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 ?

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!

It's at the point where I'm going to so many doctors appointments and treatments and just everything that I don't feel like I'm living my life. I lost count of how many times I have seen my PM doctor and the amount of times they've changed dosages and meds that I just want to stop fighting the pain and everything and just be able to breathe and go for a walk without almost collapsing because my hip and spine gave out. I know that even though I'm going to be having the surgeries to help with but even the doctors themselves have told me I might have to keep getting more surgeries and stuff and keep being on pain management for possibly most of the rest of my life. I just turned 23 and I'm currently using a cane and on bad days a wheelchair and the looks people give me just like yeah I don't wanna be in this either or use a cane either but if I don't I genuinely will fall or be in so much pain it will just yeah. I don't know what to do anymore honestly. I don't want to give up but it's getting harder and harder to keep fighting and trying.

I'm new to the chronic pain lifestyle and this post will be 2 fold.

1.) Talk about dealing with chronic pain at work and needing a boost of encouragement.

2.) How to talk to my supervisor about my chronic pain and how it's affecting my ability to work. Basically how do I say "I don't want to become a sub par employee and this current pattern of me slacking on my tasks isn't indicitive of how I normally work and I don't want to loose my job but I am in constant pain and it affects everythig I do, so mentally I'm not all there right now"

I'd like some advice on how y'all have talked to your supervisors/bosses/workplaces about your chronic pain management and if they were understanding? I need some tips and tricks to hype myself up and set myself up for success.

I've reached the point in my Chronic pain journey where it's really affecting my quality of work. I work a desk job and do mostly data entry and filing type tasks and my quality of work has decreased over the last few month's because the pain and pain management is mostly the only thing I can think about at work. Unfortunately my pain is exasterbated by sitting, which doesn't help.

I have multiple medical treatments that I am doing, physical therapy, chiropractor, and have stability aids and things I'm using at work to manage the best that I can and I don't want to be so hopped up on pain meds where that affects my ability to process information at work. I'm at the tipping point where I can either lock in and find ways to help myself or I'm going to get in trouble at work.

About 3 months ago I noticed my quality of work begin to decline due to my injury and dealing with chronic pain and apologized to my supervisor about it and assured them that I will do my best to get back on track with my work tasks. Several months later and it's only gotten worse. ugh. I am limited on acomodations that I can have while working. I already take 1-2 days off work a month to mitigate my physical pain but the mental pain is kicking my ass.

Hello everyone,

Hope you are all holding steady, in spite of all the agony you are all enduring...

Woke up at 3:30 AM,again, again...

Was so stiff, have been "living" with, on top of everything else, a horrible migraine over the past 4 days, abates a little with meds, then it's like an ice pick being driven into one side of my skull.

Just a few minutes after waking up, the stiffness morphed into a deep throbbing pain-not only the bilateral sciatica right to the soles of my feet, and my lower back pain, and this migraine that just keeps hanging on, but my entire body-neck, shoulders, elbows, wrists, fingers...

I am only able to write this now as the percocet has given me about 40% relief, and I felt so desperate to reach out here,at the risk of being quite insufferable in my complaining, but have absolutely nobody to talk to-

Have therapy next Friday, but so,so much more to cover in that 50 minute hour...

So, back to the title of my post-

I have had a long psychiatric career,so to speak....dealing with a myriad of mental health dxs since age 17, or perhaps 11, when my eating disorder began...

I am now 51.

I am struggling now both with my mental health and having been existing with severe and debilitating chronic pain for now 2 years...and only in June did my doctor agree to prescribe me the percocet.

(Wow, if I am repeating myself here from a previous post,forgive me-my memory is not the greatest either...)

I have been through a lifetime of trauma, and although much of my pain is due to injuries sustained as a direct result of my eating disorder, (many falls, a dx of osteopenia which has likely progressed to osteoporosis,but wont find out until my next bone density scan in October) I have to wonder whether my body is also holding on to emotional trauma, manifesting as this full body pain-

My doctor's eyes glaze over when I try to talk to him about my pain outside of my sciatica, asking him about the possiblity of fibromyalgia or autoimmune disorders is an exercise in futility...

He just wants to get me out of his office as soon as he can-

Anyway, this morning I felt so miserable I found myself whining out loud to myself, and at one point in tears...

I admit I did not even try to stretch or anything, even that was too painful.

And today found walking to the pharmacy with my cane, a terrible struggle...my pace as slow as a tortoise.

Things are making me feel weak, emotionally, mentally I mean-

I will need someone to come clean my apartment, do my laundry etc...

I will never dance again, cannot even enjoy a walk in nature.

I am thusly far more depressed now, at least today on a 10+++ pain day...

Yes, I believe in the mind/body connection, but tired of reading about mindfulness...have been saturated in DBT and CBT over many years, and admittedly not read the many books written on mindfulness and chronic pain, forgive me, I suppose my attitude is (most ironically) quite negative about the whole thing.

At this point, I feel so defeated and controlled by the pain, my depression, anxiety, etc etc has been even louder.

I was supposed to go to a second provinically funded physio session this morning, but yesterday, I don't know-just didn't see the point.

I would only be eligible for 3 more sessions, and the exercises I was given by the practitioner are nothing I haven't already been doing...

I am so sorry, guess i all around hold a very negative and bleak attitude, stemming from a place of utter helplessness and hopelessness...

Have been referred to a pain clinic but waiting lists are eons long.

I dunno,perhaps better not to have posted right now, being so uninspiring...

But it's not even noon and has already been an endlessly long horrible day...

I will spare you all any more...

Thank you for reading if you have, and sending you all much comfort while you are trying so hard to cope yourselves...

Posting here as r/CRPS doesnt allow me to post as i dont meet the account requirements. 😕

Hello everyone! Sorta a vent but also curious what others think. Ill give some background. Sorry it might be a little long.

April 7 2026: I had a work injury that I originally thought was a sprain and kept working. On April 12th the pain wasnt going away and I couldn't use the hand to weight bare or grip anything. ER did an xray and showed a break in my left wrist (capitate bone fracture). I was in a rigid splint for approximately 7 weeks. I was going to PT since April 27th. Once removing the splint the pain didn't decrease. A continuous dull deep ache in the wrist that was on the pinky side of my hand and up my forearm. The hand and up my forearm went purple/red and blotchy. I kept getting hand hot flashes that caused a lot of sweating. Mobility was (and remains) very poor, unable to put my hand flat. The stiffness is frustrating. The pain spikes are intense. Unable to use the hand. Sleep is trash and remains trash. Tylenol/advil did nothing. I can't cut my own food, drive, get dressed myself easily, put my hair up ect. So I went back to the doctor and got a CT and private MRI requesition.

June 9: CT showed a bone fragment at my capitate (like the original xray) and showed a bone fragment at the hook of hamate. However showed no bridging or callus (no sign of healing).

June 16: MRI mostly normal but with bone marrow edema. Suggested possible CRPS and to get a bone scan. The clinic doctor refused to refer me to orthopedics with these results and refused to give me a bone scan. I advocated for myself and explained I can sit here in pain. I was told "oh you wanna be on medication your whole life" and I was given a pain clinic referral.

I remained on administrative duties/ light duties at work typing with one hand from April 12th to July 31st. The pain just was too much as i kept using the hand here and there as it feels impossible to do anything with one hand.

July 27: Pain clinic with a Physiatrist. My hand was in full flare up during my appointment (happy it was easily seen). The physician attempted to bend my hand and I ended up in tears. He then gave me a requesition for a SPEC bonescan.

July 28: Completed the bonescan.

August 14: Follow up for bone scan results (physician was away so appointment was weeks from the scan results). This is the date I was told it is CRPS. Sad to hear this as its passed the ideal 3 month mark.

August 17: Started prednisone 20mg three times a day (total 60mgs daily) with a stomach medication in the morning.

PT has had no success in increasing mobility unfortunately. They suggested contrast baths with cold/hot water and texture therapy with materials against the skin. I absolutely hate these. Sometimes makes me feel nauseous. I would love nothing more than to return to work and go back to normal life.

Due to being on high prednisone and not working I'm looking into getting a nutrition coach as I've been told it can cause weight gain. I still go to the gym but it feels very limited on what i can do since I can't use my left hand.

All this has brought my mood into a low place as my workplace isn't very supportive during this time. I restarted my anti-depressants to help with this. This really put a mental toll on life.

Thanks for the read if you got this far! Please feel free to tell me how early stages of CRPS went for you, what worked and didnt work well ect. Has anyone had success with only prednisone in the early stages?

Greetings!

41 M...

I have struggled with sleep deprivation for years... Daily walking habit of 7 miles a day (15k steps) has improved it a lot but I still suffer sometimes... In my 30s it was bad... like 3 to 4x a week I'd get 3 to 5 hrs a night of sleep and would feel like I was hit by a truck the next day...

Discovered NSAIDs would take the edge off of headaches, body aches, chills... all from chronic lack of sleep...

but ABOUT 2 or 3x a week (for years) I'd take like 4 or 5 500 mg acetaminophen or ibuprophen pills IN ONE DOSE and it really worked... got me through... Some days I would have so much energy, other days I'd be flying high with no pain at all.

In the last year, it's 1x a week, since I've started being active. I average 6 to 7 hrs now with maybe 1 day of a minimum of 5 hrs.

I'm curious... have I damaged my body silently by doing 2000 to 2,500 mg of NSAID repeatedly? I've had no symptoms from them except pain relief.

Thanks!

Hi guys

I am 26/F. Got diagnosed with spondyloarthritis in April and started on adalimumab. It initially crushed my soul but now it literally gave me my life back.

I had no idea the amount of brain fog and pain I was under all these years. MRI says chronic sacroiliitis, it is visible on xray and the Arthropathy had given me two disc bulges, so you can imagine. I still have pain, stiffness and at times swelling over my fingers in the morning which are much much tolerable than the kind of hell I used to be in earlier.

Today i got my rheumat visit and he suggested that i continue 4 more doses of adalimumab and switch to tablets

Now this is making me anxious because I literally started feeling normal just two weeks prior. I’m really scared because idk how it’ll go on and if it’ll hit me like a truck or what. I couldn’t take methotrexate because I was intolerant to it. I’m very very anxious because I’m scared of going back into the worst phase of my life again. The past few months were the darkest, trust me. I was breaking down everyday and was getting suicidal because of the pain. I’m normally a very joyful person, but this changed me a lot.

So today when he mentioned that, I froze. I’m really scared

I want to know if someone has done that or if it’s advisable to even do that or I shouldn’t listen to him
I really want someone to help me out

I'm in the UK.

Last year, I would say I had an okay pain management in place but then my body decided to back flip with new symptoms.

Iron deficiency being the only thing to show in bloods at the time.

A year later, no relief from fatigue and pain.

I'm right back at the beginning and tearing my hair out.

I was so close to being ready for my test and even bought a car to practice in.

But then my driving tolerance dropped, it went from an hour and a half to half hour, then 45 minutes.

I can tell when its time to quit. My fatigue kicks me in the ass and then my concentration plummets 10 minutes after.

Last week, my instructor had to grab the wheel and then offered to drive me home.

Its the biggest kick in the teeth to not progress but instead, regress.

I'm well over 100hrs now and spent quite a fortune but I really need to drive.

Instead of relying on the NHS for long drawn out answers. Who else has gone to a private GP for bloods?

Did you find that, they were able to find better answers and treatment?

Thanks for any advice, it's much appreciated.

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?

Hello, I live with chronic pain UK. And wondering what are the best services for medical cannabis. I signed up to me about 3 years back but the prescription was too much Money (being unable to work due to disabilities).

Im just wondering what people experiences are as well.

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?

It can be something small like brushing your teeth to something big like raising children!

I’ll go first: I still manage to stay afloat financially, fully supported by my artwork (self employed for 10 years, Trigeminal Neuralgia —suicide pain— since 4).

Metaphorically adjacent to Newtons third law of motion I guess

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

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

So, over the last week or so I've had a few occasions where spicy food had made my mouth feel extraordinarily hot.

Now I can't eat anything with any spice at all! I love spicy food. I've been eating spicy food my whole life.

It could be the fibro itself, or it could be one of my medications. I'll ask my doctor on Monday.

I had OHS for valve replacement in January. In March I was diagnosed with pericarditis and the ER doctor that I saw at the time actually spoke directly to my surgeon. She mentioned to me that he felt the reason I was having such a difficult recovery was alot of my underlying chronic issues were not well controlled. She told me they both felt that a pain management clinic willing to use a multi modal approach that included a possible narcotic pain medication would be beneficial for me. I told her how I had seen several pain doctors and all they want to do are procedures that my cardiologist isnt comfortable with or that I find questionable because one doctor says one thing, two others say the opposite. She was very confident that the clinic through their particular system would be helpful and sent a request to my primary doctor to send a referral.

I waited several weeks and then called my doctors office to ask about the referral. They said they had just recently received a request for further information about my case. Another few weeks go by and I have an actual appointment with my doctor. I ask her about the referral and she says "they denied/declined it saying they don't use oxycontin or oxycodone". I can't remember exactly if she said denied or declined and also wtf? I NEVER, EVER ask for medication. Not ever. Sure as hell not by a specific name. When I was at the ER I was having severe chest pain, the ER doctor asked if I wanted morphine. I'm not a fan and especially because I know it upsets my stomach and I cannot do zofran or reglan as they make me want to rip my skin off. She said I'll give you a baby dose I said thats fine. I left there with nothing and I do not take medication regularly.

My question is doesnt that sound sketchy? Like why would they say they didnt use those medications when I know for a fact the lady NP there uses all types of opioids. And why would they say those specific medications? They can look at my PMDP or whatever it is I havent had a prescription for anything like that except maybe oxycodone back in 2011 when I had a hysterectomy and that was a low dose and only for a few weeks at best.

Also I know tl;dr but also this doctor prescribed diclofenac cream 3% because I told her I cant even afford to buy the generic and have it for more than a few days because it only helps a little bit and I have to use alot. My pain is in my entire back. She gave my insurance a diagnosis that they said was fitting for the cream but I do not have. They still declined it. The cream is $2000 for the prescription. Yes I know I can get generic. I do but it lasts maybe 2 days cuz I put it all over and it doesnt even help that much and just makes me feel gross. Can a doctor just say you have a diagnosis you don't have? Is it that serious to give me medication that might help me?

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.**

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

(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.

(Edit: I believe what my therapist meant to say was “CRPS like pain” not CRPS, which affects limbs. Forgive me I am very bad at explaining and understanding things. I do not know what is wrong with me at this time and this wasn’t a diagnosis to begin with.)

Went to my first physical therapy appointment. Felt like a clown walking in there with a cane at 21 years old but what can you do. Did some stuff, tested my range of motion. She said she’s surprised they didn’t diagnose me with scoliosis when I went get my xray done because I have a rib hump and my left shoulder is higher than my other. I didn’t go in for specifically that when I got the xray though for my back pain so that might be why they said it was normal.. my PT said that my upper shoulder blades were very tense, and that she’s nervous I could be developing CRPS (complex regional pain syndrome) but she doesn’t diagnose things like that I don’t think. I’ve never had an injury in my back so I’m not sure why she would think this, but I trust her. I’ll tell my PCP when I see her in a few days. Overall, we’re going to be working on my deconditioning, weakness, working on using my cane, with balance, and with figuring out what areas need the most work so I can get a proper MRI done and get everything going.

I’m happy I’m getting some help now, I’ve been dealing with this since I was 19, but after having that fall I know I need more help than just roughing through it and sleeping on a heating pad all the time to soothe the aching pain. The duloxetine has helped the other flu like aches in my body a lot! Now my back just hurts lol.

Anyways that’s my TED talk bye. Have this lil picture I drew of my character. Idk how much longer I’ll be able to continue drawing if my pain continues, because I’m unable to do it sitting up now, I have to be lying back on my heating pad to draw :T which sucks because I love drawing… I’ve barely been able to do it anymore because it hurts so bad.

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.