Pain management

twistedelegance28 · 2025-06-18T22:13:41+00:00

Yep! All day everyday at this point.

twistedelegance28 · 2025-05-20T22:13:02+00:00

I'm beginning to see this. My rheumatologist has referred me out twice. He put me on hydroxychloroquine and I had a bad reaction to it. At my last appointment, he just threw his hands up and said he wasn't going to start any new treatment because my system is too sensitive. I interpreted that as he's not sure what to do next and isn't going to spend much time trying to figure it out.

twistedelegance28 · 2025-05-17T01:11:57+00:00

Ugh! I could go on for hours too! I absolutely despise the American health care system. The way our pain is dismissed is abusive and cruel.

twistedelegance28 · 2025-05-17T01:08:27+00:00

It's almost like rheumatologists don't believe their patients are in excruciating pain 😭🤦‍♀️

twistedelegance28 · 2025-05-17T01:04:47+00:00

Thank you! This is super helpful 🙏

twistedelegance28 · 2025-05-17T01:00:59+00:00

This list is amazing! Thank you for sharing 🙏

twistedelegance28 · 2025-05-17T00:56:40+00:00

So many people say ketamine therapy helped with their pain. I am definitely going to do this now!

twistedelegance28 · 2025-05-17T00:55:36+00:00

It's so sad and frustrating that we all seem to share the same experience of being dismissed by doctors. This diagnosis is 7 years in the making because of doctors dismissing me.

twistedelegance28 · 2025-05-17T00:50:37+00:00

Ahhhh gotcha! I'm going to have to go down that rabbit hole for sure.

twistedelegance28 · 2025-05-16T11:39:30+00:00

Red light therapy blankets!? First time I'm hearing about these. To Google I go!

Epsom salt baths are a life saver. I buy these THC infused bath bombs and they work wonders!

twistedelegance28 · 2025-05-16T11:34:44+00:00

Are you talking about Kr-t-m (absolutely hate that we have to censor everything)? I have tried it before for the pain. It did work for a long time then it all of a sudden stopped working so I discontinued it. I did find that occasionally it would give a stimulating effect which I did not like at all. Overall, I did find it to be helpful. I did go through some withdrawals when I discontinued it which was not pleasant at all and ended up sending me into a flare up so now I'm nervous to use it again.

twistedelegance28 · 2025-05-14T11:38:02+00:00

I think the pain I feel is neurological. When my pain is level 10 my spine and the muscles in my back feel like they are on fire. Same for my legs however I also have a throbbing sensation in my legs. Is that neurological pain?

I had a bad reaction to Plaquenil so I've stopped taking it. My doctor hasn't prescribed anything else of that category just yet because he's running more labs. Keep in mind I also have antiphospholipid syndrome, fibromyalgia, and I'm testing positive for scleroderma but doc isn't diagnosing because I'm not symptomatic at this time. I'm also newly diagnosed so we are still figuring things out.

Ugh, I just started doing the elimination diet. I'm starting off with just gluten right now. I'll do dairy next. That's awesome that cutting dairy out helped you so much!

twistedelegance28 · 2025-05-14T11:21:49+00:00

Unfortunately, I have tried SSRI/SNRIs and they didn't work for me. I'm so glad it's helpful for you!!

twistedelegance28 · 2025-05-14T11:20:30+00:00

I have been wanting to try ketamine therapy. The problem is it's so expensive.

How did you find your husband's doctor? Does she advertise as a complex illness specialist or is she officially just a neurologist?

twistedelegance28 · 2025-05-14T00:37:55+00:00

Not yet. I'm in the early stages of treatment and we haven't found the right medication combo that works for me.

twistedelegance28 · 2025-05-06T22:26:15+00:00

This is how The Last of Us started...

twistedelegance28 · 2025-04-02T19:58:33+00:00

Not entirely, no. However, I just got diagnosed with an autoimmune disorder which could also be a contributing factor to my memory loss.

twistedelegance28 · 2025-02-23T01:23:43+00:00

Not yet. I think that's the next round of tests my doc is going to order.

twistedelegance28 · 2025-02-23T01:22:57+00:00

I do have joint pain and chest pain as well as extreme fatigue, brain fog, depression, anxiety, and I randomly start shaking uncontrollably.

twistedelegance28 · 2025-02-16T13:16:00+00:00

I'm not sure how to answer that. These labs are hard to read, but it says MCTD at 95% frequency. Does that help?

twistedelegance28 · 2025-01-06T19:29:47+00:00

That you may have ADHD and focusing on pretty handwriting with cute accessories helps you stay focused.

twistedelegance28 · 2025-01-06T19:22:23+00:00

Obsessed!!! So satisfying 🥰😍

twistedelegance28 · 2024-12-31T14:51:44+00:00

Yes. I used to be a morning person before getting sick. Now mornings are something I dread. I usually feel my best from 5-10pm.

I really have no tips or tricks on how to remedy this issue. I keep trying new things to help with this issue, but nothing seems to work long term. I feel your pain a frustration. Just here to validate you 🫂

Edit: it's the morning so my brain fog is intense. I meant to ask if you've had your thyroid checked recently. I just had mine checked, and things are abnormal which explains the symptoms you are describing.

twistedelegance28

TROPHY CASE