(Part 3) Top products from r/ChronicPain

The weight loss can be done without any exercise. Or starvation. That 50lbs is really putting a huge strain on an already strained spine.

If you have access to a warm pool, that is a great way to get some gentle movement and stretching, and it feels good. Obviously you should stay away from any impact activities.

I promise you - with a healthy diet you can lose those 50lbs without doing a single minute of exercise.

I strongly recommend you strengthen your core. You have to. Your abdominal and back muscles have become very, very weak.

I used this book at home. I just plop a yoga mat on the ground. Its helped a LOT. It will take a lot of patience and of course you should modify the exercises to start off very gently and do nothing that causes a major flare up. A mild flare up may be unavoidable. The first three months for me were awful - but, I didn't need to push as hard as I did.

Its very important that if you have not already, really learn how the core muscles function together to support and stabilize your spine. This book is by far the best with explanations and plenty of exercises you can do on your own. Quality is far more important than quantity. I downloaded it to my ipad and do them 3x a week.

http://www.amazon.co.uk/Pilates-Anatomy-Rael-Isacowitz/dp/0736083863/ref=sr_1_1?ie=UTF8&qid=1452832285&sr=8-1&keywords=pilates+anatomy

The illustrations are perfect and the first few chapters focus on teaching you what muscles get affected, how important core strength and posture is, when and how to breath during the exercises, etc. Most books just throw up a 2 page "strong core is important" blurb then put up exercises but without giving you any idea of which muscles you should be focusing on, or how to do it properly.

I know you are suffering, and I truly hope it gets better, but you will feel better if you start doing these home exercises a few times a week and overhaul your diet. For me, it was like I had some semblance of control. And as you get stronger, you'll be pleasantly surprised with how much stronger your core can get.

(Note: My spinal vertebrae and nerves are damaged due to tumors and radiation, and I cannot support my own healthy body weight when I stand up without experiencing instant, agonizing levels of pain. These are floor exercises (I can't do the twisting ones) so its certainly do-able. Also, if you don't already, read up on gently stretching that would be helpful for your particular condition.)

Best of luck.

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.

Acceptance is a huge part of dealing with a chronic condition. "Fighting" it is often counter-productive because it leads to emotional turmoil. In Buddhism we learn to explore and and accept the pain.

Also you can develop happiness by focusing on gratitude, just like you stated. A book we're using in group therapy is this and gratitude is one of the practices, along with acceptance, compassion, forgiveness and meaning.

Also if you're familiar with "The Secret" then the same person wrote a book on practicing gratitude called "The Magic". But there are lot of books on gratitude and how it can transform your life.

Great series of books. You do not need to read them in order; I read book 4 first, and it spoils nothing.

Supposedly, Amazon Prime wants to do a miniseries of this, or at least the first book, to the level of quality of Game of Thrones. I'll... believe it when I see it.

Anyway here are Amazon/Audible links! (Or hit up your local library, etc.)

1. Consider Phlebas paperback / Audible
   
   
2. The Player of Games paperback / Audible
   
   
3. Use of Weapons paperback / Audible
   
   
4. The State of the Art (collection of short stories) paperback / Audible
   
   
5. Excession (I read this one first, it's great) paperback / Audible
   
   
6. Inversions (sort-of a Culture book) paperback / Audible
   
   
7. Look to Windward paperback / Audible
   
   
8. Matter paperback / Audible
   
   
9. Surface Detail paperback / Audible
   
   
10. The Hydrogen Sonata (my favorite - Vyr Cossont is my hero) paperback / Audible
    
    I really like this stuff as space opera type stuff. It's usually not "hard" sci-fi like Asimov or even Philip K. Dick or anything, but I rather hope humanity heads in the direction of the Federation, and then ultimately to The Culture.
    
    Fun fact!! Elon Musk named the autonomous drone barge ships (the ones that SpaceX rockets land on) after some Culture ships. Namely the Of Course I Still Love You, and the Just Read The Instructions. I also rather like the full name of the ship Mistake Not… (Don't Google it! It's a spoiler!!!)

If you think your problems might be hypermobility-related, perhaps you could explore (if you haven't already):

http://hypermobility.org
(I believe HMS is considered by some experts to be equivalent to one form of EDS)
Their forum has some useful entries on books, papers, and treatments if you browse around.

http://www.amazon.co.uk/gp/aw/d/1848190689?pc_redir=1409252128&robot_redir=1

http://www.amazon.co.uk/gp/aw/d/0750653906?pc_redir=1410746322&robot_redir=1
(For practitioners or keen patients)

I can't guarantee these resources will be applicable to you, but if hypermobility is involved then these are often-cited resources.

I understand that physio exercises working on core and individual joint stability are regarded as very important, in addition to gentle exercise at whatever level you can manage, but ideally led by a physio who is familiar with hypermobility. (It's very easy to cheat on the exercises if you are bendy, which then gives the mistaken impression that they don't help.). Rosemary Keer has some interesting overview papers in this area, which can be found with google.

[I am posting the links above as I have found them useful, not because I have associations with the authors or organisations.]

I really feel for you. It's true that you're being robbed. At 15, you're dealing with something even full grown adults struggle to reconcile with (myself included).

Might I offer a few suggestions? You have a lot going on medically and I'm no expert, but I do have experience with chronic headaches (about a year now), among other things.

First of all, (assuming you're not emancipated), you're a minor. Which means in order to get any medical help, you need your parents' permission. Sit down and have a conversation with them (or another adult you trust) about what you're going through. They may be able to see that you're in pain, but not understand because they can't imagine what it's like. The pressure you feel, is the sensation similar to wearing a tight headband or headphones, but amplified several thousand times? Or is it like leaning your head against the car window during a nap, and waking up to find the position you're in is suddenly uncomfortable? Go through every symptom in as much detail as possible, using whatever situations or sensations to express how you feel most accurately. Tell them how you feel about your doctors, and that you need to find a new doctor who understands. Your parents should be your strongest advocates, and provide the support you need.

Read Spoon Theory by Christine Miserandino. It was written about lupus, but I think it has wider applications, especially when you have a condition that changes how you live your life day-to-day. If it seems applicable to you, use it as another way to explain what you're going through.

Keep a medical diary. Start today, write in it nightly. Use Allie Brosh's pain scale to rate your symptoms. Everything from severity of your headache, to blurriness, dizziness, eye pain, ringing ears, fatigue, even your appetite, or how social you feel, or whether you're experiencing high levels of stress or anxiety. When something changes, whether it be your medications, your diet, or level of exercise, make note--you may be surprised to look back and find you felt better after consciously drinking more water for a week. You never know. And bring your diary to doctor's appointments! It's a great reference tool for them too. (Side note--Allie Brosh is good for a lot of laughs, check out the rest of her stuff).

The Chronic Pain Solution has a ton of information that might help you, in an easy to digest format. Your local library may have a copy or, as you can see on Amazon, used copies come pretty cheap. Dr. Dillard is an advocate for using multiple therapies, such as medication, surgical procedures, acupuncture, therapy, and simply, better posture. He has many good tips and may give you a few new ideas.

I know how frustrating and demoralizing and frightening this must be for you. All I can say is, hang in there. You're not alone. There's a whole big world of us pain sufferers who understand.

Best wishes to you! A lot of the details are foggy to me now, but I bought the book https://www.amazon.com/Pain-Assessment-Pharmacologic-Management-Pasero/dp/0323056962
Which is designed for doctors / nurses but was easy enough to read using Google. It helped me discuss a lot with my doctor. It doesn't necessarily match up with the current FDA / CDC regulations (which also says a lot) but helps to understand the biology and psychology. Might be worth picking up.

hello,

going through the same thing! i am also 25, herniated my L5-S1 disc about 4 months ago. initially, i thought it wasn't anything serious as the pain was manageable. i did everything i shouldn't have been doing right after herniating my disc; the wrong stretches, not resting and sitting. at that stage, the pain was about 5/10. after 2 weeks, it went to a 10/10. went to an acupuncturist (didn't do anything) and massage therapist (felt good but i didn't experience any healing benefits).

started to self treat my self using the internet and books as a source. did stretches, mckenzie exercises and massages. didn't go too well.

i then saw an orthopaedic surgeon who gave me steroids and nerve meds (didn't do anything) and told me not to do any form of exercise as i needed to rest to start the healing process. he told me, if i needed to, to walk around the house for a half a minute or so. when i saw him again, i was improving slightly, and he got me to get an epidural shot. this did nothing. at this point, he told me i could wait it out and see if i would get better or opt for an operation. i decided to wait and go see a physical therapist.

the physical therapist has been a HUGE help. gave me exercises to do every 30 minutes that spared my spine and ensured there was minimal compressive loads on my back. i also started to take anti inflammatories 2 weeks ago (i'm not keen with meds and they affect my stomach) and will only be taking them for the 2 weeks. they have helped quite a lot with the pain.

overall, i have improved quite a bit from 4 months ago. the first 2 months i wasn't able to see anyone for my back as i was travelling in a rural part of a country where no one spoke english. so technically, i've been at this for 2 months.

my advice, after having done a lot of research on the internet and reading a lot of books due to not being able to do anything else;

• rest, rest, rest. when you're able to move a bit more without being in too much pain, move as much as you can! even if it's for a few seconds.
  
• you don't need to be stretching out your back. your back needs to be stiff to ensure stability.
  
• be careful with stretching. it might feel good for the moment, but it could actually make your situation worse. most of the time, the pain is from the nerves, stretching out your muscles won't fix that. you need to deal with the root cause, which is the disc impinging on the nerve.
  
• do core exercises that utilise your whole body. don't focus on just one muscle.
  
• learn about correct posture and neutral spine
  
• no sitting position is good for your spine. minimize sitting.
  
• find a good sports physical therapist (i have no experience with chiro's)
  
  take what i've said with a grain of salt, the above are my experiences with this debilitating injury. and do your own research! you'll have the time to do so, since you're not mobile ;)
  
  lastly, i think this book is very helpful. check it out:
  http://www.amazon.com/Low-Back-Disorders-Second-Edition/dp/0736066926
  
  
  

I have neck problems and need a pillow of a specific thickness or I wake up with really bad pain. The following adjustable pillow is what I recently purchased that is working great. Took a few days to get the stuffing right but it has been great. I just save the stuffing in the bag it comes packed in.

https://www.amazon.com/gp/product/B07WDN6YQX

I really love this author's blog and articles so maybe her book is also good.

The first one I read was recommended by one of my old physical therapists. You can find it here:

https://www.amazon.com/Brains-Way-Healing-Discoveries-Neuroplasticity/dp/014312837X/ref=pd_sim_14_1?_encoding=UTF8&psc=1&refRID=AZB55NFKREYDC1KQXW79

From there, I did some research, and found that one of the authors from the above book also has a workbook. If I had to chose between one or the other, I would have only purchased the workbook. You can find the workbook here:

https://www.amazon.com/Neuroplastic-Transformation-Workbook-Michael-Moskowitz/dp/0615814654/ref=sr_1_1?ie=UTF8&qid=1510251175&sr=8-1&keywords=your+brain+on+pain

It seriously changed my life. It looks like the price has gone up a significant amount since I purchased it a year or so ago. Maybe you can find it for cheaper? I think it was around $45 when I bought it which seemed like a lot... until I thought of the thousands of dollars I had paid for all my medical crap.

Link to amazon https://smile.amazon.co.uk/Vitamin-Deficiency-Clinical-Practice-colour/dp/109678291X

Walking is supposed to be good. Also search "Williams Flexion". It may not be exercize, but it is stretching, and it seems to reduce my back pain.

Lights OUt might help with the weight thing.

There's a very good book about autoimmunity and vaccines that is fairly easy to read: https://www.amazon.com/Vaccines-Autoimmunity-Yehuda-Shoenfeld/dp/1118663438 (also downloadable from ebook sites)

> In light of the discovery of autoimmune/inflammatory syndrome induced by adjuvants, or ASIA, Vaccines and Autoimmunity explores the role of adjuvants – specifically aluminum – in different vaccines and how they can induce diverse autoimmune clinical manifestations in genetically prone individuals.

It's a shame that vaccines have to be so vigorously defended at every turn, and you're being interrogated like some kind of criminal in this thread. They cause a whole bunch of issues that are never reported or linked to jabs.

If you are truly wanting a medical opinion, then here it is. Just because a MRI showed herniations, stenosis, sciatica, scoliosis and degenerative disc disease (DDD) it doesn't mean much unless your symptoms are consistent with the findings. If you MRI 100 people who have no pain, you will find the same exact findings in the majority of these people. So why do you hurt? I can't tell you that. No one can obviously. But if you live your life based on these diagnoses then you will never get better. If you are truly wanting to get better then I would suggest you look at pain science education. Some ideas are:
http://www.noigroup.com/en/Home

http://www.amazon.com/Why-Do-Hurt-Adriaan-Louw/dp/0985718625/ref=sr_1_1?ie=UTF8&qid=1416717090&sr=8-1&keywords=why+do+i+hurt

http://www.amazon.com/Therapeutic-Neuroscience-Education-Adriaan-Louw/dp/0985718641/ref=sr_1_2?ie=UTF8&qid=1416717090&sr=8-2&keywords=why+do+i+hurt

No one says you don't have pain but pain science education gives a different perspective on why you do and how to cope with it. Hope this helps

Hi there friend! I’m just like you, a recovering addict and a pain patient. I have both diseases and I chose to do the best I can with each one disease every morning when I wake up. I’ve worked very hard at it and managed to pull together 14 years of clean/sobriety time. Please, feel free to use me as a resource anytime!

This is how I feel about this whole situation. First off, it’s is estimated that about 10% of he population has, had or will have a problem with substance abuse (although this estimation varies by reporting body). I just happen to be part of that ten percent. I don’t make excuses for my addiction. It just is. There is ample evidence that it is a genetic disease. No one in my family let me know that we had family members who were alcoholics. Again, it just is.

I became addicted to the Oxy prescribed by one doctor in the early 2000’s. He gave me lots. More pain? Here’s more! I saw specialists who knew exactly what was being prescribed and at what doses. No one could figure out why I had turned into a raging bitch. No one could figure out how to help me with my increasing pain levels (which had become daily withdrawal pain). No one could figure out why I kept trying to kill myself. They were about to put me in a nursing home. I was 29. My last attempt to take my life resulted in a psych consult with a psychiatrist who also happened to be an addictionologist. She figured it out. I went to rehab where I learned that I’m not special. I’m just like any other addict. It doesn’t matter what drug is used. We will all die of our addiction if we don’t get help. I stay clean through 12 steps. I am accountable for my life, my disease and my choices through my step work. It is work! But it DOES work.

My addiction is my disease. I don’t like being used as an example by doctors and the medical community because they have, for fourteen years, refused every attempt I’ve made to help them understand what life like this is like. The same doctors who refuse to give you your pills because of addicts like me won’t listen to people like me when we want to help them understand how to identify and help others like us. How fucked up is that?

I also feel like the medical community has done a huge disservice to the pain community by not having anything in place to help us when they took the pills away. I’ve been lucky. Super lucky. I’ve been a patient at the Shirley Ryan Ability Lab. They have an intensive outpatient chronic pain program that helps! It doesn’t take the pain away, but it brings the level down and they give you tools to keep it down and handle it when it goes back up. There aren’t many of these programs, but there should be! Below is a link to the text they base their program on. I can’t recommend it enough. Stupid title, great contents!

https://www.amazon.com/Managing-Pain-Before-Manages-Fourth/dp/1462522777/ref=mp_s_a_1_1?adgrpid=56348462112&gclid=EAIaIQobChMIkJSett-84wIViMDACh1pgQ9ZEAAYASAAEgKKk_D_BwE&hvadid=274707565562&hvdev=m&hvlocphy=1016367&hvnetw=g&hvpos=1t1&hvqmt=e&hvrand=12323459366420263183&hvtargid=kwd-307477151209&hydadcr=22159_10176612&keywords=manage+pain+before+it+manages+you&qid=1563393716&s=gateway&sr=8-1

It turns out that us clean/sober pain patients are in a unique position to help the rest of the pain population during this crazy time. I very rarely use them (yes, there is a vehicle to use them safely within the 12-step programs. It’s hard as hell. I don’t recommend it. I will report that I am currently taking a small dose after the birth of my second child three months ago). Most of the time I don’t take anything. I will help answer any questions you have about how I do this.

My diagnoses include fibro, chronic migraines, TMJ pain, CRPS and various GI issues. I struggle with both allodynia and hyperalgesia. Like other chronic pain patients, I have also been rewarded the diagnosis of Central Sensitization Syndrome. I’m a SAHM which is both great and hard as hell.

As far as my feelings toward the opioid crackdown in general? I guess I have a few. Each patient is unique and the decision for treatment should be made independently of the next patient. What happened to me should have no bearing on what happens to the next patient. I am unique and you are unique. However, I think the entire system of how we treat pain in the US is fundamentally wrong. Every one of you should be offered the opportunity to do the pain program I have so that the use of pain medication can be decreased. But that won’t happen because it costs a lot of money. And that just super sucks. I think that every doctor who treats people in chronic pain should be an addictionologist as well. Two hours of class time in med school is not enough for the shitstorm of a disease like addiction. Most doctors (like the rest of the world) still see us addicts as the scourge of the earth, instead of seeing us as people who are sick. That needs to change too.
Ultimately, I see what happened to me as a huge failure of the medical community (although I also take responsibility for it as well). What is happening now with the crackdown is also a failure.