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 09-14-2006, 04:26 PM #1
allentgamer's Avatar
allentgamer allentgamer is offline
Senior Member
 
Join Date: Sep 2006
Location: Toon Town USA
Posts: 1,023
15 yr Member
allentgamer allentgamer is offline
Senior Member
allentgamer's Avatar
 
Join Date: Sep 2006
Location: Toon Town USA
Posts: 1,023
My Mood: Spread
15 yr Member
Unhappy Spread

Well it has finally been confirmed, the RSD is moving, and has made it from my ankle to my shoulder. It seems to really go after my joints making it very difficult to move around, and use my right arm and leg.

The joints that are effected, and hurt the most, in the order of pain are: Hip, ankle, shoulder, and knee. It hasnt made it down the right arm yet, and I am not looking forward to it either

My skin get sensitive also, but it doesnt stay hurting, and the burning sensations move around. So one day my calf will be burning and drivin me nuts, and the next day it will be my thigh, and that might last a couple days, but the next day or two it will be my foot, either the bottom, or the top. Very unpredictable stuff I must admit.

I really got the doctors attention a couple of weeks ago, the look on her face was priceless! I was telling her how I can press on the shin bone for a minute or so, and it leaves a dent the size of my finger print for a day or two. Then I proceeded to show her by pressing right on the bone for a couple minutes. She freaked out! lol

She started me in PT and took blood, urine, and told me she was very worried about that. I was thinking it was about time she was helping me really worry . I find out all the test results on the 18th, and the PT guys are going to report that 3 weeks of PT have not improved anything. In fact they have really made it worse by not knowing what they were doing. They have had me laid up in bed for a couple of days at a time after their so called treatments. They promised it wouldnt hurt coulda fooled me, but im sure that is some pain im feelin lol.

Well it sure is good to find this place, my starwars buddies will be wondering where ive gone to lol.
Cya soon
Allen
allentgamer is offline   Reply With QuoteReply With Quote

advertisement
Old 09-19-2006, 10:48 AM #2
allentgamer's Avatar
allentgamer allentgamer is offline
Senior Member
 
Join Date: Sep 2006
Location: Toon Town USA
Posts: 1,023
15 yr Member
allentgamer allentgamer is offline
Senior Member
allentgamer's Avatar
 
Join Date: Sep 2006
Location: Toon Town USA
Posts: 1,023
My Mood: Spread
15 yr Member
Default Everything is good

Hi all! Made it to the doctor Friday and everything is clear, so the problem im having with my shin denting on the rt leg is being called for now, muscle infarction, or in terms we understand dead muscles.

The pt guy didnt have the report finished he was supposed to supply, so hopefully I can find out his agenda for my leg from him. If not im gonna bug the doc soon as I know she has it lol.

I read your post Mark, and my heart goes out to you bro , Dont let the idea of not being able to work get you down. It sounds real easy but it was real difficult for me because I worked my way up to the executive lvls of casino career, it took me down low to lose that identity, and have the knowledge that there is a strong possiblity of never returning to work again,

Focus on what you can do, and on all good things going on in your life, and create some good things if there isnt much happening that is happy. But I know you will be alright because you have the basics already down pat!
Chin up bro!
allentgamer is offline   Reply With QuoteReply With Quote
Old 09-19-2006, 03:35 PM #3
buckwheat
Guest
 
Posts: n/a
buckwheat
Guest
 
Posts: n/a
Default

Just Updating

Last edited by buckwheat; 11-25-2006 at 06:08 PM.
  Reply With QuoteReply With Quote
Old 09-19-2006, 04:01 PM #4
Goodn'Plenty Goodn'Plenty is offline
Member
 
Join Date: Sep 2006
Posts: 147
15 yr Member
Goodn'Plenty Goodn'Plenty is offline
Member
 
Join Date: Sep 2006
Posts: 147
15 yr Member
Default

Allen
Have you had SGB's in your upper body?
If your RSD is new to the shoulder area having blocks right away might help diminsh it's severity to this new region or if you are lucky help knock it out all together .
That's what I did with my feet and they are not as bad as my upper body ( knock wood knock wood!!!!)
Someone on the old forums suggested I do that right away and I am glad I did .
The other thing about life is exactly the way to go.
I do not live in the past nor the future .If you do, you miss out on all the precious collection of moments that make up this thing called life.
Your circumstance may have changed but along with that so do your options - you do not have to attach a sentiment to it -it just is..better to take the U turn with your life than to always fight it ...easier on the mind body and soul.
Let me give you an example .
Some girl thinks that if she loses 10 pounds her life will be so much better so all the time she is trying to lose weight she sits at home not going anywhere thinking she doesn't look good enough.- all that time life is passing her by.
Well life is happening NOW not at some abstract time in the future(or past) when we think think things will be different or better or _____ (fill in the blank) so we got to make the most of things.
As this is the only journey we get on this earth in this vessel we can choose to enjoy it or not.That decision is ours.
And that decision comes independent of our medical circumstance.
Do what you have to do ...have a mourning ceremony whatever of how you used to live and then be thankful for what you have and explore all you can do and work with that .
People only use what 10 % of their brains - you will be surprised at what you are capable of- and this is coming from an ex professional athlete!

Sorry for the small hijack - I am preparing to start motivational speaking on coping with illness.
I get a little super excitable .
I feel very strongly about it.

Much peace
GnP
Goodn'Plenty is offline   Reply With QuoteReply With Quote
Old 09-19-2006, 05:33 PM #5
ATallOne's Avatar
ATallOne ATallOne is offline
Member
 
Join Date: Aug 2006
Posts: 202
15 yr Member
ATallOne ATallOne is offline
Member
ATallOne's Avatar
 
Join Date: Aug 2006
Posts: 202
My Mood: Spread
15 yr Member
Default Thank You Allen

May I just say Thank You for the very kind words. See - I knew that finding you all again would help me get through these trying times. I know I would find folks who have been through what I'm going through and who would be willing to share. It makes sooo much of a difference. Everyday when I wake up and open my eyes I lay there and wonder what the day will bring. Good, bad? It is almost scary at times. Guess the biggest obstacle for me to overcome has been dealing with denial! I just never in a million years would have thought that by the age of 43 I would be in the "boat" I'm in. But I feel rest assured that I need not worry about facing these daily struggles as long as I have my friends like you Allen. That also goes for The Artist, Roz , Good N Plenty and everyone else. Such a void has been in my life without the forum. I really don't need a forum as long as I can keep in touch with all of you but it sure does help. Unfortunately I cannot get onto the computer everyday because my hands get so nonfunctional, but I will try to as often as I can. In the meantime... Chin Up!!!!

Mark
ATallOne is offline   Reply With QuoteReply With Quote
Old 09-24-2006, 04:28 PM #6
allentgamer's Avatar
allentgamer allentgamer is offline
Senior Member
 
Join Date: Sep 2006
Location: Toon Town USA
Posts: 1,023
15 yr Member
allentgamer allentgamer is offline
Senior Member
allentgamer's Avatar
 
Join Date: Sep 2006
Location: Toon Town USA
Posts: 1,023
My Mood: Spread
15 yr Member
Thumbs up We make the difference

Even though I have been getting nothing but worse, I refuse to let it take the way I treat others, or how I decide to live today. You know Mark you nailed it right on the head, we get in denial. At first I was in denial that I could be happy ever again, and that I could not make a difference anymore. I was wrong.

Once I made up my mind I was having a good time despite what was going on with my body, I have had some of the best times I have ever had. I have even got closer to the ones I loved because of driving them away with a bunch whining, and crying, and complaining about pain that they couldnt do one thing about. I started complimenting, making myself spend time with people even when my body was screaming not to lol.

I still have my rough days, but they a far and few in between because they have to be pretty bad before I give in. Then I just disappear to my room.
Dont let this monster win. I think it is a good thing to come here and tell how your doing, and get those things off your chest. It is far easier when you let out those things here then on your loved ones. We understand, and actually look forward to finding out how everyone is doing, at least I do.


Well I had alot more to say, but I believe thats enough lol. Want to give (((((Roz)))))) a big hug!! Love ya so much!

Everyone take care!
Allen
allentgamer is offline   Reply With QuoteReply With Quote
Old 09-28-2006, 09:43 AM #7
emilys gramma's Avatar
emilys gramma emilys gramma is offline
Member
 
Join Date: Sep 2006
Location: michigan/ florida
Posts: 231
15 yr Member
emilys gramma emilys gramma is offline
Member
emilys gramma's Avatar
 
Join Date: Sep 2006
Location: michigan/ florida
Posts: 231
My Mood: Spread
15 yr Member
Default

hi allen, i am so sorry to hear that your rsd is on the move................

are you still involved with the 'worms'? i hope that you are able to do that...............

take care and try to stay positive..................
__________________

.
claudia
.
emilys gramma is offline   Reply With QuoteReply With Quote
Old 09-29-2006, 07:19 AM #8
miss irie miss irie is offline
Junior Member
 
Join Date: Sep 2006
Location: Burlington, ON Canada
Posts: 31
15 yr Member
miss irie miss irie is offline
Junior Member
 
Join Date: Sep 2006
Location: Burlington, ON Canada
Posts: 31
15 yr Member
Default

Allen & Mark -- I'm so sorry to hear that you are having problems.

Your posts were very timely for me. I'm off to see the pain specialist again this Monday. I haven't seen him in almost 18 months as there wasn't anything more to be done for me. Just taking my pain pills. Anyway, I ran into some real trouble with my meds a couple of weeks ago. I had shaking, felt very weak, nausea and horrible insomnia. My doc thinks I'm having addiction problems from the narcotics so I'm trying to cut down the dosages. It's a catch 22..... I needed the increased pain meds because I hurt so badly. I had a bone scan a couple of months ago and it showed inflammation in the ankles, knees, hips, low back, and right shoulder. The doc and I are sure that I have RSD spread to the right shoulder and in my right knee as well. A recent MRI shows that I have arthritis in the right knee now but the pain is much more severe than it should be. My shoulder was injured in February and just continues to ache with no improvement. I'm hoping the pain specialist will confirm if this is a spread and will have some options for me. I can barely get around and it's just been a really tough Summer for me.

I'm glad to see some members from the old forum are coming here. It's great to have a place to go again.

Cheers,
Catherine
miss irie is offline   Reply With QuoteReply With Quote
Old 09-29-2006, 10:36 AM #9
allentgamer's Avatar
allentgamer allentgamer is offline
Senior Member
 
Join Date: Sep 2006
Location: Toon Town USA
Posts: 1,023
15 yr Member
allentgamer allentgamer is offline
Senior Member
allentgamer's Avatar
 
Join Date: Sep 2006
Location: Toon Town USA
Posts: 1,023
My Mood: Spread
15 yr Member
Wink Well Helloooo!

Hi Claudia! It is great to hear from you!

We had a natural disaster this summer and all the red worms kicked the bucket The temps were just too hot here for them, but you cant keep the ole worm guy down!

We cleaned out all the bins, and got alot of castings that we cant sell, but is already making some beautiful blooms on the roses, and started another couple of bins with some new red worms. So far so good, they like their new home, and food, and are reall just now starting to double their numbers this month. So we will be out getting a couple of more bins ready.

I want to do more around the worm farm, but I am stuck at the give advise based on all my years in business and thats about it. Except for telling everyone how great earthworm castings are for their plants and gardens.

Hey Catherine! I know what ya mean about the dosages of pain meds, cant live with them, and surely cant live without them. I too kept getting used to the meds, and the docs would want to up the dose. Sometimes my body could handle it, and sometimes it would make me sick everytime I took the next dosage.

What I did was find the sweet spot! I still feel some pain because I just cant handle all those meds for pain, but I take an amount of pain meds my body can handle that also reduces the pain enough that I can deal with it. Ive alreay made up my mind that the RSD is going to impact me, im just calling when where and how much lol.

If I stayed on the higher dose sooner or later I would get used to it, but it wouldnt be long before I would need a higher dose, so I picked a comfortable medium that lets me function, but also lets me feel some pain also. It kinda works in my favor as it lets me know my limits before I go past the limit line, which I would do alot of times when I couldnt feel any pain at all. It also helps me to know when to say enough use, or work out for the day too.

I know everyone is different, and different things work for different people, but you might see what you think of this idea, if you can handle moderate pain lvls.

Good seein ya Catherine! Hope you get everything under control soon!

Big hugs to you two
Allen
allentgamer is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

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



All times are GMT -5. The time now is 09:32 PM.

Powered by vBulletin • Copyright ©2000 - 2022, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2022 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.