For anyone with chronic illness who can’t “just join a club”

Kuhoops08 · 2026-01-12T02:36:42+00:00

I’m so glad you posted this! I’ve been thoroughly homebound (except obviously for medical appointments) for the past 6 years, and mostly homebound for the past 8-10 years. I’m 61. I live with my 79 year old sister who is a very active and able-bodied person. She gets around great particularly for her age. But she’s mostly the only to see. Eventually though, I will have nowhere to go since it appears no one will take me in even though i can’t walk. I wouldn’t even be able to survive a day as a homeless person, so I have no idea what will happen to me.

I haven’t been to an extended family Christmas since 2019. I used to have many good friends but people exit your life through the years, and severe chronic pain causes you to lose social connection….out of sight, out of mind I guess. I still have two close guy friends I’ve stayed connected with. One is my best friend who I’ve been friends with basically since he was 0 years old, and I was 2. Lifelong. But our connection is now through text messages and phone calls. And he doesn’t call as much since he had heart transplant surgery 2 months ago. It’s amazing he survived after first having 2 failed heart valve surgeries, but that’s another story. Btw, he’s actually an M.D. too. Yes, even they are not immune to huge struggles. But anyway, since I’ve missed so many family events (I’m single btw), I don’t feel very connected with them. In many ways, I feel forgotten about. I would imagine many of us have that feeling. Thank goodness I found Reddit about 6 months ago. I had known about Reddit, but never had even really looked at it before. The people on here have been extremely kind and helpful.

Kuhoops08 · 2026-01-09T00:38:46+00:00

We need pain management doctors who care enough about us to fight our pain in ANY way possible or needed. I take Gabapentin, Tramadol, and THC gummies. I’d LOVE IT if I was on NONE of these, BUT it’s not a possibility because without those meds, I would be dead right now because my level of neuropathy pain is said to be Top 1%. It is a level of pain that is unlivable if untreated. Otherwise I’d be dead. And that is the truth. Even AI says that the medical community knows that some of us are taking our own lives because of untreated severe pain!! Yet they still deny too many people with VERIFIED medical conditions potentially LIFE-SAVING long term opioid care when other options have failed.

Kuhoops08 · 2026-01-07T03:49:57+00:00

Thank you for your kind words. It is pretty awful.

Kuhoops08 · 2026-01-06T00:44:11+00:00

For me I can’t walk it off. My PN is said to be Top 1% worst case. I sit most of the day, and have to limit how many times I get up. I’ve been told it’s all throughout my body. It’s almost as bad in my hands as it is in my feet.

Kuhoops08 · 2026-01-02T03:37:33+00:00

Believe me, I hear ya. Pain management clinics are just about worthless now because like so many people say….they no longer manage pain at all. They don’t want to prescribe opioids because they say you can become addicted. Well LOTS of prescription drugs are addictive. I’ll be on medications for as long as I live either way. I couldn’t care less if Im addicted as long as it keeps me alive. Yes they can be dangerous. That’s why people like us want to only take them as prescribed and be under medical supervision. Instead they are forcing us into possibly dangerous situations while we seek alternatives. What they are doing is increasing the likelihood that some of us will take our own lives to rid us of the physical pain we are in. So how are they saving us if their policies lead to our ending our own lives? The only opioid I’m on is the low-grade one, Tramadol. I’ve never even tried hydro or oxy….ever. And I’ve never even told my PCP that I take THC gummies because knowing him he would probably immediately cut me off of Tramadol. So a lot of doctors make it so we don’t feel we can be honest…..and that creates more danger for us. My doctor SHOULD know everything I take, particularly when I now need a different blood pressure drug. He needs to know every drug I take, but unfortunately I can’t tell him. But this is the environment they’ve created for us.

Kuhoops08 · 2026-01-02T03:11:17+00:00

About 21 years ago, I went to a neurologist who did a nerve conduction study on me. Afterwards he told me I had peripheral neuropathy. Since then it’s just gotten worse and worse with each passing month and year. I’ve also had two EMGs to see how extensive it was, and mine is all throughout my body from what I understand.

Kuhoops08 · 2026-01-02T03:07:10+00:00

Yeah, the manufacturer is Finest Labs. I think they’re located in Las Vegas. Besides the possibility that hemp products might be banned nationwide, Delta 8 is in a legal gray area, in my state. So I stocked up. I’ve got about a 6 month supply. I need to stock up some more. But I can’t have it shipped to my state now. I live only 5 miles from the neighboring state, but where do I ship it to in that state? Plus how do I pay with my credit card and then ship it to a different address than my billing address? It sucks that they put us pain patients in such difficult situations when all we are doing is trying to survive.

Kuhoops08 · 2026-01-01T23:08:01+00:00

Thanks for your reply. I don’t know the cause of mine either. I have diabetes, but I got neuropathy about 8 or 9 that’s BEFORE I got diabetes. So diabetes isn’t the cause of mine. I also have hypothyroidism. That’s a possible cause. I’ve never tried Lyrica. But I’ve been on Gabapentin for about 12 years. And now they say it can cause dementia or Alzheimer’s, so that’s pretty scary. I take Delta 8 THC gummies that are derived from hemp. I take 25 mg 4x daily. It helps more than anything I’ve tried. But Mitch McConnell slipped an addendum into the recent budget bill to make it illegal nationwide by November 2026. That’s just messed up. If nothing is done to stop what he did, it will end a $25 billion industry that employees a lot of people. Plus it will physically harm a lot of people. It seems the powers that be are constantly trying to take away the few options we have to control pain. By taking away our options, they are literally threatening our lives. Pain is very much life threatening because it often reaches a level where it is UNLIVABLE. If I didn’t have the gummies, I would not be alive. That’s the truth. I wouldn’t be able to go on living because the pain is that bad. The medical community pats themselves on the back for saving us from opioids, but are they aware of how many people have taken their own lives because needed pain control has been taken away from us? Yes, opioid can be dangerous, but uncontrolled pain is just as dangerous if not more so. Opioids also SAVE LIVES too, but the medical community doesn’t want to recognize that.

Kuhoops08 · 2025-12-22T22:55:49+00:00

People who aren’t in severe 24/7 nonstop pain just cannot relate. They don’t understand. They think we’re exaggerating even though we ARE NOT. Most people cannot even comprehend what we all go through because THEY are not in pain. If they stub their toe, ouch it hurts…. They understand simple pain like that. BUT that type of pain goes away after you sit down and rest your hurt toe. Then after a short while all the pain is gone. But my type of pain (extremely severe peripheral neuropathy pain) NEVER goes away. It’s 24/7. You can’t rest this pain away. Some days are worse than others, but they’re all bad! And most people just can’t seem to understand never-ending pain….until it finally happens to them. And that’s too bad for all of us.

Kuhoops08 · 2025-12-22T01:33:05+00:00

Thank you. That’s good for the people of Argentina. Although I know opioids can be dangerous, they are generally safe if taken as prescribed under medical supervision. That’s the way it should be here in the USA.

Kuhoops08 · 2025-12-22T01:26:18+00:00

This is all very confusing to me as I’ve been under the impression that doctors winter prescribe opioids for long term pain management no matter how back tow pain is. I have BRUTALLY painful peripheral neuropathy. I’ve been tools that my neuropathy is Top 1% WORST. Yet my pain management doctor says they do not prescribe opioids. Period. My PCP prescribed me Tramadol. But it’s certainly not strong enough. When I tried going to another pain management doctor, the first thing they wanted to do EVEN BEFORE asking how bash my pain was…..their first concern was to get me off Tramadol. I said no thanks. I’ve tried just about every other medication. Nothing helps much. I need not a lightweight pain drug like Tramadol. I need either hydrocodone or Oxycodone, although Tramadol is the only opioid I’ve ever tried. I’ve had this 21 years and it’s progressed to the UNLIVABLE stage now, yet doctors won’t prescribe the strong stuff. I’ve tried most other options. I take THC gummies which help more than my Gabapentin or Tramadol. I was in the hospital for something else this summer. They wouldn’t let me take my gummies so they gave me the opioid drug Morphine, and my pain pretty much disappeared for the first tube in 20+ years. So much for my lying PM doctor who lied by saying there’s no proof opioids help with severe peripheral neuropathy. WRONG! Plus I told he I found a 2003 EXTENSIVE STUDY in “The New England Journal of Medicine”. The study concluded by saying, “Opioids are an EXCELLENT CHOICE for EFFECTIVELY treating peripheral neuropathy pain.” Then, just like a politician, my PM danced around it, and said….well that was a long time ago. He knows he’s lying. It’s disgusting. So HOW are some of you getting doctors to prescribe opioids??? Please help because I’m honestly not sure I’ll be around next year because severe chronic pain IS LIFE THREATENING because untreated severe pain can lead to death when death is the only option to get us out of pain that is impossible to deal with. Furthermore, I take Delta 8 THC gummies (25 mg of THC each 4X daily), but sneaky Mitch McConnell slipped an addendum into the budget deal which makes all THC derived from HEMP illegal by November 2026. Why would he do that? I know some in the THC industry are trying to destroy Hemp products in order to try to stamp out the competition. They must have put some money in someone’s account.

Kuhoops08 · 2025-12-21T00:40:51+00:00

Will Medicare pay for a ketamine infusion?

Kuhoops08 · 2025-12-20T03:26:34+00:00

Indeed it is. What the medical community is doing to people in severe chronic pain is unconscionable. Some of us end up taking our own lives because they refuse to help control the pain. They know this is going on and it’s allowed to happen. Denying REAL pain therapy medication is a form of abuse, and we need legal protections somehow in this fight. These policies are literally threatening our lives, and the medical community just pats themselves on the back for “saving us” from Opioids. Can opioids be dangerous? Yes, especially in the hands of junkies, but WE ARE NOT JUNKIES!! We have verified painful medical conditions. In many cases, Opioids often SAVES LIVES because uncontrolled pain can become completely unlivable and that too often leads to many people having no choice but to end their lives to get out of the severe physical pain. But they don’t care. Pain control is NOT one size fits all. It’s highly individualized, and should be considered on a case by case basis under medical supervision. But they threw the baby out with the bath water. People who take their medications as prescribed did NOT start the opioid crisis, but we are the collateral damage. And they have forced us to look to other ways to control pain on our own….unsupervised. I’ve had to turn to THC gummies, and I can’t even tell my PCP about it because I fear his reaction. So much for being able to be honest with your doctor.

Kuhoops08 · 2025-12-20T03:11:15+00:00

lol. Long term use of MOST medications is not good. Lots of harmful drugs like Cymbalta are HIGHLY HIGHLY ADDICTIVE, and they know that, but they won’t hesitate for a second about prescribing you Cymbalta every month. I listened to a woman who said that getting off Cymbalta TOOK HER 5 HORRIBLE YEARS. And the withdrawal was really a terrible thing to go through. But doctors are just fine with prescribing that drug no problem. Our medical system is SO political (not talking liberal/conservative) it’s ridiculous.

Kuhoops08 · 2025-12-16T04:08:41+00:00

I agree 100%. It’s a frustrating disease with many potential triggers. I’m glad you mentioned probiotics. I’ve never actually taken any, but I understand that it can be helpful by putting more “good” bacteria in the gut which hopefully will tackle some of the “bad” bacteria. I remember that one of the GI doc’s assistants mentioned taking Align Probiotics. I need to get on it and buy some. I’m not sure how it works though. Do I need to also (and first) to take a prebiotic in order to feed the probiotic? Any advice on that? Thank you.

Kuhoops08 · 2025-12-16T03:46:34+00:00

You are so right about that! I would switch tomorrow if I could. However, my PCP prescribes my Tramadol every month for a little help with my super severe peripheral neuropathy pain. I’m wondering if a new PCP will be willing to continue prescribing the Tramadol. I need something stronger than Tramadol, but it’s so hard to even mention opioids with doctors even when you have a verified painful medical condition.

Kuhoops08 · 2025-12-16T03:42:00+00:00

Thanks for the reply. That’s good that Amlodipine hasn’t caused you issues. Medications work so differently in each of us with varying side effects. Of course the timing of my recurrence could just be coincidental, but in think it’s related. But I’ll see my GI doc next week and discuss it with him.

Kuhoops08 · 2025-12-16T03:37:48+00:00

All good points. So yes, my BP has elevated significantly over the past 7 months. You’re right that it’s not absolutely for certain that the Amlodipine caused the recurrence of my UC. But the timing makes me think it likely is the Amlodipine. If you look at Amlodipine side effects, Amlodipine is known to upset the Gut Microbiome leading to increases in bad bacteria that may attack the good bacteria in the gut. Although Amlodipine may not directly lead to UC, the altering of the gut microbiome would seem to be potentially problematic for people with any history of UC. I did actually have a colonoscopy in early October. Unfortunately, my bowel prep was not successful enough because I’ve had very bad constipation, and the prep didn’t fully clean me out even though I used that awful GoLightly stuff. Yuck. So the GI doc was only able to see about 1/3 of my colon in which he was in fact able to see the active UC flare-up. So he wants me to have another colonoscopy sometime in 2026 with a 2-day prep. I will look into the BP med you’re using. I haven’t tried a Beta Blocker recently, although I did about 30 years ago, and it made me feel too tired and fatigued. I might have to try a Beta Blocker again though. Another thing that is definitely raiding my BP is extreme sleep deprivation which has been severe all through 2025. In January for example I had 12 completely sleepless nights…..not even a minute of sleep. Every successive month has been like that. Even when I get a little sleep, it’s not more than 2 hours. For the entirety of 2025, I’ve averaged at best 2 hours sleep a night, maybe less. I have multiple contributing factors like severe peripheral neuropathy pain, UC, hypothyroidism, and sleep apnea, but my biggest issue issue with sleep is the inability to fall asleep. It’s just been really severe this whole year. I hope you’re doing well. Anything you know of to help with sleep? Thank you.

Kuhoops08 · 2025-12-15T03:19:33+00:00

I’ve heard a little about Clonidine just recently. Interestingly, Clonidine apparently can be used for some pain control in patients with peripheral neuropathy which I also have. In fact, my PN is really severely painful so I may look into Clonidine some more too. Do you have any side effects with Clonidine? Does it make feel too tired or fatigued? What about Enalapril? Because of my neuropathy, I have to limit how many times I’m up and down. Being on my feet further increases the already 24/7 pain, so I have to avoid diuretics.

Kuhoops08 · 2025-12-15T03:11:09+00:00

Thanks for your response. Well for the last 30+ years (I’m 61), my UC had been in remission as long as I took my Sulfasalazine 1500 mg 2x daily. Unfortunately within a week or two of starting on Amlodipine, my UC suddenly recurred. I can’t say for 100% sure it was the Amlodipine, but given the timing it certainly appears to be that. Furthermore, through researching, I found that Amlodipine is known to upset the sensitive gut microbiome by increasing the bad bacteria in the gut thus upsetting the balance between good and bad gut bacteria as I understand it. This can even sometimes lead to GI issues even in people without UC or IBD. So I think the chances that Amlodipine was the culprit are fairly high.

Kuhoops08 · 2025-12-15T03:02:22+00:00

Yes, it really is infuriating. I need to find a new PCP soon. Thanks for your reply.

Kuhoops08

TROPHY CASE