Total knee replacement surgery, the second time around: learn from our experience

Nearly three years ago my husband had Total Knee Replacement (TKR) surgery. It’s drastic and major surgery, which people usually only choose when the pain from osteoarthritis becomes intolerable. And, it was not done properly so that last month it had to be re-done! Perhaps our experience can be useful to others.

Why do knees need to be replaced?

Generally because of pain and restricted motion caused by loss of cartilage (which cushions and separates the bony parts of a joint) and growth of bony “spurs”. This is labelled osteoarthritis. Other causes, like trauma, rheumatoid arthritis, and infection, account for a minority of the 300,000+ TKRs each year in the US.

As to what causes osteoarthritis, that is less understood than previously thought, when it was all blamed on “wear and tear”. The knee is the largest joint in the body, and bears the complete weight of the body at each step we take, so it is indeed subject to lots of “wear and tear”. Common-sense risk factors include types of high-stress activity in work or sports, injury, obesity, infection, stiffness from lack of activity, and age (since cartilage becomes more brittle with age). However, not all elderly people develop arthritis and some who do have no significant pain. This is why I said above that knees need to be replaced, not because of osteoarthritis, but because of pain and reduced range of motion.

The biologic factors leading to the deterioration of cartilage in osteoarthritis are not entirely understood. Many experts believe that osteoarthritis results from a genetic susceptibility that causes some biologic response to injuries to the joint, which in turn leads to progressive deterioration of cartilage. In addition, the ability to make repairs becomes progressively limited as cartilage cells age.

Although osteoarthritis generally accompanies aging, osteoarthritic cartilage is chemically different from normal aged cartilage. As chondrocytes (the cells that make up cartilage) age, they lose their ability to make repairs and produce more cartilage. This process may play an important role in the development and progression of osteoarthritis. [Emphasis mine. Source: www.healthcentral.com ]

What’s involved in Total Knee Replacement surgery?

The x-rays below, from the site of a prosthetics manufacturer,

kneeXraysB&F.jpg

show views of a knee before and after surgery. On the left, cartilage loss has caused bone-on-bone contact: very painful. Bone spurs or bits of broken bone floating around can also cause pain in the deteriorated joint. On the right, an artificial knee joint (prosthesis) is in place. (These are not x-rays of the same knee; in fact, looks to me like one’s a left leg and the other is a right leg.)

Here are some views of prostheses. To install them, the ends of the two long-bones of the leg, tibia and femur, are sawed off (removing “usually between 2 and 12 mm” according to one source) and the artificial joint is affixed with cement, screws, etc. The work involved in removing bone and attaching the prosthesis involves considerable force and power tools. Note that the knee-cap, as well as muscles and ligaments, must be carefully moved aside to install the prosthesis. [Picture sources: 1, 2, 3 ]

KneeProsthesis1.jpg

knee-bone&prosthesis.jpg

knee-implant1.jpg

There are many patented designs for artificial knee joints, and these illustrations are for general example only. Surgeons have their preferred models; many were developed by orthopedic surgeons, and those surgeons tend to prefer the ones they have an interest in. Choice of prosthesis isn’t something the patient can weigh in on, we don’t know enough, but you may want to find out if your surgeon has a financial interest in the one he is going to use; if so, perhaps a second opinion would be valuable on the pros and cons of various types as applied to your individual case. Most insurance will pay for a second opinion for major surgery.

Research continues for better, longer-lasting designs and breakthroughs are regularly announced with fanfare––but some don’t fulfill their original promise, as with teflon-lined joints which wore away much faster in practice than lab tests had predicted. You will have to rely on the experience of your surgeon.

You can see photos of the stages of knee surgery (not for the faint-hearted) here, on a prosthesis company ‘s site.

Our experience

Surgery #1, 2006

Now, back to my husband’s case. Dan had knee pain for years that ruled out unnecessary walking, as in hiking or walking for enjoyment, and interfered with sleep. There was bone on bone contact and perhaps bone spurs or growths from osteoarthritis. In August 2006 he underwent total knee replacement surgery by an established older orthopedist in our area. Afterwards, the surgeon came out to me in the waiting room and told me that the operation had taken half again as long as planned because they had “run into something unexpected”. Later, when we knew more, that remark would have much more significance to us. The “something unexpected” was apparently the result of a broken leg at age ten, that had caused greater reliance on the other leg (the one that received the TKR).

The surgery was brutal, with terrible bruising all over the leg, and post-op pain and swelling were severe. From the beginning, the prosthesis felt loose and insecure, sometimes the knee buckled, and after the post-surgical pain subsided, he was still in pain sufficient to make walking difficult. At each visit with the surgeon Dan raised these issues and was told to exercise more, and that it would get better with time. Two years on, that hadn’t happened, and the surgeon then agreed that the knee was a bit loose and offered to go back in and “put a shim in it”.

At some point after the 2006 operation, when it became apparent that it had been unsuccessful, I began to research the subject. Immediately I found that it’s common practice now to use Magnetic Resonance Imaging before TKR, rather than merely relying on x-rays. MRIs provide an exact and minutely detailed three-dimensional picture of the joint. The data can be used to make a 3-D visualization that can be rotated. This way the surgeon knows exactly what to expect; the prosthesis is customized, if necessary, beforehand; the surgery is generally shorter and the incision may even be smaller. (Other advances, such as computer-assisted orientation systems to guide the surgeon in positioning the prosthesis during surgery, may also be used.) Nothing like this was done in Dan’s case, and we didn’t know to ask about it. We know now that the original surgeon does have access to an MRI, in the hospital across the street from his office, and used it to look at Dan’s hip after the bad artificial knee began to cause a lot of pain in his hip, back, and other knee. But he didn’t use it for the knee needing replacement.

Surgery #2, 2009

Finally, after the remark about putting in a “shim”, we began to look for another surgeon. I searched online for someone who used MRIs and computerized techniques for joint replacement and who was experienced in what I learned is called “revision” (re-do) of TKRs. (Some surgeons, including the only other ones in our area, won’t touch someone else’s failures.) I found a surgeon who met these qualifications, about 4 hours drive from where we live, and we went to see him. The first thing he did was to get a full-leg digital x-ray, which surgeon #1 had never done. He showed us the x-ray, and used software to examine the precise alignment of the prosthesis. It was 7.5° out of alignment. In effect, his lower leg-bone had been detached and then put back on at a different angle from the upper leg. For over two years the first surgeon had taken no steps to examine the results of his surgery, other than feeling the knee.

We liked what we saw here, added to what we already knew about Surgeon #2’s experience, and proceeded with the preparations for a revision.

In late May Dan went through the revision surgery. Pry off the old, shave off a little more bone, affix the new.

When the surgeon met with me afterward in the waiting room, he had troubling things to report but they weren’t about what had just taken place. He told me that the prosthesis he had removed was badly installed. He actually used the word “sloppy”––and you know how rare it is for doctors to criticize one another’s work! The lower part was out of alignment both front-to-back and side-to-side; the upper part was supposed to be stabilized by the bone growing into it on all sides, but this had not taken place (he remarked that he did not use this model because sufficient bone regrowth often failed to occur). So this artificial joint had been loose and seriously mis-aligned, with every step stressing both parts of the prosthesis, the ends of the bones, the muscles/ligaments/tendons, and the other joints involved in walking (back, hip, other knee). It was clear, said the surgeon, that this had been causing Dan considerable pain, and he felt confident that the new prosthesis was going to be a great improvement.

Today is post-op day 19, and there is no comparison between the two post-op experiences. The day after the surgery they got Dan on his feet, and the first time he put his weight on the new knee he said that it felt more solid than the old one ever had. The next day he was walking the hall, slowly, and walking without hip pain for the first time in ten years. Bruising of the leg is minimal, the incision is shorter, and pain is less. The first time he was using fentanyl patches, very heavy opioid painkiller, and was still in too much pain. This time it is Tylenol-3 every 4 hours, and ultram (tramodol) occasionally when needed.

The incision is closed with superglue, covered with crossways lengths of what looks like strapping tape: no staples to distort the skin and then have to be removed. He was able to take a short shower on post-op day 5. Last time the first shower was not permitted nearly so soon and he was in so much pain he had to sit down on a plastic bench in the shower. This time, he was easily able to stand and feel secure. He’s in pain, but not nearly as much as last time, and the solidity of the knee makes it possible for him to get around the house carefully but confidently, only occasionally using his walking stick for stability (and to keep the dogs from bumping him).

Like the first time, the anesthesia was a spinal block (not general anesthesia) but the new surgeon added a femoral nerve block. As I understand it, the spinal keeps pain messages from reaching the brain during surgery; the femoral block keeps the nerves immediately affected by the surgery from registering pain which gets the nerves excited even though the brain doesn’t hear about it. It’s supposed to lessen post-op pain and it certainly seems to do that, especially for the first 24-36 hours.

There is swelling, but it’s not bad unless he keeps his leg bent too long while sitting; last time he was still mostly in bed for at least 2 weeks, and the swelling was severe from above the knee to the foot. Perhaps this is related to another difference in surgical procedure: this time a drain was placed near the incision with a receptacle attached which had to be periodically emptied of fluid, partly blood. Before the drain was removed, 1200 cc of fluid had been collected. The first surgeon did not place such a drain, the leg continued very swollen, and at the two-week check-up the surgeon had to use a syringe to remove at least 200 cc from the still very swollen knee. Doing this is risky because in raises the risk of infection, which would be a dire complication.

At this point the future looks very good for this new knee, and we are talking about being able to get out and hike with our dogs again. I still have limited energy (fibromyalgia) but more than I used to, since getting off of methadone which I took for pain.

Lessons learned

The parts of our experience that I think may be useful to everybody facing joint replacement surgery are these:

Research and ask questions. Get a second opinion.
This is major surgery which will shape your everyday life for the next decade or more. Revisions are to be avoided: not only because of pain and expense, but each surgery removes a little more bone. Don’t be afraid of getting a second opinion, even if your orthopedic surgeon seems great. Believe me, if your orthopedist were going in for brain or heart surgery, he or she would ask around, not just take the first name in the phone book! Insurance generally covers second opinions for major surgery.

Educate yourself about the surgery in general: what can go wrong, and why? what are the different methods?

In choosing a surgeon, standard advice is to find someone who has done this particular surgery a lot and does it regularly. That’s good advice, but incomplete. Our first surgeon had lots of experience and he performs knee replacements regularly. But based on results and what we’ve learned since, this fellow has not kept up with new methods: MRI’s, femoral nerve blocks, post-surgical drains, etc.

Of course nothing is better just because it is new. Some things provide an advantage even the layperson can evaluate, such as the use of MRI’s to see exactly what the joint and surrounding bone look like, so that the operation can be planned using that information. There’s no real downside for the patient in providing better information to the person doing the cutting and sawing. As for the high-tech implantable prostheses used in TKR, there’s always something new coming out, which may or may not be better. You can at least ask a surgeon how long he has been using the device he intends to implant into your body, what the failure rate is, and when and why it fails. Does it fail to be stabilized by bone growth, or do components or surfaces wear out? Does it loosen in 2 – 5 years, for whatever reason? Do particles get ground off and act like grit in a bearing?

Read up on the subject and you’ll get an idea of what to ask. Take notes on your reading and your concerns, and bring them with you; then take notes on what the doctor says. Have someone else come along to help by writing things down, reminding you of questions, and in general giving you moral support. The doctor is the expert, but your body is what’s at risk; don’t be timid about asking. In my mind, a doctor who won’t answer my questions fully, as fully as I want, doesn’t get my business.

Also ask what to expect after the surgery. Surgeon #1 kept stringing us along, telling us that things would get much better. Now we hear from others that isn’t really true, that you “know” right away. And indeed the bad job felt loose from Day 1 and never changed; the recent revision felt solid from Day 1. Certainly, telling us for 2 years that there would still be improvement, was unrealistic (charitable interpretation) and dishonest (blunt interpretation).

More information on Total Knee Replacement

There’s an encyclopedia-style summary of the procedure, risks, failures, etc. here that looked good to me, and another page on this site deals with TKR revisions (re-doing the TKR).
Wikipedia also has good information.

How to reduce the chances that you’ll need knee replacement surgery

It’s no fun, really. And you’ll get stopped by airport security for a special check, every time.

Knee_Replacement2.jpg

Photo from Wikimedia Commons.

Here’s the advice from the National Institutes of Health––

How Can People Prevent Knee Problems?

Some knee problems, such as those resulting from an accident, cannot be foreseen or prevented. However, people can prevent many knee problems by following these suggestions:

Before exercising or participating in sports, warm up by walking or riding a stationary bicycle, then do stretches. Stretching the muscles in the front of the thigh (quadriceps) and back of the thigh (hamstrings) reduces tension on the tendons and relieves pressure on the knee during activity.

Strengthen the leg muscles by doing specific exercises (for example, by walking up stairs or hills or by riding a stationary bicycle). A supervised workout with weights is another way to strengthen the leg muscles that support the knee.

Avoid sudden changes in the intensity of exercise. Increase the force or duration of activity gradually.

Wear shoes that fit properly and are in good condition. This will help maintain balance and leg alignment when walking or running. Flat feet or overpronated feet (feet that roll inward) can cause knee problems. People can often reduce some of these problems by wearing special shoe inserts (orthotics).

Maintain a healthy weight to reduce stress on the knee. Obesity increases the risk of osteoarthritis of the knee.

What Types of Exercise Are Best for People With Knee Problems?

Ideally, everyone should get three types of exercise regularly:

Range-of-motion exercises to help maintain normal joint movement and relieve stiffness.

Strengthening exercises to help keep or increase muscle strength. Keeping muscles strong with exercises – such as walking up stairs, doing leg lifts or dips, or riding a stationary bicycle – helps support and protect the knee.

Aerobic or endurance exercises to improve function of the heart and circulation and to help control weight. Weight control can be important to people who have arthritis because extra weight puts pressure on many joints. Some studies show that aerobic exercise can reduce inflammation in some joints.

If you already have knee problems, your doctor or physical therapist can help with a plan of exercise that will help the knee(s) without increasing the risk of injury or further damage. As a general rule, you should choose gentle exercises such as swimming, aquatic exercise, or walking rather than jarring exercises such as jogging or high-impact aerobics.

So there it is, same old thing: exercise and lose weight. If you really really do not want a titanium and plastic knee, losing weight is probably the best thing you can do. “Data from the first National Health and Nutrition Examination Survey (HANES I) indicated that obese women had nearly 4 times the risk of knee osteoarthritis as compared with non-obese women; for obese men, the risk was nearly 5 times greater.” Moreover, if you already have knee pain, losing even ten pounds can significantly reduce both pain and the ongoing deterioration of the knee. Being only 10 pounds overweight increases the force on the knee by 30-60 pounds with each step. You don’t need to reach your ideal weight; any reduction will help. And maybe that will be encouragement enough to keep going, slowly, losing weight and feeling better. (Thorough discussion of weight loss and osteoarthritis, here.)

Fibromyalgia, a personal overview

Preface

This is the second long post I have written about fibromyalgia (fm); the first concerned my experience with methadone, chronic pain, and fm. Click on “fibromyalgia” in the subject list at right to find it. There will be more in this series. Inevitably there will be some overlap between them, some repetition.

At the end of this post I will include links to some sites I think are useful. Some provide summaries, for us non-scientists, to current research; others explain the disease, give hints on living with fm, and track new drugs.

I was diagnosed with fibromyalgia in 1992, although the symptoms began about 1984. In 1980 I suffered a disk injury which caused chronic pain and poor sleep from then on. I worked at a full-time job that was physically active and psychologically stressful. By the time the disk problem was resolved (1996), ending the muscle spasms, the chronic pain/sleep problem had developed into fm.

The pieces I am posting here about fm are based solely on my experience, observation, and reading.

Five million patients with no treatment or cure

It’s hard to imagine today, but as recently as the late 1800’s there were still big blank spots on the map of the world, places unexplored save by their inhabitants who kept their knowledge to themselves.

Fibromyalgia is a big blank spot on the map of 21st century medicine. Its inhabitants comprise about 5% of the women over 18 in the United States and 0.5% of the men (data from 1995 study, see note 1). Since there are about 150,000,000 women in the US, and about 86% are 20 or older (this was the closest I could come, quickly, to the number of “women over 18”), then 86% x 150,000,000 = 129,000,000 and 4% x 129,000,000 = 5,160,000 women in the US with fm. For men (who may be under-diagnosed for various gender-based reasons such as stoicism or physician bias toward fm as a women’s disease), one-half of one percent = 645,000. Fibromyalgia is also diagnosed in those under 18, although they are not covered in these statistics. Studies indicate similar prevalence in other countries although there is a wide variance in results (from under 1% to over 10%) due perhaps to varying protocols and definitions, and the small size of some studies.

When I say there are no treatments, perhaps I should explain that. There are treatments that provide some relief of some symptoms for some patients. It is worth seeking out what works for you but don’t go broke doing it. I know of no medical treatment that works significantly for all pwfm. Remember that every drug has side effects; they vary from individual to individual, and what may be intolerable to one person is an acceptable trade-off to another. I tried Lyrica, the first drug approved specifically for fibromyalgia, and had two problems with it: by the time it began to lessen the pain, it was too sedating; and it caused unacceptable weight gain. Also, being a new drug, it was quite expensive. I hope others have better luck with it.

Current research is very promising as far as symptomatic relief and sleep improvement. Check out the sites listed at the end once in a while to keep up on things.

There is no cure. Beware of anyone making such claims. When you read of Jane Doe who has had a complete recovery with Dr. Quack’s treatment, remember: it may be she never had fm, or had only a very mild case, or is suffering from self-delusions (as in faith healing), or maybe (gasp!) she does not even exist.

What are the symptoms?

The official diagnostic symptoms are widespread musculoskeletal pain, severe fatigue, and disturbed sleep, in the absence of another provable explanation (see note 2).

This is a typical description of the condition itself:

Fibromyalgia (FM) is a chronic pain disorder characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue, and sleep disturbances. The most common sites of pain include the neck, back, shoulders, pelvic girdle, and hands, but any body part can be affected. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time. [National Fibromyalgia Association]

Here’s a list of common symptoms that are considered part of fm:

Severe fatigue

Poor sleep

Stiffness

Poor memory

Headaches

Restless legs

Irritable bowel

Overactive bladder

Depression

Exercise intolerance

Low back pain

Numbness and tingling

Painful periods

Muscle spasms

Jaw pain [TMJ]

Excessive tenderness

Sensitivity to bright lights

Sensitivity to loud noise

Sensitivity to perfumes

Sensitivity to weather changes

Excessive anxiety

Poor balance

Cognitive difficulties are very common: poor concentration, lack of memory, inability to locate everyday words when speaking, general confusion.

The group of pwfm is extremely varied. Some individuals have severe fm, others have milder cases. Some can work, others can’t. And any one person feels better and worse, sometimes in response to exertion or stress or the weather, sometimes due to no discernible cause. In addition, there are other very serious conditions sometimes found along with fm, such as lupus–but there’s no evidence that fm causes these other conditions.

Fibromyalgia and sleep

Sleep, for those with fibromyalgia, is officially described as “non-restorative”. This word feels inhuman and bloodless but it is accurate. People with fibromyalgia (hereafter pwfm) commonly describe their state upon awakening in the morning, as something like “feeling as if I’ve been hit by a Mack truck.” Before I heard this, before I was diagnosed, I used to say I felt as if I had been forced to run up a mountain all night and then kicked and rolled all the way back down.

The lack of restorative sleep, stage 4 sleep, may in itself be sufficient to cause the other primary symptoms which patients report: never-ending fatigue, of course, as well as overall muscular pain in which a pat can feel like a slap, inability to concentrate or remember, confusion.

Early on, a researcher (H. Moldovsky, 1995) reproduced the major symptoms of fibromyalgia in healthy young volunteers–males, as I recall–simply by depriving them of sleep. Parents of colicky infants could have probably saved him the trouble of performing the study. Having the sleep/fm connexion established, however, has not led to any substantial advances in treatment, let alone cure or prevention. No one can figure out exactly why we begin to sink into stage 4 sleep, and then are pushed back up into other less deep levels of sleep.

Without exception (as far as I know) pharmaceutical sleep aids do not promote a normal level of the stage 4 sleep (deep, slow-wave, non-REM sleep) which pwfm lack. It is certainly preferable to be unconscious in bed at night, instead of up reading in the living room for 4 or 5 hours. But sleep aided by pills doesn’t provide the rested feeling of a normal night’s sleep.

It is important not to oversimplify the association of disturbed sleep with fm. By which I mean, thinking that if only we could fix the sleep somehow, everything else would fall into place. Here are my reasons:

a) sleep may be the proximate cause of most or all of the symptoms, but it in turn may be at the end of a long chain of other things that have gone wrong, a cascade of causes.

b) Sleep, as a process, is very complicated and powerful: not only are there various stages or depths of sleep, but it interacts profoundly with the endocrine system. I won’t even add any other points of interaction with sleep, because once the endocrine system enters into the discussion as far as I can tell it is like 6 degrees of separation: now everything is connected with everything else, AND (unlike 6 degrees of separation) interacting and modifying everything else. Like a room full of kindergartners racing around all hyped up on sugary cupcakes, each one affects all the others as well as the total state of chaos. If we tie all the kindergartners to their chairs, have we ‘fixed’ this situation? If we achieve or impose ‘normal’ structures of sleep, have we ‘fixed’ fibromyalgia? There may be abnormalities in the sleep processes of pwfm that we can’t even detect, at a biochemical level. That said, obviously pwfm would be lining up in the snow to get the first tickets for that experimental ‘normal’ sleep!

PWFM: Our bodies are working differently

Many detailed studies have found specific physiological/biochemical ways in which pwfm vary from the norm: a substance that helps carry pain messages is found in abnormally high levels in their cerebro-spinal fluid; their threshold for pain is lower than that of other people; they suffer from a sleep disorder in which stage 4 sleep (most restorative stage of sleep) is continually disrupted; high levels of a nitric oxide-producing enzyme were documented by one research team to help explain why patients have exercise intolerance; excessive levels of oxidative chemicals that irritate the tissues (perhaps causing some of the constant overall pain) were found in the connective tissues in the tiny space between the muscle fibers; neurotransmitter disorders exist (serotonin and/or dopamine); atypical brain activity occurs in response to pain and other stimuli; and on and on. (For a partial list of such findings see this page on the excellent Fibromyalgia Network site.)

But, surprisingly, with all this detailed knowledge we seem no closer to real treatment or (in my dreams!) a cure. Is any of these abnormalities the “cause” of fm? For most, it doesn’t seem likely; filtering out the excess pain transmitter (Substance P ) from my cerebrospinal fluid, in some science fiction method not yet discovered, probably would not work. Whatever is causing my body to make or accumulate extra Substance P would just restore what it sees as my “norm”. Looking at this large and varied collection of anomalies, one may be the prime mover, and the rest secondary. Or, it is quite possible that we’ve not even glimpsed the “first domino” yet.

As far as I know, none of these differences from the norm are likely to become part of the process of diagnosing fm. Most are invasive and expensive, and not all of these variances would be found in all fm patients. Their value lies in directing further research, and in reassuring us that there is a physical basis for what we experience.

There does appear to be some genetic predisposition to fibromyalgia: diagnosis in mother/daughter, sister/sister, etc., is more common than is statistically likely. Now that genetic analysis has been made so much faster, research is going on to find out genes that may be associated with fm. A great development, but don’t hold your breath waiting for it to help you. Individual cases of fm vary greatly in severity and symptom profile, so this seems like it will be a complicated puzzle to solve even when/if gene differences are found.

Psychological aspects of fm

Pwfm, like many other chronic disease sufferers, are sometimes treated dismissively by doctors and friends/acquaintances. The disease is unfamiliar, non-fatal, rarely puts anyone in the hospital, and invisible as far as gross physical signs. “But you don’t look sick!” we hear, and I suppose it is meant to be encouraging but it comes across as suspicion of malingering, or at least denial of how crappy we really do feel.

Speak of a heart attack, rheumatoid arthtritis, diabetes, blindness, and you’ll rarely be greeted with “Oh, yes, I had that last week, I know just how you feel, but you’ll be fine with a good night’s sleep!” But fatigue, poor memory, achy body–everyone’s experienced this, and so they think they really do understand what we, and others with invisible chronic conditions, are enduring. And their understanding is generally based on experience which was mild, like the slight dulling of memory we all experience with age; or on something which improved quickly, like pain from over-exertion. I think it is better to say little about it, in most cases. Let your family know why your abilities are not the same as they were, and ask for their help, but otherwise keep your mentions minimal.

If you must raise the subject at your job, to ask for change to part-time work, or some other adjustment at work (provide seating for you, use plastic wheelbarrows instead of steel-binned ones, provide more varied work) choose your time and place, and be prepared with a letter from your doctor about your limits as to lifting, standing, etc. Present the supervisor with solutions enabling you to continue, don’t present yourself as a problem for the supervisor to solve. He/she has one easy way to do that! [Being quite unable to work is a different situation, one which I will talk about in a future post.]

Depression is not uncommon among pwfm and this has been used against us, as proof that it is all in our heads, perhaps even some sort of not-quite-conscious choice to be sick in order to get disability or attention. Anyone who could step into the world we experience, for a week or so, would see how untenable this idea is.

Before I was diagnosed, when I thought it was just stress, or even lack of exercise, I was forced to go through a process that I likened to throwing everything possible overboard off a sinking ship. In terms of one’s life, this means everything except job and necessary life-maintenance. Nothing fun–you’re way too tired to take in a movie, do some baking, play with kids or dogs, have fun with your dearest one. Concentration and memory decline sharply, further limiting one’s activities.

I already worked a fairly physical job but thinking I needed more exercise I got a puppy so I would have to walk and be active more. How did this work? Well, I was able to train her to take off my socks at night when I got home after work and took off my boots. She’d pull them off and then hand them to me, saving me two painful bending actions. [I could have asked my dear husband to do this, and he would have done so willingly, but I resisted things that would have made me feel more damaged than I already felt.] But the more exercise part was not helpful. Still, she was a lovely dog and worth all the extra exercise.

Anyway, depression seems like a very normal reaction for someone who has thrown overboard nearly all the enjoyable parts of life, is exhausted and in pain all the time, and has no hope for improvement (as you do after a terrible bout of the flu, which brings a similar exhaustion though not the overall pain).

If I’ve just lost my entire beloved family in a car crash, nobody except a reporter is going to ask me how I feel; anybody with a heart knows how I must feel and accepts it as entirely normal. This is depressive feeling arising from circumstances. Fortunately, our minds have ways to lessen, over time, the depression that results from the losses common to human life. Deep sadness and regret remain, but feeling a paralyzing loss of life’s significance, of its savor, gradually lessens with the passing of months or years for most people.

However, humans haven’t evolved ways to mute the depression from ongoing life-robbing conditions. Being a quadraplegic, being in a concentration camp, having severe diseases such as lupus, PTSD, or rheumatoid arthritis, these are a daily assault on the core of one’s being and one’s desire to live. Naturally, people get depressed, whether they try to hide it or not. [Please note that I am not setting up any comparisons of suffering here! I’m not saying x is like y or a is worse than b.)

There is considerable research to support the assertion that depression does not precede, and therefore perhaps cause, fibromyalgia: for instance, pwfm are no more likely than others to have been depressed prior to having the symptoms of fm; the degree of depression has no quantitative relation to the degree of pain; and chronic pain sufferers as a group, regardless of cause of pain, have a high rate of depression. I cite only one study (see note 3) but there are others.

A few practical recommendations

Another reason that depression and fibromyalgia have gotten connected in the minds of doctors is that, early on, it was found that certain anti-depressants seemed to relieve some of the pain of fm. Sometimes they do help, sometimes not. Maybe it’s placebo effect, maybe not. If you are offered anti-depressants for the relief of symptoms other than depression, be sure to discuss with the doctor what happens if this doesn’t provide relief, or if the side-effects (often weight gain is a potential side effect, and that makes you more tired) are intolerable. Make another appointment for evaluation of the treatment.

You must find a doctor who will work with you long-term, not one who writes a prescription and then feels his/her duty is done. Accept that fm, more than most conditions, demands that the patient take a very active role. A well-read fm patient is often more familiar with the disease and available treatments than her doctor is. That has been my experience and I have heard/read it from many others.

Find a doctor who can accept new information from a patient; bring in articles from medical or fm journals (not just news reports); and be diplomatic but firm if you really want to try something (or really don’t want to try something the doctor is pressing upon you). Learn from your doctor, ask questions. Educate yourself, learn coping mechanisms, stay away from anything that claims to “cure” this condition. When a cure arrives, believe me, we’ll all hear about it from many authoritative sources, not just from a TV report or the individual champions of a new herb or drug!

And as with any chronic condition, it is extremely useful to keep some sort of a daily journal: doctors and insurance companies really like record-keeping, and it will help you understand, for example, whether a given treatment is not helping or if the problem is that you had house-guests one week and worked overtime the next. No long entries needed, better two lines every day than two pages once a week. Rate your pain, your feeling of ‘functionality’, and your fatigue, from 1-10 (average for the day); note unusual events that could affect how you feel; note any variations in sleep such as getting to bed late, extra trouble sleeping, too painful to sleep. Okay, maybe that makes 3 lines, but if you can make yourself do it you will find it invaluable in dealing with your doctor, with any possible disability situation, and even with your fibromyalgia: it will give you a small feeling of control in that you can look for connexions, for cause and effect, for trends.

True clichés

Don’t give up. Your ailment is not your life. Don’t let it consume you.

Every person on this planet lives his/her life within some sort of limitations: intellect, means, education, health, social strictures or upheaval, and so on. If fm is one of your limitations, take it on. (The other choice is…?) Be flexible and smart and keep fine-tuning what makes you feel better (or less bad). Seek out the joys of life. Be as active as you can be physically and mentally, and don’t become self-absorbed. When you have a really bad day remember it won’t last forever (you may want to write this on the wall).

Notes

1.Wolfe, F et al. Prevalence of characteristics of fibromyalgia in the general population. Arthritis and Rheumatism 38:19-28, 1995.

2. The formal diagnostic criteria, established in 1990 by the American College of Rheumatology, are:

1. A history of widespread pain in all four quadrants of the body for a minimum duration of three months.

2. Pain in at least 11 of 18 designated tender points when the doctor applies four kilograms of pressure.

3. Giesecke T, Gracely RH, Williams DA, et al. The relationship between depression, clinical pain, and experimental pain in a chronic pain cohort. Arthritis Rheum 2005; 52:1577-1584

Links

The Fibromyalgia Research Blog

The Fibromalgia Information Foundation Information is provided by clinicians and researchers at Oregon Health & Science University in Portland, Oregon, USA and invited specialists from other locations. OHSU has an excellent clinic and research effort dedicated to fm (based on my personal experience).

The Fibromyalgia Network Also publishes the quarterly Fibromyalgia Network Journal; I recommend it. You can sample articles online to see if it is for you. Try to get your public library to add it.

The American Fibromyalgia Syndrome Association, Inc. (directly funds research)

The National Fibromyalgia Association

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Adornment to a Roman legionary’s horse harness; copper alloy with glass mosaic. First century AD? Source.