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Just a Hello. I am New to this board


hopeful-girl
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Hi. Well I have been over at the NRDF forum as a lurker for some time. I have just been trying to come out of my shell and join up with conversations and sharing and trying not to live in my head all alone ;-).

I just discovered this forum. Some how was missing this. Now I feel I have more of an extended home woo-hoo!!

Hmm a brief description of me.

I have POTS, Autonmic neuropathy, vestibular disorders, Gastro paresis, and I am on a je-junostomy feeding tube right now and have been since June. I throw up every day!

I have all the main POTS symptoms and have a very SERIOUS problem taking medicine. I am highly sensitive which has really complicated things for me and trying to get better.

I take xanax for my wiredness, anxiousness and shakiness. I get so wired i feel like i am on a bad speed trip WHEW I hate it!! I tell ya the xanax has done wonders for me. I try to be very cautious about taking it. Like today I have only taken 1mg 1x. But hey I think I rather be a little addicted than experince what I feel. I take oxycodone when needed for pain! Stomach and body. Does any one else here get the feeling that there bones hurt and feel like they are cutting threw your skin. EWWW I hate that feeling. I am very sensitive to pain. My Doctor says it is the Autonomic neuropathy part for that. I am also on prilosec 2x day. My new neurologist who is a cold jerk has prescribed me Florinef. I have been sitting on it for a month. I am SO scared to take it. I have been hospitalised over so many bad reactions to meds and each bad reaction I have affects my heart and blood pressuer and i feel like I am going to die. SO one of my biggest fears is medicine!!

OK so that is my story. I do have a tendancy to ramble and I do not mean too!! That part just

Oh hey I see there is another Corina here. Hi. You spell your name just the exact way I do ;-).

Night

Corina (hopeful-girl)

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Hi Corina! B) welcome!

Do you know what your body reacts to medicine wise?

Im scared of things too ... yet sometimes i think part of my reaction may be more anxiety than a actual reaction ... i fear a reaction so much that i think i may create one.

Florinef has helped me so much, i hope if you are able to tolerate it that it can help you.

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Heeyyyyy Corina!!!!

It's so nice to meet you!!! I'm another Corina, and eventhough I'm very hopeful too, I stopped staying inside laying and sitting and waiting for a miracle to get cured. I got myself all kind of things to be able to get out again (like a wheelchair and a scooter). Whenever I can I'm going outside to enjoy life!!!!

Well, I don't have much time now, as I have to eat, take meds and rest, but I couldn't resist answering a fellow Corina! By the way, are you from Europe too? (as I noticed you posted at a kind of European time!!!). Best wishes and welcome aboard, and hope to talk to you again,

Corina (sorry I don't have another name) B)

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Welcome Corina, you hopeful girl, you :wub:

You'll have a great time on this site, meeting some awesome people. I haven't logged on in quite some time, but I still think about all of these people often (yes, I do!!).

Take care and I'll see you around...

Kristin B)

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Hi Corina!!

Welcome to the forum, I hope you find some answers here.

You asked about bone pain...

I have relatively severe fibromyalgia, and if I exercised too hard (well, before I had POTS that is), I would get so sore that I'd swear my bones were breaking. The pain was excrutiating. I know what you have is different, but I just wanted to let you know that I've had killer pain like that before, and it's not so fun.

I'm sorry to hear you've had such a rough time. Hang in there, I'm sure it'll get better.

- Lauren

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Welcome, Corina. You'll fit in fine here. I take klonopin for the jitters, and feel like I'm playing Russian roulette every time I have to take any new medicine!! I'm sorry you throw up every day. I just have the daily nausea and occasional vomiting. Lots of diarrhea and stomach pain.

There are a lot of people with a wealth of imformation here. You'll make many friends and receive lots of support. I'm sorry you're sick, but I'm glad you found this forum.

Melly

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I have to agree with you a little bit. I am over anxious about medicine now. BUT onlybecause of my bad experiences. When I was young I had braces for 5 years. I never had a problem with dentist or the or the shots. Well about 8 years ago I started going to the dentist again. Every time the dentist would give me a shot I would get really cold and clamy, shakey, jittery, my heart would start racing, my blood pressure would do I am not sure what but I felt like I was going to die. All the Dentist kept saying I had anxiety which made NO sence to me. I had absolutely NO fear of a dentist. So one day I went to this specialist and she gave me a shot and I had a very bad spell. She then told me it was NOT anxiety but that it was a reaction to the epinephrine. SO the next time I went in she gave me carbocain plain 3% with out epi and guess what. I was a bit anxious but that was just me. I was fine.

My old cardio tried me on propanalol and with in an hour I was coughing, I could not breath, I felt like I had a rubberband around my chest. I could not even hardly cough or move without my HR sky rocketing. I was pale white as a ghost, I was cold and hot, shakey, anxious, could not get comfortable, just seriously felt lioke I was going to die. When I do have a reaction to a meds it will put me into a serious POTS attack if I look at it. If I have a bad reaction I have pretty much the same symptoms to the meds if my body does not like it. Some times the symptoms vary a bit. OH heck I am taking this one med and one day I am fine with it and the next not so fine. Get that one LOL

Ya know I am thinking about having my doctor test me for fibromalygia (SP) Is there any tests I should ask for specifically. That would make since about my body pain. See my stomach pain I have all the time my gastro says is out of proportion with my gastro paresis. Though it could be because of the Neuropathy or POTS!

I am still in some what of the mystery phase. NON of my doctors I see here really NO any thing about ANS, POTS etc. BUT they are all great and are working with me and learning with me and our understanding. Before i did not even have that. The only one I hate is the neuro.

I am in the US I just have troubles with insomnia. Yah I could of taken a xnanx to help me sleep. But as I commented I don't want to become super dependant on it.

As for doing things. I can not hardly sit still ;-). But I do have to watch it because I always over do it. I have not learned where my middle is yet. I do aerobics and weights off and on. I do it on my OK days. But I have to have a bathroom near by. I always throw up either during or after or both LOL But hey as I told my surgeoun better to work and and stay strong and be down than do nothing and be down ;-)

I am a fighter but I just got pushed to my limit this year with all this and allot of personal issues with my family that I have been breaking and I am in a place emotionally I do not want to be. And that is on the PITTY POTTY so to speak LOL Such as Why me and I can't do this anymore and I hate being this way and on and on. You get it!1 SO I decided it was time I try to come out of my shell and reach out and that is a hard one for me.

OK there I go. I am off and rambling.

It is great to be here and i look forward to chatting and getting to know everyone and I hope I will be able to give some thing back!!

Cheers

Corina (hopeful-girl)

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Ya know I am thinking about having my doctor test me for fibromalygia (SP) Is there any tests I should ask for specifically. Corina (hopeful-girl)

Corina,

There is only one test that diagnoses Fibro, I'm not sure what its official name is, but I call it the pressure test. The doctor pushes certain points all over your body (but mostly around your neck and shoulders) and if you feel pain, then the diagnosis is given.

However, you should make sure they rule out Lupus, Rhumatoid Arthritis and Lyme Diesase first. They can test for those three by taking blood.

Unfortunately, I haven't yet found a treatment for my fibro that works. I was taking neurontin for about a year, then suddenly developed an allergy to it around the time I fell ill with POTS. The neurontin helped a little, but not much. Before that I was on percocet. The percocet helped the pain, but left me unable to drive or work.

Now I just "deal with it". I have pain almost all the time, but I've learned to ignore it for the most part.

I wish I had better news for you. Hopefully whatever is causing your pain is more treatable, or maybe you'll have better luck treating your fibro :) . Let us know what happens with your diagnosis :)

- Lauren

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hi corina (#2!) -

welcome! i'm sorry you have reason to be here but glad you found us...it sounds like you'll fit right in. most of us were lurkers for some period of time before joining in so you're not along in that regard either.

i'm here much more than on NDRF but actually think i "met" you there when you posted asking about vanderbilt.

i haven't had all of pain issues but can relate to most of everything else you describe...

i'm glad you decided to introduce yourself.

:) melissa

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For my fibro i find massage helps me no end :).... if i dont have one or two massages a week the pain gets quite bad. Thats my advice for muscle or bone pain

Although i suppose you would want to rule out other things as im not sure if massage would exaserbate symptoms of other syndromes.

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Guest Julia59

Welcome to the group corina!

You are not alone in the medication sensitivity area----many of us have the same type of reactions to different meds---especially EPI.........

I'm glad your able to continue to be fairly active. If you become deconditioned, things only get worse----and it looks like your fighting hard to NOT become that way.

Don't you just love the gut problems---All the Bloat---all that fun......NOT.. :)

You have definately found a group of friends who will stick by you...

Julie :0)

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