sorry for my typing im have autism and intellectual disability
so so so much pain m
hurts so bad to walk caregivers say to walk it off
nauseous ffom pain just want to sleep i just want it to stop ahy why why
Fuck this fucking life and world.
I suffer all fucking day in and out but because my illness is internal (for now I guess, extreme nerve issues in my face and neck) I get zero credit. All I get are people thinking I'm lazy and stupid and volatile. I see people getting so much more than me, so much more credit for a fraction of the suffering I experience on a day to day basis. Best part is I take the pain all day every day, so I can't work normally on other things and can't concentrate on anything so I'm outwardly extremely weak despite fighting a war within. I swear to god everyone who doesn't deal with chronic pain or illness just laughs in your face and tells you they have things just as tough, when if they had to deal with even 1% of what you face they would break down almost immediately. FUCK THIS SHIT.
Idk I just had this thought today…
I feel like everyone and everything is moving forward around me- and I’m just stagnant, stuck, left behind by my own body in life…
If I'm not being silly I'm sure you're not supposed to have codene for long term pain?
I've had awful nerve pain from chronic meralgia paresthetica for about 7 years now, told doctor that and I said I'd like to try gabapentin since the amytriptaline didn't work and I don't like taking cocodamol because it gives me constipation (currently very constipated from having to take more than usual due to working for 8 days in a row)
She perscribed me 30mg straight up codene and threw in some laxatives, said gabapentin was a last resort but I've been going to the doctors about this for so long now and it's only been put in my medical file as "mild" even though some days I feel like my leg is being burned at the stake :(
just annoyed I guess
I spent 7 hours on and off the phone yesterday getting it resolved and finally got ahold of a representative who was a guardian angel and called the pharmacy while I was on hold and had them fill it! I’m afraid I will have to do this every 2 weeks now when I’m due for a refill! 😭
Has this happened to anyone else before?! If so what did you do? My pharmacy doesn’t allow you to pay out of pocket for narcotics anymore. So that is no longer an option. I’m so scared!
I've been dealing with debilitating pain for years now I've done every procedure pain wise done and last year I underwent Hfx spinal cord stimulator surgery but pain won't go away. I'm on nerve medication lyrica 200 mg hydrocodone take max dose daily and baclofen and lastly Butrans 15 mg still I live in this hell of pain day and night. My pain specialist told me I'm a candidate for Metronics Morphine pump embedded in my spine that they will refill the medicine every 3 months? Anyone know anything about this. I'll be on pain killers for the rest of my life pain doctor made me aware of that. If I don't make any sense I'm sorry I'm currently having a flare up of pain and it's hard to write straight.
I also have multiple autoimmune disease that caused me more pain we have tried multiple cancer medications and immunosuppressant currently on humira and some immuno suppressants
Hi everyone, thank you for your time and willingness to read this. I appreciate literally
any advice at all.
24F, 115 pounds. I’ll try to make this short - months ago I started having extremely irritating wrist pain, which progressed to shoulder pain. All on my right side. My mom is a doctor and noticed that my right scapula is winging. I went to a PT. PT diagnosed me with 15 degree curve scoliosis and winging scapula and I did some exercises with him for a while. Nothing got better, only worse. I finally got imaging of my spine. Sent to spine specialist. Spine specialist did a cervical spine MRI. MRI showed “military neck” in cervical spine, mild degenerative disc disease, and at C3-C4, a “moderate right foraminal disc protrusion that causes mild to moderate right foraminal narrowing.
Minimal disc bulging is noted from C3 through C7.”
I thought this was the answer for it all, BUT THEN, when I went back to the spine specialist, he said it wasn’t bad enough to be causing the issues I’m having. He sent me to a wrist doctor who says I might have carpal tunnel, and ordered an EMG which came back completely normal today. The only other thing he did was prescribe pregabolin for nerve pain, but he filled the prescription wrong and I haven’t even been able to fill it to this day, 40 days later.
The EMG doctor is now suggesting I see a shoulder specialist but I am at my wit’s end. I have wasted hundreds of dollars and countless hours on doctors and am still at square one. I just want to give up and I don’t know what to do.
The pain is pretty bad and is exacerbated by work and movement - it feels like it radiates down my arm starting in my shoulder area but is hard to pinpoint. In certain positions my hand starts to tingle, and at night I am woken up by my entire arm being completely numb. My right arm seems to have gotten slightly weaker over the last few months. My scapula is still winging. I am unable to keep my arm held up for very long without needing to rest it.
Does anyone have ANY advice on what this could be or how I can try to mitigate the pain on my own? Even natural remedies? Kava seems to kind of help but not much. Stretches? Sleeping positions? What should I do? Thank you…
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 am proud of myself because the onions were gonna go bad soon and needed to be cut up and put in the freezer otherwise they’d be put in the trash. I have a spinal injury and struggle with standing for long periods of time (I max out at about 25ish minutes on a good day, 2 minutes on a bad day if that). I cut up the entire bag of onions and got to get it in the freezer. My neck is absolutely killing me now but I consider this a win :)
I lost my job a little over 3 years ago after I caught Covid for the first time. I started getting strange muscle pain and tightness that got progressively worse.
I went on FMLA for a while, and my employer gave me a few months of grace after FMLA ran out, but I was so insanely stiff I still couldn't even sit at my desk and eventually they had to let me go for failure to return to work. It was a really dark time for me, as none of the doctors I saw could figure out what was wrong, and I went from specialist to specialist without any answers. Some doctors even tried gaslighting me into thinking it was just depression or anxiety. Meanwhile my muscle stiffness had gotten so bad, I spent almost every day lying on the floor because I could barely bend.
After years of advocating for myself, I finally got a referral to the Froedert Medical College of Wisconsin. I had to wait almost a year after scheduling, eventually I was able to meet with the head of neurology.
Today was my second meeting with him, six months after my first, and based on my test results and symptoms, he diagnosed me with Stiff Person Syndrome.
I've been on a low dose of Valium for the last year which has been the only thing that helped with the stiffness, but now that I'm diagnosed my dosage is finally being increased, and I'm getting a referral for IVIG infusions.
I'm so happy I'm done with jumping from specialist to specialist only to hear the dreaded "all your labs look normal." It took me over 3 years, but I'm finally free!
Tl;Dr - after 3 years of being disabled and losing my job, finally got diagnosed with Stiff Person Syndrome
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).
(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.
25f—if you’ve been following my journey here’s the next part. If you want to read the last entry, you can go to my profile and find it.
I went to the ER again yesterday because of my ongoing lower back pain. They read my MRI, doctor said it was “perfect.” I could’ve cried. I know it sounds weird, but I wanted them to find something so at least they know where the pain is coming from and possibly fix it.
The ER doctor said that maybe I do have CRPS (a prior diagnosis I had that I thought we had scrapped) and that this is just part of my new pain now. Again, I just wanted to sob when she said that.
She also said she would prescribe me something stronger to help my pain, but she can’t because of my pain contract with my PCP.
Today I called my PCP’s office and told them about the ER visit and her recommendation for stronger meds (even if just for a short time) and a rheumatology appointment.
I got a call back from my provider saying to stop taking the tramadol I was prescribed from her because she’s referring me to a pain clinic. She’s also referring me to rheumatology, but that’ll be at least a year wait (ya know, insurance and all that shit.)
I honest to god don’t know what to do at this point. I’m feeling so lost. Pain clinics around here usually only do injections. And without the tramadol, I will be completely out of pain medication.
My back and legs are hurting so bad that I can’t bend/stand/walk, but sure, let’s take me off all my pain meds and just wait!
I’m sorry for being so down, but I literally have no where to turn now. This is just another thing for people to think I lie about for sympathy or meds.
I have been dealing with chronic pain in my upper back on the right side between my spine and shoulder blade for close to 10 years now. The pain is more of a dull, static, “pressing” pain that stays in one spot. A picture is attached with my pain area circled in red. I am wondering if anyone else has pain in this area and if you were able to determine what is causing it and have you had any success treating it?
I have done several MRIs of my spine and shoulder blade. The shoulder blade shows no issues. The spine shows several herniated discs in my cervical and thoracic spine - the most significant at C5/C6 and T2/T4.
I have no history of injury to the back, spine, or shoulder. I have been to several pain management doctors and each has their own theory (most believe it is pain derived from the herniated discs contacting a nerve root), but none have been able to provide successful treatment of pain relief yet.
I have tried traditional physical therapy, dry needling, cupping, spinal decompression, chiropractic treatments, trigger point injections, epidural steroid injections, PRP and stem cell injections, and none of them have had any effect in reducing my pain. The next step I am going to discuss with my doctor is some kind of nerve block called a radio frequency ablation.
This pain is truly debilitating and prevents me from doing many things that I enjoy. I am desperate to find relief and get my life back. If anyone has any similar pain history that can provide any help with treatment or at least ideas of what could be causing this pain I would greatly appreciate your input.
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 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!!!!
Finally a comfy waiting room designed by someone who didn’t study hostile architecture.