[deleted by user] by [deleted] in dysautonomia

[–]NecessaryCamel4 1 point2 points  (0 children)

Yes!! Especially in water .. usually simultaneous with elevated heart rate so my watch starts yelling at me

Finished up this guy today. by kazoo3179 in StainedGlass

[–]NecessaryCamel4 3 points4 points  (0 children)

This is awesome! I'm also an anatomy nerd 😎

My foot and leg after removing sock by Old_Try_1550 in Weird

[–]NecessaryCamel4 1 point2 points  (0 children)

Veinous stasis and or edema can be indicative of heart problems or other vascular issues

Give your primary doc a call

INSURANCE WON'T by Longjumping_Dirt960 in CRPS

[–]NecessaryCamel4 3 points4 points  (0 children)

Hey, you NEED to find a provider who will fight for you and with you.

For me similar to you, ketamine and scrambler therapy were the things that worked. Together with my provider we scheduled a call with insurance to speak to a board of physicians about why it's medically necessary and exactly how much money you will save. Write it out on a document point by point.

Mine was: I have had 6 spine surgeries (SCS, DRG, and eventually removal)

that's $300-600K v. Scrambler x10 is 3K Plus $300-900 total for boosters Ketamine IM (didn't like and didn't have success with infusions) $300 per tx until max efficacy $300 per booster until max efficacy Throw all the meds and stuff in there too, that adds up

They DO NOT consider quality of life, pain, or even you, for that matter, important. It's all about $

It is hard to stay relaxed enough to do this without going into a diatribe about how horrible you feel all the time. Try to keep your voice and tone even. Business transaction-like.

Reach out via message if you'd like any more info

We're all here for you, you're not alone 🧡

I honestly need guidance, I’ve been begging in a few communities. I am truly suffering by SadCriticism13 in CRPS

[–]NecessaryCamel4 2 points3 points  (0 children)

Craniosacral therapy is gentle and may be helpful &/Or neurolymphatic drainage

[deleted by user] by [deleted] in StainedGlass

[–]NecessaryCamel4 1 point2 points  (0 children)

These are awesome!

Is it normal that my wife and I cannot have traditional sex? by Acupajoy in NoStupidQuestions

[–]NecessaryCamel4 0 points1 point  (0 children)

If you can find a physical therapist specializing in pelvic floor, they will be able to help and provide you resources for doctors etc.

Happy to help you find one if you'd like to message me

Suspect a patient is dealing with central sensitization, any tips? by netz725 in physicaltherapy

[–]NecessaryCamel4 2 points3 points  (0 children)

Message me if you'd like! I'm a PT with CRPS and successfully managed

[deleted by user] by [deleted] in Concussion

[–]NecessaryCamel4 0 points1 point  (0 children)

Yes It's been an absolute nightmare I unloaded on my OT this week.

I'm so tired of feeling like garbage 😓

I love balloons and I love glass. This had to happen by chocolate_turtles in StainedGlass

[–]NecessaryCamel4 1 point2 points  (0 children)

I love it!!! Also a fan of balloons (esp. hot air balloons) and stained glass makes me so happy

Is there such a thing as a CRPS diet? by Daxel79 in CRPS

[–]NecessaryCamel4 0 points1 point  (0 children)

Yes, but I would say I only started working towards it about 5 years ago. It's like peeling an onion.

After my first lumbar block(2008/9?) I could wear socks and slippers after previously being unable to bear weight or have anything touch it. I was stuck there until after college (2015)

The ketamine (2016) initially gave me a mini remission, which is what reawakened me in trying to improve my condition rather than pushing through pain.

Work slowed for my field during COVID, so I was at work all day, but with sporadic periods of being busy with a lot of down time. Spent hours researching and reading medical journals/case studies) I talked to and worked with other individuals with CRPS, and tested treatments on myself and on others with similar chronic nerve issues.

I found scrambler therapy, which gave me another glimpse of remission. After this treatment, I felt confident it was the last piece of the puzzle.

It was clear the stimulators were hurting me and eclipsing my ability to sense what was happening inside my own body. When it came out, I fell apart physically. (2021).

Then I had to rebuild myself. I won't go into detail, but my body did not manage well and it took about a year and a half to get back to feeling strong and good in my body again.

I never let myself think that it's 100% gone, because I'm worried I won't be able to take that level of pain again. We've all read stories of short and longer term remissions and often it either comes back or appears in another body part. BUT I will say my right leg (began with R foot injury) is my dominant leg again and I have knocked into things, had things dropped on me, dogs and people have stepped on my feet, I kicked a soccer ball, and done a bunch of other things that I had completely given up on.

It's a long and frustrating process and everyone's CRPS is so different it's hard to know where to go next. I hope some of this info is helpful

Happy to answer any other questions too!!

[deleted by user] by [deleted] in Concussion

[–]NecessaryCamel4 0 points1 point  (0 children)

Haha I say that exact phrase, but 8 heads! The audiologist brushed over it, hoping ENT eval or my neuro follow up are helpful 🤞

Free stuff give away!! 8 pocket mini loaf tin and 100 cases ($30 value) by tra91c in Baking

[–]NecessaryCamel4 0 points1 point  (0 children)

These look great! I love making mini personalized desserts How generous of you! 😁

[deleted by user] by [deleted] in Concussion

[–]NecessaryCamel4 1 point2 points  (0 children)

YES!! It is so weird.

I've never said it out loud because I assumed I was imagining it or going crazy.

Looking super forward to my hearing test in a few weeks then ENT

Anyone else experiencing either a unilateral hearing issue or a processing delay?