I can't sleep burning pain so bad again on the bottom of feet.
 

Hi everyone thank you for helping me with my sons injurgy and all my pain and fallling. Nothing has changed with that yet and I'm having problems with my visioon really bad and the burning on the bottom of both feet . I have the burning hot stabing pain on the bottom of both feet again that wakes me up every few hours now .Like I did before but its really bad and I just want to scream but I can't I will wake up my son and he can here me crying from the pain so I am doing everything to try not to have him hear me but sometime I can't help it .I have to sometimes just let it out so it doen't eat me up. I end up rocking back and forth like a child would holding my legs or fee. I don't know what to do. I have stared having problems with other issues that I needed help with that you all were right there for me helping .Im having more since the stiffness and other things my vision is getting very hard to see letters are blury or I can't see them and me eyes hurt and sometimes feel numbe and I am having problems hitting the right keys to type and Im getting small heachack on one side of my head then the other side of my face is starting to get numb when I had my teen when he was born right after I kept saying I felt like I had a stroke and the drs didnt do anything because 23 hours of laboer all natueral no pain meds or injections and at the end it went bad bu I hung in there and he came but 24 hours when I went home I kept telling my mom something was wromg I really thought I had a stroke a few hours later with the numbness getting worse and my face started to change my dr said after my mom called after I woke up and the side of my head was killimg me and my face had droped he said the dr said get her to the hospital again so we went back I didnt have a stroke I had bellpolizy (I dont think thats how you spellit) but its an infection in the nevers and it acts like you had a stoke My left side of my face feels like that again. Does that happen with full body RSD? My lips are numb and my son said that they are swollen and to type I have to close eye to see better the other side of my face and its the same side my head hurts. It was hard before thats why I wrote everyone to tell you what was going on Im still wanted you all to know that i was still here but I wasnt going to be on for a little bit because of my hands and my son getting hurt and having to go see an surgeon for him this week but Im getting even more worried about these things with me is this more RSD ? I really cant do this it is moving so fast ,I was hoping things were going to be going okay but they are not they are moving faster. I have done somethings from people have given me help with like asking my dr for home health and some other things that friends here have reminded me to do but I am getting very worried about being alone here with my son and if it is RSD whats next Im holding on tight but my son said to me a couple of days ago he has noticed that all of these things are getting bad enough that he is watching me and he sees them and he is keeping his friends to be careful here because Im getting worse and he is really exsplaining to them what RSD does and it happening to me and his friends come in all sad and its braking my heart for my son to feel like this and he is so worried he is telling his friends how bad I am getting...................................I will check in but I might not email back this week unless Im can..............Thank you for all of your helping me ,ideas and info and all the careing that everyone has me I hope this email makes sence Im having such a hard time with that and that is what got my sons attention that there was somrthing wrong a few weeks ago, so thank you again.................to all


Best to all and GENTLE HUGS TO.......I think of you all............everyday,,,,,,,,,,

Karen

I am really sorry that you had a bad night. I had a bad night as well! I hope your day is better than mine has started out to be! Have a wonderful day...... Here are lots of gentle hugs sent your way!!:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:

Karen
I use the lidocaine patches on the bottom of my feet for the burn....it doesn't take it all away but gets it a little cooler. The hard part is deciding whether or not to use them in the day or night. They are 12 hours on and 12 hours off, so depending on the day I have to choose when to wear them. They do add a little cushion to my shoe during the day so that's a plus :)
Dana
Hope your day is turning out better than your morning :) One thing I've learned is I can restart my day at any time....so sometimes I have a lot of mornings in one day ;)
Jeanne

Bronco4586
 

Dana, Thank you so much. I was reading last night one of your messages and if I knew you were having the same problems I am and was having with dealing with this SH** I would of been right there .I understood everything you are going through the alone way I have make it with full body and in a chair and all this pain is finding people that understand and care I mean really care and are allways here for you. I am so close sometimes getting divoced in the middle having a teenager that I have full everything and Im starting be have seeing problems and writing and this morning I wake up after a couple of hours and my half of face is numb and its hard to talk or say all the words the right way and my son was hurt bad at school 2 weeks ago and today he woke up and his rib is syicking out so their is more damage then they thought but I try to breath but thats even getting hard and I was a hospic nurse I took classes at 17 and got my nursing lience thats all I wanted except a child and a husband I have a 15 yrs old but lost everything ealse but I keep waking up I dont know why but Im still a fighter and you are to. Email me anytime.......................Take Care Gentle soft hugs Karen

I was thinking the same thing as Desi - if these are new symptoms you need to have them checked - just in case it is something new and maybe "fixable" or treatable.

Desi
 

No I havent' for that I was in the ER tonoight with my son for him and I had to call my mom because Of my vision .Im scared. I used to get migernes when I was married in the 90s the first time its been a long time and I had got bellposils (I dont think I spelled that right) It an infection in your neverous system I had it after I had my son 23 hours of labor and pushing so hard I thought I had a stroke and with in 24 hours going home I couldnt smile and talk same systems But the vision was fine it staied that way for awhile my mom want me to see the er dr but they wouldnt do anything here and my son is going to see our reguarl dr Wed. and she wants me to tell her.I was told that some people have vision problems with RSD when it gets like this and headacks and other have face mumbes I dont know I was scared enought to call my my from the er for my son she came and drove use home I cant see at all right noe the lights are making to worse I see colors but not other things . Im a nurse but this is not good do you have any idea? HELP ME IF YOU DO IM SCARED AND I DONT WANT TO LOSE EVERYTHING MORE THAN I HAVE>>>>>>>>>>>> THANKS Gentle Hugs Karen

Jo55
 

Im scared please read Desi I thought maybe the infection came back my mom said it can specially under all this stress with me and my son hurt and divorce and being alone here and full body but it been coming on slowly and I have started to lose control of insides Im 39 Im not ready I have been fighting with another long health issue from a dr from surgery that went bad feeding tubs for 5 yrs I cant do them anymore they burn my vains Im not even 100 pounds if you look at the two pics here they are only 3 weeks less then a year difference I cant keep weight on I just dont know anymore Im here for my wonderful son he keeps me going but what if I cant he told me that he is watching me swink and not see and hurt and truning into a shell the other day and today. He knows Im fighting for him but Im tired and headacks and vision and half my facenumb I dont know >>>>>>>>>>Can you help Jo55 I have been missing both of you (YOU AND DESI) Thanks gentle hugs Karen

How long has it been since you had a complete work up?
MRI or CT, full blood testing - those kinds of things.

Do you have a doctor that is actively directing your care and doing follow up ?

Hi kitti, I just want to let you know , we are out here and thinking about you. Hugggggggggggggggggggs

jo55
 

I have a great primary dr but CT OR MRI years fully blood test a few months a think I am having a hard time thinking and puttings things in the right way even writting emails my son said they are not making the same sence as before it sounds like it to me and when I email if I read them back its not. Its hard to find good care here drs are leaving to much to live here its hard. I dont know Jo55 I fill stuck i went to UCLA in Calif teaching hosptial but that was 3 yrs ago they said they same thing my pain dr a different dr then my prim dr said I have RSd and its bad and moving fast and they wouldnt do anything ealse I dont know ......I just want help if I can get some kind my birthmom a yr ago I meet her she has fibro. and I have a half sister in a chair to but she couldnt talk about it and I have been in my chair 3 yrs. and still have my walking ahahhahhacast on after 4 yrs no bone left.............Karen

rashelle
 

Thank you very much..................How are you? ................Gentle Hugs

Karen I am here for you to

theoneRogue420
 

Thank you for taking the time to email me unfortally I have been on the patches Lidoderm from day one and they haven't helped me. Not even a pinch I am on pain (FentylePatches) for 13 yrs I dont know if thats it or what .I wish they did. I would do anything at this point. I hated saying that they didnt help at all because Im so feed up but I keep trying like everyone does. and I also hate to say this to they took my part of of intestisnt that takes they food or drink and divides all the stuff and they removed that so I have tried all the differnt drinks and anything liquid or not and its usually out of my system within 20 minutes i asked about a transplant they said because it tissue I would have to have all stomach liver, bladder transplant and they dont want to take a chance so I do really oh really understand but I am going to try again I try drinking all different ones even the ones from the dr about every year because maybe one time something will be it. I will let you know . I thank you so much for trying to help me please if you here of anything keep in touch with me and even you dont please keep in touch......

Gentle hugs and sweet dreams

wishing you the best karen

Kitti
 

I have you in my thoughts and prayers. I hope all goes well!~ and you get better real quick! Dont give up!!! If I cant then you cant either!!!! Ill fight with you!!! emai me anytime, I had another bad night, they increased my avinza again today. I am only 26 and I am not giving up either....


:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:

Dana
 

Hi Dana,
Thank you, You said you ware 26 and not either giving up ,When I was 27 I had a bad sugery and shouldnt of lived but I did I faught throught and why to have this RSd. But now I (we) are going to fight this togther. Im not going to give up and you said you are not going to give up and I thank you because we will diffently not going to give up and together. You fight I fight we will fight togther............But I am not going to be here for you just this I am here to vent because I vent to people here so I want you to know go ahead and vent to me if you will and feel good about it. Im here so please do.

Thank you for making time to email me when Im introuble I spent the day in the ER on Wed because of headachs ,numbness in my face and because of not being able to see .I went through to two different pain shots and still having the same problem and Im scared nothing has changd the ER Dr said he thinks its just a headach but my reguarler dr said that I need a CT and MRI scan. But Im not going to give up and you are not either and Im so glad that we can now do this together . Use me for any help you need fell like you need a little or big help get though something email me and we will fight together. We are NOT ALONE we WILL FIGHT TOGETHER !!!!!!!!!!

Thank you again for caring and your email and remeber Im here always email me anytime PLEASE.............................

Take Care
Best wishes GENTLE HUGS

Karen

Went to te ER bbecause I got to sick
 

Thank you everyone that has been helping me..........I went to the ER oon Wed. spent hours two ddifferent pain shotsbecause of my vision problems and face numbness and headaches . My mom asked Karen do you need to go to the ER I said finally yes I do Im really sick. She took me no test was done they just gave me two different shots NO MRI OR CT. I went right to my dr because my son had an appt she saw him than I said I need to talk I told her and said what test did they run i said nothing just gave me shots I feel alseep from the pain before leaving my drive away my mom said to the hospital and slept in the ER she sat with my son and I slept after the shots but everytime I woke up PAIN !!!!!! So my DR when I saw her she said get me a CT ,MRI . She is worried she doesnt know if its RSD or something ealse she doesnt know much about RSD so she is going to be sending me for the scanes and she is going to try to get me into the best Neuro dr thats here I hope SO THANK YOU EVERYONE that has told me that they are worried and what I should ask for to be done Nothing has changed with me feeling better but I hope they can find out soon I am just not going to give up but Im just noy well yet.....

Thank you evertone.

Karen
Gentle Hugs to everyone

Karen
I'm so glad to hear you're fighting this thing and getting the tests done...hang in there :)
Jeanne

Thank you for all the help. Its Thur now and Im sicker. More headaches bad the wose. Worse than the day before,more nubness and and now I have chest pain I have heart problem before but I was doing well intil today and I can only see color still Im really sick. I sould be in the hospital today but Im holding on does anyone ealse have of these things or all? Please let me knowI havent been so sick like thi before I thought I was before but no not intil all of thse things together. So can anyone tell me it is rsd ?

Desi
 

Thank you I know you are not scaeing me I am already scared.its Monday the 4th and Im not getting any better. I keep calling the drs they say go to thr ER well they dont do anything because they dont know what to do Thwey just keep giving me pain meds that dont work .Today I took my tmp like I have everyday before it was 97.4 tonight 99.5and I slept into 4:00 pm . my son went bak to school from his inury from school he missed 3 weeks so I juess I finally really slept I dont feel sick like the flu My head is bad and face is still numb and the vision is the same ,my heart beat is better but Im having a hard time breathing . I sometimes have to take in deep breathes and it makes my head worse .I keep telling the (my) dr and I get nothing I will end up in the hospital because of fever and than maybe they will do something I dont have the flu I dont feel sick Every inch of my skin which i haaad from the RSD hurts but it hurts even more and my bones hurt every inch hurts I cant stand this I even called my mother crying telling her that I need more help and she is helping me with my son taking him to school andstudying for finals since he cant write and do alot since his write shoulder was the one that has been injueryeed but it doent look like he needs sugery on his shoulder but we will know more in a month the dr said. So she my mom has been helping me with him but Im falling in the crackes I dont know what to do.......The pain was horrible I cant handle it right anymore with all these things. I AGREE with you totally I cant seem to get any help I called my mom tonight and told her that I need her to call my drs and matbe is can get some where tomarrow because Im not...............So I will let you and everyone know.................

Burning feet
 

Sorry you are having so much pain. No amount of pain med will ease this pain. It just helps me to not care so much :rolleyes:

I also use lidoderm patches but mine contain Ketamine also. It helps me with the burning on the bottom of my feet. I leave mine on 24 hours/day as the doc said it won't hurt to do that. I've even worn 3 when I'm desperate

Wishing relief and help comes along soon.
:hug: Hope :hug:

HopeLivesHere,
I have the lidoderm also but it use to work or made it more covertable at the beginning and when it went to full body the drs and I cant seem to find anything that would just take the egde off thats all I would like at all. I didnt know that you can get some with Ketamine .I was going to go out of the counrty and do the coma ketamine but I cant right know is it like that the same mediacation ? I will ask my dr about the kind with the ketamine in with iw. thank you I hadnt ever heard of it before.So thank you very much..Karen

rsd kitti---so sorry you are feeling so bad..i too have the intense burning of the feet..it started on my left ankle ,after a fall in the shower during my vertigo fun, now has spread to the other foot..nothing seems to make it any better..and they are not even sure what it is from(rsd,fibro,arthritis???) so many questions/no answers...very frustrating and very hard to walk (esp. with any type of footwear) if you get any answers or anything you find that at least relieves it some--please let me know--i am losing this battle quickly and am still awake at 5am,due to the pain,and have to be up at 7am to put brother on bus--and watch my friend's 4 month old baby so she can work--probably not much longer--as the baby loves to be carried and it is so hard to walk--AGHAGHAGH--MOONSTAR :eek:

moonstar
 

Have you gone to a pain specialist? I was told that I have RSD within a few months after I broke my foot in 5 places fall down two steps that were not there it happened at my brothers house who is which an artic. and contractor and I'm into June 14th will be 4 years that we will be the hardest day besides I hate to tell you if you dont know that Im in a wheelchair I only have a couple of pics of me in a chair because intil a month ago when my health has changed even more I couldnt hide it anymore I have full body RSD Im 39 and raising a teen boy and got divorced in the middle Im a hospic Nurse Im ex husband is an officer and nurse but he couldnt deal plus other things and Im having vision problems Im seeing color thats it and numbness halve my face .I would ask you if you have seen a pain specialist because they dont look at you like you are crazy which you are not..............dont ever think that a lot of people say that lidoocane pacthes help that didnt for me its supposre to work for 12 hours at a time I havent walked since the day of my accident 20 minutes after getting to my brothers and we didnt want to go we did for m son so he could see his family so it was a accident I will let you know if anything had helped I wish you well I was wondering if you have tried injections and if you have tried lidocane drip.Let me know what you have tried Im like you I havent slept normally for 4 yrs it was etter when I was dating a man for a year he is wonderful he moved to out of state with out us we were going to go with him I dont know what happened I saw him in Dec he spent Chrisymas sperise us and I went in Jan 24 red long stem roses for V-day and the last day in Feb that was it I talked to him He was going to call me back never again we talked at least 3 times or more a day we had a special relationship he taught me to drive left foot and do things that I can do but to remember that I still have limations , and that he carried me to the ocean so i could be with our kids his and mine and then he rented a chair for the sand I live on the central coast in Calif. I hadnt felt water or sand in at least 4 years so try not to stop if you are still walking try not to stop doing things that you like to do I know you are in horrible pain we both live the same hours alot of us do please let me know what you are on meds and you have tried I cant help you as a nurse but I will try to help you as a person that is living live that is so hard. Im up the same hours you are up also. Do you live in Calif? If I can think of anything I will let you know because Im I say falling because thats what it feels like to me. Please let me know how you are doing and please keep me informed and I will let you know if there is anything that is helping me nothing so far has helpedd alot but I have done and tried so many things stimaltors and pump injections I was going to go out of the Counrty to try the coma kiamine but I ran out of money from my divorce but I have been thinking about selling my house but it hard speially that no dr in calif does the shots and you have to have a dr that does it in order for them to do it I was moving to Oregon but thats where we were moving together to and I we did the reacher there but live has to move on I guess. Its one of the hardest thing I have had to do in my 39yrs even more then natural 23 hours of child birth. But I am here to help as much as I can everyone has given me so much here. Do you have myspace ? I have it and I finally opened the doors and told people that is how I meet the guy I was with and we only lived 7 minutes away from each other I kept only 12 friends and since March and my son when he was 14 he is 15 now he had or asked me to write about RSD on my blog so I did but becuse I hae written about how I feel you can see it all and also on my page their is more than half of the people have RSD and there is group that will help you also let me know and I will give you my web site. Please keep in touch with me I would like to hear from you and let you know some other groups . Can I put you on my friends list here to so we can keep in touch ......

I wish you well and I cant work anymore so I understand how it feels totally losing yourself but try not to it has taken me this long with the great people here to make me feel like Im still Karen but I still have lost of bad days but I come here and somebody is always here and they help e through it even if its just hang in there I care and Im here for you.........So rememeber those words because Im here for you through your pain and happeness through your cry and smiles Im here everyone is.............................I think we can became real good friends

Gentle Hugs
Karen Email me anytime.................

Hang in there, Sweetie!! :hug:

Did your son find any of those carer sites helpful?

I am thinking of you and praying for you!! Sorry things have been so rough on you, I sure hope things get improving soon. I would give you an extra spoon, but lately I haven't had enough myself. I know what you are going through as far as pain, and hiding the fact that you are going through so much pain. :hug:

Hello Vanessa....
 

Sorry, I mixed up the ID's here... I meant to put "Hope" in the title! DUH?

Can you tell me more about the Lidoderm patches with ketamine? I'd like to research that. Thanks...

Also I'd worry about so much lidocaine 24hrs/day. The patches should put the nerves to sleep for a while, as you
take them off for 12 hrs. Continuous application can affect the heart, you know. I could not find documentation that it is
safe to use them that way.

BTW I have burning feet too, and find that the patches work better for me,
on the tops of the feet. Have you tried that way?

hey karen...you are going thru so much all at the same time..and still are being so strong--friends??yes we definetly can do that..i am not in calif.--in ny..but what is distance betwen friends???
as far as pain drs.. i went to one who was a complete jerk and dismissed me in not more than 15 min.-i see 2 neurologists,2 orthopedics(one of which gives me all my pain meds) i have consulted with 3 pain specialists who tell me that i have been given every treatment by my other docs that they would have done..soo in other words don't bother (or bother them is the attitude i got) i was on soooo many different medications(that didn't really work) i am currently taking: oxycontin,lyrica,vicoden es,lidoderm patches and zanex...i was on oh so many types of antidepressants with no results so i flushed them--went to a psychiatrist who put me on prozac and just kept on increasing the dosage,again with no help, he was so far away from my home that i had to stop going. with the vertigo it is not easy to make the appts and if i missed one he billed me anyway (even with over 24 hrs notice) so i am trying to cope on my own. with the help of my friends here i seem to make it thru the worst of the nights--i seem to be going to extremes with my sleep problems--either i am up with insomnia or out in a coma like sleep--
you are in my prayers..feel free to pm me anytime you need to.it may take me time to write back--this is my boyfriend's computer and he hogs it alot during the day--and then late at night--i try to get some time in when i can..he is in las vegas until monday so i am having unlimited access this week and am enjoying it..if it was not for this support group i don't think i would be here today--so from the bottom of my burning feet i thank everyone for being there for me...
stay strong...will write more tomorrow----moonstar (linda) :hug: