Chronic Pain Isn't All In The Brain

[UglyGreed]

One in five of us has been experiencing chronic pain over the past three months, or longer.

Chronic pain won’t kill us; it just makes our lives miserable. More miserable, research suggests, than for example having asthma or diabetes. So if chronic pain is a common, dismal health state, why don’t we talk more about it? Perhaps because in many cases we don’t know why we get it.

As we often don’t find a reason for this invisible conundrum, we may tend to believe that it must be all in our brains, maybe even our personality. And if you have pain you may become desperate to find a way to get your brain to drop this unnecessary folly.

So here we are, in the 21st century and every fifth person is suffering from this health problem, which we don’t understand. A health problem, which can be so debilitating that those experiencing it often stop working, stop socializing and stop doing things they like doing, or should be doing.


http://www.science20.com/the_conversation/chronic_pain_isnt_all_in_the_brain-149942

[DeadLetterOffice]

1. Why don't we talk about it more?

Personally, several reasons:
(1) I often feel like others think it's my own fault -- like if I tried harder I'd hurt less. Or if I ate the right things or took the right meds or did the right kind of yoga. We get blamed for our pain, and when you already hurt, that's just one more thing to deal with.
(2) People really don't want to listen. Other chronic pain folks do, but that other 80% usually gets uncomfortable cuz they don't know what to say, and they change the subject so fast your neck hurts from the whiplash.
(3) Our 'suck it up and cope' culture. When 'being brave' and 'being strong' is the goal -- how do you talk about being in pain, being scared, being alone, being depressed, being weak?
(4) Doctors can't fix chronic pain. They just can't. So we become their 'failure.,' We are incurable. They get to where they don't really want to see us, or hear our stories, because they can't make us feel better and that's what they're trained to do.

[historylovr]

2. ^This.^

[Kalidurga]

4. Everything you said

Plus it's invisible. I have had chronic fatigue for about 7 years now and it's caused me to not be able to work, but according to the government I am not actually disabled. I can't really do even the bare minimum to keep up with my daily tasks. I eat weird things sometimes because even taking 10 minutes to put together a meal is too much. I have a hard time reading on some days. I fall asleep at my computer frequently on those days.

[DeadLetterOffice]

17. "But you don't look sick!"

Ugh. Hate that one.

Have you read The Spoon Theory by Christine Miserandino? It really helped my spouse to understand what my days feel like to me.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

A brief excerpt:

How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

... I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

[Kalidurga]

18. That's perfect

One disease that might be worse as far as having to plan things and I don't deal with infections. But, everything else I do have to deal with and that "you don't look sick". A lot of people think I am just being lazy. Half the time I feel that way after a lifetime of taking care of children and having a full time job and running all over town with my kids to give them some good memories growing up. Now I feel like I have accomplished something if I walk 4 blocks to the store to get food.

[Lunacee_2013]

20. That sounds like a book I need to get.

My "spoons" would be mostly energy. I've had type 1 diabetes for over 25 years now and it has completely taken away my strength. So I really do have to plan out my days. Everything from walking to cooking to taking a shower. It's a real pain in the ass. Plus, I have a ton of nerve damage and migraines and an unrelated heart condition that makes my pulse sky-rocket, so there are plenty of days were being productive is just not possible.

I hate the "you don't look sick" crap, too. I usually look ok, if maybe a little thin, but I don't always feel ok.

[liberal_at_heart]

22. Yes, Chronic Fatigue is another one that we don't know anything about, doctors can't fix, and

others just look at us like we're lazy. It is hard. I just spent the past 18 hours in bed. I am feeling a little better now. I took some iron and potassium last night and this morning because I have had a problem with deficiencies in the past although I don't know if that is what triggered this episode or not. I am just hoping I can make it through the rest of my day. I have to take my husband to the doctor and my son to shop for Christmas presents.

[Prophet 451]

5. ^^ what he said.

Especially point 1.

[airplaneman]

6. oh please let me add a few more.

(5) Your employer will view you as weak, unreliable, cannot be counted on - so they will let you go before you are no longer able to work. You really endanger you job by letting on that you are in pain.
(6) Everyone who knows you take pain killers thinks you are addicted. Actually if you took a drug test you would probably fail because codeine will give a positive hit. No one will believe you actually take painkillers for pain and are not an addict.
(7) Doctors worry about prescribing pain killers as it brings attention to them, couple that with the fear that you are just going to get addicted means its hard to ask or get more pain killers if you really need them.
-Airplane

[DeadLetterOffice]

15. Excellent additions

I can't tolerate opioids or narcotics -- ultram, codeine, hydrocodone, etc. -- they all make me horribly sick, so I have managed to avoid 6 & 7, but I know other people who have very much shared your experiences on that front.

I had to give up on work for now, & was most of the way to my PhD when I filed for indefinite medical leave from school. I can't even imagine trying to work like this, and am constantly awed by what other chronic pain folks go through to keep their jobs. I don't know how they do it.

DLO

[UglyGreed]

7. Wow what a great post!!!

you summed up my life and I'm sure the lives of many others who have had the bad luck of any chronic incurable health issue that does not kill but slowly drains every part of your life.

[DeadLetterOffice]

19. Thank you kindly.

I wish I didn't know this shit first hand tho, lol. Ah well -- if I can't be a shining example at least I can be a glaring warning.

[daredtowork]

3. Interesting Article!

One of my big complaints about chronic pain is how the fragmented medical records system doesn't automatically paint a "whole" picture for the doctor (or for State bureaucracies - Dept. of Rehab, SSI, etc.) when the causes of pain are over-determined. This really draws out patient treatment over long periods (while they may be struggling on welfare the whole time) because the doctor is treating only one symptom at a time - taking breaks for when the patient has the flu or something - and they may have started on a long runway in the first place because for poor people they prefer to focus on "lifestyle" issues like diet and exercise first.

In my case I was in terrible pain and could not walk for a block without sitting down for years because of arteriosclerosis/claudication (from a rare genetic condition), peripheral neuropathy, chronic fatigue related to sleep apnea, essential tremor, arthritis in my hips and back - and a host of minor problems spawned by those conditions like plantar fasciitis, gait problems, postural problems. And that's just my immediate mobility-related problems! I knew I was in a lot of pain, but I couldn't walk.

But because I hadn't been covered by medical insurance for years, nothing showed this. So I had to suffer through the lifestyle speeches. Because I already knew about the genetic disorder, I minimized that in order to try to get the "one symptom only" doctor to diagnose the other problems that I could feel were there. During this entire time I got no pain relief because the genetic disorder prevents me from taking aspirin, I had zero income from tylenol, and I couldn't get the doctor to understand how much pain I was in. I couldn't even get him to prescribe me a tylenol-related pain reliever - which is all I wanted. For years!!! So I remained practically immobile, dragging myself from place to place.

Meanwhile, when I went to the medical clinic's psychiatrist (because claim's of fatigue must mean "depression" first, not an actual medical problem like sleep apnea), I had to fend off suggestions of "somatic" symptoms. All these doctors default to "somatic" symptoms if they don't see evidence of your diagnosed disorder yet, and if you are poor, you are not given thorough enough treatment for anyone to diagnose you! It was not until the ACA kicked in (and my eyes actually started bleeding from my genetic disorder that was going untreated), that I started to be referred to specialists that I needed.

As it turned out, the ACA gave me access to treatment - including pain relief - that actually improved my condition. But that creates another problem/frustration for me: there is no back-filling my medical record with years of suffering/symptoms doctors didn't bother to document because they thought they were dealing with just lifestyle problems of the poor, and they did not think poor people could be believe where high levels and multiple-source pain was concerned. I want that documented!!!

Another thing doctors need to work out (and I know this is why you posted this article) is how to prescribe pain relievers. Doctors keep cracking down on "addictive" pain relievers because they want to protect patients from abusing them or possibly using them to commit suicide. But then why is a patient even hiring a doctor in the first place? A patient wants to be treated/cured of their suffering!!!! A patient wants their disability to be alleviated so they can get back to work!!!! By denying pain relievers, doctors leave patients disabled in a world where the GOP is rapidly withdrawing aid and support for people who can't work. This is an impossible trap.

I was left suffering in incredible poverty for years - dragging myself from place to place because there is no subsidized public transportation for people on welfare in the Oakland area (and yet too poor to get my condition well defined enough to get fast-tracked for SSI) - because of the medical establishment's asinine views on pain.

So I hear ya'.

[UglyGreed]

8. You are an amazing person

and a hero in my eyes. You have endured so much yet still carry on and express your feelings and struggles in such a fine manner. I am so glad the ACA has helped you but IMO it is not enough and we must do more. I wish someone here would see your posts and send some writing assignments or something your way since I feel you could help many people cope with their own struggles.

[daredtowork]

11. you're so kind! :)

I wish someone would see what I have to say on welfare just because there are so few "direct testimonials" on that topic. Also, Oakland is hotspot of civil unrest and "police issues" right now - and I know one of the reasons why! But there are no good ways to get the real problems communicated to the people who should be caring about them. Honestly the politicians are probably more interested in covering them up than doing something about them.

But the chronic pain issue is another thing I repeatedly come back to because it kept me in the system a lot longer than I needed to be in it: and I didn't even need narcotic/opiate pain relievers! I take anti-epileptic medications, and they work for me.

[UglyGreed]

12. I'm just telling you the truth

your talent is being wasted and that is shame. Keep on posting or perhaps start a blog if you are able. We need people like you to speak up.

[daredtowork]

14. I realize that. T_T

I often used the term "benched" when describing myself because my education and skills hardly went away at the time I was more disabled. Trying hard to reconnect with the mainstream world now, though. DU has become sort of a venting place/stress relief while I struggle to do that. I will probably disappear suddenly once I finally "get a job" and my life fills up with the things normal people do.

[MoonRiver]

9. I'm another 5th person.

In my case they know what it is, a slipped, herniated disc and wide spread arthritis throughout my spine. I have been prescribed Ultram, which is pretty effective and lets me function during the day, but I need to be fixed. I recently met with a spine surgeon who gave me the grim news that the only long term solution to my pain is fusion spine surgery, with a 3 to 6 month recovery! Yikes! So I'm diligently trying back strengthening exercises to try and ward off the seemingly inevitable.

[AzSweet]

10. And the "pain mgmnt" clinics...

..at least the ones I have been to here in AZ, are quite plainly a racket. Easy money. You can't turn down any treatment they decide you "need" (even though you have tried it already, and it just made the pain worse)...if you do, you are "violating" your agreement. Just as long as those billings are kept up...that's all they care about.

[Horse with no Name]

13. Fortunately, my issues with chronic pain are not at all what I am reading that are being

experienced in the above.

I was taking a lot of OTC pain killers and Tramadol (allergic to the rest).

This was every single day.

My long-term doctor retired and I was afraid that it was going to be a very bad thing. However, I have to say that I have been pleasantly surprised by the diligence of my new doctor. I haven't had to "prove" anything to him. He hasn't thrown me into the Pain Management scam. He has actually uncovered a couple of issues that I have been dealing with for years and now I am actually getting them treated and hoping that my the management of those conditions will go a long way in treating the reason for the chronic pain.

That being said, for those that do have chronic pain symptoms and have not been through a lot of medications yet (the issue of tolerance), there is a relatively new medication out there that has been successful for me. It is called BuTrans. It is a weekly patch. There a coupons for the copays available. I have the Tramadol for breakthrough pain, but have actually been able to only take Motrin and have been as relatively pain free that someone of my age should expect.

Anyway, it is something to ask the doctor about if he is willing to prescribe it.

[NutmegYankee]

16. Until people experience it, they don't understand.

Having blown two cervical disks certainly changed my opinions.

[Blue_Tires]

21. ttt