u/petitcurieux77

I am currently in a very bad PEM.

I tried to do somatic tracking but focusing on my symptoms, even with curiosity made me see how intense they are, and so I am scared it may damage my baseline.

As it can be the case with all PEM as far as I know, I don’t understand how we are suppose to not fear them

,

I have been trying to do brain retraining for 2 weeks and barely nothing works

Background : moderate-severe ME, chronic anxiety / fight or flight, PTSD, mental OCD, depression, GAD, burnout, severe sleep issues. Meds works a bit for depression, but not for anxiety.

My success :

3 days ago i started playing ukulele again, everyday, and have few symptoms. However i don’t feel joy ( severe depression ).

Not over scanning symptoms, worry less about symptoms : I do more bc I don’t stop as quick, i am less anxious about symptoms but still anxious Especially of anxiety and the fact that I Struggle with brain retraining. Feeling despaired / hopeless,

Failures :

Daily non guided 30 min Yoda Nidra or mindfulness : not calm, always in fight or flight even with not anxious thoughts, makes my HR rise by 20 beats.

Guided meditation ( Joe Dispensa ) : after 15 min I have sound intolerance. No effects

Breathwork : hate it and no benefits at all. Only tried for 5 min max.

Visualization : I barely don’y do it, I hate it. Sometimes I can feel emotions but I don’t like feeling emotions. I feel like it’s too much mess for my brain.

Being outside, under the sun : makes me very anxious ( PTSD, I feel less secure )

Hugging my iner child, telling myself that I am safe ; no effects

Walking, seing friends, talking much.: I am too scared of getting worse for that

What should I do ?! Anyone recovered inspite on so many issues :/ ?

Hi,

I have been trying to do brain retraining for 2 weeks and barely nothing works

Background : moderate-severe ME, chronic anxiety / fight or flight, PTSD, mental OCD, depression, GAD, burnout, severe sleep issues. Meds works a bit for depression, but not for anxiety.

My success :

3 days ago i started playing ukulele again, everyday, and have few symptoms. However i don’t feel joy ( severe depression ).

Not over scanning symptoms, worry less about symptoms : I do more bc I don’t stop as quick, i am less anxious about symptoms but still anxious Especially of anxiety and the fact that I Struggle with brain retraining. Feeling despaired / hopeless,

Failures :

Daily non guided 30 min Yoda Nidra or mindfulness : not calm, always in fight or flight even with not anxious thoughts, makes my HR rise by 20 beats.

Guided meditation ( Joe Dispensa ) : after 15 min I have sound intolerance. No effects

Breathwork : hate it and no benefits at all. Only tried for 5 min max.

Visualization : I barely don’y do it, I hate it. Sometimes I can feel emotions but I don’t like feeling emotions. I feel like it’s too much mess for my brain.

Being outside, under the sun : makes me very anxious ( PTSD, I feel less secure )

Hugging my iner child, telling myself that I am safe ; no effects

Walking, seing friends, talking much.: I am too scared of getting worse for that

What should I do ?! Anyone recovered inspite on so many issues :/ ?

I am looking for a diversity of exercices so that I don’t get bored, thanks :)

Hello,

I am new to meditation. I tried some guided meditation ( Joe Dispenza, Yoda Nidra, sleep relaxation ) and not guided ones ( basically Yoga Nidra or Noting on my own ) for approximately 20 min per session, and, while I can calm my thought and am not that anxious, I can’t relax.

To add more context, I am in chronic fight or flight / tired but wired mode so what I call “few anxiety” might be a lot anxiety which I am used to. My heartbeat after meditation, lying down, is still 73, while my regular heartbeat lying down is 80. This is mainly bc of fight or flight.

But I don’t get anxious thoughts.

What should I do ? Is it “useless” ( I meditate to help calm down my fight or flight ) if I can’t really calm down ?

Thanks

Hi,

I struggle with very severe fatigue ( medical condition ) and cannot do much efforts.

Are there some “active” meditation I can do lying down ? Should I combine active and passive meditation and if so how ?

I am thinking about it bc I read this on the sub :

In order to experience that deeper purpose of meditation, you have to be a little bit more serious about your practice than just 10-20 minutes a day. According to yogic science, it takes the body 40 minutes to relax in order for the mind to be relaxed and open that door. So if you want to experience those states, the recommended time for yogis is at least 1 hour. That's why a lot of active meditation is incorporated into the practice, so you're not just sitting for an hour but there are techniques that you use that incorporate movement in order to unburden the body/ mind of accumulated stress and tension.

I am new to meditation and want to do it extensively. I need to get out of fight or flight to heal from my medical condition.

Thank you for any tips!!

Je me demande si les femmes ressentent un esprit de competition entre elles ( est-ce que ça dépend des aspects ? ) et si oui comment ça se manifeste / comment vous le vivez, et est ce que ce n’est pas contradictoire avec le discours de solidarité féminine ?

Je suppose que ce discours est vrai pour certains aspects comme le fait de se protéger des mecs lourds, mais quid des autres ?

Hi,

i am severe and can only tolerate very little activities. I would like to start a nervous system regulation jounrey but idk where to start.

I tried meditation but don’t succeed in doing it more than 3 minutes ( I have ADHD, makes it harder I guess ). breathwork do not work and EFT seems to do nothing just after the practice.

Where should I start ? Thank you so much for any help

what’s your experience with that, what dose do you take, how often, and for how long ?

i can do more on benzos, I wonder if I could use benzos everyday if they keep working, if the only downside is that I sould tapper off oneday.

I could then tapper off whenever I find another treatment

whzt do you tjunk ?

Curieux de savoir si « tout le monde a des regrets« , ou si ça ne se manifeste comme regret que chez une partie des gens et que d’autres dépassent les erreurs du passé.

Ma question concerne les amis ou potes lorsque le « comment tu vas » semble être une vrai question. Dans potes j’inclu les gens que je vois 1 fois par an mais que j’aime bcppp.

Si c’est clairement une formule de politesse, comme lorsqu’on me demande qq chose ensuite, je reponds généralement pas à la question et réponds direct à ce qu’on me demande, et quand on me dit irl « salut ça va » pour me saluer je réponds généralement « oui et toi ».

Mais dans le cas contraire, je réponds généralement honnêtement, alors que en retour quasi tout le monde me dit que ça va 😅

Si je dis rarement que ça va, c’est que j’ai été diagnostiqué cette année apres 6 ans d errance médicale ( donc 6 ans que ça va pas ) d’une maladie incurable TRES handicapante qui définit tout mon quotidien / ma vie actuellement, et qui s’aggrave rapidement, + une dépression sévère depuis 7 ans ( au fait, j’ai 26 ans ). En gros, non ça va pas, et j’aime pas ne pas être authentique / alimenter ce manque d’authenticité qui marque la société actuelle. Mais je ne veux pas non plus être trop négatif !

Le compromis que j’ai trouvé c’est de dire quand ça va pas ( quasi tout le temps ..), mais en diminuant l’intensité. Ça va pas du tout = « moyen«  / « pas ouf ». Ça va moyen =«  ça peut aller » et je développe +/- selon le contexte ( et sans chercher à tourner trop en positif les choses ). En revanche, quand ça me semble donc être une vraie question, je dis quasi jamais que « ça va ».

Je précise toutefois que je ne cherche pas à parler de mon mal etre avec autrui et même que je préfère ne pas en parler, autre que juste mettre au courant un ami de ce que je vis, mais à but informatif pas dans le but de vider mon sac.

Sinon je dirai que je suis sqn de positif à qui il arrive des choses négatives et qui peut parler d’autre choses et qui s’interesse à la vie des autres.

Je me demande si ça vous semble adapté comme réponse ou pas ?

Est-ce égocentrique d´apporter ainsi un mood authentique mais négatif, car « tout le monde a ses problèmes ? », malgré la gravité des miens ?

Est-ce repoussant un ami ou pote qui vous répond comme ça ?

Comment répondriez vous à ma place ?

merci pour vos avis !

Hi,

Doctors and pharmacist say I take too many meds. I don't know if they are right since :

- I added them one by one and made sure I tolerate them before adding another one.
- 3 are low dose, 1 is melatonin
- My blood tests are fine !
- Medical professional are not familiar with chronic disease and ME/CFS and MCAS
- 3 are clearly useful, I am still titrating up for 3, 1 is for prevention, 2 will be discontinued because not useful.

I take :
2 meds for ME/CFS ( LDA and LDN ) : so far not useful but I am still titrating them up
2 meds for depression ( Trintellix and Lamotrigine ) : 1 useful, the other one will be discontinued
2 meds for APS syndrom ( baby aspirin and Plaquenil ) : I is for prevention the other one takes months to work.
4 meds for sleep ( zolpidem, gabapentin, daridorexant, melatonine ) : useful, maybe 2 not necessary but considered quite safe. Will try to withdraw them if I can.
+ A few supplements and vitamins.

I plan to discontinue 2 and take 4 more meds bc I also have PTSD / severe GAD and suspect MCAS and want to try something else for ME/CFS.

What do you think ?

Hi,

I am a severe-v.severe EM sufferer, I started LDA 0.25mg after starting LDN 0,5mg. I titrated up LDN 0,5mg every 2 weeks and LDA 0,25mg every month. So far I am at 2,5mg LDN and 0,5mg LDA.

Currently I have 0 effects and am feeling worse but I am 95% sure it's due to some recent crashes.

I wonder if it's fine to take both at the same time ? I don't care to know which one is working as long as it works ! And life is so hard I can't wait months for LDN.

I don't understand why some docs say one should be tried after the other. It's only 2 meds and low dose ones. Currently it's very likely I am not getting worse because of them.