Article on Managing Chronic Pain by Karen Lee Richards

How I Manage My Chronic Pain, by Patient Expert Karen Lee Richards ProHealth.com by Karen Lee Richards July 14, 2010 Karen Lee Richards is Lead Expert specializing in Fibromyalgia and ME/CFS, for HealthCentral's ChronicPainConnection.com. She is a co-founder of the National Fibromyalgia Association, a former Executive Editor of the NFA's FibromyalgiaAWARE magazine, and a long-time contributing writer for ProHealth.com. ____________________ “Over the years, I have gradually found a number of things that have helped improve many of my symptoms. The key is, I don't stop trying.” -Karen Lee Richards I am often asked, “What is the best treatment for fibromyalgia?” or “What is the best pain medication?” I wish there was an easy answer. The truth is, we are all very different, particularly when it comes to medications and alternative treatments. What works very well for me may not work at all for you – or may even cause adverse reactions. Each of us has to embark on our own personal journey to discover what works best for us. One thing I can tell you is that I've never talked with anyone who has successfully managed fibromyalgia or any other chronic pain condition just by taking medication. It pretty much always takes a combination of medication, complementary therapies and lifestyle adjustments. Even though we each have to find our own individualized treatment plan, there is value in learning what has worked for someone else because it just might work for you, too. Generally speaking, treatments that are considered to be effective will usually work for about 30% to 40% of the people who have that particular condition. I know firsthand how frustrating it is to try one treatment after another and nothing seems to work. But don't give up. Eventually you will begin to find things that will help. In the end, it's worth going through some trial and error to find the treatment combination that works best for you. What Works for Me I have lived with chronic pain from fibromyalgia and ME/CFS for more than 20 years. Over those years, I have gradually found a number of things that have helped improve many of my symptoms. The key is, I don't stop trying. In fact, in just the last few months I've discovered two new weapons to add to my treatment arsenal. Following are the medications, therapies and lifestyle changes that have made a difference for me. 1.  Medication For the first seven years, I lived with ever-increasing pain while doctors told me it was stress and I was “just getting older.” During that period of time, I took massive doses of ibuprofen, which we now know to be very dangerous. Once I was finally diagnosed with fibromyalgia, my doctor suggested I try tramadol. That turned out to be a huge blessing for me. For the first time in years, my pain levels were down enough that I could function fairly well most of the time - and I even had some periods of time that were pain free! Since that time, three new medications have been approved for the treatment of fibromyalgia, but I have continued to take the tramadol. My philosophy has been, “If it ain't broke, don't fix it.” Tramadol still works well for me and I see no reason to take a chance on something new that may not work as well and may have unpleasant side effects. For the past couple of years, my doctor has also been giving me a prescription of Lortab® to have on hand for breakthrough pain. I generally only take it once or twice a month, when my pain level is up and I have to go somewhere or have a project due. 2.  Complementary Therapies A wide range of complementary therapies may help improve pain and other symptoms of fibromyalgia and ME/CFS. I've heard from people who have found things like massage therapy, yoga, biofeedback, hypnosis, and even bee-sting therapy to be helpful. For me, three complementary treatments have been the most effective: Myofascial Release Therapy – I learned about MRT about 12 years ago. It is similar to massage therapy but much more gentle. Basically, the therapist gently manipulates and loosens your body's constricted fascia, which helps release muscle spasms and ease pain. When I first started MRT, I was walking with a cane. Two months later, I laid my cane down and haven't picked it up since. MRT did a lot to reduce my pain and help my body move and function better. You can read more about MRT here:  “Myofascial Release Therapy” Acupuncture – Acupuncture came into my life about eight years ago when my MRT therapist decided to go back to school to study it. While acupuncture is certainly beneficial for pain, the two areas where I noticed the greatest differences were irritable bowel syndrome and sleep. Except for an occasional flare, my IBS is pretty much under control. Prior to acupuncture, I could never sleep more than an hour and a half to two hours at a time without medication. After starting acupuncture, I could usually sleep for one four-hour stretch, followed by two or three two-hour segments without medication. Here is more information on acupuncture: “Acupuncture” Supplements – I've only been taking supplements on a regular basis for about a year. My most recent find in the supplement world is CoQ10. I've been amazed at how much my energy level has increased since starting it. I take three 100 mg softgels of Ubiquinol (the most usable form of CoQ10) each day. Other supplements I've found helpful for FM and ME/CFS symptoms are vitamin D3 for pain, vitamin B-12 for energy, and acidophilus pearls for digestive health. I'm still experimenting with one new supplement at a time to see what else might prove to be beneficial.   3.  Move/Stretch One of the most important things I've learned is that I need to move as much as possible. Sitting or lying in one position for too long will cause my muscles to stiffen and significantly increase my pain. I try to do a few simple stretches several times a day. If I'm having a particularly bad day, just standing up and doing a few full-body stretches can make a big difference. Exercise can be a tricky thing for FM and ME/CFS patients – especially for those like me who have both illnesses. Fibromyalgia patients are taught that exercise is an essential component of any treatment program, but overexertion can send ME/CFS patients into a tailspin. It's hard to know what you should do. For me, short walks - even just walking through my house - and frequent stretches with plenty of rest breaks in between seems to work best. 4.  Breathe Breathing may sound like an odd “treatment” but I've found that most of us who have FM and/or ME/CFS tend to hold our breath a lot without even realizing it.  I'm not sure why. Perhaps because it's somewhat natural to hold your breath when you feel pain. The problem is, shallow breathing and holding your breath will actually cause your body to be more tense and increase your pain. As strange as it may sound, I try to remind myself to breathe several times a day. I've found that taking several good, deep breaths can help relax me and ease the pain a little. You can learn more about how to breathe properly here: “The Importance of Breathing Properly” 5.  Distraction I learned a long time ago that the more I think about and focus on my pain, the worse it seems to get. So I try to always keep my mind occupied with something else. Following are some of my favorite distractions: Help Others – The more I focus on trying to help others with their problems, the less I think about my own. I spend quite a bit of time each day answering questions and writing articles trying to help others find ways to better cope with their health problems. ProHealth's Message Board is a good place to connect with, help and encourage others: http://www.prohealth.com/blog/index.cfm Laugh – The old saying, “Laughter is the best medicine” has a lot of truth to it. Research has shown that laughter has positive physiological effects on us like reducing pain, stimulating the immune system and improving brain function. Because of that, I regularly record a variety of comedy shows and movies so I always have something funny to watch if I'm having a rough day. Mental Activities – Since I enjoy working with words, I spend some of my free time each day doing crossword puzzles or playing electronic games like Scrabble. Not only do they keep my mind occupied, but I feel like they help improve my cognitive functioning and keep fibro fog at bay. 6.  Sleepwear Three months ago I would never have dreamed that I would be listing sleepwear as a method for coping with chronic pain. But then Goodnighties came into my life. I was invited to become a “Jammie Tester” for a new product line of what was called “recovery sleepwear.” The fabric is infused with negative ions, which are known to have many positive effects like increasing serotonin and melatonin levels, increasing blood flow and oxygen to the brain, and helping us reach REM sleep more quickly. Much to my surprise, I find that since I began wearing Goodnighties to bed every night, I fall asleep more quickly, sleep for five to six hour stretches and awake feeling refreshed – something I hadn't experienced for more than 20 years. On top of sleeping better, the hip and low-back pain I have been plagued with for years is gone. Needless to say, this new sleepwear has become a key component of my treatment protocol. You can read my full review of Goodnighties here: “Goodnighties Recovery Sleepwear: A Product Review” In Summary It's taken me 20 years to put together what I feel is a pretty effective treatment plan for myself. No, I'm not “cured,” and I still have some bad days. But I have a good life and many more good days than bad, which is a drastic improvement. I hope at least a few of the things that have helped me will help you as well. ___ Note: This information has not been evaluated by the FDA. It is general and anecdotal, and is not intended to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

A Very Helpful Letter to Share with Family, Co-workers & Friends

A Letter to "Normals" from a Person With Chronic Pain
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand:  These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and  exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. 


So, if you're talking to me and I sound happy, it means I'm happy. that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. 


Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. 


With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting  "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" 


If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time.  Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don't you know that I would?  


I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. 


You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't.  It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I.  In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. 


It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. 


Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.


Last edited by TracyLynne (2008-03-05 19:36:47)


"I did not write this, but have found it very helpful. Please pass it around, it really helps family, friends and co workers to get it!"


Wendy

I Am Not My Chronic Pain: Reclaiming a Fulfilling, Creative Life with Chronic Pain

Welcome,  fellow chronic pain survivors!


It is 3 am in the morning, and my nasty pain gremlin awakes me as it does as this time just about every night. This monster is a master at its craft, its voice is vicious and persistent- so here I sit, writing this blog. Why this chronic pain blog? 


Chronic pain personally impacts my life everyday, and this"challenge" has hit me like a proverbial  2 x 4. Chronic pain has shaken my world to the core in so many ways. I hope anyone who reads this blog will also share their stories as well as we all learn from each other. 


I am a trained executive coach and given my training, this should all be easy for me to deal with emotionally, right? Nothing could be further from the truth, but my training has finally  given me a different perspective on all of this. I can now see this as an great opportunity for learning and giving back. 


I meet lots of people who suffer from chronic pain triggered by different reasons:, back pain, surgery, PTSD, cancer treatment, chronic fatigue,fibromyalgia, you name it. I seem to be a chronic pain person magnet lately. 

There are no clear easy "take a single pill, one size fits all solution" for any of us, and I certainly don't have a magic fix  nor have I found anyone who truly does. I don't have the answers for you, and am constantly seeking them for myself, trying new things, asking questions, researching...


And I do fully believe in creating a plan of action by trying various options and integrating them into a plan that works for me . I won't give up or give in. I do lots of research, and  also ask questions of my health care providers and will not tolerate a brush off. I just find a new doctor. 


People can and should take action for themselves to regain their power and create a better, happier life should they choose to do so. I refuse to be a victim to my chronic pain. I stand in a place of hope and courage to move forward, in it, despite it. 


Christopher Reeves was and is still after his death a wonderful role model of incredible courage, personal strength and creativity, who took a similar stand with his life challenges. 


I have suffered from extreme chronic pain from back injuries for over 5 years and have finally accepted it as part of my life. I done just about everything I can from a western medicine approach, and yet I still hope for advances to come. 


The pain is becoming more manageable and my life is more enjoyable, and productive because I created a plan for my life that is working.




I have been athletically inclined since very young, and trusted my physical body to always be there for me, and I learned early on to not listen to pain. This belief  has served me in the past and has also been my downfall, in not listening to the signs that I was" literally breaking my back". 


Now, what I absolutely won't accept is that I have to give up my life, my dreams and becoming this "chronic pain".It is part of who I am but not what I am. Nor is living life as a drugged out zombie going from doctor to doctor for more surgery or meds or isolating myself. 


This is not an option for me and I don't believe it has to be for anyone, if this is not how you want to live your life. You are not alone. There are people and resources there for you, who understand how you feel. 


Every day I am consciously re-creating a life plan to accommodate my challenges, and given I am a data junkie, I am always out there seeking solutions and networking. It is fascinating, stimulating, and exhausting.  I feel a great need to give back to this community of fellow chronic pain survivors, as they have given back so much to me.  My hope is that this blog may prove helpful. 






Ciao,


Wendy


*I am not a physician or trained medical health provider. Before you go off or on any medication or drug ( which can be very dangerous if unsupervised by a physician), or consider a new therapy or treatment, please consult with your medical health providers. I am not here to provide medical advice. Any statements are my opinion alone unless I post a medical article. Do your research, know your options, and be in choice around your treatments.