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Looking for Support/Help!(New user)


Mathias-1023

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Hi, this is my first time posting on these forums even though I’ve been diagnosed POTS/dysautonomia since 2012.
I’m male & just turned 25 two weeks ago.
Along with a diagnosis of POTS, I also have Hypermobile Ehlers-Danlos Syndrome, Narcolepsy, GERD, Fibromyalgia, Major depressive disorder/Anxiety + probable MCAS(based off symptoms &
previous lab results).
 
I currently live in New Jersey and I’m really looking to find and be active in some type of support group for POTS where it be here online or in-person. As I said I’ve had POTS for over a decade, and I have gotten support in the past but I feel like no one ever fully understands me and my issues I struggle with unless they have the same disorders, symptoms, or sometimes treatment options as I do.
 
And even though you would think after the 10 years of trying different things to manage my problems and get a hold of my life and how to function, etc., it only seems to get harder more than half of the time. 
I take a significant amount of medications and they do help me function to an extent, but it’s not the answer. It’s like everything that I take it pretty much just a “band-aid” with all of my problems still underneath..
 
I just wanted to throw all this information out there to get the best help I can because maybe others on here can truly help me. Currently I am on a leave of absence at work and really don’t think that I can go back due to it being just too hard for me to do physically and mentally. I’m good at it, but it’s not the career I want to be whatsoever as well. I am told by all of my relatives and family and friends that I must figure it out and that’s really hard for me to listen and I get very angry because it’s very hard for me to honestly do anything in life.
 
Maybe if anyone here has any advice on employment options for myself or to make money in general to just survive at this point, it would be greatly appreciated. Thank you for listening to me here & thanks for having me!!
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  • 3 months later...

@Mathias-1023 I can relate to your list of ailments. I am nearing 50 and have been searching for answers for so very long. Long list of historical or current diagnoses from ME/CFS, POTS, OI, IH, IST, N2, migraine, occipital neuralgia, familial hypercholesterolemia, etc. I have a whole page of subjective complaints written down in a SOAP note formal by organ system. I finally got the narcolepsy without cataplexy diagnosis 3 weeks ago. Prior to that I had Idiopathic Hypersomnia diagnosed 11 years ago. 10 years ago an MRI reveal WMH on my brain and they chalked it up to migraines, even tho the report said that it could be MS. Now 10 years later, and another MRI, they are sending me back to neuro to re-evaluate for MS. Which could cause the breakdown in both my autonomic and central nervous systems. It can even be the cause of the Narcolepsy. So, I'm frustrated, too. I'm only 3 weeks into trying Modafinil, which hasn't worked in a good way yet. I feel like I'm supposed to be awake, but I'm still as tired as when I woke up unrefreshed. I've never had refreshing sleep for as long as I can remember. 

After reading what you wrote, I felt compelled to remind you that some of these things don't have a cure. Which is why there are bandaids. Even 11 years ago, after my IH diagnoses, they've come a long way and have another line of treatment than before. Don't give up hope. You are young and you have a lot of life left in you, even if it looks different than you may have imagined. I have 27 and 32 year old sons, so my heart breaks for you, as a mother. But don't give up. You never know what treatment is just around the corner! What combination will work to give a little boost, less pain, more energy, all the things we wish for.

As far as employment opportunities go, you need to find something that you can do with your limitations and something that you love and want to do. I work remotely helping people with their technology. Several different systems, but I feel good helping others and it's something I'm good at. You have to find what works for you and get your workplace accommodations in place so that you can do it well. (I have to take at least 2 naps a day!) I hope this finds you with some support. I joined several FB support groups and it helps to know that I'm not alone and that although some people have it worse, many have it better, which gives me even more hope that I'll be in that group, someday.

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