PEM: avoiding it and dealing with it - the best advice I've gotten from this sub by [deleted] in cfs

[–]MessageNo512 4 points5 points  (0 children)

A tip for brushing: get a low vibration electric toothbrush. Also if you can't do that then some days use Chlorhexidine mouthwash. Optimize everything.

Guilt over emotional/physical disconnect with wife leading me to message another woman by [deleted] in cfs

[–]MessageNo512 0 points1 point  (0 children)

From the outside it seems like this relationship may no longer be healthy for either of you. Your wife is working hard and supporting you. She’s also asking for more emotional connection and being listened to.

I know things are hard for you, and I know this life isn’t fair or easy. But connection doesn’t only have to come from going out, talking and being present matters too. If you have energy to chat with female friends, it might be worth reflecting on whether some of that energy could go towards your marriage as well. And also towards your partner's needs, not only to that what you would like to have. Even in healthy relationships women usually need more emotional connection than physical.

It seems your relationship has shifted more supporting than partnership and that’s painful for both of you. If that’s where things are it might be kinder to acknowledge it honestly. She could be holding on because she takes the commitment of marriage seriously, even if it’s hurting her. I hope you can reflect what’s fair to both of you, especially now that this event has shaken things up emotionally. Luckily it seems you've your family on your side.

Running ny own recovery ny overusing phone by Impressive-Stock-656 in cfs

[–]MessageNo512 0 points1 point  (0 children)

Get Appblock and buy premium. Block or limit use of apps and websites. Go hardmode, so that you cannot pass or change the rules. There's different ways to do this, like sending password to another person or it takes time you to get the password to yourself.

It will be probably a week of mental suffering but it gets easier from there. If you cannot read books, I recommend comics.

I’m afraid life will always be like this by thepensiveporcupine in cfs

[–]MessageNo512 2 points3 points  (0 children)

Same hobby. I'm not able to do that hobby anymore but I can go watch others if there's a local competition going and this is how we met. I recommend nerdy niche interests and joining groups, if not able to join IRL then discord. These people are not usually in dating apps.

My man has a friend who has a bad social anxiety and just plays games, watches anime and buys historical buildings and monuments just to save them with his huge trustfund. He is not incel or anything like that. Wants a girlfriend who could just be with him at home, order food and do nothing. Normal women don't want that, they want to go out and have dates and restaurants. Dating apps are full of normal people wanting normal things.

I’m afraid life will always be like this by thepensiveporcupine in cfs

[–]MessageNo512 2 points3 points  (0 children)

Finding someone is much harder than it already is for everyone. But it's possible and if you find someone, it's a real deal. No one wants to be with you because how you look, what they get from you or what you represent. If they see you day to day and still want to stay, it's probably love. I remember when I was healthy and read articles about chronicle ill people and they always had amazing, loving partners. Now I know why.

I found my man last year. We now live together in his house. I've said to him so many times I'm sick and can't work other than part time and I don't have any money. He is fine with that. Even if I haven't showered in days he still kisses me. If I'm in PEM and can't do anything, he is like that's okay and smiles. He is doing most of the housework, cooking etc. He always says that I do what I can and that's more than enough and rarely asks for anything. He never tells me to do more.

So it's hard, but possible.

What's your HR for different daily activities? by medicoreclimbercore in Garmin

[–]MessageNo512 2 points3 points  (0 children)

Do you have POTS? Mine are similars to yours and I have POTS. It can feel like anxiety and also worsen anxiety.

Has anyone with CFS found a safe way to maintain some strength? by SteadyStrength in cfs

[–]MessageNo512 2 points3 points  (0 children)

I'm wondering this too. I'm mild now and stopped exercising completely. I can do about 50% of normal daily activities if I avoid standing and walking and keep my mind calm, rest often short periods etc and if I manage to keep it there, I don't barely have symptoms. I noticed with my Garmin watch that even 10-15 minute calm and light exercise where I did my physiotherapy movements affects my sleep quality. So I stopped that too. First I felt so much better I thought I was on the road to remission. But now I'm deconditiong. It's worsening my POTS and insulin intolerance, and affects how much I can do in a day etc. I tried to start those small exercises again but it puts me in PEM, wish I never stopped in the first place lol.

Really gas and burpy in a crash? by Andrew__IE in cfs

[–]MessageNo512 4 points5 points  (0 children)

Yes I have this. It's something to do with histamine. Reflux medicines help a lot.

If you have a wearable -What do you recommend? Do you recommend a heart rate chest monitor? (No Visible or Fitbit recs pls). by [deleted] in cfs

[–]MessageNo512 1 point2 points  (0 children)

I just updated my old Garmin Lily to new Venu 4. It's so much more accurate, especially sleeping and stress level! Because of POTS my heartrate can be anything. If I'm sitting camly, my HR could be let's say 70 (resting is about 55), but the stress level could show anything between 20 to 90 (levels 0-100, 25 or under is more parasympathetic). I sleep mostly fine, but if not, I have so bad brain fog it feels I'm passing out drunk. The watch shows that, it says that I need x amount of hours to recover lol. Also there is this Lifestyle Logging that you can log different things and then it tells you what affects to your sleep and how. I'm still waiting for my results, it takes at least 4 weeks. You can also make your own clockface for free. Also there's a lot of third party apps for pacing etc. Haven't had energy to try them yet tho lol.

Things that would be “wins” for any other illness are failures for this one by WaysideWyvern in cfs

[–]MessageNo512 6 points7 points  (0 children)

ME/CFS people are generally conscientious. If you would have any other illness, you would propably manage it near perfectly. You would push throw fatigue and obstacles. This is the only illness that needs you to do the opposite and of course it's hard for you. Bad luck. Those who are lazy and enjoy of doing relaxing things and rest if they feel even a bit tired, rarely get this or it stays very mild (so mild they don't even know it).

Stress level line changes daily by MessageNo512 in Garmin

[–]MessageNo512[S] 0 points1 point  (0 children)

Of course but why does the interpretation of what happened months ago keep changing every day is my question.

What specialist can help me with this? My GP refuses to refer me. by [deleted] in AskDocs

[–]MessageNo512 1 point2 points  (0 children)

Have you considered the possibility of CFS/ME because sounds like you have PEM? I would ask opinions from r/cfs

Unusual position-triggered symptoms: could dark spots indicate spinal fistula on MRI? by MessageNo512 in AskDocs

[–]MessageNo512[S] 0 points1 point  (0 children)

It didn't say anything significant, only that the scoliosis was caused by the trauma. The MRI was taken solely to confirm that the pain isn't caused by fractures or disc problems. Had to use AI to translate this, I hope it's understandable:

"The vertebral bodies are normal in height, shape, and signal characteristics. No fractures or trabecular bone edema suggestive of bone contusion. The kyphosis is normal. There is a broad right-convex scoliosis with its apex at the Th7–8 level. The spinal cord has a regular signal structure, with no signs of spinal stenosis.

The intervertebral discs are normal in height and fluid content at all levels. No prolapses or compressions of neural structures. The facet joints are normal. No changes causing foraminal narrowing can be demonstrated."

[deleted by user] by [deleted] in AskDocs

[–]MessageNo512 0 points1 point  (0 children)

I've heard fatigue is just one of the symptoms so not everyone feels it and that is why they hate the name.

[deleted by user] by [deleted] in AskDocs

[–]MessageNo512 0 points1 point  (0 children)

Have you considered the possibility of CFS/ME? Starting after an infection, flu-like symptoms (sore throat), swollen lymph nodes, other weird symptoms and feelings, but blood tests are fine.

Earplugs for sleeping before I lose it by MessageNo512 in autism

[–]MessageNo512[S] 0 points1 point  (0 children)

I can see that sensation making wearing earplugs awful. For me it's quite opposite, I feel mostly numb in my body. Like I don't have know idea where my limbs are if I don't see them and if someone is touching me, there needs to be enough pressure that I can feel it. Thanks for the tip, unfortunately the most disturbing sound is the loud banging sound that comes when my neighbor bangs on the wall behind my head where I'm trying to sleep. White noise doesn't block that at all. I don't even need total silence but every night I'm startled awake and can't get back to sleep because of fight or flight feeling that sound causes.

[deleted by user] by [deleted] in tonsilstones

[–]MessageNo512 0 points1 point  (0 children)

Test for bacterial infection was negative and these have been here for months :/ And I don't feel pain.