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Basically the title says it. I have SMA type 2, dislocated hips, old broken bones that never healed correctly, 90 degree curve in my back etc. I’m trying to get a virtual with my pain management specialist to see if he will up my meds but I don’t know how to go about asking them to up them. Any advice is appreciated!

For those of use who are post- pain management because our pain is too unmanageable for pain management, did you start dealing with higher than ever blood pressure after they took your meds away from you? What did your normal doctors do to treat it? My partner is also post- pain management and has really high blood pressure, but refuses to see a doctor about it. I really don't want to have to see a cardiologist now that pain management failed me.

FYSA- My Dr. informed me today about the State of Washington’s increase of the MME for Hydromorphone. It shot me way over the MME, so my Dr. will be addressing that with me soon.

I wanted to inform anyone taking it, hopefully very few will be negatively affected by it (and no I won’t buy ocean-front property in Arizona 😀).

I have learned lupus runs in family, and I've been dealing with Healthcare for 3 years now where they ignore everything and I've only gotten worse since then buuuttt

I don't want to be chubby anymore and I don't want to get on meds and then gain more weight from them. So if I lose now and them gain from the meds at least it won't be above what I am now.

I have occipital neuralgia, migraines, and headaches a lot. Sometimes heart rate increasing will make my neck stiffen and then the headline starts. How the actual fuck do you lose weight or do anything with a disease? Or with chronic pain?

What should I do to lose weight or move when every body part is an issue?

Has anyone else experienced this? With the past three PCPs I've tried, they were all super friendly right up until I mentioned chronic pain. And this wasn't even me asking for meds, they literally just asked me why I use a cane. Their whole demeanor changes.

They do some bloodwork and xrays, then when I go to the follow up appointment, the doctor never shows up and I never get seen. When I ask to reschedule, suddenly they tell me "we don't know how to do that", and that becomes the default answer to everything. The last clinic I went to said they don't know how to schedule an appointment, don't know how to give me a referral, and don't know how to give me my records. Because they "don't know how" to give me my medical records, I have to start all the way at square one if I go to a new doctor and do the bloodwork and xrays all over again.

This is the third provider in a row that's done this, and it seems like the only people on earth who are familiar with this treatment are other disabled people. I'm at such a loss and I'm honestly content with never seeing a doctor again as long as I live at this point, but the pain is so bad it takes up several days out of my week to manage it and I'm just fucking tired

Recently had a cervical MRI after having an injury in the military about a decade ago.

My Neurologist considers the results urgent, but there’s been a delay getting in with the neurosurgeon. My most significant pain is actually in my thoracic spine, which I have another MRI scheduled for. Hopefully it is just the problem identified by my cervical scan, but I suspect there will be significant findings when I get my scan next week.

I feel like my entire back is caving in. Anyhow, wondering if anyone else has similar findings and what their experience was?

mri cspine: Large left paramidline disc protrusion at C5/C6 results in severe spinal canal stenosis and abutment and moderate compression of the cord. 2. Large left paramidline disc extrusion at C6/C7 results in moderate spinal canal stenosis and abutment and marked compression of the left cord.. 3. Advanced left neural foraminal stenosis at C6/C7.

I'll preface this by saying that I don't think I personally have enough going on to have my situation be qualified as a disability or chronic pain, but I still would like to seek advice from people more experienced with adapting to their bodily needs.

So I "work" as an artist. At the moment, I'm a student, and honestly I haven't drawn a lot lately, but I do enjoy it and want to pursue it into the future. Over the last few years, I've gotten really into trying to learn more, and painting for hours at a time (digitally or traditionally) is very fun for me when I get into a momentum.

That being said, lately it's been getting harder to sit and work and get into that momentum, as whenever I sit, seemingly however I sit, I get sore and stiff very quickly and need to shift positions. A few months ago, I was barely able to get any work done at my desk, so I set up some boxes on the floor, and these days, I usually work down here. It has definitely helped, but it's also catching up to me now, and it's really hindering my work-life, my online social life, and my hobbies. It has gotten to a point where it impacts my grades at times, but moreso, it's just keeping me from doing the things I enjoy; it's just slowly becoming more and more exhausting.

Does anyone have tips? I'm looking most specifically for advice from people who draw, write, or type a lot, but anyone with experience here is welcome to advise. Has sitting on more/fewer/better cushions helped you? Should I look into getting a standing desk in the future? Finding better chairs? Yesterday, I was able to get a lot more work done than I have in the last few months, and it made me realize how much I've missed "getting into" something. I would really like to keep that going, if I can. Any advice is appreciated.

As a note, arthritis runs relatively rampant in my genetics, I was in a cardio-related sport in highschool, and I am medically overweight. I've only broken one bone previously, but I don't think that it's directly related. Not sure if any of those help, but they might be correlated to the symptoms to a degree.

​

TL;DR: I'm having difficulty finding positions to sit and work in, usually in regards to my knees or pelvis. I work sitting down a lot, making many of my hobbies and responsibilities painful or more difficult, so I'm seeking recommendations for equipment, stretches, life-style stuff, alternative positions, etc that have helped others.

Thanks for anything y'all can offer.

Title pretty much says it all

I had an existing chronic pain issue for nearly a decade and always followed the rules around medication.

I don’t have a great relationship with my doctor who I sort of inherited when my old doctor who I loved moved. I always meant to find a new provider but it worked and I was afraid to rock the boat at all.

Well fast forward, I currently have some new health issue that is ruining my life. Pain beyond what I thought tolerable. Doctor won’t treat my symptoms at all because there is no definitive test result with answers. This has been going on for months now. Nothing can touch this pain so I am just suffering, life completely came to a halt and all I do now is try to make it to the end of the day.

So now I have to try in the middle of all this use the little energy I have left to go find a new provider. Turned away every time so far because they are taking patients, just not chronic pain patients, they’re full up on them..

Hard not to feel discriminated against but I understand their point of view even if I don’t like it. One doctor even told me on the DL that they’re being told to reduce opioid patients and he’s been switching all of his, started lecturing me about fentanyl addicts for some reason. Despite how hard I make sure I follow the rules I still get looked at like an addict, it just sucks.

I went through years of chronic pain, I decided to get off all pain meds and get more active and healthy, I had great success!

Unfortunately, I've just had bone surgery on my arm ulna shortening and now my bone pain is chronic and sever.

I have tried baclofin, diclofenac pills and cream, tramadol, T3s and percocete, and naproxen

Unfortunately the thing that works best for me is percocete and naproxen together.

I've ran out of percocete and I'm scared to ask for more, I'm also scared of becoming dependant again.

There is immense guilt and shame for me using opioids.

I guess i just need to vent? Someone to talk to? I feel alone

Hi everyone. I'm really nervous about a new doctor I'm about to see. I've been dealing with chronic pain for 12 years (almost 13). I've seen 4 doctors so far and no one could find the reason. Maybe it's because I can't explain myself well. What should I point out with this new doctor?

I'm thinking about keeping my neurospicy nature a secret because when I mention adhd they just forward me to a psychiatrist.

At first only my knees hurt but it was bearable. Now everything hurts, I can't get out of bed, I can't workout or sit still. Painkillers doesn't work and I'm not a fan of them (I feel very sleepy when I take them) I was a very active person before this. What should I do?

Also I'm sorry for any grammatical errors I'm not native speaker and I'm on mobile.

Edit: I have pain in my knees, ankles, fingers, one elbow and wrists. Although I found a working solution for fingers and wrists rest remains unsolved.

I told them I was on the Butrans patch at home at one point because my pain management doctor had me try it for pain relief at one point. The next thing I knew an addiction physician and behavioral therapist were speaking to me to see if I needed help. Turns out they thought I was on Butrans to get off a heroin addiction or something like that! Not as a method for pain relief. Has this happened to anyone else before!? I feel insulted and embarrassed!

My mom is 75 and currently tapering off a high dose of Gabapentin due to side effects like falling, worsening of existing memory issues, daytime sleepiness, and weakness in the legs.

For a while, lowering the dose seemed to help reduce the side effects she was having, but as of the past few weeks, they seem to be getting worse again. I know Gabapentin withdrawal can be rough as hell for some people. Have any of you who’ve taken it but had to get off of it experienced the taper improving side effects, then making them worse, then better again? Also, how long did your withdrawal symptoms last? Her doctors are useless on this (and other things).

I am so anxious and in so much pain. I've (52 F) been in a relationship for over 11 years with my boyfriend (47). During that time he had some personal barriers that kept us from living together but after a few years those barriers were removed but we still didn't live together. Every time I would try to broach the subject he would get upset, so I would drop it for a while but of course it would always come up again.

When we first met, I was working full-time and my condition wasn't so bad that I wasn't in pain all the time. I lost my ability to work almost 5 years ago now. I didn't have the strength to leave the relationship even though I wasn't happy that we weren't living together and moving forward because of all the health issues I was dealing with. Things have come to a head recently and I'm realizing he'll probably never move forward, I know duh but my chronic pain and health conditions have just made everything that much harder in my life. I don't have the confidence that I used to. I rely on his help a lot when he comes over. He's said before that all of this is hard on him sometimes and we've talked about it. It makes sense, it would bother anyone sometimes but he's been really supportive for the most part. He doesn't like it when I attempt to do things that he should be doing for me, he is very protective of me if anyone else criticizes my ability to always go to functions or do certain tasks.

But I found out from a couple people that he's been telling them that he's worried about living with me because he doesn't want to have to take care of me forever. I talked to him a little bit about it and said that I would be willing to do that for him if he were to become ill or disabled, we never know what could happen, there could be an accident etc. He said that's easy for me to say because I'm not in that situation with him. He's very active and athletic. There are a lot of things he likes to do that I can't do with him anymore. I found out recently that he even talked to my mother and told her that he's worried about my health issues regarding living with me. And the past he's told me that his therapist and parents have warned him that this will be his future as well if he chooses to live with me. But then he always told me that it was okay afterwards. It's different now.

My heart is so broken, I know I have to end it but this has driven me so low to the ground. I'm having anxiety attacks for the first time in years on a daily basis. I don't even have the energy or strength to even think about dating anyone else. I just came here to talk to people that will understand. Thanks everyone I know other people have gone through this too.

I have fibromyalgia and I’m wondering if anyone knows if your fibro can be so bad you can’t walk without pain and tingly feels and muscle aches/spasms?

You're already at your worst, because you're either out of your medication or you have just a handful in reserve from taking less than you were supposed to during the month. And you have to spend the better part of one or two days (or more) driving all over town to pharmacies to see if they are in stock and can fulfill your legally prescribed prescription for a narcotic. Because even if they do answer the phone, they cannot or will not tell you if they have it in stock (fear of being robbed.)

It's the end of the month when all the pharmacies ("big box" and mom & pop) have dispensed their monthly DEA quota of narcotic medications (April 2024, metropolis pop @350K souls.)

I went in person to 8 today, with no luck. Keeping in mind, due to physical disability , I cannot walk in, stand in line, just to be told "no we don't have it." So my efforts were in the Drive-Thru alone.

What must we do as a community of sufferers? What steps must we take to be heard? I find solace in nature, and when I finally gave up and took a handful of ibuprofen (not supposed to take) and sat on my patio, this image awaited me. God bless you all.

I have very severe Fibromyalgia so I use a walker and grip bars (and a motorized wheelchair when I go out). As a result, one of my shoulders has calcified and the pain is severe. With gentle exercises, it's been getting better. I've also recently been diagnosed with (nonalcoholic) Fatty Liver Disease caused by genetically high cholesterol. I already eat a great diet, so the docs are positive it's genetic and can't be controlled by diet. I'm also too disabled to do any exercises that might help to control it. Medication is the only option for me so they put my on Lipitor. Within four days, my shoulder pain was so severe, I was crying out when I moved my arm, and I begged my doctor to let me take morphine. I never take opioids as they scare me a lot. She let me take the morphine and took me off the Lipitor. By morning, my shoulder still hurt, but was much better and there was no need for any more morphine. So now what? Have any of you had really adverse pain responses to Lipitor? Did any other med work better?

I messed up my lower back while living in my car as a teen (24 now) it was always pretty minor and didnt hurt too long but the other day i literally had to leave work early bc i couldn't stand up straight or walk w out immense pain and since then its just been a constant dull ache

I really hope pt works,, i dont want to get surgery, not that i could afford it.

Ive never been to pt before tho. The place im going to isnt fancy bc im poor but what should i expect? How do i prepare for this? Are there things i should do at home? I try to do yoga ever so often but its hard to stay consistent w adhd and other mental illness getting in the way. Any advice would be great

Anyone else been miserable and dying for a week now? Looks to be a long weekend ahead again.

Well I had another lidocaine infusion the first two worked so good, I had my life back the last two haven’t lasted more than an hour.

My back pain is back full force, my mobility is being taken away again I’m depending on my husband for most things as I just want to sit with the heat pad.

I’ve got another nerve block in my neck coming up, my insurance requires two nerve blocks before ablation. The cluneal nerve ablation in my back didn’t work. I also need an injection into my tailbone joint because there some arthritis. My tailbone doesn’t go straight up and down it sticks out at an angle and it’s a genetic condition. My dad has the same issue.

I’m over this I’m frustrated my back has been my biggest issue for three years. Pain Dr says there’s multiple layers of issues back there and suggested these lidocaine infusions. I thought I’d found the answer but it’s back to square one I guess.

Greetings:

Shortages of opioids and other medications reached record levels in the first quarter of 2024, according to the American Society of Health-System Pharmacists. Opioid litigation and cuts in DEA production quotas appear to be responsible for some drug shortages.

PNN columnist Dr. Forest Tennant shares some of his recent findings about the Epstein-Barr virus (EBV), which appears to play a role in many cases of chronic and intractable pain.

Investigators in Australia found little evidence that spinal cord stimulators help treat chronic back pain. Some patients have more pain after getting the devices.

Got TMJ? People with chronic jaw pain often have surgery to reposition or even replace their jaws. The results are often disappointing.

In a small clinical trial, patients suffering from severe spinal cord injuries improved after injections of stem cells. One patient paralyzed from the neck down is even able walk again.

Have you visited our Suggested Reading page? I recently added new books on the health effects of toxic stress and how older women can live better, age better, and get better medical treatment.

Thanks for reading and sharing.

Sincerely,

Pat Anson Founder and Editor Pain News Network

Pain News Network is a 501 (c) (3) non-profit charity. Contributions are tax deductible for U.S. taxpayers. Copyright © 2024 Pain News Network

Pain News Network · PO Box 525 · Monrovia, CA 91017 · USA

So to keep this short and sweet here’s what’s going on. I’m 28 year old male and I’ve always had mid/upper back stiffness for some years whenever I’m on my feet for some time.few months ago I did a new exercise at the gym which i immediately felt tension on my back. The next 4 weeks sucked and now at week 10 it’s somewhat better but still has stiffness daily. Upon this happening I got an xray and mri and found arthritis in my thoracic spine as well as some kyphosis and forward head syndrome. I’ve been adjusted by a chiropractor 4 times now which helps for the first couple hours for relief then slowly creeps back up. I have yet to try PT but am considering it as the chiropractor is expensive and most people consider them to be a scam. Can anyone give me there best opinion on how to treat this so I can stop feeling stiffness and some pain on a daily basis?

Had my pain dr records transferred ed to a pain clinic in Montana after it took months to get insurance then wait to get into Dr. I saw the NP 5 weeks ago finally and she ordered xrays of my full spine. I have issues throughout my full spine and had neck surgery and lumbar surgery twice. Lots of different nerve conditions and migraines. So I return this Monday and she went over the test results and xray and my history again. Then she referred me to nuero for migraines. She was about to leave and asked if I had questions. I said well yes I was hoping you could continue my medications I was on in CA. She said she could refill 2 of them. I asked about the opioid. She said well you have to sign a pain contract, do urinalysis and see me more often. I said ok. Tech came in with the pain contract which I read and signed. I was surprised that I couldn’t have thc (recreational legal here) and was a non issue in CA. I had been taking a cbd gummy that I can’t be sure I would test clean. I had disclosed that at the first appt. she said the test would take a few days at the lab and to make next available follow up to discuss urinalysis and possibility of an rx. I was on the tail end of a 7 day migraine so by the end of the appt I didn’t even remember she said next available. Made next appt for 4 weeks when receptionist asked when she wanted to see me. I was just going off how CA works. I guess I have wait to till then to get results of my urinalysis. If positive for thc what is the chance of her allowing me one more test before her kicking me out of the clinic?

I have four things wrong where it hurts. I’ve had two surgeries in the area for two different reasons.

Nothing helps and diagnostically I’m at an impasse. Those surgeries were spread out in time. The pain is worse.

I know I need to pursue more treatments for the other two reasons but it’s hard to want to even try

I always find that no matter how I've felt during the day I always feel negative at night.

I've been struggling with insomnia for a little while.

I think because I can't sleep and I'm hurting I feel alone. There's nothing that helps except I don't experience pain when asleep.

So my grandma has had her superb pubic catherdter in her for about 2 months now but her stomach pain around that area is always pretty bad and hasn't seem to gone away.

The doctors and urologist or in-home care don't really have a good answer and just keep saying she needs to get used to it. But I don't feel like that's a real solution. It's not tugging and it seems to have healed fine. Pain pills only do so much. This week has been pretty bad. It's not constipation either since she still goes poop regularly.

So just wondering if it really takes this long to get used to or if anyone else that's had one experienced something similar?

“How are you?!” “Oh I’m great good to see you!” And smiling too, next person same “great to see you! Doing ok!” “Yep doing good”. Thinking “don’t have a total breakdown in this damn lunch line. If someone ask, eye drops is the answer. In break room with food, I’m sad about this, no mad, no sad, oh shit, god I’m so damn mad, let me find a place to cry for few minutes. Check place one, people there … hell, check place two…. Why is there someone here? I’m the only person whoever goes in here, check place three, only me in this bathroom, yes, sobs.

Please anyone with advice or suggestions. Has anyone experience what I’m going thru will help.

I had my right Inguinal Hernia repair and was perfect 2 weeks post Op back to normal. I strained my inguinal canal so much during sex I have the worst stabbing burning and sharp pain in my inguinal canal where the mesh went. My leg feels numb and I struggle walking I have a limp leg.

It’s been 12 days since I had sex that caused the nerve pain. Pain Killers helps. The pain relax but keep coming back any suggestions on what I should do? My whole right waist pelvis area feels like it’s on fire and irritated. What can I do? Please help.

My surgeon told me unlikely the hernia repair failed to wait 1 month to see but I can’t walk cause of the nerve pain. Strained during sex.

i love being on the stage and acting but the chronic fatigue and pain i get after a week of 6 hour rehearsals and 2 show days is debilitating for me.

i really don’t want to stop doing something i love so much but the standing for that long is really taking my body out.

it also sucks because i’m so young and i feel like i shouldn’t be dealing with these decisions yet. :(

taking a year already from acting anyway because i’m exhausted and want to focus on school

So many people who are chronically ill feel lost, express being fedup, are looking for answers to pain, loneliness, diagnosis, etc.

I do not have answers for anyone's specific issue. However, I can offer what I believe is one way to Comfort, Heal, Recreate. Music.

I'm always being asked, "How do you get through each day?" This is MY answer. My music. Wherever I am, I have my music playing. At home, on the road, in doctor offices. It takes me to better places and motivates me to keep recreating my life everyday, even in the midst of a rare, incurable disease.

Today, I give you the gift of music in the form of a Spotify playlist I created for all of us. The link is below. If you don't have Spotify, look it up on your app store or computer. I hope you enjoy this optimistic list of uplifting instrumental music.

Stay strong 💪 Dream free ✨️

"Getting to the Other Side" https://open.spotify.com/playlist/5F9fUwdE106odLEJk4ac0k?si=7awzEjoHTRSRsq3kyDOPjA

This is a phenomenal article about the power of music and how it helps people who have serious health conditions:

https://theconversation.com/how-music-heals-us-even-when-its-sad-by-a-neuroscientist-leading-a-new-study-of-musical-therapy-214924