CRPS and My Virtual World

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6 years 9 months ago #19041 by Rosie
Replied by Rosie on topic CRPS and My Virtual World
Hey Josie,
Thanks for your reply. It helps just talking about things and getting it out in the open.
My current pain specialist thought it could be beneficial for me to see a pain team, so I'll see how I go.

Still haven't quite got the nack of pacing yet. I was doing some housework last week and hurt my back. My GP says I had inflamed the fascia joints in my back. It was a very painful lesson to learn about pacing myself, but I guess I won't forget it any time soon!!

I do have days when I'm feeling a bit down, but I do try to keep myself positive, giving myself things to look forward to. One of those things now would have to be sharing my story, and hearing from others on this site. I'm still adapting to working out new ways of doing things...I was right handed and I'm now left handed...just not always successful but I'm getting there...

Great to hear from you..hope you're doing ok..chat again soon..
Rosie.

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6 years 8 months ago #19544 by Kim
Replied by Kim on topic CRPS and My Virtual World
hey guys i haven't been on for a while,due to being very ill and so on ,alot of the people here know me ,but i suffer from crps 2 due to a crush injury to my right foot in 2010 and i struggle day to day still even with a stim, took nearly 4 months to work out was wrong then we had floods and more floods only to find out that my crps had moved to my left leg so then i went ahead with the stim and yes it does help and i wouldn't be with out it either but more info about it would have been nice,my mental health has not gotten any better the tablets im on are to many to count
so i feel you'r pain,stress also plays a part,not sleeping,i hardly eat,i dont go out and if i do its to doctors appoints that my wife has to drag me to.
The company that makes them far as im concerned have alot to answer for example they didn't tell me how much the pain would increase after a trail was done, the replacement of the whole lot in 5 to 9 years
then i find out this week its going to cost every 2 years 13 thousand dollars just for the check up. then the big costing of replacing the battery and running gear of it and if the leads are broken there's more.

anyway i hope you guys are doing well.


kim

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6 years 8 months ago #19549 by Josie
Replied by Josie on topic CRPS and My Virtual World
Hi Kim
I m not always on the forum either.

We could be twins- I have CRPS type 2 in my foot, hardly every go out except to doctors or dentist appointments when I have to, my husband is my carer, i cant walk and use crutches, a knee walker, a small portbale scooter to get into the doctors rooms. I have had a stimulator for 8 months now and it does not stop the bad pain but it sure reduces the quantity of pain and helps tame it some of the time. Just being vertical for a few minutes can set off pain, the car vibration wil do it most times, I sleep surrounded by 4 cushions to keep the sheets etc weight off the foot, that is when I can sleep,I am lucky to get 5 hours, that would be a good night, the burning and shooting pain is worse at night. Im sure you will relate to all this.

How come you will be up for all this money in the future to replace it? Is this because you don't have health insurance?

It is hard to keep your head together when you are sleep deprived.

Josie - user name Josie

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6 years 6 months ago #20082 by Liv123
Replied by Liv123 on topic CRPS and My Virtual World
Hi All, my name is Liv& I'm new to the forum, though sadly not new to crps. I was diagnosed with crps type 2 in 2010 after a pretty horrific skiing accident where I fractured my L tibial plateau and ruined my ACL. I'm a RN and realised within 6 wks post fixation of my # that something was not right with my recovery&rehab. Long long story short- I was lucky to get diagnosed early and was placed in the care of a wonderful pain specialist who may be the best in the sthrn hemisphere. Despite very aggressive treatment ( all the drugs, lumbarsympathectomies x 6, neural feedback physio, regular physio, 9 day ketamine infusions x 3, trail spinal stimulator& permanent nerve stim) my crps has been very difficult to manage. I've done everything asked of me& it's been a hard journey. Since diagnosis I've worked as a RN, recovered from the initial injury, fallen pregnant, had my third child, tried to continue being a good mother to my two other beautiful children, maintain the best possible relationship, against all odds with my wonderful hubby (who is amazing) & tried to stay on the right side of sanity while on this wild emotional roller-coaster ride called crps. I've learnt so much- much of the same as other posters on this forum. Pacing is indeed important, though with 3 young children I am no expert. The intensity of my pain is directly& predictably related to my emotional well being. It is also affected by my diet& I am in the process of reducing & eliminating certain foods that flare my pain . This has been a welcome breakthrough for me as painkillers offer small relief at best& at times actually make my pain worse (bit of a gamble to know when to take them). I have my spinal nerve stim& while it worked terrifically to begin with- it's effectiveness has tapered off and i wonder if it's helping at all. To be fair the stim is only. 6mths old and more programming needs to be done yet......., fingers crossed!
I've lost friends, some don't believe me, some family relations are strained- but some of my friends have stuck like glue, some of my family are great& I've made some fabulous new friends. My husband stands by me through mild pain, severe pain & celebrates the occasional no pain moments:) my kids are amazing and have accepted all the changes like only children can. They love me no matter what and they keep me busy and distracted. I don't sleep well anymore, I've developed post traumatic stress disorder post some of the medication regimes(now resolved thankfully) & I definitely have a compromised immune system now- I used to be super healthy- I now succumb to illness so easily:( . I see a psychologist, a GP, my specialist, my programmer and on occasion a naturopath. I take supplements, conventional drugs, take my health& diet very seriously and exercise the best I can despite the pain. I have and will do whatever it takes to be rid of this crps, however have come to realise that I cannot expect to be rid of it, though I can hope for the best. It's a long and hard road......& nothing happens quickly. Well that's my story, I'd like the chance to help/support someone else who is struggling with all the crps throws at you, so don't hesitate to contact/ ask me, Liv.
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6 years 6 months ago #20084 by Josie
Replied by Josie on topic CRPS and My Virtual World
Hi Liv and welcome to this website and topic which I started.
wow you have been through all the treatment options and you have a very proactive attitude. Your life is very full and this would make it harder to pace your activities in order to help manage your pain levels. CRPS rarely goes away so we have to find a way of accepting that this is how our life is now but it doesn't mean we stop hoping for some better relief or reduction in the symptoms.
My Stim worked better the first two months too, i think I just kept doing more and more not realizing that I would eventually cross my pain threshold tolerance levels and the pain would flare badly which is what it did. I have had several fine tuning sessions with my programmer and each one has been very worthwhile., I have a large spinal canal so stimulation relates very much to what position my spine is in and whether my back is arched enough.
You are fortunate to have an excellent pain management specialist, I went 4 years before finding the good ones and wow the clinic I now attend is brilliant, almost too good to be true!
I am responding well to Ketamine infusions, 9 days is a long one, what dose was this? my dose is 250 something-milligrams would that be? not sure I just know it was reading 250.
Anyway I hope we hear more from you in the future.
Take care
Josie
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6 years 6 months ago #20085 by grappers
Replied by grappers on topic CRPS and My Virtual World
Hi Liv123 and welcome,
I would like to know how much contact you have had with your stim technician since the implant, I only ask because my Tech gave me her mobile number to contact her if I had any problems, or if the stim was no longer giving the coverage I required, since having the implant done, with in the first couple of weeks I needed the stim adjusted as swelling had gone down and the amplitude of the stimulation was not as intense, so she called me in the next day and reprogrammed the stim, she also added one more program.
In the first six months I reckon I would have seen her 6 times for fine tuning and programs added, I also have six month checkups at the pain clinic to make sure all is going well, the tech is also there and they add and change programs so your body does not become sensitised to one type of stimulation. My point is you are the best judge of how the stim coverage is helping, if you are not happy with the coverage make a phone call to your tech and ask for some fine tuning, it is not an implant that once installed and set stays that way for the life of the implant, it will need constant fine tuning and adjusting, the same as they would for any medication, thats why I have six monthly set appointments, and any other I require in between, don't feel as though you are being a burden on them by asking, they know it has to be changed all the time so you don't get used to it, As I have said in previous posts about the stim, I know have multiple programs, one is a constant pulse of just one program, I have others which combine 2 or three programs into one, ones that turn on for 15 seconds and turn off, it is my choice depending on pain which program I use, don't be afraid to ask for assistance and extra programs, it is what it is designed to do and for them to implement.
I am a strong believer you are what you eat, while not a health nut, I do not use any goods that are processed, all pastes and sauces I make myself from scratch, grow my own veggies and herbs, I find my IBS plays up more when processed foods come into my diet, which you can't help when you go out for a meal.
As for picking up every bug that comes out, most CPer's will have that very problem, the drugs we take lower the immune system, most CPer's have vitamin D deficencies, some have hormone imbalances, both of these I have as well as skin sensitivity to chemical products, which includes regular soap, all these have only surfaced after years of disastrous drug trials as well as intolerance to most drugs.

Don
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