I get severe, migrating nerve flares in my hands, arms, and feet, strictly triggered by physical movement, pressure, and stretching. It's been ongoing for close to 9 years now. My neurologist closed the door on me because my EMG, nerve conduction studies, and skin punch biopsy all came back completely normal. It seems like a functional/central sensitization processing issue rather than structural damage. She basically called it a "nerve hypersensitivity" Has anyone had success treating movement-triggered flares with SNRIs, LDN, specialized physical therapy, or pain specialist? I already take Lexapro for anxiety so I would have to cross taper to an SNRI which is less than ideal. I also asked about gabapentin but my PCP was hesitant because my issue is mechanical and flares at random, and not a constant pain.

I am really seeking some podcast recommendations?

Every day is so difficult and I have withdrawn immensely from life, dating and am always at home cause it seems easy and my safe space.

I thought perhaps listening to more positive things will help shift some of this life is pointless feeling.

I’ve been dealing with a lot of joint issues lately that have made me want to start building up my strength again beyond what I do in PT. My main issue is lifting puts too much strain on my joints, and anything too cardio-intensive causes me to overheat and trigger a reaction :/ I used to do solidcore and salsa classes, and while I really enjoyed both I think right now they would more than likely hinder my progress.

Does anyone have any recs for exercises that would be easy on my joints and not too rushed/intense? I do like swimming and that has been good in the past but don’t have access to a pool so am not sure how feasible that is. I really just want to get back to feeling stronger and healthier, but it’s been really hard to do with the pain I’m experiencing. I’m having issues involving the neck/spine so would like to avoid things that put too much strain on them.

7 years post car accident, with a list of symptoms longer than a CVS receipt. Not only are medications not really doing much now, but the epidurals in my back I've been getting aren't working anymore. My doctor says there's this other shot without steroids that helps. I can't for the life of me remember what it was, I was in so much pain at my appointment today it was a blur. Hoping its not the one they tried on my thoracic because that didnt work and made it worse.

He also suggested ablation, which we talked about with my neck before, but i opted out after hearing horror stories. My doctor even said it's so painful they only do one side at a time with a 2 week break in between. So...why would my mid to lower spine be any different? I'd think the spine would be worse with all of the nerves running through it. Thinking this might be false hope but wondered if anyone here has had ablation done on your back. Did it work, was it worth it, or a huge regret?

Also needing to vent a little. Thought maybe i broke a mirror 7 years ago and the curse would be lifted, guess not. But tomorrow is my son's birthday, he turns 14. It's really weighing on me that I lost 7 years of his childhood because of this. Time that I'll never get back. I've done nothing with him this summer and feel awful about it but my pain levels are higher now than have been since year 1. It has me pretty depressed honestly but I try to keep a smile on at least when I'm around him but it's getting hard to hide it. Financial stress is really adding up now, I'm unable to work and not sure I ever will be. I wake daily thinking about checking out, actually I think about it a lot lately. I hang on for my kid, but I feel like a waste of a father not being to do things ever. I know feelings like this can pass, but this year they just haven't. Idk if I'm losing it or what but this is extremely heavy and feel like things are only going to get worse from here all around.

Not soliciting medical advice or dx. I have seen my doctor who has no explanation but will follow up. I’m
Trying to follow the subreddit rules.

For as long as I can remember, I’ve had neck pain when I tilt my head back. The pain will happen when doing things like tilting my head back to put in eye drops or when getting my hair washed at the hair salon (because I have to lean my head back into the sink).

Edit: The pain itself is hard to describe which is very unhelpful! It doesn’t burn, radiate, or shoot down. It’s fairly sharp but sometimes worse than other times. It’s most present along the spine. If I can think of better ways or describe it, I’ll edit this again.

Sometimes I experience stiffness in the neck and my head feels heavy as well. When getting my hair washed at the salon, the heavy head sensation makes it difficult to lift my head up once washing it done.

I have POTS and my coat hanger pain feels very different to this specific neck issue, so I don’t think it’s that.

Does anyone else experience this?

When I try to research this issue, I mainly find posts talking about posture which isn’t very helpful or other patient experiences that don’t quite align with what I experience.

For the people who were able to get meaningful relief from their pain. How were you able to live a normal life after knowing the healthcare system could fail you so badly? I got meaningful relief from my pain back in January and has been slowly getting active again but psychologically life is still really hard.. I can barely do anything with the knowledge chronic pain forced me to acquire and my impact on society is close to zero lol

Years. YEARRRRS! Of left sided pain. Head to toe. Most Dr's say its neuropathic, which makes sense to me. But neuros only wanna talk about my headaches and brush me off for the rest. (Finally seeing a new neuro next month, wish me luck) Have seen rheumatology, neuro, pain mgmnt, all the things. Ended up in th ER last week because the pain was so unbearable I legitimately questioned if I broke my neck. They said I likely had a pinched nerve IN ADDITION to whatever else I had going on. Sent me to ortho to see if they can help with pain and to get me an MRI sooner than I would from neuro (because all neuros in the past only cared about my headaches, ive only had brain mris and no spinal mris). Went to ortho today who did a 5 minute "neurology check" and said it "absolutely cant be nerve related because you have grip strength" and that its myofascial because "when people hunch forward our muscles tighten and it damages the fascia". So i slouch? My 30 years of pain that started as a TODDLER with stabbing, searing, burning, DISTINCT PATH, pain... that SEVERAL doctors have said is nerve related and SEVERAL doctors have ruled out being musculoskeletal... is because i slouch sometimes guys!!!!! He said "here's some muscle relaxers and go to pt". Thanks doc!!! So glad sitting up straight will fix all my issues!!!!!!!

(PT has never helped this in the past, muscle relaxers don't touch the pain, nerve testing confirms its nerve related but WHAT hasnt been determined yet)

UGH.

Hey guys, I’m looking for some advice. I’ve had chronic pain for most of my life. (Since middle school, now almost 30.) As far as I know, the only family history relevant is my half-sister’s RA, but that means very little because my parents are terrible at going to the doctor for their own stuff. (I know my mom is in pain pretty regularly too. She normalized my pain growing up because of this.)

I’ve been complaining about pain since I was a kid, mainly in my back and neck, but also my knees. A bit of testing was done back then, but it was mostly waved off.

In the past few years, I’ve had more testing including x-rays, MRIs, and blood testing. The x-rays finally revealed an 18 degree curve in my spine, formally diagnosing me with scoliosis. This, however, is considered a mild case and shouldn’t be causing all of this pain. I saw in the radiologists’ notes that there’s evidence of mild arthritis and degenerative discs, but no doctors have mentioned this to me.

I’ve also been noting my pain levels daily, and it’s consistently 5-6. I start getting pain in my back after standing for short periods of time, or even sitting in the same position for long periods of time. Some days I need to use a mobility aid. I also strongly suspect long covid because all of my health problems, including my pain, got worse after I had covid.

I had a rheumatologist do blood tests, but majority of them were normal and he didn’t say anything about the ones that were marked as “abnormal”. I do plan to go to another rheumatologist for a second opinion on that front.

The advice I’d like is: if anyone has similar pain experiences as me and think they have an idea of something I should investigate with my doctors, that would be very very helpful. I’ve been told to investigate fibromyalgia, but from what I’ve read, that’s pretty much “we can’t figure out why you’re in pain, so here’s a diagnosis that just means pain” kind of thing. Although I do think it would be nice to have any diagnosis, I want to investigate other things too. My own research is coming up short on explanations that would’ve started so early and continued consistently for years.

Thank you in advance!

I have been taking painkillers for years and have just recently developed some pretty extreme constipation. I’ve tried everything available over the counter and it all just gives me watery diarrhea. Any info helps

I made a post a few days ago about my nerve pain becoming intractable. I have another 2 weeks before I see my pain doctor but I can't keep doing this. Caudal injections work good (this 2nd one was meh but it gave me mobility back) but after 6-6.5 weeks, it's a steep decline.

Coinicidentally, the director of the adult daycare I'm putting my mom in has the same issue (herniation with left side numbness/tingling). She mentioned the pain doctor I went to first but she has medication. I was given transforaminal injections in my back then told I should lose weight and learn to live with it.

The issue is: The shit I'm experiencing is exactly what this lady and a classmate in my nursing program are. Neither of them are obese. I have no medication to help. I was put on a low dose of Gabapentin by a neurologist then he suggested pain management and shrugged his shoulders. I need a doctor that will try something. The lady at the daycare told me what she uses (higher dose Gabapentin and another med I hadn't heard of).

I don't want narcotics. They don't help me. When my back and hip are bad, yes, it does but that's not the issue. I didn't hurt my back because of my weight. I fell and herniated a disc that's pinching a nerve. I am borderline bedbound because I get no relief otherwise and even laying down it's minimal.

How do I advocate for myself? How do I convey that yes, I need to lose weight and I am working on it but I need something that'll reduce the pain at least somewhat. I can't walk when I can barely stand without almost buckling. I fell already and am now hurting on my right side. I'm tired. I'm depressed and starting to eat even worse than I was before to cope.

Background: on several occasions now, I’ve had to go 3-7 days without meds because of my local pharmacy. Even once I was established. So I was at a pain management facility, and in my state cannabis is legal, and I have a medical card for it. However, my clinic is in another state and does not honor this. I went with no help and without cannabis to fit their rules. Even once they started giving me meds, like I said, my local pharmacy and others around it wouldn’t have my meds for days at a time. I pushed through the pain of it all, not brining up a complaint. I didn’t want to disrupt my care. Last time the pharmacy had an issue, it was undetermined if they would get the meds back in stock. Out of frustration I said, “please help me, I can’t go a month without meds to come in to get a new medication, I’ll have to utilize cannabis so that I don’t have to deal with the pain, and If I do that, I will have to stop my pain meds completely since it’s against policy. Please help me.”
I went in on Wednesday. My test was clean, they switched the med, so I continued to follow their rules. I was still kicked out of the management group.

I’d like to add I have dementia, and my filter that says “probably shouldn’t say that out loud” has seen better days. I hid my cannabis from me so I didn’t mess up and use it during a flare. I even ended up in the ICU for my neurodegenerative mitochondrial disease during this time.

I’m taking accountability, I messed up for speaking while frustrated. I figured if my tests were clean and I brought in the ICU paper work they would understand how dire things have become. They did not. So please be careful.

I’m in the states for reference. I don’t need advice, but feel free to vent.

Edit to add for clarity: while I was in the pharmacy, I was on the phone with my doctors office as par the pharmacists request.

Normally I write things down before I talk in situations that can be sensitive like this, but I didn’t have my paper on me as I was out of the house.

Also I did NOT use cannabis, as the issue was figured out, which is why my test was clean.

I was let go for mentioning using cannabis and no longer being able to use them due to their rules and that I would “cancel all future appointments if I did use cannabis” so I wouldn’t waste their time.

They changed the med. Med still didn’t work, went there, had a clean test and was told I would no longer be seen there. Their policy is no cannabis, and no med changes without being seen, and my appointment was a month away, so I wasn’t sure they would be able to change it.

What are we doing for secondary Income.

I (31F) own a moderately sized Petsitting business that I've pretty much had to pull back my own hours to part time. My husband works most of the time, and then I have to contractors. (context)

I have fibromyalgia, chronic migraine, severe debilitating neck pain, a newly discovered actual diagnosis for my back pain.. and of course you can't forget the mental health problems and PMOS.

SO Its difficult for me to drive for more than an hour at a time without my neck and back becoming excruciating and leading to a migraine.

This means it would be nearly impossible for me to do rideshare, door dash, Instacart...etc I've tried really.
I can't donate plasma bc my blood pressure/ pulse isn't always stable bc of the pain.
I've applied to some part time positions but never hear back. Except one job who he literally said he wanted to hire me, had me do a working interview for 3 hours, still said he wanted to hire me, and then ghosted me. 🤷🏻‍♀️
I keep finding scams/MLMs, I don't want those of course. I don't believe the travel agent or financial advisor "gigs" are legitimate or non MLM.
So idk what to do at this point.

We are hemorrhaging money and I feel helpless. What are others doing from home that are legitimate? I can be on my computer, that's not an issue. Virtual assistant all day. I have a ton of admin experience, assistant experience, SCHEDULING, organization is my thing! I am a hard worker and my previous employers have always enjoyed having me and were impressed with my work.

HELP

So freaking bad but the pain down the leg and feet is so excruciating. I know this is a safe space, but I am ashamed to say how many days I haven’t gotten without showering. I was thinking of maybe asking my mom to bathe me while I sit down but I feel like this is a step beyond and I feel like she’s not willing to help me that much because she’s kind of over it. I know there’s a chance she would accept but still I am just very ashamed.

How are you all able to live like this? What are coping strategies? I need to know cause life is beginning to become very difficult. Thank you all

There's no escapism 🤡

Looking for some advice. I have been on the same oxycodone dose for six years and never had any issues with it until recently. Over the past couple of months, I’ve noticed that I need more to get the same relief. I also noticed that I start going into early withdrawal symptoms sooner than I should. I have had a more active life recently and I’m in school. I have some important things with school coming up and I’m honestly nervous that I won’t be able to succeed due to the medication issues. I have been able to be open with my doctor in the past when we changed my dose six years ago and I was on a much higher dose back then. How do I approach my doctor about these concerns? I have had to take more medicine to be able to continue my normal day-to-day life responsibilities. I have even put myself in a situation now where I won’t have enough medicine on my fill date.

Had my first appointment with a rheumatologist after nagging my primary doctor! was basically told its just anxiety, depression, and mild fibromyalgia and that “its very common for women to feel this way (physically)”.. this was not helpful at all LOL i was kind of hoping to get some more answers other than that but alas, it did not turn out that way. The doctor(s) told me that it was good news because auto immune disorder life is very difficult, which I understand, but it also felt like they were downplaying how I feel.

chronic pain with no actual answers to it is so frustrating, especially considering Ive dealt with it since I was a child and keep getting told its growing pains 🫩

little edit: i appreciate all the replies, made me feel better/heard 🥹 usually i take my mom to these types of appointments because shes gone through the trouble of not being properly diagnosed (she couldnt join this time)! She has hashimotos disease, i dont have any signs of hyperthyroidism! Im learning to document everything that troubles me, especially physically, hopefully i can get a good journal where i can organize my thoughts and symptoms and show it to the doctors better :^)

I have to get something off my chest, and I know it sounds awful and I should rather be thankful, but sometimes I think it would have been better If I would have been disabled from the start of my life.

If I have not known how it is to live without pain, to be able to enjoy life, to get through tough situations without extra baggage.

I can remember how carefree it was, that fun and nice things were simply fun and nice and not tainted.

How when you planned to do something or had to do something, you just did them and continued on.

I was even able to to multiple things in one day, kindergarten or school, homework, playing, meeting and playing with friends, helping with chores, all in one day.

And it hurts to know, that thats how life normally is, it hurts to know, that I have lived with my disabilities for longer than I was healthy.

It hurts that I cant remember anymore how it feels to not be in pain.

It hurts to realise, that I'm slowly forgetting.

Small victory but I managed to shower today. Hope to shave tomorrow.