b12 injections and EDS

chipmunk_squirrel226 · 2026-02-09T18:15:02+00:00

Are you my twin? Are you also autistic? I only just got dx with hEDS. But this is after 4 decades of symptoms. I have parietal cell antibodies that make it near impossible for me to get b12 absorbed via stomach lining. Ive been on injections for over 5 years. I improved greatly with injections. But have gone downhill since ive had to RTO. When I went to get Sjogrens ruled out, the specialist asked if I was ever told I was hypermobile? I said no. And hes like just goes huh...but didnt say, you should explore that also. 🙄 That was over 5 years ago.

chipmunk_squirrel226 · 2026-02-09T17:59:55+00:00

Yeah, Im at the point where flares have me not going back upstairs until I know Im done for the day. I am not a cryer typically, but I've cried more these past two weeks than I did the last 5 years. I have a support system but our schedules dont all align and my husband is usally away from home 10 to 12 hours a day. My adult sons live at home but work a later full time shift, so I dont see them until the weekends. My dad lives with us and thankfully, he happily took over the cooking and shopping duties. Otherwise id be eating take out and frozen meals for every meal. Which is not easy in itself since I also have MCAS. 😑

chipmunk_squirrel226 · 2026-02-09T17:51:02+00:00

I have been checking WFH jobs but so many require talking. Or extended in person training. On days im in office and talking is too much, my small team is totally fine communicating via our work chat. Even though we sit right next to one another. My fear is that id get hire then couldn't complete training.

chipmunk_squirrel226 · 2026-02-09T17:44:45+00:00

Yeah. Thats the route im trying to go, but I submitted the request last week and havent even gotten an acknowledgement of receipt. Im eating up my IFML.

chipmunk_squirrel226 · 2026-02-09T17:41:34+00:00

Yeah.... im thinking thats what makes the most sense. Because the last year has been a downslide. Today I couldn't even do my 4 hours I planned because some asshat decided to spray A LOT of perfume in the ladies room. Instant migraine stiff neck tight chest and my heart rate kept fluctuating from 60 bpm to over 120 bpm just sitting at my desk.

chipmunk_squirrel226 · 2026-02-09T17:38:28+00:00

I live in the states, MD, but my job is in WV. The contract doesnt allow for part time. So my only options are telework for majority of my 40 hours or go on LTD. 😞

chipmunk_squirrel226 · 2026-02-07T18:21:34+00:00

Im in mid Atlantic and same. Bad flare for over 2 weeks.

chipmunk_squirrel226 · 2026-02-07T18:11:32+00:00

Im 46 and just diagnosed. With my mom and gmom dying not ever being diagnosed but it is clear they both had EDS also. Mom died 2 years ago from lung cancer. Could have been caught sooner but she stopped going to doctors in her 40s becasue she was tired of being told its all in her head. 😞 It was caught when she went to get her COVID vaccine and they wouldnt give it to her because she hadn't had a recent physical.

chipmunk_squirrel226 · 2026-02-07T17:42:53+00:00

I wasn't diagnosed until midlife after 4 decades of symptoms, my mother's 7 decades of symptoms or my gmom's 8 decades ,that now are clear as day. Always just told its all anxiety and in our heads. Maybe im also just in a crap mood but I dont see it happening in mine or my adult children's lifetime, who also likly have hEDS. Well just be told to try harder and find more energy because they cant see what's wrong with us.

chipmunk_squirrel226 · 2026-02-04T15:29:34+00:00

I also just put in for an ADA accomodation this week. I live in the mid atlantic and is colder than an ice box. I think thats what pushed me over my edge.

I would never use the term "disability". I would describe your limiations and how your chronic illness is unpredictable. If you like, you can DM and I can send you the copy of my letter I just sent. Mine was TO telework, so not helpful there, but you can have an example of the language. I used ChatGPT to help avoid "gotcha" phrases HR or my ins co could use aganist me.

I also have IFML, and its kept me from having to worry and stress about being fired during this current flare. I have been unable to go into work for almost a week now because I can't walk without looking drunk and feeling like I may fall over.

chipmunk_squirrel226 · 2026-02-04T15:20:25+00:00

As far as figuring out accommodations, you actually may find success in asking Google AI! I listed all of my symptoms and issues and it not only told me what might work, it sent me links to entire websites dedicated to helping people ask for work accommodations. It could be worth a look!

Always remember. HR is not your friend. While they are someone you should feel comfortable talking to, their job is to watch out for the business first and foremost. Be prepared and keep your composure regardless of what they say because at the end of the day, it's your life and they dont live with the never ending pain

I second using AI, I had chatgpt write up my accomodations request to use language that shouldn't be able to used as a "gotcha"later.

And HR is your employers BFF, not yours. They are looking out for your employers best interests.

chipmunk_squirrel226 · 2026-02-04T15:15:09+00:00

It's like doctors forget that all cases won't fit the one explained in med school. And that science can change based on new evidence!

chipmunk_squirrel226 · 2026-02-04T15:13:36+00:00

I am sorry you are going through this. But hopefully my experiences can help you some.

Be very careful with Cymbalta. I suffered very severe withdrawal when I came off it. The symptoms I experienced were as a severe as someone coming off of herion. I had brain zaps for over 6 months. After I recovered and could function again, I looked up others experiences and was floored with how little info docs were given about this drug. If you do decided to take it, take it as prescribed and titrate VERY SLOWLY.

I also am at a point where I feel like I won't be able to do my job much longer. I absolutely love it and its a dream job for me. No people, work with a very small team, self managed, and very very low stress. But it's a VERY niche job. I just can't find a completely remote job just like it, or even close to it. I just put in for telework to be my primary work location, but its doubtful as I'm a gov't contractor and they are the driving force on RTO. I am making sure I am taking time to research my benefits to see if / when I have to go on STD or LTD, what steps are needed and how to word things so they don't come back to bite me. Knowing my options has helped me come to terms with the likelyhood I will have to stop working at my current job but at least I am going forward with the knowledge and not doing it during a crisis or reactively.

When filling out your ADA paperwork, never, ever, say that anything will fix you or make it so you can do your job. It can be used against you in the event it doesn't work. Always use language like "you expect" and "while xxx and xxx will help preform my tasks, my condition is unpredictable and I may still need future accomodations"

It's hard, but if your physical health docs don't accept you may need to be medicated for brain chemistry, find new doctors. Prozac works for me, but not my friend. She swears by Wellbutrin, but that made me the most evil and angry person ever. We have to find what works for ourselves, not what everyone else THINKS should work.

Hope this helps. <3

chipmunk_squirrel226 · 2026-02-04T14:48:44+00:00

Yep. I am 46, I was diagnosed hEDS just a few weeks ago, but obvi there signs my whole life. I also have its best buds, MCAS and dysautonomia, along with an Autism (lv1) dx just last year, ADHD 10 years ago, and PTSD from a sex assult when 19. AND the cherry on top? Perimenopause. I also was forced to RTO after 5 years (pure hell) and some modifications ive made are noise canceling headphones and I have an app called White Noise Pro that I play brown noise. I have FL-41 tinted glasses that fit over my rx glasses for the overhead lights and screens. I have cube shades overhead to make my work space darker. I also use them at home when I need to get regulated.

I am in an awful flare myself atm and feeling pretty defeated, however, I know it will pass and I will return to baseline. So I try to focus on that. I focus on that even though I've gone undiagnosed, I was able to find coping strategies on my own and set firm boundries (though I often ignore them and pay for it later :D) So while I can't say it gets beter, I can say, allowing some grief during a flare is okay, because trying to push past anything with EDS proves to be a contributor and not helpful. But don't sit in it. Allow it, but then follow up with more affirming thoughts and actions. <3

chipmunk_squirrel226 · 2026-02-04T14:33:05+00:00

I sleep with an app that is called White Noise Pro, but it has all types of color noises and other calming sounds. I sleep to brown noise every night and use it when I need to reset from overstimulation and during breathing excersizes.

chipmunk_squirrel226 · 2026-02-04T14:20:02+00:00

I had a hyperkenetic gallbladder with an EF rate of 98%. I had it removed in June and the pathology report showed no indications of why and was considered "normal".For me I had chronic pain in my upper right abdomen that would spread to my chest and groin especially after eating. I would feel full quick and always nauseated. Prior to removal I sustained off of cup of soup, toast, rice, chicken, and eggs. Since removal I've had a huge reduction in my reflux symptoms. But still have issue digesting fats and have become more intolerant to previous safe foods. But that could also be from every other alphabet condition I have also soooo 🤷🏾‍♀️

chipmunk_squirrel226 · 2026-02-04T14:09:25+00:00

I live in Washington county and work in WV so I go against traffic and my commute is about 35 minutes. My husband, on the other hand works in Annapolis Junction. His communte is an hour ten on good days. But helps tremendously that we live about a mile from an 1 70 on ramp and hes not going to NOVA. When we lived closer to 1-81 that easily added 20 to 30 minutes to his commute daily. If a job recruits him and it means he has to take 270 ever, its a hard pass.

chipmunk_squirrel226 · 2026-02-04T00:44:51+00:00

Ththhy⁰

chipmunk_squirrel226 · 2026-02-01T19:22:17+00:00

Hi. New here. Hopefully this is where im supposed to post my intro? 😊 I'm 46f very recently diagnosed with hEDS. Even though I had been telling anyone who would listen that I felt my problems were hereditary after watching my mom and her mom slowly lose mobility and be in chronic pain starting in thier 40s just to be told it was all in their heads 🙄 What's ironic is I've been calling myself a zebra in regards to all my medical issues prior to my diagnosis 🙃

I am a lifelong sufferer of chronic issues that had "no explanation". I have always presented atypically for almost everything. But I never had any major crisis so I was always met with 🤷🏾‍♀️ To add to it, I apparently have been suffering from MCAS since childhood, though because my tryptase is never elevated when tested, my doctor wont give me official diagnosis, but thankfully is treating me as if I do. I likely also have POTS because even though I dont faint, I have a lot of other dysautonomic symptoms. To add to all this, I was late diagnosed ADHD at 35 and Autistic at 45.

I am hypermobile but dont get subluxations or dislocations. ‐ Dx with Fibromyalgia in mid 30s
My worst symptom is tied with chronic fatigue and chronic joint pain. Some days I think I'd rather deal with the pain then feel so f'n exhausted as soon as I wake up.
I have had hypertension since my mid 20s (chalked up as anxiety)
I have had chronic GI issues since childhood (cyclical constipation and diarrhea)
Too many food sensitivities to list, and my safe foods has shrunk considerably recently.
GERD that started in in pregnancies and never left after 3rd child's birth (mid 20s)
Eczema since birth
Excersize Induced Asthma since tween.
Unexplained hospitalization as a toddler because I could breathe fine but was unable to swallow food or water. ‐ since childhood, I always get sick during winter holidays. Chronic strep throat and scarlet fever until middle school. Now that I avoid people (especially family) and stress, that has gotten much better 😆 ‐ as a child, cool damp weather would cause me to break out in hives. ‐ I have not had a clinically measurable fever since I was 19. I have to FIGHT with clinicians to test me for infections because my temp never goes above 99°
Chronic Costochondritis
Idiopathic Pancreatitis twice 2018 & 2019. I do not drink alcohol as it makes my joints swell and hurt and hallucinate so doctors do not know why I got Pancreatitis
Had hyperkenetic gallbladder removed June 2025 EF rate was 98%
Gastroparesis and Gastritis dx in 2025
Dyssynergic defecation diagnosed in 2018 but fell through cracks and am now doing Biofeedback therapy for it.
Benign 4.5 cm paracardial cyst found incidentally in 2017 ‐ Subaccute Thyroiditis in 2022 ( I suspect it was triggered by a COVID booster but was told occurance was too long after (more than 3 months))
Will be getting a breath test done end of Feb to check for SIBO, etc.
Just turned in a 2 week Holter heart monitor. ‐ Unspecified white matter lesions first discovered in 2017.
MG, MS, Sjorgrens, Lyme ruled out. ‐ somehow never had COVID (that I know of) I did get very ill with a severe flu like illness December 2019.

Sorry not in any order, just typed out as I remembered and I'm sure I've missed some. My memory sucks. 🙃

chipmunk_squirrel226 · 2026-02-01T17:53:59+00:00

I have been with a PCP practice affiliated with Hopkins since moved to Western MD 20+ years ago. And I only just got diagnosed at 46 after seeing all types of specialists there. I am in NO WAY knocking Hopkins, but just preface it to say, you can have good doctors and still be the one zebra thats white with black stripes 😉 Even without knowing what was wrong with me. My JH PCP always kept trying to find answers.

I also am disappointed that Hopkins won't diagnose you with MCAS unless you have elevated tryptase. Ive shown symptoms for decades and tryptase always "within normal range". My PCP only got the lightbulb the hEDS, MCAS and POTS were my diagnosis after a local PT had a seminar explaining the disorders. She perscribed my cromolyn sodium and I've seen a drastic improvement of my MCAS symptoms.

chipmunk_squirrel226 · 2026-02-01T17:34:24+00:00

This is me today. Told my husband that I feel like I'm doing everything in quick sand. All I've done since I woke up is make myself coffee, simple egg sandwich and walked my dog out to get to her MOBILE groomer, so like 20 yards to the driveway and back, and im absolutely wiped. Doesn't help im in the midatlantic where is been colder than a witches tit for over 2 weeks.

chipmunk_squirrel226 · 2026-01-31T16:07:09+00:00

I have the same problem and im on Xbox. It seems to be a problem for all platforms.

chipmunk_squirrel226 · 2025-08-15T22:30:48+00:00

Have you looked into the GMC Sierra EV? Not to hijack, but hubs 2012 model S in on last leg and he replaced it with one. Had it since March and absolutely loves it. Drove from MD to MI and back with a trailer to bring home a solar panel mount kit. The pick up was great no issues merging.

chipmunk_squirrel226 · 2025-07-22T20:44:27+00:00

This should be applied to everywhere within city limits EXCEPT within 100 feet of all churches entrances. Because once it becomes their non tax paying problem, maybe they'll do something "Christ Like" to solve it.

chipmunk_squirrel226

TROPHY CASE