New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

kdmack
New Member


Date Joined Mar 2011
Total Posts : 9
   Posted 4/2/2011 6:53 AM (GMT -6)   
Hi to all,
I am new to HW and so far have found current discussions very interesting and helpful. I have been suffering from chronic pain 4 8 yrs now. I originally hurt my left shoulder at work. I have had 3 operations now and in 2008 was diagnosed with CRPS however looking back have had CRPS symptoms for alot longer than that. I basically am at my wits end with this intolerable pain (as i know alot of u guys know where I am coming from) I have seen so many Drs and specialists am on alot of pain medications and i have had alot of tests I have also had failed nerve blocks etc etc. My pain specialist wants to implant a SCS unit however neurosurgeon advised against it. Do any of you guys have any advice on these units ? Does anyone have one implanted and find it works ???? Originally my pain started in my left shoulder now it involves my whole left side, shoulder, into the back of shoulder, neck , arm wrist and hand. I have also in the past 12mths or so started getting pulsitile tinnitus in my left ear ( can intermittently hear my heart beat in my ear ) very annoying not as bad as this terrible pain though. I am currently working BUT am not coping very well at all and constantly having time off work due to +++++ pain does anyone have any suggestions re: treatments any help would be greatly appreciated thanks

kdmack
New Member


Date Joined Mar 2011
Total Posts : 9
   Posted 4/2/2011 6:56 AM (GMT -6)   
sorry thats supposed to say suffering from chronic pain for 8 yrs now the way i wrote it makes it look like 48 yrs

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5004
   Posted 4/2/2011 8:26 AM (GMT -6)   
Sorry, I don't know anything about SCS, but I'm sure someone will get back to you on that, or you can read threads in the search box.
The pulsatile tinnitus needs to be checked out by an ENT doc. It's probably no big deal, but it rarely can be from carotid artery aneurysm or dissection. I have the regular squealing type. Mine's worse on the days after I take my 3 X week Crestor.
Alcie
 
 

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/2/2011 7:51 PM (GMT -6)   
Hi, and welcome to HW. I've had CRPS for nearly 12 years - mine started after an arthroscopy on my right knee when I was 14, but in the last few years it's spread to my entire body.

I had my first SCS implanted in 2006. I've had mixed results with it. For my right leg, it's been good. Prior to the implant I had very severe hypersensitivity/allodynia - to the point that I couldn't wear socks or shoes, couldn't bear anything at all touching my leg, couldn't take any weight on it. Within a few weeks of my permanent implant I was wearing shoes and walking with crutches. In 2008, when 'IT' spread to my left leg, I had a second lead placed, but it moved very soon after surgery and within a few months I had a revision op to have it replaced. This interfered with my first lead as well, so I was only getting really patchy coverage in my right leg. I also have a lot of problems with the newer lead pressing on the ligaments between my vertebrae, and scar tissue irritating the nerve roots - the last surgery also spread the CRPS to my back. That said, my tech has recently been able to get good coverage back into my right leg.

Because of the problems the second lead is causing, I've decided to have it removed and a new type of lead implanted instead - I actually have to call tomorrow for an appointment to discuss the surgery.

The SCS is certainly a treatment of last resort. If you do consider it, ask that your trial continues for as long as possible, and make sure that you yourself do as many of your normal daily activities as possible - to get an idea of how much the SCS is likely to help you.

The other treatment option I'd suggest, if you haven't tried it, is ketamine. I've had three treatments now using the 'awake' method, which involves 5-7 days on low dose IV ketamine. Personally I didn't have a lot of success on the whole - one infusion dropped my pain to a 4-5/10, but I'm very sensitive to it and it makes me very sick - but I know quite a few who've been greatly helped by it, even gone into remission in a couple of cases.

If you've any questions, just ask :)

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.

kdmack
New Member


Date Joined Mar 2011
Total Posts : 9
   Posted 4/2/2011 11:28 PM (GMT -6)   
Thankyou both to your replys and helpful information, Laura i have heard of ketamine infusions I read about it a few years ago but I'm not sure if it is available here in Australia I know the literature I read they were getting excellent results with the ketamine however they said it was quite a risky procedure. My pain specialist has not ever even mentioned to me as an option. I have had a nerve block before about one year ago but made no difference to my pain. Then the pain specialist suggested the SCS, have you had any problems with the SCS as in infection ??? was it having the SCS placed in your back that caused the CRPS to spread to your back or does this awful thing just keep spreading ????? None of my Drs have ever really told me much about this evil thing, I have read quite a bit about CRPS only recently though in the last few days as one of the drs I was seeing basically told me not to read to much about it. With the ketamine infusions the people u know that it helped are they still in remission or was it only brief ???? Thankyou so much for all your help Kylie :-)

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/3/2011 12:37 AM (GMT -6)   
Hi Kylie -

Ketamine sure is available in Australia (I'm in Melbourne - where are you?) I believe that we're actually more or less the world leaders as far as the awake/sub-anaesthetic method goes. With this method, you're awake and just have it like any other sort of drip. You can still function pretty well - just tends to make most people a bit dizzy and drunk/spaced out - but unfortunately I'm really sensitive to it as I said... my last infusion I spent the entire week vomiting even on IV anti-nausea meds and was so dizzy I couldn't get up without a nurse. The one before that, although it made me very sick also, was well worth it. I went into hospital the week before Christmas with close to 10/10 pain... so bad I was vomiting, then passing out with pain, made worse by the fact that I was vomiting up all my pain meds as well. Three days on ketamine and I was down to a 4. I got out of hospital on Christmas Eve and it was the best present I could have asked for. I had less pain, fewer spasms. I usually have to use a wheelchair because I've got quite bad dystonia - THIS is a photo of my feet and legs on a normal 'good' day - but I spent Christmas Day out of my chair.

The results from other people I know are mixed - I know of one girl who is still pain free I think after a year, another woman I know had 3 months from her first infusion, 8 months from her second, and now has some pain again but greatly reduced compared to what it was before. Another friend got out of hospital a couple of weeks ago after her (I think) sixth infusion and is completely pain free at the moment.

I have one good friend who's had problems with SCS infection, though she's now doing quite well with hers & getting good relief from it. I've not had any problems with infection - just lead migration and discomfort from the unit because I lost a LOT of weight.

It seems at though my last SCS surgery at least contributed to the spread into my back, but mine is a pretty severe and, from what I understand from reading and from my doctors, a pretty atypical case. I started showing up with heart rate and blood pressure problems - I have such bad orthostatic hypotension now that I have to be on medication so that I don't don't get dizzy faint when I get up, and I also have very bad gastroparesis (delayed stomach emptying) that at one point saw me down to 30kg in weight. My doctors all think it's directly due to the CRPS and the effects on the sympathetic nervous system because we've ruled out everything else. Most of my spread has been spontaneous though.

Not reading about it online is probably good advice - there are a lot of horror stories out there, and a lot of 'information' and advice that needs to be taken with several very large bucketfuls of salt!

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/3/2011 1:04 AM (GMT -6)   
Hi KD, and welcome to the family!
 
Like you and Laura, I also have CRPS. Mine also started as a result of a work related injury. The believe I ended up with tendonitis as a result of over working my arm moving heavy items, but after a reasonable ammount of time the pain wouldn't go away. Physical therapy only made it worse infact. So they sent me to a hand specialist, wondering if it was carpal tunnel as my right hand and wrist were in severe pain to the point where I could barely grip anything with my hand; I had to eat left handed given I'm a righty. My MRI's came back fine though, and not knowing what to do with me he sent me back to work with a wrist brace and vicoden and said "let's see what happens". It didn't help that I had a boss who hated my guts and viewed me as competition; so he proceeded to run me back into the ground and threatening me with losing my job if I didn't do my assigned tasks. (Which I was generally having to do with my brace on AND on vicoden.) I had brought my issues with him before the owners, but they weren't very sympathetic, and eventually the manager got his way and worked me so hard that I had to call in one day; the next day I was terminated.
 
So it was off to another Workman's Comp doc. They sent me to an orthopedist, who wondered why I was wasting his time as my x-rays were fine. Then they sent me off to a Workman's Comp pain doctor -- I would love to find a way to put this man out of practise! He never out right said it to my face, but insinuated that I was just abusing or selling my vicoden, and that I was faking it. My hand would be discolored and swollen and he'd either say "I don't see anything" or he'd say "well you obviously were doing something to your hand before I walked in to make it that way". In the end after a full arm MRI he told me "I can't find anything wrong with you, there for your fine." and my case was closed.
But the pain wouldn't go away. Infact it was spreading to include my elbow now, as well as my wrist and hand.
 
More specialists and still no answers. All I wanted was for someone to tell me what was wrong, and fix me! I just wanted to return to my life, pain free. Two years after the accident I was sent to a fantastic Pain Management Specialist, and he had an idea what it was but wanted to do a Stallate Ganglion Nerve Block. It didn't do anything for me. That was all he needed to know; I was pronounced with CRPS stage 2 - meaning Non-Repsonsive. He wanted to try another nerve block, to another cluster, but the same results as the first one happened; nothing. I was told that pretty much the only way to treat CRPS when it gets to this point is to manage the pain as best as possible with drugs and an SCS unit.
 
It's now been 3 and a half years since my accident that turned my world upside down and changed my life forever. When I was told I had CRPS I was told the life I knew was gone. It wasn't a lie. I have had to give up so many things, and re-learn how to live my life, how to stop being proud and stubborn and accept the fact that I WILL and DO need help with day to day things that most people take for granted.
I've been on Vicoden, Loritab, and now a days I'm on Percoset. I'm in the process of trying to get my SCS implant done, having under gone a successful 10 day trial period back in February, but I hit a snag; not alot of surgeons where I live want to do them anymore due to some inherent high risks. A few procedures gone wrong and not many people want to touch the procedure with a ten foot pole anymore. But there are always risks when you look at doing surgery, especially so close to the spine, and inserting foreign objects into the body.
 
From what I have been told and learned about CRPS over the years it's a progressive "disease". There is currently no cure, and unless you fight against it you run some serious risks. I did alot of web hunting for as much info about it as I could. You can also look up RSD, which is what CRPS used to be refered as. You're right in your description of it; it is an evil "disease".
 
I have a feeling I know why your neuro-surgeon said not to do the implant; you have the same problem I do, and that because it's your arm that is affected they need to implant the leads high up along your spinal colum -- all the way up into your cervical area. When I did my test my leads were up by C2. Because the normal leads tend to migrate easily, especially in the neck area, they recommend using the paddle leads. They're a bit bigger lead, but they offer better coverage, and because the "suture" them into place, there is less chance of migration. This is where I run into my current hurdle as because of the size of the paddles I just had a cervial MRI done a few days ago; they need to make sure there is no narrowing of the space or bulging discs they're unaware of, before they can even tell me they can do my surgery. The process requires a lamenectomy (the spine/brain specialist who will be doing mine does not do a full one, though he does remove some of the lame' to make getting the leads into proper position possible, and then sutures the leads to the ligaments next to the spine) and in such a small space in a sensitive area you can imagine the risks that come with it. Paralysis is one of them. A very sobering thought. My PM doctor has gone out of his way though to find me the best qualified surgeon to do the procedure, and I made sure to speak with the surgeon about how many a year he does, his success rate, what's the worst that's ever happened to his patients... everything I needed to ask to put my nerves at ease before saying "okay, let's do this!". So long as my MRI comes back normal, I'll be good to set a surgery date. :-)
 
My pain started in my hand and wrist, now it's my entire right arm and into my neck, as well as taking over the front of my clavical area. CRPS is progressive, and I've yet to hear about anyone having it's progression halted. I have heard of some going into remission, but most of those folks were all at Stage 1; if you catch CRPS early enough you can actually reverse it or at least put it into remission by having successful nerve blocks done. However alot of times CRPS isn't diagnosed until it's past this point. There was a time when I wish they'd figured out what was wrong with me in those months after my accident; maybe then I wouldn't be where I'm at now. Now just getting through the day is a challenge, and lately my pain has been so high I feel more like I'm exsisting ... to sore to want to do anything, or I end up pushing myself to far and end up crashing out from a combination of narcotics and more pain then my body can handle. I took pain management classes long ago, especially when I was in martial arts, so I try to block as much of my pain as possible, but I can only block so much, and on average my pain is about an 8 from the moment I get out of bed. Infact as of late sleeping has become a real challenge as trying to get my arm comfortable feels like Mission Impossible.
 
I know over here in the states they don't always recommend the ketamine treatment, as they're still doing it as a ketamine induced coma to try and "reset" the nerves, but of course the risks with that are obvious. I know Laura said she did an "awake" version, but then Australia seems to be ahead of the curve when it comes to treating CRPS. I know they used to recommend buring out the affected nerves, but I don't know of any doctor's that still practise that option; that's just to risky in my book to not have /any/ sensation... I mean we have nerves for a reason.
 
I have a neighbor with an SCS unit and it's really changed her life and restored alot of it back to her; but she doesn't have CRPS. I know from my own experience that the 10 days I had mine were annoying and a blessing! They implanted my wires about mid-back, and used the normal ones, so there was alot of motion on their behalf; this resulted in sudden "jolts" where the sensation was 100 times stronger then it should have been. It was explained to me as "think of dangling two pieces of string down a piece of pipe." which is why the paddle leads are far better. I was told this "jolting" would be pretty much eleminated with the permanent unit. The tape and padding across my back was a pain; it was itchy, bulky, the tape kept trying to peel, I couldn't shower... all mild annoyances that were only temporary. Obviously I won't have those issues with the permanent one. But oh I tell you, the day he pulled my temp unit off/out I was so sad. For 10 days I had a taste of what my life could be like. Now that I have the best surgeon I could hope for for the procedure I can only hope I can still have it done. Otherwise I can examine extended release pain meds, with some strong stuff for break through for when I have flare ups; which is pretty much all the time now with the weather turning. Unlike Laura I don't have the extreme sensitivity, unless I'm swollen, and in the summer heat of the high desert that's already starting to happen as we had a heat spike the last few days and it's to the point where I can't open anything that requires twisting, and I have to have my mother cut my food, as my hand won't hold the knife and cut through anything mildly resistant like a sausage. cry
 
I hope at least for now they've got you on some good pain management medication, and some of us with CRPS/RSD have tried to talk about ways we modify daily behavior to deal with things, as well as tips and tricks to help things. I know I take a daily hair/skin/nail suppliment, and while it's never been conclusively proven to help, I know for a fact I've never had any of the hair/skin issues generally associated with CRPS. I still get ocassional discoloration ... usually red, but it's heat related, and that's always hand in hand with the swelling to the point where all the lines in my fingers are missing I get so swollen. I use alot of biofreeze as well to help combat the heat and the swelling, and even some of he pain; Icy Hot makes a wirst/forearm sleeve that works okay, especially once the medicine wears off and I saturate it with biofreeze.
Like Laura said, if you have any questions don't hesitate to ask. My email link works, so if you ever need to talk -- I know emotional stress, and just stress in general, only aggrivates our condition.
 
I also know for a disease that's so "rare" there seem to be alot of us, but at least we've all banded together and we have places like here, where we can talk and comfort one another, and fight this together; Sisters in Pain.

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

kdmack
New Member


Date Joined Mar 2011
Total Posts : 9
   Posted 4/3/2011 7:04 AM (GMT -6)   
Thankyou Laura and Rhaevin thankyou both for all your information and help, I'm in New South Wales and thankyou 4 the info on ketamine being available here the one I had read about on the net a few years ago was the type where u are induced into a coma and then given the infusion of the ketamine, but now i know they do the awake one here I will be following that up with my pain specialist (he hasn’t even mentioned it to me) I have had a nerve block done but that failed. I originally hurt my shoulder at work and the pain originally started in the shoulder as I stand today though the pain affects my shoulder , and into the back of my shoulder my left breast, across my clavicle, my neck my entire left arm, wrist and hand. And yes Laura that its why my GP advised me not to look up and read about CRPS on the internet. Currently I am still working fulltime but I am finding this extremely difficult and ive been having ALOT of time off last week 2 days off (but wanted at least 4 days off) and I'm not going to work tomorrow due to pain ++++++ Worries me about what the future will hold where my career is concerned. Thankyou so much for sharing your experiences and for your advice its the first time anyones been honest with me (except one neurologist I saw about a year ago he did nerve conduction studies on me and told me the results were really bad and that I would never work again) but I didn't listen to him and just pushed myself to continue on working.

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 4/3/2011 8:32 AM (GMT -6)   
Good morning Kdmack!

Welcome to the CP forum! wink


I read your introduction and I have a suggestion about the SCS. Many of the members here will suggest that you get a second and maybe a third opinion from a Neurosurgeon, and I support that as well.

The issue of tinnitus is a rather common amongst pain suffers who are being treated with pain med's on a long term basis. I too, suffer from this, and it started after the pain med's were scripted on a regular basis.

Mine is a high pitched pulsating whine, and is there 24/7. (rather loud too!) If you think about and focus on it,....it can drive a person nuts! shocked This is one reason I bought a white noise machine for my bed time.

There is no cure for it, but you may find that once your off the pain med's it may go away or you may see a reduction.


Again "Welcome" and make sure you check out the Chronic pain 101 post at the top of the CP forum page. There is a lot of good information there. Also we suggest that new members please take the time to read the forum ruls as well. It can save a person from an embarrassing corrected and edited post from one of our "Moderators" They are usually around here, and I'm sure they will welcome you soon.

Enjoy you're time with us!

SE :)

Post Edited (Screaming Eagle) : 4/3/2011 8:53:33 AM (GMT-6)


kdmack
New Member


Date Joined Mar 2011
Total Posts : 9
   Posted 4/3/2011 8:44 AM (GMT -6)   
Laura or Rhaevin have either of you tried acupuncture or neuromuscular massage for CRPS was wondering if that might help actually I'm fed up and would personally try anything ???? I know u guys know where I'm coming from another aspect of my life this evil thing destroys is sleep !!!!!! I don't think either of these would help me as it seems that if anybody touches my arm even with physiotherapy it exacerbates it +++++ (even when the neurologist did the nerve conduction tests and he put a few small needles in my arm here and there I was off work after that 4 a month)

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/3/2011 9:45 AM (GMT -6)   
I have not tried either to date, KD, I think partially because while I know that accupuncture does work (I watched it successfully reverse 90% of the paralysis my ferret suffered due to a vacination reaction) I am not that fond of having people stick needles in me. I do sympathize with the whole sensitivity thing; the heat does that to me. When I say heat I'm not talking extreme. We had a "heat wave" a few days ago, where we went from low 70s to 88 and 90 two days in a row. It was horrible! My fingers hurt so bad I couldn't type without wanting to cry, and my arm was so swollen and tender ... my son brushed my arm and I had to bite back a scream. It doesn't have to be super hot out to bring me such intense discomfort. My exhusband hated that aspect of my issue. It would get so hot even at night that he couldn't hold me, and the one time he basically said "to hell with it" and threw his arm over my arm and side I nearly lept out of bed to get away from him, shrieking "don't touch me!!!" It hurt that he hadn't taken me seriously, and it hurt more when he yelled at me about how he can't hold his own wife. I remember I started to cry I was so hurt and angery, "You can't imagine I like this either! Do you think I like the fact that you can't tough me? Don't you realize that I want to be comforted and held, and the fact that you can't kills me inside?!" but it didnt' matter to him, all he knew was he couldn't hold me (I can't sleep on my right side because of my arm) and he even told me my pain got in the way of his happiness.
 
If you do try one or both and they work I would hope you'd share. At night now I have a satin pillow case over a feather pillow and use that for my arm, or I use a fluffy pillow (also in a satin pillow case) and I use it like a body pillow; keeping it against my chest so I can drape my arm over it. The fabric is cool and soft, and it keeps my arm elevated and cushioned. Also when I am really restless I take Valerian Root to help knock me out. On an average night though I only get about 6 hours, at best.
 
Are you left handed or right handed; I am curious if your issue is in your dominant arm like mine is.
 
Hearing Laura talk about all the improved treatment for CRPS in Australia makes me with I lived there -- until the states catch up with you guys the Ketamine won't be an option for me.
 
Hope you both have a low pain day, and a peaceful nights sleep.
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

kdmack
New Member


Date Joined Mar 2011
Total Posts : 9
   Posted 4/3/2011 1:20 PM (GMT -6)   
Hi Rhaevin, thanks again for your response the one very LUCKY thing about my CRPS is that it is in my left arm and i am right arm dominant in saying that about 3 weeks ago I got really bad pain in my good shoulder and arm (right) couldnt even lift my arm to put my hair up or hold a cup (scared me ++++) thought CRPS was spreading to my right arm I had a script at home for an anti-inflammatory so I put myself on this couldnt use my arm for 4 days however is completely better now. I feel for you as I know how much this affects me and its in my non-dominant arm. This evil thing does affect all aspects of your life, relationships, career and home life my husband gets cranky with me as I can't keep the house clean like I used to the folding is up to my ears but I don't think he understands the pain I guess when u physically can't see it, its hard for people who are not experiencing it to know how bad the pain really is. My last appointment with my pain specialist was probably one year ago and the outcome was that he couldn't help me anymore unless I decided to have a SCS implanted my GP has now taken over trying to manage my pain (think she is at her wits end too) but today after all the excellent information from you guys I am going to ring my pain specialist for an appointment so I can discuss with him the ketamine infusions. Thankyou so much for all your help and suggestions.

kdmack
New Member


Date Joined Mar 2011
Total Posts : 9
   Posted 4/3/2011 1:26 PM (GMT -6)   
Hi Screaming Eagle,
Thankyou also for your response and welcome, I wasn't sure whether that tinnitus was from CRPS as it is on the affected side also or from medications so thankyou for letting me know the cause of that I have mentioned it to my GP ages ago and was going to talk to her about it again at my next appointment.
I definitely will go and look at the two sections you have suggested thanks again kdmack..

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 4/3/2011 1:38 PM (GMT -6)   
kdmack, I don't want to mislead you, as tinnitus may be caused by several different things. Pain med's is just one of them. Exposure to loud noise over a very long period of time will also cause this as well.

I do find that many a CP patient on pain management for a extended period of time may suffer from it as well.

Take care,

SE wink
"The clock is running. Make the most of today. Time waits for no man. Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why it is called the present."

kdmack
New Member


Date Joined Mar 2011
Total Posts : 9
   Posted 4/3/2011 2:19 PM (GMT -6)   
Hi SE, no don't think that you are misleading me I just found it interesting that it may be caused by medications ( that thought had crossed my mind that it may be medication related) I will bring it up with my GP again anyway thanks for your help kdmack

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/3/2011 5:47 PM (GMT -6)   
Hi Kylie,

I wouldn't touch acupuncture, but I have a vet friend who does both needle and laser acupuncture. She's done laser AP on my feet a few times and although it doesn't make any difference to my pain it definitely seems to improve the temperature and circulatory patterns. I do have massage - my physio is a neuro-physio and we've found now that the only thing that really helps me is gentle massage. It's helped to bring my sensitivity under control and because I get a lot of muscle spasms it helps to deal with the pain from them as well.

As yours is 'just' one sided, it might also be worth looking up Lorimer Moseley/NOIGroup and their Graded Motor Imagery, particularly the Mirror Therapy section: http://www.gradedmotorimagery.com/index.htm

Also - you said that you were in NSW - are you anywhere near Sydney? I can't speak from personal experience of course, but Royal North Shore Hospital have a good reputation for dealing with CRPS.

Laura

kdmack
New Member


Date Joined Mar 2011
Total Posts : 9
   Posted 4/3/2011 6:43 PM (GMT -6)   
Hi Laura, Yes I have heard of the mirror therapy one of my dr's and physio's have mentioned it I don't really know alot about it I did ask my pain specialist and he didn't think it would help as his opinion is that my CRPS is too advanced and that if it had been picked up earlier then that would of most certainly been an option but hey I'm going to look up that website cause basically I'll try anything to get rid of this can't hurt to try hey. I have seen a neurosurgeon in sydney and he said that there is really nothing he can do to help me he's also the one that advised against the SCS as hes opinion is ive already had alot of interventions to try and improve this problem and he feels i may be asking for more trouble. In saying that I agree with him when the pain is controlled well but when the pain is really bad I dont agree with him and will try anything thanks kylie

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/4/2011 8:41 AM (GMT -6)   
Kylie, you said your husband was having problems understanding the pain you're in. Believe me, I totally sympathize; I have started to dread laundry day. Cleaning I try to do a little at a time, like dusting one or two rooms a day, and then just picking a seperate day to vacuum. I try to use my left hand as much as possible to keep the strain down.
 
I am blessed to have a boyfriend that comes from a family who is no stranger to pain; his own brother has already had to have a heart transplant at what most consider a "young" age -- mid to late 20's. And his father suffers chronic neck pain too. I have done alot to try and educate him about what my life holds for me, and what it's like now. He was kind enough to drive me to my doctor's appointment when it was time to have my trial stimulator implanted, and then spent the first 4 days taking care of me while my family took care of my son.
 
It's hard though to try and effectively communicate to others about our pain without coming across like we're whining about it. If you're interested please share the following link with him; maybe an outside perspective will help him realize what you're dealing with; and yes, the picture is me.
 
 
I sincerely hope it helps, as I have known the heartache of a husband that did not understand, and even the comment once from my boyfriend of "you're blowing it out of proportion" reduced me ot angery tears. If there's anything I can do to help him understand what you live with, please let me know. *gentle hugs*

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/4/2011 12:13 PM (GMT -6)   
Well done you for offering up your article, and for being able to do it in the first place. I know how hard it was for me to 'expose' myself, so as you've been brave enough to to that, I'll put my own forward as well - http://www.abc.net.au/catalyst/stories/2621515.htm

*gentle hugs* from me also
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.

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/4/2011 12:58 PM (GMT -6)   
Oh Laura.... *hugs*  I wish you'd warned me I'd need a box of kleenex. I know your story, but something about hearing it from your own lips..... Thank you for being brave and sharing.
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, June 18, 2018 7:56 AM (GMT -6)
There are a total of 2,972,742 posts in 326,009 threads.
View Active Threads


Who's Online
This forum has 160851 registered members. Please welcome our newest member, Linda T.
399 Guest(s), 9 Registered Member(s) are currently online.  Details
81GyGuy, Kent M., countess18, Bebopgeo, Girlie, Garion, Noah2112, phillyroll05, CAdogsRus