Reflex Sympathetic Dystrophy. (RSD)

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Colorado-girl
New Member


Date Joined Mar 2011
Total Posts : 4
   Posted 3/24/2011 12:56 AM (GMT -6)   
I have RSD and had a knee replacement at 37 yrs old. The prosthetic knee was defective and cause a bone infection, so after assuming the pain in my leg was just RSD
I realized i needed to see my surgeon. I had a second knee put on and was placed on a pic line w oxygen and had to administer meds through this line for 8weeks. Then Avelox for another 8 weeks. I has a reaction to the avelox, severe joint pain, etc..

I then decided to abandon my meds, Metha done, hydrcodone10-325, ambien, neurontin, celexa, cymbalta, blah blah...
I work as a system engineer and these meds are too much to be alert, but the pain becomes overwhelming... I am feeling depressed that i cannot get off the meds and perform optimally for my job, 4 children, husband, etc...
Does anyone else have RSD? How do you function? I try to ride my bike, but can only ride 10 miles and i am spent... The attacks although not daily, are enough to throw me back...
My son is in afghanistan and anytime there is something on the news i freak out and there is my rsd friend ready and willing to overtake me. How do you deal w hiding this disease?

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/24/2011 2:00 AM (GMT -6)   
Hi Colorado girl, and welcome to the Healing Well forums. By finding this place alone you've made one of the greatest discoveries you could hope for, especially when it comes to combatting your evil companion; chronic pain. You will find folks here warm and caring, always ready to lend an ear and their own personal experience. So sit down and stay awhile, and welcome to your new family!
 
RSD is now a days known as CRPS: Complex Regional Pain Syndrome. Do you know at what stage you're at? Typically there are 3 stages, and unfortunately most of us end up at Stage 2 simply because they do not always diagnosis it right away. Stage 2 is considered non-responsive, and all they can really do is treat your pain.
 
For me it all begin when I got injured on the job building slot machines back in October of 2007. What was supposedly tendonitis mutated into CRPS, but at the time no one could figure out why I was having this horrible pain in my right wrist and hand. Everything came back clean, so surely I was just another person faking it to try and scam the government out of money given it did start as a Workman's Comp case. Thanks to my WC doctor my case was closed, but my pain refused to go away.
 
Over 2 years later and my Pain Management doctor figured it out; by the time he did my pain had spread from my hand and wrist all the way up to my elbow. Now it is up to my shoulder and slightly into my neck.
I've been on narcotics as a result for about 3 and a half years now. They've tried other things on me, like Tramadol, Celebrex, Neurontin, but so far either I had adverse reactions or they didn't help. The Celebrex actually caused my heart rate to increase dramatically to the point where I would get light headed. Stopped that real quick. And the Neurontin made me excessively nauseaus. Recently they converted me from Loritab to Percoset, and that's all I take pretty much 4 times a day. Tomorrow I go to meet with a surgeon to discuss the risks of him doing a Spinal Cord Stimulator Unit. I've already done the trial, and found it to be a real life changer! But given where they need to place the paddle leads it's also risky.
 
I function as well as I can. I went from physically demanding jobs to being permanently disabled with CRPS at Stage 2. I can't really ride my bike, as the pressure on my arm to hold my handle bar is to much for me, and certainly trying to grab the brake lever is right out of the question! So instead I walk when the evenings are agreeable enough to it. I take my iPod as I found music to be a great distraction and a real motivator; it's easier to keep a quicker pace when your music is up-beat.
 
On a daily basis my pain levels are pretty high and affect me on my angles given my issue is now my entire right arm, which is also my dominant arm. There are days when it's a struggle to open a jar, and other days where I don't even bother to try and ask a family member for help instead... and that's even with a lil grippy thing to help me grab it.
Because I only take the Percoset I really don't notice the side effects. I drive my car, work with my friend's horse, and all without really noticing anything. My head feels a bit like swiss cheese these days, so I try to do mental exercises to try and retain what mind I have left. Some of it could be the meds, and others of it could merely be the fact that I'm not doing much other then word puzzles, number puzzles, crosswords, and reading as many books as I can get my hands on.
 
The depression you will find comes with the territory. Ask around and it's unlikely you will find a single person suffering from CP who doesn't have depression issues in one form or another. I know I don't take anything for mine right now, which is a combination of the narcotics and my pain attacking me, but I fully intend to next time I see my PM doctor.

From what I understand the Spinal Cord Stimulator unit has great success with CRPS victims, and it can restore an ammount of your life back to you, make managing your pain easier, and help you reduce the ammount of pain meds you need to take, if not completely other then as break-through control for when you have flare-ups.
 
Your son is in Afghanistan... congrats to you for being the proud mother of a military son, and please tell your son thank you, for his service to our country. My suggestion would be try and get in touch with the base chaplain, for whever your son is stationed, that way you can try and get in touch with some of the family members of other member's of your son's unit. While soldiers are deployed you'd be amazed at the support team behind composed of the spouces and family members of the various soldiers. This way also you might get put in touch with someone who has more regular contact with the unit and can help give you updates, depending on how sensative their information is on what they're doing and where they're at. What unit is your son with, what does he do? Alot of the action isn't nearly as hot as it was 8 years ago, but I do know how scary it can still be at times. Make sure if you get a chance to talk to your son you try not to let any of your worry be heard in your voice! You need to be strong for him. Laugh, joke, send him regular care packages! Find out what sort of ammenities his unit has where their at. Can you send him movies, or do you need to send him a portable DVD player too? Send him an Easter Basket! Some times it's the little things that keep them going. I used to bake cookies and send those constantly; home made goodies are a big hit. I sent books and blankets, socks and underwear, lights at Christmas time to help decorate the barracks, and even small cheap toys for the soldiers to hand out to the local kids. If they asked for it, I sent it.
 
The best way to deal with the disease we have is don't hide it. Do not be ashamed of what you're fighting, do not make it your dirty secret, your skeleton in the closet. I know for me one of the first things I did was go out and do oodles of research! I wanted to learn everything I could about what I had, especially given how rare it is. I wanted to know what my options were, I wanted to know the best treatments, the best medicines. I still do given how things change constantly! But never have I tried to hide it. Hide it in the sence of how much it hurts, yes, that I admit to, but hiding what I have if someone asks me "hey, what's the wrist brace for? You got carpal tunnel?", no. If I take the time to explain what I've got, what's wrong with me, perhaps one person will understand a bit better, perhaps more research will get done on ways to treat our condition, a condition that slowly claims your body and puts it in pain. While I can't say I'm "proud" of the fact that I have CRPS, by hiding it you're denying it, and that only gives it that much more power over you. *hugs*
 
I wonder if maybe also a SCS unit would help you; it is one of the leading ways they treat or condition. Also perhaps you just had the wrong "cocktail" of meds. I know for me with my Percoset the rules are no more then 4 a day, but if I don't need it, don't take it. Perhaps you were over medicated and that added to everything. Do you see a Pain Management doctor? Have you seen a therapist to talk to? Is your husband and rest of your family supportive, emotionally and physically, of what you struggle with?
 
Remember, you're not alone.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 3/24/2011 3:22 AM (GMT -6)   
Hi Colorado girl, and welcome. I've had CRPS/RSD for nearly 12 years. I injured my knee when I was 14 and the surgery I required triggered my CRPS, but I wasn't diagnosed until I injured my knee again six years later and again needed surgery on it. Since that time it's spread to the rest of my body.

I don't try to hide it - the truth is that I can't. I have major problems with oedema and colour change - especially in my legs - but my arms are often swollen too, and lately my face has taken to changing colour at the drop of a hat. I also have severe dystonia with mine, so I'm mostly reliant on a wheelchair (the alternative is walking on the tops of my feet). There is nothing to gain by hiding it - as Rhaevin said, it just gives this 'beast' all the more power over us. I do what I can to raise awareness...I've done TV and radio interviews, I'm building a website - everything I can do to get CRPS 'out there'

I'll echo Rhaevin in asking if you have a pain management doctor? Do you do physiotherapy for your leg? Have you had other treatments...sympathetics blocks, ketamine, etc? As far as medications and other procedures go, I've been there, done that and given the t-shirt to charity, so can have a go at any questions you might have.

Welcome again, and I hope this finds you having a lower pain day.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

JCG32
Regular Member


Date Joined Dec 2010
Total Posts : 62
   Posted 3/24/2011 6:06 AM (GMT -6)   
Hi I have rsd as well for 4 years and also have seen so many specialists treatment etc. A few thoughts and I think for me the way I cope etc has and continues to change through this condition.
Instead of going from all those meds to none have you looked in to a smaller amount that will allow you to function?
Are you under the care of a therapist? I can imagine that the stress and worry of your son being away is very hard. Even for me facing chronic health conditions and having someone to talk to can be helpful. I always says that being on meds for the mental side of things and therapy does not fix my physical pain but it does help me cope with it better.
I also don't hide my condition or pain. I am working on not talking about it so much with some people but if I feel scared,worried,angry to the people who do understand this condition I say it. I don't think it is healthy to stuff feelings cause it just builds up inside.
As for activity for me very and when I say very I mean it I built up the amount I could do. So when I started walks after many months in bed I started 5 minutes a week and gradually increased. On every level mentally and physically it was easier to take. I also think some is finding the right activity for you. I could not tolerate a bike with my rsd but can walk. So maybe try something different?
Hang in there
 

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 3/24/2011 6:34 AM (GMT -6)   
Hey Colorado girl and welcome to Healing Well! I am a Colorado native myself (although I am currently waylaid in Nebaska) I was born and raised there. I miss it alot!

I don't have rsd so I can't offer any advise, but I did want to welcome you. I hope you keep coming back. The support here is amazing. Take care.
Gentle Hugs,
Shannon

Fibromyalgia, Chronic daily headaches, Migraines, Possible Graves Disease, GERD, High blood pressure, Depression and Anxiety

Oxycontin, Percocet, Lopressor, Lexapro, Omeprazole, Promethazine as needed for nausea, Ventolin inhaler and Vitamin D3

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/24/2011 8:44 AM (GMT -6)   
CRPS/RSD folks -- I have a question, and it's not been scientifically proven, although my former CRPS physical therapist said I may be on to something. I know, as things get worse, we become subject to the dreaded hair/skin issues. To date I have had none. Oh, I have the tempature issues, where my right arm is colder or hotter then the other side, but the hair hasn't done anything funky, and colorwise, I haven't had any of the supposed greying or scaling issues.

My PM doc is wondering if it's due to the fact that I take a Hair/Skin/Nail daily suppliment. I had originally started taking it to try and help my hair against this misserable desert heat, but at one appointment a year back my doc commented how I didn't have alot of the more normal symtpoms, always checking my hair and skin. So I mentioned to him that I was taking the suppliment (I was sure I'd told the nurse when she asked what I took) and he definately things it might be helping. I've not been able to find any research on the validity of this, but if something so simple helps I'd be a fool to not share it with you.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant

Colorado-girl
New Member


Date Joined Mar 2011
Total Posts : 4
   Posted 3/24/2011 9:52 AM (GMT -6)   
Thank you to all who responded! It is good to have othere
S out there with the same challenges to talk to. I have a spinal cord stimulator. I had it put in about two years ago, and it has not helped me at all. I currently just leave it turned off. I initially fell snowboarding and crushed and powdered the bones in my right wrist, that led to RSD. It took some time for someone to realize the reason my cast was making me scream was RSD. I have had approximately 23 nerve blocks, the first ones working with additional blocks being useless.
I believe i may start the spinal stim again since i did have the knee replaced, and the infection is gone now.

I have had RSD for 5 years now and have moments where its under control, and moments where i am in bed screaming. I am stage 2, so nothing really helps but the methadone and hydrocodone. What is strange is, some days i am a maniac cleaning, working long hours etc, but then if i do too much or stress i havet a sort of RSD fit where i am in bed arching my back screaming. Its such a horrible fit of pain and non-control.

I am flying into my sons base to see him in a few weeks and driving back to colorado w him for his leave time, so seeing that kid will do wonders. I have two grandbabies on the way so that joy should help. I am only 42, but had my children young, so now they are grown and i get to enjoy :)

I find itninteresting there are so many people with tjis disease, yet it is rarely talked about. There is so little a doc can do. I used to see an anesthesiolgist for this, but now my pain doctor is a neurologist. She is working with me in a cocktail that works, and neuronitin does this well, but i cannot function at work on it at all.

I am so appreciative of the feedback!

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 3/24/2011 10:05 AM (GMT -6)   
Rhaevin - thanks for sharing that. It's probably too late for some of my skin issues...the skin on my feet and legs is dreadful, I've lost all the nails on my left foot and those on my right aren't in great shape either. I've lost most of the hair on my head a couple of times too.

Is interesting that you guys talk about stages...it's no longer really considered in those terms here and just looking at myself I can see why... I have elements from all stages and have done for several years...

Colorado girl - did you have a good trial result for the stim before you had it implanted? Sorry to hear that it hasn't helped you.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Colorado-girl
New Member


Date Joined Mar 2011
Total Posts : 4
   Posted 3/24/2011 10:17 AM (GMT -6)   
I did not have a good trial, i never have any trouble with my doctors, but the rep for the stim was a jerk.... He tried a few times, but honestly that buzzing in my leg made me go crazy! I wanted to climb the walls and scream. My doctor really believed in this stim deal and promised me it would work, but it really doesnt help w pain and i wonder why others have such a great response...
Do most people with CRPS still work? I work 50 hours a week, do all the housework, mainly because i am a clean freak. But, days like yesterday and today this disease is intolerable....
i just want to find a way to be a normal person again...

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/24/2011 10:29 AM (GMT -6)   
Colorado Girl, I second what Laura said; did you have a good trial? You mention it's not working at all now. Have you been in touch with your rep to get it reprogrammed a bit to help? Is it the coverage, is the sensation not enough? Did you have the normal leads implanted or the paddle leads, and where about. I've heard that the majority of the time they use the normal leads for cervical implants (if you're like me, that's where they'll have put them to handle your arm, is way up into your neck) they are prone to migration issues, big time! And of course as soon as your leads start to go south on you, you can be guarenteed your coverage is gonna go ker-poof! I'm asking mostly because I see a surgeon today to talk about doing my implant. The doctor wants to use the paddle leads, but that requires a lamectomy, and most normal surgeons haven't good success... hense the reason I'm seeing a spine and brain specialist. But my trail was wonderful, and my rep was super cool, getting to me the very next day to make adjustments so I was getting the exact coverage I needed, trying various pulse lengths and strengths.
 
If you didn't have a good trail there's no way they should have bothered to do the implant. Of course what exactly was wrong with your trial I'd be curious to know. I know I had issues, but it was all stuff I've been told will be resolved with the more permanent, sutured leads. But on average these days, if your trial doesn't grant you a certain percentage of improvement, you don't get the implant, plain and simple.
 
I realize you've been dealing with this longer then I have, but the big thing I have learned in a short time is to pace yourself, even on your good days, if for no other reason so you don't get blind sided by that flare up at 2am.
 
Laura, I'm not surpried they have since stopped talking about it in stages with where you're at, but it's obvious you have not hit Stage 3 yet, just a real ugly Stage 2. I promised myself when I first researched this I would do whatever it would take to never reach Stage 3.
Oh, and Colorado Girl, you are very right. For such a rare disease (what, something like 2% of the world population) we all seem to manage to find one another and cling together like survivors in a life raft. If it helps us all keep our heads above water while we try to cope with this, you can count me in.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16765
   Posted 3/24/2011 10:54 AM (GMT -6)   
Hi ColoradoGirl and welcome to Healing Well's chronic pain forum. I am very glad that you have found the forum and met up with some of the members that has RSD. It can be comforting to have someone to talk to that has the same medical issues as you do, that know and understand what its like living with RSD. Lots of people have no idea about this animal, like you said, it is not one that you see out there a lot. Of course now it has been given another name but it is still the same horrible problem.

I remember when it was first being dx'd here and no one knew anything about it and only a couple of drs around here were attempting treatment. They were anesthesiologists and getting treatment was nearly non-existent because the insurance companys said it was not a condition accepted by the AMA. The treatment for this condition has not gained much either except the use of the SCS units. I am very sorry to hear that the SCS stopped working for you, but that seems to be a trend now with the units. They start out working but over a period of time they help less and less.

I am very impressed that you are able to work and then when I read you are able to ride a bike 10 miles, wow, that is something. You should be very proud of yourself for the strides you make on a daily basis. We can all understand not wanting to take medication however, we do deserve some quality life and if taking medication helps us have it thats ok. I am assuming if the dr lowers your medication dosage then they will have no effect on your pain, you are caught in a real catch 22.

Anyway, I wanted to pop on and tell you welcome aboard. Please keep us posted on how you are coming along.
Moderator Chronic Pain Forum

Colorado-girl
New Member


Date Joined Mar 2011
Total Posts : 4
   Posted 3/24/2011 10:55 AM (GMT -6)   
I have two leads sewn into the middle/bottom of my back. I did not consent to the leads in my upper spine due to the bone needing to be removed. The rep tried to program it, but to no avail. The trial went sbouth due to the leads moving and i had to turn it off. My doc wgas just convinced this would help me, but to be honest, i think he was just interested in making the money.. Horrible thing to say, but i left his practice because of this. My husband is a doctor, so i had his oversight, but this is not his area of expertise. I may need to call the rep since my bone infection from the first knee was found. This could haveh been why my outcome was bad.

I was seeing a therapist, that does help, so i will find one today and start again. It is important. I believe diet plays a role. The attack i had last night though was really horrible. Different than usual. Typically i just sit in pain, this caused me to be in bed arching my back and sceaming from the nerves firing. Has anyone experienced that before? A large dose of neurontin, then methadone and hydrocodone took the edge off.
I am still feeling it all over my body, so that scares me. Not sure what caused this.

Its so nice to have this forum!

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 3/24/2011 2:27 PM (GMT -6)   
I'm sorry that you had an attack last night - I hope that it has started to settle now. And yes - I've been there, though it's rare for me to scream...I tend instead to black out when my pain gets that bad.

If you don't mind me asking, without a successful SCS trial, why did you decide to go ahead with the permanent implant?

Rhaevin, if you go by staging guidelines I would be stage 3, heading towards stage 4. I have severe dystonia with mine - if I try to walk, I have to weight-bear on the tops of my feet because of the contractures in my feet and ankles, and I now also have full body spread & internal organ involvement, low-grade immune system involvment, orthostatic hypotension, etc. :( It's already come close to killing me once. I'm actually better now than I was - I agree 100% with Colorado girl about diet playing a role, because that's what saved my life.

Oh, and working - no, I don't. I'm on a full disability pension. I'm actually a fully qualified vet - I got through vet school with CRPS in one leg, doing clinicals on crutches, graduated at the end of '07, started work and then my spread began in mid '08. As I said, I'm mostly reliant on a wheelchair because of my dystonia, and the extra health issues my CRPS causes make it pretty hard to do anything physical. I get sick all the time - almost every time I get a cold, I get a secondary infection and wind up with bronchitis - or worse, pleurisy or pneumonia, I'm lucky to get through 3 or 4 weeks without a bout of cellulitis. I do some voluntary stuff for one of my old lectures - just sorting x-rays and am putting together some student cases to keep my brain active. I'm hoping to get some paid work doing the same for the path department - but will still be work I can do at home, in my own time.

Post Edited (CRPSpatient) : 3/24/2011 1:42:53 PM (GMT-6)


Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/25/2011 1:20 AM (GMT -6)   
Like Laura I'm permanently disabled too; everything I trained for and did required the use of my arm, and strength in it to boot. At 18 I was certified as a Massage Therapist, but there's no way I can do that now, as a one handed technique isn't really an option. I also went to school to be a dealer (I live in Nevada near Vegas) but my hands refuse to work the cards much less the checks/chips, so that's out also. I can't even really train horses anymore, much less drive carriages/wagons/coaches; all thanks to my CRPS destroying my dominant arm.
 
Laura, I did not know there was a Stage 4?!? It was explained to me that here are 3 stages: Stage 1 is usually when they can reverse it, or get it to get into remission, Stage 2 is non-responsive, and Stage 3 is when things get so bad they are forced to consider amputation. I promised myself I didn't care about the pain, but I would never let myself get to Stage 3.
 
Colorado Girl, for me without putting the leads up into my neck it'd be pointless for me to get the SCS implanted. I had a successful trial, with the leads all the way up by C2. The surgeon I met with today, the spine/brain specialist, has told me his process involves removing a small section of the lamina so they can position the paddle leads properly, and then he sutures them into the ligaments in that area. In all the years he's been doing this he's only ended up with two patients that have developed infections, and only one that actually ended up with reduced useage to one side of her body. Lead migration though is the number 1 cause usually to malfunctioning SCS units, which is why if I'm going to do this I want to make sure I don't run into that as a problem.
 
As for the pain attacks, I haven't had one like Colorado Girl described; I wasn't arched and screaming in pain... but then I rarely scream in pain, normally I'll bite my tongue, my lower lip, grind my teeth, whimper, or just let the tears stream silently down my face as I struggle to get things back under control. I did have one attack one night, in the middle of the night (while my boyfriend was with me at least) that had me curled into a tight ball ... all my muscles had contracted, so I was pulled into an extreme fetal curl, trembling violently to the point where I woke Mr. "I sleep through anything". In the back of my head I felt guilty for waking him and scaring him at the same time; I know he felt helpless to protect me. All he could do was hold me gently and stroke my back while murmuring to me, and it was enough to help me gain the focus to get things back under control, or as much as possible. Once I go all my muscles to relax I passed back out and went back to sleep. That's normally what happens too; when my pain levels get so bad I don't cry out or scream, not even a whimper or tears.. I just lay down and pass out. My family knows if they find me curled on the couch, bundled under my thick blanket, just to leave me be. I normally won't sleep more then two to three hours when this happens, and it happens almost every day about mid-day. cry
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant

venus2471
Regular Member


Date Joined Apr 2011
Total Posts : 32
   Posted 4/21/2011 10:45 PM (GMT -6)   
I to have CRPS/RSD and it's not fun. The last 10 years of my life have been hell. No one understands except a friend with MS. I'm at the stage were I look fine on the outside but if they could just see the inside they would be shocked. After several years of going to doctors and being used as a guinea pig I finally found a Pain Medicine M.D. that diagnosed me. My symptoms fit the dx to a tee. I try so hard to do as mush as i can but it seems like I'm doing nothing. The worst thing is my last child at home is 10 years old (yes, it all happened as a result of giving birth to her). I feel that I am cheating her and my partner out of a life they deserve. She knows nothing except how we've lived for the past 10 years. I can't go anywhere or do anything with her. My doctors and hers tell me it's o.k. but having older children I can't accept that. I am so lonely and depressed with no one to share my experience with or to learn how to cope. That's what I want the most. Give me knowledge and the tools I need to live with this condition and things would be better. Give me hope and even a small glimmer of my life back. Please God send an angel to help me with this horrible thing that I've been given for whatever reason you may have. Please.

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/22/2011 12:54 AM (GMT -6)   
Venus, welcome to our little family here. You will find that everyone here is very supportive, no matter what their pain problem, and also as you can see there are a number of us here with CRPS/RSD.
 
I'm so very sorry that you've been trying to go this alone... CRPS is a beast. How recently were you diagnosed? Have you had any treatment? Are you on any medications for it? If you have any questions at all, please just ask. I think between those of us here, we (sadly) have some 20+ years of experience with CRPS so together I'm sure that we can come up with some answers for you.
 
Look after yourself - if you need to cry here, vent, rant, rave, whatever, do it. We know what you're going through and we're here for you if you need *hugs*
 
Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/22/2011 9:40 AM (GMT -6)   
Venus, just as Laura said, welcome to our little family. I too have CRPS as you may have seen from my earlier post; three and a half years now and you can see how much it's robbed me of. I too have a little boy. He's 8 now, but he was 4 when this all started. As a single Mom it's been hard to explain to him what's going on. He was so used to a certain way of life with me, but then that all changed. Now I can't rough-house or wrestle with him, can no longer play video games with him... so much that we used to do together is gone. He understands Mommy has a "bad arm" and frequently I hear from him, "I hope you'll get better soon". It makes me cry every time because I wish it were true, I wish I would get better. But I know the truth, I've seen how much this has progressed in a short ammount of time, and while I'm looking forward to my SCS implant next month I know at the same time it won't give me back everything I've lost, but at least it'll make the pain bearable, and allow me to have a little back as well as hopefully decrease my meds so I don't always feel like I'm in a fog.
 
For the first time in my life, just last week, I started anti-depressants. Even with a fantastic caring family the depression still got to crushing for me and I was forced to reach out for something to help. Maybe the surgery will help with my depression, maybe it won't, but until I find out I need something to help keep me together.  Maybe ask your doctor for anti-depressants if you're not already on them, just remember they tend to make you worse before they start to help. If you're not on pain meds you should be. If your current doseage isn't working, advocdate for better quality of life -- after all you have kids that need you. Explain as much to your daughter as you're comfortable with -- I know my son is all to happy to help his Momma out, and it gives us time to bond at the same time. There are little things you can still do with your daughter. If you cna take her to the park, do so, and take a camera so you can snap pictures. You can sit and have story time with her at home or enjoy the colors of spring together.
 
If there are any questions you have, ask, Laura and I will be here to help you as much as we both can. Just remember, you're not alone. *gentle hugs*
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Have seen several specialists; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 finally diagnosed CRPS - Stage 2
Permanently disabled, on Oxycodone and Celexa.
February 2011 successful SCSU trial
May 2011 SCSU implant surgery

venus2471
Regular Member


Date Joined Apr 2011
Total Posts : 32
   Posted 4/25/2011 3:41 AM (GMT -6)   
Thanks for the warm welcome Laura. I was only officailly diagnosed with CRPS about 6 months ago. I've been suffering with it for about 5 years. Maybe a little earlier. It just crept up on me. Started in my wrist then would go away and come back in some other location on my left side. For the past couple of years it's effected my entire left side completely. Occasionally it wil migrate to my right side.
 
My neurologist had put me on trleptal, neurontin and a couple of other things (I can't remember what) thinking the pain was related to the stroke I had. He kept telling me to go to the Pain Medicine M.D. I am now seeing but I was very resistant. I worked in the Health Care Industry as an Administrator and know first hand about all the quacks that are out there that specialize in Pain Medicine. As such, I resisted going. My primary care provider tried her best to help me. The only thing that worked was fentynl patches at extremely high doses. At that time I was being so over medicated because of my complex medical history that I was literally a walking zombie. I couldn't handle that with a 10 year old child so I took myself off of everything except the meds that I knew I really needed for my heart and stroke. I was good for awhile then the pain came back full force. It is to the point that it hurts to wear clothes because it triggers pain just by the cloth rubbing my skin. Anyway, my primary care doctor finally insisted and convinced me to give this new doctor that she was getting a lot of great feed back about a try. I did. OMG what a blessing she has been. After she examined me on my first visit and explained to me what I have I broke down and just cried. She explained to me how our nervous system handles pain and why I got to where I am. She totally understood that I couldn't be a zombie again and started out slow to try different drugs on me until I found the right mix. We're still working on it but I'm much better then I was. In addition to meds for my heart, stroke and psych meds (for depression, PTSD and anxiety brought on by the health issues I'm dealing with) we have finally figured out that I needed back on fentynl patches and a pain pill for break thru pain (i can't recall what it is at the moment). She also put me on Cymbalta but I found that it wasn't working and my depression is pretty bad at the moment. As such, we decided that I would go back on Sevella and see how that works. While it's not for depression, I found that when I was on it before it took away that deep, dark despair you feel when you're dealing with pain and other health issues. It's still one step at a time for now in trying to figure out what meds I need. Baby steps. Once we get that figured out then she said she wanted to try mild PT to stimulate my muscles.

The hardest part for me is not being able to do anything active with my daughter or partner. It's taking a real bad toll on our family life and my relationship with my partner. When I see that happening I get really depressed/stressed which in turn triggers more pain. What a vicious cycle we deal with. No one understands what is wrong with me. My partner does his best to be supportive but after 10 years of this I can see that it's getting old for him. My daughter just goes with the flow since this is all she knows.

This is how sad it is at the moment. I literally live in my P.J.'s all day. I am either on the couch watching T.V. or for some reason, being on the P.C. playing FB games helps distract me from the pain. I will go 4-7 days without bathing. I have completely given up on taking care of myself. I don't leave my house except to go the doctor. When I go anywhere else, I get panic attacks. Part of this is because I've fainted on several occassioins from my heart condition and had to be taken from the store by ambulance to the hospital. The other part is it literally wears me out. I can't even walk/make it through the grocery store without being totally worn out and in pain. I can't drive most of the times because I'm too dizzy or lightheaded to drive. I will not take the risk of hurting anyone. I can't clean my house. I'll try by sweeping one room, then resting, then I move on to the next or by doing a few dishes, then rest, then do a bit more. I have difficulty cooking. Not only does the meds cloud my mind and I can't remember how to cook but I can't lift anything heavy such as a skillet or bag of sugar. My partner has to take up the slack. I am so tired of this lifestylet but don't know how to get out of it.

Not only am I ill but both my partner and 10 yr old have ADD. This means I have that burden too. I can't go to school meetings yet I have to be my daughters advocate to ensure she gets the education she deserves & needs. My partner was diagnosed at the same time my daughter was. He's dealt with ADD the best he could his entire life w/o knowing what was wrong. Now he knows and is resisting getting the help he needs for it.

Anyway, I'm getting tired and depressed just writting about all this stuff. Today is Easter and I was in such horrible pain. Yet I had to manage to put on my fake face to go with my family to an Easter egg hunt at the beach. I am worn out but can't sleep. I am in pain. I am resentful that my partner is sound asleep and I had to put my daughter to bed tonight. At that time she informed me that she needed her school clothes washed because she didn't have any pants or bra's to wear tomorrow. I did it but it hurts. My brain is racing. I really resent the lack of help at the moment yet I know he was exhausted or he wouldn't have gone to sleep so early.

Is this the way life is when you have CRPS/RSD? Is this what I have to look forward to? How can I change this vicious cycle I'm in that seems to be deteriorating daily. I'd appreciate any input anyone has for me. I'm good at handling constructive critisism if it's called for so don't hesitate. I know I rambled on a lot but it's because my mind is racing.

I just want to say to anyone that reads what I wrote 'THANK YOU'. It feels good to know I may have found a place to vent and learn. Thanks again and have a great week.

Aloha,
Venus

Post Edited (venus2471) : 4/25/2011 3:08:04 AM (GMT-6)


venus2471
Regular Member


Date Joined Apr 2011
Total Posts : 32
   Posted 4/25/2011 4:20 AM (GMT -6)   
Rhaevin, Thank you for the welcome. Again, I see I'm not alone in my situation since you have a child too. You know what I'm talking about. My daughter has known nothing but me being ill from the day she was born. I had a heart attack two weeks after giving birth to her and a stroke a couple years later. While rare, this was all caused by giving birth. She is pretty good about knowing what's going on with me. She's had to learn how to dial 911 and has been there with me when i pass out in a store. When I'm hospitalized she comes and visits and is right at home. She know's I'm in pain and is so sweet when she see's that I'm exhausted. She'll say Mom you need to go to bed now. While it's precious it's sad that a child has had to live this life. Unfortunatly, I'm at the point that I can't drive most the times. I bought a bike in hopes that we could do that but was told by my Dr. to be careful about doing to much strenous excersise or the pain will be worse. She say's after I am able to strenghthen my core I MAY be able ride with my daughter. Isn't it amazing how children are more understanding and intuitive about what we're going through then adults? I find that amazing. They are truely so inoccent and precious. Thanks again for the support and I look forward to chatting with you more in the future.

Post Edited (venus2471) : 4/25/2011 3:24:17 AM (GMT-6)


Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/25/2011 10:34 AM (GMT -6)   
Venus,
 
My son is boarder line ADHD, so I understand being your child's advocate. I also understand the level of care your precious girl must require too, due to activity level. Oddly the focus of caring for me seems to keep my son pretty level and calm. I'm grateful, but sad, as like you I can not play video games with him, I can't even ride my bike with him due to the fact that trying to use my right arm/hand causes me to much pain. Plus it doesn't help how spacey I can get because of the high levels of oxycodone I take. It's amazing how my son seems to remember many things, where I'm lucky to recall what I ate or did the day before. He is my anchor to the here and now, and my drive on the days when I have none. It's hard some days, and I hate when he sees me cry; it distresses him so much. My 8 year old son should not have to comfort me when I break down into tears from the pain and the hopelessness.
 
One of the big things I was told was that you have to fight against CRPS, you can't just roll over and let it defeat you. I know unfortunately the depression makes this difficult, the pain makes it hard to stay motivated to do things. Do you have any hobbies you like to do? I know Laura makes teddy bears, and I like to knit of make no-sew blankets. I don't do beading anymore, it's to hard on my hands, but I'm still "crafty" in other ways. The point is it's something you do, that you enjoy doing. Most of the stuff I make I give aways as presents; makes me feel good to see friends and family smile when they receive one of my hand made gifts... more so because they know about my disability. You need to find something you can do -- doesn't matter how long it takes you -- just something to help keep you busy.
 
Your Pain doc sounds like she's got you on the right path; looking for the right mix of meds, and eventually starting you on some PT. I know your head tells you your hurting, but you have to fight this, Venus, so your muscles don't waste away. I know it's hard, but don't let this evil disease beat you.
 
As for your question about is this what your life will be like, I wish I could answer that. I know mine seemed bleak for the longest time; the pain continuing to spread, no one wanting to share my life with me because of my issue, etc. But I have my family, and I have my son, I have good friends here, and I spend most of my mornings at a friend's place helping take care of her animals -- chickens, duck, geese, goats, horses. I'm getting to watch my son grow up, and shape the man he will become. I've got up coming surgery for my Spinal Cord Stimulator in a few weeks, and hopefully that will restore back to me some of my previous life. I try to walk in the evenings as the desert heat isn't something I do well in with my CRPS, but the stars are beautiful, and it helps keep me in shape. I've thought about voluntering at the local animal shelter, but know it'd be to physically demanding for me. Still, I could foster instead as a way to help. Again, it's the little things that are fulfilling and make me feel useful, that gives me something to look forward to, something to do. Something to help keep me going.

venus2471
Regular Member


Date Joined Apr 2011
Total Posts : 32
   Posted 4/25/2011 11:36 AM (GMT -6)   
Thanks Rahevin! So many similarities in our story. I do have hobbies. I haven't been able to focus on them for long so I've put them aside for now. It takes everything I have just to put my daughter first. She's my motivation. But it seems I do so little for her. If/when the pain from the CRPS gets under control, I'll be able to to more. I am looking forward to that time. Thanks for all the info you shared. It's great you have a good support network. I don't. My extended family and even my older kids don't understand it all. My Dr. suggested that I start using the phrase "that's an area not open to discussion". With all the bad press about stars abusing pain meds I don't dare tell any of them I'm back on Fentynl. My oldest daughter was angry at me one day and basically called me a drug addict. They just don't understand so it's better that they not know about it. I do have a good friend that has MS that has been a BIG help to me. She has tought me so much. I am also very siritual and rely a lot on my faith to see me through the rough spots. I didn't even think or know about muscles wasting. I definitly don't want that so I will try to do a bit more everyday w/o overdoing and hurting myself. Thanks again. God bless you and you son. I will keep you in my thoughts for you surgery to go well. Aloha for now.

Venus

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16765
   Posted 4/25/2011 12:22 PM (GMT -6)   
Venus2471, hello and welcome to Healing Well's chronic pain forum. I am glad to see that you have found some of our members that suffer with the same horrible disease that you do. It is a relief sometimes to have people that understand fully what you go through dealing with CRPS.

What we like to suggest is that all new members do a short intro post so that all members can give you a proper welcome aboard. By posting on an existing thread sometimes not many people will see it and know you are here. Perhaps you can copy and paste your original post above into a new post.

Again, welcome aboard and I am glad that you have found us.
Moderator Chronic Pain Forum

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/25/2011 9:04 PM (GMT -6)   
Oh Venus, I'm so sorry that you've had to experience that, especially from close family. I cannot even begin to imagine the hurt it must cause you.

I don't know if it would help you or not, but I did post a link for another member recently to some CD uploads for a relaxation method called mindfulness. It helps teach you to become more aware of your own body and can help sometimes with pain relief and controlling flares. If you're interested, I'll go looking and try to remember where I put it.

Rhaevin's point about PT and muscle wastage is so, so important - I'd forgotten to make a note of it here, so I'm glad that she jumped in. The other thing about PT and CRPS is that you have to kind of teach the brain to recognise the affected parts of your body as normal again ... I don't know if you've ever found that your wrist/arm or other affected areas sometimes feel as though they just don't quite belong to you, or you're not quite sure where they are? I know that I often feel as though my legs (my worst affected areas) are completely alien to me, and apparently this is a very common part of CRPS. PT helps with this.

Rhaevin... will be thinking of you with your SCS surgery. Mine's getting too close for comfort now... I'm really feelingquite sick/scared about it. This time in three days I should be out of surgery.

Laura

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/26/2011 12:08 PM (GMT -6)   
Venus, I found this this morning while doing some research for my neighbor who was recently diagnosed with Lupus. You mentioned how hard it was for your family to understand your pain. I think you could use this "theory" to help explain your pain to your family. It's a great article titled "The Spoon Theory". I hope it helps. I can also send you the link to the article in Time Magazine that was done on chronic pain and my story if you're interested in sharing with your family. It's so important that they understand.
 
I think alot of us can relate to "The Spoon Therory".
 
 

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16765
   Posted 4/26/2011 12:11 PM (GMT -6)   
Venus, some of the things you said in your post about not having support hit home, I remember some that all too well. May I make a suggestion, find yourself a good psychologist. One that deals with medical issues. My PCP insisted that I seek help with a psychologist, not a psychiatrist, and let me tell you, she was a blessing to me. That was probably one of the best recommendations that could have ever been made to me. You have got to somehow pull yourself up out of that hole you are slipping into. Not taking care of your basic personal needs it not a good sign at all and I think you know this. Please consider getting help. Hugs.
Moderator Chronic Pain Forum
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