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)


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Old 09-08-2009, 07:10 PM #1
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Smile PM Doc appt. today, 09/08/09 for Dew (Update)

Back home from PM doc visit; upped my OpanaER to 30 mg twice per day,..nothing else changes. If this doesn't address my pain, he does not know what else he can do for me..how comforting..NOT!

I can not have a wheelchair,even though I need one..because PM doc thinks I will become dependent on it. Forget the fact that I have to use crutches because it is too painful to walk, and a cane, the rest of the time. Denial of my mobility issue will not make it go away, doc. I see PM doc again in 2 months.

WE worked a way out that I will never have to worry about my OpanaER script being late, again : )

Hope you are all well
love, Dew
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WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009.
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Old 09-09-2009, 01:33 AM #2
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Hi Dew!

I feel your frustration of your immobility and it's terrible effect on your life!
I have been going through the same struggle for a long time! It is coincidental that you write about your plight, as I just posted a new thread about a mobility scooter that was finally authorized by W.C.

Dew, please don't accept the determination by your P.M. doctor that you would become too dependent on a wheel chair or scooter!! My pain management doc had the same thoughts, but my foot doctor really new the reality of my situation....

Please explain to your pain doc that it is essential that you have some independence and the ability to get around!!! If there were an emergency and you had to go a distance, you wouldn't be able to without a wheel chair or scooter! ..and the strain and pain on your legs, and system in general when you do try to walk, is damaging!!! ....not to mention the impact on your emotional well-being and quality of life!

Dew, please continue to ask for a wheel chair or preferably a scooter.
If you are able, you might consider buying one on your own, and then later having W.C. compensate you..
I am thinking of you and know the frustration you are going through!
Hope4thebest
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Old 09-09-2009, 10:01 AM #3
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Hi Dew -

About that wheelchair, my neurologist, who graduated from medical school around the time you were born, was of the same opinion: his job was to get people out of wheelchairs, not put them in them.

What turned him around in my case was just a list of all the things I could not do without a wheelchair. And thankfully, there were no WC issues to deal with, having injured both feet at the gym.

So I would suggest taking Hopeforthebest's advice to heart. You might even want to maintain that list of all the things that come up on a daily basis that you just can't do without a wheelchair. (I presume you've been through a regimine of PT/OT, if not you should do so, WC allowing.) And to test the scooter hypothesis, you might want to rent a wheelchair for a couple of days, just see what your upper body strength is like, vis-a-vis the real world.

take care,

Mike

PS This was obviously posted before I read your subsequent thread re WC approval, which is wonderful news.

PPS And this was obviously before I realized that I had confused H4TB's thread with yours!!!

Last edited by fmichael; 09-10-2009 at 03:08 AM. Reason: typo
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Old 09-09-2009, 11:43 AM #4
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Dew,I know that your SSDI was granted on 01/2009. I don't know about Oklahoma however here in Wisconsin there are always adds on T.V. about people with medicaid or someone that does have SSDI.That the mobility store will give you a scooter for free and do all paper work for you also. On top of all of this if medicaid or medicare turns you down they (meaning the store) Will give you one for free! I have seen this all over the place. I just wanted to give you one more option to look into. I just can not believe your pm Dr. said no because you might become to dependent I do think it is a smart thing to do by what I think Hope4thebest said by writing down a list of what you do day by day! Take Care Dew! Always Breezy
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Old 09-09-2009, 12:09 PM #5
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Dew,

I am glad the script issues have been worked out!

I agree with what has been said here about the wheelchair. I'd explain that you will keep up your mobility the best you can, but that in the meantime you have to live your life somehow with the limits that have presented themselves to you. How are you going to do that? Every little thing in life requires the full use of your legs - how far are you going to get without some help? What if your family needs to go somewhere? Is everyone going to have to carry you places? What if tomorrow you broke your leg? Are they going to provide you with a wheelchair sooner than they would an RSD patient? Probably. That's part of the prejudice against RSD and against people with RSD. Somehow still, a number of doctors think it's as if we want the chair to live in permanently and that we are going to just accept sitting in it all the time rather than fight each day. Do they still think we're a bunch of wimps who won't make the effort?

Let me tell you, it's a struggle for me to get out of bed each day, being on meds, being far less mobile than I used to be. I have the tenacity and mindset of an athlete, always have had, and I still can't beat this thing. So yes, I need help. And yes, I need aids. And no I am no longer ashamed to say that. These tools exist especially to take away part of the difficulty we have with daily living. Why shouldn't we be allowed to use them like anyone else with a serious condition?!
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Old 09-09-2009, 12:33 PM #6
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Dew,
just a question,
Are you still doing your walking in the pool?

Pete
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Old 09-09-2009, 09:57 PM #7
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Hey Dew,

Screw the doc- I got my mobility scooters on craigs list! So far I have 2 (one of them stays at work) I didnt spend more then $400.00 My insurance -United health care won't pay for a scooter for me so I took matters in my own hand- I got a go-go elite scooter on craigs list - its very light and easy for hubby to put in the trunk! The battery doesnt last as long but I can get around the mall with it...definatley worth the $$

Debbie

I am looking for a third one for a new job I might have.....
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Old 09-09-2009, 11:18 PM #8
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I went to see my PM doc yesterday too! LOL *hugs* for you. Stupid docs and their silly thoughts. :-D I really hope you can find a way to get a wheelchair or scooter to give you some mobility back. We all know how it feels to not be able to get up and go like we used to. OMG....I'm ROFL because that last sentence makes it sounds like we're a bunch of 90 year old geezers who's legs no longer support us cause we're ...well just old! LOLOLOL You know what I meant anyway.

Big Hugs,

Karen
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Old 09-10-2009, 01:45 AM #9
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Quote:
Originally Posted by Dew58 View Post
Back home from PM doc visit; upped my OpanaER to 30 mg twice per day,..nothing else changes. If this doesn't address my pain, he does not know what else he can do for me..how comforting..NOT!

I can not have a wheelchair,even though I need one..because PM doc thinks I will become dependent on it. Forget the fact that I have to use crutches because it is too painful to walk, and a cane, the rest of the time. Denial of my mobility issue will not make it go away, doc. I see PM doc again in 2 months.

WE worked a way out that I will never have to worry about my OpanaER script being late, again : )

Hope you are all well
love, Dew
Hi Dew, Well you got good news and bad news- Sorry about the denial of the wheelchair. That's ridiculous- Does not show respect for you has a patient. Who wants to be dependent on one.You show respect and trust in him as your Dr.-can't it work the other way? Don't understand-it doesn't make sense.
Glad you don't have to worry about the pain meds again like before. It better work or I'm coming to Oklahoma!
I only had a couple days with low pain because of good sleep with my new sleep pill. I got flu-really think I got pneumonia. I did go to Dr. and got 10 days of high antibioc. After a couple days the green flu came back.
Have you been watching any tennis? Laura and I played about 5 days a week after school. We took lesson and they had indoor courts besides outdoor, because of the Oregon rain. One summer on our way back from a trip to Europe, we stopped in New York for the Tennis Open and stayed 12 days. My husband only stayed one day. We were just talking tonight and plan on going next fall for just a few days.
They just got back from a 4 day trip to Bellingham washington , where
my next door neighbor and then roommate now live. Their daughter and Laura are same age and went all 12 grades of school together. They went out crabbing and got 16 crabs and Lucas caught a 5 lb Salmon.They had so much fun. I couldn't go because of relapse. Back on higher pain meds.
Are you still feeling a little low since your have got back home. It seems when we go thro something as hard as that, It takes a while to recover. I know it did with me, when we flew back to Oregon when one of good friends'
son died from a car accident.
I got 4 page copy of a jouornal "Neurology Now March/April 2009
I think it's worth reading, be happy to fax it to you or mail it. I don't know if we have the equipment to scan and then e-mail. I'll ask my hubby tomorrow.
Take care and sending my love and soft hugs, loretta
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Old 09-11-2009, 03:07 PM #10
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Hi, sorry about the wheelchair. You really deserve one. Try to find a used on if you can. I'm here in OK, and it's hot and humid and rainy.(you know). I'm also on the 30 mg Opana er, and it really has started to work well, At first I didn't think it would, but now that I've been on it almost 2-3 mos. I've discovered that aside from needing an afternoon nap and all, That I've started to feel much better. For now that dose is working, plus all the other stuff.
Miss you
Take care
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