I have a genetic disorder that affects my collagen and connective tissues. My main problems are with pain, muscle spasms, and dislocating / subluxing joints. My pain was so bad when my chronic illness first began that I fell into a deep depression, stopped eating, and eventually became severely anorexic. I was even suicidal and was consequently hospitalized multiple times. It's been a hard battle with lots of therapy and emotional struggle to put my life back together, but finally getting my chronic pain under control was a HUGE part of it. I discovered I could actually have a good life filled with joy and love - perhaps not the life I expected to have, but one very much worth living and sharing.
Here's a look at what I do to help manage my own chronic pain. Perhaps it will provide ideas for you or inspire you to keep pushing forward and fine tune your own pain management...
~* My Pain Management elements *~
~I sleep on an adjustable bed since it is too painful to sleep lying flat. I use a cervical pillow under my neck, a pillow under my knees and an eggcrate foam pad under my heels. I have a bed cradle to hold the covers off of my feet, since the weight of them is too painful on my toes. I could not manage without my adjustable bed and sleep number mattress at all; even though it was expensive it has truly aided my ability to sleep restfully.
Since I cannot lay down on my back for more than 4 hours without having severe pain and spasms, I have to split up my sleep schedule. I lay down about 8:30 P.M. for a short meditation and sleep until about 10pm. I then get up and do normal evening things with my husband until he goes to sleep. I don't go back to bed until about 4:45 A.M. and then I get up at 8:30 A.M. and go directly to the YMCA pool for my physical therapy so I can loosen up my body to start the day.
It is not easy to maintain such an odd sleeping schedule, but it has made an amazing difference in my daily pain level. My brain might be a little mushy through the day, but splitting my sleep time to limit the amount of hours I am down remarkably lessens my stiffness, spasms, and overall pain.
~I use heat (particularly a heating pad or hot shower, and a hot tub when I’m able to get acess) as a first step when I have a pain flare-up. And of course, I have my Pain Crisis Plan ready when I have a serious pain crisis. You can read about that HERE
~I use a wrist splint while sleeping and I even have a waterproof one made of neoprene to wear when I am in the pool doing my deep water fitness therapy.
~We installed a handicapped toilet seat in our home. I was embarrassed at first, but what a difference it makes with my hip pain and instability. Few things are more embarrassing then getting stuck with a dislocated hip in the bathroom!
~I do deep water fitness as my physical therapy at the local YMCA pool seven days a week. This type of exercise got me off of being dependent on a cane. It helps me so much that I notice a difference in my mobility when I miss just one day. My muscles have strengthened and this has cut down a lot on my joints popping out. Being in deep water is very forgiving to the body, preventing any pounding or jarring of the joints but still giving you a full range of motion workout. I often see people doing deep water fitness after joint replacement surgery or when recovering from knee and ankle injuries which prevent their ability to do any other kind of exercise.
“Life is not a final. It's daily pop quizzes.”
~When I was able, I used to get a therapeutic massage twice a month. This helps to keep the muscles loose and prevent tightness from building up and leading to muscle spasms. It’s also very relaxing for the body and mind and simply feels good!
~Once a month I get needle treatment from my pain specialist, a combination of acupuncture and dry needling (which is based on trigger points). I couldn't live without it - it's fantastic! The National Institutes of Health (NIH) introduced me to the technique and it's been a life-saver.
~I take a mix of over-the-counter and prescription medications to help manage my chronic symptoms and pain. It took a long time of trial and error to settle on just the right combination. Sometimes it’s hard to keep faith when you are continually trying different pills and dealing with side-effects or deep disappointment it fails. But you must forge ahead and not allow yourself to give up. New drugs and treatements are being developed all the time.
With the aid of the National Institutes of Health Pallative Care Clinic, I was introduced to time-release painkillers. I used to fight against the pain and wouldn't take any medication to relieve it until it got so bad nothing would bring it down. Time-release pills take all the self-argument out of it, and helps my body maintain a balanced level of meds in my system, keeping me on an even keel. I still have pain, but I am not stuck in the fetal position in my recliner, isolated and depressed. I can function pretty darn well, and on bad days I can take a little extra pain meds or try one of my other pain management options.
I could never survive without the time-release painkiller and I recommend them highly for those with chronic pain like ours. Drugs which are in our system for only a few hours, like vicodin, are a poor choice for chronic pain sufferers. They are quick-cycling, in and out of your system rather quickly, and often leave you at a lower level than than before you took it. They also require you to take many pills a day and that’s part of what leads some people to have issues with overuse. Discuss medications with your pain specialist and keep an open mind as you work on finding the perfect combination.
~I have a wheelchair for when I need to stand a lot or when I'm traveling. Though I would prefer to be on my own two feet, I can do and see more and not suffer pain (and the resulting frustration from it) by using the wheelchair. At first, I was very resistant and felt like it made me a ‘cripple’; I was embarrassed, angry, and depressed. Eventually I learned to accept it and recognize the benefit of not pushing my body beyond its limits. Using the wheelchair is like wearing my glasses; it doesn't make me different, it makes me equal. Life is so much easier. I have a manual wheelchair with a special power adapter and a lift on the back of my vehicle so I can be totally independent without a huge, heavy, expensive electric chair. There are so many options for mobility, from canes and walkers to wheelchairs and scooters. Be honest about your needs and work with a physical therapist to find the best fit for your body and lifestyle.
~Consider ergonomics, and not just in your workplace. Recently I had my physical therapist make a home visit to evaluate my favorite recliner (which I spend a lot of time in), my bed with all its accoutrements, and my computer desk area and chair. I found that although I had done well with my bed and computer chair, my recliner and computer set-up were completely wrong for me and likely exacerbating my pain. I am now in the market for just the right recliner chair to support my back and length of body (I am six feet tall and very long-legged) and ...
completely revamping my computer area. You might also want to evaluate your kitchen space if you do a lot of cooking or any other part of your home of where you spend a lot of time and activity.
~When I needed it, I used to see a personal therapist to help deal with the frustrations and struggles in my life related to all aspects of my illness, and definitely including my pain. It was a place I would feel free to say anything I wanted without hurting the feelings of my husband or family and I could get feedback and options for improving my life and relationships. I found a therapist who was formerly a nurse so I never had to explain the medical aspects of my condition. Find someone with whom you are very comfortable and who has experience counseling those with chronic illness or pain.
~I used to regularly attend a free pain management education & support class offered by a local nonprofit chronic pain association. Connecting with others who have similar problems and sharing advice about meds, treatments, coping, etc. can help tremendously. See if there’s a pain support & education group in your community or join one online if this appeals to you.
This is my own list of things I’ve pulled together over time to help deal with my chronic pain. It's made my life much easier - not pain free, but much more independent and enjoyable. The trick is to keep trying different options until you find the right mix for *you*. Ask your doctor about ways to better manage your pain, through meds, treatments, therapies, exercise, etc. I highly recommend having your own personal pain specialist if you don't already have one. If you don't like the one you have, then try another. You need a comfortable working relationship with all the physicians on your team. It can make all the difference.
Life does not have to be miserable or cease entirely because you are in pain. The key is to evaluate it honestly and do what you can to work around it. Striving for good pain managment and maintaining it daily can help you avoid the horrible suffering I endured. This is why I have dedicated my life to seeking information for others to keep them from being stuck in the hopeless hell of chronic pain, depression, and defeatedness I was trapped in for so long.
This is now my mission; to use my own personal experience and also actively seek out all the new and useful pain relief options as they become available. If I can help just one person avoid the pitfalls I fell into, then my efforts will be well-rewarded.
I wish you all good luck in your journey & definitely less pain!
To aid you in your own pain management quest, here are two very helpful links which provide concrete ideas and suggestions. Although these articles were specifically written for those with fibromyalgia/cfids, they are useful for anyone with a chronic condition: