i had foot surgery on june 24 20011 and a week later i was diagnosed with RSD and i was reading some litature on it and saw that there was stages to it well i got a good taste of it yesterday i was sitting in my recliner and all of the sudden i had pain i never felt before i screamed and yes i cried that was the worst pain i have ever felt in my life so anyway how do i know what stage im in doc has me on lyrica and oxtcodone annd i cant sleep at night it seems i have more problems at night so if anyone can help me i would appreciate it oh also i have alot naseua and run a fever is this normal
hi eliza sorry to welcome you to this board, but welcome. What kind of doc are you seeing? I also got RSD from foot surgery in 2009, I had a mortons neuroma removed.
What kind of surgery did you have? You should be getting sympathetic nerve blocks and doing physical therapy. As for fever I havent heard of this as part of RSD, but doesnt mean it cant happen. How long ago was your surgery, could you possibly have an infection from surgery to cause the fever? I was on lyrica but couldnt tolerate it and switched to neurotin.
I am on oxycodone also both the oxys and lyrica can cause nausea but should pass after a few weeks. A pain management doc should be able to tell you what stage you are in.
Stay away from ice, it can cause your RSD to spread. Mine has spread from my left foot up my entire leg into both arms and my eyes, also to my back and butt cheek where my incisions from having a spinal cord stimulator implanted are.
My doc told me when my RSD started to spread I was in stage 2. Now I dont really bother with what stage I am. I am just trying to cope and have some kind of a life.
kelly
Oh I forgot, Your doc should also put you on some kind of med to help you sleep, RSD lives in your sympathetic nervous system, which among other things controls your sleep patterns. Not to mention pain keeping you awake or waking you up. Here is a list of my meds First I have a spinal cord stimulator. I take neurotin for nerve pain, oxycodone for pain, my catapress patch for nerve pain, restoril to sleep, zanaflex for muscle spasms, a ketamine compound cream for the incision sites for the pain, and 2 different eye drops for my eyes.
hope this helps some
kelly
hello thank u for replying back,i also had mortons neoroma on right foot and a week later i was diagnosed with rsd im seeing a specialist now im on lyrica and oxycodone to not much help yea i found out about the cold it hurts so bad but mine feels like it has spreaded up right leg and maybe my left leg to i go for a mri today and im nervous of what they are gonna find i will keep you posted thank you again
hello again,im also haveing to put eye drops to i have severe dry eye syndrome,and i feel mine has spreaded because im haveing pain and numbness in right leg left foot and a wierd pain in my arms and neck and aslo haveing alot of headaches,im seeing a pain management doc he is the one that put me on lyrica but im going to ask him about neurotin does it make you gain weight,the pain i have is so unbareable most of the time i cant concetrate at times and my memory has gotten a little bad my husband says i repeat myself i hate that i was going to ask you do you get shakey sometimes thank you for listening to me i feel that some dont understand what im going threw i mean my family its hard to explain to them how it feels
Hi eliza, ah constantly searching for the right word its always on the tip of my tounge, but can never remember what I am trying to say, or like you I am constantly repeating myself. As for the weight gain, My RSD caused me to lose weight rapidly, I lost 40 pounds in 2 months since I have started the neurotin I have quit losing weight, but havent gained any. I am shaky alot! the RSD affects your fight or flight response its constantly on. RSD can also cause tremors that will make your hands shake. I am on prednisone drops every hour in my eyes for the swelling my retna swells which has caused scaring on my pupils and now my left pupil is shaped like a starfish. I also use cyclogel eye drops twice a day so my pupils will dilate. I will help you anyway I can! I absolutely know about loved ones not understanding, and they really try so hard to understand, I dont feel its fair for me to vent on them so I use these boards, because all of us are walking the same path only in different shoes, and we understand each other here. Your RSD could be spreading Have you had any sympathetic nerve blocks? ask your pain doc about them. I wish I still had my neuroma if I only knew then what I know now whew boy I would be happy with that neuroma.
wishing you pain free days and sending soft hugs.
kelly
yeah its very irritateing sorry my spelling getting bad oh i bet your eyes are hurting im so sorry,yeah the doc says the next step will be the block.yeah i dont want to vent on my family either thats why im on here to it feels good to talk to people who knows what im going threw.i havent gained weight yet i have lost 8 pounds since my surgery and i go see my doc next week hopefuly he can tell if its spreaded it sure feels like it has i suffer from ulcer colotis as well high cholestrol to its takes a toll on my ulcerative colotis also im haveing trouble eating i have to force myself to eat and whe i do i get sick its just so frustrateing i get so irritable because the pain can be so bad i cant handle any air that hits my toes very painful i have to wear my surgical shoe to bed because i cant handle the blankets touching my feet anyway im sending soft hugs as well and may you be pain free god bless you i will be praying for you
oh i do have alot of shakeing to especial when im in pain but it hits me out of the blue i also have problems holding my glass or picking up the milk jug do you have this problem to
I iam always dropping things its like my hand just quits working out of the blue with no warning! I have switched to plastic cups and plates, to expensive to keep replacing glasses. My hands will get really weak and it seems as though the coordination is no longer there at times I get really frustrated. I have learned to sleep with my foot hanging just slightly off the end of the bed, I cant have my foot dangle though because it turns so blue and feels like its gonna explode! Nerve blocks right away are very important! when my RSD spread to my left hand and arm I got a nerve block that same week and I swear thats what put that hand and arm in remission, its been almost a year now and no pain in left arm and hand, too bad I am right handed lol.
kelly
yea i know what you mean all i use is plasti sending light hugsc now on the ice part in your other messages did you mean i cant have ice in drinks or just on body parts i know when i get near the ice box the cold air comes out hits my foot oh its painful you know even heat bothers it i can only take luke warm showers i love takeing baths but its so hard to get up out of there today im feeling bad myy body aches my leg is so stiff my foot hurts realy bad i cant wait to go see the doc my eyes are hurting it feels like my eyes are swollen and very sensative to the light.it seem the more i walk around the stiffer and hurt more but i cant handle just sitting around,i use to be so active i exercised everyday it seemed i was always doing something but now its so hard to get around well i hope you have a pain free day god bless you
Hi eliza, I meant no ice on your RSD the cold really hurts us, and the shower is horrible water has to be luke warm and if the shower water hits my foot or backside incision sites it feels like some one is throwing hard little rocks at me, I used to love baths but its so hard to get up and down out of tub and I am so afraid of falling. You have to excersise some I know it hurts but your joints will freeze up I cand no longer bend any of the toes on my foot and can not cross my left leg over my right I have lost so much range of motion. I would go to a physical therapist who knows RSD and have them show you excersizes you can do. But on the other hand if you over do it you can cause pain and spreading its like a double edged sword if you dont use it you will lose it if you use it too much you could still lose it. Arghhh its so aggrivating isnt it? Have your eyes looked at ASAP an opthamologist, Thats how mine started sensitivity to light, swelling, and the whole white part was blood red I was really creepy looking for about 4 weeks.
Kelly
Hi eliza, I meant no ice on your RSD the cold really hurts us, and the shower is horrible water has to be luke warm and if the shower water hits my foot or backside incision sites it feels like some one is throwing hard little rocks at me, I used to love baths but its so hard to get up and down out of tub and I am so afraid of falling. You have to excersise some I know it hurts but your joints will freeze up I cand no longer bend any of the toes on my foot and can not cross my left leg over my right I have lost so much range of motion. I would go to a physical therapist who knows RSD and have them show you excersizes you can do. But on the other hand if you over do it you can cause pain and spreading its like a double edged sword if you dont use it you will lose it if you use it too much you could still lose it. Arghhh its so aggrivating isnt it? Have your eyes looked at ASAP an opthamologist, Thats how mine started sensitivity to light, swelling, and the whole white part was blood red I was really creepy looking for about 4 weeks.
Kelly
yea the ice or cold hitting it is very painful you its something you and i had same surgery but yours is the left and mine is the right and we both suffer almost the same symptoms sorry toask you this but how old are you im 43 and yes i also get so aggravated this pain we suffer it can be such a nagging feeling at least for me it is and i feel like its makeing me crazy i been to a eye doc he says i suffer from dry eye sydrome ihe tested the tears level and it came up as 0% so he just told me to take over the counter drops im not allowed to take visine it makes it worse but since my sergery eyes have gotten little worse it feels like heat is comeing out of them and hard to focus vision blurry but anyway i wont put any ice or any kind of cold on me
I am 41 I had my mortons neuroma removed December 30th 2009, it was between my second and third toe, they went in through the top of my foot. I could have probably gotten nerve blocks started much sooner but my podiatrist, just kept joking and laughing when I would tell him the symptoms I was having, and telling me everything is normal. When he told me the pain is just something I would have to work through, and instead of trying to figure out why I couldnt move my big toe and was still in so much pain he just made jokes, I went to a different doc, who said no none of it was normal and sent me to a neuro and an orthopedic surgeon, who dx me with the RSD.
yea i saw on the internet that most docs sayits all in our head but im very lucky i had a good doc but it took him only a weel tofigure it out he was so worried he called almost evry day checking on me and even opened his office on sunday i was so blessed i never had a doc like him but he sent me to a specialist and he still checks on me and i still go see him once a week wow today my toes and feet feels like they are going to just explode i hurt more at night and just gets to me my poor mom thinks im going to give up but she doesnt realize im a strong person i been threw alot in my life im fighter and im so glad that i have met you on here you give me more faith in things and i hope im not complaing to much it just i never experianced pain like this i have suffered alot with my ulcerative colotis but rsd pain is the worst pain and at times its hard to deal with but anyway thank you so much for being there for me and im hopeing that will still can chat together also i hope i have helped you some god bless and you be pain free
Hi Eliza, My daughter is 18 and she read an article on the web somewhere that a very high percentage of people with RSD commit suicide, and she is freaked out. My friends all call her the little mother now, she goes to my doc apts with me, If a friend takes me to the store she calls every 20 minutes if I am having a bad flare and in bed, she is right there next to me its nice to know she cares but I hate that she worries so. she is only 18 and should be having fun with friends and boyfriends and all not becomming a mother hen!
Yes it is nice to be able to help someone new along. This disease takes away so much of who you used to be and what you used to be able to do that it really makes me feel good to be there for other people and to know other people really get me and know first hand how I am feeling.
I think it keeps me from feeling totally useless and less like a burden. Hope you get some pain free nights (nights are the worst)
kelly
hello kelly, you are lucky i have 2 daughters and a husband i know my girls have there own lives but i dont ever hear much from them and my husband he is here but i dont think he understands much he says i changed so much after my surgery cuz i was always active and happy but now he says im so quite for my daughters i use to talk to them everyday now i havent heard from them in almost 2 wks that hurts my heart they dont even call to check on me i feel so alone thats why im grateful to be talking to you i feel like im getting on my husband nerves he realy doesnt pay much attention to me anymore it feels like it anyway yea nights are realy hard i been running fever today it makes me feel worse doc says its one of the symptoms anyway i hope you have a painfree night sleep well oh if you ever feeling down text me on here im always checking my messages ok god bless you
Hi I am sorry for your struggles but can relate. I am not new to rsd though since it has been about 5 years. I have just skimmed the other responses so sorry if I missed something.
I can relate to lack of sleep. I sleep 0 at night and so if I do it is nap during the day. I have tried many meds for sleep,anxiety etc and nothing helps. The pain and anxiety is very bad at night. I hope that when I find better pain treatment it will also help with the sleep and anxiety. I also have severe eye problems and have been to around 10 specialists 50 eye apts,neurologist I could go on. I also have dry eye but they feel I may have RSD in my eyes now. My RSD in my legs. You said you have a good doctor and does he deal with RSD? I also am wondering if you have been checked for auto immune conditions? If not I would see a rheumatologist. I have RSD but for ex also have PN and I feel an undx auto immune but who knows.
In terms of support I am so thankful for my mom who is my strength and hope. The rest of my family though is not and I have few friends. There are support groups in person you may want to look up for you and your husband. I know that our condition does impact the whole family so everyone needs to learn to cope so to speak.
I also agree that forums like this and the people I have met are so helpful. You feel less alone and helps to fight
hello thank you for your reply yes i have lots of problems sleeping at night due to the pain hurting more and i have eye dry syndrome but it seems my eyes have gotten worse last night it seems i felt worst i felt like i had the worst flu ever all at once i felt i went down hill fast i couldnt hardly move my whole body just hurt vrey sensative to touch i started crying and my poor husband back went out so we spent the night in pain but we held each other most of the night he told me i kind of know how you but it seems it just brought us closer together
