Firstly, I want to emphasize that what you are about to hear are my opinions based on personal experiences. I claim no medical knowledge or degree, and the views expressed are mine alone. I acknowledge there are many more things to know about chronic pain management. These five were the ones most important to me, and I wanted to pass them along, particularly to those new to this issue. However, please consult your physician or other professional for any questions beyond the scope the opinions expressed. Although I write about my genetic disorder, these tips apply to all who have chronic pain. Just substitute your disorder or challenge with mine.
Seven years ago, when pain from spinal tumors caused by my neurofibromatosis became unmanageable, I was despondent, angry and scared. I have lived with the disorder for over 50 years, and had one successful surgery to remove a tumor from my cervical spine in 1995. Now, there are too many tumors to determine which are causing the mind-numbing pain that I, like many of you, live with every day.
This left me with one option: Pain Management. But how was I to achieve that goal? Surgeons’ are not in the business of pain management, unless it means cutting something out. I quickly discovered that finding a pain management doctor in this political environment of fear and misunderstanding about safe narcotic dosages, is indeed a challenge, but it is necessary for many of us to survive this life of pain, and it can be done. However, there are many things you need to be aware of when approaching this challenge, and I have compiled a list of five I most frequently hear about and have personally experienced.
1. Finding a pain management doctor
a. So much of this depends, unfortunately, on where you live. If you live in a big city, it is a little easier. You might want to start with you family physician. If your NF has been diagnosed and your history with tumor growth has been charted, getting a referral to a pain management doctor should not be a problem. If your family doctor doesn’t know anyone or refuses to recommend someone, check with your neurologist, if you have one. The phone directory is always an option, but I would try and do a background check on the physician you choose if possible. It’s pretty easy to do online. At the very least, make sure the doctor is board certified. That is something that is very easily done online by going to your state medical association. Just put in the name of your state in your search engine. For example, Washington State Physicians would give you a list of medical associations. Primarily, you want to be certain your pain doctor isn’t dealing with any legal trouble regarding medication distribution, whether it’s true or not. Another good way to find a doctor is to post the question on the NF bulletin board (or the bulletin board for your disorder). It might take a couple of tries, but keep at it; you never know who is reading the posts, and someone will eventually point you in the right direction.
b. Once you find the doctor, make sure to bring your charts and any MRI’s or CAT scans you have from visits to your neurologist or other specialist. This assumes you have been diagnosed with NF (or other disorder) and have seen a neurologist (or other specialist). The main route around all the craziness about pain medication is the paper trail on your health. In most cases, this isn’t anything to worry about. I only mention it because some doctors are worried about prescribing certain pain medications, namely, narcotics.
c. Be sure to be as accurate as you can about describing your pain levels, when they are at their worst, what triggers the sudden spikes, etc. For example, in my case, sitting is my most painful position. I can only do it comfortably for two hours at a time because the tumors are on my lumbar/sacral spine. The doctor needs to know this so he/she can prescribe what’s best for you.
d. Bring someone with you to your appointment if at all possible. Also, bring along a mini-cassette recorder and record the appointment. This is recommended for two reasons. One, it is very easy to forget a question, or an answer. Also, if the doctor sees you are recording it, they tend to be very specific and careful with their responses to your questions. Let them know you are recording it because you tend to forget things; you don’t want the doctor on the defensive, and in any case, that is not the purpose of the recorder. Discuss medicinal treatment options including the pain pump; an internal device that time releases the medication to the needed area. Arm yourself with as many questions as possible, and make sure you receive an answer you understand. If you don’t understand something, speak up. Never walk away confused about something.
e. Once you have tried the treatment plan for a period of time, say three to four weeks, let the doctor know whether or not it is working. This is obviously the most important part. It may take some time to find the correct dosages and the correct medication. Try not to be impatient, though that part is difficult due to the pain.
f. When you read about a particular drug on the bulletin board or somewhere else on the web, take it with a grain of salt. This is very, very important to remember. There are no panaceas or ‘one fits all’ fixes for chronic pain, whether it is caused by neurofibromas or tennis elbow. Everyone is different! Think of it this way: Not everyone can eat dairy products or other kinds of food. The same is true for medication, and you must remember that if you are going to find what works for you.
g. While drug therapy may help with the initial problem, pain management, it can wreak havoc on other parts of your body. It is therefore very important to monitor other health problems that may arise, such as a change in your digestive tract, your liver function, hearing loss, eye sight, respiratory problems and any number of things that can be affected by this treatment. Note any changes in your body apart from the pain, and report them to your doctor. If, at some point, you are able to lower your dosages, do not attempt this without your doctors’ knowledge and guidance.
2. “Alternative” treatments
I hesitate to call these treatments “alternative” because some have been around longer than many western medicine approaches, but it seems to be a label that has stuck! I realize that many of these options are not long lasting, nor are they covered by insurance and financial concerns might prevent you from seeking them out. However, they do work and they are important to included.
Before assuming you can’t do it, speak with the practitioners; many times, they offer a sliding fee for people like me, who live on disability and have great financial stress. They can do this because many do not work with insurance companies, and even if they don’t, they tend to be flexible. Several years ago, I was working with a healer who used a combination of things; acupuncture, massage something that was a little like Reiki, which I will be discussing next. When I first started seeing her, I was taking 100 mg of methadone a day. I don’t know what she shifted, but I swear, it had been at 100 mg a day for four years and within a month, it was done to 60…and it’s stayed there four years and counting! My Neurontin was at 4800 mg, and dropped to 3600….and that’s stayed there too. This is a good place to remind you not to decrease your medication doses by yourself. Too many things can go wrong, which I will discuss later.
a. Reiki – Reiki is a very gentle healing touch that uses energy from the hands of the practitioner. It’s much like acupuncture, without the needles. So if you have a needle phobia, this is a good alternative. I have been getting Reiki treatments for several years now, and I always feel better afterward. The feeling lasts for a day or so, depending on how much physical activity I do afterward. It allows me to get some things done that I would normally not have the energy to do. As with all your practitioners, make sure you are comfortable with the person with whom you are working. You may feel a bit uncomfortable at first if the treatment is new to you, so give it a few tries before switching, if you need to do so.
b. Acupuncture – I have had acupuncture treatments for over 25 years for various ailments and they do make a difference for me. It is most helpful with the physical problems that arise from treating the pain medicinally, i.e., stomach problems, digestive issues, headaches, etc. As mentioned, when managing pain with pills, especially narcotics, you have to be very careful and watchful of other physical challenges.
c. Massage – Let’s face it, as everyone who has had a massage knows, it feels good regardless of whether or not you are in pain! And it does have some practical medical benefits: It can relieve stress, helps you relax, helps you concentrate on your breathing which, by the way, is very important for diminishing pain levels. I strongly recommend massage as a way to relax, which can in turn, reduce pain levels.
d. Meditation/Breathing. Well, breathing is hardly an ‘alternative’ is it? But you would be shocked to find out how little of it we do. Really. Stop and check in with yourself every once in a while. I guarantee you will find that on many occasions, you will find yourself holding your breath. My cell phone has the word “Breathe” under a picture of my cat. It’s a reminder!
We hold our breath unconsciously because we are so stressed out about the pain, we literally have stopped breathing. The stress of chronic pain causes all sorts of unconscious responses; anger, mood swings, impatience….and the cessation of breath. This requires no special treatment, no special practitioner; you alone can control your breath, but you need to be aware of it first.
Do not be put off or scared by the word “meditation.” It’s just another form of breathing, really! Get yourself in a quiet place; turn off all distractions, like TV, music, spouse, kids, etc. Just sit quietly. Focus on your breath. And be still for as long as you can. Start with two minutes, and gradually work your way up. People think there is something secretive or undoable about meditating but I promise, that isn’t the case. Your mind will wander, but just let it. You don’t have to concentrate on anything in particular, just let your mind go. Try not to focus on any one thing, especially pain. If you find you are thinking about the pain, just say “thank you for sharing” to your mind (unspoken, just in your head) and try to let it go. I’m outlining a very easy starting point; you can find many books on meditation, and if you get serious about it, buy (or go to the library and borrow) a book about it. At the least, it will be a distraction for a period of time. At best, and this does work, it will lower you pain levels to the point where you might be able to cut down on your meds. It happen for me, it can happen for you. However, remember not to lower you pain meds before talking to your doctor. This is very, very important. Most likely, you were titrated up to a certain level, you must come down the same way or you risk a nasty withdrawal that can be very dangerous, especially with narcotics.
a. Finding support when living with a condition that for a lot of us, is invisible, can be difficult. I have read the frustration people feel when dealing with friends and loved ones. One woman posted on the NF website that her family basically told her to keep a stiff upper lip. No one knows the effect that chronic pain has on us, but us.
And it does have a physical effect beyond the pain itself. It can lead to anxiety, depression, hopelessness and a host of other problems, all of which exacerbate our pain. We want so much for people to understand. But know this: I spent years feeling bad about the people who thought I was ‘making it up’ and not only doesn’t it help to feel bad about it, it doesn’t change a thing. People are going to believe whatever they believe, think whatever they think, and no amount of coaxing, crying, etc. will matter. Generally, one must experience something to have empathy for it. Not always, but often. What you can do, is go to the people who will support you. The bulletin board at the website for your illness is of course, the best place possible.
If you are set on changing someone’s mind, you might want to send them the link to website about your illness and ask them to read about all the other people with the same condition, who also deal with chronic pain. This is no guarantee that it will change their minds, and I suppose if they want to be nasty about it, they can say you ALL have the same psychological problem….who knows. Who cares? Yes, it can feel heartbreaking not to be believed; trust me, I know. But there is nothing you can do about it. It’s best for your sanity and pain to move on. Frankly, I have found that forgiveness lessens the pain. That’s because you have let go. Letting go can translate to letting go of the pain, I promise.
b. Supporting others with chronic pain is one of the most effective ways to reduce your own misery of which I am personally aware.
In fact, helping anyone with anything is a great way to keep your mind off your troubles, which I will talk about later. The old adage, what goes around comes around is one to keep in mind. If you are not getting the support your need from those around you, give someone support, and go where you will get it! There are many chronic pain sites on the Web, although not everyone there has the same issue we do. But it is imperative that you find some kind of support, so you don’t feel all alone in this, because you are not all alone.
4. Distraction and Pain Relief
Personally, I have found that distracting myself from the pain is one of the best ways to not only take my mind off it, but actually decrease the pain, or at least, our perception of it. This would be a good time to discuss the difference between pain and suffering. Many think they go hand in hand, but they do not!!
Pain is something that just happens when something goes wrong in our bodies; whether it’s an emergent pain, like slicing your fingers instead of the vegetables, intermittent pain caused by a host of diseases, or chronic, intractable pain, caused by many things besides neurofibromas.
Suffering, on the other hand, is how we deal with all that pain. It’s our perception of it that makes us suffer/not suffer. We have all had moments, sometimes even days, when the pain isn’t as bad as it was the moment before. What causes that, besides the medication? Trust me, much of the reason it subsides is because consciously or not, you have involved yourself in something in that moment that has taken your mind off the pain.
a. Involve yourself in something you can comfortably do. I must spend my time flat on my back since it is when I am in the least amount of pain. So I have a laptop that sits on a mini desk that swivels up and down. I can lie on my couch and write, surf the net, and even eat. When I am writing, I am not thinking about pain, and it magically decreases. And when that happens, I am definitely not suffering.
b. Reading is my second favorite thing. I manage to get to the library at least once a week because buying the amount of books I read is out of the question. I personally am not much for book groups, but if you are able to join one, I suggest you do. There are on line book groups if you can’t get out.
c. Support someone in need! Again, you don’t have to physically leave the house to do that. I’ve helped other NF’ers get started with the bulletin board, or just respond to someone’s post. Helping someone else, however you do it, is not only appreciated, it takes your mind of your troubles. There is always someone worse off then you.
d. I don’t have my own family, but doing what you can do with a family member is definitely a distraction. My brother and sister and I are very close and they are very supportive of me. I also have nieces and a nephew, and I spend as much time as I can with them. Clearly, you need to be with those who support you, not those who challenge your situation in a negative way.
e. Friends are sometimes hard to come by when you can’t do much, aren’t they? But good friends stick by us and don’t mind coming to us with a DVD, some food, or just conversation. Listen, I’m not some feel good dispensing suggestions from the point of view of knowing nothing. I live this life of pain! I DO know what it’s like to sit by yourself, day in and out, wanting to pull your hair out. Once, when this nightmare was only three years old, a friend called and was chatting away about having the flu, and how she had to spend the whole day inside, and it was making her nuts!! I didn’t say anything. After a moment, she said “I guess you know, huh?” People are human. The best friend in the world is going to occasionally say something that makes you want to scream. But let it go. It only makes the pain worse, and it‘s not worth arguing about. Our friends are stretched enough as it is. Trust me, your illness isn’t easy for them, either and let’s face it, you probably drive them crazy at times too, with or without your illness.
f. Thank goodness for Netflix, eh? They actually have some very inexpensive plans. I discontinued most of my cable stations, signed up for Netflix, and not only do I have more options, it’s cheaper!
I have learned this the hard way. The medication I need takes away my appetite big time, and for years I took my medication on an empty stomach. Bad, bad girl. It took awhile, but it finally caught up with me in the way of horrible constipation (not unusual for NF’ers anyway), acid reflux and a bunch of other things I don’t need to go into. Beyond that, good nutrition actually helps the pain.
a. Protein. Protein, in the way of chicken, fish, eggs, seems to help the most. If I am in a lot of pain and haven’t eaten, I immediately eat something high in protein and believe it or not, the pain lessens.
b. Staying hydrated. It’s important to drink a lot of water anyway, but especially if you take a lot of medication. This too, relieves the pain.
c. Chocolate. Okay, I refuse to give it up, no matter what. Now, I AM NO DOCTOR AND THIS IS ANECTODAL, but I just heard that if you eat dark chocolate with a cocoa content over 70%, the benefits outweigh any ‘bad’ things about it. Getting a little lift in the way of endorphins never hurt, right? Actually, there are a lot of health benefits from eating dark chocolate, and some interesting websites such as chocolate.org that will tell you about them!
d. Eating regularly. I find a small amount of food more often is better than three meals a day. But that’s because I’m prone most of the time, and digestion is difficult for me. The bottom line is, make sure you have something in your stomach when taking strong medications. Any medication, really!!