Harm Reduction The Pain Management Megathread (Chronic and Acute Pain Discussion) v6

[DixiChik]

Thanks for your thoughts, Anna. There's always a cherry on top of my shit sundae! It's just a hot mess.

I had worried and stressed for months of procrastination. I didn't want to contact the St. Louis surgeon because I feared yet another surgery (of any kind). I did not expect him to "punt" me back to a general surgeon, knowing the complexity of this disease. He did.

Have you gotten your pain pump installed yet? I am hopeful for your success in achieving some degree of pain relief.

My 2 cents...Your husband could be right. That's a heart-wrenching decision only you can make. My career is the only thing that sustains me and gives me purpose. Is it possible to cut back on your hours? I had to downsize my workload when I hit 50...Hell, it was TIME! I've worked since age 10...yep. I put myself through university with work study, scholarships and grants. I am by nature a workaholic.

My husband wanted me to retire at 50, but I couldn't conceive of "retirement". I was willing to convert to contract only and 4 day work weeks. I'm content with the compromise, as I LIVE to work. Now, IF ONLY I could eat, sleep, and poop...

 

[closeau]

Geez Dixi, we have opposite problems. I hate work, lol. I have to go back part time cause disability aint getting it. So good to hear from you. Im so sorry youre going thru all this. Everybody has to eat and poop and it sucks you cant. Youll be in my prayers and please keep in touch. Best wishes to you!!

 

[DixiChik]

Hey closeau...THANKS for your well wishes, my brotha. Right back atcha! I read that you are back in PM with Duke, right? I was afraid for you to get out of sync with your team regarding your pain. You are SO VERY blessed to have that level of compassion with a renowned medical center. I'm envious, but not in a malicious way. I would give pretty much anything to get that kind of help right now. I'm relieved that you decided to forego the cannabis route in favor of PM team. You've been through SO MUCH with loss, illness, upheaval yet you persevere. I admire that, friend.

The St. Louis endometriosis surgeon I've consulted was previously at Duke. Although I feared more surgery, I had resigned myself to submitting to an exploratory laparoscopy. I'm just SICK that he's not proactive. Only 100 of 52,000 GYNs can identify this disease, much less treat it. There are so many women who are suffering needlessly due to medical APATHY. There are many, like me, who have been butchered by multiple surgeries...yet still suffer.

Sorry for the whine...8)

It's pouring rain here today, with flash flood warnings. Lord help the folks in Louisiana whose homes are flooded to the roof tops.

It brings back memories of the nightmare variety. My husband and I designed/built our first home in 1982-83. We moved in by September to what we thought was our "forever" home. On December 3, 1983 the levee broke and flooded our house upwards of 5 feet deep. We were out of town. Everything we had was ruined, including my husband's generational guitar collection...Martins, Strats, everything. Our neighbors found our Siamese cat floating on a fire log! Thank goodness they rescued him and kept him safe until we could get a flight home.

On a lighter note...I love my work because I'm blessed to be able to do what I love for work...architectural design. It's my passion.

You take care, too. You know where to find me, anytime you need a friend.

 

[closeau]

Thanks Dixi. Not only am i blessed to be 10min from Duke but i have an awesome pain provider. Shes very compassionate and understanding. Im so glad im off the weed and back on my meds. I feel so much better physically but mentally sharper. Im planning on moving to my daughters town next year and im really nervous about leaving Duke. They have litteraly saved my life 3 times in last 2 years. I wish you could get here cause the GI drs here are the best in the country. Maybe you can get here one day. Sounds like it would be hard to travel in your condition. I read whats wrong with you and my heart goes out to you. I wish somebody there would do something for crying out loud. I just wanna say you are a testament to class and compassion. You are in immense pain and have all kinds of internal problems and you still get on here and shine positivity. A lot of people could learn from you. I cant imagine what a toll this takes on you mentally. But you still have time for us and i cant speak for them but i greatly appreciate it. You deserve the best care. Its that thing where dirtbags are problem free and good people like you have to suffer. Faith is hard to execute but try to put your faith in whatever it is you believe. I myself have you in my prayers everyday and i pray you get the help you need. Thanks again and just do your best darlin. Im always here if you need to talk. I cant relate to what your going thru but have had my share of problems. You know where to find me. Peace and Love!!

 

[Runtoparadise]

^Closeau, this PM you attend, is it a single dr (or numerous drs in the pain clinic), or a pain clinic/unit type where they run multidisciplinary programs?

I'm curious as to how things operate in other countries, I know here in OZ the general consensus is that research now supports non opiate PM for chronic, non cancerous pain.

Both my pvt dr/clinic & the public pain unit use psych, physio, mindfulness, cbt, pacing etc and run programs for up to five wks to wean you off your "unhelpful" pain meds & teach you not to rely on medication to manage your chronic pain.

I think as SKR once mentioned, looking at the big picture,- we're out laying big bucks for little return with these specialists. So I'm thinking of ceasing my contact with these "business's".

Rtp

 

[closeau]

My pain clinic is an offshoot of the hospital here. They have one main dr who is the director and hes really cool and PA's under him then on other side of building theyvdo biofeedback which is just ways to cope with pain without meds. Just breathing and shit. Its really strict there but onvce youre in and follow the rules they treat you very well. Its not some krusty old place with one dr. Being connected to hospital really helps cause they can see everything about me. I love my PA. Very compassionate and understanding. Im very lucky. What country do you live in?

 

[Mracid]

Hi I have 2 chronic pain 1 on a really not nice place to have one when you are a men the other one is muscle pain and cramps. The ball pain started a year and a half ago, with an epididymitis and it never left(I am so lucky), and the muscle pain and cramps come from before I can remember things.

The funny thing is that when I saw a doc he made me pass TONS of tests and found nothing so he concluded that I had anxiety and Somatic symptoms because you know it can't be that he missed something, went to a Psychiatrist, told him epididymis pain along with muscle pain/spasms, got meds (Benzos, thank god I didnt end up with antidepressant as I react REALLY bad to them), then now that I am 18 swiched psychiatrist and now he wants to get me off meds because he says I have no anxiety.

So overall I have pain, I got anxiety med, but all he wants to do is get me off them and on antidepressants, so basically either psyciatrist or general doctor think I have anything.
I feel like the ball in a ping pong game. Still I get no appropriate treatment and feel 24/7 pain without the possibility of reducing it. And its in my ball. I mean what the hell?

I am really lucky I have cannabis but I am at a point where my money can't keep up my tolerance build up. I dont really know what to do.

 

[closeau]

Mracid, that sucks. Something had got to be wrong down there. I would go to an ER and tell them exactly what you go thru and maybe they can do different tests. I think a CT scan with barium would show the problem. I mean, you dont want them to miss something that could become more serious. Plus they will at least give you meds to make you comfy and refer you out to different Drs. Who the hell is this Dr who says you dont have anxiety? Thats crazy!! Benzos will help your anxiety but not your other problem. Thats just what i would do myself. Try to get the right Dr who will treat all your symptoms. Wish i had better advice for you. Ball pain is scary cause could be sign of something serious. God forbid that is the case but you have your whole life in front of you dude. Keep us informed and PM me anytime. Good luck man!!

 

[morphine-dreams]

So I just got diagnosed with interstitial cystitis and was told that my quality of life with be similar to that of a chronic cancer patient :/

Next step is a pain clinic I guess, I've been managing it with PST so far but it'd be nice to have a script and something for breakthrough pain. Anyone here with the same condition and which meds do you use for it (opioid and not)?

 

[Runtoparadise]

I'm a female but both the new posters pains sound incredibly bad!!!

Apart from opiates,- NSAIDs, paracetamol, steroid injections or oral prednisone.. There's not a lot tbh.

Lignocaine patches, ( tho obv difficult to apply), nerve blocks/epidurals?

It's late here but I hate to hear of your suffering. Any more thoughts & I'll get back soon,

Sorry for your suffering

Rtp xx

 

[Mracid]

Mracid, that sucks. Something had got to be wrong down there. I would go to an ER and tell them exactly what you go thru and maybe they can do different tests. I think a CT scan with barium would show the problem. I mean, you dont want them to miss something that could become more serious. Plus they will at least give you meds to make you comfy and refer you out to different Drs. Who the hell is this Dr who says you dont have anxiety? Thats crazy!! Benzos will help your anxiety but not your other problem. Thats just what i would do myself. Try to get the right Dr who will treat all your symptoms. Wish i had better advice for you. Ball pain is scary cause could be sign of something serious. God forbid that is the case but you have your whole life in front of you dude. Keep us informed and PM me anytime. Good luck man!!

I knew I wasnt the only one that would find this situation suspicious... Thanks for confirming that to me. As for the multiple tests I think I got that covered up, I think its more like a blood vessel squeezing a part of my epididyme making it feel like a crocodile clip is clipping the end of my nut, really distasteful, even if that theory made my doc look at me like an idiot.

Meds that makes you comfy are not for adults that are not over 25. Unless they have diagnosis, so no matter your pain you get nothing unless we know what is going on there and since they found nothing well eh thats all I got.

The new psychiatrist is a narcissitic closed minded person, I dont expect much from him, which is Why I am seeking for a private doc.

The problem about getting doc that would treat all my simptoms, is about finding one believeing what I tell him I feel. Cuz all I have heard from most psych are: No you dont do that for that, you do it for this reason and no matter what you have lived, my outside 30 min refelxion on it is more accurate than your personnal experimenting them. He is an arrogand ignorant douche.

Finding private doc can be long. But I hope he will be the solution to my drug money problem and inadequate medication problem.

 

[closeau]

I hope so too man. Finding the right dr can be a bitch. Im really spoiled. Since all my issues started in ER and hospital ive gotten reffered to some really great drs. My surgeon and pcp are great and my hemotology PA is great. My shrink isnt connected to the hospital so ive been thru some bad ones but have a great one now. Its just luck man. I hate to say that but its true. That guy sounds like a deuche. I wish they could fing root cause of your problem. I think you need a pcp so he can order tests and refer you to a different shrink. I know thats easier said than done. Keep plugging away. Good luck

 

[Mracid]

Thanks for your support its kinda feeling good having a place to talk about the pain without creating an akward moment in a converstation or having some1 that feel perfectly fine saying won't you stop talking about negative things. I think avoiding negative things is as hurtful so having a place to talk and people to listen and have some compassion is satisfying.

I also totally agree with the luck thing in the medical world, and I can tell I AINT LUCKY.I am In a constant fight against letting my guard down and becoming Opiate user and addict. And I won't let it win !

 

[closeau]

Yeah man, i hate to hear you have no luck. Something gotta be happening to cause that pain. You need another scan but how? I understand your dillema man. Your def in a tight spot. I dont even have advice for you and im sorry for that. As long as you take the opiates right youll be fine. Your body will become addicted to them but your mind is safe until you take a handful and get high. Thats when it grabs your mind. Ive been on both sides and im hapoy today i take them right and they help my pain. Opiate highs feel great but it aint worth it. Its gone as quick as it comes. Ive never done heroin but im sure its the same. I got a best friend who was a h junkie for years and went to rehab finally and hes getting ready to pick up 6 years in NA. I wish i didnt need them but i recently got off them and it was hell. Withdrawl and intense pain. Im lucky i have a great pain girl and she put me back on meds immediatly. I sure hope you find a solution to your problems. Most of the folks on this thread are awesome and ive gotten to know some of them. It is great to have a place to go and talk about your problems and pain with no judgement. We all have pain out here and some more than others but just keep logging in or message me anytime. Good luck man.

 

[Mracid]

Thanks for your support, but luckily For the last year and a half cannabis has been my pain med So i'm free from opiates for now, but I know I wont get doc to prescribe me anything so my only opition in the eventuality that it is too much intense is either buy Street H and use it oral or down a shitload of DXM or any Accessible NMDA antagonists. Both those solution I dont want to have to use them. I'd rather get rid of the pain instead of reducing its intensity.
I wonder if cannabis would become legal medication in canada, I'd still have these problems... Eh thats the world we live in.

I think i'm in a turing point of my pain, either get medicated (get lucky) or get down the road of painless quicker death which is still better than constant pain in your balls!

Enough about me, Chronic pain is a BITCH and I do not know why there is not a bunch load of researches on this. It is a poison in our society, incapaciting good people, ruining lives.. I Hope all of you get a sense of satisfaction and feel free of living a full life.

 

[DixiChik]

Hey there PAIN PEEPS...Welcome Morphine Dreams and Mracid! Wow, you both are dealing with some cringe-worthy pain aren't you?

MD...IC is indeed a painful condition. I feel such empathy for you, as I know what you're dealing with. Often with my disease (stage 4 endometriosis) I too suffer with bladder, ureter and kidney issues. I have been diagnosed with IC, but in my case it gets "lumped" in with the chaos of this evil disease. I'm assuming you've seen a URO?

Mine was such an asshole the last time he examined me. I made primal screams as he catheterized my bladder. (They thought discussing tennis would distract me...go figure) I'd like to shove tongs through his pee hole and talk tennis! GR-R-R-r-r-r! He further insults me when he fails to "find" my bladder on sonogram because of "all that junk". Hey, here's a thought...I'm not celebrating a gut filled with lesions and adhesions that are choking my bladder and bowels. How about you do something to help me, if it's not too much of an inconvenience for you, "doctor".

Mracid, I'm concerned for you. Pain in your testicles can be indicative of many things, none of which should be ignored. Don't quit until you find a doctor who will listen. I'm certain you've seen a URO? Even if so, seek a second, third, fifteenth opinion, if necessary. The source of your pain MUST BE identified. I am a firm believer that if the "cause" of the pain can be eradicated vs. "treating" the pain, it's a win-win. You should not be feeling this pain in your testicles. I'm not comparing my situation, but FRANKLY it was a GYN ONC (cancer surgeon) that finally listened to me, with my pain caused by lady bits. Do you have access to a URO ONC? If so, please make an appointment ASAP. I'm not trying to scare you, but you can't be too cautious.

RTP, isn't your NEURO appointment tomorrow (17th) or am I wrong on the date? I'm sending positive vibes your way in hopes that you will find answers. Geez, your seizure sounds awful. You're right about having your friend nearby to take the reins and call 911. My hubby is the only "friend" who would help me. Most folks I know would leave footprints on my chest, and reach for my wallet to pay the lunch tab.

It's a crying fucking shame that our healthcare system has become so filled with apathy and accusations. I have struggled with ego maniacs (male/female) in white coats for over 2 decades. There were only 3 who ever helped me. Two of them have since died. One is suffering with Parkinsons and no longer able to perform GI surgery. He's such a genius in his field and could have been such a lifesaver for me right now. HE would find out what's choking my colon and causing the partial bowel blockage.

My appointment with PM doctor was tomorrow (16th). Just got a call that he's out of the country (yep). I'm rescheduled without consultation for 4/13. Gee, thanks. Sadly, it doesn't make much difference. He has fallen way short of "managing" my pain. My case is complicated. I'm not special, nor do I claim to be. However, my disease is complicated at best and suicide-worthy at worst. I explained my "enigma" to him before he agreed to take me as a patient. I'm seriously considering terminating my contract in writing, leaving on good terms...in case I have to go crawling back some day.

Closeau...How are you feeling today? Good, I hope. The sun is finally shining here after a week of dark, rainy days. I had to wear my Muck boots to the job site today...Not fashion forward, but necessary! I'm back home for the day...going to sit in the sunshine on the deck with my Dal and try to focus on the positives in my life. I'm trying so hard to stay on top of this mind-bending hopelessness and pain. I walk through the halls of my mom's nursing home (for 10+ years now) and see how this story ends.

My siblings IRL abandoned both my mom (and me) when she had nothing left to give. I'm solely responsible for oversight of her care. They don't even call or text to pretend they give a shit. It's a tough road to travel alone. My husband of 35 years is loving and supportive, but I don't burden him with those issues. It's nice to have my cyber siblings here to talk to. Whether I'm online or not, ANY ONE OF YOU can contact me if you just need a friend to talk to. I care.

Shout out to SKR, Annabanana, SNod, Steph, Shroom, etal...Hope y'all are feeling the "Sound of the Sunshine"! That's my happy little song...makes me smile even at my lowest.

((Hugs)) to all!!!

DixiChik

 

[closeau]

What a great post!!! Youre such a compassionate person despite you health. Thats a true friend!!! Your husband is lucky to have you. Sucks your appt got rescheduled. Its just a dam shame they cant do more for you. Pain and surgically. Im doing fine. Pain stays around a 6 which ill take all day. We have a major pipe leak here at house so water is off. No showers, laundry, flushing toliets, and i cant even wash my hands after doing my ostomy. Gross. I just use a towel and soak my hands with medical grade sanitizer. So that sucks and im having terrible financial problems but im working on it. Its nice not having an appt this week. Next week i go get blood checked with my clots. The parking and everything there is just a mess and all i go there for is to have my finger stuck. Crazy. So enjoy your day outside. Its nice here too. And mracid, listen to her man. Get 15 opinions if necessery. To all, have a wonderful evening!

 

[DixiChik]

Hey Closeau...I'm back inside due to fucking mosquitos! Between the fire ants, mosquitos and my relatives (cockroaches)...

Sorry to hear about your water/sewer situation. Our sewer line backed up a week ago (of course on a Friday night). My husband confirmed that our lines were clear, but the blockage was between our house and city sewer. We couldn't get even a voicemail at the City Hall, of course. It was about to get really bad, as it was backing up in our lower bath tub. Funny, but not, my husband called the police on their non-emergency number. She was most kind and said she'd contact water/sewer dept. immediately. The truck arrived within 15 minutes...crisis averted!

But then the clean-up began...Shit literally happens, even though I can't. Yep, gross. Thank God for BLEACH!!?! Hopefully, you'll get your pipe fixed soon. Can you access water from your landlord, or is the whole system askew?

Are you eligible for any kind of assistance? Housing? Medical? Utilities? Food? If so, apply for all of the above. There's nothing for you to be ashamed of. It's not a hand out, it's a hand UP. I so wish you could get into a place better suited to your needs. You have enough to deal with health wise, without the crappy (yep) landlord.

 

[maxximus5431]

it still hits the GI tract

Dixi, a new thought, a pain pump. Not spinal cord stim.

Doesn't affect stomach or brain, bypasses both.

Have you looked into this?

Best,

Rtp

Hey runtoparadise, even though the pain pump is an alternative form of the drug entering your system it stil acts the same. The opiate will attach to the mu receptors in both the brain and bowel. Thats just how the anatomy works. I hope this was helpful in any decision making.

 

[Mracid]

Thank you Dixi, Yes I have seen a uro, infact 3 , along with 3 generalists 2 onco and i'm now heading towards my 3rd neuro too. I am only 18 and this is the second problem I have that involves chronic pain, first one was in the back and is still popping out sometimes, its spasms/cramps due to muscle tensions (nothing to do with it I tried litteraly everything).

The sad thing is there is to sides of the medical medal and I kinda am the ball in a ping pong game involving those couterparts. Physical Dr send me to Psych Dr which sends me to Physical Dr which sends me to Psych Dr... And it never stops.

It was the same routine when my back pain started 5 years ago.
So I thought I'd take the matter in my own hands, for the last 3 years I have been searching (for fun) on the effects of psychedelic drugs but it kinda overflowed towards biochemistry. With this knowledge I can at least manage my pain with the minimal long term impact. I will keep looking for an answer but I guess I simply stopped hoping for it..

The wierdest thing is that Chronic pain isnt my worst I dont know what to call it, since it seems like it can't be diagnosed.
You know when you look at the sun, your head hurts and you feel overloaded, well I got that feeling ALL the time. In ALL my senses, the worst is hearing. I tell you I can hear a car starting around the block. I have learned to be able to focus despite my overactive senses but its not without a cost, my comfort.

All I sure know is that sedative helps and I am Ironically INCREDIBLY tolerant to them. Cannabis is the best even tho my tolerance is too high.

Having someone to believe me is reassuring, making me feel less like a fool for ''having a pain that is not there''.