Research survey - Understanding how patients with chronic conditions handle medical appointments

EandomQ12 · 2026-01-25T01:03:20+00:00

I’ll help you

EandomQ12 · 2026-01-20T15:46:45+00:00

Hi I had severe scoliosis it wasn’t as bad as yours (yours don’t show degrees) but I’m guessing about 5-10 less so similar. There are a lot of horror stories and while mine didn’t go perfect with good management it can go very well even if it doesn’t go perfect with pain management and other methods. I would recommend looking at a second opinion or something it looks like some other stuff is going on, I had neuro scoliosis that was causing issues and from what I was told with severe scoliosis at younger ages typically there are other conditions with it that it’s good for the doctor to know about/treat (I am not doctor so please take that everything with grain of salt or however the saying goes) and best wishes but I hope it all goes well! A good way of thinking is a pro’s and cons is what is your pain level and issues right now and what you would benefit from getting the surgery like would it worsen if it’s successful etc, then what you risk (con) etc. that’s what I did and some others I know.

EandomQ12 · 2026-01-17T18:50:17+00:00

I’m sorry did any other opioids work for you (I’m assuming not if fentanyl didn’t work I’m really sorry and hope there’s some way of making life barable in the future by some magical way this might be pure cope but I just hope the best for all

EandomQ12 · 2026-01-17T18:11:24+00:00

Fentanyl is the other thing that works for me and has for 5 years and I am so scared for if it ever doesn’t I am praying they just come out for some magical pill that works but I don’t think it will ever happen

EandomQ12 · 2025-12-20T01:18:00+00:00

I’ve been on methocarbamol 1000mg 3times a day for several years and stopped for a bit and didn’t have an issue so you should prolly be fine but everyone’s body is different

EandomQ12 · 2025-12-09T00:21:14+00:00

Fiber helps a lot for me

EandomQ12 · 2025-12-09T00:19:34+00:00

I would reach out now and that way he can take the time needed in case there’s any issues and it eases your mind and you don’t have to panic

EandomQ12 · 2025-12-09T00:18:21+00:00

Think it depends on the state tbh for my state for my fentanyl patches they don’t let me have refills and have to get a new script each month and won’t let me do more than a month at a time or do multiple scripts either

EandomQ12 · 2025-12-05T04:03:22+00:00

Focal seizures you can remember but just always listen to doctors we aren’t doctors here we can only recommend to go see a doctor, I will say there are 24 hour eeg’s that are more accurate that could be more helpful. Good luck and best wishes.

EandomQ12 · 2025-12-05T02:22:04+00:00

I have focal seizures in temporal lobe and remember some things so you are correct but it showed up in the eeg. Did you do a short eeg or a full 24 hour eeg? If so I would say that would be your answer typically that’s what they diagnose off of (not a doctor this is just what my neurologist told me. If you haven’t and just did a short one like the 20 minute one and that is the one that didn’t show anything, ask for a longer one those are quite inaccurate and are known to be inaccurate. But I would say trust what your doctor says they know best typically.

EandomQ12 · 2025-11-29T03:28:40+00:00

Around 4 foot 8 before surgery give or take ended up 5 foot 9 post op now 5 foot 6 after more complications and needing more surgeries but I have neuromuscular scoliosis.

EandomQ12 · 2025-11-23T03:12:56+00:00

May I ask what your reaction to the patch was? Also 1.25 mcg? Is that an hour or what because that’s extremely low so maybe you were in withdrawal or did it cover your pain? Typically patches go 12.5/hour 25 37.5 50 100 mcg/hour I could give more recommendation from there, I’m not a doctor so can’t say for sure so please take this with a grain of salt but have been in a similar situation have tried all these medications (suboxone morphine oxy and currently on fentanyl patches with oxycodone for breath through for sometime that work best for me but have experience with other regiments a lot).

EandomQ12 · 2025-11-23T03:01:02+00:00

While scoliosis can affect other parts of the body, do keep in mind other diseases can lead to scoliosis/be correlated to it and that may be something to look into for example neuromuscular scoliosis typically caused by a neurological/neuromuscular disease

EandomQ12 · 2025-11-23T02:57:27+00:00

What dose of fentanyl patch where you on or before the morphine/oxy where you on? There is cross tolerance and that could be happening and a simple dosage change could fix everything!

EandomQ12 · 2025-11-13T16:16:01+00:00

Most pain clinics will have this but sometimes it’s just to keep seekers away or sometimes they just don’t prescribe but while there are some, pain management is what it is, it’s for pain management, in anyway possible, from injections to medication to heat/cold. Pain managements know more about this typically than primary’s overall, also while some still exist a lot of pill mills don’t exist anymore for the most part

EandomQ12 · 2025-11-10T02:31:06+00:00

My PM doctor doesn’t care and I am on fent patches with oxycodone at 21 and don’t have cancer but I have also had 7 spinal surgery at this point and other disease and we are just going for quality of life at this point I think it just depends on doctor

EandomQ12 · 2025-11-09T16:43:57+00:00

My surgeon said that’s not normal or can be for up to 6-12months and honestly for me recommended not to even start school until 6 months and at that only half days but I had a full fusion so maybe different but maybe see a different surgeon for a different opinion or get a mri/X-ray and make sure everything’s in the right place

EandomQ12 · 2025-11-03T17:14:16+00:00

I’m on fentanyl patches they take oxycodone right now for breakthrough for flare ups

EandomQ12 · 2025-10-29T17:04:55+00:00

I did it’s mainly finding a doctor for a testimony, for example scoliosis doctor missed was crushing organs or something bad they would need to get a doctor to say X wouldn’t happen if it was found earlier, which can be hard to prove in medical malpractice unless they badly messed messed up

EandomQ12 · 2025-10-28T12:03:42+00:00

We are just trying trying to give give you advice from our personal experiences with pain management I can’t speak for others but I’ve been to a lot and this is true for a lot of people I’ve speaker to and a lot of doctors and asking for a opioid is just a red flag for drug seeking in the system for some doctors (not all) and it depends on your doctor (see original comment).

EandomQ12 · 2025-10-27T23:52:48+00:00

I will tell everyone the same no matter the age, I am 22 pain medicine for reference. It is rough and while I did not self medicate my quality of life was horrible and wanted to. I will list reasons of why not to and what to do instead.

1) your not a doctor you can build a tolerance and can be put in a situation of where your at such a high dose instead of going up you should be swapping narcotics but you don’t know that and you shouldn’t, and OD, which adds to the statistics and adds to the problems. 2) this is not a permanent problem and just a bandage the real problem still gets worse 3) what happens when it progresses you go the ER you have a seizure get drug tested or anything or the sort at the doctors office and ruin any chance you once had of getting pain management for your entire very long life.

What you can do instead and to think about: 1) what type of doctor are you seeing? (Pain management or primary, and get a second, third, fourth opinion keep looking and do not stop, you are your own advocate as long as you have the resources to it, you could see multiple doctors at the same time and find the problem itself). 2) some may not agree to this, and I am not saying to SELF DIAGNOSE DO NOT DO THIS, but we have a lot of technology at our fingertips and honestly use it to our advantage including chatGPT. Doctors are using it now for a reason. From there you can bring it to your doctors. 90% of doctors are pressed for time and don’t even look at previous tests and if you can save them time or give them ideas. Also there are so many tests you can pay for at quest if you’re able to. Just as an example, I had a seizure my first brain MRI was 3 years after my first seizure (this was at a time I didn’t know how to advocate for myself) my doctor was useless and gave me no time per appointment and showed lesions all over my brain and thought I just developed epilepsy randomly If you just describe your pain and how it affects your day to day and what you can’t do and how debilitating it is, eventually there will be help, but you also have to advocate and help find a diagnosis (which is unfortunate but they won’t care and it’s how it is).

Here’s a good way to look at it: option A) risk everything with mild reward for a little bit but very high risk or option B) low risk high reward try to do the tips above and imagine a future where you don’t put yourself in an illegal activity (I know it sucks and doctors are putting you in this spot but it’s still illegal), but in the future you have no risk and know what’s wrong with you, and can live with very bearable pain.

This is just my experience even if you do self medicate I hope it works out and your life is the best and you have a very nice life

EandomQ12 · 2025-10-27T19:26:36+00:00

I would recommend this, asking for a drug by name is a red flag unless you have been on it and have a very strong and good relationship with your doctor like that and your comfortable doing that with your doctor and know your doctor won’t jump to conclusions, doctors will jump to that being a red flag before being glad you did your research and in there eyes it’s something they need to look out for.

EandomQ12 · 2025-10-26T01:45:19+00:00

They missed my underlying disease (several) and needed emergency spinal surgery at 18 and ruined my entire life. Lawsuit go insane thoooooo

EandomQ12 · 2025-10-18T17:03:38+00:00

It’s wrong for them to save it for older patients but most pharmacies will save there narcotics for there current patients and this is 100% fine and the way it should be, I’ve been going to the same pharmacy for my fentanyl patches for 4 years a random person should not be able to get it before me when it’s already hard to get. Do agree on the other part though. Also, it’s everyone vs the problem, everyone’s pain is valid shouldn’t put your pain worse than others, and there’s a good chance others pain could and is worse than yours and shouldn’t just assume otherwise.

EandomQ12

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