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OP, my heart swells for you. I am so sorry you are experiencing so much pain. It is such a silent and solo walk through, well, hell.

On the support side: there is an awesome org called 7 Cups of Tea that is "free, anonymous, and confidential conversations with trained active listeners. All conversations are deleted." It could be a great resource when you need someone to listen.

On the back pain side, one suggestion to look into with an open mind is John Sarno's method for solving chronic pain and RSI injuries called "The Mind-Body Prescription". I'm sure you can google the info you need, but just in case here is his book.


I have two friends who are incredibly intelligent, healthy, athletic men who, in their 20's, were healed by his method. One experienced such bad pain from typing that he couldn't hold his wife's hand, hold groceries, anything. He tried everything he could think of and nothing worked for long. The other would be woken from his sleep because of his pain and was planning to leave the company he started for a period of time because the pain was too terrible. They are rational, wonderful, amazing people and this ACTUALLY cured them, within a few days. They wrote about their story on Quora here

Dr. Sarno describes the type of people who most often benefit from his treatment/tend to have these chronic pain issues:
"They tend to be perfectionistic, compulsive, highly conscientious and ambitious; they are driven, self-critical and generally successful. Parallel with these traits, and sometimes more prominent, is the compulsion to please, to be a good person, to be helpful and nonconfrontational. In short, people with TMS have a strong need to seek approval, whether it is love, admiration or respect."
Does this sound like you?

If yes, keep an open mind and explore his work. I do hope with all my heart you are on the road to recovery soon.

27 years of chronic phantom pain and disability.
Over that time as the increasing negative effects of pain I lost more and more friendships, but saying that it’s fully important to recognise I was also just getting more mature and had less desire to go out on the piss with mates and chase the girls.
In the past 5 years marriage and our first child also occurred during the time I had the worse care & medication, and came very very close to being performance managed out of my 10yr career. So that was a shitstorm and a half.

Recognising the extremely real threat of traditional fulltime employment being no longer possible I decided to drop all socialising and focus any extra energy on setting up a side-gig. This meant 5am starts every single day, and a significant portion of weekends.
I had no choice really, so that made it easier to accept the loss of friendships. I miss them, of course. But the motivation of doing everything within my power to keep our family unit together, well.. it was powerful really.

Its very hard on me when I have issues I don’t want to share with my Wife. I can share them with 2 close colleagues at work, but that’s not on-tap, so can come to late.

That’s enough of my history, how about some suggestions? I got great benefit from reading books like “The Book of Joy: Lasting Happiness in a Changing World. By the Dalai Lama and Desmond Tutu. https://www.amazon.com/Book-Joy-Lasting-Happiness-Changing-ebook/dp/B01CZCW34Q/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1505429551&sr=1-1&keywords=dalai+joy

I turned to books & podcasts and did a version of self-therapy. It resolved 95% of issues to do with acceptance. I’m not exaggerating.

If I didn’t have a wonderful understanding & loving Wife, and my Son who is nearly 3, I would either a drug addict, a drunk.. or a monk. Or perhaps all 3. Yeah, that sounds pretty good.

[EDIT: Sorry forgot how rewarding becoming a vegie gardener, and vegan, has been.}

I am a big fan of exercise, it can even help with pain from skeletal malformations. But will it help you? Maybe, maybe not. All you can do is try and see if it helps. You need to exercise for your general health so it's not like it was a waste of time if it doesn't help your pain (well, if it makes your pain worse it is).

Yoga can be very easy if you find the right class and teacher. And I would recommend a teacher because a teacher can show you gentler or alternative poses and correct your alignment so you don't hurt yourself. Especially if you have back issues the teacher will tell what NOT to do. Yoga should not hurt, ever. If it does you're working it too hard. Look for gentle hatha yoga classes, either beginner's yoga or even senior yoga. Go to a class once or twice a week, or get private lessons, and then practice at home daily. You don't have to practice an hour either. 15-20 minutes is good. It does take a long time to see results, like months. It's a gradual process but it does really help. It will increase both your abdominal core strength and the strength of your back muscles, as well as stretch things out and limber them up. /r/yoga can answer your yoga questions.

Yoga classes typically include a relaxation session, also very helpful for relaxing muscles.

In addition to yoga, or instead of, you can do gentle back exercises. I cured my sciatica with this book. These exercises are gentle enough to do daily.

Pilates can help with core strength but that might be too much to start with.

When you get stronger you may want to look into DDP yoga which combines yoga with strength. You can find videos on youtube that explain it. https://ddpyoga.com/

Have they recommended physical therapy? Sometimes it's a question of getting things stretched out and breaking up scar tissue. This was the issue I had with my neck. Old injury plus arthritis lead to max pain. PT was not easy but it helped a lot.

I'm not sure if you have health insurance, but when I couldn't find a doctor to help me, I wound up calling my insurance company and asking for a case manager. (Full disclosure: my mother used to manage a group of case managers, so I know a bit about them) Insurance companies usually like this because it keeps you out of emergency rooms and the CM will help you get the appropriate care and even help you find doctors. Again - this solution depends on you having health insurance and also on that company not being super douche-y.

I also have chronic migraines and you need to stay on those meds no matter what. See if you can get more refills from your last doctor - in Maine. I get those meds from my PCP who is just an internal med doc. Whomever you see should be able to fill those scripts for you. I would NOT give them all your medical records at the first visit if you can possibly help it. You are a patient who has chronic migraines and your simple explanation of those symptoms should be enough to get you migraine meds. Make them get your records themselves, or go through your records and take only the time frame after you got off the opioids you don't use until present. And I would not start by asking for other pain meds.

I just moved from CA to WA last year and it took me a year to find a PCP (I'm super picky and my dr from CA agreed to treat me over the phone until I found a new doc). On the first visit she told me she didn't agree with opioids and that if I wanted them she would need all my records and I would have to sign the pain med agreement (they have one in CA too, no biggie). But I saw her 4 weeks later after she got my records and she was all ready to switch the pain meds from the CA dr to her. I think doctors just don't want to come across as easy to get pain meds from and so they make the beginning hard. It's possible you might get a lousy doctor - there are lots of them (source: my father was a doctor for 40 years) and they suck. But if you have real pain (and you have the symptoms to back that up), a decent dr will help you. God - at least I hope that's true.

This is probably not as helpful as it could be - as I know no one in FL. But it was all I could think of to tell you. I've been in your situation and changing doctors is no easy task. I hope you find someone soon. Not someone perfect or even excellent (though that would be awesome!), just someone who listens and believes you. Best of luck.

PS: One of the best books I've found to be helpful is How Doctors Think. Check it out - http://www.amazon.com/How-Doctors-Think-Jerome-Groopman/dp/0547053649/ref=sr_1_1?ie=UTF8&qid=1370992081&sr=8-1&keywords=how+doctors+think

I used to give my full medical typed history to ever doctor at the first appointment. After reading this book I started using an abbreviated version. Because first impressions are important. Don't lie if asked a direct question - but don't list your history from when you were 11 - you're not the same person now. Tell them what is relevant now.

Get a good quality neck cushion. I have a memory foam one that connects at the front gently so you don’t do the head bobbing thing. Even An inflatable one that holds you steady will really help.

Second get that massage and take your icy hot patches through security in your carry on and put them on once you get through.

Third request wheelchair service at the airport. You may think you can walk fine but what people forget about is the standing in line and lifting/lugging bags. I’m early 30s and hate to use it but it’s a game changer for your comfort.

Fourth if you can find one or have time to order from amazon, consider an inflatable square that goes under your feet if you have lower back pain. It flattens to nothing and takes a few breaths to inflate. There are varying sizes and it’s been a huge benefit for me when flying. If you’re really tall or not worried about lower back pain, skip this one.

Here’s the neck pillow I love.
Here’s the blow up footstool I love.
Here’s an alternate footstool I tried and liked.
Here’s a full body cushion I tried but wasn’t right for me. Could help you though because we have different pain.

Ps I don’t get anything from this from amazon. These are actual products I bought and tried. Some I love. Some didn’t work for me.

Good luck!

I have just come out of a year and a half of extreme neck/shoulder/upper back problems that truly made me want to kill myself so I sympathize, they can be utterly debilitating. None of my advice is a quick fix (I'm still struggling with it) but if I can be of any help, here's my experience:

I was unfortunately strangely reactive to massage (which I'd always been fine with before), so in my case, all well meaning treatments like massage, osteopathic manipulation, acupuncture, and trigger point injections were making it worse, because my body would react poorly to the treatment and tighten up worse. I found the best thing that helped me was quitting all messing around with my neck and just focusing on relaxation, heat, and SLOW guided strengthening from a very good PT. It's good that you're strength training, but it might be best to get extremely detailed advice on form, and have someone monitor you to see if an exercise is helping or hurting. You also might be doing too much.

The other thing that helped me was going to a therapist who did guided relaxation with me. You can find guided meditation relaxation videos on youtube. Do them daily. The pain causes us to hold onto the tension even more, because of fear. It's a constant task to remind yourself to relax all day long.

I take 400mg of Magnesium Glycinate a day, 800mg on days I'm feeling worse.

I live in hot baths with Epsom salts.

Weed is a big relaxation bomb for the muscles, if you can get ahold of some (I'm lucky to live in a legal state). Muscle relaxers are also a good tool periodically. If you're really wracked up, Valium is by far the best muscle relaxer I've tried, it seems to reset everything. However, be very careful not to take it too often: I take it no more than two times a month because you can very quickly get dependent and then suffer withdrawals.

Periodic rest is important. If your muscles are becoming exhausted, lie down for 45 minutes on your back and let them rest. We compensate with the wrong muscle patterns when the muscles get exhausted.

I have this microwaveable neck wrap, 1.5 minutes in the microwave, feels so good!: https://www.amazon.com/Huggaroo-Microwavable-Heating-Herbal-Aromatherapy/dp/B071JFYTLD

Ugh, I am so sorry you are at this point. I am not going through it right now but that is only because I figured out a way through it. The pain and exhaustion and anxiety are always there for me, but I can manage my life with them in it now, if that makes sense. Rick bottom is a miserable and lonely place and the sooner you can get out of there, the better. May I recommend a book that really helped me? It just gave me a sort of silent but useful guide through the misery. http://www.amazon.com/gp/aw/d/1593859821?pc_redir=1404067965&robot_redir=1
Best of luck-- take good care of yourself and revel in the good moments. This is a brutal experience but it gives you a push towards rewriting your life into something that works for you, and that really can be a positive experience. I had a cool life before and did much more, but in some ways I am happier now. And I am for sure more stable.
I really hope you feel better soon.

Was your fusion due to a trauma, or a degenerative condition? Mine was trauma-related (car accident) and I was fused T2-T10 (yes, fml) for a little over five years. I had ALL of the hardware removed about a year ago, and if that''s at all an option for you, it's one I highly recommend.

Beyond that, I gotta say, it's not easy. I tried just about everything they could throw at me (drugs, TENS unit, physical therapy, more drugs, injections) and honestly the only things that really worked were (Western) drugs, acupuncture, and some weird Chinese medicine shit that my acupuncturist gave me (google 701 plaster on amazon...or, hell, https://www.amazon.com/Medicated-Plaster-Genuine-Solstice-Product/dp/B001NN5QP2). Getting the hardware removed made my life livable, or at least...tolerable...again.

I would stay as far away from chiropractors as humanly possible, btw. You'd have better luck going to the dentist.

Obvs narcotics have their problems, but they were often truly the difference between me being able to fucking move out of my bed or being stuck in the same position for 8 hours at a time. It's best to ignore the noise from people squawking about "the opioid crisis!" and do what you have to do. It's easy for them to lose sight of the fact that for SOME people, these medications are medically necessary and not everybody is a frickin' pill-head or whatever the over-40s set are calling it these days. Chronic pain, especially when extreme, changes your entire stupid life, your habits, even your personality.

That being said, there are a few other meds that made life easier as well - you're probably on one or two of them already. Gabapentin is great for nerve pain. I started taking Cymbalta (generic: duloxetine) and that helped tons (it's also an anti-depressant, which frankly might help also, but fair warning, it's an SNRI so I recommend reading up on it first), and after my friend gave me some of his to try, I had my doc put me on Celebrex as well. Holy fuck, the Celebrex was a revelation (it's basically an NSAID on crack - great for inflammation, especially for people with hardware!)...I also go back and forth between tizanidine (Zanaflex) and baclofen for muscle spasticity.

Also, DISTRACTION. I try to always be doing at least two things at once - I'm never just watching TV; I'm watching TV and playing a game, or knitting, or doing origami, or coloring...etc. The busier you can keep your mind, the better. And when all that fails, go for a walk. I've heard for lumbar fusions, walking really helps.

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I wish I could say it would all get better, but frankly I heard that from doctors and nurses and the internet and it only made me bitter when I realized shit wasn't getting better at all. But, you do get used to it (for whatever that's worth). Sorry I don't have more encouraging words, but having sunshine blown up one's ass isn't all that helpful (in my experience).

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Good luck! LMK if you have any questions :)

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edit: also, take magnesium. shit's legit.

Hi!

I used to get massages by a PT as well, and the type of massage that worked best for my pain was a deep tissue trigger point massage, which I believe is similar to the massage you've said is effective for you. As you mentioned, that easily becomes expensive, but my neurologist turned me on to a much cheaper solution. I do home massage therapy on myself using a Theracane and workbook and get the same benefits I was getting from having the massage done to me by a PT. I'm posting this from mobile so pls message me if links don't work. This way I can also get exactly the relief I want where I want it and most importantly when I want it.

There are what I call "Sheepie" blankets that I get from Costco. They aren't faux fur exactly, but they are super soft velour stuff on one side and faux sheep skin on the other.


I have a robe made of the same velour-ish material - https://www.amazon.com/Carole-Hochman-Ladies-Plush-Wrap/dp/B07MQG9DXC/ref=pd_lpo_sbs_193_img_2?_encoding=UTF8&psc=1&refRID=B708N4HHHQSKZP6AAKFG

and I acquire more blankets randomly because yeah, for me, soft helps.


I like these when it's too warm for sheepie blankets - https://www.amazon.com/Flannel-Fleece-Luxury-Blanket-Lightweight/dp/B06Y2T3LCY

I've had great success with using capsaicin cream.

https://www.amazon.com/Zostrix-Potency-Arthritis-Relief-Cream/dp/B000F5IEK8

I apply a small amount once a day with a glove on.


I've also used almost all the TCA's, they take upwards of a month to have a positive response with them. You need to be careful, as they are very easy to overdose on, especially when taken in conjunction with other medications.

Sunbeam makes one for neck, shoulders and upper back. It isn't cheap, bt it is the best I've ever owned ad I have gifted some to family and they love them to. The link posted is Amazon, however many large drug stores sell them as well. Note the way it is made. The collar has a strong magnetc clasp if you want to use itthat way.

https://www.amazon.com/Sunbeam-Renue-Heat-Therapy-Wrap/dp/B00LX5CR0M/ref=sr_1_1_a_it?ie=UTF8&qid=1483646253&sr=8-1&keywords=Sunbeam%2BRenue%2BHeating%2BPad%2BX-Large&th=1

This is what i have, Dr House hot rod flames, but it's carbob fibre and folding so it's light and you can put it in a bag if you're feeling well enough to put it away :) It's a lot more expensive than drug store canes but mine is about 8 years old and looks new whereas the drug store ones wear out very fast

https://www.amazon.com/House-Walking-Folding-Adjustable-Carbon/dp/B002YG00JY


Edit: check the height you need at the drug store. I'm pretty short so even the smallest one is a bit tall for me.

Butrans is pretty amazing. Though if you go with ANY of the patches listed here, be sure to get a clear waterproof bandage to make sure it stays on all week

Doctors don't specialize or receive much education on muscle disorders, don't be surprised if he's not familiar with the disorder or the modern treatment protocol.

If you do have MPD: it is good news, it is treatable, sometimes partially and sometimes completely.

https://www.painscience.com/tutorials/trigger-points.php

Here's an intro, this site is great, the guy does good science. I haven't bought this ebook yet though.

https://www.amazon.com/Trigger-Point-Therapy-Workbook-Self-Treatment/dp/1608824942

here's the book that will help you recover.

Thank you for the good wishes. As for your situation - I suggest you try reading this book https://www.amazon.com/Healing-Back-Pain-Mind-Body-Connection/dp/0446557684 . It has helped me only somewhat since I have quite some degree of degeneration in certain areas of the spine, so not sure any amount of psychotherapy would help there, but he does have really good points and I have managed to resolve some of my flare ups with this approach.

Basically he is suggesting something such as - that a lot of body pain comes from ignoring emotions and pushing yourself way over the limit and tends to create these types of issues. Usually tends to happen to highly perfectionist type A people who tend to have tons of internal pressure. There are some stories of people he has helped with this approach.


From what you are saying it seems you are really under a lot of pressure, you should find a way to chill out more. Also weed is good for this.

Yes....the Sunbeam heating pads are great! Came here to say that. I have a king sized one, not for the neck, just a rectangle pad but I use it on my neck often by putting on my pillow when I am in bed. This heating pad actually has levels that feel hot, unlike other brands, and while it has an auto shutoff feature it also has a feature where you can make it run continuously which I love. I had tried many other brands before this and they were terrible....would shut off all the time after what seemed like a short while and they never felt warm, let alone hot. Now that I mention it I should buy another one because my spouse sometimes steals mine when she has pain from cramps and other would be good to get her one of her own and would be nice to have a backup anyway.

This is the one I have....

https://www.amazon.com/Sunbeam-King-Size-MicroPlush-XPressHeat-Controller/dp/B00JA9D914

But they also have a couple for the neck as well...

https://www.amazon.com/Sunbeam-Contouring-Shoulder-Settings-Auto-Off/dp/B0753PSVY7

https://www.amazon.com/Sunbeam-Extra-Large-Micromink-Shoulder-Settings/dp/B00LX5CR0M

The one I have: https://www.amazon.com/gp/aw/d/B01AUQ33K2 I highly recommend! Super durable and inexpensive.

What kinds of procedures have they done?

Oh wow, I didn't know that I'm sorry- you still have a lot of work to do. My hips hurt for a very long time from surgery but I couldn't tell the difference if they felt better or worse. Unfortunately over time they got much much much worse. 6 months is normally the time you should know though so you've got plenty of time with that.

I've gotten 4 surgeries total so yes I can relate to you, friend.

Yeah I totally know what you mean, you didn't lash out :) . Even though you look at me like I could workout, I can't do it for longer than 5 minutes. And yeah the RIC program will tell you don't worry you'll work your way up!! But, it just doesn't work long-term as a solution. At least for me. You'll learn a lot of tools there, but they use a book called Managing Pain Before it Manages You. It is the core of their program and it's all in this book. Take a look at it before you decide anything.

RIC doctors are some of the top docs in the midwest area, if not country. Seriously.

You can get an adjustable cane like this, I would also suggest getting one of these with it.
You could look into your local YMCA for a pool or gym.
If he has insurance he may be able to get doctor ordered physical therapy.
My father (who also has back issues) used to put a sheet of plywood in between his mattress and box springs to give him more support. ymmv.

I'm dealing with a lot of pain for the past 3 months. I've been using a lot of advil, alieve, and oxycodones (past reserves and current low/limited supply). However, I started becoming concerned about side effects in the form of future stomach ulcers, etc due to large doses I need of advil and alieve to help my pain. So I sought out natural remedies. Through youtube searches and google, I came to the conclusion that Wild Lettuce is the answer. 3 weeks ago I purchased the pills linked below. However, despite numerous positive reviews, they do nothing for me. I started with 2 pills - nothing, jumped to 4 pills next day - nothing, jumped to 8 pills next day - nothing, jumped to 10 pills about 3 days later as last attempt - nothing. According to the amazon reviews, the common effective dose is about 2-4 pills. So Wild Lettuce does not work for me (assuming what I bought is the legitimate thing). I found an article yesterday on a trusted website that essentially stated that there is no evidence that Wild Lettuce is effective.

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My wife thinks all the positive reviews for the Wild Lettuce I bought are fake, however, they seem real to me. It may just be my body. Your case may be different.

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Wild lettuce I purchased:

https://www.amazon.com/Wild-Lettuce-Extract-Capsules/dp/B07BYT1NQ1/ref=sr_1_1_sspa?crid=1U6TV6M039YA6&keywords=wild+lettuce+extract&qid=1574611498&sprefix=WILD+LETTUCE+EXT%2Caps%2C128&sr=8-1-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEzQTEySkNKS0ZZVjVHJmVuY3J5cHRlZElkPUEwMTU1NjEwM05KVzFRMUo4RTBHTiZlbmNyeXB0ZWRBZElkPUEwODEwNDg5SzUzSko2MlFYQjJTJndpZGdldE5hbWU9c3BfYXRmJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==

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Article discussing Wild Lettuce and lack of evidence:

https://www.healthline.com/nutrition/wild-lettuce#bottom-line

Get something like this, you will thank me later.

[This] (https://www.amazon.com/Carex-Soft-Grip-Cane-Black/dp/B001AFCWYQ/ref=sr_1_13_s_it?s=hpc&ie=UTF8&qid=1497673800&sr=1-13&keywords=cane&th=1) is the cane I use.

"Oh my gawd I would just curl up in a ball and DIE if I hurt all the time like you!! Anyway, let me tell you about this hike I went on..."

"You can't drink with your medication? Oh it's ok, just have a few, I'd totally be an alcoholic by now HAHH"

"Oh my goodness you poor thing, have you tried [insert naturopathic/homeopathic/other BS here]?"

"You can't really be hurting all the time, have you read this book to get rid of back pain?" (I do not have back pain..)

"Aw you're so boring, you never hang out with us and I miss youuuu"

"It's ok, you'll get better soon, I'm praying for you every day!"

...and many more reasons on why I dread in-person social interaction.

Have you ever read Dr. John Sarno's book Healing Back Pain? Check it out. The reviews are crazy. Howard Stern is a massive fan, this book healed his back pain. http://www.amazon.com/Healing-Back-Pain-Mind-Body-Connection/dp/0446557684/ref=sr_1_1?ie=UTF8&qid=1409669644&sr=8-1&keywords=healing+back+pain