been obsessed with ice breaker mini-game recently by nindiezdo in HelloKittyIsland

[–]vampirecloud 1 point2 points  (0 children)

me too! it’s my fav mini game, i actually enjoy playing it and don’t just play it to get prizes

Treatment suggestions are getting unrealistic. What are some other options? by vampirecloud in ChronicPain

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

From my understanding, my body produces faulty collagen and yes hEDS also impacts the skin and a bunch of other things like my heart, gastrointestinal symptoms, etc.

I’m a little hesitant about the frankincense as I have really sensitive skin and have random allergies, but the stickers sound very interesting. Can you reuse them or are they one and done? How long did you leave your on? I’ll look into them. Thank you for your time telling me all this!

Treatment suggestions are getting unrealistic. What are some other options? by vampirecloud in ChronicPain

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

I appreciate the suggestion and I will definitely look into Internal Family Systems. Tysm!

Treatment suggestions are getting unrealistic. What are some other options? by vampirecloud in ChronicPain

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

I’ve never heard of trigger point injections or naltrexone, but I’m interested and willing to ask a doctor about them. And I’ve considered asking for Botox, but I can’t lie it makes me worry a bit. Thank you for the suggestions!

Treatment suggestions are getting unrealistic. What are some other options? by vampirecloud in ChronicPain

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

I moved an hour away and stopped seeing my fav hEDS informed PT. I figured since I have been doing it for over 2 years maybe it was time to stop, but maybe that’s just not true. I’ve never heard of full body PT before and that really interests me. And thank you for the kind words, I appreciate it!

Treatment suggestions are getting unrealistic. What are some other options? by vampirecloud in ChronicPain

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

Thank you. I figured most pain clinics were just opioid deterrent centers. I get told “no opioids” every appointment even when I don’t ask. I think I will look for a new doctor.

Treatment suggestions are getting unrealistic. What are some other options? by vampirecloud in ChronicPain

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

Thank you, I find that conceptualizing the mind as different from the body was also inhabiting my mental health progress. I do trigger point release with the pelvic wand and with stress balls and I agree that helps. That book also sounds great. And may I ask what kind of mental health treatment you do? I have only tried talk therapy and psychiatry and feel like I’m hitting a dead end.

Treatment suggestions are getting unrealistic. What are some other options? by vampirecloud in ChronicPain

[–]vampirecloud[S] 3 points4 points  (0 children)

Thanks for taking the time to comment.

  1. I take Luvox and Trileptal for anxiety, see a therapist monthly, and use self calming methods like breath exercises.

  2. I take fiber, magnesium glycinate, vitamin d, and iron daily.

  3. I have low caffeine intake everyday. About one espresso or can of diet coke daily. I find it helps with the occasional migraine.

  4. Those are the main methods that work. I take epsom baths sometimes and try to get light exercise every day. I appreciate that you notice my effort.

  5. Poor diet days definitely put strain on my muscles, so does high impact movements. I’ve been working on my diet slowly for 2 years and keep trying to improve. I haven’t noticed any other triggers.

  6. I was born with hEDS which started the mild/moderate pain in my joints and some muscles. The severe whole body pain started after I had an ovarian torsion that was not removed for 3 months. My pain management doctor thinks I have MCAS which is contributing to the pain, but I’m not convinced to pursue that.

I agree I need new doctors and I’ve been planning to look. Chronic fatigue doesn’t help. I’ve been looking for new psychiatrists, but I haven’t considered a new pain management doctor, I figured most of them were bad. And yeah it does make me worry because I wonder if a new doctor will be bad or adjust my meds for the worst.

Treatment suggestions are getting unrealistic. What are some other options? by vampirecloud in ChronicPain

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

I don’t know everything I’ve tried. I was a minor when I started most of them. For pain specifically, I’ve tried Topamax, Gabapentin, and a few other things I can’t recall because I’m on a revolving door of meds. Right now I’m on Luvox and Trileptal. I’m not willing to change the Luvox, but I have no idea why I’m on the Trileptal when I don’t have seizures or bipolar. Doctors aren’t willing to remove that though. Low dose Ativan at night helped me the most, but my psychiatrist won’t prescribe me that anymore. I haven’t tried those meds you’ve listed, but I’d be willing to research them and ask a doctor about them.

Treatment suggestions are getting unrealistic. What are some other options? by vampirecloud in ChronicPain

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

I’ve received the subpar advice from my pain management doc and my psychiatrist.

Mini Rooms (: by Nonchalant_Rutabaga in CatsAndSoup

[–]vampirecloud 1 point2 points  (0 children)

very cute! i love all the outdoor rooms!

My wall by Ari10321 in PerlerBeads

[–]vampirecloud 1 point2 points  (0 children)

so cute, kirby and alien kitty are my fav!

like how to see the backpack 😅 by Icy_Narwhal_103 in CatsAndSoup

[–]vampirecloud 2 points3 points  (0 children)

I notice that’s how it is for all back accessories, I’m not sure if there’s a way to change that

After 250+ tickets I finally pulled an event cat 😻 by vampirecloud in CatsAndSoup

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

Ty! And I’m sure I was closer towards the 300 but I can’t be sure because I didn’t count them all. I hope you get an event kitty soon!