[christine1003]

since my emergencyt surgery to remove my stimulator because of my spinalcord being infected i have been getting progressively worse so bad that i have a hard time going t the grocery store and standing in line which is weird because my rsd is in my right arm that spread to my cervical spine because of the 2 surgeries there. my whole spine is sore achy all the way down my legs into my feet and i get swollen alot also, well my pain management has a new PA amd he is really good actually better than the dr he is trying so hard to help me, my days are so bad that i dont even use my computer that often, well anyway i was told today that i have the rsd and now fibromyalgia and pretty much they are fighting for control of my body and i am tired of fighting i dont understand how this works how to help make it easier i am not physically able to do physical therapy i did buy a hottub and i use it at least 5 days a week and it is great but i feel so so all alone and in extreme pain i am on 100mg of lyrica 80 mg kadian(er morphine) 350 mg soma every 8 hours 7.5 percocdet every 4 hours 100mg zoloft lidocaine patches and i still get no relief any help or suggestions will be greatly appreciated i even have an appt at thr cleveland clinic on tuesday

thank you for listening and HELP PLEASE

[reruho]

Christine,
I was wondering about you, it has been a while since you last posted. I am sorry to here that they think you have Fibro too. But, I am happy that the new PA is helpful. I am seen by a PA and a doctor at my Pain clinic. I am very pleased with the care I receive from them.

Sorry to hear your spine has gone downhill. I often tell people you do not understand how interconnected your back is with everything, until you injury your back.

I don't do physical therapy anymore, either. Letting people manipulate my arm causes my pain to increase. I do not let people touch me. And, I tell my doctors they allowed to touch me if it is medically necessary. I did do Tai Chi for a while and it helped. You might try it. Check with the local hospitals or look for Tao Society.

A hottub sounds very heavenly and relaxing. I would never get my teenage son out of a hottub.

Reta

[christine1003]

hi Reta so nice to hear from you thanks for the response it seems like we are sort of in the same boat, the hottub is my best treatment actually and i just bought a house because i dont know what my future holds for me, my injury was caused by a nurses mistake so without really saying much i was able to buy a home and pay off my car i have worked like 6 months out ofd the past year and was just today approved for long term disability from my job but a condition is that they hire a company that gets you all set up with ssdi and i dont have to do a thing so that is extremely helpful to me.
i am going to the cleveland clinic tuesday my dr says now it is mandatory for me to have a breast reduction and i actually went to a consultation and was told my breasts are too big(can you imagine) anyway this surgeon says that he will have to remove the nipple and replace it and he was too worried about "maybe" losing some of the sensitivity in my nipples needless to say i was floored he could even say that it is medically nessacary and the niples are not my concern whats good is the cleveland clinic does them so we are driving 3 hours i have a neurology at 11 and breat clinic at 2
i forgot to mention since the infection i have developed a pocket of fluid 3 by 5 cm that no one can tell me what it is
you now my boyfriend and his son moved in and to be completely honest i have never felt so all alone in my life
well thank you for listening and i hope things get better for you!!!!

[reruho]

Christine,
Have the Neurologist send a list of precautions to the surgeon for your surgery, especially since it spread.

I just had gallbladder surgery and I had the PM send in a list of precautions. They were mainly, no trauma to the left arm and to keep it warm. I had a run-in with a nurse in pre-op when I asked for blankets. She tried telling me she had 4 other patients.... I cut her off and say that my pain will go through the roof if my arm gets cold. And that there was a letter from my PM in her file. I was very amazed but 2 very warm blankets appeared on my bed within a few seconds. I thanked her afterwards. The surgery went great and I am feeling so much better. It feels goods to be able to eat and to sleep.

My brother's first wife had breast reduction surgery when she was 16. I don't think she was more than 5 foot and was packing huge double Ds.

I am not sure how large your breasts are. I know that large breasts can really cause serious back problems and with your spine in the shape it is, maybe this is a good thing to have this surgey. I know this is a difficult topic for many women. Our breasts are a big part of our identity. I remember getting an endometrial ablation for heavy bleeding. I had it done in December and I was filled with guilt for ending my fertility, even though it was for my health. I didn't want any more children, but it was something I could do that my husband could not do. And, December is a month all about mothers and babies. Everywhere I went mothers and babies. I told my male GYN about it and told he needed to warn women about the emotion toil. He looked at me like I had 3 heads. Men don't get it the emotional attachment. Maybe if we talked about amputing their little Buddy, they might think about it more seriously. Sorry to go off on that diatribe, it is the emotional aspect that I feel men belittle and treat us like we are hysterical females.

Maybe the neurologist or surgeon at Cleveland clinic can tell you what that pocket of fluid is. I really hope they can.

Have you ever heard of a program called Dragon voice recognition? It transcribes the spoken word into printed word online the computer. I have heard of several people using it and loving it. I'll do somemore research on it for you.

I understand the loneliness. I have a house full of people and I often feel very alone. There are things that they can never understand.

Reta

[Bussey]

Hello Christine,

I'm sorry that you are still dealing with so many issues, after all you have already been through, since getting the SCS implanted and removed. Even though you have RSD in specific areas of your body, remember the central nervous system is connected to every part of our bodies, and as a result, there will be times when you have symptoms in areas of your body that are not, "affected by the RSD".

I have RSD in my right hand, my right arm and shoulder, my lower back, my chest on the right side, and my right leg. However, during flare ups, it feels as if my entire nervous system shutting down on me. My speech is even affected adversely! That could explain why you feel so terrible all over. Just adding my two cents.

Again, sorry you are going through so much, and hoping that you will feel better very soon! I'm very glad to hear that you have excellent doctors!

Take care.

Bussey

[christine1003]

the other day I cried for 5 hours straight i sort of know why and sort of dont like today for instand i went to kohls a shoe store and ross and all 3 stores were right next to each other i am trying so hard to fight this demon and not give up but i just got home and i can hardly move now i need to go to sleep its so bad, i dont know what to do anymore and i always azppreciate your 2 cents!!!!!

christine

[Bussey]

Hello again,

You have been through a lot, and you are still dealing with a lot, physically. I was wondering whether or not you have been having difficulty sleeping. It sounds like you are very depressed, and with good reason. I'm sure that you already know that depression and RSD, go hand-in-hand. Have any of your doctors given you anything for depression? If not, it sounds like you may need something.

Again, I hope you'll feel better soon. Hang in there! I like your fight and tenacity!

Take care.

Bussey

[christine1003]

yeah i am on 100mg of zoloft i take it at night but i have been on it for a while maybe it needs to be adjusted some i dont know i know that i have to make myself get up and go out to fight this or i could just stay in bed no problem but it is hard to do this like standing in a grocery line waiting to check out is hard for me but i have rsd in right arm but for some reason my legs have been so so bad lately they think i have fibromyalgia also this fight is so hard for me it hurts so bad i would like to lay in bed cause it does not hurt as much when i go to sleep
as far as the breast reduction i do have 44 dd some breas are ddd's and i know it will be easier on my back but like others with rsd i am afraid to have anyind of surgery because it seeems thr rsd attacks then like it did to my cervical spine
thanks

christine

[Bussey]

Hello Christine,

I feel really badly for you. It is as if you are between a rock and a hard place right now! When I have a really bad episode, movement is affected literally all over. I even have a problem opening my eyes, because my nervous system just seems like it's just not going to work. I told you about how it affects my speech. It gets to the point where I can't even feed myself for days. So, I know how the other parts of your body can definitely be adversely affected when you are having a flare up, or, when you are in pain.

I know that it is one thing to read about how RSD could possibly spread after surgery, but you know firsthand, that this definitely happens. You are living and walking proof of that. Again, I can most definitely understand your fear of having any type of surgery done, unless it is absolutely necessary! You have so much to contemplate.

Whatever you decide, you will definitely be in my prayers. Take care.

Bussey

[christine1003]

thank you so much for the prayers they are much appreciated my mom stays on my back aboutnot laying down and it letting it take over my body its just sometimes thats all i want to do but i guess she is right, once again thank you for the prayers the more the merrier!!!!!!