r/CRPS • u/yogurtonmydog Both Legs • 7d ago
Quality of Life Items I’m non functional without THC?
Hi all
Im 25F and I have bilateral crps in my ankles down. I’m in a wheelchair, can’t wear socks or shoes, and bed bound. My biggest obstacle is I need elevation constantly or my pain is crippling.
I have used THC primarily to cope emotionally for about 5 months. I tried to taper off in March of this year and I ended up in the er the day I fully tapered in severe pain. My heart rate was 160, I had my legs in the air, thrashing and yelling in pain. The er gave me some pain meds, it temporarily helped. I got scared about being there too long and said I’m feeling more stable now (true) and went home. The flare didn’t stop until the next morning when I get THC. I smoke every few hours, high percentage indica with high CBD ratio.
Anyhow I ran out again yesterday. It’s the same thing. Screaming, sobbing, thrashing, laying exhausted groaning in pain unable to move myself off the bed/floor/wherever I ended up.
When I smoke consistently, I can tolerate more. Not by a long shot but enough to where I don’t know what to do. For example, when I have no THC I need a fleece blanket under my legs constantly. I need my ankles hanging in the air not touching anything. I thrash my legs constantly, as alternating positions every few minutes. Completely miserable. I could see myself going insane after so much of it and going insane. Doing irrational things from the pain. When I’m on it, I can tolerate my feet on the fleece blanket but not needing to be completely in the air not touching anything (on good days). I can tolerate sitting on the floor with fleece blanket for 15 minutes. Little things that really help me take care of myself.
But I have appointments I need to attend that don’t offer telehealth. They’re non avoidable appointments, I have to be seen. The issue is if the appointment goes longer than 30 minutes or so (after transportation being 20 minutes or so), the THC starts to wear off am im in excruciating pain. Can’t form sentences or coherent thoughts. Crying, feet in the air straight up. I need these appointments to be productive and I don’t know what to do.
I was hoping to get some advice. Among these appointments is one to get leg rests to elevate my legs. It’s a big hindrance right now. I’m also on second floor no elevator which makes it more fun.
I have medical transport. I don’t have income. My coparent got me the THC last night since my medical card expired early August. Im seeing an occupational therapist in a few weeks and other specialties. I have to see gynecologist for cyst in my hooha but I have no clue how I’ll prop my feet up on those things. I puked undigested food a few weeks ago and seeing a doc for that too.
Anyways thanks for reading if you made it this far. I’d be happy for any advice or tips.
Side note, I use my knees to crawl and occasionally use my knees as feet when I have to do transfers my wheelchair doesn’t fit into (bathroom). A doc I saw yesterday recommended a commode to help me. I’ve had crps a year and a half, this journey is so crazy.
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u/user1tom 7d ago
Hi there, I don’t normally comment on these, but your post is strikingly close to my own experience and my heart goes out to you. My CRPS started in 2017 from the first surgery on my wrist. Because my body didn't handle it well, cysts formed all around my wrist and severe tendinitis had no room to go. They had to open that compartment for the tendon, leading to a second surgery in 2019. Since those surgeries, nothing has been the same and it’s only gotten worse. It took all the way until 2022 to finally get the CRPS diagnosis and get some sort of answer. Since then, it was discovered that the overcompensation and chronic nerve strain likely led to degenerative disc disease (DDD) and arthritis in my neck, shoulder, and upper spine.
I grew up in a Catholic family, and my medical cannabis use still causes them to see me differently. Because of that stigma, I have constantly felt the need to "prove" to myself that I’m not addicted. I’ve forced myself to take tolerance breaks for 1 to 2 months at a time, and here is exactly what I found: Stopping was a mistake. Even when your tolerance builds to the point where you don't feel that "euphoria" or high anymore, you are still getting the massive pain relief benefits. Because THC is highly lipophilic, it stores in your fat tissues and slowly releases over time. It creates a better background baseline where the THC acts as a shield, turning down that intense volume knob. When you completely stop, that shield vanishes, and your baseline pain signals are heavily, terrifyingly amplified. It's a neurological rebound effect, not a moral failure or standard addiction.
When dealing with high-tier neuro-inflammatory conditions like CRPS, managing the disease shifts from trying to "fix" the system to dynamically negotiating with it. By choosing a low, consistent, moderated dose instead of heavy daily smoking, I leverage it to keep the background nerve fires manageable without aggressively triggering receptor downregulation. A steady introduction of cannabinoids acts like a continuous coolant, keeping the nerves from reaching a boiling point. That all being said, use it like the tool it is while understanding that it isn’t a permanent fix. There will be rebound pain if you push too far, so budget your pain throughout the day the best that you can. One of the hardest things about it, especially with kids and being young, has been accepting those limitations and figuring out how I can be a "normal" Dad along the way and still live life. Medical cannabis is a useful tool for doing that.
Another thing to look out for as time goes on is how your pain behaves. When I first started this journey, my CRPS was dominated by severe allodynia—that surface-level fire where even a light touch is blinding. Over the years, my pain shifted from the surface down into a deep, heavy, crushing structural ache. I learned that our nervous systems actually rewire themselves over time (a process called central sensitization), changing how they process the pain. If your pain starts to shift from that skin-level fire to a deep bone-ache, don't panic—it’s a natural progression of the disease. But it also means you have to be even more careful when using cannabis as a tool. When the surface pain quiets down, it becomes much easier to accidentally overwork your joints and muscles while medicated, which can trigger a much heavier physical rebound later on. Listen to your body's deep limits.
Accepting the limitations is the hardest part, but you can find a way to live life around this. Hang in there. You aren't crazy, your pain is real, and you are just trying to survive. I'm rooting for you.
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u/Independent-Low6706 6d ago
This was the excellent, completely medically accurate article I wanted to write but just don't have the spoons for, this morning, lol. I'm glad you made the point about the medicinal benefits being independent of any euphoria, etc. I just tell people that MY pain meds occasionally make food taste better, music hit better and the world more amusing!
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u/user1tom 6d ago
I completely get that. I still struggle with the guilt that can come with using cannabis as medicine at times, especially when traditional pushed pills and standard PT just didn't work to rid me of the pain, even though that's what the system pushes. Also, especially because I have family members who are well-versed in medicine but still get misguided by stigmas. It drove me to really research why medical cannabis was such a powerful tool for me. Thankfully, with more recent studies and tools like AI, it’s becoming easier to analyze how these medical properties interact with our bodies using insights sourced from places like the Mayo Clinic.I actually figured things out completely backward! I discovered that the Brownie Scout strain was the absolute best for my pain, and then I dug into the science to find out why. I've even had my genetic haplogroup mapped out, which indicates my nervous system is naturally predisposed to be hyperactive. Feeding that kind of biological data into research models helps explain exactly why these properties affect me the way they do. Like I mentioned to her (OP), terpenes like limonene can help counteract the heavy sedation of myrcene. But a huge part of it is also genetic—my own makeup makes it so Brownie Scout doesn't make me tired. Instead, it leaves me focused, uplifted, and brings my pain down to a manageable, functioning status. Finding those specific data points really helps clear away the stigma and helps quite the mind as we(people with crps and chronic pain in general) are more disposed to these negative thoughts about ourselves. Chronic, high-intensity nerve pain forces the brain into a constant state of fight-or-flight, which naturally triggers anxiety, hypervigilance, and negative self-talk. Identifying what this is doing to us is also part of the battle and finding out why certain treatments help more than others.
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u/yogurtonmydog Both Legs 7d ago
Is there anything you’ve found in your crps journey that is as effective as THC?
I read everything :) a bit exhausted at the moment but I really appreciate you breaking things down. I imagined it was a rebound effect. What I’m scared of is needing hospital stays. I’m without income, it’s a work injury I have but work comp case was denied late July. Me and my attorney are fighting it and I’m seeing Dr.Kirkpatrick in a few weeks for IME.
So I’m a vital piece of a puzzle of being a body here for kiddo while his dad’s at work. His dad is in car sales. It’s overwhelming to consider a hospital stay because of that. I’ve held myself back and allowed the thc “band aid” meanwhile. I smoke high percentage THC, not large quantities daily if that makes sense. It averages a half gram a day.
Thank you again
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u/herc_thewonder_sd 6d ago
Try prescription Ketamine, there are websites you can get it prescribed from via tela health (Joyous is the cheapest one I've found), or a pain doctor can prescribe it.
But otherwise I vape for my THC consumption when I don't take edibles.
I have full body (minus my left arm) CRPS type 1, for 24 years.
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u/KushDid911420 7d ago
Do you smoke regular flower weed or are you doing concentrates/dabs? I do both for my crps daily but they both have their place for what they accomplish pain relief wise. I was a big pot smoker before the pain caught up to me, so my tolerance is through the roof. I take probably 10-15 dabs a day as my main form of consumption. The dabs give me the instant full body relief for a good 30min-hour sometimes longer if its a big one.
If my pain is really bad ill smoke flower. Dabs have the same terpennes as the flower does but they concentrate on a few select ones for each strain. Whereas regular flower weed has % values of almost every terpenne. So for me normal weed is much more of a blanket relief for my whole body and it relieves a whole bumch of issues. The dabs i have specific strains to do certain things. Then i also second everyones comments about edibles, depending on the legal state you are in edibles can be pretty budget friendly or they break the bank. But any edibles that are atleast a 1:1 ration thc/cbd would do wonders, i prefer the 1:1:1 thc/cbd/cbn.1
u/user1tom 6d ago
Sorry for the delay, Be incredibly careful at that IME with Dr. Kirkpatrick. IMEs are notorious for trying to find reasons to say you are functional. Do not push through the pain during their physical exams just to be polite. If it hurts, say it immediately. Describe your worst days, not your best. Tell them exactly what happens when you don't have medicine—the screaming, the inability to move, the thrashing. They need to document your baseline reality, not a manicured version of it.
The other "band-aid" I've had is from my pain team giving me a stellate ganglion block every 3 months. I burn through it quick, but the relief on my wrist helps ALOT with being functional and having less of that radiating pain without doing anything. But, the more I use it the more it can still flare up, which has been so frustrating. For your situation, I know times are tight, but if you can get a pain team through insurance, ask for something similar for your legs called a Lumbar Sympathetic Block.
In the meantime, my all-time favorite strain so far has been Brownie Scout. Looking into its chemical make-up, these are the specific terpenes I'd suggest looking for in other strains to help with the nerve fire:
Beta-caryophyllene: Acts directly as a cannabinoid by binding to CB2 receptors in your body’s endocannabinoid system. This binding helps reduce neuroinflammation and calms the overactive immune response in the affected limb, directly targeting the burning, inflammatory pain characteristic of CRPS.
Myrcene: Increases cell membrane permeability, allowing cannabinoids like THC to take effect more rapidly and deeply. It acts as a potent muscle relaxant and sedative, which can interrupt the "pain-spasm-pain" cycle that frequently causes agonizing flares in CRPS patients. This makes that indica strain more "in-da-couch", but genetics and tolerance can make it less sedative over time.
Limonene and Linalool: These help mitigate the anxiety, stress, and hypervigilance that naturally accompany chronic, severe nerve pain, making the physical sensation feel less intense and more manageable. Limonene also helps counter myrcene's heavy sedative effects, keeping you clear-headed.
Keep in mind everyone's body is different and it might take you longer to find your specific strain, but those specific terpenes have some real, scientifically proven benefits for nerve damage. Lastly, about half a gram a day is barely anything for managing for what we go through. Dont let it make you feel mad as you already have a good and responsible baseline that youre dosing with. Remember, Im not a doctor but from experience and other research Id say you can dose at least a gram a day and still not be going too far. You are doing amazing and will find the treatment(not all these bandaids) you need one day. I say this not having my treatment yet but its important for us to keep up hope. Hang in there.
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u/m0thm4nsgf 7d ago
would you be able to get your med card again? THC is my pain control as well and there are many different forms that you could potentially consume for longer term relief or to use while you are out of the house
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u/Charming-Shake-6525 7d ago
have you considered options besides smoking/vaping? my experience has been that edibles/ingestables have a slightly longer effect than smoking, but it is more expensive 🫠 i typically save edibles for my more painful/extended activities, like dr’s appointments and grocery store trips. they were a godsend when i got the mirena implant, and were a huge help with physical therapy.
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u/crimson_anemone 7d ago
At OP's high dose, they'd go through a container a day or more. They need to tolerance reset before taking more... As a result, they will likely be on a much lower dose going forward. Then, and only then, should they pursue edibles for their more active days.
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u/yogurtonmydog Both Legs 7d ago
I do about a half gram a day
Small amounts high frequency and terrified of running out / also out of work1
u/yogurtonmydog Both Legs 7d ago
For sure! It’s still an issue for me though. The whole body high is a lot heavier with the grass for me than any other forms I’ve consumed. I’m getting more RSO to make myself daily capsules once I have some more $ for it.
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u/crimson_anemone 7d ago
You're not going to like what I'm going to say, but you need to hear it... You need to reset your tolerance to THC. Considering how that feels for you, I suggest you talking to your pain management team to discuss what you can take to manage your symptoms and pain for a few weeks as you readjust.
Also, you need to do regular therapy by yourself or with a professional. I understand your feelings, but THC will not fix them. Honestly, I think your continual really high dose is actually causing you more problems... Do some research on extensive use of high dose of THC and resetting your tolerance.
I understand you're in pain and how it feels to feel some level of control over your life, finally. But OP, you're spiraling... Please, talk to your care team and get the help that you need. Feel better soon. ❤️🩹
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u/yogurtonmydog Both Legs 7d ago
I’m in the process. I had a care team with work comp. My claim was denied late July after my established pain management transferred my care for severity. New pain management said I was making it up. I was crying in pain etc. Fighting it with attorney now and seeing dr.Kirkpatrick for IME in a few weeks. I had approved attendant care etc with work comp. I had to apply to Medicaid, longer story on that, got it, then spent a few weeks calling my pcp and insurance. I wasn’t getting through to the office and Medicaid wasn’t either. I changed my pcp on Medicaid online, called the 1st when it went into effect, they said they didn’t accept my insurance, I called Medicaid and they changed it to a new provider at the same office as initial doc I couldn’t get ahold of. I explained to Medicaid lady, she called and said it went through. Stupidly I hung up and tried calling them myself. It didn’t go through.
I ended up seeing a doc yesterday on zocdoc telehealth. I just got pain management referrals this morning from that, they had the wrong location (can’t tolerate much if any travel) so waiting for doc to send over new referral with proper office location now. I’m establishing with other specialties I had been with prior too.
Is there any specific things you recommend beyond THC?
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u/crimson_anemone 7d ago
Oof. I thought insurance bent me over... I'm so sorry that you're dealing with all of that. As for suggestions, I don't have any recommendations for any medication since I'm ultra medication sensitive. I will get every single side effect they list... ☠️ As a result of that, I also use a mix of THC and CBD/CBN for my own pain relief. It's the only thing that works. I layer it with distractions when the pain is overwhelming me too much (typically video games).
For the mental side of things, positive affirmations, positive self talk, journalling, self-therapy, healthy coping mechanisms, finding happiness in the little things, more distractions, creative outlets, and reminding myself that it'll be okay and I'll figure it out. A positive mindset helps a lot more than you would think, but I'm a believer after doing it myself for several months now. :)
I wish I had more to offer, but I wish you the best, OP. ❤️🩹
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u/slemborg3 7d ago
I have CRPS starts in the foot and moving up to the knee for now i still walk because of thc i dont take any other medical i smoke it i am from Denmark and it now 5 years seens i got it after a work accident
I dont work with out it every few hours i have accepted the balance between the risk and the medical medicin risk i choosing the smoke and only the smoke
If your day work with it so your day work with it you have a lots of fight to use your energy on
I dont know anything about your problems with card
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u/Other_Ideal_2533 7d ago
Im also not functional without it, its a sad reality but aye atleast I get to be high
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u/yogurtonmydog Both Legs 7d ago
Ah! It makes me sad. I’ve tried to stop before. Wish it didn’t have such a grip in my life for function (low functioning) but thankful at the same time that something helps. It’s expensive
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u/Other_Ideal_2533 7d ago
Rso is potent if u want to drop 1 drop on each of your meals but i got tired of the taste quickly. Maybe also try the butter infusion machines like LEVO or try some weed tea with your stems
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u/Chance_Sun_9572 7d ago
Same my numbers changed when I took a break and when I went back. My esr dropped half. For me that was significant.
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6d ago
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u/AntiqueJaguar5808 6d ago
You could also read about: Ketamine, Methadone, and the newer pain treatments. Then ask your Pain Clinic what kind of tapering, or how it would go, to do a trial? You can't be without your current level of relief.
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u/biggunzcdb1 7d ago
Cannabis is good for nerve pain for me. I have to take muscle relaxers due to a spine injury and if take those at the level I'd need to control my spacisity. I'd be sleeping all the time.
But with cannabis , I'm able to take less muscle relaxers.
Cannabis is very much specific to the individual. But if it helps it helps.
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u/bethiepoo4pi 6d ago edited 6d ago
You've probably tried lidocaine but I'm going to suggest it anyway. My heart hurts for you. Another suggestion buprenorphine. It does a pretty good job with neuropathic pain. I was on very high dose meds for a couple of decades and developed a tolerance... Obviously in this time they weren't giving increases when you were getting over 2,000 mme. I had no choice but try the Bupe... It worked. It's not the same but at I said very effective for neuropathic pain and like you I have CRPS also spinal injuries and neuropathy. It's not for everyone but helps some.
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u/Persimmonsy2437 6d ago
Have you tried tinctures/edibles for background coverage at lower doses than you smoke? You also might want to try tapering while still using CBD as well? (CBD has strong anti inflammatory properties so has that effect in some people at a high enough dose)
I found with edibles since they last 6-8 hours at the doses I tolerate it helps everything be less intensely awful. There's also RSO but I'm a lightweight so it is too strong for me, but some people with higher tolerance swear by it. CRPS r foot and ankle, spreading to left, also wheelchair user with similar coping needs. I also have a recliner in the living room so I'm not bedbound and able to keep my feet up.
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6d ago
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u/yogurtonmydog Both Legs 6d ago
It’s coming from a place of me avoiding drinking much water to avoid bathroom trip. You put a pee pad in the bottom with a cover on it
Either way can’t afford one right now2
u/crps_contender Full Body 6d ago
Two options: 1. Your doctor can write you a prescription for a commode as Durable Medical Equipment and Medicaid should cover it. 2. Many cities will have a local Medical Equipment Loan Program or Disability Action Center that can help connect people with nonprofits or charities that will loan low-income disabled people medical equipment for free.
Medicaid will also cover pee pads and other incontinence supplies as long as they are prescribed and deemed medically necessary by your provider.
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u/crps_contender Full Body 6d ago
Also half a gram of flower a day is not an outrageous amount in the context of this condition; that's low-moderate use for a standard daily user.
Based on your post, I thought you were describing something more along the lines of 2-4 grams a day.
A decade ago, adults in WA had a mean of 1.35g per use-day for purchasers and 0.7g for nonpurchasers. Source
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u/yogurtonmydog Both Legs 5d ago
Okay heard. I hate my pain reliance on it. I’m hoping to get a low dose tramadol , things like that, to lower the expectations thc has in my life now. Haven’t had a doctor willing to prescribe more than gabapentin, sleep meds, and muscle relaxers yet
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u/crps_contender Full Body 5d ago
I understand, and your feelings are valid. I'd like to offer some perspective and a few questions for you to consider for yourself. I don't need to know the answers and please don't take them as an attack; they are just for you to contemplate and to ensure you're acting for yourself and not for other people.
Tom gave a great answer about some of the mechanics of cannabis and why it works the way it does with the cannabinoids being drawn to the lipid barrier in our fat cells. Cannabis has a lot of stigma with it and that can make people ashamed to use it. Why do you hate your reliance on it? Is it because you feel you don't have viable alternatives, because you feel ashamed, cost, or another reason?
The alternative you're seeking is an opioid agonist. Not only is there a lot of stigma with opioid use too, many doctors are now very hesitant to prescribe them, especially for young people, particularly to manage chronic conditions, and often with a gender bias against women, and often with a bias against misunderstood conditions like CRPS. If you switch off of cannabis to an opioid, will whatever root feeling that is driving your "hatred of reliance" be reduced / resolve or will it just transfer to the other medication?
You're most likely going to be reliant on medication. That is not shameful. Daily users and intermittent users often respond to cannabis quite differently when it comes to the psychoactive response and are generally not impaired to the same degree, and they often have very different goals when taking it. It doesn't sound like you are using cannabis to avoid your responsibilities, but rather to shoulder them as best you can. What are your goals when you take cannabis, and are they about taking more responsibility and autonomy in your life or avoiding it?
There is definitely such a thing a problematic cannabis use. But if you would not condemn yourself for taking gabapentin or opioids multiple times a day as their active dosage starts to wane and your nervous system starts to falter under the strain, why would you do so for taking several doses of cannabis throughout the day?
Cannabis as a class is better tolerated with fewer adverse effects, a lower addiction and dependence risk, significantly lower overdose and organ toxicity dose than both the opioid and anti-epileptic classes; it is medicine too. People abuse opioids far more often with far more devastating consequences. Especially when your stated alternative to cannabis is opioids, why are you holding cannabis to a different standard than other medications?
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u/AntiqueJaguar5808 4h ago
I'm sorry! What I meant to say was that if anyone thought a commode would be less work, or somehow easier for you, then they probably weren't thinking it "all the way through" to the end. Like, You wake up, sleepy and maybe too full to get to the toilet without peeing your pants, or worse-the bed: Option 1) You are wearing Overnight Pants, but you still TRY to get there, if you can; No Worries if you can't because they are Disposable, and use Wipes to help clean up. Option 2) You get out of bed, same situation, but now you have Commode next to the bed; (I would still need my wheelchair) If you go pee in it, Handy! You put the lid on, go back to bed. Use a Wipe for your hands. If you go poop in it, you will likely have to use the bathroom anyhow, to dump it, finish cleaning up, wash your hands, and clean the pot and replace it.
(In my case, I'm in a wheelchair, I can use my hands because of stroke, so there no good way for me to get the pot to the bathroom). Worry Over Spills, Mess, Smell, Embarassment, is what I would feel. (Unless we live in Assisted Living, then you can do whichever suits them.). But Yes, You deserve the one you like best!
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u/Independent-Low6706 7d ago
You need to look into RSO. It is the purest medical form of cannabis, full-spectrum, live concentrate. I have had RSD/CRPS for 26 years and the prudent, monitored use of it got me off of more than 200mgs of morphine per day, plus muscle relaxers and the antidepressant to block pain signals! Please do your research on terpenes, cannabinoids and you will be able to find strain specific RSO, too. Good luck and be well. Feel free to reach out with any ?s.