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)

Reply
 
Thread Tools Display Modes
Old 03-29-2009, 10:01 PM #21
SBOWLING SBOWLING is offline
Member
 
Join Date: Mar 2009
Location: Ohio
Posts: 310
15 yr Member
SBOWLING SBOWLING is offline
Member
 
Join Date: Mar 2009
Location: Ohio
Posts: 310
15 yr Member
Smile

Quote:
Originally Posted by screwballpookie View Post
Hey sbowling,

Thanks for the reply. It does help to have support and I feel you guys are the only support I have. My husband don't want to deal with it. All we do is fight over finances due to us having to pay for meds which costs a bundle a month. I am trying to get my attorney to respond but it seems lately he is to preoccupied with his other cases. I keep calling him and still get no response so that sure don't help with my husband and I fighting. I am trying so hard to keep up to everything and it feels that I can't do it anymore. My daughter which is 13 yrs. don't even want to spend time with me. She would rather be on the phone or computer. I can't seem to get anyone to help support me and I cry alot during the days because I feel so alone. Yes I am seeing a psychiatrist once every two weeks and they have diagnosed me with PTSD. I try to get through everything, but it is so hard. I can't get much help from my daughter or my husband. I am so worried about my legs. I have no diagnosis, but I think I know what is wrong with them. I am still trying to get my attorney to talk to me about a neurologist, but I keep getting know reply from him. I feel like I am so alone in this world and sometimes I just can't take it anymore. Sometimes I scream into a pillow during the day when i am alone. I am alone alot. My daughter goes to school at 7:40 am and gets home at 4:00pm. My husband is a truckdriver and gets home when he gets home.So I guess being alone this much doesn't help me at all. We are just so short on money that I can't really go for drives because my husband says I am wasting gas so when I do go shopping I spend sometimes 4 hours at wal-mart just looking so I can be out of the house. My husband gets mad at me for that because I don't need to be gone that long. I realize he is under stress as well with being the only one bringing the income in, but he has to realize I am trying as well. I tried to get a job when I lost my job over this injury for one and a half years and gave up because I was getting no where except putting myself further into depression. At that time I still had no idea what was wrong with me it took the docs 3 years to diagnose me with rsd and by then it was to late to even try and put it in remission. I went back to school and got an AA degree in Health Information Technology, but look at me still today. I still can't get a job so I just gave up. I didn't know what else to do. I have been trying to get disability and have been denied 4 times. I got an attorney to help me appeal it and social security said that we were 5 days late at appealing so we have to start all over. So I just got done filling out 2 packets for them and by the time I was done I was in so much pain, but I kept pushing myself because I knew it was to try and help get the stress off my husband. Now I sit and wait again. In the meantime I still have no idea what is wrong with my legs all I know is they hurt,are weak and tired. They give out from underneath me for no reason at all so that is why I am using my special crutch that was made for me after having my last knee surgery. I don't have to put any weight on my hand, but the grasping is something that really hurts. The doc said to use a cane or a walker, but I feel i will still have the same problem with grasping. I am just so scared of being in a wheelchair at such a young age. I am 36 and I don't think I am really ready to be in a wheel chair. I don't know how to deal with my legs right now let alone try to deal with a wheel chair. I have not said anything to the doc about grasping the crutch because I am afraid he will want to put me in a wheel chair. How do I deal with all this pressure? Do I say something to the doc and pray to god there is another way so I don't have to be in a wheel chair or do I just keep my mouth shut? Please help. I am so scared and confused. What do I do?

Thanks for taking the time to read about my babbling. Sometimes I just don't know when to stop. I am sorry.

Sincerely,
Tracy Tracy(screwballpookie)
Hey Tracy,

What you are going through is very normal. Your husband sees the person he loves hurting and he doesn't know what to do to help. Your daughter is 13 and that can be a tough age my daughter was 15 when I was DX she is 21 now. Explain RSD to her and try to help her understand the RSDS.org website is a good source of information. The pain is changing all aspects of your life it causes changes you may not even be aware of but your family is. The added expense of a chronic condition is expensive and it doesn't help when the economy is making more stress. So do as much listening as talking with your daughter and husband. If you are close to a Y check into water walking it really helps me. Some Y's offer scholorships for members to assist with the monthly fee. The cool water really helps with the burning in my skin and the exercise is a great stress reliever. Check to see if you can do mail in (non narcotic drugs only) depending on your insurance policy you could get 3 months of prescriptions for the price of one month. In Ohio we have several chain stores with pharmacies that offer generic drugs for 4.00 month. Some of the newer meds used for RSD don't have generics yet.
I know staying at home by yourself can get old. When the weather is nice take a walk outside or just hang out in the yard. Grow some flowers (when the weather gets nice and pain will allow) it will give you something to do and it will get you outside.
Don't keep anything to yourself if it is causing you to feel bad. Talk to your doctor that's what you have him/her for. Screaming into your pillow is like having a good cry sometimes it just feels good. When you let your emotions consume you it's time to talk to your doctor, spouce and daughter. DO NOT ALLOW YOUR HEALTH TO DEFINE WHO YOU ARE AS A PERSON. I find that daily visits in prayer with God are as much help as pills in a bottle. If you don't have a personal relationship with God now is the time to start one.
You can always come here and say as much or as little as you would like.
I hope tomorrow is a better day for you,
Sbowling
SBOWLING is offline   Reply With QuoteReply With Quote
Old 03-30-2009, 05:15 AM #22
wordgirl wordgirl is offline
Junior Member
 
Join Date: Jan 2009
Location: Chanhassen, MN
Posts: 12
15 yr Member
wordgirl wordgirl is offline
Junior Member
 
Join Date: Jan 2009
Location: Chanhassen, MN
Posts: 12
15 yr Member
Default

Not only has my RSD spread from my rt foot and ankle to my lt foot and ankle, but it's moved up my rt leg to my knee and thigh, and also up my lt leg almost up to my knee. There's no rhyhme or reason to when or if my so-called "good" left leg is sudden going to stop working. I've decided to undergo the trial of SCS, even though I have a history of things in/on/around my spine not working. I'm almost a year into this mess now, so if it's going to work -- now is the time. Best of luck to you. Word Up!
wordgirl is offline   Reply With QuoteReply With Quote
Old 03-31-2009, 03:16 PM #23
screwballpookie screwballpookie is offline
Member
 
Join Date: Jul 2007
Posts: 207
15 yr Member
screwballpookie screwballpookie is offline
Member
 
Join Date: Jul 2007
Posts: 207
15 yr Member
Default

I want to thank everyone for the responses and for all your caring. Right now I really need that. I am going through such a rough time. I woke up yesterday having a really bad day. I woke up having my left limbs in so much pain it was hard to put to much weight on my foot. I looked at my foot and noticed it starting to shine on the top and I asked my daughter if it looked any different to her and she screams mom it is shiny. My right side hurt as usual, but the left side was in so much pain I wanted to scream. I woke up this morning with my left lower leg and my left hand and arm still hurting.Not only was that happening but my palm feels like someone is just taking a torch to it and just burning the crap out of it as well as my toes. The back of my left shoulder is now hurting like crazy and sometimes it hurts to breathe in due to the pain in my shoulder. So instead of feeling a little better I am feeling worse. Are these feelings normal for rsd? Can one side of your limbs hurt so bad that you don't want to use them and the other side still hurt but not as bad? All I know is I am very scared. I did call my family doc and let them know and they are referring me to a neurologist. So I got to sit and wait. I do have a feeling it is probably rsd in my legs and it is just acting up on one side and then will eventually go to the other side. I am not sure but it is just a feeling I have. Please help me and let me know if what is happening with my legs is normal or not. I would really appreciate some responses so I know if my guessing may be accurate or not. Thank you all again for being here for me. You are all a Godsend. Thanks again.

Sincerely,
Tracy Tracy(screwballpookie)
screwballpookie is offline   Reply With QuoteReply With Quote
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
Spreading RSD - not sure what to do?? Dubious Reflex Sympathetic Dystrophy (RSD and CRPS) 16 03-13-2009 06:05 PM
RSD and spreading? sue k Reflex Sympathetic Dystrophy (RSD and CRPS) 5 09-01-2007 12:03 AM
How do I know if my RSD is spreading Bronco4586 Reflex Sympathetic Dystrophy (RSD and CRPS) 4 04-24-2007 09:44 AM
rsd spreading,,,, moonstar Reflex Sympathetic Dystrophy (RSD and CRPS) 20 01-19-2007 11:58 PM


All times are GMT -5. The time now is 10:26 PM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 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.