People with cancer or myelitis or polyneuropathies or other chronic illnesses suffer with everyday pain.
***Sometimes the pain is just so bad you can’t live with it. Sometimes you think that there just isn’t enough medicine in the world that can help you deal with it.***
As the diagram above illustrates, someone with chronic pain will suffer even more when the worries and anxieties of daily living also get in the way. So, what can you do?
Well, I’ve found that there are a lot of things that you can do that help. First, let me explain the kind of pain that I have to deal with just about every day. It never really goes away.
I have Stage IV melanoma which has caused a paraneoplastic syndrome that has triggered a relapsing transverse myelitis and a progressive polyneuropathy along with autonomic dysfunction. In addition, I have pain from chronic osteoarthritis in my spine (herniated disks in all three regions of the spine: cervical, thoracic and lumbar) plus severe pain in my hands, wrists, elbows, shoulders, ankles and knees. The myelitis and polyneuropathies cause a lot of what is called neurological pain such as tingling, burning sensations and what I can only describe as big bee stings, particularly in my back and feet. I also get what I call the “inside” itches – it itches so bad but you can’t get any relief from scratching it and it comes in places you can’t reach anyway. On top of all of this I have reduced sensation (numbness) in all extremities. By telling you this, I hope that I have given you some idea of what I deal with personally. Now let me start to describe how I try to cope with it.
***In the beginning, my doctors kept prescribing a lot of medications to try to help me cope with my pain.***
I was taking a lot of opiates along with Lyrica and some antidepressants as well. While my disease does have an impact on my ability to function cognitively, I came to believe that all the medicine that I was taking was only leaving me in a deep fog. It did not really make the pain go away, it just left me in a state where I didn’t care about the pain. I was sleeping over 16 hours a day. I couldn’t do anything useful for my family.
While taking all of this medicine, I also had attended numerous classes in alternative pain management techniques. But at the time, I didn’t really incorporate them into my daily routine in such a way as to realize the maximum benefit. After almost a year of this drug fog, I decided to try to take control.
***Now don’t get me wrong, I was worried about it. I had come to rely on the medicine to “take away” my pain. But some of my doctors were advising me that I ought to try to take less medication. So I worked on a plan.***
This plan was part just me but I also worked with my doctors, specifically my primary care physician and my physiatrist in order to find the best way to control my pain and to improve my ability to function – to do the things I wanted to do more of the time.
***The plan involved slowly weaning me off all of the medication I was taking.***
Now believe me, I was afraid to stop taking the medicine because I knew how bad the pain was before I started taking it. So I had to deal with this anxiety in order to executive my plan. To do this, I went back to looking at all of the alternative techniques that I had previously learned about but had not successfully incorporated into my lifestyle. Getting off the medications gave me a baseline. It was not good. There was pain that I just could not live with. A lot of it was the neurological pain – the burning, the stinging, the itching, etc.
So, there were some drugs I could not live without. One was Lyrica. But I also had to experiment with dosage and the time of day that I took this drug. In the end, I take 150 mg twice a day. A lower dosage leaves me with pain that I can’t deal with. I started out taking it 3 times a day but have been able to reduce it to 2 times a day. But I have to stay on schedule. If I miss a dose or go too long in between doses, I pay dearly for the error.
***I do not now take any opiates for pain. I found that they did not do anything to eliminate the pain, they only masked the pain.***
I also ended up eliminating antidepressants. The side effects were just not worth any benefit I might be getting.
Now I do take a drug to help control what is called a pseudo-bulbar affect – wildly swinging moods that include laughing, crying and raging at things that make no sense whatsoever. This drug (Nuedexta) is very expensive but I can not live without it.
I do take Tyelenol occasionally when a certain pain in a certain place just gets too bad to manage. And I use a gel – Voltaren – that helps my joint and tendon pain. But you have to use so much of it to get any relief that I continuously run out of it.
Now let me go through some alternative techniques and how they help me or how they don’t help me at all.
***The first thing that you have to realize when dealing with chronic pain is that you will never be “cured”.***
There is no medicine, no surgery, no treatment that will absolutely get rid of your pain. If you believe there is a cure, you will not be able to control your pain because you will never stop searching for that cure – whatever you believe it might be.
Your brain filters pain signals. Your thoughts and your emotions play a role in how the brain does this “filtering”.
***So, the brain can either lessen the strength of the pain signals or it can ramp them up to the point that you literally go crazy with pain.***
Over time, with chronic pain, the brain can become more sensitive to the pain and may even overreact to less intense levels of pain.
For some people it may be necessary to use cognitive behavioral therapy sessions with a psychologist. I started with this type of therapy and I did find it helpful. But I also found that after about three months, I could use the techniques that I learned without continued weekly sessions. Each person is different so other people may need more support for a longer period of time.
***But my advice is to find a therapist who is experienced in helping people deal with chronic pain. It is a sub-specialty and not all psychologists are as adept as others in helping with pain.***
I can help control my pain by keeping my mind busy. Now I had to do this within the limitations of what I could physically do.
***On many days I could easily just pull up the covers and stay in bed. But I don’t. The first part of my daily routine, no matter how bad I might feel, is to get up and get ready for the day.***
For me, this is a daily shower and other hygiene followed by getting dressed. Sometimes I need a lot of help to do this and sometimes I need very little. But no matter what, I do this every day. I think that this is an attitude that helps me deal with pain – it will not defeat me.
***Another important strategy in learning to cope with your pain is to find something that keeps your mind and body focused on a task.***
For me that was at first family genealogy. I did a lot of this work on the computer. Something I could do for a few minutes, rest and then return. I had to be careful that I kept my mind busy without exhausting myself. If I did too much, then all I did was make the pain worse and cause ever more fatigue.
So you have to force yourself, even if you find something that works for you and that you enjoy very much, to not do too much.
***You want to do as much as your body will allow but not do too much so that your disease relapses into one of those really bad times.***
Now, I continue to use this strategy by writing this blog and also by posting things on my Facebook page. I can do it for fifteen minutes or half an hour, leave it and then come back to it. This focus keeps my mind from concentrating solely on the pain and thus I can enjoy some time where I don’t think I hurt so much.
I also use relaxation techniques.
***My fatigue will get to me every day sometime in the early to mid-afternoon. Knowing this, I try to get ahead of it because I have found that if I get to the point where this fatigue is overwhelming, then the pain will become overwhelming as well.***
So, about a half hour after lunch every day, I lie down on the couch. Usually I try to listen to music at the same time, other times I just listen to the quiet. Sometimes I just rest and sometimes I actually nap for an hour or so. If I do this before the fatigue overwhelms me, I find that I am in control and the pain also does not get out of control.
Another part of my relaxation strategy is to stay ahead of stress as much as I can. What I mean by stress are those negative things that happen in everybody’s life. What you must do when bad things happen is to put those aside and concentrate on the good parts of your life. I always remind myself that what has now passed is out of my control. All I can control is what will happen next. I have so much in my life that is happy and that blesses me every day. Thinking about all of the good things helps deal with those bad things.
***So when I relax I think about all the things I treasure most – my wife, my children, my grandchildren, food, wine, good whiskey and so on. It makes relaxation so much more effective.***
Diet also works for me. Now I don’t mean deny yourself all the things you love to eat. If you are craving something and you deny yourself that pleasure, I think that only has the effect of making the disease process worse.
***But I do think that you have to come up with a plan, a strategy that helps you eat healthy without denying yourself simple pleasures.***
For me I have combined a diet strategy with the diversion strategy that I talked about above. I have created an activity in my normal routine that focuses my brain away from the pain and fatigue and onto completing a task. I use the tools that can be found at a website, myfitnesspal.com, to write down everything I eat along with taking certain measurements every day. This tool keeps up with the nutritional values of what I eat.
***So, if I input each meal and snack into the diary every day as I eat them, then I know how much I have eaten and what I need to incorporate into the rest of the day to stay healthy. As a result I eat fewer calories and more fruit, veggies and whole grains than I otherwise would.***
Now this might not work for everybody but it does work for me. With diseases that cause chronic pain, you need to be sure that you have good nutrition so I think you need to have a strategy that works for you to meet this important goal.
***Along the way I have found that certain foods help me with pain. I have also found that overeating makes it hurt even more. So, I try to eat five times a day. A healthy breakfast, followed by a mid-morning snack, a light lunch and then a mid-afternoon snack and a later a dinner that fills out my nutritional needs for the day.***
As I said before, I do not deny myself simple pleasures. I find that a little dark chocolate in the diet is a pleasure and also seems to help me deal with the pain. I have also found that spicy food in moderation is a good thing for me as are Asian foods that contain ginger and Indian food that contains turmeric. These foods seem to help reduce inflammation so I recommend incorporating them into the diet as natural pain remedies. As a note, I found that using herbs and supplements were not as effective as eating food that include these helpful nutrients as a part of a healthy overall diet.
***I also drink wine, beer and good whiskey in moderation. If you do this and limit it to no more than the equivalent of one or two servings per day and no more than three to five servings per week, it does a lot of good and doesn’t do any harm.***
I am a believer in the beneficial health properties of red wine and I think a dark beer or a dram of really good Irish whiskey helps maintain the body at optimal efficiency.
***I have not found acupuncture, acupressure or therapeutic massage to be of much benefit. Maybe it’s just me, but they have not helped me much at all.***
Finally, I want to talk about topical rubs. Some people swear by them. I find them helpful especially on those days when it feels like my whole body is in pain – every joint, muscle and tendon crying out for relief.
***I use a topical rub that contains emu oil, aloe vera, menthol, and capsicum among other things that I find effective. Rubbing that on generously and wrapping up in a heating blanket provides a lot of relief.***
And, I can do that and try to keep my mind focused on a project at the same time! Just find something that works for you.
That’s my thoughts today on coping with chronic pain. I hope that you find something in there that helps you. It’s tough dealing with pain. There is no technique that will get rid of it completely. I wish you the best on your journey with chronic disease and hope you concentrate on those happy things in order help minimize your pain and suffering.