders are involved, as I had surgery on both sides.

I recently moved and went to a terrible pain management MD.He called me a liar and did not give me a referral. Said I was drug seeking. Eventually I found another doctor and I processed the referral and made sure it got to new doctor. Now I have appointment on 16 of may.......but for now I am SUFFERING....OMG:eek:

I am trying to stay strong....brave. I am very very tired. hello everyone

Ulnar nerve neuropathy/CRPS new to forum
 

Hello to all. Just found this site and wanted to contribute.

A little history on my condition-

In summer of 2011 I was involved in a minor mva(rear ended). I struck my left shoulder on door frame, left elbow struck arm rest. Might have hit head on door as well (no bruising or bumps). Originally diagnosed with sprain of pinkie and ulnar nerve neuropathy.

After about 9-10 months of cortisone shots to little finger and elbow (no improvement), a PRP shot in pinkie (no improvement), months of 2 different courses of physical therapy, couple of MRIs, and an EMG (which showed a compression of te nerve through the cubital tunnel I had a submuscular ulnar nerve transposition in Spring of 2012.

I have since had a couple more courses of OT including a session of work hardening that actually caused me to re-injure my elbow (as evident by another MRI) and was demote back to OT. Just recently the doctor sent me to a pain clinic to rule out CRPS. Well what do you know, it wasn't ruled out but added to my growing list of diagnosises (to include medial encondelytiyis(sp)).
My symptoms for CPRS are: swelling from basically elbow to fingertips during night time (will wake up swollen and then it takes about 2 days for swelling to go down-sometimes longer), change in skin colour, pain in elbow and fingers, numbness in pinkie and ring finger (alternates between pain and numbness), pins and needles in forearm, changes in tempatures to touch (elbow and forearm burning hot fingers ice cold).
Now have a stellate ganglion block scheduled for next week.

I have been out of work since the original accident.

It's nice to know I'm not crazy and there is actually something wrong with me that others are going through. Turns out a friend has this and is so bad they were talking about a spinal cord stimulator or drug pump.

CRPS Newbie
 

Hi

I developed CRPS following wrist surgery in December 2012. Unfortunately, the surgery was on my dominant side. I have been going to seeing the surgeon and a pain specialist and going to physio.

I had a steroid injection in my shoulder. That resulted in one magical day during which I could make a nearly normal fist. I also had a stellate ganglion block which doesn't seem to have done much of anything.

I am slowly getting some range of motion back in my hand and wrist. However, I still have pain in my entire arm - well, basically from my neck through to my fingers.

I have been trying to stay positive and keep up with things at work despite the disruption of the doctor and physio appointments. Strangely, I am finding the increase in the range of motion discouraging because the pain is still the same. I guess I just thought the pain would start to go away when the mobility improved and seeing the mobility come back is making the pain seem more permanent.

So, I am struggling a bit with my motivation at the moment and trying to work up the energy to tackle the pile of work I brought home with me. Of course, I know I shouldn't complain. I haven't been dealing with this for very long.

I feel your frustration. I am in the same boat (except my injury is my non-dominant side. I go for my stellate ganglion block Monday morning.

Good luck with the block. My advice would be if they offer you sedation, take it. I don't like sedation so I did it with just a local. If I have to do it again, I will definitely use light sedation.

I hope the block works for you. :)

Hang in there
 

Thanks for sharing Kim. And in my opinion, five minutes of this is too long. I've had CRPS II for ten years. A back surgery that changed my life. I worked for many years with this and still do, but not anywhere near the pace I use to could do just a few years ago. I am lucky enough to be able to work my own hours. This has become a must. CRPS is unpredictable. Working with this condition is tough at best some days. Are you taking something like Neurontin for pain control, for neuropathic type pain? I know that for me at this point it would be hard, if not impossible to live without this med. Be good to yourself and rest when needed. Hang in there hon. All of this is fairly new for you. Keep doing research and you will hopefully find what works best for you. It seems we're all the same with this and yet we're all different.

My RSD Story
 

FONT="Comic Sans MS"][/FONT]


HELLO TO ALL,

I thought it was time to post my story (@ least while I felt up to being in front of the computer) I havent been on in a few weeks due to the joys of RSD/CRPS. I hit my 9yr mark next month :eek: and it's not been an easy road what so ever as you all know the joys of living w/this awfaul condition. It started w/me after I changed & rotated the tires on my car, I tweeked something in my hip & back apperently & w/in days I could hardly stand or walk. Prior to this I was active & heathly my daughter & I were always doin something (she was 5 then) I was worried when all the sudden I went from that to hardly being able to stand or walk & I went to doctor after doctor who of course tried to say its all in my head let them deal w/what I am & see how they feel is how I felt it was sooo frustrating! funny thing I met this guy who became like family he told me I know you have what I do, you have RSD I'd bet on it & the doctors said NO NO NO your too young... So after 4yrs of WI weather & doctors not doing a damn thing I moved back to fla which is where I grew up & the weather is alot easier on the body compaired to the WI winters lol.
Anyways after I got here I went to the RSD Foundation in Tampa where they do certian things to actually "test" for RSD/CRPS which I was told stage 1 entire body stage 2 on the right side, that was 5yrs ago now so it's well beyond that but I will say for now Im not in a wheelchair but I walk w/a cane sometimes a walker depending on the day so Im thankful for that. I recently started seeing a doctor who has found that I have athritis (not good @ spelling sry) in both hips the right hip is about 2in higher than the left so he wants me to get fitted for a shoe lift to make my legs more even & both ball joints are deterating. I dont have insurance right now or even a job so gettin the MRI's of my back hips & pelvis are on the back burner for now same w/x-rays of my back, its expensive enough for doc appts every month.
Every single day is a struggle & a fight living w/RSD but I have learned that I can only deal w/each day as it comes, I dont worry about tomorrow cuz who knows how Im going to feel. I wont lie there have been days where I have just wanted to give up & be done w/it I have my days where all I do is cry & feel soooooooo alone I dont have my kids which of course makes it harder cuz they both live out of state so I dont even get to see them which kills me every single day I think thats the hardest of all honestly but thru all of this I've learned I have to just keep fighting no matter what cuz I have 2 beautiful girls who mean more than anything else in the world they are my heart & soul so in order to go visit them I have to fight.
Thanks to all who read this Im glad I have a place to vent & know that there are so many other people like me out there & as my friend Phillip would say "we're special" & if it werent for him being there to answer ?s let me vent scream cry or talk to I dont know what I would have done (he is in his 12th yr of RSD/CRPS now I believe) so if there's anything I can help someone else w/please dont hesitate to ask, Thanks for reading & have a happy day

My CRPS II life as I know it...
 

I’ve made over a 100 posts and had yet to ever post here. It's long but here it goes, my CRPS II life as I know it.

When I was a young girl I slipped on some outdoor metal & concrete steps and a few days later experienced my first electric zingers of a bulging disc. Before my back surgery in 2004 I had seen and would get relief from chiropractors, but never saw a medical doctor when episodes arose.

On July 4, 2004 my mother passed away from a five year battle with breast cancer. My being only 36, an only child, my mother and I very close and my last living parent, this was a devastating loss for me. I was simultaneously going through a divorce. I have three children ages (at that time) 2, 11 & 15. My mother lived in West Texas and me in Colorado. 19 road trips to see her the year prior, and being with her for nearly a year up until her death, times were hard to say the least. After her death, I went back to Colo. bought a home, and back to TX I went to sell her home. While packing up the home she had lived in for 20 years, I started to go for runs in the mornings to try and burn off stress and the weight I had gain from my pregnancy a couple of years earlier, not to mention high cal road food for nearly a year too.

I started to have a nagging lower back ache. As each day passed it got so bad, I thought wow, this is really the most severe it’s ever been. I am out of state and put off an ER visit as long as possible. While at the ER the doc takes an x-ray, reads it, and comes to get me to show me the x-ray. He says “were you in a car accident?” I’m like nooooo. He tells me I have a very ruptured disc that is compressing my spine by 70 some odd percent and that I need ER Surgery, like right then. I say whoa doc, um.. I’m from out of state and I’m packing up my mom’s house, and well, yeah that’s not happening right this minute.

On December 4, 2004 I went in for an L5-S1 discectomy with an anticipated hospital stay of 3 days and a full recover in one year’s time. I woke up from surgery screaming in pain. Pain in my foot. My right foot could not tolerate even a sheet. My ankle felt shattered. I couldn’t move from the waist down for a week. I also could not lift my head after surgery for a week because the doc nicked my dura, and were afraid of a massive headache they couldn’t control. With this new condition, I really struggled to be a single parent of three, the youngest only two years old.

After a week, I slowly started to learn to walk again. The feeling running down my calf into my foot never came back. The pain I awoke from surgery did subside somewhat over the years, thank God! But today I have issues of spread, and tremors, and such. My limbs and fingers/toes get ICE cold. They turn all colors of the rainbow too.

Spread… over nearly ten years it has gone from right to left leg, then sporadically in my torso, and now very well into my arms and hands, neck and shoulders. Vision issues, intestinal issues, sensory (sound can be the worst) issues, joint problems.. if I kept going I would only sound like a hypochondriac. However all very real.

The upswing to my story is that I fell in love with a longtime friend, and it took five years of asking and I think my testing him, for me to say yes. I really wanted to be sure he knew what he was getting into. And much to my relief he is on board 100%. He waited me out and I am so happy for it. He gets it as much as anyone can who doesn’t have this. Life is funny with all it offers. We totally work around all things CRPS II. We keep a sense of humor.

When I first was Dx, three months after surgery, there was not hardly anything on the web about CRPS. Years later I was grateful to find this site. I am often asked by professionals if I have a support group, and well, I always reference this site. I always find solace here.

New here..
 

Hi! I am new here and just recently diagnosed with RSD in my left foot. Which I broke at the end of Oct. 2012 and it still has not healed :( I am starting my 2nd round of injections this Tues. in hopes that it helps more
then the 1st time around. I am also getting the epidural block! Never had one of those and I am kind of scared!! I don't know much about RSD so I am learning as I go. As far as pain, I have been dealing with pain for the past 7 years due to a car accident. That left me with neck issues, migraines, and lower back problems. I've felt pretty good for the past 1 year or so due to a great neurologist and a physical therapist but now I feel like I've taken a HUGE step back!! I think I'd rather deal with my neck and back issues and
not RSD, this is awful!! :confused:

Take care and stay positive!! :)

~B~

Diagnosed just a month ago
 

Two months ago my now husband and I eloped to return to a big reception. The night before the reception I broke my left foot in two places. I continued to walk, dance and wear heels the rest of the weekend (you only do it once, right??) before discovering just how injured I actually was. Just one short week after being put in a non-weight bearing boot my pain began to show RSD symptoms such as an increase in pain, my foot turned blue to the point of it looking dead, and the constant feeling of pins and needles. My original doctor simply put me on medical leave from my teaching job and told me to keep it elevated that it was simply from the break. My instincts proved true that something just wasn't right and I was blessed enough to have an amazing second opinion dr. that diagnosed it RSD immediately. He quickly referred me to the best anesthesiologist in the Charlotte region and I had an appt. with that dr. a week later. He said I'm lucky in that we caught it earlier than most so that I have a real chance at beating it. I'm going to beat it. I'm taking Lyrica 3x/daily as well as Nucenta. They are already helping me to walk--something I haven't done in over 5 weeks and what I thought was impossible with the electric shocks of pain in my feet and legs when I tried...that was a big achievement in and of itself. Today I had the first of 6-8 weekly sympathetic nerve block injections. I'm feeling hopeful. I have too much to look forward to with my amazing new husband and my own career and personal goals to let this stop me..maybe just slow me down a little bit to remind me of my strength.

Hello to u all I hope ur all havin better days..I have not been on here for awhile cuz Ive been laid up in bed only gettin up when I hav to. I hav been in tears tryin not to scream from pain & tonite is no better I really dont know how much more I can take of this..Anyone that has any advic er plzxx lay it on me cant take many more days/nites like this

Hello Heidi,

I'm so sorry you are having a rough time of it - I hope this flare passes soon!!

What kinds of things are you doing to help cope with the pain/depression/frustration?

I'm thinking you might get more support if you post this on a new thread on the main forum.

I know this sounds impossible when pain is high but, if there is anyway you can get up and even just go sit outside you will be happier. My doctor has told me more than once that the minute I stop moving I won't want to live.. I fear that so, no matter how bad the pain is I find a way to get up and out. I have had 6 recent hip operations so I can sympathize with your hip pain; have you tried taking Celebrex? Celebrex can help with the arthritis pain and reduce inflammation from CRPS.. might be worth asking your doctor for some samples since I see you mentioned you don't have insurance at the moment.

Can you get on state funded medical? How about reaching out to local churches or other services that may be able to assist in one way or another?

Dig deep.. gotta find something positive, something you enjoy that can bring a little sunshine to your face. Hang in there Heidi!!

Wishing you a better day,
Tessa

Hello Heidi
 

Sorry you are having such a hard time with the pain. If you can, ask your doctor about Ketamine infusions. There has been some success with that from trials with our military. Some have had a remission. There is also a ketamine compounded cream that may take the edge off. Bio freeze is along the same lines. I don't have RSD but PN, and I use all the above. Hang in there, and I hope this flair, goes away. ginnie

Hello, I'm 24 and have had RSD for 6 years, though I'm blessed to have an incredibly mild case. (Sorry, this is so long. :o The last paragraph is a kind of summary of where I am now.)

I've never exactly been what you might call coordinated. I think my older brother got my share of grace and athletic ability as well as his own. Despite this, when my best friend invited me to go snowboarding for her 18th birthday I went. I'd never been snowboarding or skiing and new that I'd hurt myself, but I also knew that I'd have fun. I reasoned that we can't live our lives scared of getting hurt or we won't have any life at all (I mostly still agree with this).

As you can probably guess, I did get hurt. I've had a lot of practice falling down in my life (see above comment about my brother stealing my coordination) and mostly manage do it quite well, but at one point I fell to my knees and my right knee hit a hard patch of ice. It hurt like crazy, but I was fairly certain I'd only bruised the bone and not broken anything. I iced it overnight and stayed off the slopes the next day while my friend continued to barrel roll down the hills and received nary a scratch. :rolleyes:

At my mother's insistence I went to the dr and he confirmed that I had bruised my kneecap. That was pretty much it for the next 6 months. My knee continued to be swollen and my pain didn't go away even a little bit. Most people would've gone back to the dr at least once in that time period and I admit that I should have too, but I didn't want to complain. See, my dad has lupus and has for most of his life. I know a lot of people with lupus who just sit around and do nothing because they hurt, but not my dad. He goes to work everyday (his job is very physical) and when he gets home he keeps moving and being physical until goes to bed. I reasoned that his pain was much worse than mine and I had no right to complain. I should also mention that this all occurred at a time when I hated myself and my long-term goal in life was suicide because I felt my existence only hurt those around me. (Don't worry, I'm better now. I feel neutral towards myself. :D)

So 6 months have hurting myself I went back to the dr. He sent me to an orthopedic specialist who proceeded to tell me that despite my inflammation there was nothing wrong with my leg and I was only faking it to try to get drugs. He admitted I was doing a thorough job because the muscles in my right leg were atrophied and sent me to physical therapy. I've never been a big fan of going to the dr, oh sure they're necessary, but you don't go unless there's something really wrong like you're arm fell off. So as you can imagine I was done with drs for awhile. I went to my physio because I've been raised with a lot of respect for the field and atrophy is never good, though I grumbled about it being a waste of money (my mom is a personal trainer and would have had me doing the same exercises anyway now that the atrophy had been brought to her attention). I do believe the physio helped, though it hurt and life continued. I graduated from high school--though I was in enough pain that I really don't remember much of my senior year--and got a summer job working in a factory.

That was horrible. It was great money, but I was on my feet most of the day lifting heavy things and being hit on. Everyday, I'd get home around 3 p.m. and go to bed. I just didn't have the energy to do anything else. And so I returned to the dr. He decided I had patellar something or other (forgive me, it was several years ago), basically the muscles and tendons on one side of my leg were stronger than on the other side and were pulling on my kneecap (though at this point most of my right leg hurt). He sent me back to physio.

As stated above, I strongly believe in physio, but first it's important to know what's wrong. This misdiagnosis and the treatment were bad news for me, largely because they decided to treat my pain with cryotherapy--in other words, lots of ice. Ice is not good for RSD. It's like treating an oil fire with water. I got worse and my RSD began to spread to my left leg. For the next couple years I continued to go to drs and they continued to play "pin the tail on the diagnosis". They, and I, dismissed the pain in my left leg as stress from babying my right though since my first round of physio I tried everything I could think of to stop babying it.

I did get lucky in one respect though. My depression had reached a sort of critical mass. I didn't want to do anything, I didn't even have the motivation to think of killing myself anymore. I was failing most of my college classes even though I'd always done well in school. After 8 years, I finally had to admit that I was depressed. (My mom had been telling me this for years, which is why you should always listen to your mother.:)) After an ineffective attempt to treat this biochemically and then a misbegotten stint on prozac, I was proscribed cymbalta. I believe this is the reason my RSD is still as mild as it is.

Still, being in pain all the time and not knowing why took a heavy toll on me. About two years ago I decided I only had one option. There was something severely wrong with my leg and no one could figure out what, but there was a simple solution. Get rid of the leg. I didn't want to cut it off, but I made my peace with it. I began to look into voluntary amputation and there was a light at the end of the tunnel. Just a little longer and I would be free. It wouldn't be an easy adjustment and my family and friends would never understand, but I wouldn't be in pain anymore. I could truly start to live again.

It isn't easy finding a dr who will not only agree to cut off what seems to be a perfectly healthy limb, but will do so quietly without alerting your father whose insurance your on and has worked at the local hospital longer than you've been alive. Without HIPAA it would have been impossible. Still I spent most of my workday scouring the internet. Then one morning I came into work to find the new issue of Time magazine on my desk waiting to be added to the system (I was working at a library at the time). The cover had the words "Understanding Pain" written across it in big red letters. I read the article hoping it would say something about voluntary amputation, but instead found the first description of RSD I had ever heard. (This was the March 7, 2011 issue if you want to read it.) It sounded a lot like what I was dealing with so I made an appointment with my dr.

And so, 4 and a half years after my initial injury I was finally diagnosed. I had told myself for a long time that if I only knew what was wrong I'd be happy. Just knowing was more important than treatment, but I can't explain what a blow my diagnosis was. For 4 years I'd put up with this. And just as I was losing the last vestiges of hope that I would ever not be in pain I had found an answer. So simple that I hadn't seen it at first, but my problems were about to disappear. I was going to be the happiest amputee in the world. And then all of that was ripped away. My dreams of a pain free life went up in invisible flames. I was crushed; crushed finer than the smallest grain of sand.

In addition to my longstanding battle with depression and the demon of RSD, I had to learn to cope with my guilt and confusion. I should be happy that my leg wasn't going to be amputated, but I wasn't. Luckily, humans are great at adapting and I did eventually.

So now I'm here. I'm 24. I have RSD in both legs from my thigh down to where it's just starting to spread into both ankles. I often get muscle spasms in my upper body (myoclonic seizures/jerks) as if I'm shivering and just can't stop. The only dr I've found who seems to know anything about RSD wants to torture me every 6 months with unnecessary EMG/NCV tests so I'm not really seeing a dr. I still struggle with depression, but am managing it most days. I'm trying to save up to go back to school and develop at least a grudging affection for myself.

Hi
 

hello everyone. I got diagnosed with RSD 18 months ago after falling and badly breaking 3 bones in my hand. I think that I in correct plastering caused it. went through 4 casts in a week. The pain started about 10 days after. It was excruciating and was burning. Went to G.P and he gave me morphine for it for a few weeks, came off morphine the pain was worse. Got diagnosed with RSD because it was swollen red and hot. went through a year of neuro physio to improve movement. It only improved movement slightly.

Now the pain has spread up my arm and now affects my neck. My hand is red and shiny and also have some muscle wastage. Have been seeing a specialist who has put me on buprenophine patches and gabapentin. I am also being considered for a spinal cord stimulator. Have to see another specialist as I also have mild Cerebral Palsy. They are now not sure if it is in my legs and want to know what is causing me problems with my legs.

This happened on the last year of teacher training, I don't know how I completed it. Think it kept me going and helped with the pain.

Before this I could walk with crutches, now I can't use that hand and can't use crutches. The hospital supplied me with a power wheelchair to get about outdoor. I still walk by grabbing furniture with good hand. Feeling a little bemused and fed up with it all, came on here to talk to other who know what it is like.

I also taking celecoxib for the swelling.

Willow542000
 

I think I'm in the right place...lol.
New member and had read my story(by someone else, one of the main members) She said everything I was going to say.
But I'm having strong body jerks and it's only when I'm lying down, resting or asleep. My arms have jerked so hard, they go all the up! Weird. Anyway, just looking for anyone who has this same problem. Going to a neurologist in the morning. I don't know what I have, just wanted to talk I guess.

Hey everyone! My name is Lindsay and I'm 23 years old and I'm a college student. I'm currently studying social work with a minor in psychology and will graduate with my Bachelor in Social Work next year in April. I plan to get my Masters and work as a medical social worker. I love to sing, dance, act, read, write, hang out with my boyfriend, family, and friends.

I'm here because I'm currently undergoing treatment at the Cleveland Clinic and my neurologist thinks I might have Reflex Sympathetic Dystrophy. He believes that my RSD was caused by my DVT (Deep Vein Thrombosis) aka a blood clot that I developed in my leg when I was 20 in August of 2010. The DVT was caused by May Thurner Syndrome, a rare but curable disease. I was diagnosed with May Thurner Syndrome in June of 2011. The DVT has done some damage to my veins. After my MTS diagnosis, I was great until December of 2011, when I was in a car accident and the pain started again. I saw more doctors and more hospitals than I care to admit. Thankfully, my pain is being successful controlled through Lyrica and a sympathetic nerve block that I had last month. The RSD diagnosis isn't official because I underwent a special punch biopsy at the Cleveland Clinic that is only done in a few other hospitals in the United States. The biopsy was done on August 5th and it takes 4-6 weeks to get the results back. Until the biopsy gets back, my doctor can't make an official diagnosis.

Throughout all of this, I've had the support of my amazing family and friends. God has blessed me with their support. Despite the pain, I've still done well in school and have made the Dean's List a few times! I still lead a very busy life filled with school, work, and many other things. Now that my pain is being controlled, my life is so much better. The pain that I've experienced was awful, awful, awful, awful!! It would leave me crying hysterically despite having multiple pain medications in my body. It wasn't until I started taking Lyrica that my life changed and the pain began to be controlled. I'm not 100% pain free. I still can't lie on my left side or my back for long periods of time without ice. However, considering a few short months ago, when sitting in a chair for more than 30 minutes would cause terrible pain, I can definitely say I've made progress!

I can't wait to meet all of you and am glad to be here! :)

Hello, glad to to have found this forum. I've been reading the threads over the past few months and finally decided to join. I was diagnosed with CRPS in my right foot & ankle earlier this year. It's taking over my life and I hope to find some help and support here, and advice. I will post my story in a new thread.

2nd Round RSD / CRPS
 

Hi group. I've been lurking now and then--most of the time not wanting to think about my situation whenever I could avoid it. I was diagnosed nine years ago with RSD after breaking both bones in my forearm. It was excruciating for several months, however, with constant physical therapy, I was able to beat it. This time, when developing it immediately after simply twisting my ankle 18 months ago, I was convinced that I could once again beat it. I think I've done pretty well. I've worked hard. But I have to admit--it's not going away. It's incredibly miserable. I have always been such an active and happy person with my kids and now it pains me in so many ways that I just cannot do the things I used to do. I need to get a job, but after trying and failing once before, I'm really nervous. I dread a shopping trip I would have once loved. How can I work an 8-9 hour day when I can't make it through a few hours at home without wrapping my leg in heat or taking a nap?

I'd love to hear suggestions for making it work at work. What kind of jobs do you do? Doesn't the pain make you bite people's heads off? I have to admit I get really snippy by late afternoon!

I'd like to say I'm still determined not to let it beat me. I don't have a deformed foot. I work at it every day, wrapping it in heat, stretching my toes out, strengthening it. But the last few days have been rough and my attitude is slipping...

Hello gamornin
 

Welcome to Neuro Talk. If you have been lurking, you already know there are a great bunch of people here. I am sorry you have RSD. I don't have that but PN. The RSD group will support you. Just from what you said in your post, you are having pain issues. This keeps you from a job, and doing those things that you want to do. My own take on it would be to seek a few new doctors, that may think outside the box. Do any of your medications work so far? Do you have a pain specialist? I see a physiatrist, who has specialized in pain first, and then treats the "whole" person. This type of doctor may be able to help you. They are a bit different than an MD. or DO. It would be worth it to call around and see if you can find a physiatrist, and ask if they specialize in pain. I hope that you can find some relief, so that you have less pain filled life. It isn't fun, and it does push a person to the limits. I hope you get more help. Again Welcome to Neuro Talk. ginnie:grouphug:

In excruciating pain Need help
 

Hey everyone I'm a 31 yr old woman I've had Rsd going on 2 years now its getting much worse . Especially in warmer temps. I have been to several neurologist none have helped or they act like I'm waiting their time.
The pain is so unbearable I can't walk most times I'm stuck in bed from the severe burning & throbbing in both my legs & feet which has also spread to my arms/ hands. I don't know what to do anymore or where to go everyone has a 2 yr waiting list. I also have a young daughter to take care of which I need someone to help me all the time. That is why I joined this site in hopes of getting some help or pointed in the right direction. If anyone has any information you could offer me of a doctor I would greatly appreciate it. I'm in the philadelphia area thanks