(Part 2) Top products from r/ChronicPain

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.

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
  
  
  

If you go the natural herbs route, check into a book called the "PDR for Herbal Medicines", the most recent edition you can find. It lists all the herbal medications currently on the market, dosage levels, chemical composition, warnings to users, contraindications, etc, etc, etc.

(The first link that I found when I searched for it was at an Amazon site - http://www.amazon.com/PDR-Herbal-Medicines-4th-Edition/dp/1563636786 - but I'm sure other major book chains will have copies available.)

It won't tell you what you should be taking; it will tell you what effects any particular herb you're on has.

Losing weight is usually on my list too. Someone recommended these books to me. Maybe they have them at your library? They are about the emotional aspect of eating, which is my problem right now. My pain gets bad, I go get ice cream.

I was told there's 3 books in the series, but to skip the middle book because it's a diet book, and the psychology books will work for any diet. I hope I looked up the right two books, I just read about them this morning.

The Beck Diet Solution: Train Your Brain to Think Like a Thin Person

The Diet Trap Solution: Train Your Brain to Lose Weight and Keep It Off for Good

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My therapist has a book on techniques for managing chronic pain. Here it is. There's a section on mantras/relaxation techniques and how to condition your body to go into a state of relaxation when you hear a certain sound or phrase. Haven't tried it yet but the theory behind it seems solid.

That made me think of Bad Medicine: Doctors Doing Harm Since Hippocrates, by David Wootton, which is a pretty interesting look at the history of medicine and how, on average, in the past it probably caused more harm than good.

Neuroplasticity: neurons that wire together fire together.
Neurons that continually alert your brain to pain alter the mapping of your brain and more areas become wired for pain.
This unwires other brain functions.. memory, concentration, everything.
This is why it is hard to concentrate when you are in pain and the 'mental fog' therein.

There are some good books on the matter..
The Brain that Changes Itself by Doige
If you do not understand the science or anatomy/physiology of brain stuff, Dr Doidge does a great job explaining everything.

I am reading this one by Dr Doidge as well..

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