I'm new here!
Hi, my name is Caitlyn. I'm here because
A little history: I’ve had GI problems for my whole life, yet only first started seeking care when a newer problem arose in 2006. Then after 2017, I just didn’t put in time for my health since college courses and work were my priority.
However, recently, I started investing my time to my health because there were too many problems interfering with every aspect of my life and having gone unaddressed for far too long.
I’ve been trying to track / manage my pain and fatigue; and lately my significant other has been commenting negatively about my frequent bathroom use. Recently I attended a workshop on nutrition relating to one of my conditions which made me see more urgency in getting my GI issues better managed. Then I’ve started a headache program that indicated a link with GI issues to headaches.
But I spoke with a doctor yesterday, covering for my primary provider; she wouldn’t let go of this idea that my symptoms were related to Covid or long-Covid, even though I clearly stated these issues have been ongoing since 2006. She wouldn’t refer me to a specialist either. So end result: she said to try over the counter medication (again) and to do the FODMAP diet, which would be easier to accept if I wasn’t financially restricted getting groceries for 2 people and the condition/space of my kitchen was better for 2 very different diets.
I’m just so tired of having to track, monitor and be aware of so many things relating to my health - then also having to do this for other areas of my life. There are so many variables; too many in fact!
**Does anyone have any recommendations on how to make adjustments and tracking more manageable when there are so many symptoms and variables to track?**
I have a pain journal, but I’m finding it hard to organize it effectively to track and monitor all these various symptoms and conditions (thanks to ADHD overwhelm). Could really use help or tips on what has worked for anyone else who has had to make a lot of adjustments for various conditions in a relatively short span of time - I just started getting care and treatment for multiple conditions this May, and primarily have focused on pain management, ADHD, and PTSD. #JointHypermobilitySyndrome #Fibromyalgia #ADHD #ChronicOrthostaticIntolerance #ChronicFatigue #ChronicPain #ChronicIllness #IrritableBowelSyndromeIBS #HypermobilitySyndrome
With the internet full of not-always-helpful information and a condition as complicated and misunderstood as migraine, finding useful and accurate resources about this neurologic disorder can feel like a fantasy quest without the feel-good resolution.
That’s why we asked our Mighty community to share their go-to places for learning more about migraine. Most people who responded shared that although it may have taken a long time to find the right medical provider, they can usually turn to their doctor for information about their condition.
What or who has helped you learn more about your health conditions? Let us know in the comments!
💚 Listen on Spotify: open.spotify.com/episode/2AVLZVrqPplZYXCExlof4q
🍎 Listen on Apple Podcasts: podcasts.apple.com/us/podcast/migraine-advocacy-for-beginner...
📖 Read the transcript: Migraine Advocacy for Beginners
#ChronicIllness #RareDisease #ChronicPain #Disability #MentalHealth #Parenting #Caregiving #Cancer #BorderlinePersonalityDisorder #Fibromyalgia #EhlersDanlosSyndrome #JointHypermobilitySyndrome #Migraine #POTS
I'm starting a new job and I already experience a lot of pain so I'm looking for tips and tricks to not feel worsening pain after being on my feet for 12 hours.
This is just a short post to show my gratitude for your patience, support and understanding while I have been experiencing health challenges that have caused me to not post as much as I would like to, and usually do. As I’m sure you’re well aware of, living with chronic health conditions brings many challenges and I know that you will all be able to relate to the feelings of wanting to do something and actually having the physical ability to do it. Thank you all so much, I hope to be back soon. 🧡💙
#FunctionalNeurologicalSymptomDisorder #FND #fndaware #FNDAwareness #Fndlife #ChronicIllness #ChronicPain #JointHypermobilitySyndrome #BackPain #MentalHealth #Anxiety #Depression #Migraine #Spoonie #Selfcare
My story -
I grew up in the 80s/90s where being “double-jointed” was just a weird quirk/party trick. Well, the women on both sides of my family were affected pretty hard by the hypermobility.
I was 12 when I had my first ever dislocation (and first signs of POTS). It was summer and my house was unairconditioned in Texas. I was helping my mom with dishes when I started to feel slightly dizzy, so I held onto the counter-top.
When I woke up after fainting, half of the dishes were broken on the floor around me, my mom was crying, trying to wake me up, and my elbow hurt. I was taken to my PCP, who had no idea what was wrong with me, but took xrays of my elbow and suggested that I drink more water.
And so, began my relationship with different doctors – specialists, primary care, whoever I needed to see, I would. But, besides being anemic, dizzy/prone to fainting, and hypermobile joints, no doctor had any clue what was going on with me.
Flash forward to age 28(no, really, 28), when I’m working for an established optometrist, he noted that I hyperextended my knees when I was standing tin place; he recommended that I see a rheumatologist/cardiologist because his wife and 2 children had vascular EDS(which if you know ANYTHING about EDS, you do not want vascular EDS).
So, I went to their specialists and was diagnosed with hEDS, POTS, Ankylosing Spondylitis, bursitis and inflammatory arthritis – after years (as in 10 years without any sort of diagnosis) of bloodwork, CT scans, MRIs, etc. My doctors then placed me on a host of medications, including a TNF inhibitor, which essentially made my immune system go bye bye – which my doctor elected to begin 2 weeks prior to the big shutdowns due to covid in March 2020.
When covid began, we had a host of friends that didn’t take things too seriously with restrictions, but understood that we(my partner and I) had to because of my new health findings. We didn’t have to worry about going to the stores because of grocery delivery options and restaurant delivery and our friends at that time would also bring by dinners, etc, since we couldn’t go out. But, empathy fatigue is real. After about 2 months, our “friends” started going back out again(Texas did not take covid seriously, at all) and we were kind of left behind.
I still have no immune system, cannot go to concerts, clubs, etc – which is starting to weigh heavily on my partner, who loves interacting with other humans. But those "friends" are all gone now and the loneliness of
My life looks completely different than I thought it would at this point in my life – I was an avid roller coaster enthusiast, but I know that this part of my life is behind me, along with most exercise, and my sex life (what sex life?!) – but I’m pushing through and trying to make the best of my life as it stands right now.#AnkylosingSpondylitis #Bursitis #ChronicPain #Depression #EhlersDanlos #JointHypermobilitySyndrome
I've been having episodes of low blood pressure. Really low. Like 77/54. The top number is often below 80. But then, I think when I'm in pain, it gets high. Like 148/104. I'm scheduled for autonomic testing next month. Does this sound familiar to anyone?
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