New to the board tonight
 

Hi all,
Ive decided to jump right in.
I'm so lonely lately. I just got so fed up going through the revolving door of doctor;s, nurses, PT's, OT's...new meds...blah, blah, blah.
I have MS, RSD and fibromyalgia.
Whenever I am prodded to try to explain the pain and symptoms of the diseases- is that what they are?- I am met with blank stares and then a change of the subject.I feel isolated and lonely.
I decided for next week to escape the routine of appointments and actually do some normal, mundane, happy things like go shopping and out to lunch.
I have been "immersed in battle" for weeks and it doesn't seem to go anywhere or make sense. This seems to be the only thing that does right now. I'm looking forward to this week now and am also looking forward to meeting others on this board who might actually know how I am feeling- emotionally and physically. I found this website when I was researching various treatments for RSD.
I really don't know what I am doing as far as navigating these boards so I am going to rummage around and see if I can make some sense of it all.

Welcome to NeuroTalk. Great to see you have come to be with our loving group. There are a number of friends will to assist as we can. Just let us know how we can be of any help. We are all here to assist each other as possible.

Here are some links for you to check into:

http://neurotalk.psychcentral.com/forum21.html

http://neurotalk.psychcentral.com/forum21.html

http://neurotalk.psychcentral.com/forum12.html

Again welcome, looking forward to seeing you around.

Darlene:hug:

Welcome to NT!

There are lots of folks here who understand exactly what you're talking about. In addition to offering sympathetic ears, many of them are very knowledgeable and will be able to give you practical advice about managing your conditions and dealing effectively with the clinicians who are supposed to be treating you. People here know it's a hard battle: they will cry with you, they will laugh with you - but they won't let you give up.

That said, I don't think it's necessarily bad to take very short, mini breaks. Like you, everyday of my calendar is filled with various therapy and doctor appointments. Inevitably, I do, on occasion, yearn for uninterrupted days to myself to do normal things like go on a family picnic or invite friends over for morning coffee or just not be poked and prodded by strangers in white coats.

When I feel overwhelmed by those feelings, I cancel my appointments for a few days and just enjoy the freedom. My clinicians don't mind as I continue my therapy regime at home, respect my limitations and take my meds. In fact, I'm two years out from my accident and my PT doesn't think I'd have stuck with treatment so long if I didn't give myself these little mental health breaks. As I said, they only last a few days and I always go back refreshed and ready to resume the fight.

Enjoy exploring the forum and if you need help navigating, just ask. (Although you might want to ask somebody more tech savy then me. Don't get me wrong, I'd be more than happy to give it my best shot - but heaven knows where we'd end up!)

Cheers

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Hi bfzeck, and welcome to NT! This is such a great place, with many nice, friendly, and caring people.

We're so glad you found us! :)

I also have MS, and I hope to see you over on that forum and at The Stumble Inn.

This place is huge, but before long you'll be settled into your different forums. If you do need help navigating, please feel free to PM me.

I am somewhat new to this site. I have posted a couple times, but failed to introduce myself. I have been fighting the effects of Fibromyalgia, CFS and chronic daily headaches since 2003. In March of that yr I had what seemed to be a everyday virus (fever, bodyaches). Achiness continued so doc began series of tests. Only thing that showed was fairly high SED rate. Thus began my journey of doctor after doctor, test after test and medication after medication. I don't work any longer. There is no way I could be a productive employee. I have been poked and prodded and tested so many times for so many things I don't even remember what they were for. I was drawn to this site because of what I have recently been going thru. I was put on CYMBALTA about 3 yrs ago for my pain from fibro. It seemed to help, but I was left with extreme (I mean very extreme) hot flashed and sweating. Lived with it until Aug. when my doc thought I might do better on SAVELLA. He weaned me off of 120mg of Cymbalta over a 3 week period. Two days after my last dose, I began what I now know to be withdrawals. I began to have Brain Zaps almost constantly. They have been the worst thing I've ever experienced. very debilitating. Also, extreme body aches, deep ache in chest, diarreha, dizzy, light headed, very unstable on feet, nausea, foggy drugged feeling in head, unable to speak or write normal (like my brain wasn't keeping up with body & thoughts), shakey/jittery, and emotional uncontrolable crying.
This is my 3rd week off (last dose 9/18/09). Just beginng to feel somewhat better. Still not able to venture out too far. What I have found is that my doctor, along with many,many others are not made aware of these potentially severe withdrawals. Drug Co & their Reps downplay withdrawal and no protcol given to docs for tapering. My doc thought he was doing right thing. I felt alone with what I was going thru until I found several websites that indicated cymbalta withdrawal is very prevalent, almost common.
Anyway, that is a brief synopsis of me. Thanks for listening
Asti

Welcome to you both on this thread.

You both will fit right in. There's lots of info here.

Ask if you need to know where to find something. We're here to help if we can.

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Welcome to NT. You will find alot of wonderful people and loads of information.

This is a great place to be because so many of us understand what you are going through.

Glad you found us:hug:

thank you
 

I really didn't know how to go about returning to the board to see if I have any replies. But in my email this morning I found an email with replies. Is that how it is done?

I really appreciate your words of support and know that it is ok to take a mini vacation but feel guilty and feel that I am relenting in my battle, even though I know that it is not so. I hate to use the word, depressed, as in a few days, I always hope to be me again. I retreat when there are just too many comittments and tasks to tackle.
My brain sometimes turns to mush and I can't handle it on top of dealing with the pain and unpredictable symptoms. I am lookinf forward to getting to know people here and finding out ways to help.

welcome to NT you 2,

i wouldn't feel guilty about taking a break. to me it means you're taking care of you and that takes courage. you are your own best advocate. taking a break may help you think and gain a different perspective.

you're never alone when you're here. we have all walked the path before you.
that way we can hopefully be of help to others.

looking forward to more of your posts.

Welcome and hello.

I know what you are talking about. Days filled with drs appts and pt and
pain just get old really fast. I too was given a rsd diagnosis a couple
of weeks ago(along with a few others) and I still havent processed it
all yet.:o

Lunch with a friend sound like a good idea;.

We are here if you need us.

:)