I'm Losing Hope And Feeling Grim

[IDreamInColor]

I'm 45 yrs old now and looking back I believe the dysautonomia started very early in life. As a little girl I had quite a few bouts with anxiety, to the point of actually running off the school yard, crying the whole way home.

By 7th grade I was having aura migraines, and extreme weakness and fatigue, lightheaded, and blacking out during excersize. By 10th grade I was admitted to the hospital because I was feeling so unwell, the only thing they found was protein in my urine.

In my 20's the anxiety was becoming severe and the fatigue continued. In my 30's I quit my job due to panic attacks and extreme fatigue. At age 39 I was diagnosed with graves disease.

I was hospitalized in 2005 because I had become so weak, barely able to eat, losing weight, hair falling out, extremely weak, tremors, couldn't get out of bed, and having very scary flushing feelings consume my body, etc. Their diagnosis was of course anxiety and they prescribed paxil and sent me on my way.

August 2010 I was diagnosed with microscopic colitis, I spent over 5 months expelling water up to 12 times a day, everyday. I quickly became very weak. I was put on entocort which helped get that under control. A few months later I was diagnosed with gerd as well.

August 2011 I ended up in the ER due to vertigo, while at the ER my blood pressure dropped to 70's over 40's, and my body wouldn't stop shaking. Their diagnosis was dehydration. They held me for 2 nights until my blood pressure improved.

September 2010 the nausea was fierce, and I'm feeling a huge list of symptoms. I had a major breakdown because I couldn't take another day of feeling so ill. I drove myself to a different hospital and was admiited for testing for 5 days. While at the hospital the doctor prescribed fludrocortisone. Two weeks later the doc ran a tilt table, and while I didn't pass out (probably because I was on fludrocortisone) I did become very shaky, sweaty, and my legs started jerking uncontrollably. It was at that point he diagnosed me with dysautonomia and put me on paxil 10 mg.

So here we are now and I'm continually getting worse. The jerking in my legs is happening all day long and has gotten worse. I feel extremely weak, nausea, daily headaches, tinnitus, tremors, shaky, no appetite, chest pain which is getting worse, I've lost 50 pounds in the last year. I can't seem to stand up for longer than 7 minutes without problems. And the list of symptoms goes on and on.

Last night I had a meltdown, I'm finding it more and more difficult to live feeling like this, I spend most of my time in bed, too weak to get up, I am grieving the person I used to be, and I'm losing hope that I will ever feel better. Will it ever get better? Is this how I will have to live for the rest of my life?

[Dizzysillyak]

Hugs ... I'm sorry to hear that you're so distraught. I've been there many times too as I'm sure

many of us have.

I stopped feeling that way when I discovered what food was doing to me and realized that I'd missed

the whole diet / health connection ... It was one of those light bulb moments for me. I was 50 years old when

I finally got it. My integrative doctor has played a HUGE role in helping me cope.

Granted, I'm not cured of dysautonomia but because of al of my symptoms that have resolved, I'm hopeful.

Have you looked at functional medicine ? D

[sue1234]

Has your Grave's disease been thoroughly addressed? Have you had a thorough work-up from an endocrinologist?? Specifically, have they done a cortrosyn stimulation test to see if your adrenals are working okay? That would test for Addison's disease.

[lieze]

I'm sorry for what you've been through,

I remember being so anxious at a swim class having to wait to jump in that I lost control of my bladder and peed right down my leg.

It's horrible,

Maybe we don't even remember all the ways this has affected us our entire lives we just remember the really bad stuff.

I don't know if we'll get better or just settle into our life the way it is now and learn to find pleasure where we can.

I'm sorry that you're feeling so badly,

I myself try so hard to accept but it's very hard to do that when you're hurting and feeling so badly.

I hope you get a break on your day today where your spirits get lifted for a while and you can just find relief from all your pain even if it's for a couple hours.

[MomtoGiuliana]

Have you seen a physician with expertise in treating dysautonomia?

I'm sorry you are having such a difficult time.

[icesktr189]

This is how I feel right now, but TRY to have hope. I have been just like you are right now (actually feel that way right now myself) BUT I was better for a couple years after that. You CAN get better, you just have to look at other options. Keep pushing from doctors, try every medication route.. have you tried midodrine? Lexapro helped me a lot too.

[HopeSprings]

I understand completely. I'm having a very difficult time dealing with this emotionally. And I had the same thought this morning - is this really it... forever? The only thing that makes me feel better is to keep looking for answers (though frustrating) - I keep hoping to figure this out. Hang in there - you are not alone. ((hug))

[lieze]

Another idea is with dietary issues which I have too it does something to the mind.

My thoughts have gotten very dark and I have illogical fear over routine medical treatment.

I wonder if you need to look at your diet.

Have you tried drinking anything like ensure and focusing on eating whole foods.

I eat just a little bit every hour or two and sometimes it's not only boring and bland and the same thing over and over but it can make me feel sick systemically and to my stomach but in the long run this activity is helping me to gains few pounds and get a little strength back.

I keep telling myself that my body does not care what I put into it so long as I have protein, carbohydrate, and fat vitamins minerals and water. Try to look at the basic needs of the body and provide that however you can even if it doesn't taste good or feel good at the time.

Our bodies need fuel to function properly and without that I have found my mental and emotional outlook also deteriorates.

[Katybug]

I am really sorry you are feeling this way emotionally right now. I think the emotional roller coaster is the hardest thing about this disorder. Its really hard to come to terms with what you can't do right now. I spent most of Aug., Sept., and the beginning of Oct. in bed or on the couch and it was awful. I just have had a 5 day "good day" streak where I have been able to leave the house for an hour or two by myself each day and it has been like getting out of jail. I am so thankful for the good days.

I want to encourage you, as others have, to investigate all the medical possibilities fully and find doctors that specialize in the disorders/illnesses you have and who are compassionate. The right doctor (medically and emotionally) makes tons of difference.

Keep pushing forward and know that there is hope and you are not alone.

Katie

[Godsgal]

Wow if I haven't felt exactly like you worded a million times. Losing hope, wondering if this is going to be my life. And then God reminds me He has a plan for me and I can and will get better in the right timing. I can tell you I have been terribly awful bedridden peeing in a bed pan to up walking around and able to stand if I keep moving for maybe 25 minutes now. I used to be like you...unable to do it long at all. I used to be unable to lift my head up because I would get orthostatic. Midodrine has helped me a lot. I'm wondering if that has been an option for you. I struggle with low bp and that has helped a lot. Getting to the bottom of my POTS/dysautonomia diagnosis has helped a lot too. In the beginning I sought out the best professionals in each medical group, rheumatology, neurology, hematology, allergy/immunology, cardiology, electrophysiology, all that. Then I went to Mayo Clinic for a week. Through all of that I found out the cause for my POTS--mast cell activation disorder. Maybe you could get medically checked out going through each field or maybe go to a tertiary care place such as Mayo could give you some really good answers. There are a lot of things to rule out in this condition that exacerbate it.....auto immune diseases, thyroid, adrenal glands, lyme disease, the list is a little overwhelming HOWEVER getting a lot of things ruled out so you can find answers is doable and worth it. You can look through the causes of what we have on this site and try to get them ruled out. I've been so lost, so down so many times. Take heart and believe you can get better. I'll be praying for you

[skiberthoud]

Sorry for all your heartache! I think you've gotten a few really good tips here. I also agree that a functional medicine doctor could prove really helpful. That's where I've found the most help. They typically are really good diagnosticians - looking at a variety of things. It's a long, hard road (really long for you sorry for that) but please don't give up. Keep searching for someone that can help. Never settle and always believe you will get better!

[lieze]

I think too until you can find an underlying cause treat your symptoms the best you can or make lifestyle changed to improve quality if life wherever possible.

I guess I still want to believe that it is possible for the human body to heal on it's own but I'm certainly one also who looks for answers and wants to fix things.

I agree with everyone else.

Don't give up looking.

[chipper]

This illness is so cruel, but I know you will get better. We all grieve because of the pain of not being the person we want to be. I was so sick in bed for years that I dreamed about being out of this world most of the time. Then finally the doctor's office called for an appointment. Four years later I was driving again, not nauseated, not dizzy , had. energy, and many more symptoms were GONE. THE BEST THING ABOUT THIS ILLNESS IS THAT WE CAN GET BETTER. HOPE YOU HAVE A BETTER DAY VERY VERY SOON!! HUGS and HUGS!!

Love, Mary

[HopeSprings]

Mary - how did you get better?