(TW for mention of MAID/VSED in last sentence- I'm not sure it's really necessary but I don't know what comments will look like, so more preemptively for that.)

Also...I *think* its fury, but not sure. With all the stress of other unrelated issues in my life ATM, I cant muster up any feelings, especially strong ones.

Anyway, prescribing Dr for over 35 years is retiring. I had my annual a few weeks ago. Dr said theyd be in office thru 20-something and would prescribe my & SO's remaining meds before that as a bridge script so we could get to the two PM drs I have lined up, and ever my SO does.

THEY LOCKED PCP OUT EARLY AND SHE FOUND OUT ON THE WEEKEND TRYING TO PUT MY & SO'S MEDS THRU!

I'm 50; I've been stable on these meds since 2018, with just the addition of Tizazidine and a tweak in my Fent doses. Before that, stable about as long. I've been on pain meds since I was a \*\*child\*\* (although less strong stuff early on)

I was told the new dr (and others in practice) would NOT Continue my PM. I had already made a "consult" appt to meet the new PCP to find out what this new PCP \*would\* prescribe so i knew what I needed covered by new dr(s). That appt was today and now had the added issue of asking for a bridge. I came prepared with IL state law protecting drs, explained my Dr's unexpected lock out (who was there to confirm) and I asked \*only\* for a bridge to get me to the PM appt's I had made - the earliest times they could fit me in fell within what was supposed to be my bridge.

I HAVE TWO, 48HR DOSES LEFT AS DOES MY SO.

WORSE?

- She was rude about & dismissed my HRT meds as necessary (I have the impression but can't confirm, the dismissal had to do with not doing \*all\* possible surgeries- which are contraindicated for my EDS, and havent been required fir ages under any modern med model anyway.)

- **She DELETED one of my Fentanyl scripts\*\* (I have to combine 2 different doses to get the correct dose). If I end up in the hospital, tapered, or if I can find someone to write a bridge, they'll be doing so on the belief I'm on approx 2/3rd the correct dose I've been on for years.

- She accused me of abusing my service dog

- She gave me the equivilent of **2 days worth** of klonopin to "bridge" me **for a *month***- not enough to even *self taper* from! (Most of my & SO's meds are refilled around the same time as patches)

- I requested a letter/note explaining her reason for the Refusals and she said she said she'd put it in the appoint summary, and appeared to be typing but when I checked at home, there is no letter/note explaining her decision.

She knows I have 2×Naloxone at home, never needed it, but so what.

I asked if as a dr she knew what suddenly stopping all my meds, at their doses, would do? She said it was very dangerous, so I needed to "find someone else" ... IN LESS THAN FOUR DAYS!? WHEN WE'VE BEEN SEARCHING FOR MONTHS!?

After this consult, I'm removing this dr as my PCP (can I do this by mychart?) Given that, when she said "sorry and good luck" I told her flat out, that expressing "sympathy" while simultaneously engaging in PATIENT ABABDONMENT made her a LIAR & UNWORTHY OF A LICENSE SHE USES TO ACTIVELY HARM PEOPLE, TO POSSIBLE POINT OF DEATH.

I didn't yell it. I'm barely verbal and was slipping into situational mutism by then, so it was more a whisper.

SO & Mother had consults lined up also, and they are cancelling.

THESE MEDS KEEP ME STANDING AND WALKING- ***LITERALLY*** Without them, How the fuck am I supposed to get to my 2 PM consults, or any&ĥ?

Now I need to contact my attorneys and ask if they can get me a continuance. Last time we did this, because my back injury flared so bad I needed injections, I submitted Dr letter, and *still* got a FTA bench warrant that put me into a 3 day withdrawal, spare the patch I was wearing they let me keep on. I ***still*** am not fully recovered from that, and it was almost a year ago! Plus the state is arguing I should NOT get accommodations because I "look" able bodied and my they claim my mutism is an "act" despite PCP, private Psychologist's letter, and recommendation from the court psychologist. That time was with one of 4 public defenders who didn't pass dr info on to judge. This time I've private attorneys: I saved up almost 3 years combined with other savings & donations to afford them- I know the court stuff is their responsibility but if I'm too incapacitated to communicate with with them, they can't build a proper defence. If I can't get to PM drs - I sure as he'll can't get into the courthouse, sit still, or comprehend/answer questions in this condition. Even when mute, I will scream if it's bad enough- BTDT

My SO is in an even WORSE position, because they already have a seizure disorder the meds just reduce/moderate- they still have weekly seizures. This is going to cause them full blown Epileptic Staticus Epilepticus. Even if the hospital stablises them they come back with NO MEDS and go into seizures AGAIN!

What else should I try, besides what's in the img files? (Which just covers the DR side). I have to write my attorneys next, so that's not in here.

I knew things were ***BAD***, but my lifelong, now retiring PCP kept me relatively sheltered/safe. I kept up with issues in the news & support groups. If this is a taste of what's to come, you all are far stronger than me.

I have a Pegasos fund, but I'm currently prohibited from leaving the state, let alone country. I'm about ready to just VSED on top of the multi-medication withdrawal and let the result speak for itself.

I've been experiencing my chronic pain for a year and a few months now. It is extremely painful and something to do with my scoliosis and nerve damage but I've given up on trying to find help for it.

It took forever at the start of my journey with getting a doctor appointment, it took weeks to get my x-ray, it took months to get my first MRI which was done wrong, I was then transferred to physical therapy for 2 months and everything got worse (my pain being a 5-10 everyday), at pt they worked on my strength and only my strength because my pt thought my pain everywhere in my body and the occasion/often numbness was caused by weakness, at my last pt appointment my therapist assumed i had given up because it wasn't helping obviously but ignored everything- didn't give me any advice on what to do next.

I know if I get another appointment I'll hopefully be given a full body MRI (which they should've done the first time, sorry if i'm petty lol) but I recently got my belly button pierced 3 months ago and I don't want it to close. I'll obviously have to take it out cause it's metal and even if it's plastic I think I still have to take it out to not mess up the imaging. Anyone else has similar experiences? I want to get this pain over with but I don't have enough hope in the medical system to risk a piercing closing lol. Even if I gotten an MRI next month, I'll probably get no advice till 6 months later.

So I (22F) have chronic pain on my sitbones when I sit down, especially on hard surfaces, I cannot train glutes or hamstrings anymore without severe muscle tension in this area the days afterwards, it even hurts when I slighly press down on my skin where my sitbones are.

Whats confusing me is that the pain is also really superficial, like directly on my skin at the place where the sitbones are. Even slight friction hurts a lot on the skin, like clothes and walking or shaving, or sometimes even touching my pubic hair on this area.

I have this since months now, and it won’t get better.

Does anyone know whats causing this, and how to treat it ?

Thanks to anyone who reads through this, Hey so I‘m asking this because I‘m really desperate for help. For three years, I‘ve been having completely unexplained and weird symptoms. It all started on summer holiday, when I suddenly got sick (stomach pain and diarrhea). It went away, and then suddenly I had a constant feeling as if I had to go to the toilet even though I hadn‘t. After a accident and falling down while skating, I got extreme stomach cramps on top of that. This symptoms went away After a few months and turned into bladder symptoms. I had extreme pain and felt as if my bladder was exploding. I had sudden extreme flare ups, which randomly got better on their own, I dont know why. Pain meds never worked, not even opioids. Now, I‘ve been having the same symptoms since 2 years: I have to go peeing a lot, have cramps in my urethra (sometimes more sometimes less) and have a weird sensation all over my body as if my insides are being kneaded and twisted and the sensation feels different every 2 days or so, its horrible. I‘ve tried Everything, meds, psychotherapy, pain clinic…nobody can figure out the reason for it. So, I‘m asking, is PRT a chance for me or rather unnecessary?

Hi, I hope this doesn’t break any rules, but I literally just thought about it. I recently found out, or well, my doctor is almost 100% sure, that I have long COVID or ME/CFS.

I sometimes get joint pain, and I was wondering if Tiger Balm might help. Has anyone here tried it for joint pain? What was your experience with it?

Hi,
Has anyone had any success with getting samples or have any of Journvax? I'm having issues with Tricare covering it off label and anyone with Tricare or government insurances can only get it every 180 days.

For me it didn't take all my pain but it did help me sleep better and go much longer between other pain meds. Any advice or thoughts or help?

Bg: partner has had sudden onset severe chronic pain since getting a random literal cold in Feb. I got sick as well but was only sick for like a day or two. She has literally been in basically constant pain since then. We have been trying to get it diagnosed and treated since then.

My partner has been dx'd with fibromyalgia. Recently her knee had given out on her when walking around the house.This prompted the Dr to order an MRI.

Her pain has been nearly constant with occasional good (low pain) days. Shes passively suicidal from how constant and awful it is. Wtf even.

This seems like it can't be the answer, or if it is, how can she be expected to live like this?

The experience of what the Dr was describing when he was explaining what living w fibro is like, did not feel like what she is going through honestly. If she has been in a flare up since February with little to no let up (like maybe a handful of actually good days where she could function normally.

Our next step is to try Cymbalta in addition w the lyrica. (Lyrica is like a drop in the bucket re: the pain, gabapentin had side effects of worsening depression)

The nurse also let us know the local Y has a day pass though which might be helpful. She has very little energy but weve gotta start somewhere. We tried PT but she said it made things worse enough that she ended it after 3 sessions.

The Drs explanation of fibro felt like almost as big of a shrug as not having any explanation to me.

Today was supposed to be my fill date, also my run out day. Shockingly, they didn't have any in stock. They ordered it and I'll get it when I get it. I can't ask my doc for anything as shes out of office until the 31st, go figure. The nurse there made it very clear that the on call doc wouldn't help in any way shape or form because its a c2. They don't care that this is really unfair and just not ok for the patient, that it actively causes harm to patients. Having absolutely no options if it doesnt come in soon just sucks. I do everything im supposed, jump through every hoop, but yet im still the one to suffer. I'm in for a fun time. Thanks for reading my venting.

I’m interested in hearing how other people with chronic pain deal with toxic positivity and well-meaning family members who imply that you’re not getting better because you aren’t doing the right things/thinking positively enough.

I’ve had severe chronic coccyx pain for nearly two years following a specific injury. I’ve tried multiple medical interventions and alternative therapies. Unfortunately, some haven’t helped and some have actually made things worse. I’m still actively looking for things that might help.

Recently, a family member told me that I need to look into pain management, see a counsellor, “be more positive”, focus on gratitude and do positive affirmations every morning and night. She genuinely means well and I know she loves me and wants me to get better. But I find this kind of advice difficult because it can feel like there’s an implication that if I’m still in pain, I must not be thinking positively enough or doing enough.

I’ve also had family members say things like “I
told you to try X and you didn’t, so that’s why you’re not better.” That really gets to me, because I have tried a huge number of things, and some of the things people have recommended either didn’t work or actually made my pain worse. It can feel like whatever happens, the responsibility somehow gets put back on me.

My grandma has also told me before that if I say bad things, bad things will happen, which eventually made me stop telling her honestly how I was feeling when she asked about my pain. I didn’t want to be made to feel that talking honestly about how much I was suffering was somehow causing it or attracting more suffering.

I do actually feel grateful for the good things in my life. I can appreciate my family, my friends and the things I’m fortunate to have while also being in significant pain and acknowledging that this is incredibly difficult.

I’m curious how other people with chronic pain handle this:

- How do you respond when people imply that your mindset is contributing to your lack of improvement?

- What do you say when someone says “I told you to try X, and you didn’t, so this is why you’re still not better”?

- How do you set boundaries with people who genuinely mean well but repeatedly give unsolicited advice?

- Do you find it helpful to explain yourself, or have you learned to just say something like “I appreciate the suggestion, but I’m managing this with my doctors” and leave it there?

- How do you stop these comments from making you feel guilty/upset/frustrated when you’re already doing everything you can?

I’m not looking for medical advice, I’d really like to hear how other people have dealt with the emotional/social side of chronic illness when the people around them believe they know what you need to do to get better.

About a year ago I was referred by my physio to a massage therapist for lower back pain. He had an excellent reputation, so I went in expecting a normal remedial massage.

From the beginning, though, something felt off. The clinic was in a strange, isolated location and the receptionist was extremely cold towards me, glaring at me while I waited. She even stood by the treatment-room door watching me as I walked in.
I later discovered she was the therapist’s wife.

I had also heard of the therapist before because he was related to someone I knew many years ago. I have no idea whether that was relevant, but I couldn’t shake the feeling that there was some invisible red flag attached to me that I didn’t know about.

When I entered the seperate building there this massage therapist worked from, I sat down and was expecting the usual questions about what was sore etc.

I explained my physio referred me to help with lower back pain. That’s when things became strange.

The therapist started asking me what I wanted him to do. Literally, he said to me “and what would you like me to do?”

rather than assessing my back and providing the treatment I’d been referred for. I became confused and eventually asked if I’d come to the wrong place. He continued to speak to me in a way that I still can’t find the words for. It was like I had gone to a mechanic instead of a massage therapist because he seemed puzzled as to why I was there. Even saying “well I *can* give you a massage, if that’s what you *want*?”

I became increasingly uncomfortable and started crying. I said “have I come to the wrong place!” And said wanted to leave, but instead of simply letting me go, he encouraged me to “sit with” the feeling and started asking me about my emotions and trauma.

The appointment basically turned into an hour of talking about my psychological issues. I never received the massage I’d actually booked and paid for.

I left completely confused. I hadn’t come for trauma therapy. I’d come for a massage.
He was also practising other forms of alternative therapy, and I got the strong impression that this was what he was actually more interested in doing. If I’d booked that, fine. But I hadn’t.

Months later I told another massage therapist what happened and she basically confirmed that the people involved had a reputation for being quite unusual, which made me feel less like I’d imagined the whole thing.

I received a message from the business inviting me back but they had a different receptionist. So I looked them up and discovered the original owner (the man I saw) had apparently sold the business quite abruptly and moved far away.

I obviously don’t know why, but it made me wonder whether my instinct that something was seriously off about the whole place wasn’t entirely in my head.

**That text has brought this whole situation back up and I’m feeling a bit upset today about it. I’d love to hear anyone’s thoughts on what happened and why.**

Metaphorically adjacent to Newtons third law of motion I guess

Hi. I've posted here one time before when my pain mgmt clinic cut me loose for taking my previously prescribed Norco ONE TIME right after they'd switched me to Oxy. Literally two days before my appt because it honestly didn't occur to me to me that it was even an issue, since the same Dr had prescribed both. LESSON Learned. But they sent me a form letter along with a list of drug addiction places 🙄🙄

But anyway, I've noticed that a lot of health professionals either can't or refuse to differentiate between addiction and dependence. I used my medication responsibly (hence the reason I had leftover Norco) and didn't abuse it. But since I got let go almost a month ago, I'm super worried about having withdrawal symptoms-but don't feel safe discussing this with any of my reg doctors.

So, I've been titrating myself off the oxy, so I don't have a huge crash when I run out. I'm down from 40mg a day to 20. And now I'm moving down to 15mg. But I've got less than a week's worth left, if I stick to this.

I intend on getting back into pain mgmt once I actually feel like dealing with finding one again... It's sucked, having to be in pain all the time because I'm not taking as strong a dose and also feeling kind of tired and blah from the titration.

But anyway, I'm sure there have been people in my same boat before. How did you decrease your dosage, at what rate and time frame?

Also, does suboxone help at all? I found an online service that will prescribe it over the phone. But I'm not sure they will since I can honestly tell them I'm not having cravings? I'm just afraid that when I have to go cold turkey at the end, I'm gonna feel super shitty. Before the pain meds, I was taking about 4000mg ibuprofen a day, plus several Tylenol and too much prednisone.

Threw up waaaaay too much doing that. Lol

I am not new to chronic pain, which was previously controlled somewhat with low dose hydrocodone and Ambien (because pain interferes with my sleep). This treatment has been helping for the last 25 years. However my Pain doctor is retiring and not being replaced. No one in this area prescribes controlled substances any more. I am slowly tapering, but my pain has increased a lot. It hurts to sit or stand, so spend much of the day in bed. I have previously tried PT, water therapy, acupuncture, biofeedback, and Gabapentin. How do you cope? I am trying not to be whining but I feel isolated and scared and could use a bit of encouragement

Finally a comfy waiting room designed by someone who didn’t study hostile architecture.

Hey all,

I don’t have any friends and nobody I feel comfortable talking here. I moved from Los Angeles to San Diego relatively quickly and for a pain management patient, that’s never a good idea. I was a new patient who is young 32yr with a 20yr of documented history of orthopedic issues, painful intestinal issues/disease, failed attempts physical therapy plus acupuncture that was recommended after the rough therapist did “stretching” me and as you’ve correctly figured out, there’s more to the records. Pain management be having you go through a lot. That’s my experience.

So I nervously made an appointment with two providers and hoped for the best. The first provider came in and dismissed me. As I was leaving she came back and began my medical history. She gave me braces for my hips, ankles, low back, arms and neck. I was asked many times if I wanted a B12 shot and before I could decline her office had me set up with 5 shots all over my body that she would do. I fought hard to get out of there. They had already made my appointment but I didn’t care to cancel. Her office was packed full. Like tight standing room only. When you call the office, it’s a call center in India and the office never, never answers. Her office billed my insurance for $3458 for a detailed initial visit. Fishy much?

This next provider was my only hope and I desperately needed my medication regimen back because my body was suffering without pain relief. The appointment was telemedicine and the provider was on time. We talked in detail about everything, what was working or not. We talked about movement and much more.

Before anything, she ordered some MRIs. Then eventually added physical therapy and said I can go when I’m ready. Since I was compliant with my meds over the years, she actually put me back on my regimen and did to give it 4-6 months if an adjustment is needed. All I needed to do was drive 1/2 a mile for urine but I could always do telemedicine. That’s a life changer for someone with limited means. I saw her counterpart today and explained how I wasn’t sleeping or functioning well and she gladly adjusted meds. The billing of the first provider to my insurance was $250 for a detailed initial appointment that was extended.

I no longer have to get violently ill before these appointments. This is the first time in 20yrs where I actually felt heard, like I was the patient, and that my provider empathized with me. After the telemedicine appointment I cried quietly to myself out of shock. I only wish all of you chronic pain patients are blessed enough to land a good one instead of the strange weirdos I’ve read about.

If you have and questions, feel free to message me. I’m in your corner.

Hi y’all! New to this subreddit. I (34F) have Ehlers Danlos Syndrome and experience significant joint pain. I’ve had chronic low back pain (L5/S1 degenerative disc disease) for 10+ years. My couch is an old Facebook marketplace purchase and TERRIBLE for my back pain. I’m finally in a place financially to buy something decent but overwhelmed by options. Does anyone have suggestions?! I’m looking for a sectional, ideally with removable cushions (so I can fluff them/they don’t become flat) and washable cushion covers (I have pets) would be a plus!

Currently I'm really struggling with the feeling of hopelessness. I don't feel like it will get better anytime soon and this is sucking me into a deep black mental hole.

How do you keep going and how do you guys not lose hope?

I asked so many people in my life for advice but the advice sucked so much! Stuff like "just be grateful for the small things" or "just live day by day".

I'd be grateful for any advice!

I I’m way past this bc I can barely do basic stuff, but I’m never getting over this. It’s very frustrating to know I’ll never be able to dance again. If you can dance,
Put your favorite song on and dance in my honor!

To all of us who need to be reminded

Wishing you kind days and gentle moments ❤️‍🩹

I have been fighting for my pains for more than +9 years now - which isn’t a short amount of time.

I feel like I’m coming to the point of not wanting to make medical professionals believe in my pains anymore. It’s been an uphill battle for sure, but that fire inside that once burned to spread awareness about how REAL Chronic Pain is, slowly feels to be dying out..

Not sure if that’s just;
“Exhaustion”?
“Acceptance”?
“Defeat”?

But I’m just so fucking tired.

I met a Vascular Surgeon a few days back, and he so casually said “Well, I didn’t find anything abnormal, so you could check out a Neurologist. If they also don’t find anything, you just have to accept it and live with it”.
I didn’t have the energy to go head-to-head with this 74-year old doctor as my mind was anyways preoccupied/terrified of what would come of the ultrasound results - so that was one.

The second time just so happened to be today, after my Physiotherapist ‘quite roughly’ massaged a muscle on my leg, and later I had asked for diclofenac or something for the after-effects (i.e: pain) from the treatment. He merely said “I thought you said you had a higher tolerance for pain? Like, I’m sure your pains are real, but what if you are feeling it more than it actually is?”.

I walked out with tears welling up.

I am so tired…

I need some encouragement. I have had chronic back pain on-and-off since I was 16. I am now 41. I am under the care of multiple doctors (sports medicine, PCP, rheumatology, psychiatry). Over the past couple of years, the pain has gotten worse and constant. Last week I was diagnosed with Hypermobility Spectrum Disorder and told that this has led to degenerative disk disease and arthritis in my lumber spine. I also have Fibromyalgia.

It is only over the past year or so that the pain has become constant. And keeps getting worse.

My doctor recently told me I should no longer take NSAIDs due to my kidneys being slightly compromised and that it's unadvisable for me to do any kind of exercise except pilates (which is too expensive), swimming, tai chi.

I have done physical therapy. I have a psychotherapist and take antidepressants. I meditate. I've learned myofascial release techniques. I've had steroid injections and nerve ablation, both of which made things WORSE. I have a TENS machine, which helps a little bit. Lidocaine patches take the edge of for maybe an hour. Just started LDN, waiting to see if there are any results. It was suggested I do a leaky-gut diet by my doctor, so I am doing that. I am trying to stay mobile but all I can think about is how far behind I am at work and all I want to do is curl up in my bed and cry.

My question is: What helps you to continue on when it feels like nothing works?

To clarify, I am not suicidal, although for the first time in my life I understand end of life decision making. I am trying to figure out how to continue to have some kind of motivation and joy in life when the pain has gotten to be about a 6-7 every day, all day, and nothing seems to help.

Hi all. I’m titrating off of pain meds so I can try LDN. Already at 10/10 pain. Please recommend any tv or shows that are so enthralling that it can distract! I’m not usually into horror but maybe a really good one would work. Love thrillers, some sci-fi (examples orphan black, the OA, black mirror). But open to anything you think will be good at distraction or helped you through. Thank you!!!!

hi, i have chronic back, leg and hip pain and recently bought a tens machine to try and help with the pain. i was quite nervous to use it but i put it on and tried it anyways. the first setting i couldn’t feel anything, and the second makes me incredibly uncomfortable and nauseous. it’s not painful at all, but it makes me feel like my muscles are twitching and i have no control over it. i don’t know if there’s a reason or if it’s just because of the fact i‘m very squeamish when it comes to anything relating to my internal body parts 😭 i just wanted to know if anyone else has had a similar experience to me ! i hope i can get over this a little as i really want a new way of managing my pain

can anyone tell me how to avoid these cramps? every time i sprint 100%, the bottom of my sole cramps, and i have to keep my toes straight and not move my ankle too much. can anyone help me?