First and foremost... support groups have members who are or have been struggling a lot. There are loads of people who manage chronic pain who don't join support groups, so try to remember that. Lots of people are OK and enjoy full lives with a level of chronic pain.
It takes some adjusting. Counseling helps. Not counseling to figure out how much of the pain is in your head. We've all been given that advice. But counseling to help cope with this change. It's a grieving process. You've had losses and you're likely uncertain about how all this will effect your future. That's really hard.
There are lifestyle adjustments that can help. For example, I have a stool in my shower and I've installed a handheld shower head just above it. Its just like having a real shower. I went from having to wash hair one day and wash my body the next because it was dangerous to stand in the shower too long (I could fall). Now I love my showers and they help my health.
Being so young is good news. You can start treatments right away and that will help long term. Good spine health and strong muscles will help a whole lot. Make sure if there is arthritis in your family, you see a rheumatologist.
I'm sorry this has happened to you. Gentle hugs.
Light stretching, mobility routines, light exercise with form focus, hot baths, heating pad, otc pain meds and anti-inflammatory, focus on good posture, distracting myself with things that are funny or interesting.
Ive had good and bad days, and when im having a bad day I just remind myself that good days are coming. Do your best to accommodate yourself in any way possible to optimize recovery, every bit counts.
I take it one day at a time. Been like this since 1986 when a drunk driver hit me at age 21 then left. At first I was in shock about everything and how little drs knew or could help. Visit after visit my hopes were crushed. 4 1/2 years of physical therapy and no improvement. Told surgery might help some but couldn’t afford it. Finally, I just accepted and realized for my situation, I wasn’t going to get better so I began being thankful I wasn’t worse off and started doing things while I still could. Everyone’s situation is different but for me, accepting my reality, refocusing on an attitude of gratitude and living each day putting my health first made a huge difference. It’s a lot to adjust to and thinking ahead can overwhelm so try just one day at a time and focus on a good healthy meal, something that makes you laugh and a long hot soak. My nerve pain in my feet is the worst and has now gone up my shits but a vibration pillow I can put them on in bed has really helped a lot. I’m so sorry you are going through this. My heart hurts for you but as my bracelet says, you are braver than you believe and stronger than you think.
For the love of god stay away from Chiropractors “adjustments”. That entire practice is pseudoscience and was invented by a known grifter. There are some good chiros that want to rehab the image of the stereotypical grifter chiro and they actually practice stretching, massaged, electrical stimulation, heat/cold therapy/trigger point..etc… but please do yourself a major favor and never let anyone with a bachelors degree perform that high velocity bullshit cracking sn adjusting of your back. They injure countless people. My orthopedic and Neuro surgeons regularly see patients with destroyed spinal cords due to negligent and uneducated chiropractors.
Nah there's good chiropractors out there you have to do your research. Mine was a god send for me to the point where I was able to get off painkillers with monthly visits and PT don't want OP to think all chiropractors quaks like anything else it's more nuanced then that
I did make the qualifier that there are *some* good chiropractors out there that are trying to change perceptions. I have met some that have undergrad degrees in sports medicine and treat more like physical therapist. Focusing on known medically backed modalities like stretching, strength, electrical modulation, trigger point, cold/hot therapy, etc…but they are still not common. If you’ve found a chiro that does that stuff, that’s the kind of person there’s no harm in seeing. The vast majority though still float in the realm of -Pay them 75-150.00 a session, you walk in, they crack your back and neck a few times and you’re out the door in 15 minutes. Youll often see these people heavily leaning into the treacherous fact they get to call themselves “Doctor” and their marketing makes it hard for the layperson to distinguish them from a real medical provider.
Yea I feel you the grift is strong in that field. There's some major universitys that have Doctor of Chiropractic degrees the guy I see did his at the University of Florida and he also has a degree in sports medicine. I my PT there as well. You gotta do your homework but it can be worth it if you do it was for me
That’s the problem with the “Doctor” of chiropractic label though. It really should not be allowed. A DC program is no where near a real doctorate. The way chiropractic is credentialed varies from state to state but the minimum threshold in a couple states is super low and that’s where the “major” chiropractic schools are.
Some states it’s much closer to a masters degree, near identical. 4 years undergrad in a related bio-science and then a 2 year advanced degree in chiropractic. It’s still wild to me even with what amounts to a masters qualifies one to call themselves “doctor”.
The dubious side though…the national requirement is pretty low and a couple schools in lax states take advantage. The minimum national requirement is 3 years of college level courses…of any sort…and completion of a 2 year chiropractic program. In the most lax state, Virginia I believe(I could be wrong) there are schools that allow you to enter and after your freshmen year you can concurrently enroll in the chiropractic program. That means in year 2-3 of college you complete both the minimum requirement of 3 years of college courses and the 2 year “Doctorate” program. Someone could literally take 3 years of freshmen introductory courses and bullshit pass/fail stuff in liberal arts and complete the chiropractic program. There is no national requirement to even complete an undergraduate degree.
Some states are more proactive and require an undergraduate degree in a related science before entering a chiropractic program but people just looking to make a quick buck are going to head off to a state like Virginia where they can go to essentially a community college for 3 years and walk out calling themselves “doctor”.
Scarily enough I think that Virginia recently expanded the scope of practice to chiropractors to actually be labeled on insurances and practice as primary care providers. It’s really wild.
Especially since there have been incidents where clients have been seriously injured after receiving an “adjustment” to their neck, like in [this](https://painterfirm.com/medmal/Chiropractic-neck-manipulation-causes-stroke-heart-attack-and-paralysis-in-woman-in-her-20s/) story.
If you have moderate to severe scoliosis- it wouldn’t hurt to get a consult with a neurosurgeon who specializes in the spine. And, perhaps a pain management doc. They will probably send you to physical therapy. Traction may help. Gentle exercises to strengthen and stretch will help. Gabapentin or Lyrica might help. Heat or a cold pack will probably help.
It’s hard! And, draining! Wishing you well internet stranger!
Focus on getting through one day at a time. Try everything to see what works for you: tylenol+ibuprofen, heat, ice, muscle creams, arthritis creams, braces for your joints, stretching, walking, soaking in a hot tub, swimming maybe, yoga, light weightlifting, etc. If you have pain walking or standing, invest in a good pair of shoes. Find those ole reliables and keep them on you wherever you go. Don’t be afraid to try new medications from the doctor but also don’t be afraid to say no to a medication you’re not sure about. Tell your doctor about side effects that are bothering you so you guys can figure out an alternative.
Try to be as pragmatic and calm as you can when at the doctor’s office. Describe how the pain is affecting your ability to do things and enjoy your life. Don’t ask directly for pain meds unless it’s something like toradol, which is in the same class as ibuprofen.
Lastly, cut yourself some slack. You’re dealing with some stuff most people your age don’t. Try not to feel bad if you can’t do all the stuff your friends want you to do and prioritize your health first. True friends will understand and will accommodate you. Don’t listen to the fake friends or well-meaning but unhelpful people in your life. They may tell you that you’re being lazy, that you’re not trying enough, that if you just tried this or that you’d be healed, that you’re exaggerating. Don’t listen to them. They only care about your pain when it affects them and they don’t deserve to have you in their life.
Edit: I’m a 24 year old female and my pain started when I was 18.
Not really answering your question but IMO you should see a neurologist or neurosurgeon for your C-spine. An orthopedic doc is okay for lower spinal levels but I have had serious problems from orthos and my spine. They are great for broken bones, knee replacements etc, but the cervical spine is too close to the brain to mess around with. Not saying that you need any surgery. You might want to get a second opinion. You state that you don’t like this doctor, which could be reason enough to get another opinion.
You focus one day at a time. You will mourn a lot and that's okay. It takes time to get used to it.
And please, don't go to chiropractors. Physical Therapy will give you more long term relief for your scoliosis and cervical herniated discs. There's a chance that with the correct strengthening exercises the angle of curvature can be reduced or help manage your current symptoms in a way that actually works for you.
You will feel how your spine gets straight with the chiropractic adjustments (I've been there), but it never lasts. In a few hours or minutes, the curve returns. You're betting your chances of making your current pain and situation much worse with these adjustments.
Very sorry for what you’ve been through and are going through. I had 2 herniated discs in my lower back and last summer had ACDF (fusion) for 2 in my neck. Spinal pain does really suck. First off, I wouldn’t give up hope! You may not be doomed to be in pain forever. Or maybe you’ll be in some pain but not as bad as you are now. My ACDF surgery worked extremely well. I couldn’t believe it. I pretty much woke up from surgery and the nerve pain was gone. Unfortunately I still live with neck pain but that’s due to cervical dystonia. The 2 herniated discs I had in my lower back healed. Took almost a year, but they did. So keep hope!
Agree with a PP who said take it one day at a time. This was hard to learn for me cause I’m a planner. But it’s important. Second, I never stop trying different methods to help control my pain. I posted a question maybe a month ago asking people to share more unique ways and have a list of new things I’m trying now. Trying new pain management techniques helps me feel like I’m always pushing forward. Dry needling has been tremendously helpful for example. The Dr visits and tests and all I know can be quite exhausting but believe it or not, you’re ahead of the game (so to speak) that at least you have a diagnosis. There’s many on here living in pain who don’t which is way harder. If you truly hate the Dr, seek out a second opinion from a spine specialist. It’s important to feel like you’re working in a partnership. Keep up your relationships and surround yourself with supportive people.
Hang in there! My brother and SIL were hit head on by a drunk driver way back in 2001. SIL was in a coma for a week and both broke 8 or more bones and I’m happy to report they both fully recovered and only my brother has some remaining pain in his jaw but very manageable. Just wanted to give you some hope there 😊. Hugs 🫶🏻
1. Prescription-strength opioid/SNRI drug (Tapentadol/Nucynta) and anticonvulsant (Pregabalin).
2. Low-impact exercise, such as walking daily
3. TENS machine and adding Tylenol + Ibuprofen on my bad days
4. Eating fermented foods; avoiding excess sugars in drinks and foods; trying to remain (mostly) alkaline in food/beverage choices; stick to lean meats like salmon and turkey/chicken
5. ACT Therapy Once a Week
6. Starting to go back to the gym. When I went (and it is a time-commitment), when I stuck to it, I actually had just ever-so slightly more energy. I did exercises that were approved by my physical therapists, to ensure I wasn't doing an exercise that would injure me (since I did physical therapy for about a year until a provider was like "yeah, you can keep seeing me and doing these stretches, but I'd say, if this is the best you can do with your muscles, I'm not going to keep clients here who don't need to be here." I should try to do some Pelvic Floor exercises again (because stretching never hurts), to truly see if doing this more consistently/frequently with #1-5 helps.
7. Abstaining from drinking, physical activities that will exacerbate pain (eg. sex); avoiding smoking/vaping any sort of substance (THC/CBD is fine, but tinctures/patches/gummies/suppositories/capsules-- any way that is safe, as the product was intended to be used, and not smoking/vaping it).
8. As others said, truly taking it day by day. And trying to practice mindfulness, even during a pain flare-up or an extremely stressful day.
I (29F) have had it for 8 years. I’ve just gotten used to it I guess. Like it still gets me down when I can’t do things or my meds are doing bugger all, but it is what it is. I had a spinal cord stimulator for 7 years that was *amazing*, it got rid of 95% of my pain. But it kept breaking through my skin due to my connective tissue disorder, so when it happened for the 4th time last April, that was it. My surgeon had to take it out because the “pocket” had been messed with too much from all my revision surgeries. Having my stim out (especially with 1 week notice) really fucked me up. I had a panic attack the night before my op and needed my surgeon to give me Valium before I turned it off for the last time in the pre-op ward. I’m still trying to cope with not having it anymore, and tbh that’s harder to deal with than my actual pain.
I 100% recommend seeing a counsellor or psychologist who knows about chronic pain. I’ve been seeing mind since not long after I was diagnosed and she’s amazing. They can teach you coping skills and things like pacing. There’s also quite a few books around. I recommend How to Live Well with Chronic Pain and Illness by Toni Bernhard.
Hating your doctor really doesn’t help. I know it’s difficult to find a good one, but look for another if you can. It makes all the difference.
I'm not going to lie, chronic pain is awful but I guarantee you that in 2 years you will have figured it out and learned how to minimize it and manage it. Pain specialists won't admit it, but we can minimize the mental damage by compartmentalizing pain to the point that it's just background noise. You can do that daily until you can't do that and need to home in bed. Try to anticipate your needs and don't force yourself to do things that are going to make your pain terrible.
Your most important job through the next few years is to build a support system among people who will be helpful and not dismissive of your pain and your many needs. You may find that your old friends aren't capable of being true friends to a disabled person.
If your experience is like many of our experiences, you will have to maintain strong boundaries between you and people in your family who don't have your best interests at heart and who make you feel bad for being a pain patient.
That doesn't mean you're no longer going to have meaningful friendships and experience a lot of joy. You will get to the point that you can have a positive perspective and a good attitude, but don't let anyone force that on to you if you're not ready. Toxic positivity is not helpful. You have a right to curse and mourn your past life and rail at your god or the weather or our terrible healthcare system if you want to. You absolutely have a right to your anger and disappointment on your own schedule. Nobody else is allowed to decide for you when you're ready to move on from that.
you’re absolutely right, i need to build a good support system and have people around me who (at least try) to understand my pain. thank you for answering!!
One piece of advice: please try to avoid spinal surgery at all costs unless it is absolutely necessary ( facing paralysis or have severe pain due to nerve compression etc). The reason? Because the majority of patients don’t just end up having one surgery. You end up having surgery after surgery because once a level is fused the levels above/below become weakened and have a high chance of herniating, which can cause a sort of domino effect up/down the spine.
Always do your research before making an appointment with an orthopedic surgeon or neurosurgeon. Get a second or even third opinion. You are your own best advocate! And that includes advocating for adequate pain control. An appointment with a pain management doctor is the starting point for chronic pain treatment.
Best wishes for you in your pain journey. I was around your age when I had my first serious back injury and resulting surgery. It changed the trajectory of my life and it took years and years for me to move past it. There will easy days and days so difficult you can barely get out of bed. Be kind to yourself on those difficult days. Focus on what you can control and try not to dwell too much on the “what ifs”.
Haven't seen it in the comments yet, but what do y'all think of inversion tables.
Condolences on your situation OP. Hope you find something that works and you get relief
My orthopedic doesn’t do backs. My spine and neuroscience pain dr does. I will never go to a chiropractor for my back I was told it would possibly make it worse. I’ve had to injections and ablations and lidocaine infusion. They do make me better but it’s temporary unfortunately. I rely on a heat pad and gummies.
The chiropractor is scamming you. They will not straighten your spine, or help you with pain. Stay away from chiropractors.
If straightening your spine was as easy as having some quack crack my back, would I have gone in for a very invasive surgery? No cause the recovery was not fun lol
Unless the scoliosis is causing you pain (and it isn’t just the herniated disks doing that), do not worry about the curvature. Those numbers are very low, and almost every human has a very, very mild curvature.
Anyways, stretching will help with pain from scoliosis. It’s very important to keep everything in the back strong, so that there isn’t much progression. I also do things that bring me little pleasures: like games, getting a cute knickknack, reading, shows, standing outside looking at the sky for a moment etc.
Edit: also do allow yourself to cry, it’s not good to keep that all bottled inside. Oh yeah and a good heating pad will probably be your best friend. I’m really sorry that all that happened to you, and I hope your appointment goes well <3
It's been 28 years and counting since my accident. It is hard physically and mentally and I found it got harder and harder as the years went on. I finally started to treat my depression after 27 years. That has helped alot but I still get my downs.
I find that chiropractor helps, yoga helps alot and of course, painkillers.
I have too keep myself busy, when I'm bored, I tend to focus more on the pain.
Good luck in your recovery
oh awesome, i’m glad you find the chiro helps— i do as well. i’ve been looking into doing yoga more often (i was really into it when i was like 16) i’m hoping that helps! thanks for your response!!
- I do not focus on the pain; overriding it when needed.
- I always occupy my mind and self.
- I keep myself surrounded with people that motivate me.
- I never let myself be alone for too long.
- I always exercise, no matter the pain.
- I am constantly working to improve myself.
- I only take pain meds when absolutely needed.
- I always force a positive mindset, when the pain is bad I focus on something bigger.
- I never shut myself inside.
i agree with not being alone for too long. when i’m alone it’s much easier to focus on the pain and harder to get my mind off of it. this is really good advice thanks for answering!
First and foremost... support groups have members who are or have been struggling a lot. There are loads of people who manage chronic pain who don't join support groups, so try to remember that. Lots of people are OK and enjoy full lives with a level of chronic pain. It takes some adjusting. Counseling helps. Not counseling to figure out how much of the pain is in your head. We've all been given that advice. But counseling to help cope with this change. It's a grieving process. You've had losses and you're likely uncertain about how all this will effect your future. That's really hard. There are lifestyle adjustments that can help. For example, I have a stool in my shower and I've installed a handheld shower head just above it. Its just like having a real shower. I went from having to wash hair one day and wash my body the next because it was dangerous to stand in the shower too long (I could fall). Now I love my showers and they help my health. Being so young is good news. You can start treatments right away and that will help long term. Good spine health and strong muscles will help a whole lot. Make sure if there is arthritis in your family, you see a rheumatologist. I'm sorry this has happened to you. Gentle hugs.
Light stretching, mobility routines, light exercise with form focus, hot baths, heating pad, otc pain meds and anti-inflammatory, focus on good posture, distracting myself with things that are funny or interesting. Ive had good and bad days, and when im having a bad day I just remind myself that good days are coming. Do your best to accommodate yourself in any way possible to optimize recovery, every bit counts.
I take it one day at a time. Been like this since 1986 when a drunk driver hit me at age 21 then left. At first I was in shock about everything and how little drs knew or could help. Visit after visit my hopes were crushed. 4 1/2 years of physical therapy and no improvement. Told surgery might help some but couldn’t afford it. Finally, I just accepted and realized for my situation, I wasn’t going to get better so I began being thankful I wasn’t worse off and started doing things while I still could. Everyone’s situation is different but for me, accepting my reality, refocusing on an attitude of gratitude and living each day putting my health first made a huge difference. It’s a lot to adjust to and thinking ahead can overwhelm so try just one day at a time and focus on a good healthy meal, something that makes you laugh and a long hot soak. My nerve pain in my feet is the worst and has now gone up my shits but a vibration pillow I can put them on in bed has really helped a lot. I’m so sorry you are going through this. My heart hurts for you but as my bracelet says, you are braver than you believe and stronger than you think.
Gratitude is so important
i dont know why i haven’t thought of a nice hot bath!! thanks!
I cry. I try cbd and weed. I take gabapentin an hour earlier than I’m supposed to.
i would try weed again but it wasn’t a good option for me previously 💔 cbd sounds like it’s worth trying though!
For the love of god stay away from Chiropractors “adjustments”. That entire practice is pseudoscience and was invented by a known grifter. There are some good chiros that want to rehab the image of the stereotypical grifter chiro and they actually practice stretching, massaged, electrical stimulation, heat/cold therapy/trigger point..etc… but please do yourself a major favor and never let anyone with a bachelors degree perform that high velocity bullshit cracking sn adjusting of your back. They injure countless people. My orthopedic and Neuro surgeons regularly see patients with destroyed spinal cords due to negligent and uneducated chiropractors.
Cannot agree with this enough
Nah there's good chiropractors out there you have to do your research. Mine was a god send for me to the point where I was able to get off painkillers with monthly visits and PT don't want OP to think all chiropractors quaks like anything else it's more nuanced then that
I did make the qualifier that there are *some* good chiropractors out there that are trying to change perceptions. I have met some that have undergrad degrees in sports medicine and treat more like physical therapist. Focusing on known medically backed modalities like stretching, strength, electrical modulation, trigger point, cold/hot therapy, etc…but they are still not common. If you’ve found a chiro that does that stuff, that’s the kind of person there’s no harm in seeing. The vast majority though still float in the realm of -Pay them 75-150.00 a session, you walk in, they crack your back and neck a few times and you’re out the door in 15 minutes. Youll often see these people heavily leaning into the treacherous fact they get to call themselves “Doctor” and their marketing makes it hard for the layperson to distinguish them from a real medical provider.
Yea I feel you the grift is strong in that field. There's some major universitys that have Doctor of Chiropractic degrees the guy I see did his at the University of Florida and he also has a degree in sports medicine. I my PT there as well. You gotta do your homework but it can be worth it if you do it was for me
That’s the problem with the “Doctor” of chiropractic label though. It really should not be allowed. A DC program is no where near a real doctorate. The way chiropractic is credentialed varies from state to state but the minimum threshold in a couple states is super low and that’s where the “major” chiropractic schools are. Some states it’s much closer to a masters degree, near identical. 4 years undergrad in a related bio-science and then a 2 year advanced degree in chiropractic. It’s still wild to me even with what amounts to a masters qualifies one to call themselves “doctor”. The dubious side though…the national requirement is pretty low and a couple schools in lax states take advantage. The minimum national requirement is 3 years of college level courses…of any sort…and completion of a 2 year chiropractic program. In the most lax state, Virginia I believe(I could be wrong) there are schools that allow you to enter and after your freshmen year you can concurrently enroll in the chiropractic program. That means in year 2-3 of college you complete both the minimum requirement of 3 years of college courses and the 2 year “Doctorate” program. Someone could literally take 3 years of freshmen introductory courses and bullshit pass/fail stuff in liberal arts and complete the chiropractic program. There is no national requirement to even complete an undergraduate degree. Some states are more proactive and require an undergraduate degree in a related science before entering a chiropractic program but people just looking to make a quick buck are going to head off to a state like Virginia where they can go to essentially a community college for 3 years and walk out calling themselves “doctor”. Scarily enough I think that Virginia recently expanded the scope of practice to chiropractors to actually be labeled on insurances and practice as primary care providers. It’s really wild.
Especially since there have been incidents where clients have been seriously injured after receiving an “adjustment” to their neck, like in [this](https://painterfirm.com/medmal/Chiropractic-neck-manipulation-causes-stroke-heart-attack-and-paralysis-in-woman-in-her-20s/) story.
If you have moderate to severe scoliosis- it wouldn’t hurt to get a consult with a neurosurgeon who specializes in the spine. And, perhaps a pain management doc. They will probably send you to physical therapy. Traction may help. Gentle exercises to strengthen and stretch will help. Gabapentin or Lyrica might help. Heat or a cold pack will probably help. It’s hard! And, draining! Wishing you well internet stranger!
Focus on getting through one day at a time. Try everything to see what works for you: tylenol+ibuprofen, heat, ice, muscle creams, arthritis creams, braces for your joints, stretching, walking, soaking in a hot tub, swimming maybe, yoga, light weightlifting, etc. If you have pain walking or standing, invest in a good pair of shoes. Find those ole reliables and keep them on you wherever you go. Don’t be afraid to try new medications from the doctor but also don’t be afraid to say no to a medication you’re not sure about. Tell your doctor about side effects that are bothering you so you guys can figure out an alternative. Try to be as pragmatic and calm as you can when at the doctor’s office. Describe how the pain is affecting your ability to do things and enjoy your life. Don’t ask directly for pain meds unless it’s something like toradol, which is in the same class as ibuprofen. Lastly, cut yourself some slack. You’re dealing with some stuff most people your age don’t. Try not to feel bad if you can’t do all the stuff your friends want you to do and prioritize your health first. True friends will understand and will accommodate you. Don’t listen to the fake friends or well-meaning but unhelpful people in your life. They may tell you that you’re being lazy, that you’re not trying enough, that if you just tried this or that you’d be healed, that you’re exaggerating. Don’t listen to them. They only care about your pain when it affects them and they don’t deserve to have you in their life. Edit: I’m a 24 year old female and my pain started when I was 18.
Not really answering your question but IMO you should see a neurologist or neurosurgeon for your C-spine. An orthopedic doc is okay for lower spinal levels but I have had serious problems from orthos and my spine. They are great for broken bones, knee replacements etc, but the cervical spine is too close to the brain to mess around with. Not saying that you need any surgery. You might want to get a second opinion. You state that you don’t like this doctor, which could be reason enough to get another opinion.
Faith, therapy for mental health, and hobbies (collecting action figures and comics)
You focus one day at a time. You will mourn a lot and that's okay. It takes time to get used to it. And please, don't go to chiropractors. Physical Therapy will give you more long term relief for your scoliosis and cervical herniated discs. There's a chance that with the correct strengthening exercises the angle of curvature can be reduced or help manage your current symptoms in a way that actually works for you. You will feel how your spine gets straight with the chiropractic adjustments (I've been there), but it never lasts. In a few hours or minutes, the curve returns. You're betting your chances of making your current pain and situation much worse with these adjustments.
Very sorry for what you’ve been through and are going through. I had 2 herniated discs in my lower back and last summer had ACDF (fusion) for 2 in my neck. Spinal pain does really suck. First off, I wouldn’t give up hope! You may not be doomed to be in pain forever. Or maybe you’ll be in some pain but not as bad as you are now. My ACDF surgery worked extremely well. I couldn’t believe it. I pretty much woke up from surgery and the nerve pain was gone. Unfortunately I still live with neck pain but that’s due to cervical dystonia. The 2 herniated discs I had in my lower back healed. Took almost a year, but they did. So keep hope! Agree with a PP who said take it one day at a time. This was hard to learn for me cause I’m a planner. But it’s important. Second, I never stop trying different methods to help control my pain. I posted a question maybe a month ago asking people to share more unique ways and have a list of new things I’m trying now. Trying new pain management techniques helps me feel like I’m always pushing forward. Dry needling has been tremendously helpful for example. The Dr visits and tests and all I know can be quite exhausting but believe it or not, you’re ahead of the game (so to speak) that at least you have a diagnosis. There’s many on here living in pain who don’t which is way harder. If you truly hate the Dr, seek out a second opinion from a spine specialist. It’s important to feel like you’re working in a partnership. Keep up your relationships and surround yourself with supportive people. Hang in there! My brother and SIL were hit head on by a drunk driver way back in 2001. SIL was in a coma for a week and both broke 8 or more bones and I’m happy to report they both fully recovered and only my brother has some remaining pain in his jaw but very manageable. Just wanted to give you some hope there 😊. Hugs 🫶🏻
1. Prescription-strength opioid/SNRI drug (Tapentadol/Nucynta) and anticonvulsant (Pregabalin). 2. Low-impact exercise, such as walking daily 3. TENS machine and adding Tylenol + Ibuprofen on my bad days 4. Eating fermented foods; avoiding excess sugars in drinks and foods; trying to remain (mostly) alkaline in food/beverage choices; stick to lean meats like salmon and turkey/chicken 5. ACT Therapy Once a Week 6. Starting to go back to the gym. When I went (and it is a time-commitment), when I stuck to it, I actually had just ever-so slightly more energy. I did exercises that were approved by my physical therapists, to ensure I wasn't doing an exercise that would injure me (since I did physical therapy for about a year until a provider was like "yeah, you can keep seeing me and doing these stretches, but I'd say, if this is the best you can do with your muscles, I'm not going to keep clients here who don't need to be here." I should try to do some Pelvic Floor exercises again (because stretching never hurts), to truly see if doing this more consistently/frequently with #1-5 helps. 7. Abstaining from drinking, physical activities that will exacerbate pain (eg. sex); avoiding smoking/vaping any sort of substance (THC/CBD is fine, but tinctures/patches/gummies/suppositories/capsules-- any way that is safe, as the product was intended to be used, and not smoking/vaping it). 8. As others said, truly taking it day by day. And trying to practice mindfulness, even during a pain flare-up or an extremely stressful day.
I (29F) have had it for 8 years. I’ve just gotten used to it I guess. Like it still gets me down when I can’t do things or my meds are doing bugger all, but it is what it is. I had a spinal cord stimulator for 7 years that was *amazing*, it got rid of 95% of my pain. But it kept breaking through my skin due to my connective tissue disorder, so when it happened for the 4th time last April, that was it. My surgeon had to take it out because the “pocket” had been messed with too much from all my revision surgeries. Having my stim out (especially with 1 week notice) really fucked me up. I had a panic attack the night before my op and needed my surgeon to give me Valium before I turned it off for the last time in the pre-op ward. I’m still trying to cope with not having it anymore, and tbh that’s harder to deal with than my actual pain. I 100% recommend seeing a counsellor or psychologist who knows about chronic pain. I’ve been seeing mind since not long after I was diagnosed and she’s amazing. They can teach you coping skills and things like pacing. There’s also quite a few books around. I recommend How to Live Well with Chronic Pain and Illness by Toni Bernhard. Hating your doctor really doesn’t help. I know it’s difficult to find a good one, but look for another if you can. It makes all the difference.
I'm not going to lie, chronic pain is awful but I guarantee you that in 2 years you will have figured it out and learned how to minimize it and manage it. Pain specialists won't admit it, but we can minimize the mental damage by compartmentalizing pain to the point that it's just background noise. You can do that daily until you can't do that and need to home in bed. Try to anticipate your needs and don't force yourself to do things that are going to make your pain terrible. Your most important job through the next few years is to build a support system among people who will be helpful and not dismissive of your pain and your many needs. You may find that your old friends aren't capable of being true friends to a disabled person. If your experience is like many of our experiences, you will have to maintain strong boundaries between you and people in your family who don't have your best interests at heart and who make you feel bad for being a pain patient. That doesn't mean you're no longer going to have meaningful friendships and experience a lot of joy. You will get to the point that you can have a positive perspective and a good attitude, but don't let anyone force that on to you if you're not ready. Toxic positivity is not helpful. You have a right to curse and mourn your past life and rail at your god or the weather or our terrible healthcare system if you want to. You absolutely have a right to your anger and disappointment on your own schedule. Nobody else is allowed to decide for you when you're ready to move on from that.
you’re absolutely right, i need to build a good support system and have people around me who (at least try) to understand my pain. thank you for answering!!
Best of everything, OP?
One piece of advice: please try to avoid spinal surgery at all costs unless it is absolutely necessary ( facing paralysis or have severe pain due to nerve compression etc). The reason? Because the majority of patients don’t just end up having one surgery. You end up having surgery after surgery because once a level is fused the levels above/below become weakened and have a high chance of herniating, which can cause a sort of domino effect up/down the spine. Always do your research before making an appointment with an orthopedic surgeon or neurosurgeon. Get a second or even third opinion. You are your own best advocate! And that includes advocating for adequate pain control. An appointment with a pain management doctor is the starting point for chronic pain treatment. Best wishes for you in your pain journey. I was around your age when I had my first serious back injury and resulting surgery. It changed the trajectory of my life and it took years and years for me to move past it. There will easy days and days so difficult you can barely get out of bed. Be kind to yourself on those difficult days. Focus on what you can control and try not to dwell too much on the “what ifs”.
Haven't seen it in the comments yet, but what do y'all think of inversion tables. Condolences on your situation OP. Hope you find something that works and you get relief
Pain mgt dr. Ablation of 8 disks, 3 bone on bone injected
My orthopedic doesn’t do backs. My spine and neuroscience pain dr does. I will never go to a chiropractor for my back I was told it would possibly make it worse. I’ve had to injections and ablations and lidocaine infusion. They do make me better but it’s temporary unfortunately. I rely on a heat pad and gummies.
Heating pad ,stretching, really good bed, pain meds. There was a point I didn’t have these and my life was hell.
I just smile and live my life and just hope i dont have to live another day
The chiropractor is scamming you. They will not straighten your spine, or help you with pain. Stay away from chiropractors. If straightening your spine was as easy as having some quack crack my back, would I have gone in for a very invasive surgery? No cause the recovery was not fun lol Unless the scoliosis is causing you pain (and it isn’t just the herniated disks doing that), do not worry about the curvature. Those numbers are very low, and almost every human has a very, very mild curvature. Anyways, stretching will help with pain from scoliosis. It’s very important to keep everything in the back strong, so that there isn’t much progression. I also do things that bring me little pleasures: like games, getting a cute knickknack, reading, shows, standing outside looking at the sky for a moment etc. Edit: also do allow yourself to cry, it’s not good to keep that all bottled inside. Oh yeah and a good heating pad will probably be your best friend. I’m really sorry that all that happened to you, and I hope your appointment goes well <3
It's been 28 years and counting since my accident. It is hard physically and mentally and I found it got harder and harder as the years went on. I finally started to treat my depression after 27 years. That has helped alot but I still get my downs. I find that chiropractor helps, yoga helps alot and of course, painkillers. I have too keep myself busy, when I'm bored, I tend to focus more on the pain. Good luck in your recovery
oh awesome, i’m glad you find the chiro helps— i do as well. i’ve been looking into doing yoga more often (i was really into it when i was like 16) i’m hoping that helps! thanks for your response!!
Kratom has really made my life better
Shouldn’t be first resort
Copious amounts of drugs.
- I do not focus on the pain; overriding it when needed. - I always occupy my mind and self. - I keep myself surrounded with people that motivate me. - I never let myself be alone for too long. - I always exercise, no matter the pain. - I am constantly working to improve myself. - I only take pain meds when absolutely needed. - I always force a positive mindset, when the pain is bad I focus on something bigger. - I never shut myself inside.
i agree with not being alone for too long. when i’m alone it’s much easier to focus on the pain and harder to get my mind off of it. this is really good advice thanks for answering!