Length And Progression Of Disease

[wibbleway]

Hello everyone! My husband asked me today to reach out and see how many others out there have been suffering with this disease for 10 years. He is so hurting over my disability. My progression was slow until I underwent chemo for breast cancer 4 years ago. Since that the disease is progressing very fast. Any adrenalin rush pushes me over the edge and I can't stand without having a spell. Also the mind fog, heart tachy, and disability of being in crowds is everyday. He sees me struggling and he sees the disease progressing faster and just wanted to know how many more of you are in my shoes. Please let me know so I can reassure him that we are not alone. I also wanted to know how many others have an accelerated progression? Thanks for the support.

[Rachel]

Dear Wibbleway,

I'm so sorry that you and your husband have to suffer through this disabling condition. I didn't quite understand from your post what exactly it is that you are dealing with. Is it dysautonomia? Cancer that has returned? Something else? All of the above?

I can answer as far as POTS and dysautonomia goes. I've been symptomatic for 12 or more years. It was very hard from 1995-1998. Then I felt a little better for a while and was able to have somewhat of a normal life. Daily life was challenging, but I could make it through. My health has been getting worse since 1999. It was slowly getting worse for about 4 years. But it has been declining faster since 2003. And come the fall of 2004 I crashed really hard. There were days that I couldn't get out of bed to get to the kitchen. So if my husband was at work I would just lie in bed hungry until he could come home to feed me. It was really bad.

Things have improved a bit since then. But I still can't go out without a wheelchair. I can walk short distances in the house, but I can't stand for more than a minute. I still need help with showers. I can't usually get out of bed before 10 in the morning. I can't cook, do laundry or clean, so my husband has to do all of that. And most days I need some help with dressing/undressing too. Somedays I am too weak to even hold a phone up to my ear. And we have a one year old son to take care of too.

Sorry, I don't mean to go rambling on about my difficulties, but I do want you to know that my husband and I certainly understand physical disabilities and the challenges that it presents for me AND for him. I get frustrated with not being able to be the mom and wife I want to be. It hurts that I can't cook and clean for my husband and take care of his needs. And it hurts my husband to see me suffering physically. He wants to fix it, of course, but he can't do that. He loves me so much, though, and he faithfully cares for me day after day. He doesn't complain about it, but I know that it is hard on him. Being a caregiver can be lonely and discouraging. But I also know that he wouldn't trade being my husband for the world.

Have you ever looked at the patient handbook on NDRF's website? You and your husband might find it helpful. It talks about dysautonomia, what it is, and how it effects us and our caregivers, and more. Here is the link: http://www.ndrf.org/NDRFHandbook.htm

Here is another link for a page that talks about caregiving and things that the caregiver has to face and deal with. There are tips on this page from caregivers: http://www.ndrf.org/Caregiving.htm Also, at the bottom of that page is another link to a caregiver presentation that your husband would probably like to read. I know my husband appreciated these pages. People often forget that the caregivers suffer too and that they need help and encouragement.

Sorry for the long post. Hope you were able to find some of the answers you are looking for in here. You can also read posts on the forum for a while and you will find many others who face incredible difficulties every day due to dysautonomia.

Lots of love,

Rachel

[roxie]

I have POTS for just over 9 years now. I haven't noticed a rapid progression though, I've gradually gotten better.

Mine improvement was through a lot of had work and conditioning though. I started out just sitting up for 5 minutes everyday, after I did that for a week, I spent a week at 6 minutes and so on and so forth.

I hope this helps, Pm me if you need anything

Madeline

[Guest tearose]

I've had symptoms for more than 10 years... more like 16 years now. I've only had the official dx for five years.

I did feel a great improvement, more of a stabilization and management of my symptoms after I went into surgical menopause. Those hormones really can make it much harder to deal with dysautonomia.

Although I am clearly more disabled than I was 16 years ago, I have not had a predictable progression of symptoms...there have been months where I was almost sure I was almost all better...only to relapse and have a new issue. The good times do happen and over time we get use to dealing with the symptoms. It just has never ended for me or many others.

I was too ill to work enough to qualify for disability and I keep trying to find ways to work again. This is a big issue for me and I worry about aging with dysautonomia.

tearose

[the_dancer_grl]

I've only had this 7 years but I am progressively getting worse as well. Hang in there!

[Sunfish]

cathy -

in short...yes, my illness has progressed and yes, the progression has accelerated. my docs all generally agree that i have a progressive condition at this point.

for a bit more detail, i first received a dysautonomia diagnosis about ten years ago (at 17yrs) , though retrospectively i had some minor and/or intermittant issues since a nasty mono-like illness around the age of 11/12 that kept me home from school for two months (and i wasn't one who liked staying home...i LOVED school).

over the years i've generally followed a progression that has periods of my getting much worse followed by periods of modest improvements...but never back to where i was prior to my setbacks. this is despite trying just about every treatment out there, seeing top docs around the country, keeping/getting as conditioned as humanly possible at any given time, etc.

in the past few years my progression has become much more systemic in addition to my original issues getting worse. it's not that i never had any GI or other issues previously but they weren't drastic; BP/HR/orthostatic/fatigue issues were primary for me. i now have a non-functioning GI tract (am on IV nutrition & hydration), my bladder can't empty on its own (i self-cath), etc. at my best i am able to get out perhaps once a week for an appointment or church (in a wheelchair) though after a recent hospitalization for sepsis i'm pretty much confined to bed as we try to get me at least back to that level of functioning.

so....that's still the shorter version, but hopefully it answers your question. my diagnosis is now considered to be some type of progressive autonomic neuropathy &/or autonomic failure, with some thought that mitochondrial disease may be at the root of things.

melissa

[chocolategirl]

I was diagnosed with "Neurocardiogenic Syncope" in 2002. Since then, I've read the literature extensively and have found that POTS is more accurate and in the recent article published by Dr. Grubb, et. al., I could be categorized in the post-viral partial autonomia branch. The onset of my condition was rapid following an unknown viral illness. My condition hasn't progressed, generally. However, I began having migraines for the first time in my life when this started. About a year and a half later they became more severe and debilitating. Now, I have great difficulty managing them and have them at least 20 days out of a month. So that symptom has seemingly progressed.

[wibbleway]

Thank you all so much for sharing your lives, hearts, and struggles. This disease is hard and like most of you, I am in a downward progression. Today was the first day I've been able to check my e-mail. Christmas Eve and Day took all my strength. Today I'm lying down resting. I thank God for this forum and for your stories and encouragement. Sunfish, my story sounds a lot like yours. I had a MONO type infection 20 years ago, then the breast cancer they said grew for about 10, then the CHEMO four years ago really took its toll and since then the dsyautonomia has been progressively worse each year. I too use a wheelchair for church or shopping. If I'm stubborn and don't then I always end up in the store with a full blown attack and have to sit or lie down, the clerks are bringing me water, and a washrag, and my husband is looking at me (like I told you not to do this), then it takes a couple of days to get over it. PRIDE is such a hard thing to get over. I do wish Mediacare would change their guidelines for electric wheelchairs though. I don't need one in the house (which disqualifies me) but I do as soon as I go out. One more frustration. But, Praise the Lord, I'm alive! Again thank you all. Cathy