Hello my dear,
I'm Jesika ,please forget my mistakes ,my hand had been affected lately from my rsd spreading and gosh can't finally said, in tired of this !
I do have an spina cord stimulator ,boston scientific ,during my trial period ,that was for one week ,I was for the first time in my dificult and miserable life know what being living in hell was seven days without sleep,not being able to sit or rest do to the pain caused by the wires connected in my back I had the trial for lumbar area to treat my foot and ankle right side ,problem was ,I sleep inn the right side and also get up same side and the fiirst day the tape and wire was giving me some pain,called the dr and tell him,he said was normal ,so I keep going, next day ,well I will said following becasue I couldn't sleep at all,I was looking a way of how to sleep and I figures a recliner will be beneficial but I couldn't afford it so I made one by putting pillows and stepper on a computer reclining chair ,was ugly but help me at lest to be able to sit with less discomfort.
Following days ,I felt some relief finally on my foot ,but my back was having serious issues , I got allergic reaction to the plastic tape he dr use to seal the stimulator and also reacted badly to the iodine,was having sever hives in my whole body and serious blaster on my surgical sites,he told me to take Benadryl and apply also cream and still keep going ,I did.
By day 5, I was prescribed since the begging norco 5/325 low dosage for extreme pain,I normally don't take pain meds and also I'm allergic to them,got cosmtipation for five days and nausea. Called the dr and he told me to get some ducusate sodium tabs or suppositories and stop the NorCo ,keep taking Benadryl and more cream, well was like that ,severe constipation ,I never been so in hell and unable to ask anyone to help me becasue ,what can anyone do to,help you, I was desperate ,constipated for five days ,my period got suddenly stoped and got some much allergy,I really can't tell if the scs was really totally beneficial when I was dealing with so much.
Finally the day to remove came ,they pulled the tape and pealed my skin to the point I was bleadimg with blisters and dr told me ,just add Benadryl for I itching and neosporin for the bleadiing blister , my relief with the scs was ok but the whole trial was not a great experienced at all.i have to say, I don't know I was so unfortunate to be allergyc to surgical tape,iodine,hydocodone,and the relief I feel was good on my foot but honesty ,Imwasmt sure at all if the relief was enough due to all the side affects a developed .was not my best week ever,and was closing Christmas days in 12 , 12-12-12". Someone told me not to do it but my body can't longer wokeed as I used to,I tried everything dr put In my way,and nothing worked,so I decided ,yes it was ok go to the same trauma and get the permanent this time I knew what happens and wll know how to handle .
I got the permanent unit jan 21-13, I had different tape ,I had diferent pain drugs ,I kept my chair and a week later he wll check my incisions ,I was afraid of then to pull my tape again the way the did and got more blister ,so I asked my husband to help me to loses the tape , I was so surprise when he told me my stiches look ok,so,I ask the one next to my spine should be two and he said no they are six and the one on the buctoks are seven , I asked to give me a mirow ,I was told something dofernt ,I saw them and I almost fainted. I almost passed , I saw the stiches and realize ,this is what my life will be,and suffer a terrible panic attack and cried sitting on the corner of my bed thinking,with this ,I won't be able to work I was devastedted but the scs was working ,but me want ready for all that stress .
Next day the dr official checked me and the rep was there as well making sure my battery and signal were good,and it was, it was working ,my foot was hurting little less
Around march I went to psyiclcla teraphy and did goog,was finally able to walk without an ankle brace that I used for one year and regain some movement ,but something was off,my back was hurting and my buttock ,you all my recalled I poste the story about my buttock hurting so much for almost a year and dr tel me wasn't the surgery ,I asked for rx or scan and see what was wrong ,he sent me to,work by April and I cloudnt work,I wasn't able to stand more than and hour so they company sent me back ,dr put me under medical,leave o ttd, my buttocks created back and leg pain,my good leg was hurting so bad ,he said as lo as the trigger area the right food gets control I will be fine,so he did some reprograming and was getting some relief on my foot but my buttocks got me crazy.
Almost a year after complaingj and my primary dr order to recheck my device ,he agreed on ask the wc authorization to repositioned on my abdomen,that happened on jan 20-14 almost a year later,I came a week later to remove the stiches and asked what was wrong meh said nothing just some body fluid and ,left I didn't see him after that ,I have new dr who stared to deal with my case his colleagues who told me, you had the battery for so long ,the fluid trap inside plus the tissue already form causes you to have you sciatic nerve damage and possible ,you rsd was already on your leg while the surgey happens ,sorry we need to ask the Ins to do and scan and see what is damage ,three doctors told me same thing , but the scs was helping me to walk again,not normal but again,I was able to wear tennis shoes after almost two years ,dr decoded no more custom made ankle brace but some custom made inserts and will be ok.well I got more pain now on my goog leg, my abdomen site was better positioned ,is being now nine months ,hurts still because a month after my repsoitong I had to have an emergency surgery to remove my gallbladder ,so ii had another surgey a month after but the dr who did my gallbladder took good care of me also the anesthesiologist ,they new about rsd,they gave enough meds to control pain at least for a week ,take good care of me before and after ,my incisions hurt when rsd flares ,all of them,my old inscision on buttocks is still triggering more and severe pain and is swollen more,literally my butt hurt and I can't stay sit for longer than 30 minutes ,is real uncomfortable ,
The. I asked if finally with scs my bone pain will be gone,and I got the surprise of my entire life ,I was told ,scs doesn't cover bone pain , I never knew that fact,I had bone to bone rubbing ,when back to use ankle Brace,approve to see an rsd specialist who will comfort my rsd was spreading all this time ,I do walk thanks to the scs but I walk with special shoe inserts and anklle Brace, I patch of lidoderm or flechtor ,or tramadol or meloxicam,I don't take by my own option pain drugs controls ,not now ,will be until I can no longer handle,this pain .
I don't sleep ,I got anxiety ,insomnia , panic attacks , my scs did work but not for the purpose I was told, now it's been programmed to cover also part of my left leg and dr comsider I need one also for my upper limbs and neck, my rsd on my right foot and osteosporis I develop is stable according to my dr but he his afraid to develop osteoarthritis , I think my knees are already suffering from something. I felt twice this past days ,I get so desperate and one day I had enough ,I was going to the restroom and I got mad because I got terminate from my job ,I was sitting on the toilet top just thinking what will be my next step ,all I saw was my ankle brace and shoes and I got so sad and mad ,I tossed them outside the barroom ,my husband was standing at the door looking,I wanted to toss everything that reminds me ,I have rsd , and I cried like I never remember I ever cried in my life , I was getting finally frustrating about all this ,I who always believe in the next big thing will come ,give up and get finally all the cry I holded for years , my family was there suffering with me ,saw me crying like a baby and that what it,I get up ,grap the phone and demanded the dr to order and rsd specialist which was approve but there is no one on my are .
I got new pmp and new ortho after the ins disagree with the old dr about my conditions they all got suddenly not longer part of their network,but I know the truth,my rsd was spreading on stage 3.
Scs did work ,I'm walking but rsd took my job,I'm 39 and recently declared disabled in court ,40 % and company Agee even though they dint want to !to pay for my medical expenses for life and rehab to get another job!approved my other scs which I will get next year !if pain let me ,I want to rest and have my family happy in November when I will be turning 40 , rsd is the worst I ever encounter ,my life before was sad in some yrs but got worse work rsd.
Rsd can be control with scs but you have to be real demanding with your dr , I'm happy having the stimulator battery on my abdomen work Bette but the damege done is there , if you feel something is wrong don't let the dr tell you nothing is wrong becasue it is.
Scs gave me some freedom,I can walk ,I don't drive ,I'm scare ,I need to turn turn device off and right away I feel pain but it work, I regret that no one tell me the bone will never be relief by the scs just the rsd symtopsn, I wil never have a bone fusion due to rsd , I will get more scs , if ketamine or calmare will offer first ,I'm willing to try that first ,if not scs will be again my relief ,know I understand the difference on reliving bone and nerve pain,was totally different,if I knew I won't get bone relif ,I woulnt do it at all, work in the rsd but not my buen pain and I will have bone pain for the rest of my life and also the risk to develop osteoarthritis ,my butt hurt.
I do not saying is bad , is bad what the dr did , even when I was very bossy and demanding I got hurt.
Scs work,I won't remove my becasue I can walk again,I'm hurt because I was missed Informe and also the dr lied to me and left me because he went Into medical leave ,glad that happens so his three colleges open my eyes and tell me the truth and even get me a referral for rsd specilsist.
I got hurt ,maybe in My case the psorioning wasn't the right place or like the dr said ,they sure rsd was already there and get worse with the surgery another dr told me,if I'm flaring,never for shots or surgeries to avoid further complications .
Scs do work, do relif at least 50 % but for me to be accepted to work !I needed to be able to vent !to do suddenly tiwistings, reaching shelves !carry heavy boxes !scs don't allow you to do that any more. And AME decide to declare me 29% disable and not able to carry more the 10 pound combine in a day, no vending ,kneeing,reaching ,pulling ,suddenly twistings and no standing or walking at all!siting only and no using ladders or stair to avoid risk to hurt my foot already with ostheoporosis !my company terminate me in June 2014, but I was realized to work May 2013 and my manager told me lies to avoiding have me there,since than I still had not got paid or even HR being notified of their decision,no one know ,so I'm looking on my leagal rights now .
I tolld the whole story because at the end I got good result for my rsd , many other people got better luck,i didn't , but I tell eveytihgh I remember to all who wants to get scs can also learn,many time things don't go well at the beginning or in certain point,my intention is not terrorisce anyone but just tell you things happens and you will over come,is hard ,you cry but is normal for us.
I don't regret to have scs ,I even will get more cables to cover more my left good leg knot good anymore ,and one for my upper limbs ,but I do regret not being told ,my foot and ankle will never recover ,I will never wear my shoes or being the fancy woman I was ,marchig shoes ,high heals and pretty dresses ,nice purses ,I hate them now ,everything is in boxes ,but scs do work ,but doesn't work in a broken heart .
Try ,take a chance you will get some of your life back ,not all,I'm honest ,it does work,with the right dr ,rep and settings but took a long way for me to get here,a painful way,I'm nit telling you don't do it,I'm telling you try,my story is here for you all to learn,if something feels off ,is off ,fight for your rights ,I trusted my dr was my mistake,but I will get more scs knowing that I really need to stop the spreading ,and will work for that purpose ,is a long story,sorry but please learn from my mistakes and also know when a dr is nit right and don't trust them, I wasn't right ,I joke a lot about having rsd and is a pain in the butt ,literall, I don't mind if some joke about it ,to this point is even funny.
Learn a lot from everyone ,we all had dofernt stories ,I don't know how to said my was , what I know is scs let me walk again,but the price I paid was high,I got no job,and that job was my,life ,my dreams where there ,I know one day I will get over ,nit know ,I'm mourning my losses ,and still can't recover.
Yes ,scs works try if you feel like you are ready,but listen to the signs ,if something feel off ,again I'm telling you is off.
Good luck moosey2me, I don't. Want you to,lose the chance to recover part or your life but learn the good and bad ,not all in bad,trust me,and if you want pictures of my journey,pm your email,I wil gladly send you many,scs trail and surgeries , please just let me know.
Gentle hugs to all, and hope this help someone who might be suffering withiutn knowmg was wrong,with love ,jesika.
Ps. I learned with all this ,pain is also a teacher ,I also learned to many times pretend I'm ok and I'm a professional on faking smiles .

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Thanks for sharing with me..I guess to be honest I feel like I am feeling sorry for my-self,at this point and I need to stop..I am usually happy go lucky..Right now I am pretending I am..The pain overwhelms me sometimes.I feel like how do I cope through these rough days????I should tell you alittle of was I have been going through..Mostly stress..I had to get new insurance was the first nightmare,which left me with doctor bills from old pain management.Stress...
Finally get a new doctor,and felt like I had started all over again...Stress...put me on a waiting list just for trial...well that did not go over well..See I was all set for trial in Dec..with old doc but then Insurance changes left me without Doctor or hospital...They denied me coverage...So that's what started this nightmare..But I kept my faith that God was watching out for me.Well a lot of fighting I finially had the trial...I was reactions to tape too..I already knew I had reactions to iodine..so that was a good thing.The trial actually went well.I guess I knew what was going on at that point..It was hard sleeping and adjustments..Then another waiting list for surgery..I was in so much pain while waiting.Had to up meds.I kept praying for something to change.While waiting A new stress..My son and his wife were having twins...GREAT NEWS...BUT,,his wife does not like me.I belief its because I remarried..The twins were going to have split grandparents...and your point right !!!!The thing about stress makes RSD a lot worse.My heart is so broken because now I cannot see the Twins..My son and I were fine,she did not like that..so I was not aloud to know when she was due,the hospital she was going to,and the day they were born I was called 3 hours later..I was invited on the 3rd day..I saw them,which I was so happy.my grandson was in ICU.my granddaughter was doing well.My grandson was low sugar and had to be watched.I was told the mother of the wife and family were all there for days..Long story short stress is not well for me.I really try to deal with this..Never got to hold them.i have tried to reach out to them but they will not let me.I was told if I do they will have me arrested..They got mad at me for pretecting my other sons feelings..Because during all this with me I treated him the same way..Momma bear got really mad so I told them about that..So I am the bad person..So long story short,I am thinking this why I do not feel well. stress can you us up..I am so tired of pretending I am okay..I just want to scream..I feel that my stimulator helps some but I feel my biggest issue is stress..My heart is so broken that it makes it hard to deal with every day issues.I have the stimulator hitting the right stops,its just not enough..During the fourth week I tore the lines in my back by beading over not thinking and fell over backwards.I had to be checked out and readjusted...Had to go back again later for another adjustment..i still feel the locations are right,but with all this stress its holding my progress back..I just told my husband I could care a less if I ever get out of bed again..I am that depressed..I would be happier here laying here than going camping on Friday..During my charging I leave it on most of the time..Once I did not and had to stop charging and turn it back on..Sorry if I went over the top with my problems,but I think that is what is holding me back on healing..Mentally and phsyically ..but then again its just hard getting used to having this in you knowing its going to always be there..Extra steps to getting ready to do things,,shower,driving or even laying down.. Still taking meds..and sometimes I have to bump back up ..Its just hard working too.oh ya do you guys feel cold a lot too?i have to wear socks sometimes in bed..hate that..lol..I guess it was going to be this big greatest thing and it was a let down when I still feel like crap..but like my hubby says,we need to move forward and deside if we should move ahead with grandparents rights or try to wait out the storm,meaning my son wake up and see she is pushing all of his family away..Me,my other son and his wife,and my Aunt and Uncle..He has changed so much..Well I guess enough said..sorry for spilling it all out,but it felt good to share..Thank you all...

Is understandable ,stress will be always our number one enemy.l
Sorry about how things turn with your son, few years ago I was trap as well on the family unfinished business ,my husband had and older son ,31 now with three girls, bad thing ,his ex, she was the whole time getting between me and the relationship I built with his son,after all ,they' were never married lived together only two months and obviously kids pay the price . Well my step son was moving from house back and forward , nothing beneficial,his mom get in the way every time he left ,finally around his 17 birthday I found our he was bringing girls to house which I didn't like at all and let him and his father know obviously he didn't care and dad was mostly,not having an opinion against his son got me to the point of telling them both ,no girls at home or his gone for good ,so he dare to tell me I couldn't tell him anything because I wasn't his mother and he don't even let his mother get into his life less likely me,so I told him if that the case call your mom and leave now,he did called and she showed in less then 10 min, and took him ,and told my husband ,why kind of dad he was that didn't stood up for his child. Child ,he was a me not a little child! Well she took him and a week later they had problem and he came back without me knowing so I get mad , and he was not his room ,I opened the door and told him you will stay here one if you go to school and don't bring girls here this is not your mom house ,you better better and sure I'm not your mom unfortunately for you ,other wise you wouldn't be like this ,so next thing you do,your out.
So he was in school pretending to do go ,sneaking a girl while I was at work and I found out about it and give him an ultimatum ,the streets to the house I wasn't playing ,and he said the house ,he show up one Sunday around 2 pm to introduce his girlfriend , this was months later ,she look ok but dressed to me to modern to come from church but indeed they were coming from church,the stayed few hours and sharing time with grandma and me ,she even like the bible,I know religion here is limit to to talk I won't go far than this and she seems nice, he let us know every time they will visit and was fine,one day they decided to get married ,a year later ,and sure you can imagine the mom getting involve in everything she didn't like the girl because their families where living in an area where they don't get alone,so they paid the priced,mom was annoying and even almost stop he weeding but they made it .almost five months after get married she got pregnant and that was the start of few miserable months and even when the baby came she was acting so bad she even want to be inside the girls room to see her grandchild born, which is a no unless the mother agreed but she dint want her at all,both get into each other there and my stepson wife blamed me , I dint know why until I found out my now daughter in law told them while In delivery if she will stay in that case call Jesika and she can be here also ,I rather had her than you. Well that get me for few years into my ex eye,I was blame for every single problem they had,they almost got divorced and she was coming at my house every time hey fight ,I wouldn't let a mother and a child in the streets, so every time she came I talked to her and convince to get marriage advice at church,he dint want it,because his mom told him she can help him with a baby and. Take he baby away from her ,he tried to do it,with no reason so finally his dad step in and talk like the dad and men he should be with his son,and told him decide , his support and be with his family and forget about his support because he will support his wife,he better stoped listening to his mom and finally be a men ,he didn't like it but he did stoped and let things cool off, they decided to try with therapy and get well deciding no outsiders will get involved. Cut for a while,communication with his mom , was sad because I'm a mother too , told me he knew I was right but also he loved his mom ,but his mom was wrong and he hated that she dint like me and he was sorry. I told him it was ok,now he was a men and a men will look for his mom and forgive her ,but never hurt others to please her way,and he did ,he changed.
He became a good parent ,three girls now, happily married and getting better for his family,he called me mom as well ,somehow his to two,older girl without no one telling them out no where called me grandma ,I'm grandma his mom is nana and his mother in law is granny, I'm the grand ma, she ,his mom now talks to me in a decent way after years of we ignoring each other ,I never ignored the girls mom,they were always nice ,but my son moms get sick last year,fibromyalgia and get real bad, I heard and his son told me to call her and try to help her since I was suffering of sever pain I will understand her ,so it took so much if me to call but I did,she was polite and explained me what she had and felt and we had for first time after 22 years a decent talk there after when we see each other she salute me with a hug and kiss both when we felt hugs are ok,but pain manyntimes get into our ways,recently she was hospitalized with kidney stones and she called me to be with her,is so rare how life change.i know is hard for you know to see the real future be patient future will be good , my oldest granddaughter is 6 years old , I never missed any if the girls due date or birthdays ,or baby showers ,or Christmas , be patient your son will come to realized family is all you have and she will also understand that ,it doesn't matter if you get remarried , love and family will bring sense ,be patient and let stress get away from your mind the best you can ,your grandchildren will reunite the family ,you will seem,be patient and get that device working and ignoring outside stress ,will hurt for a while but soon things will change ,common sense get to people's head and your son will always love you and will get things right ,life in manyntimes is so weird , I don't have my own grandchild yet,my daughter don't even thing on dating school is her only focus ,I think I mentioned her before 21 years old ,microbiologist mayoring and graduating fall 2015 , and decided to do and under or post grade ,I don't see kids to be Honest in her plans but is ok,my steps son gave me the opportunity tho have three grand daughters and have them and when they are few weeks old I was able to carried them because rsd don't let me anymore ,I can play with them or run ,but is fine ,they are there no matter what ,you will have same opportunity soon,be faithful and hope always the best ,the future is not written yet ,do your best on being patient and wait,don't think about anything else For now ,is hard I know stress should left your mind,and hope and faith be your companions ,be patients better days are always come ,sorry about my long story as well,but life is what it is ,gave us what we don't ask and also finally gave us what we need , you will get there .
Blessing and soft gentle hugs ,with love Jesika .
Ps anytime you feel like talking and we can help even others more by being ok.

Thank you so much for sharing your journey..Very interesting how things end up..I hope and pray for the best.Its just hard waiting.My heart aches so much.I try to bury it,but that's only for a while,then I feel the pressure build,and I want to scream..THe rsd and stress get the best of me..It so hard for other people to ubderstand dealing with all this pain and burning skin.I know to that we are not to talk about god,but I am glad He is in this with me..Its been almost a month,I am trying to hold in there..I am missing so much of there lives.Its so unfair..Thank you again you are the best..I am here for you to..Best wishes..

Hope things are much better by now.
Remember ,stress is the worse enemy of rsd and you need in some way to let other emotions out for you own good. I been flaring for months now due to stress and gets everyday worse and worse,my scs can't do all ,and honestly ,I'm tired of this but I have to keep trying ,same way you have to try.
Don't let disappointment gets you,all will come back to he place where belongs, sit down,have faith and hope,you will see.
Keep always your rsd emergency kit handy, mine include , gelato,hot warming pads,a small soft blanket,a memory foam little pillow for my head and avoid headaches,miso soups, coconut water, long soft and lose sock to cover my leg at least half way, music to relax my mind,Josh Groban and tibetan singing bowls works for me, yoga,light yoga for me due to scs and ostheoporosis on my right for and ankle, lactose free ice sticks flavored, rest time,meditation,and a place where to rest ,we all have different ways to manage flare ups, also keep your meds handy ,but look for things that give you joy and happiness ,you will get the rest eventually be patient and just wait,it will come soon.
just wanted to tell you ,I keep my prayers for you and hope a common sense get to the mind to those who for some reason are loss,from the way ,don't want to hurt you by saying manes ,but I'm sure sense will come to their way ,just keep the faith and hope always in your emergency rsd kit.
I send you ,warm gentle loving hugs and wish soon your eyes get the gift you are waiting and deserve, new life and hope for the future days .with love Jesika .

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