u/Tiny_Parsley

I was diagnosed with PsA with enthesitis, the doctor said i didn't have dactylitis.

When I flare up I have pain in my fingers, toes, Achilles, ankles, knees, elbows (the exact combo is unpredictable and changes over time).

I noticed that during flare-ups my fingers look more puffy, swollen and just "fat" or full of fluid, compared to outside of flare-ups. Yet they're not boiling red and the swelling isn't really localised to one knuckle.

Is that a common occurrence with only enthesitis? I feel swollen from everywhere it's so annoying.

C'est un truc qui est récurrent. À chaque fois que je croise une mamie âgée (genre 80 et plus), je me rends compte qu'elle sent un curieux et doux mélange de rose/bébé Cadum/lingettes/transpiration/voire caca mou.

Je me suis dit que c'était sûrement un mélange de produits genre parfum, savon etc et peut-être un petit manque d'hygiène. Mais justement étant moi-même handicapée, devant souvent sauter des douches et ayant recours aux lingettes lavantes, je ne sens toujours pas comme une douce mamie.

Vous savez ce qui rend leurs odeurs si spéciales ?

Amour à toutes les mamies ❤️

Like many here I've always struggled with teeth hygiene since... Forever.

I've identified many issues overlapping (still working on solving them all) and one of them has been friction.

I recently got a toothpaste packaged in a bottle with a pump dispenser. And it's AMAZING!!

You only need ONE STEP to get to brushing your teeth. You push the pump! That's it!

You don't need to find the toothpaste tube, hold it, open it, lose the lid in the meantime, compute how much toothpaste is needed, find the lid, close the tube, put back the tube...

I didn't think it would help so much, because I wasn't aware of how much executive dysfunction I had. But this is a game changer! One piece of the puzzle.

Hey there,

Just wanted to vent here and see if you relate and all.

During luteal, I become overwhelmed and lash out on people out of the blue! It's like, I can feel okayish and a decent human being and then, noise, sensory input, requests, interruptions will stack up and I'll suddenly become unbearable. On the verge of a panic attack mixed with rage and jitteriness.

Recently it's been like this when...

- I try to focus and my boyfriend interrupts me because he dares asking if I'm hungry for lunch (which I think is my normal ADHD symptoms but on steroids)

- driving my wheelchair in a busy street with pavement stones and trying to find my way

- having to compute more than a few things at once

I recognise a lot of these seem to be similar triggers to the difficulties I have with ADHD.

But the emotional dysregulation is really really bad.

Also for wheelchair users: how do you cope during PMDD? Does driving also become extra overwhelming during this time? How do you point out it's PMDD and not your health condition or exhaustion or not ADHD piercing through? Anything that helps?

Is it something you have too?

It's driving me mad. As soon as ovulation happens (according to my cycle tracking app) I go from energetic, focused, functional and happy to uncontrollably drowsy, sleepy sloth. Plus the intense despair and sudden sense that everything is wrong.

I have ADHD as well and I just can't function now. I feel sooo sedated and ritaline doesn't cut it.

It really feels like the PMDD hits for me as soon as estrogen levels drop and progesterone rises.

Edit to add: this drowsiness is how I've been feeling when I was on progestogen Dienogest/Visanne for endometriosis 😔 I stopped because I was so exhausted. Sleepy like exhausted.

Juste pour savoir si des personnes avaient fait ce switch et comment ça s'était passé, ce qui avait changé etc.

Alors voilà depuis que je suis petite je suis incapable de lire des livres. J'ai énormément de mal, à la maison je pleurais quand je devais lire des livres pour l'école. Dans toute ma vie entière (j'ai 35 ans) j'ai dû finir moins de 6 livres en tout, souvent par la contrainte. Les autres livres de non fiction dont les sujets me parlaient, je n'en ai lu que certains chapitres en mode "recherche d'informations" quand je travaillais activement sur mon mémoire quand je faisais mes études.

J'ai 2-3 auteurs que j'aime bien, quelques magazines et livres de non fiction que j'aimerais lire mais voilà, j'y arrive pas.

J'essaye de lire sous forme papier, j'essaye avec des audiobook, avec des ebooks. Mais rien n'y fait, mon cerveau va toujours ailleurs et je ne peux jamais me concentrer.

Je me sens bête et inférieure.

Wondering if anyone doesn't benefit from benzo and anything acting on gaba receptors or dampening the nervous system.

I know benzodiazepines comes with the risk of addiction and can be hard to withdraw from, so it's good to remember that it's not an easy treatment to initiate/please do this with a doctor. But this is not the focus of this conversation.

I really want to know if the majority of ME people benefit from benzo or not. I want to understand the rationale for it, because many seem to be able to have a higher tolerance to stimuli, but also better physical capacity with this.

What does it tell about ME?

Thank you!

Has anyone become less hungry since starting Xolair?

I started it 1.5 months ago and had 3 injections, which I tolerated well.

Yet, I've noticed that I'm less hungry than I used to be and I drop a bit of weight. I was slightly overweight before so it's not a "bad" thing for now but I'm wondering about the reasons why this happens.

I don't think I have digestive issues or slowed down transit/gastroparesis like issues.

But rather that my metabolism has shifted?

For now it's welcome but I'm wondering if it will not backfire, maybe it's too good to be true and it is because it's draining my immune system, or paradoxically increasing my inflammatory load or else. I can't believe Xolair is working so good.

Has anyone become less hungry since starting Xolair?

​

I started it 1.5 months ago and had 3 injections, which I tolerated well.

Yet, I've noticed that I'm less hungry than I used to be and I drop a bit of weight. I was slightly overweight before so it's not a "bad" thing for now but I'm wondering about the reasons why this happens.

​

I don't think I have digestive issues or slowed down transit/gastroparesis like issues.

But rather that my metabolism has shifted?

​

For now it's welcome but I'm wondering if it will not backfire, maybe it's too good to be true and it is because it's draining my immune system, or paradoxically increasing my inflammatory load or else. I can't believe Xolair is working so good.

Hi there!

First post here, I'm discovering the world of thermal cameras for smartphones. I'm looking for one of these "pluggable" devices for my art practice. So I actually somehow do not need to have numeric values or much data on my files.

What I'm looking for especially is a model with:

- highest frame rate available
- highest resolution available for exports
- possibility to export videos without brand logo/mark
- sound export, if that exists?

I imagine my request might not be the most common. Thanks a lot!

Wondering what causes this reaction.

Edit to add: what I refer to is the sudden onset of feeling like everything's wrong around you, with panic and sometimes derealization with intense need to flight.

Hi there,

Just wanted to share my experience here, in case some people want to read encouraging stories.

I had my first 150mg Xolair injection yesterday. I have the auto injector/pen. It was done in the hospital here in France, a nurse showed me how to do it in my belly. They monitored me for a few hours and let me go home.

To my surprise, absolutely nothing happened!

- Injecting the product wasn't painful at all.

- The injection point was neat, not even red.

- I had a bit of itchiness on my chest but it might have been absolutely unrelated to the Xolair.

- I started having a bit of tenderness at the injection point (the same as when you get a vaccine) after a few minutes. It went away within a few hours.

- I had a slight leg ache 4h after but it also went away quickly.

I came back home and I ate the same food as the day before, normal reaction. I chilled at home and really I have absolutely nothing to declare. I slept well. No weird sensation, no doom, no tongue tingling. No fatigue, no dizziness.

It's quite amazing to me because I was TERRIFIED of getting Xolair. I have dysautonomia and orthostatic intolerance, I need to use a wheelchair, so I was ready to feel dizzy and drowsy the whole day. Nope. I usually react very badly to medications. Well this time I didn't react either.

I'm on a current regimen of Desloratadine (3/day), Famotidine (3/day), Quercetin, Montelukast (can't tolerate it when taken everyday). I can't take Cromolyn anymore. I don't tolerate Aspirin, NSAIDs, fish oil... I took extra H1 blockers and quercetin before my Xolair shot and made sure to avoid any triggers the days before.

Of course we don't know how I'll tolerate my next injections but it's very encouraging to me so far.

I hope it'll stay like this!

Edit to add:

• I have no clue if my IgE are elevated, as far as I know I don't have IgE allergies. My doctor prescribed me Xolair on the basis of having MCAS
• I now have some kind of imposter syndrome because I'm wondering: if I didn't react to Xolair maybe it means I don't have MCAS at all?
• I also have hEDS, endometriosis/adenomyosis, psoriasis, PsA, ADHD, and a diagnosis of ME

I have MCAS since I'm a kid for sure, a long laundry list of comorbidities collected over the year (hEDS, endometriosis, adenomyosis, ADHD, psoriasis, psoriasis arthritis, dysautonomia orthostatic intolerance and ME.) my health deteriorated slowly with the years and ultimately became bedbound after the COVID vaccines.

Finally got diagnosed with MCAS a few years ago (in my 30s) and I can tell for sure that treating the MCAS is what is helping my health the most. I'm slowly emerging from this huge crash thanks to MCAS treatments.

Now the harsh part is that it's been a few years already and I still don't manage to find a long term stack of meds that really fix everything.

I'm lucky that I tolerate H1 blockers, H2 blockers and quercetin. I'm also lucky I can access meds where I am.

Next to that, mast cells stabilisers DO help me tremendously. But I haven't been able to tolerate more than 0.5mg of Ketotifen at night (the drowsiness is insane and my methylphenidate for ADHD doesn't cut it), I can't take Cromolyn (I had intense abdominal distention, major lympathic issues on it).

Other meds make me worse, I can't take NSAIDs, not aspirin (worsens my MCAS). I can't take LDN (major worsening of my issues on a very low dose).

More recently it's been montelukast. Within a few days of taking it I felt I could sit up better at the table, I had less orthostatic intolerance, I managed to eat butter chicken and not react to it (!?). I had energy again. Throat ache gone.

But I had to stop because I developed over the past 48h a weird anxiety and doom and sadness while on it (it's a super known side effect). So I stopped and skipped a dose. I feel like I want to cry less (yay).

But holy hell. Now my cheeks are burning, my nose is congested, I have a headache and I feel like I need to lay down more. I didn't realise it helped so well with all these symptoms.

I'm so done with not tolerating any med.

I'm lucky enough that xolair is the next med I'll be able to try (hospital appointment in a few weeks for first injection at 150mg).

But I'm so scared. What if it doesn't work? What if it works but the side effects are unbearable? What if I have to stop? I'm so tired of this.

Has anyone failed all the other meds because of side effects and Xolair was the one easy to tolerate?

Hi there

I'm wondering what's the best type of seat cushion for hot weather. If there are any materials or technologies that help maximise air flow, or even actively help cooling down the skin.

I'm trying to prepare for the summer...

For information, I'm an ambulatory wheelchair user who uses a Comfygo powerchair. I have dysautonomia, orthostatic intolerance and heat intolerance. I don't have specific needs in terms of cushions, I don't have specific spinal issues. So seating cushions (also not specifically for wheelchairs) could work.

I currently have an unbranded 8cm high cushion with some gel pad on top, but it's not breathable and has a plastic case. Good for winter and wet weather. Horrible in the heat!

Thanks!

Salut,

Je prends 40 mg de famotidine matin et soir à cause de problèmes chroniques que je dois gérer (hernie hiatale et SAMA). C’est un traitement non négociable que je dois prendre le matin en même temps que mes médicaments pour le TDAH. Décaler la prise de quelques heures ne change pas les effets secondaires. Ce médicament diminue l’acidité de mon estomac (augmente le pH) et pourrait aussi ralentir ma digestion.

J’essaie différentes formes de méthylphénidate et la molécule fonctionne très bien pour mon TDAH.

Le problème, c’est que je n’arrive pas à trouver une forme à libération prolongée qui fonctionne correctement !

- Ritaline LP : c’est toujours une montagne russe. Ça marche parfaitement certains jours et c’est fluide jusqu’à 15h. Mais parfois le deuxième pic est retardé de plusieurs heures et j'ai l’impression que tout le médicament est libéré d’un coup vers 18h donc ça fait un rush d'un coup, sans grande couverture après le pic du matin, surtout si je mange le midi (soupir). D’autres fois, le second pic arrive à 13h. Et ensuite il n’y a plus de couverture pour le reste de la journée.

- Concerta : plus stable, mais je me sentais sous-dosé pendant la journée, et ça durait beaucoup trop longtemps (insomnies).

- Medikinet : beaucoup trop fort tôt dans la journée, puis plus aucune couverture ensuite.

Celui que je n’ai pas encore essayé c'est Quasym.

Quand je prends de la Ritaline LI, au moins j’ai l’impression que c’est assez fiable.

Est-ce que quelqu’un comprend bien comment les différents systèmes de libération (SODAS vs Diffucaps vs OROS etc.) peuvent interagir avec une faible acidité gastrique ?

Est-ce que quelqu’un a déjà eu des problèmes similaires ?

Je vais essayer d’en discuter avec mon pharmacien de toutes façons.

Merci !!!