NeuroTalk Support Groups - Please say it isn't so!!

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Please say it isn't so!! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/44325-please-isnt.html)

Hello again! My doctor wanted me to go in there and have the SCS(Spinal cord stimulator) put in.(This was my old doc). Well, my new doc. told me to hang in there, he will let me know what's what. I also told him I'm scared of having that done. well, I guess I will read about it some more, I asked a lot of friends on here who had the SCS put in and some liked, loved, hated it. So, we shall see. I also think that I should talk to a real good RSD Dr. up in Cleveland, as I heard there are some who can talk to me about where I'm at right now with this beast of a disease. I live only 45 min. away, As I live in Ohio. Gina, are you taking anything for the pain that your in?? If you are and it is not helping, ask for a stronger pain med. Thanks for writing me back, I can be such a baby LOL You hang in there too, Gina!~Love, Desi

Hi. First if I don't respond again it is because I am moving back to Ca and won't have a computer. Not being rude. First you are not a baby. I do understand though cause sometimes with my mom I know I act like one. I think being in pain and so much unknown can do that to a person. It is like we just want comfort. Yea I have been on so many meds with no relief. It is like my brain does not process. I used to live in MI and why I went to the CC. I made it through 4 days of the day program and then thought I would die in pain so I saw the anastesolgist at CC who wanted to do the catheter. Then went to ucla who wanted to do the scs. All the different approaches and different opinions make things even more confusing. You hang in there too.

Oh Desi, I really feel for you. Having been to all kinds of docs and having all kinds of tests done for my legs and nothing significant found that would cause the pain & swelling for me, I do hope that they can find something that can be treated. (I know that sounds bad that I hope they find something but I mean I hope they find something that they can fixed versus it being RSD) It was very difficult for me to accept the RSD diagnosis (I guess I was in denial) & my PM kept sending me to specialists. I don't think my swelling is nearly as bad as yours is. Personally, I won't consider the SCS & my PM doesn't even bring it up anymore. Don't know whether it's because I'm scared, in denial or still hope that something else less invasive will come up. I did start the fenzian treatments Monday. I have hope with that.
Please keep us informed as to what the test results are.
Hugs & prayers,
Linmarie
:hug:

Hey there Linmarie!! Ok I just got a phone call and all my ex-rays are good!! I don't know about the blood tests?? My doc. will most likely go over them when I go and see him Minday, May the 12th. I received a call this afternoon and the same specialist who did my ultrasound of my leg, wants me to have an MRI where I have to drink this stuff (I can bring it home) then in 2 hrs. go and get this MRI of my stomache and pelvis. I missed this app. the other day, I was just too dang depressed to get out of my bed. So I am having this done May 9th. (Right on my daughter's 8 th. Birthday, but we are celebrating it, the way she wants to this yr. none other than, "Chuckie Cheese", then the children will come back here for cake and icecream. I pray to God I feel better that day, even if I'm not, I will put on my biggest smile, my support hose(Jeans on of course.. LOL) and have fun. This is what their starting to do with me,too Linmarie, send me to doc's, specialists, when we know or some of us do, it's the damn RSD!!! I pray yours is not and mine too!! I have had enough, bet you have too!! This sucks big time!! I am so depressed right now, that I am getting ready to crawl back in bed. My husband, Bill, has our daughter out eating. I told him to get me some salad, fish and a few boiled potatos.I know that RSD causes us all depression, and that we should be, but I try to dig my way out. I mean, they already have me on enough meds. Pain killers, neuronton 600 mg three times a day.. add tht up! ughhhhhhhhh!! effexorxr(For the depression) clonodine(high blood pressure (Klonopin, for anxiety and muscle pain) xanax for panic attacks, and ativan to sleep. I am also on the fentanyl 75MCG/HR, it's a pain patch that I wear every 3 days, then again every three days and so on. A couple of times I forgot to change it(I was wondering why, I was having so much pain.. LOL. I also take either tylenol#3 for the break through pain, or tramadol. I wish you all the best Linmarie. Oh, by the way, sweetie, what is Fenzian?? ((Hugs)) and prayers right back at you!!~Love, Desi :0)

Desi,

I am sad that your are feeling so down at the moment but knowing you I am sure you will bounce back.
It really does become overwhelming and everyone just has to excuse us from these times where being in bed hiding under the covers seems the right thing to do.:(
It is called self preservation
Glad you have ppl that love you around to get you through this.

ps-Good news about the x-rays

love as always
Tayla:hug:

Oh Tayla!! Sweetie, your the "BEST"!! I really needed to hear this, I thought I was the only one hiding under the covers, wanting to be in bed! Yes, I will bounce back again, like a rubber ball!! HA! HA! HA! I just love you so!! Your such a great friend, that I want to have a "spot of tea with"! :) Thank you!! Thank you!! ~Love ya!! Desi

Quote:

Originally Posted by Linmarie (Post 269985)

Linmarie:

I am desparately trying to find a Fenzian practitioner for my niece who lives in Michigan. Not having a lot of success googling online to find them. I pray that your treatments are going well.

How did you find out about Fenzian? And please...if you know...how do I find Fenzian practitioners in Michigan (or other midwest states). Any guidance would be appreciated.

Miss Rebecca