Sinéad
@spoonless_me
Followers
1,851
Following
835
Media
168
Statuses
4,812
dog lover • plant mad • software engineer • chronically ill • #PostVac induced #Polymyositis #SFN #POTS #MCAS #MECFS #LongCovid
Ireland
Joined April 2022
Don't wanna be here?
Send us removal request.
Explore trending content on Musk Viewer
Brazil
• 1302139 Tweets
Elon Musk
• 735973 Tweets
#BUS1stFANCON_KnockKnockKnock
• 325579 Tweets
Caitlin Clark
• 89467 Tweets
#GFRunTheWorldConcertD1
• 81308 Tweets
#WITHYOU_MV
• 62746 Tweets
GULF NEW SONG
• 54921 Tweets
Bluesky
• 50802 Tweets
#プレイバックガチャ
• 44933 Tweets
TEDDYTINT x POND
• 35717 Tweets
Djokovic
• 27710 Tweets
Gomita
• 27097 Tweets
札幌2歳
• 24149 Tweets
ドジャース
• 23608 Tweets
野菜の日
• 22058 Tweets
Stanford
• 17076 Tweets
Popyrin
• 16201 Tweets
JAMESSU FM IN QINGDAO
• 14929 Tweets
台風一過
• 13333 Tweets
SUNSET X VIBES WATCH PARTY
• 10693 Tweets
Pinned Tweet
I promised myself this year that I would open up more about my chronic ill health, and to spread awareness on how little support there is for those that suffer vaccine reactions in Ireland. So here it goes, my vaccine injury experience so far.. 🧵
27
63
269
I'm seeing many ppl, including celebrities, mocking ppl who are suffering from neurological tremors post covid vaccines.
My tremors can be so severe that I'm incapable of walking or feeding myself.
This is absolutely shameful disgusting behaviour. You're mocking disabled ppl.
122
442
2K
I met with 2 friends who I haven't seen in a year. They know that I've been sick for the last year & yet they never asked how I was.
Why does chronic illness make others so uncomfortable? I found it so weird that no one asks how I am anymore when it's such a huge part of my life
115
114
1K
One thing I've learned from the last two years - never trust your doctors. They can and will mess up. ALWAYS get a copy of any test results and check them yourself.
My rheum decided my positive myositis aabs were a false positive 18 months ago and never told me about them. 🧵
41
139
1K
Well my new GP just treated me like a con artist.
I've never seen a doctor get so triggered while reading my specialist letters.
It was clear as day how he views these illnesses.
I am just a burden to him.
I'm so very tired of being treated like this. 😩
65
95
1K
I got a neurologist letter today that states that their impression is that all of my widespread symptoms can be explained by Dysautonomia and Small Fiber Neuropathy following my post immunisation reaction from the covid vaccine. 🥺
FINALLY GETTING SOMEWHERE!
43
177
953
In the past few weeks, I've experienced significant improvements in my health in the areas of small fiber sensory and autonomic neuropathy, cognitive dysfunction, fatigue, and rapid muscle fatigue. It feels like I'm finally unraveling the mystery of my own broken body. 🥹🧵
60
81
888
I love wasting €300 and 6 hours of travelling to a private Long Covid clinic to only be offered antidepressants. 😡
I went for Metformin because I know it is prescribed there but the doctors are not aligned on what they prescribe. Absolutely fucking raging.
54
47
537
My dad is alone in hospital today. I'm his only child and I'm too unwell to be by his side.
He has been there for me for every hospital admission, and it breaks my heart that I can't be there for him today. 💔
This is such a cruel illness.
#LongCovidAwarenessDay
19
82
526
I met the nicest locum GP in my clinic today. He was SO interested in my vaccine reaction and wanted to hear about ALL symptoms?!
He stopped me as I was leaving and said something that no other doctor has said.
"I'm so sorry this happened to you."
Still crying 😭🥹
27
30
531
I love how my brain completely forgets the horrendous symptoms during a crash as soon as I have a good day.
It's like a switch goes off & I start convincing myself that I'm well enough for work again & can get back to living.
Calm down Sinéad, you've only had one good day! 😆
57
29
494
I never thought it would happen to me.
I was young and healthy.
I stopped living life 13 months ago.
I spend every day waiting for tomorrow, in hope that I'll wake up from this nightmare.
I fear for my future.
#VaccineInducedLongCovid
#LongCovidAwarenessDay
10
101
480
A loved one was admitted for a suspected chest infection at the weekend.
We have received the news that they won't be coming home. It's lung cancer and their organs are shutting down.
I won't be on here much until this is over. Hug your loved ones a little tighter today. 💔
45
11
371
I met my new POTS specialist today and he was lovely!! Finally getting a tilt table test and 24h heart monitor in the next couple of weeks.
He said it's madness that not one doctor has looked at my heart in 16 months.
The relief when you find a good one. 🥹
17
29
324
I'm both relieved that this opens up new treatments, and livid that he didn't feel it was necessary to inform me about MY abnormal test results.
He instead diagnosed me with fibromyalgia & discharged me from his care.
A simple retest could have changed my life 18 months ago 😩
10
12
314
Currently waiting for my tilt test in hospital and who walks past me? My FND neurologist!
I was SO tempted to stick my leg out and trip him. I've no control over these FND riddled legs. 🤪
26
10
307
My partner just returned from GP & mentioned he has been getting random palpitations lately. The GP recommended an ECG and cardiologist referral.
I went to a GP with tachycardic episodes of 140+ BPM lasting hours after my vaccine. I was told to stop looking at my Fitbit. Weird.
18
25
294
@GeoLouWill
Ugh I'm so sorry. I get from my GP "Sure you won't even notice your pain if you're out having fun!"
Nope, my disabilities are still very much there no matter how much fun I try to have. They literally have no idea what we're going through.😣
5
6
284
My neurologist told me I should be consuming 6 grams of salt a day but I'm finding it impossible?!
For anyone that consumes this amount or more, how do you do it??
I have electrolyte drops, tablets and salty snacks and still only manage about 3 grams.
#POTS
173
24
285
I have officially been diagnosed with the autoimmune disease Polymyositis.
My MRI showed evidence of symmetrical chronic disease in both thighs, which fits with PM.
Treatment will be steroids and methotrexate. 🧵
30
26
282
I found these positive aabs nearly a year later by doing a freedom of information request for my medical records.
I finally convinced my rheum to do another myositis panel recently, and guess what? They weren't a false positive.
Appointment in 6 weeks to find out what I have.
2
14
259
There once was a girl that made significant improvements in her health, so she decided to book a little holiday to celebrate being well enough to return to work.
Guess who has been in a crash for over 4 weeks & is now dreading the holiday next week?
This gobshite. 🙋🏻♀️😭
31
5
234
I was recently told my POTS that I developed 1 week after my vax injury was from deconditioning & was given an exercise programme. I was told I should do it even tho I experience PEM.
I was very lucky I found this ME community before that appointment, others are not so lucky 💔
@ahandvanish
My son went to rehab to improve his "deconditioning" due to his post-COVID POTS. Before he could go to school. After six weeks of graded exercise therapy, he's now housebound, semi-nocturnal, and needs a wheelchair to go to the doctor. He's 13.
96
428
2K
20
30
230
Just rang a GP clinic that has great reviews and they're taking on new patients!
Their GP is female and has a special interest in female health. I also nearly fell off my chair when they told me that they provide an IV hydration service!! 🤯
Please be a good one 🤞🤞🤞
14
10
225
I'm back to needing help with the stairs and being unable to do anything from a mild virus. My limbs are so weak.
I just deleted a draft where I planned to post that I was moving towards mild ME and was hoping to return to work in January.
I'm devastated. 💔
27
7
193
I had to cancel Christmas today.
Woke up to awful muscle weakness in my arms. My muscles have been visibly shaking all day and are now incredibly painful. My thighs are now heading in the same direction. FFS. 😣
Thankfully this cutie will be keeping me company. ❤️🩹
22
5
179
Officially have POTS! HR spiked by 80bpm and sustained for the full 40 mins. 😱 No wonder I'm still recovering.
Prescribed Midodrine and Propranolol. Anyone take these together?! I don't think I've seen anyone take these two together.
34
6
174
I haven't told my current neurologist about this, I wanted him to assess me and see if he came to the same conclusion. Thankfully, he believes I do have SFN and Dysautonomia.
Please be VERY careful with neurologists.
#MECFS
#LongCovid
#sfn
#dysautonomia
9
6
177
So, what sparked this positive shift? Nicotine patches, choline (alpha-gpc), and benfotiamine played key roles.
This will be a long thread, but I wanted to share my understanding of why these helped. Please let me know if you have any other ideas. 🙏
2
11
170
The appointment with new GP went well! She was respectful, empathetic and masked.
She's not too knowledgeable in this area but she was happy to read everything I gave her and I'm booked in for IV saline this week.
First GP visit that didn't make me cry in a long long time 🥺
14
3
167
Back from another delightful GP visit
- Neuro wrote to change my beta blocker to a selective one, GP said no, neuro should do it
- Requested a private referral for POTS, he said not until I get a BP monitor & if it's normal then no
- Told me I am very deceptive cos I look healthy
29
10
153
#TheNicotineTest
I could feel PEM kicking in yesterday so I put on a 3.5mg patch
Within a couple of hours I no longer felt poisoned & flu-like
On the left is an average night's sleep for me, on the right is a nicotine patch sleep 🤯
I'm going to do another round! 5.2mg today
23
15
146
It's been two weeks since my tilt test & I still feel like I've been kicked in the head. This test 100% caused more cognitive damage.
I just ordered a
#WhereIsMyMind
supplement stack that will hopefully help. 🤕
17
10
144
You might have noticed a trend in these tweets. My experience with doctors has been more traumatic than the illness that disabled me. If you are a doctor and reading this - please do better.
13
19
142
When you reach for a word, does your brain sometimes give you a word that is somewhat related to the word you were looking for?
I tried to say "Thursday", it took my brain four attempts to get it right.
"August.. No! Sunday.. No! Tomorrow.. No! THURSDAY!"
#WhereIsMyMind
🤦♀️
38
7
132
Last week, I transitioned from patches back to a higher choline dose + benfotiamine, and that's when the magic happened. It felt akin to taking that drug from the movie Limitless, with fatigue and cognitive dysfunction nearly vanishing within 60 mins of taking the supplements.
3
8
132
Being in this medical system is like being in an abusive relationship. I'm so tired of the gaslighting & gatekeeping
The worst part is having to sit there & take it cos there is a shortage of GPs, so I can't tell him what I really think of him. I can't wait for the day that I can
4
3
128
Trust me to start to black out once I got OFF the tilt table. 😆
An 80bpm increase in HR confirms POTS and I never want to do that test again! That was rough 😬
19
3
130
After 22 months of trying MANY supplements, this is the first time I've experienced such an incredible difference in how I feel. My brain is back. 🥹
3
4
125
I was diagnosed with
#FND
because my neurologist explained the Hoover's sign test to me incorrectly. When I was first ill, the right side of my body was weaker than my left. He asked me to lift my right leg against his hand, and he asked to do the same with my left leg🧵
11
25
123
I still have negative ANA, and normal inflammation markers and CK levels. I do have aabs for PM (PM/SCL-100).
I can't stop thinking about how many more people are in this community with autoimmune diseases being left untreated due to normal bloods. 😞
4
9
121
I miss the sea.
I miss adventures.
I miss working as a software engineer.
I miss being able to make future plans without the anxiety of wondering will I be well enough by then.
#VaccineInducedLongCovid
#LongCovidAwarenessDay
3
35
115
I was sad yesterday cos my nicotine patch wasn't helping my muscle weakness.
I thought my only aid was no longer working & I was going to continue to get weaker again.
I just took the patch off & realised I stuck it on backwards with tape so I was getting no nicotine. 😆 Phew!
12
4
116
@tarmac_xx
I had the EXACT same thing happen. I ended up coming across his Reddit account giving out that I ghosted him. He was off travelling the world and I was in hospital unable to walk... And I ghosted him 🤣 sorry I was too busy trying not to die to ask about your holiday!
3
0
113
I reached out to my rheumatologist again about my positive Polymyositis aabs & mentioned how my muscles feel horrendous without LDN.
He finally agreed to do more testing and I got my bloods done this morning. 🙌🧵
6
5
110
I would like to say a big fuck you to my two year anniversary today.
That's all I've got to say about it this year.
#ThanksModerna
11
1
103
When I asked about Metformin he joked "oh you want to be the first person in the world to experiment on yourself with Metformin, is it?"
Me: "Eh no, I got referred here to a doctor that I know prescribes it for Long Covid. Do you not communicate?"
No they do not. 😤
9
6
104
Heartbreaking to hear that another family in the same situation as Millie has reached out to
@TheChronicColab
for help.
We have no idea how many young women with
#MECFS
are being mistreated in NHS hospitals.
#BringMillieHome
#DontLetMEDie
0
37
102
I'm up to something. 👀
I'm hoping that it will at least help my muscles, hopefully it will help fatigue too.
Will report back in a few months!
18
5
100
#Dysautonomia
#POTS
#LongCovid
What treatments have helped you if you get both low and high blood pressure? I think I have both hyperadrenergic & neuropathic POTS going on and I'm concerned specialists in Ireland won't know how to treat both.
BP yesterday & today, I feel awful😩
39
16
99
I recently completed 5 weeks of nicotine patches, following a low-dose protocol of 1.75mg, 5 days on, and 2 days off. This was in response to a recent virus exacerbating my muscle weakness. Within hours, the patches began to alleviate weakness, some cognitive issues, and fatigue.
2
6
99
I regret giving my partner my magnesium glycinate and glycine supplements because he keeps raving about how great his sleep is now and I'm so jealous!!!
10
1
97
I'm home from the most amazing few days away. I wish I had this view to look out at everyday! It really helped my body to truly rest.
This weekend will forever be special to me, it was also where I got engaged. 🥹🥹
And yes, the excitement of getting engaged causes PEM. 😆
24
3
97
I had been taking choline before restarting the patches & noticed minor improvements, but nothing profound.
I discovered from Genetic Lifehacks that I have a genetic predisposition for choline deficiency. My body struggles to both produce it & convert dietary protein into choline
4
7
97
I believe I've had a choline deficiency for over a decade. I've always struggled with physical and cognitive fatigue, and poor concentration. I was told I was depressed even though I never felt depressed. My brain has never felt this energised and focused.
1
6
96
Hey! I'm just checking in to say I'm alive. I'm in PEM city at the moment after the funeral, but I'm not as bad as I thought I would be thanks to nicotine patches. 🙏
I'll be back after another few days of rest! Thank you for all the support in my last post 🫂 x
8
2
95
I also can't stop thinking about how many years would I have suffered if I didn't find those positive aabs myself and pushed for further testing.
Please always double check test results, my rheum decided not to tell me about my positive aabs 2 years ago due to normal bloods. 🙏
4
9
96
The connection between acetylcholine and B1 then became apparent—B1 is crucial for acetyl-CoA production. So BOTH precursors for acetylcholine were impacted?
I had never taken choline and B1 together. I also have nearly every symptom of both choline and B1 deficiency.
2
7
91
Benfotiamine at a higher dose remarkably reduced my SFN pain. I even regained the ability to sweat from my limbs and my hands & feet now prune in water! The nerves healing might be coincidental, but benfotiamine's impact on nerve pain, especially combined with LDN, is incredible.
5
8
90
The more I learn about Dysautonomia, the more I think I've had it for about 14 years.
I was told it was just anxiety, even though I didn't have anxious thoughts. My body would just go haywire.
It was also when I started developing allergies, low energy and digestive issues 🤔
7
3
90
Caught another virus a few days ago and barely got sick from it. Instead, my overactive immune response caused my neuropathy and dermatographia to RAGE, and my ANS is completely dysregulated.. again.
Back on a low dose nicotine protocol for the foreseeable! 🧵
12
6
90
I believe this is why I responded so well to the patches, nicotine mimics acetylcholine. Choline is an acetylcholine precursor, alongside acetyl-CoA.
I have been taking benfotiamine intermittently since April. An initial paradoxical reaction hinted at a B1 deficiency.
3
7
88
These sound sensitivity days make me so so sad. 😞 Every sound is torturing my brain.
I really wish I could give everyone who suffers with this daily the biggest hug because it just fucking sucks. 🫂
14
4
88
Final note: please be careful when starting thiamine. I triggered a two month crash from my paradoxical reaction, so please start at a very low dose to avoid this. Also take thiamine cofactors with it.
10
5
87
So I have low blood pressure?! That was a surprise! Regular readings of low 80s/40-50s. Of course they told me that's low but fairly normal for my age and being a woman, while HR recorded during these readings was 130bpm+ 😆
Got my referral though 💪
18
2
85
I've had 2 doctors laugh at me for seeing this specialist. Apparently he's a quack even tho he's the only doctor I've seen that keeps up w/ research, can think outside the box & can actually be arsed to try & treat this illness. You're a quack if you're a good doctor apparently.
1
8
86
Why did I think having five doctor appointments within two weeks (two appointments involved a six hour round trip both times) was a good idea?!
Oh this body is broken. 😬
Shockingly, 4/5 appointments went well & I was prescribed Valtrex!
Let's see if it helps with anything 🤞
16
2
85
Please be careful with B1 & choline. 🙏
I've spent the last 3 weeks in my worst MCAS flare yet. 😑
I reintroduced B1 & choline at a much lower dose a few weeks ago & seemed to be tolerating them fine.. until I started reacting to high histamine foods for the first time. ⬇️
17
10
83
I've learned to do my own gel nails! Not bad for someone with tremors eh?!
So far, I've learned how to make a decent flat white, cut and colour my own hair, and do my nails!
What else can I learn in preparation for moving to the mountains away from civilisation?? 😆
18
1
81
Am I completely recovered? No. POTS, SFN, mild PEM, and muscle issues persist. I forgot to take LDN for 3 days last week. My muscle and joint stiffness and nerve pain flared on day 3. But, I remain hopeful. Time is key, and autoimmune issues may still be at play.
1
4
80
Irish YouTuber/ author with neuropathy and blood clot issues after a Covid infection a couple of weeks ago.
Like the majority of ppl out there, she had no idea Covid could do this to you.
She has two young babies. Public health is failing us. 😞
IG: melaniiemurphy
1
36
80
Rheumatologist agrees that I more than likely have Polymyositis.
Need to get MRI of thighs before starting treatment but he agrees that we should try to treat it since I've responded to steroids previously.
Will see him again in 2 months to make a plan after MRI.
PHEW! 😭🤞🙌
20
4
76
I created a time-lapse video that shows what happens to my skin if I lightly scratch it with my nail.
This was a common vaccine injury symptom, I'm not sure if it is common with
#LongCovid
Anyone else a human etch-a-sketch?!
#dermatographia
33
14
72
We lost an incredible member of our family today, my mischievous and loving grandfather.
Soon we will lay you to rest at your favourite fishing spot where you can fish to your heart's content. 🎣
Ar dheis Dé go raibh a anam dílis. 💔
23
0
70
@LCAIreland
It's very alarming that
@HSELive
has told the health committee that all neurological symptoms in
#LongCovid
are neuropsychological - specifically FND.
This highlights that they are not keeping up with research.
9
19
75
I started Choline and every time I take it I start singing Jolene but replace it with Choline.
So now you will do the same.
You're welcome. 🤭
10
3
72
Imagine believing you can't have a reaction to a vaccine??
You can have a reaction to literally every type of medication out there, but this one thinks that can't happen with vaccines.
My god the ignorance. 🤦♀️🤦♀️
13
3
72
@Naomi_D_Harvey
I know right?! I'd have more respect for him if he admitted he missed the result. I missed it myself when I first looked! It makes absolutely no sense to call it a false positive and diagnose fibromyalgia instead.
3
0
73
Uggggh I'm allergic to social welfare forms. It's time to apply for long-term disability. I don't want this. 😭
Currently going through my medical files and reliving all of the dismissal and gaslighting. I can't help but think where I'd be now with adequate medical support. 😞
10
9
73
Oh he also completely ignored my
#MECFS
diagnosis, he read the specialists letter in front of me, I also mentioned it, he just ignored it and changed the subject. It's quite clear what his opinion is on these type of illnesses. He has no time for them.
1
2
69
Oh boy! Tilt test in 5 hours and my poor body is a shaky sweaty mess without beta blockers and electrolytes. I just had to crawl upstairs 😆
18
0
68
He said that I was probably anxious about getting vaccinated and this triggered FND. He never ASKED was I anxious. Of course I wasn't, it was my third Covid vaccine so I thought I was safe, I had never heard of hyperimmune reactions to vaccines. I had nothing to be anxious about.
2
2
72
@Niall_Boylan
As someone that has suffered a debilitating reaction to this vaccine, it breaks my heart to think how would babies handle this amount of pain if it goes wrong. There is absolutely no need for them to receive this vaccine.
1
1
70
Before I start, I am in no way anti-vax. Reactions to medications happen all of the time, but I don't think I would have had the same experience if I had a reaction to a new type of heart med instead of a new vaccine. Would I still be labelled as misinformation?? I doubt it.
2
7
72
@useless_priest
Ya, maybe. I brought up not being well enough to make any plans this summer and the subject was quickly changed. It would be nice if it was somewhat acknowledged instead of leaving it as the awkward elephant in the room. Maybe I've just lost my social skills!
2
1
68
A delivery man told me to have a nice day while handing me a package.
My brain responded: "You too!"
My mouth responded: "Love you too!"
I'm never answering the door again. 🫠
8
0
67
@cstroeckw
I just changed GP because my last one called me deceptive. 😞 No other GPs are taking on new patients. I know there's no point educating, I just have to keep taking the abuse for now until I can find a new GP.
2
1
65
Here we goooo. 😬 GP just gave me approval to get started! I'm not usually nervous about starting meds but I am nervous about this one. 🤞🤞
19
1
67
I'm still trying to figure out where the B1 deficiency came from. From reading research, it looks like the inflammation triggered by my
#postvax
reaction might have depleted my B1 levels? I'd love to hear people's opinions on this.
7
5
64
At the wedding, I had a group of ppl tell me that they recently had a virus that was so much worse than covid... While I was sitting there looking like I had parkinson's because I was sitting upright for too long.
I love hearing that your sore throat was worse than this. 🙃
5
0
64
And yes, losing these improvements is truly devastating beyond words.
I knew I could lose them, but I kept telling myself it'll be ok because I now know it's possible to feel that good again. But it still broke me.💔
It fucking sucks that there's no stability with this illness.
1
0
62
#TheNicotineTest
day 1 - 2.5mg 16h patch
- Extra fatigue and brain fog for the day.
- Developed mild muscle aches and joint pain in the evening.
- Slept well with vivid dreams.
Increased to 3.5mg 16h for day 2, will update tomorrow!
9
5
63
As per usual, when I attempt to talk about my vaccine reaction to anyone in Ireland outside of the LC/ME community, all I get is.. crickets.
I gave up trying last year because the silence honestly hurts too much.
I so wish we could talk about it.
I so wish my life mattered. 💔
@LiamQuaide
Those of us who have suffered devastating side effects from our covid vaccines feel silenced by these anti-vax trolls. 😞
Without recognition and support, we can't talk about it without feeding anti-vax trolls or being accused of causing vaccine hesitancy.
5
1
36
6
1
61