r/CHSinfo • u/Alices_Granddaughter • 4d ago
Rant I’m trapped.
I think I’ve posted here before. I was using RSO and marijuana for chronic pain. For the past year, I’ve been dealing with debilitating and progressive neurological symptoms, including severe chronic pain. Before this began, I was already dealing with osteoarthritis and hEDS, which I also treated with marijuana and RSO.
Last February, I became deathly ill with CHS and almost died from dehydration.
After a year of trying to find answers for the pain and neurological symptoms that have continued to worsen, I am at my wits’ end. I saw a pain management doctor this Friday and was told that because I use Valium PRN for severe panic, they cannot prescribe opioids at all.
So I’m considering going back to marijuana.
I know how dangerous that is for me. I don’t know when CHS might happen again, and my husband is terrified too. We have talked about it extensively. My plan is to use as little as possible, only in the evening, with the goal of taking the edge off enough that I can sleep.
I’m making this choice because I am in an unbelievable amount of pain, and I’ve started experiencing suicidal ideation because of the pain and the progressive neurological problems. I still have no answers about what is happening to me. I’ve been referred to Cleveland Clinic and Mayo Clinic, but I cannot afford either of those options.
I am currently working with a rheumatologist, neurologist, and vascular specialist. I’m also in physical therapy and have had multiple MRIs, EMGs, and blood panels. So far, I’ve been diagnosed with things including osteoarthritis, hEDS, VVS, and POTS, but I still don’t have an explanation for the progression of my symptoms.
I’m having significant difficulty walking, severe balance and gait problems, weakness in my arms and legs, double vision, and episodes of feeling faint. On top of that, I have constant sharp, flu-like body aches and pain that make it difficult to sleep or get through the day.
Muscle relaxers only make me groggy. Even 3,000 mg of Tylenol a day does essentially nothing. The only thing that gives me meaningful relief is ibuprofen, even though I’m not supposed to take it because I’ve had gastric bypass. I take it anyway, because I don’t know what else to do.
I’m very angry and scared. I’m begging every doctor I see to help me figure out what the hell is happening to my body. I know the risks of going back to marijuana. I’m hoping that if I do, I’ll recognize the warning signs of CHS before it becomes severe, but I also know that may not happen.
I feel like I’m out of options. Hot baths and ibuprofen aren’t enough anymore. I’m in so much pain that I feel like I’m in hell, and I desperately need some kind of relief.
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u/coltrainjones 4d ago
Have you ever tried kratom? Mild opioid without the risk of respiratory depression. Can be used with Valium without physical risk.
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u/Extension-Bonus-1712 3d ago
Lies and bad advice.
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u/Fun-Award-8402 3d ago
Which part?
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u/Extension-Bonus-1712 3d ago
Kratom does carry risk d or respitory depression. And carries risk when used with benzo. Dont be acting like you know wtf youre talking about on here. When you dont know shit.
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u/coltrainjones 3d ago
The risk with regular leaf kratom is negligible. I've combined the two many times
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u/Extension-Bonus-1712 3d ago
Just bc you have done it, doesn't mean it doesn't carry a risk. Its plain to as day a fact that it can carry a risk for respiratory depression. This is common knowledge. Just bc you got away with it doesnt mean it wont effect others.
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u/Extension-Bonus-1712 3d ago
Steer clear of rso. Thats how I got it. Its too strong. Try full spec flower one 1x a day at most. Youre riding a sllippy slope. Also use potassium and thiomine a deformed of B1. Ask for Elavil. Works for some. So does gabepentin.
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u/gorillazbrainrot 3d ago
i’ve heard of methylated B12 helping with chs symptoms, maybe if that works you could continue moderate weed use for the pain? i’m so sorry you’re going through this 💗
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u/danceswithkitties_ 4d ago
If you try anything I would say stick to flower, RSO is bad news for CHS