CRPS/RSD Both The Same Wish They Would Pick One....Tammy's Story

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From: Liz3079 Sent: 10/2/2006 10:03 AM
HI Kathy
Thanks for the information.I no longer have any insurance as my place of employment closed down for good.Workers comp authorized a referral to the dr in Marion but I didnt know I would not get to see the dr I had the appt scheduled with. What a horrible and mean and uncaring dr. I will never forget how I was treated. I had a hard time getting the referral it seems. I had to do it myself. My lawyer wont help me do anything anymore .All he wants to do is settle and doesnt seem to want me to seek treatment from other drs. Now without insurance Im really in a mess.I cant go to drs. on my own.Workers comp will sometimes authorize referrals but my lawyer wont help me do anything .I have to do all this on my own.He will not let me talk to workers comp.They are sending me to one of their drs. in Missouri the end of this month. The way I see it this dr. cant be no worse than the dr I just seen. I dont think your case is work related.Mine is so I only have so many drs. I can see and workers comp allows referrals although my lawyer tried to tell me they dont. I wonder who has paid him off. I really need to fire him but I am 2 years in this and Ive had him maybe a year.For a long time I didnt have an attorney.I didnt need one till one day a dr I was seeing told me I was better,my rsd went away .He took away my restrictions and I almost lost my job. Now I cannot lift over 10 to 15 pounds and no repetitive work with my left arm.Ive heard of Allsup.I will probably wait till I settle to try to start to get the disability.Where is your rsd.If you mentioned it I have already forgot. My memory is so bad.Im on 50 mgs. lyrica 3 times a day but it doesnt do a thing for the pain and burning in my wrist. Gentle hugs. Liz


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From: byrd45 Sent: 10/17/2006 12:13 PM
Hi Liz,
I wanted to tell you not to take to heart what they are saying about you not using your hand. My doctor told me point blank that RSD causes muscle wasting even if you use the limb. The Atrophy could have happened even quicker if you weren't using it but that doesn't change the fact that it would happen eventually if your body decided to malfunction in that way.RSD affects the blood vessels and lets face it if the blood vessels aren't properly carrying your blood to the affected limb then you atrophy. The worst the RSD is the worst the atrophy can be. I know that they are WC doctor's and that means they are scum in my book. I feel for you so much I have been there too. Just remember they know how injured and sick you really are but they aren't going to be honest because they will have to hear alot of stuff from the boss. It is a horrible system and innocent people like us suffer because of it, but at least if you know the score you can understand that it isn't that you are losing your mind it is that they don't want to lose their job. Which I think is so wrong in so many ways, but unfortunately it is how the system works. Stay as calm as you can stressing isn't going to change things. They are hoping to frustrate you so much you will give up and that is the game. I would just dig your heels in and remember that it is a game to them a big game of dollars and cents that is what it all comes down to. They care how much it is going to cost them and if they can frustrate you to the point of giving up they don't have to pay you and take care of your medical any longer. Keep your head high and no matter what that quack of a doctor says stick it out until the end.Sending you big hugs!
Love,
Robyn



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From: Liz3079 Sent: 10/17/2006 9:13 PM
Hi Robyn
I forgot about the rsd affecting the blood vessels.Im sure that is what is going on with my hand. My lawyer wants to settle.he does nothing to help me. Im sure I am getting taken to the cleaners. He wants a settlement hearing.I am hoping if I dont like the amount I can appeal it. My gut feeling says to get a new lawyer even though this one is in the process of setting up a settlement hearing. I keep thinking Im doing the wrong thing.gentle hugs. Liz

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From: shellie Sent: 9/23/2006 7:55 AM
Tammy, You can e-mail me directly at shellie19662001@yahoo.com if you like. I will not always be a bummer and try to find the bright side of things.

I get down and because of allergies they can not give me anything for pain, or depression so I talk to group. I have my smokes (10 to 12 a day) and my coffee and herbal tea for a vice, sometimes the young woman above me lets me have her little boy, he's going to be 3 and that pulls me out. Someone in group always says something nice or words of hope and it helps me. I just always hope everyone remembers that I only have Gary to talk to here and Ranc and I spend hours each day on the cell's but group is where I feel I could say anything and someone will see the way through and help me find the answer, be it RSD or life related struggles. They do not judge me or yell at me when all I want to do is scream and I do my best to put my frustrations down so maybe someone else can see and advise when I can not see.

I will be here if you need a shoulder, frustrated, or just want to talk.

I lived my whole life in Indiana till 2 years ago. I had no help from family that lived under 10 miles away. They would not even pick me up from the hospital during my bout with baronial phenomena and the EMS did not grab my coat or shoes they only cared I could not breath. I called my mom and asked her to pick me up and take me home mind you it was 11 p.m. and the end of November. The hospital was close to 20 miles from home, she told me to walk, HA HA funny they did not bring my wheel chair in the EMS. Now she cries because she has not seen me in over a year and worries I have no one to help me. I never had help up there the only difference is down here I do not have to learn to walk after every winter. Up there the cold in Sept would take my legs and around April/May I would have to go through the heck of learning to walk again. Now I use the wheel chair to do the long walking like store, park,mall and on really bad days, and the months after the accident before the doctor listened to me and found it broke the fibula up by my knee because he thought I was faking all the pain. I fired him and my new one is still trying to find out what is wrong with my neck and arm. She knows I'm not faking. I did a cervical MRI yesterday and I can not get the answers till maybe Friday and for sure Monday. After a year of quack doctors, medicaid red tape fighting they gave in and let me have it done so the doctor can see what is wrong. I did see a shot of the MRI where my neck hurts the worst C1,2 was white clouded and the rest showed up just fine. I can find 3 things on line that would cause it cysts, tumor, and arthritis all I did not have before the woman ran the red light and stole my good side from me. Yep, I'm bitter, mad and wish she would have had more than 2 tickets for the accident. When I thought the car was on fire because of all the smoke I tried to get out and it shot a pain into the back of my head at the area where your neck turns into head. It has been a fire from hell pain and spread to my ear, face and shoulder the more I try to use it the more it hurts. They even did a hearing test and found out I can not hear that well but my left side is better than normal for my age, funny before the accident my right ear was better than my left. I now have a ring / buzz in my ear that keeps me form being able to hear that rat pee on cotton at 20 yards like I could. I guess I am still mad because it was not necessary for her to run a red light and stole more than RSD from me and all she got was a slap on the hand and NO NO and there are days I can not get out of bed for the pain. Her insurance refuses to work with my lawyer to try and settle and you can bet I am doing something that is not me I am demanding enough $$ I can hire someone to drive me to the store and doctor since I am stuck with this the rest of my life so should the payments. At first all I wanted was the medical bills covered but since they do not even want to do that and they are sitting in collection on me I want $ for pain and suffering and harassment and frustration. Not a shrink in the world will change the bitter and fair is fair on that thinking. You can bet if I hurt someone I would do my best to make it right and make sure they had a way to the doctor and store to get better. Where have the morals and values gone with today's society?

What made the accident so bad is we were on our way to Indiana Rancie was in a rental car 2 cars behind me. His mom had been very sick and passed in the night. We missed saying see you later, her services and there was no closure for him so even now he will start to call her and as he starts, he remembers she is gone.

Sometimes I wish the woman who hit me was ordered to make sure I got to the store and doctor every week as part of her punishment for running the red light. What gets me is she acted like she was going to stop, she got up to the line at a stopping speed and then gassed it, talking on her cell phone. I had a green light for about half a block so I was the first off the line because when my light went green I gassed it to 35 the limit was 45. I pushed her car 2 lanes over and she was on the gas and a bigger car that she drug my car 3 lanes to the left thus destroying my right side of body. The front of my car was mashed to the top of my tires and it bowed my car out and broke the frame just under my seat. The air bag hit me so hard in the face it broke my tooth on my dentures and they are made out of the same stuff bowling balls are made of! I had to use supper glue to put my tooth together but I will get a new set and she will pay for it, she broke it she can buy it.

I have been to PT 2 rounds with a round of chiropractor between the PT rounds and nothing helps the more they finger it the more it hurts. The MRI of my lower back showed the the accident tore my disc and PT did not help it. The thing hurts so bad that I can not stand it and has impaired my ability to even walk to the mail box. I thought RSD was bad but stupid drivers have showed me there are worse things in life. I try to look on the bright side that I am not a quadriplegic or dead but I am trapped in a body that does not do what I tell it to do and most of the time my mind is intact.

Sorry it is so long I just am unscrewed about the wait after seeing my MRI knowing if the doctor( the one I fired) would have been on the ball this would have been over and fixed now its late enough they may not be able to fix me. I get to sit and wait to find out what the white area is and what can be done to help me. I was better off not knowing till the report comes in but no I had to demand seeing the spot that I hurt the most.

If by the grace of God they can fix me, next summer I will be in the semi and if I get your way I will let you know. You may have to meet us at a parking lot or truck stop some place we can park a truck but I would love to meet you. ((((HUGS)))) Shellie

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From: Liz3079 Sent: 9/27/2006 8:55 AM
Hi Shellie
I just read the post.I read it before but forgot what I even read. I hope you are ok. I know what you mean about bitterness. The dr. who set my wrist set it wrong and Ive lost partial use of my hand and wrist and then I got rsd on top of all that and no one even cares. I couldnt sue the dr. so the lawyer said and my former workplace is probably telling workers comp Im faking all this and so no drs. really take me seriously and in the meantime my hand is just shriveling up so bad I think its rotting off. So I know what it is to be angry and bitter.I am so sorry you are going through so much. My mom sounds like yours.She doesnt believe me either. She doesnt care if I even have a dime while in the meantime she sends my brother 500 dollars a month to supplement his army pension so he wont have to work and can live in a beautiful tri level home. He hasnt worked since he was probably 42 yrs old and is perfectly healthy.Hes now 55.The only family I have is my 2 boys.LIfe is not easy and then when you have to deal with rsd it makes it even tougher.Today I am hurting worse than ever. My dr. is in mo. because the pain management here in Illinois says I cant come there although workers comp authorized for me to.If I keep having these sharp pains Im going to the er today. Shellie i hope you can have surgery and end some of the pain you are in. But it sure wont take away the rsd. I got moderate corporal tunnel in my left wrist from the rsd. I didnt have it before the fall as I just had a nerve conduction test done 4 months before the fall. The drs. wont do surgery as they said the rsd will spread. I hope that if you have surgery it wont interfere with the rsd. Gentle hugs. liz


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From: Rittlemom1 Sent: 9/30/2006 11:55 AM
Liz, where in Illinois are you from? I have read you a couple of times now and have been courious. I too am in Ill. I go to Rush In Chicago, Its a bit of a trip, but I see Dr. Lubenow at the pain clinic there, He is fairly well known for his work in the RSD field and I have had a very positive experience with him. I know there is also another good pain clinic in Rockfrod that is doing good work with RSD. Any Chance you can get to either of these places? I wish the best for you, it sounds as if you need to get hooked up with a good comprehnsive doc who knows his stuff!! Let me know if I can be of any help to you. Kathy


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From: Liz3079 Sent: 10/1/2006 1:42 AM
Hi Kathy
I rememember seeing your posts a long time ago as you was from Illinois. I think you asked where there was a pain clinic or something in southern Illinois.I live in Centralia so Rush is to far.So is Rockford.This is a workers comp case. They dont seem to want to do anything for me. I am worried I am losing my left hand as it has started to atrophy rapidly. They are saying I dont use it but I do,I do everything they tell me to do and always have. You have no idea what I am being put through.And all my lawyer wants to do is settle and keep medical open.Its only been 2 years.I am in horrible pain most of the time .i feel perhaps if I stop using my hand the pain will stop.The whole problem seems to be no one cares. Did you ever go to any drs. close to where I leave. I am not sure where you live.I thought in Southern illinois.I am so tired of hurting all the time. Now my unemployment has ran out and I am living on my savings with no money coming in.My lawyer says I need to try to find a job. I really dont feel like working like this.I feel I have a bad lawyer and I feel the last dr. just flat out told a bunch of lies. What he said in the office and what he put in the medical report was 2 different things. He made the remark he never in his life seen a hand atrophy so fast in 2 years from rsd yet in the medical report he said there was no difference whatsoever in my hands. Its obvious one looks different. I think he got paid off.I am just so frustrated.I dont understand why workers comp wants to be like this.I dont lie,I m not out to cheat people,I just want someone to help me.Gentle hugs. Liz


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From: Rittlemom1 Sent: 10/1/2006 2:37 PM
Hey Liz, I am in in Northern Illinois , Elgin I am not sure what part you are from but it sounds like you are further south than I am maybe? You have got to get to a better dr. my friend. comp or no comp the sob you are dealing with is doing you wrong wrong wrong in many ways. You will never get your social security disability with him keeping records like that and talking out of both sides of his mouth. Between good drs and a company called Allsup I got mine the first time out in less than a year. No fee unless you get it then they get a 1/4 and they do all the work. It's not to late for you to get things turned around if you can get with a respected dr. that comp. can't dispute rather than some jerk like the one you have seen it seems. Are there any university hospitals by you? many times thats the place to find good drs. and or clinics. I really wish you could get to Rush even if just for an evaluation to over ride the garbage this other doc has written in your records. If you check Lubenow out on the net you will find he has written , spoke, studied, etc RSD what better way to prove your case huh? I was diagonsed by the surgeon who did the surgery that caused my RSD , backed up by the pain dr. he sent me to, then lubenow that I went to when that pain dr I was seeing reached the limit of his knowledge, also a neuro and SS dr. so I was very lucky to never have to go through the garbage that many of you do with the not believing garbage. All the other garbage that goes with it though,lol Again let me know if there is anything I can do to help at all, Kathy

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From: awife8281999 (Original Message) Sent: 9/18/2006 2:17 PM
Hi, my name is tammy i am 32 years old with a 14 yr old daughter and 5 yr old son. i am married . i have had problems with my knees and my back since i was 14 when i had gotten in car accident. throughout the years my back gave me so many problems and although i brought up my legs noone listen finally when my son was 3 i had fallen down the steps ( happened here and there many times due to knees giving out) well i went to surgeon and when he did exrays and mris both knees were in bad shape so i had surgury on both in august of 2004 i had bilateral and artho on both but on right i aslo had petaller surgery my knee was not where it should have been . and i had something else done. well my feet had always either bruned or ICE ice cold. well after first surgery was in pain all the time, burning, spasms , cramping, if leg bent down to long foot (right) goes red, then purple then blue . so now i need foot staright all the time and up. if on it for longer then 10 minutes leg goes red with blotches all over and knee swells and foot. surgeon noticed adhesions so another surgery for removal of screw from first and removal of adhesions well it didnt help pain went into my thgh area after one appt after another and 178 theraphy sessions he finally decided to send me to neruologist. then after NUMEROUS test, xrays, ct, blood flow he diagnoised me. i was happy that finally i was belived with all the pain. however didnt truely listen to him say no cure thought well there has to be something. well went home and started reading and CRIED. well neurologist pushed for me to get surgeon to at least get me off cructhes well had just my kneecap reaplced in april. surgery was horrible and the pain was horrible between the surgery and the crps iall i could do was cry for about a month. my mom thinks this is just a little bit of pain not debilating at all. she believes i am not working my leg hard enough. as a matter of fact that is what i was told today by her. that my pain isnt that bad. it could be worse. grrrrr.. well this has also done so much to my marriage .. and finaces. the hard part is that noone gets it, i showed the the pain index chart and they look at me like yeah rite your not in that much pain. what they dont relalize is i get only couple hours of sleep a night i cry most the time when noone around . i hold everything in when all around cause they look at me like i am nuts. my husband cant sleep in same bed cause i cant handle a touch to my leg, shoes are heavy and feel like they are cutting off my circulation. so many things. i use forearm crutches and have been on cructhes since aug 2004. my leg is atrophying no matter how hard i try to work the muscles. i cant walk far the pain in my knee and then the crps gets to be to much. i can only drive within a 10 block radius becasue the pain becomes to much. that is why i looked for this site. noone around me understands or even tries. comments made have gotten to me. and just becasue i dont cry nonstop doesnt mean the pain isnt HORRIBLE it is that it takes to much to do it. there is still so much yet, to much and dont wanna bore. i have become lately so angry. more with the world around me and the people i thought i knew to find out i didnt.



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From: shellie Sent: 9/18/2006 4:49 PM
Where do you live there might be a member close that could stop over. I met my first RSD'er in the flesh and it sure helped. Not only have they helped me understand but some do not have as much pain as others. My pain is killing me in the late afternoon but most days my mornings are good almost like nothing is wrong till I start moving around and each step I take brings on the pain.

My first go around was much like yours except the doctor did not tell me there was no cure. He told me to take some pills for a few months and he would see me back in about a month and to call if there was a problem. PROBLEM I did like you and googled what is rsd the minute we got me into the house. I could not breath, make a sound, not even cry. I thought this can not be right. I refused to accept it.

Take it from me it is harder to hide it than to accept it and just take the day as it comes. I use a wheel chair to help me through the stores. Sometimes even in the house. I know with not sleeping and dwelling on how you think your life is over and you are losing your family will depress you real fast. Maybe the next time you see the doctor you should ask about it, maybe they can give you something to help with the no sleep or a antidepressant to help. I remember when someone in my first group told me that same thing I wanted to scream I'm not depressed, I'm in pain! They were right tho. I was depressed but the lack of sleep and the pain clouded over my judgment.

I did lose my family, myself. My husband and I divorced and he found out that he needs me as much as I need him so he is back and has been back for 3 years after taking a 3 month vacation away from the family he saw the grass is not greener on the other side. My daughters are 19 and 20 and I can not even get them to return my calls to see if they are alive. My son is 14 and he has stuck it out and is always by my side and even tries to take care of me on bad days.

You may not think so right now but RSD was a blessing for me. No, I have not lost my mind, only temp on bad days, LOL. See I was a driver I burnt the candle at both ends and the middle. RSD made me come to a full stop. As they got the pain managed I still hated being stuck with no life. I woke up a few years ago and realized something. God let me have RSD so I would slow down and notice my kids growing and love them more and if not for RSD I would not have been sitting on the porch long enough to see a humming bird at the feeder and see that their tongs are like a clear plastic straw, or be able to hear it beep like a finch.

I'm not sure if it's my age 40 (27 again) or the RSD that taught me what love really is.

I would like to start a list and the rest of the group can add to it.
I know I should start this as a new discussion but I think right now maybe you need to know there is a light at the end of all this and you just got to look at the bright side of things or RSD will take a strong hold. Do not dwell on things you can not do or change. Just do your best every day.

The reasons I am thankful for RSD...

I slowed down to enjoy life and my kids.

I am thankful for bed time because each day is a new start.

I have met some really great people in group that have a brain when my is stuck on pause, to point me in the right direction.

I am also thankful that the group understands and helps me when everything they give me for pain I am allergic to, that group does not judge me when I vent I can still show my face.

I am thankful for the peripheral polyneuropathy that goes with my RSD so I do not feel as much pain.

God has blessed me with RSD because he knows I am strong enough to take the good with the bad and still thank him for at least letting me live.

I am thankful for the allergies to drugs so that I can still drive the few blocks to the doctor or store. (Some days I'm the one yelling out the window to the idiot driver that does not signal, or cut me off, but that's a bad day and I can barely stand myself.LOL)

I am thankful my neighbors think they can catch what I have so they do not knock on my door to visit so I can stay in my shorts and t-shirt 24/7 and not have to put my teeth in so my mouth will swell. Only the woman above me is brave enough to venture down.

I am thankful for the bad days so I know a good day when it comes.

I am thankful that all my family(except Gary and Ranc) is 1400 miles away so I do not have to deal with their crap of they think I am faking it, made it up and no one can hurt that much your doing it for attention. After obtaining copies of my medical records the doctor thought it was RSD in 2000 but the diagnosis did not come till 2001.


I am sure group has so many things that are thank full for RSD for. I hope this group gives you the ability to see this to. Who knows maybe one of us will get the right doctor that will find a cure to share with us all. Right now the only cure I have is be positive, take the day how it comes, and thank God for RSD and finding so many understand people in this group.

We are all here for each other. ((((HUGS)))) Shellie



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From: awife8281999 Sent: 9/20/2006 10:50 PM
ty so much shellie your words brought tears to my eyes. i appreciate everything you wrote down and your words are so true. i have myself been thinking of telling my neurologist i think i need antidepressants it is just getting the words out of my mouth. I live in milwaukee, wisconsin btw. i understand the thoughts of it making you sit to appreciate things and your family i have done that since 14 and have always taken in every second of everything since 14 because i was told back then with my back i would end up in wheelchair. i am 32 they told me by around 25 hahahahaha they were wrong lol it wasnt my back it was my leg lol. everyday i have counted my blessings for being alive. i have had a very hard life before this had happened ( long story) it seems that after accidnet i was in fight to keep moving with my back and my legs giving out then a fight for my life with my ex then fight for my life being a single mom then court battles . then this . so trust me i am one strong lady but you get so tired after one fight then another. i have had a hard time in my marriage, the selfish ness in the man i married, the lies, the so much. 75 percent of the time he is the man of your dreams but then the 25 well i dont want him in front of me. because i dont have much around to help i have had to make sure i get up everyday take care of the kids, the cleaning the cooking . the pain is so horrible i could scream but things have to be done. tomorrow i am going and getting the essure tube blocking procedure to make sure i cant have any more kids cause there is no way i could take care of a little bitty one. i have to have my knee bent which will be horrifying let alone it is being done upstairs at office which has steps and they are horrible for me. i just want one worry off me . well sorry so long winded tyvm your words meant alot and yes this seems to be an awesome group .. HUGS tammy


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From: byrd45 Sent: 9/22/2006 10:42 AM
Hi Shellie,
What a wonderful outlook to have! That is how I try to look at things too and it brought tears to my eyes to read your post. I used to be so angry when I was first diagnosed and then I just woke up really woke up if you know what I mean. I couldn't keep living with all that anger every day. I didn't want to go through life like that. Would you mind me copying your post onto a new post that everyone could add to?
Love,
Robyn