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Just a question


bamagirl
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Since I have watched and felt this horrible disease slowly take over every part of my body over the past twelve years, and now for the past three I had to quit work because it is so bad I was wondering from you guys: Is this going to continue to get worse and worse progressivley? Does anyone get really bad and then slowly get better? I am a lost soul righ now and just breathing and nothing more. I have tingling and creepy crawly sensations every day from head to toe, adrenaline surges, sleep constantly then when I try to sleep I feel like I am on speed, vision is drunk feeling, low bp, nausea, itching, flushing, constipation, sesitive to light, startle reflex out of control, feet and hands go numb, can't take heat. This is every day. How can I live with this and be ok? I have yet to find anyone who has all my symptoms, I am realy scared and feel all alone!!

bamagirl

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Bamagirl,

You are not alone. We are all here facing the same feelings of uncertainty and discouragement about our futures. I bet many of us lay in bed, as i do now, with the laptop on our stomach wondering if we'll ever have the energy to do the things we want to do. This illness is very unpredictable and so it is so scary. I understand your feelings and hope right along with you that someday doctors will figure out how to treat this stuff. It seems unsatisfactory that in this day and age people like us are suffering from a disabling condition with no cure. It almost makes me laugh/cry when my primary doc says, "well, we both know there is no cure right now." How can there not be!? I am right there with you, but there is hope that we can all improve. We just have to hang on to that and keep pressing on each day. That's the only way to make it through these dark times. I like to listen to a song by Third Day called "tunnel."

clip at:

http://www.thirdday.com/music/#player

or second track on the homepage:

http://www.thirdday.com

It reminds me that life keeps changing and we have hope for the future.

Kristen

Edited by JaneEyre9
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Sorry to hear you are feeling so low. I'm new to the forum, and I'm sure you have way more knowledge than I do, but since I'm newly diagnosed and am just going through rounds of testing to see if my POTS is primary or secondary, some of the symptoms you describe really strike me. Have you been tested for Mast Cell Activation Disorder? The heat intolerance, constant sleeping, adrenaline surges, low bp, nausea, and especially the itching and flushing. I'm being tested for that right now, and my doc was especially insterested in whether or not I had flushing just prior to or during an adrenaline surge.

I've also been concerned about what the future holds for me; if I would get better or worse, since my first symptoms I can recall started about 7 years ago but only started to really ruin my life a year ago. My doc told me that it depended on finding the cause, and that age seems to matter when it comes to getting better or getting worse (meaning there are times of life when the disorder is more severe), but in general, most people improve. He is a big believer in positive thinking, (but since he doesn't have a hideous illness that sometimes makes almost every waking moment miserable, I'm not sure he really 'gets it') and one thing he told me is really true, if you think about it. He said that there was no reason not to assume that I'm going to get better. That's true, since nobody has a road map for this thing.

I know that just a few months ago, I was in bed almost all of the time. Now, I'm living a normal life for the most part. The only thing I know for sure is that most of us know how you feel! You are not alone!

Carolyn

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I do think that the scariest part of this illness is not knowing when and if we are going to get better. Somedays I feel 80%(GOOD) and other days I feel 10%(Horrible). That's what bothers me the most. I am happy that I do get the good days, but then the next day you have a horrible day...it stinks that the good days are taken away soo many times. There is no reason to think that we are not going to get better though, just keep believing, even if you want to give up on believing don't, we need to keep the faith. :)

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I know that you are feeling worse than I do but my life experience has been we don't know what tomorrow will bring good or bad. You have to take it one day at a time and sometimes an hour at a time. The future isn't promised to healthy people so we have to remain on track. I do wish there was some way for you to get some breathing exercises or meditation help. I was leary but it does help. I'm thinking of you. Keep your chin up!

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bamagirl.. hi!

I'm so sorry that you feel so horrrible.. i just wanted to let you know that you are not alone.. i suffer from all the symptoms that you speak of.. some days are worse then others...

Do you by chance take proamatine (midodrine??)??.. that medication can casue tingling and creepy crawly feeling...I had those feeling when I was on that med.. and experienced it mostly in my head face..neck.. and arms.. and once i stopped taking the proamatine it stopped (the meds wasnt helping me.. and I couldnt handle th side-effects..).. for some people.. there bodies handle the med.. and the tingling and stuff eventually will go away once your body gets used to the pill.. and for others it doesnt...

I just want to re-assure you that you are not alone..I/WE really do understand what you are going thru and what you are feeling.. hang in there.. I know easier said then done..take things slow.. sometimes you just have to take things one second at a time...

BIG HUGS

linda

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Hi Bamagirl

You are not alone, you have just described what I go through on most days. I have had a couple of days where all of my symptoms were not acting up. As I am fairly new to this disease I do not know the answer to your question. I too have the same question but I just would not ask it. It is hard to live with all of this stuff in our body acting up all the time. All we can do is to try to take it a minute at a time and try to see the light at the end of the tunnel. When you have days that you feel ok try to remember or write down what you did differently that day even the smallest of things. I know for a while I didnt realize that my hot baths were making it worse for me, or that the temperature in the house was making things worse. You see the littlest things is what we have to look for. I truly hope that you start to feel better. :D Vanessa

Since I have watched and felt this horrible disease slowly take over every part of my body over the past twelve years, and now for the past three I had to quit work because it is so bad I was wondering from you guys: Is this going to continue to get worse and worse progressivley? Does anyone get really bad and then slowly get better? I am a lost soul righ now and just breathing and nothing more. I have tingling and creepy crawly sensations every day from head to toe, adrenaline surges, sleep constantly then when I try to sleep I feel like I am on speed, vision is drunk feeling, low bp, nausea, itching, flushing, constipation, sesitive to light, startle reflex out of control, feet and hands go numb, can't take heat. This is every day. How can I live with this and be ok? I have yet to find anyone who has all my symptoms, I am realy scared and feel all alone!!

bamagirl

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Hi Bamagirl

Please don't ever think that you are alone. We might not all have the same symptoms but we all suffer from many symptoms. I made a promise to myself a long time ago that this horrible illness might take away many things from me but I will never let it take away my hope! Please don't let it take away yours! I had 2 months this Fall that I felt so lousy (physically) that I felt like "what's the point" every morning when I got up, but the point is as long as we have tomorrow, we have everything.

I had an appointment with Dr. Grubb yesterday and I have a whole set of new "issues" that require more testing and doctors visits. I told Dr. Grubb that I feel like I'm climbing up a ladder and every time I get somewhat close to the top (or at least away from the bottom) someone steps on my fingers and knocks me down a few rungs. But I'm going to continue to climb back up that ladder, never giving up hope of reaching the top.

Last year at the age of 59 my cousin died of MS. He was my hero (and still is)! He was a very successful musician and composer. He developed MS around the age of 29. He first noticed that he was missing beats when he was drumming (you can only imagine if you went to a doctor with that as your only symptom). Well he continued, with the help of his wife to look for an answer, until he was finally given the diagnosis of MS (he had a great sense of humor, so I can say this...he was probably relieved to know that it was MS and not his drumming abilities :D ). Anyways, he continued to live his life to the fullest that he was able. He was featured on GMA and when they ask him what it was like to live with MS he responded that he didn't live with MS, MS had to live with him. Once he described life as a merry-go-round, saying that he was just riding a different one now, and the music might not be as pretty and the ponies not as colorful, but as long as he was on it, he was going to enjoy the ride. According to society's standards his quality of life continued to deteriorate over the years, first he couldn't drum, then he couldn't walk without the use of a cane, then he could no longer play the piano, he could only hum all of the music that he had inside of him. but he continued to write music with the help of his wife (he hummed, she was his hands playing and writing the music in his head). Then he could no longer drive and he had to use a wheelchair, then he could no longer push the chair himself or lift himself from bed or dress himself , then his eyesight started to go, and soon after he could no longer hum all of the music inside of him and it became difficult to talk above a whisper and even more difficult to eat or drink. And yet he continued to live and work and make many, many contributions to the music world and have a wonderful love affair with his wife and raise a beautiful daughter and socialize with friends up until his last final moments. He said many memorable things over his lifetime, but two that I think sum up his attitude about his disease the best were said on two different occasions the last week of his life. He was shopping with his wife on Michigan Ave and as she pushed his wheelchair past a store window he caught a glimpse of his reflection in the window and ask her "Am I really that crippled?" A few nights before he died, while out to dinner with his wife and another couple he said, "I am so lucky, I can't believe the quality of life that I have" (he was being sincere). His wife didn't give him a funeral, she gave him a performance complete with a program. She said that she felt that it was more appropriate because he loved performances (and would expect a program B) ). Different musicians played songs that he had written throughout his life, friends told funny stories (many of them involving his disease) and many of us when out to dinner afterwards because that's what he would have wanted to do if he were there. To the very last minute of his life he didn't live with MS, MS lived life with him! I hope that you will find inspiration in this very true story about someone that I will always love very much and who even in death continues to be my inspiration and make me smile at the same time the tears are spilling from my eyes.

We are all here for you...

Bren

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Hi Bamagirl,

I wish I could say some words of wisdom here. I feel controlled by symptoms though they are not by far as severe as many other members have, but for me it is terrible. The adrenaline surges are horrible. I get them often. Sometimes off and on all day for days.

I am now with my heart rate at rest either being ok or a bit high but as soon as I get up it shoots up. It is very uncomfortable for me. I suppose some get used to it but I notice every blessed little thing that it drives me crazy. I've been up since 2:00 this a.m. when it started. I am pushing fluids with no change.

It is hard to see the light during these times. Staying positive even 25% of the time is tough when you feel so bad. Just think positive every time you feel less symptoms and think that this is the start of things getting better, maybe slowly but they will.

I hope you have been feeling better.

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Hi. Your symptoms are just like mine except flushing and itching. But I have about 50 more I could add to it. :) I got better, but worse again big time with the flu. I got better by increasing the head of the bed 6 inches, beta blocker inderal, salt, drinking lots, and exercising which started off as only a couple of min a day. Now I can do 40 some days on the bike. Not now-but right before I got bad again. I never was 100% again and do not expect it. The beta blocker did wonders for the startling thing--I just about jumped out of my skin over everything, could go days without sleeping and not get tired--whcih was nice, because if I did not sleep, I did not get as bad, I assume from not laying down. The beta blocker lesses the surges and the intensity of them for me. Now the surges consist of whole body shaking, fear, needing to go to the bathroom, and maybe a few other things. But, I do not get the drastic bp swings, and racing heart and not as much fear. I do have all over numbness. Oh, and compression hose--Jobst. I hope you get better. It is so difficult to cope with this. And I understand completely, and I know the best thing is reading about others like you--because it is so nice not to be alone. Jennifer TX

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