Chronic Orthostatic Intolerance

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Trial & Error Woes

I’ve been diagnosed with HSD/hEDS, Orthostatic Intolerance (POTS-like symptoms), Chronic Migraines, ADHD, PTSD, and Fibromyalgia. Most of my medications prescribed are alternative use as treatments for my conditions, except my ADHD medication. So, it’s a lot of trial and error to see what works because of the general invisibility of my conditions & most being poorly understood, if not stigmatized.

Which brings me to why I’m posting - not only is this exhausting and frustrating for myself, but my partner gets extremely upset whenever I decide to try a new medication prescribed or try adjusting my medication with provider recommendation. Although it is voiced and agreed that we want me to feel better and not be so impacted by my conditions, it seems like trying out a medication to see if it helps is something that isn’t acceptable for him.

Some of the concern I understand as I have these anxieties about trying new medications. But I’m also willing to try something if it’s known to be used for my conditions and there’s a chance it will make me feel better, which in turn makes both of our lives easier… I’ve tried medication for my PTSD, but that didn’t work for me, so my provider and I agreed to discontinue since I found therapy to be efficient. That and HSD/hEDS are the only conditions I do not take medications for right now (most medications for hEDS/HSD are for chronic pain and comorbidities, though). But those 2 are mainly managed through other modalities; some of my medications can help reduce the frequency or severity of symptoms caused by those 2 conditions. It’s not perfect, and I’m still struggling to get better management of my symptoms that I get the relief needed to function more.

However, I need to alert my partner in case there’s side effects requiring medical attention. And I think fear is partially why he gets upset, but it’s directed at me in a way like I don’t actually need this medication or at least have no reason to try it to see if it works. He will make comments as if I have not looked into the medication before trying it out & as if I have not been significantly more impacted by my unmanaged symptoms over the past couple years that I can’t even do half the things I used to be able to do.

But all my conditions require(d) trial and error; at least with ADHD, the trial and error was brief in comparison to all my other conditions, which were more delayed in receiving diagnosis & dismissed for over a decade. And it’s also why multiple modalities are worth exploring since the delayed diagnoses have resulted in more complexity requiring longer recovery time overall.

So I ask…
How do you cope with all the trial and error with treatments/medications for management of dynamic and often poorly understood conditions?
How do you help the ones closest to you understand that this trial and error approach is what it takes to hopefully be able to function better with complex, dynamic, and multiple health conditions?

#JointHypermobilitySyndrome #HypermobilitySyndrome #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #ChronicOrthostaticIntolerance #Migraine #ADHD #PTSD #Fibromyalgia #ChronicPain #ChronicFatigue #MentalHealth

16 reactions 7 comments

Pillow struggles

With fibromyalgia, orthostatic intolerance (most likely POTS), and HSD/hEDS - I’m finding I need more pillows that provide support while resting reclined in bed and for sleeping without dislocating/subluxation.

** Any recommendations for pillows that support neck while sleeping? Or neck support while sitting reclined on the bed and back support pillows? **

I’m just curious if there are types of pillows or specific brands that anyone can recommend. My cervical & thoracic vertebra shift a lot while I sleep and my shoulder tends to dislocate while sleeping on my side. But I also don’t get enough neck support with my current pillows when I sleep on my back. I just can’t seem to find pillows myself that help me. #Fibromyalgia #HypermobilitySyndrome #JointHypermobilitySyndrome #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #ChronicFatigue #ChronicPain #ChronicOrthostaticIntolerance

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I’m new here!

Hi, my name is TLindsey73. I'm here because I have been diagnosed with Sjögren’s with CNS involvement, gastroparesis, POTS, and small and large fiber neuropathy. I worked frontline during covid as a respiratory therapist. I was symptomatic for covid but tested negative with several other healthcare providers. I started having issues before but it wasn’t as apparent until December 2021. one week before I got married. my quality of life has forever changed. I am seeking support from others who also experience symptoms. I am seeing most of my doctors are not knowledgeable of Long Covid. my research points to this. I look forward to sharing support and encouragement with others.

#MightyTogether #Gastroparesis #ChronicOrthostaticIntolerance

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I’m new here!

Hi, my name is DisabledLiv. I want to spread awareness and figure more about my cond

#MightyTogether #ChronicOrthostaticIntolerance #pans/PANDAS #CommonVariableImmuneDeficiency

2 reactions 1 comment

I'm new here!

Hi, my name is CantDance. I'm here because I found a post I could totally relate to and I would like to gain more insight into how I can improve my days, relationships, and chronic illnesses in any way possible. I was diagnosed with IBS-D in 2006, PTSD, generalized anxiety and depression in 2008, and in 2019, I finally went to Mayo Clinic and saw 5 specialists including an Interdisciplinary MD and was diagnosed with myalgic encephalomyelitis(ME/CFS), fibromyalgia, autonomic, autonomic nervous system disorders, centralized sensitivity syndrome (CSS), and allodynia on top of all of my previous diagnoses. My chronic conditions had flared after a kidney stone surgery at Mayo’s hospital. I came to recognize other times in my life when I was having a flare but didn’t know what it was. Things got worse after having Covid-19 in Dec. 2020. I was once an active involved parent & grandmother and a ballroom dance instructor/choreographer/performer and social dancer. Life is not the same! I’m lucky to have a loving husband and four understanding adult children. although it’s hard for them to understand the scope of my illnesses, they do their best to get educated. I still struggle with limiting my energy expenditure, guilt over not contributing financially to the household as I once could, incurring medical expenses, and missing my old life. Thanks for letting me join in.

#MightyTogether #Anxiety #Depression #Fibromyalgia #PTSD #ChronicOrthostaticIntolerance #ChronicPain #MyalgicEncephalomyelitis

12 reactions 4 comments
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New episode to be released tomorrow, 4/1!

We’re talking humor and laughter as coping strategy! Ridiculousness and absurdity ensued while recording this episode and laugh out loud Brain Fog truly happened which we decided to not edit out. Come Listen and Laugh with us!
00:05 am EST release 😄👏🏻.

(At this time, we have no episode transcripts but hopefully soon there will be. Please Be patient as we are doing this on our time and not getting paid for it.)
#ChronicHeadaches #ChronicIllness #ChronicMigraines #ChronicPain #Fibromyalgia #Agoraphobia #Anxiety #MyalgicEncephalomyelitis #Spoonie #spoonielife #CrohnsDisease #Endometriosis #RaynaudsPhenomenon #Dysautonomia #Vertigo #ChronicOrthostaticIntolerance #Podcast #creativecopes #ChronicFatigue #Migraine

Creative Copes Podcast • A podcast on Spotify for Podcasters

A podcast featuring two friends wanting to inform, educate and raise awareness into our ways of Creatively Coping with mental and physical restrictions. We want to add flavor and color into the bland landscape of chronic and invisible illness. Through wit, crazy and sometimes dark humor, we will explore how to channel our energy through creative means while searching for balance and flow to stay sane with dynamic disabilities. Love and Light ♥
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I’m new here!

Hi, my name is potsiedeb. I'm here because I have been diagnosed with POTs recently and it’s very scary and confusing. I’m hoping to connect and share advice and support

#MightyTogether #ChronicOrthostaticIntolerance

2 reactions 3 comments

I'm new here!

Hi, my name is Ace_of_Hearts. I'm here because I have chronic migraines and, though I've never been officially diagnosed, I am sure I have anxiety and depression. I'm on medication for both, but have never gotten an "official" diagnosis. I am also thinking I have some kind of chronic illness because I never have energy, have chronic pain, intolerance to being upright at times, and brain fog. I'm not sure if it's chronic fatigue/ME, POTS, fibromyalgia, or a combination of all three. I've had a weird time since high school and I'm looking for ideas for how to function as someone with chronic illnesses.

#MightyTogether #Anxiety #Depression #OCD #Migraine #MyalgicEncephalomyelitis #ChronicOrthostaticIntolerance

2 reactions 1 comment