Rob Redden, M.D.
February 26, 2011
Editor’s Note: Rob is a family practitioner who has HSP. This article is for people with PLS as well as HSP.
Regarding pharmaceutical pain treatments, we are sadly lacking in this world. We have acetaminophen (which is always worth a try), aspirin and related compounds, cousins of aspirin called non-steroidal anti-inflammatory drugs (NSAID’s), a new class of NSAID’s called COX-2 inhibitors, narcotics, and a single drug which goes by the brand name of Ultram, which falls in a class by itself. There are no other over the counter or prescription pain relievers!
Acetaminophen is the safest, as long as you do not have preexisting liver disease and do not exceed recommended dosages for more than a few days at a time (One of my saddest experiences has been to watch a young woman die of liver failure while we could do nothing to help her. She had understood acetaminophen to be safe, so thought it would be okay to take twice the recommended dose, and had been doing so for four months before she appeared in our emergency department with a non-functioning liver). It is a mild pain reliever and has no anti-inflammatory properties, but it is as strong a pain reliever in adequate doses as aspirin or the NSAID’s, it is inexpensive and readily available, and we do not as a group have inflammation as a cause of our pain, anyway. It is worth a try, especially if your pain is relatively mild. It is available by brand names, such as Tylenol, or as a generic. Most drugstores have their own. It is also sold in a number of agents, mixed with other drugs.
Aspirin is a reasonable pain reliever and offers the benefit of decreasing the risk of heart attacks or strokes (at least when taken one tablet on a daily basis). It is also dirt cheap. The major setback is that it is prone to cause ulceration of the stomach, and people who use it chronically are at risk of bleeding from a gastric ulcer and even of dying from severe hemorrhage. There are coated forms and related compounds that dissolve more slowly, so that they are absorbed further along in the small intestine and have less opportunity for causing stomach troubles. They help a lot of people with pain but are thought of less often these days because they are available as generics, so that no drug company representatives are knocking doctor’s doors down to remind us of their use and potential benefits. Salsalate and Disalcid are two brands that come to mind and which I have used with much success. In terms of aspirin, itself, it never fails to surprise me how many people confuse aspirin and acetaminophen, believing they are the same and interchangeable. They are not. Again, acetaminophen taken according to directions is much safer than aspirin. Another issue that arises is whether it is important to buy an expensive brand name, such as Bayer. In terms of treatment benefits, generic aspirin is every bit as effective as Bayer.
Non-steroidal Anti-Inflammatory Drugs
The NSAID’s are a now large and continually growing group of pain relieving and anti-inflammatory drugs. There are several issues that come to mind when I think of these. This is a group which is prescribed a lot because pain is so common, and either doctors fear prescribing narcotics, or patients are unable to tolerate them. This degree of demand and potential profits keeps the drug manufacturers belching out new ones year after year. The problem is, the newer they are, the more expensive they are, even though when you look at them in use over large groups of people, no one is more effective than another. What we find, though, is that one may be just the right thing for a given individual, so it is worthwhile to try a number of them until you find one that works for you. Quite commonly, after enough experimentation, a given person can find just the right one for him or herself. If you have limited resources or have three tiered co-pays for your prescriptions, or even if you’re just concerned about the constant and ridiculous escalation in the cost of medications, ask to try old generics before you are offered any of the new agents, which are tremendously more expensive and no more likely to be effective. The over the counter agents containing ibuprofen and naproxyn fall in this category, and for me it has turned out that none has worked out as well as generic ibuprofen. These agents also carry a risk of stomach ulceration and can cause altered function of the kidneys or liver, so in long term use, you need to have episodic lab testing.
The Cox-2 inhibitors
The COX-2 inhibitors are a new sub-class of drugs, which as of now includes Vioxx and Celebrex. They are actually NSAID’s, but they function in such a way that they are less likely to cause ulcers. If you have had history of ulceration or other stomach problems, they might be a good choice for you, but they are no more potent as pain relievers than any of the others, and as they are among the newest agents on the block and they have this other potential benefit, they are very expensive. Even if you’ve had stomach problems, there are only two of them, and neither may be just the thing for you. Some people need to use one of the other NSAID’s with a second agent to protect their stomach. In fact, I use a drug called Protonix to protect my stomach from the ill effects of the ibuprofen, and I do fine. On the other hand, I just recently admitted to the hospital a woman who had almost bled to death from an ulcer apparently caused by her use of one of these two agents, so their lack of effect on the stomach lining is not perfect. Someone mentioned in recent discussion excellent benefit from Celebrex. Clearly there are a population of folks who do well with this medication, just as with any of the NSAID’s, but before everyone goes running off to their doctor asking for Celebrex, recall that it is no more likely to benefit you than any other NSAID and that you might want to take some of these other issues into consideration. I tried both agents, and neither one did anything for me.
Narcotics are the most potent pain relievers, but there are a number of problems associated with their use. Many doctors do not like to use them to treat folks with chronic pain, unless it is due to cancer. There is some risk of physical dependency, although it is probably less than is generally surmised. The biggest limitations to their use are related to side-effects and inconvenience of use. Side-effects are numerous and common. The most notorious one is fatigue/sedation. I use the weakest of them, propoxyphene (Darvocet-n-100), myself, because to take ibuprofen as often as I would otherwise need it, my stomach does not tolerate, but I take the propoxyphene doses at night, and they help me to sleep. Even that, as the weakest of the group, I could not take during the day and still function (although I take tremendous doses of Baclofen, as well. Perhaps if not for the Baclofen…). They also have effects on bladder function—primarily urinary retention, which is not at all well tolerated by souls with coexisting bladder spasticity—and on colon function. They are notorious for causing constipation, and from prior discussions here, it appears that constipation is common among us. If you use a narcotic, you need to start a constipation fighting campaign even before you start taking the narcotic. It is unsafe and illegal to drive while under the influence of a narcotic, even when used for a medical condition. Regarding inconvenience, the narcotics often have to be taken on a frequent basis, and doctors, fearing narcotics addiction in their patients, are prone to provide less than adequate supplies to meet the need. Patients with pain end up trying to tolerate pain as much as they can in order to save the available medication for when they "really need it." The more potent ones also require that you have a prescription in hand to get them filled. They cannot be called in by phone, and this adds to inconvenience.
There are newer forms of narcotics, including extended release tablets of oxycodone and morphine, generally taken twice daily, and a fentanyl patch, which one needs to change only every third day. If you have chronic pain of a moderately severe to severe degree, one of these would probably make the most sense for you, as the medication is delivered at a slow enough rate that it is less likely to cause sedation, and one does not need to try to figure out how to distribute their tablets over time to get the best effect.
There has been considerable discussion of Oxycontin in the news lately. This is an extended release form of oxycodone. Narcotic abusers have discovered that it is a potent source of narcotic if they use it inappropriately. There is room for personal points of view in this discussion. If you have chronic pain, this sort of medication is likely to provide you with the best, most consistent, and most convenient pain control, with a lesser likelihood of causing physical dependence than the shorter acting, take as needed forms. I use it with much success in my chronic pain patients. As far as I am concerned, I am troubled to see discussion that frightens people with legitimate pain who could benefit from the medication, on account of the reality surrounding drug abusers. There has been some sensationalization of the potential for individuals to be beaten or simply robbed for their pain medication, but that has always occurred to a minor degree with any narcotic pain reliever, and I do not believe it is likely to occur to a drastically greater degree with this medication than with any other narcotic. I have seen no evidence of this occurring in my practice, nor among my associates. People with legitimate need for this sort of pain medication should not feel that they are drug abusers for using it, if they use it as prescribed, and they should not feel too fearful, as long as they do not run around announcing to the world that they are using this medication. There is also an intrathecal pump, such as that we have discussed in use for administering Baclofen, which can administer morphine on an ongoing, controllable basis.
Ultram works in a way related to the function of narcotics. It is of moderate potency and comes as a tablet. It was initially believed that it would have less of an addiction potential than the narcotics, but it has proven otherwise. Still, addiction occurs primarily in folks who misuse these medications for recreational purposes, rather than in those who use them for true pain control. It has also proven to cause a lot of sedation.
Summary regarding pharmaceutical treatment of pain
Unfortunately, as of this point in time, that is the total of prescription medications available specifically for treatment of pain. There has been discussion in recent years of an agent being investigated that is derived from the venom of a poisonous frog from the rain forests. The report has been that it has a tremendous effect in terms of lessening pain and that it has no addiction potential and is non-sedating. It sounds wonderful (almost too wonderful to be true), but I have heard nothing about it being in the pipeline for actual use in the near future. I remain hopeful but uncertain.
Other classes of medication that can lessen pain
Of course, with spasticity as a common cause of pain, antispasmodic medications, when and where tolerated, can also help in the relief of pain due to HSP and PLS. Unfortunately, there is much variability among us in terms of both tolerability and effectiveness of these agents. Depression commonly increases the severity of pain, and it is a common outcome of a chronic degenerative condition. In people who have pain and who are depressed, antidepressant medication can lessen the pain, as well as the other symptoms of depression. Similarly, insomnia can increase the severity of pain. People with insomnia may benefit from medical evaluation and possibly from treatment with sleep inducing medications, which may, in turn, lessen the associated pain while improving sleep.
Non-medical and non-prescription approaches to pain control
Non-medical and non-prescription approaches to pain control abound. Some of them require a doctor’s prescription or referral. Some are paid for out of pocket. That may unfortunately put their availability out of reach for some, but there are plenty that are readily available and inexpensive, or nearly free. I think of herbal preparations or other non-prescription oral agents, magnetic therapy, various forms of physical manipulation, acupuncture, water treatments, topical agents, and electrical gadgets that can help with pain. I am not sure if they all help with the pains associated with our conditions, but I have tried a number of them myself with success, and I have heard mention of the successful use of others by a number of folks. I have no reason to think that any of them should not be as successful in helping in HSP or PLS related pain as in pain due to other causes. I will describe them just in this order which has occurred to me, without any intention to suggest by the order presented anything regarding the degree of effectiveness. I have no financial interest in any of the treatments I will discuss.
I am sure that herbal preparations for the treatment of pain abound. I suspect that many of the purveyors of herbal remedies have their own concoctions for pain control. I have seen them listed in catalogs of two different companies, each with totally different ingredients. I learned of one through my own mother, who has suffered with rheumatoid arthritis and fibromyalgia syndrome for decades. Two weeks into taking the agent, she was free of her joint pains, and felt so much better that she took up hiking with joy, in spite of her ongoing fibromyalgia! Then, after five weeks of taking it, to her surprise, as the stuff was advertised as a remedy for joint pains alone, her fibromyalgia pains disappeared. Now after several decades of living with debilitating pain, she is pain free. I had pain of a degree that I would be in tears on the way home from work, so with some skepticism I started taking the stuff, as a trial. It took about five weeks, and I had to double the recommended dose, but it has cut my pain down by about sixty percent. Finding I have no more tears on the way home from work makes it worthwhile to me. It is called Joint Advantage, and you can find it at drdavidwilliams.com or by phone at 1 (800) 888-1415. Another oral agent which helps a lot in people whose joints are taking a beating for whatever reason, including the altered gait associated with HSP and PLS, is glucosamine. I was skeptical of this when I first heard of it, because I presumed the molecules would be digested and delivered to the blood stream as amino acids and sugar molecules which could have no different effect on our pain than the amino acids and sugars we get from eating most of the things in our diet. Then I learned that in Germany, where their national health institute has more concern with the benefits of non-pharmaceutical treatments than does our own, they have done copious testing on the benefits of glucosamine and have demonstrated it to be in many cases more effective than NSAID’s—and certainly safer and less expensive—in the treatment of joint pains. However, there are several points to consider. The manufacturers are in the habit of selling it in combination with another molecule called chondroitin. I suspect it is easier to prepare the stuff by leaving the chondroitin in along with the glucosamine, they are able to get more salable material from the animal tissues they derive it from, and it allows them to charge more, because you are "getting more." The problem is, the chondroitin molecule is huge and is not digested, so it goes right through your gut. You pay more for it and get no extra benefit from it. Glucosamine alone is the effective agent. Glucosamine does not work on a "take as needed" basis. In fact, you need to take it regularly for at least two months before you can decide whether it is helping or not. Several tablet potencies are available, and it can be taken two or three times daily. I generally recommend one thousand milligrams twice daily. If you are a vegetarian, you don’t want to know about the stuff. Another issue is cost. The GNC chain has it available, of course, but at a premium. I buy mine at Costco and pay about a third as much, so it is worth looking around.
Another interesting area is magneto-therapy. I was very skeptical about this when I first heard of it, and my first shot at trying it was useless and seemed to confirm my skepticism. However, a number of studies have been done and demonstrated that magneto-therapy does lessen pain better than a placebo (a device that looks the same, worn without any magnets inside). It was initially recommended to me by a physical therapist who was selling magnet products about eight years ago, when they were a pretty new idea around here. She thought/hoped magnetic insoles would lessen my spasticity. Of course that was destined to fail, but since pain became a regular part of my life, I have taken to using a magnetic mattress pad with good benefit. The nights are the most comfortable part of my day! You can get magnets for a number of areas of the body, fit into a number of different devices. There are a number of brands available. One particular brand, Nikken, has been mentioned repeatedly as being the most ?effective/?reliable, but I don’t know what evidence there is behind those claims. My understanding is that the magnets are powerful enough that they can alter the magnetic settings on your pump if you have an intrathecal pump for Baclofen or morphine, so if you have such a device, you should forget about magneto-therapy.
Several folks have mentioned getting benefit in the treatment of pain from physical therapy. There are numerous different types of physical therapies, ranging from basic massage to PT techniques that result in deep tissue stretching (myofascial release techniques of several sorts), treatments in which the therapist directs the patient to relax certain muscles by intentionally contracting others (muscle energy techniques), and relaxing of painful trigger points (trigger point release techniques). Although people often complain that, "I could have put heat on myself", (and I am annoyed as well, when I have referred someone for PT, to learn after the fact that the only thing to be done was to put on a heating pad and leave the patient alone without any other contact), the heat sources used in PT are much more potent sources of heat than anything you can arrange for yourself, and this can help with pain control. Therapists can also use ultrasound devices with some success. One massage therapist with whom I have worked claims that individuals with spasticity should have cautious, shallow massage, in order to avoid triggering an increase in the underlying spasticity. She performed such massage on me, and although I was surprised with the gentleness of her strokes, the massage was very therapeutic. This is a sticky area, because PT and massage are expensive, time intensive techniques, and they may not be covered by insurance or the insurance may drastically limit the number of visits. That being a given, if you have access, it is worth trying different sorts of therapies until you find one that helps. I have had some benefit from chiropractic treatments, as well. There are other techniques that can be provided by a physical therapist that I will discuss elsewhere, because they can be applied to an individual by him or herself or with the assistance of a close, well-meaning soul.
Acupuncture has been clearly demonstrated to reduce or resolve pain of many causes. I know nothing of its potential benefits for us, except that there has been some commentary on the listserv of individuals finding it beneficial. People have expressed worry about the pain of being stuck with needles, but the general understanding of the technique is that acupuncturists learn to "apply" the needles painlessly. I have referred folks to acupuncture, and the general response has been one of satisfaction, without any mention of the needles. This is another area where insurance coverage tends to be a problem, and it remains difficult to find an acupuncturist in many areas. When I was in treatment at a local rehabilitation hospital, I asked about potential PT treatments. It was at a time when I did not yet have pain, but was seeking means to improve my strength and balance and lessen my spasticity. Somehow they got it in their heads that my best bet would be to see a former therapist who had given over his professional life whole heartedly to the art of acupressure. He assured me that it would do remarkable things for me. Unfortunately, it actually aggravated my spasticity and induced pain at a time when pain was not yet an ongoing part of my life. I do not know if it would be fair to generalize my experience, but I would approach this with caution. After that experience, I found a book in a book store on the topic, and I bought it to see if the bad outcomes were related to the particular techniques used or to the general characteristics of acupressure as a treatment. My outcome was as bad as what I had experienced in treatment.
Hot water! There’s almost no more to say. Aside from the exercise benefits of swimming, sitting or floating in hot or warm water can do a great deal to lessen pain. It is readily available and very inexpensive. The only problem here is you can’t take it with you, and the effects are not very long lasting. Exercising in water can have tremendous benefits for people with painful joints, bad backs, and spasticity that makes it hard for them to lift a leg out in the dry world and its gravity. The buoyancy of the water makes it much easier and much less painful or uncomfortable to do useful exercise. In a professional aqua-therapy pool, the water is very nicely heated, as well. Here, again though, you get into the issue of insurance coverage, and you may need a doctor’s prescription to get started. Not that it’s a major hurdle, but it is a little unsettling to feel so wonderful and then find, when you get back out into gravity at the end of your workout, that you feel you can barely hold up your own weight.
Everyone knows of Ben Gay, Icy Hot, Aspercreme, and the like. These can help to a degree. They are called counter-stimulant agents because they help decrease pain by taking up part of the nerve’s capacity to send a pain message by sending a different, less obnoxious message. I became aware several years ago of an oriental preparation akin to these which contains similar active ingredients but in much higher concentrations. It has appeared to me to be considerably more potent and is oil based, so it also acts as a good medium for massage. It is called "Kwan Loong Oil." You may find it in a local oriental grocery if you have one nearby. If not, you can find it on the Internet. A little goes a long way, and I think it proves to be considerably less expensive than Ben Gay and the others, too. However, it does have the same obnoxious, heavy, sick room wintergreen odor of Ben Gay.
There is another topical agent that comes in several brands which contain the active ingredient "capsaicin." This is the chemical that makes hot peppers (chilis) hot. It was discovered by some brainy soul that capsaicin put into a cream and rubbed on the skin at a point above a region of pain can lessen or eliminate the pain. It works by lessening the chemical called "substance P" in the nerves, which is the culprit that carries the message of pain up our pain sensing nerves to the brain. There are downsides to this. It can be used only for relatively small areas of pain. It is useful for lessening the pain of a joint, for instance, but it would not be helpful to lessen the pain of spasticity that involves an entire leg, and it does not work for pain that comes and goes. As you might imagine, with it being the "pepper in the pepper", it is annoyingly irritating when first used. It must be applied for several days or more before the pain lessening effects take hold. Meanwhile, the capsaicin causes a burning sensation of the skin which some folks just can’t tolerate. It also must be applied four times daily, although some folks get away with three, and in either case, it can be an inconvenience to have to carry the tube around and go hoisting your pant leg up or shaking a shoe and sock at just the right time of day. On the other hand, it is readily available without prescription, it is relatively inexpensive, and for a lot of people, once and if they get through the start-up period, it works! If you have an area of localized pain, most particularly in a joint, and you wish to give it a try, make sure the skin in the area is not already injured or inflamed before you get started. You then paint a thin stripe across the limb two to four inches above the involved joint, and you repeat it four times a day until you either finds that it works, in which case you continue indefinitely, or you (wimp out and) stop using it because of the side effect.
These are the devices that might have been listed with physical therapy but which a person can get for their own use. One is the readily available vibrating power massager. These can be very useful at lessening pain due to spastic muscles. They are readily available, relatively inexpensive, require no prescription, and are fairly straightforward to operate. The other that comes to mind is a device called a "transcutaneous electric nerve stimulation" unit or "TENS unit." This device does require a doctor’s prescription and is somewhat expensive, but I have been able to get them for some of my patients with insurance coverage. One of the patients even had Medicaid as her primary insurance. If your insurance won’t cover it, you might be lucky to talk to one of the dealerships who rent them out to physical therapists. You might find you can get a used one at a reasonable price. I prescribed one for my wife last year when she was having a terrible time with neck muscle spasms and pain. We were able to get a used one for one hundred and fifty dollars, and it looks and works as if it were new. It worked well for her. Then when I developed pain, I tried it and found it helped quite a bit on days when my pain was very bad. It is battery operated. It cannot electrocute you. It comes with adhesive electrodes that you stick to the skin in the sorest areas, and you can adjust the intensity of the electrical stimulus delivered to the muscles in the area. As I had stated, either of these devices can be used by a physical therapist (or a chiropractor).
Those are the bulk of the ideas that come to my mind regarding treatment and control of pain. A number of them I have tried myself, so I can vouch for the fact that they can work for the pain associated with these conditions. Regarding some of the others, other people in our community have described having their own, similar good success. The remainder may have never been tested in our conditions, but there is no reason to suspect at first sight that they should be any less effective for the pains associated with these disorders than for pain of any other sort. I hope this proves useful as a resource for folks who have pain.
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Saturday, September 8th, 2012
We are excited that Giving Tuesday is coming up soon. It is a once a year event and is a perfect accent to the holiday season. Unbeknownst to the commercial world, the holiday season is not about who gets more for me, me, me. It is about that special feeling you get when you know you have really helped out someone you care about or love. It is knowing that the dollar you give today is going to blossom into a million dollars worth of relief from suffering for the people with HSP and PLS. Welcome to Giving Tuesday and we Thank You for your consideration.
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