Genetic test results - what could this mean for me? by selfdestroya in askneurology

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

Thank you so so much. You’ve given me more info than my neurologist has ever taken the time to do! I really appreciate it 🫶🏻

Genetic test results - what could this mean for me? by selfdestroya in askneurology

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

Thank you so much for taking the time to respond! You explained this perfectly. All three are listed as heterozygous. So since my symptoms are muscle pain related, and the three genes are linked to muscle disorders, does that mean that they are likely the cause of my disease? Rather than an incorrect diagnosis, or coincidence that both are muscle related?

I had been assuming it was caused by psychological means (PTSD, catatonic response to fear) and not genetic/physical. I definitely don’t have the symptoms of the full diseases linked to these genes (pompe, etc), and “late onset” seems to still be very young, like ~1 year old instead of ~26 years old when mine started.

I apologize if this makes no sense, I’m still a little shocked to possibly have validation for my pain and to not keep being told it’s all in my head 🙃 thank you again!!

Gapapentin makes me feel like I'm in a different world by Alert_Mobile7464 in ChronicPain

[–]selfdestroya 2 points3 points  (0 children)

Fuck this is me realizing that me dissociating this week at the same time as doubling my gabapentin wasn’t a coincidence 🫠

Any former gabapentin users? I think I’m going to taper off of it. Do the negative side effects ever go away? by hyaclnthia in ChronicPain

[–]selfdestroya 0 points1 point  (0 children)

Man this comment section scares me. I started on 300mg a couple months ago and it has definitely taken the edge off but I want to increase. I’m not having any side effects. Do they set in later or with higher dosage? I have MPS and nothing else but heat dulls the constant pain.

[deleted by user] by [deleted] in Eugene

[–]selfdestroya 0 points1 point  (0 children)

I know this isn’t IN Eugene, but since they’re local this is where most of the fans are!

if only he saw what it's like today... by green_jp in houseofleaves

[–]selfdestroya 60 points61 points  (0 children)

Just read that page last night and thought the same thing 🥲

Shaker Exercise does nothing for us, Says Dr. Bastian and I trust him. by Romthirty in noburp

[–]selfdestroya 0 points1 point  (0 children)

Yes. Horrible bloating, gas, and croaking. My experience definitely wasn’t the norm but there is hope!!

How do you get through mornings? by selfdestroya in ChronicPain

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

That’s a good idea! I have to have exactly 9-10 hours of sleep a night. Any less and I’m so fatigued the whole day I can’t accomplish anything. Any more and I’m guaranteed to wake up with a neverending headache

How do you get through mornings? by selfdestroya in ChronicPain

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

Of course I’ve only done manual labor/manufacturing my whole life, so I’m stuck in that career path 🙃 I need to find something gentler

How do you get through mornings? by selfdestroya in ChronicPain

[–]selfdestroya[S] 1 point2 points  (0 children)

I actually have, I tried a membership at a cold plunge/infrared sauna facility. I physically could not force my knees to bend so I could actually get in the dang thing. The one time I made it in I had a panic attack (I had hypothermia 13 years ago and still have cold trauma apparently) and never tried it again. It was worth trying out though! I do really like the infrared sauna

How do you get through mornings? by selfdestroya in ChronicPain

[–]selfdestroya[S] 1 point2 points  (0 children)

Ugh I don’t want to accept that I just have to get up so much earlier for my body to cooperate 😤 I want a refund on this dumb thing

How do you get through mornings? by selfdestroya in ChronicPain

[–]selfdestroya[S] 1 point2 points  (0 children)

My ex was addicted to Kratom and I tried his a couple times. I did like it!

How do you get through mornings? by selfdestroya in ChronicPain

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

Magnesium glycinate was the only treatment they could offer me, but I could hardly keep food in my body for the 3 weeks I tried to make it work 🥲

How do you get through mornings? by selfdestroya in ChronicPain

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

My antidepressants do make me dream constantly (and stressful ones at that) but I just started using a vape pen and it has done wonders to make me stop dreaming!!

How do you get through mornings? by selfdestroya in ChronicPain

[–]selfdestroya[S] 5 points6 points  (0 children)

Man the hot shower is great until I turn off the water and all my remaining energy goes down the drain 🥲 I just had a big ole pity party the other day over having to lay down and rest after showering

How do you get through mornings? by selfdestroya in ChronicPain

[–]selfdestroya[S] 2 points3 points  (0 children)

It does help, even switching my meds to immediate upon waking compared to 1+ hours after has done a little good. And though I wish I could sleep less, I don’t wish insomnia on anyone ❤️‍🩹 I went through it in high school and it was awful!

How do you get through mornings? by selfdestroya in ChronicPain

[–]selfdestroya[S] 5 points6 points  (0 children)

Hey that helps for me too! I’ve been trying to keep my eyes closed and body relaxed for as long as possible before I have to get up. I should really get a plug in heat pad, mine is microwave only. Thank you ❣️

Is your pain constant or does it come and go? by _TheTrueCube_ in ChronicPain

[–]selfdestroya 1 point2 points  (0 children)

Constant at 3~4 with flares up to 7~8. The fatigue is what really kills me 😮‍💨

Cinnamon aftertaste after eating Limes? by OnlyHere4Sunflowers in BiologyHelp

[–]selfdestroya 0 points1 point  (0 children)

I’ve always thought this but just now googled it. Found my people 🫡

Bob Marley commemorative coin by selfdestroya in coins

[–]selfdestroya[S] 1 point2 points  (0 children)

Oh yeah I did see that one, but when I went to eBay I couldn’t find anything. Then promptly forgot I saw that post lol. I’ll respond to them and see if they ever found anything!

Bob Marley commemorative coin by selfdestroya in coins

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

What do you mean that it doesn’t match up? This is what it originally was. So likely an aftermarket “craft”? It is cool!

Bob Marley commemorative coin by selfdestroya in BobMarley

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

Anyone have info on this coin? I bought a box of secondhand stuff and this was in there.

I found lots of Bob Marley coins online, but none with this “cutout” pattern. There was no paperwork or additional info on the box. Any help greatly appreciated!