We have an official Discord server!

i haven’t felt like myself since this “flare” started in july. i was exercising regularly and strengthening my core. it was working to lessen my pain, and i did feel stronger

then i got mono for a month. i was so completely exhausted and in pain 24/7 and it’s been downhill from there. i discovered that i have an autoimmune disease. my herniated disc hurts way worse. i’m still tired all the time. my knees are fucked. the only thing that i’m consistently doing is sitting on the couch watching shows and playing on my phone

i know that cooking is going to hurt so i haven’t been doing it. cleaning is pretty much out of the question unless i take my opioids. i try to play a computer game with my husband but i get so tired and disinterested so quickly

it feels like i want to do everything but nothing. i used to be so productive, even despite the pain. i just don’t know who i am anymore outside of this

Looking for some positive examples out there to look to as a source of inspiration and hope as I navigate chronic pain. Any recommendations are welcome. Thanks!

Ive been on 900mg of gabapentin for almost 3 years now. I am losing ALOT of hair and want to come off this medication before i am completely bald. I am curious if EVERYONE experiences severe withdrawls or if there are people out there who have no issues stopping this medication. Obviously i plan to discuss a safe taper with my doctor first but i am looking for shreds of hope that maybe i will get lucky in terms of severe withdrawl issues..

Dependence on medicines, physical therapies and stretching. All day every day. It feels like it just won't get better.

Tens machines or massage just to warm up my muscles in the morning or gaining relief from the day/shitty sleep.

It feels like there's no end, especially on flare days.

Sorry mini rant ♡

I've chronic neck pain for what I think is about 2-3 years now. I've had MRIs and all that and nothing to show for it. I've done PT and didn't really see much of a difference and the exercises were things I could do at home. Finances demanded I stop.

And here we are. No better or closer than then. I try to stretch and it doesn't matter what movement or direction I move my head in, it sounds like I've got pop rocks in my spine. Literally crunching noises. I pop my neck multiple times a day, not that it helps but the urge is there. I've tried massage which helps in the moment but not after, assuming the masseuse doesn't end up hurting me more. I have a special cervical pillow which is just on the side of too soft/low of a loft so it helps if im laying flat but otherwise kills the area between my shoulder and neck.

So yeah, I pretty much am making it through sheer spite, stretching, heating pad, and magnesium foam and stuff like Penetrex, Voltaren, or arthritis cream.

Does anyone do something I haven't tried? My husband has mentioned CBD numerous times but I'm nervous about it. I heard it's uselsss without the THC. Is this true? Do creams leave noticeable traces in your blood? Im a teacher and while I haven't had a drug test yet, I can't risk it. Apologies for my ignorance on the topic.

I got switched from oral morphine to oral oxycodone liquid solution not too long ago and I just wanted to know what are the actual differences between these drugs?

I refuse to believe 0 is the normal pain level. I’m always at least a 1 and it’s crazy to me that some people don’t feel pain everyday of their lives. Like rn my ears hurt & my stomach hurts so I’d put it at a 3/10.

My best friend and sister both woke up with pain too so like… normal?? 🧍‍♀️

I am a teen with Ehlers danlos syndrome. About every month or so I get really bad shoulder pains that can happen in both shoulders. Usually it's a sharp flash of pain when I apply pressure, but sometimes it's a dull aching pain. It usually lasts a week or two, and then goes away completely. Does it still count as chronic pain?

For some context, I've been having on and off joint pain in my knees, fingers, toes, and more parts of my body. I'm only 16 so I don't know if it's just growing pain or not, but the burning feeling in my joints and the pain are a daily occurance. I got tested for Rheumatoid arthritis Monday and it came back negative so I'm good there. I don't know if it's all in my head or if I'm just crazy. One thing I do know is that it sucks because I don't know what's going on with me at all. I'm 16 for goodness sakes! I shouldn't be having this pain till I'm in my 60s and have lived my life.

I live with chronic pain from RA, spine disease, and other things- but one of my my annoying pains is 1-2 weeks a month (before period) one of my breasts is PAINFUL. It’s terrible because I get used to life without the pain, then BAM, hot searing pain.

I’ve had this since I was a teen, but it’s worse in the last year. Used to be bilateral tenderness and warmth. But in the last year one is so tender on the nipple that bra and shirt feels like paper cuts or alcohol on a wound, and breast is so tender it feels like hot pokers all the time, palpating is unbearable.

Gyno said fibrocystic changes, pcp said “normal at your age with your issues” (I’m mid 30s with autoimmune disease). No physical exam, no ultrasound or bloodwork. I’m not panicking, no breast cancer in close family, but I wonder if I should pursue this more or just accept than 1/4-1/2 of my life until periods cease to happen?

The only change is med change and controlling pcos caused periods to be regular. They used to be totally random, and now I’m having them every 4 weeks on the dot. I hate it.

Any advice?

Hey, I have some unberable tooth ache pain. I'm in the US and wont be able to see the dentist until tomorrow.

I've been taking 4000mg of tylenol per the limit on the bottle instructions. How safe is this relatively if done for about a week? I've been also taking ibuprofen 3 times a day (200mg) as well. I don't drink alcohol or take any other medications.

It seems like I'm taking quite a bit of pain killers, as they only last an hourish before the pain comes back, which I end up trying to hold out until redosing after 4 hours after the first dose.

So some "christian" decided to take it upon themselves to reach out to me unsolicited after seeing my recent post on here.

If you're religious, don't fucking do that.

She started saying some ableist nonsense about how "God can heal me", I just need prayer.

Genuinely, you are not a kind person, and keep your fucking religious bullshit to yourself. How fucking dare you; any fucking religious person, how fucking dare you message someone suffering with a disability and basically tell them "you're just not praying hard enough to be healed" fuck you and I genuinely hope you get in an accident that causes you to become disabled. I hope you know what it's like to know that you will never be "healed" and have shitty fucking religious people tell you it's your fault. I hope you know what's it likes when you realize your "god" does nothing for disability, fuck does nothing at all.

Also fun fact to Christians messaging a descendent of residential schools survivors and trying to indoctrinate them back into Christianity or catholicism; that is violence. Culturally genocidal violence. You are re-traumatizing someone who knows how violently disgusting your religion actually is.

This isn't to attack religious people who don't fucking do what this asshole did but I'm sure someone will confuse my message. Just keep your unsolicited religious thoughts to yourself. Please.

After 6 years of surgery, PT, medication, therapy, my doctor caved and gave me meloxicam. Her excuse was worry for my liver & kidneys.

6 years of pain. Meloxicam is the first medication that gave me enough relief that I could get moving in the morning quickly and nuke my stiffness into orbit.

It also makes my head feel a lot clearer and my entire body just feels way better, not sure how to explain it. Makes me wonder if I have an inflammatory disease.

Anyways, those who have taken meloxicam long term. Did you notice any of the scary side effects or did you have to adjust your lifestyle at all to remain on it long term?

I was on morphine ER and oxycodone for about 10 years. It worked great, but my pain was starting to increase. So my PM switched me to the Fentanyl patch. It's the same daily MME(105) as it was before with morphine.

I started the patch on Thanksgiving and today was my first patch change. All I can say is WHAT THE FUCK! I thought Fentanyl was supposed to be like top of the line medication. I've been in so much pain. It feels like I'm taking absolutely nothing. I do get relief from my breakthrough oxycodone but I'm only prescribed two 5mg pills a day, so it doesn't last that long.

I feel terrible. My average pain on my previous regimen was 3-4/10. Now I'm about a 6-7/10. What's going on here? This sucks!

I take Tramadol (the instant kind) in the morning and halfway throughout the day, and I end up sleeping 11–13 hours every single night. The tramadol is no longer in effect by the time I go to sleep. If I take Tramadol prior to sleeping, I end up experiencing insomnia.

I know I've posted on here before about my breakup with my ex due to my disability. But I never realised until last night how awful he's been and how much he wants to erase me from his life for being injured. Need support 😞

I (31f) dated a guy (31m) for 18 months and lived together a year. I'm in recovery from a complex surgical complication but making progress. We dated prior to the surgery but he was aware I had health issues/surgery coming up. Id made it clear on our 3/4th date. He said as he was a doctor, it didn't bother him.

My ex went from 100 to 0 in a matter of days prior to the breakup. Wed hit a rough patch as we weren't being overly careful with protection and I was concerned I'd had a very early miscarriage but we'd had agreed to work through it. We discussed kids previously and what would happen if I got pregnant etc. Everything seemed fine, he was supporting me with putting together an application for fertility treatments (I have endometriosis) and had said 5 days prior to the break up he could see me being the mother of his children if we worked out long term. I was going to be put on the lease this upcoming January. We had plans to travel together in the upcoming weeks and near future. Then after going to a wedding with his family, became withdrawn over a matter of days and ended it abruptly when I asked why he'd been so distant and didn't want sex.

He said he can't cope with my injury and it's impacting his mental health as he'd lost his late wife to cancer a few years ago. I went to stay with friends, returned a few days later as I need my adaptive equipment for work, to him shouting at me to leave, whilst I was working on a big client project I'd pushed back for the wedding and then to travel to see friends to give him space. He knew I had these deadlines and didn't care. I booked an airbnb, worried he'd change the locks etc. but that wasn't suitable to my mobility issues (and lost 2k in process due to the host saying it would be suitable) so had to return but I was only allowed to return on the agreement I did not speak about the breakup. Anytime I do he shuts me down as it's not what we agreed. I'm now looking for a permanent home to leave his, he's served me an eviction notice for the end of December.

He wants to remain friends, hang out with me whilst I'm here and when I leave, but also, has abruptly withdrawn support/care for my injury, and says I need tough love to learn to cope alone, so is also happy to leave me struggling in the flat in pain, hear me struggling, and if I was ask for help, although he will help then, he reminds me I'm not trying enough to cope alone. He encouraged me to sell my car a month prior to the breakup, but now won't pick me up if I'm stuck somewhere in pain. I've pushed through with it but i'm in a lot of pain as my body isn't used to doing this much activity (and I've been advised not too). So I'm now desperately trying to arrange a new vehicle/disability transport services etc. If he gives me leftovers from meals he's cooked, he reminds me that I need to cope alone and not to get used to it. I've bought a load of microwave meals as that's all I can manage to cook right now due to the medications I take at night making me spacey/drowsy. If I'm housebound due to pain and ask him if he's going to the shops and can grab me some items (with my card), he acts really put out as if I'm asking too much, so I'm ordering expensive Uber eats grocery shops. Hell then go to the store and buy loads of things for himself after my delivery has arrived and ask me if I want anything - knowing the delivery came 2/3 hours before.

Last night, I'm removing my client work from his iPad. I sign ndas with work and he used to help me with some editing in return for using some of my work stuff (VPN, healthcare plan etc). I didn't expect to find tabs open and a search history that I did. One week after our breakup, he was researching ways to forcibly evict me, homeless shelters, and houseshares half way across the city, where I wouldn't be able to access my physio, pharmacy or doctors. The following week, he was booking solo trips to the places we planned to go together, only now in 2 months time rather than when I am recovered (later next year they predict).

He's returning from being away with his family again tomorrow and I can't even imagine being in the same room as him. He's agreed to drive me to a medical appointment, which I feel like he's only doing to save face professionally due to working in healthcare himself, as many of my healthcare professionals have raised concerns about his behaviour.

I'm in my early 30s. As much as I understand breakups happen, people's feelings change and caregiver burn out is a real thing and can impact someone significantly. I just feel so disrespected how he was so happy to remove care and erase me from his life, even to the point of forcing me out the door of the home we shared for a year a week after he ended our relationship. The pain of how he's treated me these past few weeks is worse than the pain of losing him as my partner. I feel like I've seen the true side of him, and the entire relationship was a lie. Just needed to put this somewhere so it's not in my head. Thank you.

Most people I know who say that suffering is a choice and that you can switch off suffering with the right mindset never suffered from intense chronic pain. I'm curious to know if you had moments of intense pain where you felt free of suffering, be it through distraction or focusing on the pain or other techniques.

Am I weird for looking forward to my lumbar surgery on Monday??

I had neck surgery this past march where they went in through my back and performed decompression and a fusion of c2-c4. This time they're going in to 'scrape bone away' to widen my spinal canal.

I've had pain 24/7 for the most part of the last 2-3 years and just tired of it! It's hard to physically get out of bed every morning now, and this cold a$$ weather isn't helping any lol

A little background....
at age 52, I have cervical & lumbar stenosis, DDD, osteoarthritis, herniated discs, etc...lol

Wish me luck!

As needed (or prn) pain relief isn’t enough anymore, I need daily pain relief. I always have, but they are so strict with opioids, the best I’ve been able to do (and I’m grateful for) is every other day, but my pain is so debilitating, I need it daily. I can’t do this anymore. I’m 30, I need some quality of life.

Now, to confront my doctor with this… 😢

In the meantime, I’ve tried to go to saunas to let my muscles relax, trying ashwaganda with L-theanine, and magnesium glycinate. As well as using diclofenac, arnica, and naproxen gel. I’m also trying stretches that particularly affect my scalene, SCM, and throat flexor muscles. Nothing is helping me get better

I should also mention I have untreated anxiety, ocd, and depression which stresses me out a lot and I had TMJ surgery 8 months ago

So I've posted in this group before, just search by my user name. Long story short, we think the issue is radiating pain due to arthritis, specifically at the L4-L5 and L5-S1 level. This coming Tues will mark 1 month since I had the nerve ablation done on the left side (where my pain is) and is also the day I will have the ablation done on the right. However the left ablation has done zero for my pain so far. I'm so frustrated! They said it would take a few weeks to start to feel relief, and 6-8 to feel the full effects. But I've had no changes! They did the two block tests first, and both times they reduced the pain so how the ablation hasn't worked yet is baffling. Has anyone else experienced this??

I’ve been going to a Pain Clinic since about 2016 for back pain from a busted lower vertebra and lousy surgery; I have so much titanuim that I can’t even get a routine MRI. I’ve been prescribed and taking Hydrocodone (Vicodin) 10mg x 90 per month. Obviously, after this long, the hydrocodone is not working that well, so when I.last saw my doctor, I asked him about diliidid, because I had taken it quite a while back and it worked well. Well, at least he didn’t freak, but told me not many pharmacies stocked it, so he prescribed Xtampza ER 13.5 mg. I picked. It up last Monday and had read all about how to take it, and took it as directed, Not a thing happened. Not a thing. I took it (Xtampza) back last Wednesday and asked them if plain old hydrocodone could be prescribed, but I have to have an appt; they told me I had one this coming week, but I looked at my appt card when I got home, and found it’s not until the 19th ! I’ll be prectically dead by then; I’m out of Vicodin and this back pain is killing me. So I guess I’ll go up there Monday, as of course they were closed Friday. But one of my big problems is that I have a very high tolerance for drugs. I’m just wondering how should I approach the doctor, I think he trusts me, but I don’t know how wise it would be to tell a doctor I have a high tolerance for drugs. But the hydrocodone is out, it’ll work as a prophylactic for now and get me by, barely, but I need something that will work. Is it possible the Xtampza was such a low dosage that it just didn’t affect me ? Similar thing happened to me several years ago when I had heavy duty dental work, and the dentist prescribed Percocet. I got it filled and went home and took one and like, nothing happened. I took another, still nothing. I wound up taking them back to the pharmacy and the dentist prescribed Vicodin. So, I’m at a loss to understand things. Hydrocodone is out as I’ve taken it so long, and oxy drugs aren’t seeming to affect me that much. I don’t know if I should try for the diliidid, or see if I can get something like Gabapentine or Roxicodone. Not asking for advise here, just asking if anyone’s had a similar situation

A comment I left on a post about feeling guilty about the 'good days'.

Too many things happened in appointment so I will just put the first 2 minutes after sitting down. Will probably post the other stuff later.

Here we go;

Doctor; “Gabapentin will help your nerve pain much more than Opioids do. In fact Gabapentin and other such ones will always help more with pain, whether nerve, muscles or whatever else than any opioid will help. I am telling you. Which is why we have been told to drop and even try to stop morphine and such being given as it doesn’t help chronic pain. It will only make you an addict. Do you want to be an addict?”

What???? What??
No. Morphine helps with pain. Who researched this and said “Yep, Morphine and such doesn’t help people in pain, at all, all it does is make them addicts.”

They really couldn’t give a shit.

I said to her “the ones who say this are they themselves in pain? Maybe they should ask people who are actually in chronic pain what helps them. I imagine a few will say that Morphine does even if it’s a little bit. Also that Gabapentin does help or doesn’t help at all, no in between so to speak.”

UK is getting worse.

So question; Gabapentin or Morphine/Opioids What helps or helped you more with your pain?

This was therapy to make.

Has anyone else developed arthritis or deformities in their fingers from constantly trying to release trigger points with your hands? I was diagnosed with myofacial pain syndrome over 3 years ago, but in the last year or so I’ve noticed my hands have become more and more painful and have begun to look kind of crooked with the joints looking a bit knobby. I don’t know if this is just joint inflammation or if I’m developing arthritis but I know it must be from constantly massaging and releasing my trigger points with my hands. I have many tools that I try to use instead of relying on my hands but some trigger points just don’t release without the dexterity of my fingers, particularly for the trigger points in my neck. I would love to hear if anyone else has had issues with this? And if so what did you do about it? I’m worried because I’m young to be developing arthritis already and I don’t know how I’ll manage the muscle pain in the future without the use of my hands…

Hey all as title says I have tried everything and no matter what happens after 10 minutes standing my back goes numb with pain and my legs start to shake if I push it for longer. I had doctors when I lived in one state but due to going homeless over this i had no choice to move into friends house and now I no longer have health insurance my doctor told me it's only going get worse. And because of this I have gotten depressed and have aneixty when I seen my physiatrist they diagnosed me with extreme depression anxiety my doctor said I have crooked spine. And now since I have no insurance I am at a loss as I have no experience with sit down jobs so every job I applied to turned me down and I physically can't do a standing up job. I been advised I should apply for disbility but no I won't get it now that I have no doctors to turn to. What can you guys reccomend for over the counter stuff I tried most of it and does nothing at all. Thanks have a good night.

Been to several doctors over the years but kept getting told I'm fine and they don't pursue anything else besides one doctor who said I had high BP then I proceeded to check it at one of the booths at the pharmacy was completely normal. Went from pains to numbness to tingling and now I'm having muscles spasms in my right arm and usually daily headaches. Keep having to work through it. How do I get a doctor to actually take me serious? Cause honestly running out of hope and tired of simply suffering with no idea why.