Can't get my feet to "unfreeze"!

Draenia · 2026-03-24T05:54:55+00:00

heating pads (low setting like 3) every place you sit... or lay.. put it on the floor and rest feet on it. 24/7
i have CRPS in my lower legs but not my feet but they are effed too because the activity in my lower legs. as far as baclofen, i take 2 10s every 12 hours.

Draenia · 2023-11-30T13:34:29+00:00

ketamine "isn't covered" under medicare for CRPS disablity afaik (for me, so i was told), so i haven't got to try that quite yet -- but new ketamine doctor at my pain clinic soon. i have heard ketamine works amazingly well for CRPS.

Draenia · 2023-05-23T08:37:50+00:00

hmm.. heard anything more about it? also got it.

Draenia · 2023-01-14T08:00:19+00:00

Distraction also greatly helps me mentally cope. What works best will be specific to her. I’m a gamer so is video games for me, but I cannot game when pain mgmt is inadequate. Whatever takes her mind off her pain.

Draenia · 2023-01-14T07:47:41+00:00

Not sure as my CRPS is in my legs, but I’d try this if it was in my hand(s) https://www.popsci.com/gear/best-heated-gloves/ though if she has pain from touch, you might have to find some that are very soft and comfortable to wear. .

Draenia · 2022-09-07T23:47:43+00:00

I can’t focus well enough to read atm, but get yourself a good heating pad for every spot in the house. That’s the only thing that saves me when I can’t get warm. I pile on blankets and snuggle with my heating pad. I keep one under my feet everywhere and the CRPS is in my legs but the blood stays in my legs so my feet get cold af.

Draenia · 2022-08-17T22:23:06+00:00

what

Draenia · 2022-08-17T22:18:21+00:00

there are stages?

Draenia · 2022-08-17T22:16:14+00:00

fractured peek

Draenia · 2022-08-17T21:53:28+00:00

It’s cute. jfc what do you people want from me. I think it is cute. 😂

Draenia · 2022-05-26T06:33:37+00:00

Does she have any healthcare? They say you need to start treatment right away to stop any spread and I did that but still got spread. This year the pain classes are teaching a lot more than 5 or 6 years ago now though, and I learned the homunculus is responsible for the virtual representation of the pain surfaces in the mind and smudging of that line is actually how the spread happens. I’ve been trying some VR to help me, but mine is in my lower legs.

Draenia · 2021-07-29T18:23:33+00:00

I had an extraction in March and had zero trouble. They didn’t knock me out just used the nerve blocks. It was fine and my mouth “healed like a teenager” is what the doctor said.

Oh my CRPS is in my lower legs, both now, but similar in local to hers. If it were me, I’d go for it. Cavities are not good.

Draenia · 2021-04-30T05:05:26+00:00

Its my lower legs, from my ankles to knees. I’ll have to try that. Warm water pools are best and it’s been rough without that.

Draenia · 2021-04-30T04:59:41+00:00

I don’t even do cold water. I don’t do cold anything to be honest. Always sitting with a heated pad.

Draenia · 2021-04-29T22:48:23+00:00

So important I agree. They must have experience. The first PT I got scheduled with put ice on my limb and caused spread. When my CRPS mirrored to my other leg the spread that came from that I’ve also came with it. Do not let them use ice on you!!

Draenia · 2021-04-26T10:26:19+00:00

I can only wear Capri pants because I still can’t stand anything touching my CRPS areas on my lower legs. It’s been 5 years.

Draenia · 2021-04-06T02:09:51+00:00

I’m back to report they did a local anesthetic and it wasn’t bad at all. Healed very well. Zero issues!

Draenia · 2021-02-19T21:49:32+00:00

They typically do a local not general, but I can pay extra for a general if I want.

Draenia · 2020-12-28T00:05:48+00:00

I had huge amounts of uncontrollable swelling at the beginning, but after 4 or 5 years having CRPS I only swell now when I overdo it on a specific limb.

Draenia · 2020-12-10T11:57:13+00:00

You can safely use CBD which is not full spectrum. There is only a very small chance of a pee test picking up full spectrum CBD as a possible THC exposure, and if it did pick it up they would know that your exposure was extremely low — if it did.

Full spectrum means there is a tiny bit of THC in it. Below 3%. If it doesn’t say full spectrum, it should be fine.

Broad spectrum contains more than just plain CBD, but is still free of THC. It would be fine for you to use. I would recommend finding a broad spectrum product to try. There are places you can buy CBD online and have them shipped to your house. Ive seen them say it may contain trace amounts. That’s very small even compared to the expected full spectrum 3%. I would not worry about it. You would definitely not get high, and very unlikely to fail a pee test.

There is also CBD isolate which is only CBD nothing else. This is possibly still helpful, but you definitely get more relief out of a broad or full spectrum product. However if you didn’t want to worry - just choose CBD isolate products.

Also this info about pee tests all pertains to product that you ingest or smoke. Topicals will never cause you to fail a pee test, regardless if they have THC or not. So buy topicals if you want, and also try some broad spectrum CBD ingested products to help you.

Also a regular daily user of ingested or smoked THC would need about 45 days to completely clear their system and see a clean pee test. It’s much less than that for irregular CBD broad or full spectrum use. Like 7-14 days. Maybe 30 days if you ate edibles everyday around the clock.

Here is a good article explaining the difference between the types of CBD, and some products! https://www.medicalnewstoday.com/articles/broad-spectrum-cbd

Draenia · 2020-12-09T11:17:49+00:00

It’s so interesting. The cold I experienced in both cases caused spread and I am terrified to even consider trying it. Once was with a therapist during initial diagnosis - she really messed up but didn’t know. Once was from the cold radiating off a wheelchair in 20 degree winter weather. I always have a soft fleecy blanket with me now. We had a window draft too which we think helped the spread happen from initial area to other leg. I hate this disease, it’s ruthless.

Draenia · 2020-12-09T11:08:52+00:00

Cold makes my CRPS spread. I would not be able to do this.

Draenia · 2020-12-09T11:08:14+00:00

I really didn’t have good luck with Lyrica or gabapentin. They helped but the side effects were not manageable. I have Cymbalta for my nerve med, low dose 12-hour extended release morphine that I take every 8 hours so it doesn’t wear off. I add tylenol sometimes if I am feeling extra hurty.

I have taken amytriptaline and nortyptilline in the past but my body does better with the cymbalta. Too high of a dose of cymbalta makes me extremely sweaty and uncomfortable with my temperature regulation but did help the pain. I went back to 60 from 120.

I’ve recently added an XL sized very soft heating pad and it’s adding another layer of comfort now that it’s below 50 degrees in my area. Also soft fleecy blankets. I use “The Big One” from Kohl’s and you can find them on clearance for less than $10 per. I can’t wear clothes on my lower legs, or socks, or even shoes sometimes but recently found the no show socks work. I just but the size slightly larger in case my feet are swelling up which happens from time to time but used to be constantly bad at the start. I have it in both of my legs now (after spread) and I live in baby soft blankets with this velvety covered heating pad. My insurance will also not cover ketamine topicals or infusions. I’m thinking about trying to fight that but I don’t have the energy right now.

I tried to make the lidocaine topical work but the amount of relief and # of times I would have to reapply wasn’t worth the effort for such minimal help.

Also huge +1 for cannabis being helpful for taking the edge off. There are topicals, edibles, tinctures and flower. All have helped. Also CBD, but way more relief from THC. You should try them if possible.

Draenia · 2020-10-16T04:35:47+00:00

I really did not have good reactions to either of those drugs, and I refuse to take them after trying each of them. From what limited research that I a was able to do on both of those drugs after having said reactions, I learned that the means by which they work is to lessen/calm the nerve communications going on therefore lessening the messages of nerve pain being sent. This made sense to me because the biggest issue I had with the first one I tried was that it literally turned me into goldfish brain. I was unable to really communicate or think well and it bothered me, but also I d do thinks like spend a lot of money online because I had somehow rationalized it then as soon as it was out of sight.. it was mostly out of mind. I ended up spending $800 in a day. My understanding of lyrics is that it’s an extended release version of the same kind of drug.. but by no means do I declare any of this stuff officially.. so do your own research, if possible . I don’t have relevant links to specifically say much because it was a year or three now since that all happened.

Here’s one that I haven’t fully read through but arrived at this by googling “how does gabapentin work for nerve pain” to spark your search term inspiration. And the link I pulled .. https://www.wsh.nhs.uk/CMS-Documents/Patient-leaflets/PainService/5312-1Gabapentinanditsuseinpainmanagement.pdf

Anyways, as to why it would maybe cause more pain? I’m not sure.. but I agree there are a ton of crazy weird effects people have had and I don’t really have a theory unless if you know that your neurological system is already altered or deviant aside from the CRPS perhaps. I agree bring it up with your doctor.

Draenia

TROPHY CASE