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I am the sickest person I know


bamagirl
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I feel like I am dying. I am the sickest person I know. Even as I read here there are mostly people who aren't as bedridden as I am. Maybe I am missing something? My vision is so bad I can't even explain it. I feel drunk or on drugs or something all the time. I am nauseaous every day, have nonstop chills, my skin burns, I have horrible adrenaline surges that make my hr go up to 200, migraines, tingling, dizzy, audio hallucinations, sleep paralysis. This has all gotten worse over the past four years. Does this mean I am going to get worse and worse? Are there any chances this will get better? Please if anyone out there has all these things to I really need to know how you are doing and how you cope!! I am not a fainter and my hr doesn't go up every time I stand. All my problems focus around these adrenaline surges that make my bp and hr shoot up. Please I need some support.

thanks everyone,

bamagirl

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Dear bamagirl,

I don't know your medical history, so can't say much about whether or not medical intrevention might help you become more functional.

I have been where you are. Some of my symptoms were different, but still, the total of all my symptoms added up to my being completely nonfunctional. I am much better now.

I think what you need most of all right now is hope. Hope can pull you through a bad time and get you on the road to improvment. To get hopeful, get a plan of action and then see it through.

Get the absolute best medical help you can. This may mean research to find out who is most able to help a person with your particular symptoms, and perhaps traveling to get there or having more testing.

In addition to seeking the best medical care, change at least one thing in your life. Do something different than you have been doing, even it it is a very small change. Keeping hope alive requires that you be proactive. Change your focus to what you can do for yourself rather than how terrible you feel. You may be amazed at what you can come up with.

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I have to ditto Michigan Jan. It is easier said than done, but try not to think the worst. You need to get some Dr. to listen to you. You need to call and be seen by your Dr. and have some tweaking of your meds, something to give you some relief.

Have you been to an endocrinologist.? I don't know how extensive your testing has been but that might be another avenue to pursue.

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Well im sorry to hear your going through a rough time. we have all been there. me and my mom have expeirenced every symptom in your list to extremely intense levels. infact im a down point now. We too are the sickest people that weve personally met, aside from the people i have came face to face with thru DYNA. So i hope that sets your mind as ease abit, your not the sickest one you now anymore :D

B) Sara

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I am so sorry you are feeling so bad. I don't have the same problems. I guess the best I can do is let you know there are people out there who hear you and believe that you have to hope tomorrow is better and if that is too much, then the next hour will be better. I hope you have let your drs office know. my prayers are with you.

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Hi, please don't feel alone. While some of our symptoms may not be as bad as yours we know the emotional ups and downs almost everyone here has gone through. POTS has had an effect on all of our lives in some way shape or form. I know there are a few members here who suffer alot of the symptoms/severity that u also do. Maybe PM them and see what helps....even if something helps just a little bit or for a short time it would be worth while to try. I agree that you should contact your doctor(s) there has to be something they can do for you....Here's to a better day tomorrow B)

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Guest CyberPixie

Believe me, you're not alone. While I dont have quite the same symptoms as yours I am very very ill with POTs. Bedbound, hardly able to do anything apart from go to the loo and even some times I cant get there even though I have an ensuite.

Today is a really bad day for me and I feel like I'm dying too (hugs). I done something stupid on xmas eve so I suppose I've only got myself to blame. Plus my period is due anyday and I feel terrible.

I suffer badly with the breathing side of things and heart pounding/erratic chest pain and pressure and weakness, lightheadedness and extreme weakness and tiredness, nausea, low blood sugar, frequent urination, numbness all over, altered awareness states at night, I could go on. I also have severe pain and stiffness all the time due to Ehlers-Danlos.

I feel like I'm waiting for something, like when you're ill with a cold and you know it's going to end and you'll start to feel better, only I don't think I'm going to get better. I've just got worse and worse over the years.

Just batten down the hatches and cling on for the ride while the weather's stormy. One day soon we'll surely get a better day and can feel more positive.

Edited by CyberPixie
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Hi

I remember once going to the dentist. I was so weak that when the hygienist told me to come back in 6 months I laughed because I honestly didn't expect to be alive. (the dentist later told me that seeing my condition, he didn't expect me to be alive 6 months later either). This was in a period of time where it happened several times that I felt I was "fading out"--hearing sweet singing, and yelling (in my mind) to leave me alone, I have a family to take care of. I remember thinking about what kind of lasting momento I could give my kids. Not because I'm a pessimist. I'm usually a jolly optimist, but I was that weak. It took 3 years, but I finally have pretty much a full dx, and a treatment plan. While I still have a long way to go, it's vastly different from those dark dark months.

It's so hard to be aggressive about our medical care when we need it most. Is there someone who can advocate for you? If not a friend or relative, maybe a representative from an organization? You will get better. You know your body best, if you feel you are not getting the proper advice from even very good doctors, look elsewhere for medical care. I needed to do that. Try to keep your records organized and document as much as possible. The more scientific you are about it, the easier it will be for some knowlegeable doctor out there to help you.

hugs

ariella

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Bamagirl, you can not give up. I too sometimes want to give up, but I try to find things that will take my mind off of how I feel. Do research, try to find a different doctor to help you,anything! I even started knitting again. I cant do it for any length of time, but it gets my mind off of things for a little bit. The one thing with my knitting is I can do it by touch. I dont have to see to do it. So my bad eyesight is not a hinderance. Try to find some kind of craft or something to do while you are lying down. But dont give up. Dont lose hope that it is going to get better. We have to hang on; to our hope always. No matter how bad I feel if I think about it I know that I still have hope in there somewhere. I am sending you big Hugs your way and a ray of sunshine to brighten your day. If you would like to PM me do so any time. I do know that the people in this little forum are great, and they all have big hearts and shoulders. This site is a valuable asset in my life. Keep posting, get all of the frustration out. It is better to be on the outside than the inside, as my therapist puts it. Hope today brings a better day. :):D:P Vanessa

I feel like I am dying. I am the sickest person I know. Even as I read here there are mostly people who aren't as bedridden as I am. Maybe I am missing something? My vision is so bad I can't even explain it. I feel drunk or on drugs or something all the time. I am nauseaous every day, have nonstop chills, my skin burns, I have horrible adrenaline surges that make my hr go up to 200, migraines, tingling, dizzy, audio hallucinations, sleep paralysis. This has all gotten worse over the past four years. Does this mean I am going to get worse and worse? Are there any chances this will get better? Please if anyone out there has all these things to I really need to know how you are doing and how you cope!! I am not a fainter and my hr doesn't go up every time I stand. All my problems focus around these adrenaline surges that make my bp and hr shoot up. Please I need some support.

thanks everyone,

bamagirl

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This won't kill us. That's why lots of doctors don't take us seriously. My own POTS consultant told me at my last visit "It's not like you have only 24 hours to live, is it? There's no rush to get treatment arranged"--

I have felt as bad as you. I have been so ill that I now have a hospital bed at home because I need to sleep at a head up tilt. THere are days when I physically cannot sit up in bed so I need the motor of my bed to do it for me.

Every person on this board has experienced horrific things through dysautonomia. It can wreak havoc with the entire body. But I think the one thing we have in common is a determination not to give in.

I have experienced the biggest challenge of my life this last 3 months in trying to study while dealing with this condition. It almost broke me, but you know what? I'm one term in, and I'm still going. Because I *refuse* to do anything else.

There are days when everything is impossible, but that means I just have to work twice as hard on days when I CAN do stuff.

If I'm forced to take time out of things, I focus on what I'll do when I CAN get back into the loop, later.

Many (but not all) people on this board find that they can deal with this illness along the same lines. If you only want to find the bad bits, it's very easy to magnify them, god knows there are enough to choose from with dysautonomia.

If you look for the positives, they may be harder to find, but they are golden. I think of Emma's story on the story pages- Emma is perhapds th emost severely affected person I'[ve read about- tubes in her tummy, catheters, a year in hospital. unable to stand at all- yet she sees the positives and is making the most of it.

You aren't alone.

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I cannot add anything to the already thoughtful posts other than to send an electronic hug and wishes that you would feel better.

One thing I might mention...the longer that you stay in bed, the more deconditioned you become and the more marked increase in your symptoms. The deconditioning would happen even in a healthy person. The deconditioning really gets worse with POTS.

A hobby is also something that helps. I second the knitting. Knitting is easy to learn and, wow, what scarves you can make.

I urge you to get in touch with your doctor as soon as possible so that you can get a plan/strategy in place to help deal with your awful symptoms.

Please feel better.

Lois

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I had all the symptoms you describe three years ago. I was so sick I could barely sit up much less get out of bed. I finally was diagnosed and learned about the various things I could do to get better. These included medication, diet and exercise. It was a long, slow improvement for me and three years later I am still on meds, but I am functional. I also thought something terrible was wrong with me and I would surely not get better, at times. It is also important to BELIEVE you will get better--as hard as it is to have a positive outlook when you feel absolutely miserable.

It sounds like you really need to see a knowledgable doctor and start trying some proven POTS treatments to see if they will help you. As others have said, staying in bed will not make it better and will likely make you even sicker, due to deconditioning. But this is something you need to talk to a doctor about.

If you need help finding a doctor, there is a list on this site. In addition, most electrophysiologists are at least somewhat knowledgeable about POTS, and there is likely to be one in your area, unless you live in a remote area.

Katherine

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I'm sorry to hear you're not doing good.

Just so you know, I once was the same way. It took three years of suffering and getting worse before I started to get better. Dr. Grubb says that most people get worse before they get better. Maybe you're just at your peak and you'll start feeling better soon!

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I remember August of 2002. We were living in Montana - 1300 miles from home - I had not been diagnosed yet but knew something was terribly wrong. I was getting weaker and more fatigued every day. I talked Hubby into making "one last trip home". We were here for 4 days. I was convinced I was seeing my (then 10 year old) son for the last time... I thought that surely I would never see the rest of my family again. And the dear people at church who were so kind to us...

I promised myself that if I was still alive the first of the year (2003) that we would move back home. I went home from that trip and started packing. I think I got all of 4 boxes packed. They were sitting under the dining room table for months because I got still weaker and weaker, one day I made it in to work and was only able to sit upright for 2 hours. I came home and went straight to bed. That was Sept 12, 2002. I was in bed until the middle of January 2003. Then one day I managed to get up and start slowly packing again. I had made it until the first of the year and I was determined to keep that promise to myself and I did. We packed, made the big move and, while I am nowhere near what I was before I am better than I was in late 2002. But most important... I did live to spend lots of time with my son!

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  • 4 weeks later...
I feel like I am dying. I am the sickest person I know. Even as I read here there are mostly people who aren't as bedridden as I am. Maybe I am missing something? My vision is so bad I can't even explain it. I feel drunk or on drugs or something all the time. I am nauseaous every day, have nonstop chills, my skin burns, I have horrible adrenaline surges that make my hr go up to 200, migraines, tingling, dizzy, audio hallucinations, sleep paralysis. This has all gotten worse over the past four years. Does this mean I am going to get worse and worse? Are there any chances this will get better? Please if anyone out there has all these things to I really need to know how you are doing and how you cope!! I am not a fainter and my hr doesn't go up every time I stand. All my problems focus around these adrenaline surges that make my bp and hr shoot up. Please I need some support.

thanks everyone,

bamagirl

i am a fainter. i faint all the time. almost everyday or if i don't faint it is because i am in a wheel chair until i can get a treatment to work. everytime i stand my hr goes up. and all the other symptoms... yeah i have them too, plus more. what do i do... i still get up no matter how bad i feel and i try to have as close to a normal life as possible and i get help when ever i need it. i am about to loss my dream job but in the end i know all will get better. it always does. good luck to you and i really do hope that you get better. just start venting or something. even if it is at the mirror. i do that all the time. i also think that someone somewhere has it worse off than me. just try not to think about the pain. i know it is hard. i try not to think about the passing out but it definately still happens. i am always in the ER. well like i said though, good luck. i'll pray for you.

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I have the same surges you describe, as well as the persistent, chronic POTS symptoms. I've talked to Dr. B here at Vanderbilt, and right now they're not quite sure what's causing them, but I'll let you know as soon as I find out.

Are you seeing anyone for your symptoms? Have you been diagnosed with dysautonomia, or autonomic failure? Havy you been tested for phenochromotomas (not sure of spelling)? They're tumors on the adrenal gland that can cause all the symptoms you describe.

Cheers,

Lauren

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