Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


advertisement
Reply
 
Thread Tools Display Modes
Old 03-29-2015, 11:24 PM #1
carolinarose79 carolinarose79 is offline
Junior Member
 
Join Date: Mar 2015
Posts: 27
8 yr Member
carolinarose79 carolinarose79 is offline
Junior Member
 
Join Date: Mar 2015
Posts: 27
8 yr Member
Default A little advice, a few rants

So the pain clinic prescribed a topical compound of Gabadaptin (?) And diclofenac well of course it isn't covered by my insurance and they send the script to an out of state pharmacy so I had no clue what I was even getting until it got here. I was on diclofenac orally about 2 years ago and it really upset my stomach, granted I know this is being absorbed through my skin but I wasn't given a chance to inform them of this since they never told what they ordered. Also my new pain meds they wrote to be filled on Saturday, I understand why since they want my other script to have finished out when I start the new one. Problem is my insurance also wants prior approval before they will agree to pay. That takes a month. So I had to foot the whole bill for my pain meds or suffer since there is no 24 hr or emergency contact for my pain clinic. PS. The new meds don't work half as good as the old meds did. Ok rant over.

Now for those who use mobility devices, what do you use and how often? Since I am unable to get actual directions from my physician on what I should be doing I am having to put together my own way of living so to say, as I work on getting some therapy. I have a fracture (untreated) to the left heel, and RSD throughout the lower right leg ankle and foot. Right now I have a walking boot for protection of the right side when I am out, and a cane that i generally have to use due to the pain in both feet. But it's not enough and a wheelchair or motorized chair will not fit where i currently live.
Thanks bunches for any input hope all are have up days.
carolinarose79 is offline   Reply With QuoteReply With Quote

advertisement
Old 03-30-2015, 08:38 AM #2
Littlepaw's Avatar
Littlepaw Littlepaw is offline
Senior Member
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Littlepaw Littlepaw is offline
Senior Member
Littlepaw's Avatar
 
Join Date: Nov 2014
Posts: 1,537
8 yr Member
Default

Ugh, so frustrating. I have found such differences in product with compounds that I try to use someone local so if the base needs adjusting I can just take it in. I ran into a problem with one doctor whose process was to fax the script where they wanted instead of giving it to you, so I just called the pharmacy and had them transfer it.

Careful with that foot, calcaneal fractures take a long time to heal. I used a GoGo Elite Traveler Scooter around the house for a long time. After removing the arms it was actually more narrow than my walker and would go through a tight bathroom door when the walker couldn't. I rented it for a couple of months before buying. For general use or taking out somewhere, I liked my rolling walker.

Hang in there and best to you on the PT. It DOES make a difference. I am sans all mobility devices now.

Sending Healing Love,
Littlepaw

Last edited by Littlepaw; 03-30-2015 at 08:41 AM. Reason: Spelling
Littlepaw is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
carolinarose79 (03-30-2015), Enna70 (03-30-2015)
Old 03-30-2015, 08:39 AM #3
Russell's Avatar
Russell Russell is offline
Member
 
Join Date: Feb 2011
Location: Blue Ridge Mnts of NC, USA
Posts: 680
10 yr Member
Russell Russell is offline
Member
Russell's Avatar
 
Join Date: Feb 2011
Location: Blue Ridge Mnts of NC, USA
Posts: 680
10 yr Member
Default

Hi Carolina,
You mentioned a mobility issue. Why won't a wheelchair fit where you're at?
I have no problems getting around the house in mine. I have one wheelchair on the main floor, one for the lower level and a motorized for outside. But you also mentioned this monster effecting your feet. That is one of the reasons I'm in wheelchairs. My shrinking cerebellum is the other reason. I took off the stirrups and peddle myself with my feet so that might be an issue for you. Getting around my house doesn't cause too much pain. I breakdown the motorized one to fit in the back of my Forester and also bring a travel chair for short distances like going just to a restaurant. My wife pushes me when I use the travel chair. "If the world doesn't fit you make adjustments".
I hope you find relief somehow...
__________________
Hope for better days.....
Russ
okska'sssini ómahkapi'si
.
Russell is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
carolinarose79 (03-30-2015), Enna70 (03-30-2015), Littlepaw (03-30-2015)
Old 03-30-2015, 08:51 AM #4
carolinarose79 carolinarose79 is offline
Junior Member
 
Join Date: Mar 2015
Posts: 27
8 yr Member
carolinarose79 carolinarose79 is offline
Junior Member
 
Join Date: Mar 2015
Posts: 27
8 yr Member
Default

Quote:
Originally Posted by Russell View Post
Hi Carolina,
You mentioned a mobility issue. Why won't a wheelchair fit where you're at?
I have no problems getting around the house in mine. I have one wheelchair on the main floor, one for the lower level and a motorized for outside. But you also mentioned this monster effecting your feet. That is one of the reasons I'm in wheelchairs. My shrinking cerebellum is the other reason. I took off the stirrups and peddle myself with my feet so that might be an issue for you. Getting around my house doesn't cause too much pain. I breakdown the motorized one to fit in the back of my Forester and also bring a travel chair for short distances like going just to a restaurant. My wife pushes me when I use the travel chair. "If the world doesn't fit you make adjustments".
I hope you find relief somehow...
Russell,
Hi unfortunately I share my home with not only my spouse and my 20 month old but also my mother and step father at the moment. They are the ones that won't make allowances for a larger mobility device such as a wheelchair. I am currently looking for a rental since the state has taken my home for road chages. I have been looking into mid-arm crutches for the time being since the wheelchair is not possible. Thanks for the advice.
carolinarose79 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Russell (03-30-2015)
Old 04-01-2015, 02:09 PM #5
catra121's Avatar
catra121 catra121 is offline
Senior Member
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
catra121 catra121 is offline
Senior Member
catra121's Avatar
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
Default

I use a rollator (4 wheeled walker) and it's been GREAT! I have the Nova Zoom 18 (they come in different heights up to 24 but I use the 18 because I am only 5 ft tall). This allows me to keep a great deal of weight off my leg (left one has RSD), has a seat for me to sit on when I need a rest, a bag under the seat allowing me to carry things, and is great at keeping people from bumping into me. It folds up very compactly and is easy for me to lift in and out of my car. Because the bag is fabric, it does not need to be removed before folding (though anything in it does need to come out).

The rollator is VERY easy to push and has great breaks that you can even lock if you need it to stay in one spot for a while. I have also been know to sit and "scoot" while in the chair when I just couldn't walk any more. I also kneel on the seat quite frequently when I just need to take all the weight off of my feet or need to use both hands (like washing the dishes).

I ordered mine off amazon and like my particular model because of the height and also for the larger wheels that work better on uneven surfaces. It cost me about $120 on amazon. You can get one at the local pharmacy too...they may not be as good but are about half that price. There are also other models on amazon that are half the price. I know some places that rent scooters also rent rollators if you wanted to try one out before buying and don't know anyone who has one.

My rollator has really been a life saver in terms of allowing me to continue to live my life with just some minor adjustments to HOW I do things.
catra121 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Enna70 (04-01-2015)
Old 04-01-2015, 02:34 PM #6
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
10 yr Member
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
10 yr Member
Default

I know this isn't an issue for Catra, but for anyone planning on applying for SSI/SSDI, you really should get a prescription for a wheelchair or walker, so that you have the documentation.
LIT LOVE is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Always_Believe (04-02-2015), catra121 (04-01-2015), Enna70 (04-01-2015)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
New and need any advice I can get dawn8168 Spinal Disorders & Back Pain 10 04-26-2008 10:42 AM


All times are GMT -5. The time now is 12:39 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.