Discover and read the best of Twitter Threads about #NEISvoid

Most recents (24)

The good news: my symptoms of fatigue, fainting, low BP, GI issues, and brain fog aren't due to blood flow issues to my brain. And my nerves are mostly intact. 1/5
The bad news: this means all the above symptoms are secondary, not primary issues. Aka they're not caused by primary POTS, but they're secondary symptoms bc of #MCAS. 2/5
And there are no approved treatments for #MCAS specifically for the disorder. And the top specialists don't take insurance. And there is a whole lack of research. So I've essentially exhausted all the treatments I can afford. 3/5
Read 5 tweets
We don't talk enough about the medical gaslighting that happens in the natural/holistic/alternative medicine world and how incredibly destructive it is for #disabled and #ChronicIllness folks. #NEISVoid Thread 🧵
Today I saw a new massage therapist who specializes in neuromuscular work, hoping he could help with muscle spasms in my neck and jaw. He did, but here's why I will never go back to see him: First, he looked at the history form I filled out and out of twelve medical conditions 2/
I checked, he zeroed in on "anxiety." He told me at length about the 9 anxiety muscles he, and only he, knows how to release to make anxiety go away. I never said I wanted help with anxiety. He ignored my #EhlersDanlosSyndrome and didn't listen when I explained what massage 3/
Read 21 tweets
@kaiser is cutting the perocet i’ve been taking for 6 years since injuring my spinal cord. i have endless neuropathy and intense muscle spasms every single evening. now, my lumbar L5/S1 is acting up and i have pain from my right back to my ankle. it’s like walking through fire.
every single day of the last 6 years i’ve thought of suicide.

every. single. day.

but i’ve always had hope. that something would turn around. some sort of medical miracle would happen. i don’t have that hope anymore. i can’t face a lifetime of excruciating pain. it is hell.
i don’t understand why people have to be so cruel? because the sackler’s forced a drug on people who didn’t need it, now the people who really do need it, like me, no longer have hope.

these tweets do not mean i’m suicidal. i am not.
Read 6 tweets
On unsolicited advice for chronically ill folks: Why do we get so upset when you recommend a book, diet, vitamin, exercise, essential oil, tea, meditation, etc?

THREAD. 🧵 #NEISvoid #ChronicPain
1. Because it’s condescending. It suggests that we haven’t done our own research, or aren’t smart enough to consider these ideas. (Anyone recommending yoga or veganism, this is for you. It’s not like we haven’t heard of these things.)
2. Because it feels like victim blaming. It insinuates that it’s our choice to be sick because we don’t want to try new ideas, or we’re just too lazy or closed-minded to do so.

(Truly, if our conditions had easy & accessible cures, we wouldn’t be sick!)
Read 14 tweets
I'm beginning to think I'm doing this disability thing wrong. Every disability scale I read drops "ability to work" BEFORE "ability to do acts of daily living.
In order to work 4.5 hours a day from home I can no longer:
do grocery shopping, cook, clean, tidy, change the bed...
shower daily, look after my pets, do life admin, socialise, stay in touch with relatives meaningfully, get haircuts, pick up my prescriptions....

I can still work. But I am dependent on my partner for EVERYTHING else.
I don't think disability scales were written by people who realised the crushing reality of living as a slave under capitalism.
Read 6 tweets
[Covid vaccine/side effects, appetite]

So lack of appetite following Pfizer doesn’t seem uncommon. But I can’t seem to find any info on others who have experienced it for such a prolonged period.

It only improved for me very very slightly.
[Covid vaccine/side effects, appetite & food]

I haven’t had a craving in 4 weeks. I don’t look forward to food. No “ooh I could order my fav food later.” It’s just a thing I do now.

I still feel hunger. Can recognize that food tastes good, but there’s no compulsion to eat.
[Covid vaccine/side effects, appetite]

I mean I always knew I’m the “if there’s a weird side effect I’ll get it” person, but this...

Anyone else experiencing prolonged appetite loss after the Pfizer shot? Maybe my fellow #pwme #mecfs or #NEISvoid folks?
Read 6 tweets
Today's #MyEDSChallenge is about doctors/nurses.
Epidemics, Book I, of the Hippocratic school says to doctors: "Practice two things in your dealings with disease: either help or do not harm the patient". Every chronic illness patient has seen doctors who have violated this. 1/6
First there were the doctors who didn't even bother to see us. Next the ones who saw but didn't care enough to do anything. After that came the ones who didn't know what they were doing but did it anyway, our bodies & minds be damned. 2/6 #MyEDSChallenge #NEISVoid
Later came the doctors who thought they knew best & asked us to not research about our own bodies. We were tossed & turned through CBT & GET repeatedly until our bodies & minds broke. If we are lucky & our stars align, we may find those rare doctors, #MyEDSChallenge #NEISVoid 3/6
Read 6 tweets
#NEISvoid, #ParentingwithPain chat is this Saturday, 15 May, 6 - 7 PM CET. You can find the #twitterchat guidelines:…
Q1: How do you prepare your child(ren) for the uncertainty that chronic illness causes in your life (cancelled plans, for ex)? 1/3
Q2: Have you had to take your child(ren) to your medical appointments? How did you handle it? Were they overwhelmed?
Q3: If you are in a relationship, how do you divide your parenting tasks? Is there any resentment from your partner on how this is done? 2/3 #ParentingwithPain
Q4: How involved are you in your child's day to day activities (meal prep, school run, homework assistance, etc)?
Q5: For parents of older children, has your relationship gotten better or worse as your children grew up?
#ParentinwithPain #NEISVoid #twitterchat
Read 4 tweets
Positive from a negative:
If you’re living #NEISvoid, #cfsme, or #LongCOVID life - and you have boty anxiety and a smart dog, #ServiceDog, #ESA, or #SDiT, here’s something that you can actually use as a way to benefit from a flare🙂
When I was stuck in bed with hardcore #LongCOVID flares, my SD could scent that I was sick, and would stay nearby...usually on the bed.

I’d luckily already had an “in case of bad days” setup to care for her, but I was often so sick I was only getting out of bed for the bathroom.
Being largely #poodle/just smart in general, she got used to the idea that “mom gets up, it means that she’s going to the bathroom.” And she would get up and go, often ahead of me, if not with me.

I DEFINITELY realized that this was a learning opportunity🙂
Read 5 tweets
🧵1/ Every day this month I'll add a different piece of ME/CFS biomedical research to this tweet so that by the end of #MEAwarenessMonth there'll be a nice long thread of biomedical research papers to keep or share. First up:
…… #MECFS #pwME
🧵2/ 'Myalgic encephalomyelitis/chronic fatigue syndrome patients exhibit altered T cell metabolism and cytokine associations', Maureen R. Hanson et al #MEAwarenessMonth #pwME #MECFS #research #MedTwitter #MedEd…
🧵3/ 'Distinct plasma immune signatures in ME/CFS are present early in the course of illness', Mady Hornig et al #MEAwarenessMonth #pwME #MECFS #researchpaper #MedTwitter…
Read 28 tweets
Aww, crap...I screwed up.

Reminder for anyone ELSE in the northeast w/severe bug bite reactions...*mosquito season is open.*

If you’re fighting your body on getting those deliveries in, remember that getting them in before dusk/a potential bite is MUCH better.
Of course this happened w/the big delivery (the only water I can drink, until I see if a reverse osmosis system works), when I had to use the hook to keep the door open.

I’ve been so busy thinking of setting up🦟 window netting that I forgot about safe times to open the door🤦🏼‍♀️
@DanDanNoodles78 “ISS SQUITOS”😩
Read 4 tweets
#NEISvoid, recently found out that Singulair is available in generic form...I had the familiar “it helps but I’m having untenable reactions to fillers” w/the original. Has anyone had issues with the original and found success w/a generic?
This was years ago, before #MCAS set in (especially hardcore). But I still had an issue with fillers.

I need to look up the brand/possible generics, but I REALLY wish I knew what the problematic filler was. Even if Singulair was a different brand, I often react to TEVA meds🧐
I wonder if they (TEVA) often contain something that has a high incidence of reactivity? I’ve seen several people with a TEVA issue. I’d really love to get to the root of it.
#ChronicIllness #Mystery🧐
Read 4 tweets
Our research on #HigherEducation #inclusivity for students with #ChronicIllness is now published by @JDisSoc!!

We discuss stigma towards chronic illness as a #disability, and aim to influence HE practices.

Pls rt! 🎓
@JulieH_Psyc @EmHaz_Psy
It will be open access soon, but if anyone who doesn't have an institutional login would like to read the paper in the meantime, then I'm very happy to send you an e-print
The above paper might hopefully be of interest to some of you!
@TabouMagazine @DisInHigherEd @DisabledAcadem @ChangeDisabled @chronicinclude @chron_ac @AbleismAcademia @EnabledInAca @KeeleUniversity

And @CDSLeeds, your archives were really helpful🙂
Read 3 tweets
one of the easiest ways to annoy me. Firstly, it’s none of your business. Secondly, it implies that a situation is so black & white that money will just fix it/ make it disappear. Thirdly, your first response when you hear someone’s trauma is.. GET THAT BAG SIS? Wow very telling 13 comments on one post, all asking if I sued
And fourthly, it makes me feel as though I am just here for your entertainment, and as though my story needs to have some ‘happy ending’ kind of conclusion in order for you to feel good. #NEISvoid
Read 3 tweets
Megathread: 1 Trying to unpick reasons why people disengage from those with #chronicillness such as #ME My thoughts below. Taken a couple of months! Feel free to add #neisvoid #pwme #friendship #relationships #MyalgicE #family #ghosting #carers #Grief #DisabilityTwitter #MECFS
2. Fear. They would rather not contemplate how life can be so suddenly derailed. They cannot bear to think about suffering and don't want to face up to such realities
3. Because they love you they find it too hard to contemplate your suffering so shy away from it
Read 16 tweets
I looked at a calendar this morning and realized that it’s April 3rd. Thread.

I have #LongCovid: more details of my story are in my pinned thread, linked below. My constant migraine started when I woke up on Ocober 3rd, so today is my six-month anniversary. Lots of feelings. /1
@bennessb in her as-always infinite wisdom somewhat prepared my for this by asking earlier this week if I mark chronic illness anniversaries, and how. Then, I mostly thought about how I interact with the anniversary of my knee surgery, which returned me to walking and dancing. /2
Like I said, I had a lot of feelings on looking at April 3rd on a calendar this morning. But I’m choosing to (try to) focus on how much better I (currently) am than I was in the fall, and how much less pain I’m in day to day, and how much more I can do. /3
Read 10 tweets
Passing the buck in complex chronic disease is common #MedTwitter. There is no, single specialist who can help people with these multi-system issues: it's up to the GP to learn the best treatments, testing, & management advice. A RESOURCES🧵(1/13 #longCOVID #PASC #MECFS #NEISvoid
Moreover, we will see more & more of these patients in clinic post-COVID, and passing them from specialist to specialist ad infinitum is not care. (2/13)
(2/) #MedTwitter #MedStudentTwitter #longCOVID #PASC #MECFS
Many (though not all) people with #longCOVID will meet the criteria for #MECFS. Here are some resources I on this often post-viral disease. I hope you find these valuable and will them share widely. (3/13)
Read 13 tweets
Didn't get an award, which is ok, but it took so much energy to apply. Disabled scholars get significantly less grants, and I bet it is largely due to the fact that we are physically unable to apply to as many as our nondisabled colleagues #AcademicChatter
Comparing number of awards recieved vs those one applies for may be an interesting metric for #DisabledinSTEM as I know I apply for far fewer than most people. @AcademicChatter @AbleismAcademia
I have a stack of grants I'm interested in applying for, but I can pretty much exclusively write 2-3 small (under $4000) ones a year. Anything on the larger side would probably be 1 or 2 a year without the small ones...
Read 6 tweets
One issue that I have with the current approach to vaccinating chronically ill and disabled folks is the simplistic understanding of both specific conditions and possible COVID-related impacts. 🧵
Some of us may not necessarily be more likely to die but may be much more likely to experience serious, longterm disability-compounding complications.

As usual, #EDS provides a great example of why the current approach is flawed.
Doctors hear EDS and think "just joints". Those of us with EDS know we also experience dysautonomia, mast cell dysfunction, immune irregularities, cardiovascular issues, and CFS/ME/longstanding fatigue -- among other things.
Read 14 tweets
One year ago today, I went for a run, like I did most mornings. I came back, made oatmeal w lots of cinnamon. My husband walked into the kitchen and said he could smell my breakfast from the bedroom.
I could not smell it.
That was my first morning w COVID19. #1Year1Virus
It started with some post nasal drip, some aches, skin sensitivity. I was slightly chilled but felt warm to the touch. I was nervous but heartened - no cough! This must be a cold. T said his throat felt funny the day before and it was a little more bothersome today.
The next day, the second Saturday of California’s Shelter in Place order, I got on my first Zoom with friends for a mimosa brunch. This was one of my only zoom hangouts this entire pandemic.
We poured champagne and I realized I was getting short of breath talking.
Read 43 tweets
Too many Drs act like if it doesn't show up on their test, I should just pretend like it's not happening. They must know that allergies and intolerances work differently, but they only focus on allergies and act like you can't have a bad reaction if you don't have the antibodies.
It's possible to have antibodies and not be allergic and it's possible to not have antibodies and be allergic. And intolerances don't create antibodies anyway. So why do they act like the allergy test is king?
If I eat something I'm allergic to, I end up in the ER cuz I
physically can't digest it. So why do they think I need to be told not to eat it? Why do they think that ridiculous bit of advice is going to solve all my problems. I'll be fine as long as I don't eat these foods I never eat cuz they can kill me. Uh, what's changed? #NEISVoid
Read 5 tweets
The problem isn't just doctors not knowing what symptoms connect to what diagnosis. It's also doctors not BELIEVING patients when they describe symptoms that aren't obviously visible. #NEISvoid
My doctor friend expressed confusion to me recently about the delay in my endometriosis diagnosis. "I just don't understand" she said. "Every doctor is taught that severe pain goes with endo. They should have made the connection right away".
But the issue wasn't doctors missing the connection between endo and pain. It was that they didn't make the connection between endo and MY pain- or more specifically, believe that the pain I was describing was actually as serious as I was saying.
Read 7 tweets
I've been ticcing so bad lately. I have primarily facial tics. They used to be so bad in ms/hs that I developed wrinkles from doing it so much. But I willed myself to do it less through sheer force of will, which obviously was difficult & exhausting, & by replacing them with- 1/5
different stims like combing my fingers through my hair (till I had a pile of hair under my desk) or putting on LOTS of lip balm. I also used to struggle with excessively scratching my scalp, which turned into picking my skin excessively, which I still struggle with greatly. 2/5
At one point I was even chewing chunks out of the tips of my fingers, as well as my tongue, lips, & cheeks. I really struggled with these bodily compulsions.

Lately my facial tics have come back with a vengeance. This increases my already awful facial/jaw pain. 3/5
Read 5 tweets
Ranty thread: I am so sick of this topic and tweeting about this topic but the baiting of #ME sufferers, continues. So for anyone who doesn’t know, and yes I am shouting, MOST PWME HAVE TRIED GET/CBT/EXERCISE THERAPY AND POSITIVE THINKING. OFTEN MULTIPLE TIMES 1 #pwME #MECFS
Most of us went into these ‘therapies’ with open minds and hearts. I was desperate to get better, I did everything I was told, I was so hopeful for improvement. As most of us find, IT DOES NOT WORK. In my case it delayed my subsequent improvement until I started listening 2
to my body and sleeping enough and resting. For many others, it made them much, much worse. This idea that pwME are resistant to exercise and helpful therapies infuriates me as we have almost all tried them! We are now resistant because we have first hand experience of the harm 3
Read 12 tweets

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