Wednesday, February 27, 2008

Open Letter To Those New To The World of Chronic Pain

Dear New Chronic Pain Sufferers,
Welcome to the world of chronic pain, a dark place where you may or may not get a definitive diagnosis or find treatment that helps.

I want you to know, first of all, that you are not alone. There are lots of us out there who have gone before you into this realm, who have been in it for years, and who have done our best to pave the way to make it easier for you. As you may be discovering, we have not made as much headway as we'd like. This is a difficult road, one where we have only just begun to be taken seriously, to have research done, and to have some therapies that work for some of us.

We still have a lot of lousy doctors out there who are either not well-educated, or not compassionate. Most of us have been through several doctors, usually around 7 or 8, before finding one that is willing and able to help us. You may have to do the same thing, and while that is a huge pain in the butt, it is not worth your time to continue seeing someone who treats you poorly, doesn't take you seriously, or doesn't know what the hell s/he is doing. If your doctor is unable to help, and unwilling to learn more about your condition, then find a new one. If that one fails you, move on to the next one. Remember, you are not there to be a good, passive little patient. You have to advocate for yourself, and if the doctor expects you to just suck it up and do what s/he says? S/he does not deserve your time or money.

There's also an immense amount of quackery out there. Look out for doctors who promote snake oil or weird therapies. Especially look out for claims of a "cure"--that's the clearest indicator of bullshit. Guaifenesin, for example, works no better than placebo, yet there's a doctor out there making tons of money off of fibromyalgia patients with his quacky book that claims to cure the condition with guaifenesin. Look out for vitamin pushers; a multivitamin isn't a bad thing to take, but don't throw your money away on one that claims to be designed for your condition. Avoid magnetic products; they are quackery as well. Your best bet is to find a good online forum and communicate with other sufferers. Most veterans can tell you what works and what doesn't, which is very helpful in a realm where hucksters prey upon our desperation to make the pain stop.

Also know that everyone has a different set of symptoms, and different therapies work for some, but not others. It's important to have a lot of tests done, including Vitamin D levels, thyroid panel (full panel, not just TSH), Lupus and Rheumatoid Arthritis screening, and things like that. Rule out everything you can, and treat what you test positive for. Some people find that their pain is caused by celiac disease, and is helped by going gluten free. We all have to go through periods of trial and error to see what works and what doesn't. For example, many people get relief from Ultram, but it does absolutely nothing for me. I get relief from opiate pain medication, but that doesn't work for everyone. It takes a lot of time and effort to find the right diagnoses and therapies. You also will have to advocate for yourself a LOT, asking the doctor to let you try this or that, and if they refuse to listen, time to fire them and find someone who wants to help you.

Your family and friends are probably going to treat you badly over this. They may accuse you of being lazy, tell you that you just need to lose weight (chronic pain afflicts people of all body types), to suck it up, or that you're imagining it. They'll offer tons of unsolicited advice, and probably even get mad at you for not paying $100/month for a random herb that they read about in Reader's Digest. You do not deserve to be treated this way, and you do NOT have to apologize for your pain. You might just have to let go of some people, if they cannot get over your life change. You don't have to yell at them, but feel free to tell them that you are dealing with your condition, and it is between you and your doctor what therapies you try. If they can't handle that, then do your best to ignore them when they are behaving badly.

Finally, don't give up. Your pain is real. There is research showing the biochemical differences between us and normal people, and more going on even now. Therapies are being developed and improved every day. Keep a journal, either online or paper, and make it private. Write about your pain, your experiences, and what works for you. The information may help you or someone else someday. Network online with other people and share your experiences in communities; you will learn valuable stuff this way. Find a source of comfort, be it a spouse, friend, support group, cat, or dog; you need someone to hug you and be hugged by you. Finally, remember that you are not a bad person, and you don't deserve this. It's just a bad thing that happened to you, and, while it seriously sucks, there are more of us out here to help you find your way.

Welcome to chronic pain.



AnnieMcPhee said...

Rio, that's all so true - and I would wish that everyone would rule out *every* possible, measurable physical cause - because so many damn times there is a cause - they just don't even know to look for it. Once it's found, a whole new world opens up. People also do not understand chronic pain - they don't know why you're not "better yet" or aren't you "over that?" People who've known for years. People who push you in your wheelchair. People who help you dress and shower and eat - STILL just sort of "forget" that you're in constant agony now and again.

For what it's worth I wrote my story here -

I may now know your pain, or her pain or his pain, but I know pain. Intimately.

AnnieMcPhee said...

(Er, that is "I may NOT know your pain or her pain or his pain" not "I may now know" Sorry.)

Heather said...

Thank you, Rio. You know how much I love you.

Mercurior said...

i have 2 broken ankles, they healed wrong, 8 visits to 2 different hospitals, as one closed their plastering room.

they healed bad. now every time i walk the broken bone rubs on my tendons every time i walk (it happened when i used to play rugby league i slipped on some mud and cracked the bones). but they are Not bad all the time but i do have a very high pain threshold. my brother has arthitus in his spine and a dodgy disk, and is on pain medication. (plus he has M.E.)

so there are other forms of pain as well. I understand pain, maybe not exactly the same kind. but i know what it feels like. (when you want to scream to let out the pain)