My Wife's Experience With Fibromyalgia

      For my wife and me, experience with an understanding of the nature of fibromyalgia and the many facets that surround it began with an accident my wife sustained in 1994 at the apartment house where we lived. Just dealing with the issues that attend finding healing from fibromyalgia or a way to handle it subjects an individual to a minefield of misrepresentation, misinformation, abuse and betrayal from many sources. When you add the involvement of legal proceedings, you find yourself beset with hordes of enemies. A nutshell version of my wife's experiences would be bigger than an orchard.

      The accident involved my wife slipping on some dry snow, during a winter day at least 5 degrees below zero, trying to make her way down a stairway that hadn't been swept clean by maintenance for a day. We lived on the third floor of an apartment building which had an exposed series of wood terraces in the back, connected by a wood stairway. The rear of the building is where the cars were parked. There was "dry snow" on every step of the staircase; the steps themselves were pressure treated wood, so they had little traction; and there was no handrail, just a foot wide plank of wood there more for decoration and convincing any untrained "inspector" they sent by to examine the place. My wife slid down a twenty step flight, landing at the bottom and falling forward, landing on her hand and hitting her chin. After a full series of x-rays at the local hospital, it was announced that she had, officially, sustained a “comminuted fracture of the left distal radius”, in other words, the forearm bone, of her left arm. Nothing else was acknowledged.

      The immediate concern at the hospital was the fracture. No other conditions were described.

      It was at that moment, in that situation, that we learned one of the rules of insurance they don't acknowledge widely. That medical insurance will not pay unless “the most conservative” method of treatment is tried first. “The most conservative” method involved setting my wife's arm bones and placing them in a cast like “splint”.

      She remained in the splint for a month. Then the day came to remove it. She went to the orthopedist who applied it, he cut the splint, and the bone immediately refractured.

      The pain and shock was so bad, she got nauseous and passed out.

      With the “most conservative” methodology having failed, she was rushed to the hospital for more aggressive treatment, application of an external fixator.

      The fixator took a couple of months to do its work. Obviously, there was discomfort still for my wife. In fact, she began to experience aches and pains in many parts of her body. There particularly were severe pains in her legs, knees and low back. She consulted her doctor, what general opinion led her to believe was the only one she needed for a doctor, the orthopedist who prescribed her the splint that allowed her arm to refracture.

      The orthopedist never said anything different, the pains will “clear up eventually”. My wife was prescribed Relafen.

      The fixator was finally removed, but the pains continued. And the orthopedist continued to say that they would “clear up eventually”. My wife tried to address the excruciating pains in her legs and the orthopedist showed her some x-rays of perfectly normal knees and said nothing was wrong. The orthopedist prescribed treatment for my wife which consisted of ultrasonic waves applied to her arm through a water bath.

      Meanwhile, we tried to look into filing suit for the injury.

      Our first attorney almost let the statute of limitations lapse on the suit without doing a single thing.   There were only a couple of days left to the statute when we checked in and found that precisely nothing had been done.

      Our second attorney deposed only the wife of one of the lesser owners of the apartment building. She didn't know anything because she never had any involvement with the building. He didn't depose the maintenance man who was charged with cleaning off the stairs to find out why they hadn't been cleaned.

      No sooner was one of the lesser owners of the building deposed than the major owner sold the building. The new owners sent us a letter announcing the change in the rent three days before the change was scheduled to take effect. We didn't even know there was a change until we received the letter. As a result, we didn't pay the new rent when it was due. They ordered us evicted.

      We moved to another county.

      We dismissed our second attorney and tried a third.

      The third attorney introduced us to the term “fibromyalgia” to describe my wife's discomfort. He described fibvromyalgia as being associated with accidents, that many people suffer from it, but that no cause was known. He recommended that my wife get a rheumatologist. The rheumatologist confirmed the diagnosis of fibromyalgia and he prescribed elavil and Daypro, the elavil to go to sleep at night and the Daypro to get up in the morning. There were a number of painkillers and muscle relaxers prescribed, as well, including Flexoril and Percocet, on an “as needed” basis.

      The excruciating leg pains continued, though. It was at the deposition the third attorney conducted, with pictures of the stairway, that she remembered how she had gone down the steps, essentially skipping steps, remaining upright, but landing foot first on each step, until, finally, she crashed at the bottom.

      At that point, my wife went back to the orthopedist and asked to have her ankles x-rayed. The orthopedist set up an appointment, but, the night before the x-ray, he called up, recommending that my wife not come to his office the next day, saying that the x-rays would not help, literally begging her not to go through with getting an x-ray of her ankles and practically crying as he said it. As a result, my wife decided not to have the x-ray. As a “substitute” for the x-ray, the orthopedist sent my wife for an EMG. We were told it indicated a “lumbar radiculopathy”, but no one explained to us even what that meant, how if was associated with the pains my wife was feeling or how to handle them.

      We went to a different doctor, this time, a different orthopedist, for x-rays and MRI's. He said they couldn't find anything wrong with my wife's legs. On the day of a scheduled appointment, it should be mentioned, the doctor's office doors were locked. There was no answer when we knocked, but there were voices and shadows moving hurriedly back and forth that could be seen through the door jamb.

      All this time, my wife could barely walk or stand for more than a minute or two.

      My wife went to another doctor, at least for pain management of the legs, since no one else was doing anything about it. This doctor was an acupuncturist. He administered acupuncture treatments and prescribed pain killers, physical therapy and a TENS unit. They helped slightly, but only modestly.

When, finally, it came time to settle the case, we decided to simply let it be dismissed. No one had answered or even addressed the issue of the leg pains, not even our attorney, and my wife did not want to settle for an amount that would be too small for whatever problem she had with her legs.

Since there was nobody who would directly address the pains in my wife's legs, we decided to try to handle it ourselves. I would manually rotate her ankles every night, trying to deal with the strong urge my wife felt to have her ankles twisted.

      Then, about a year-and-a-half after we had the case dismissed, my wife tripped over my boots in the living room and said she heard a loud crack. We were afraid that something even worse had happened, but, when she tried to stand up, she found that the excruciating right leg pain had disappeared. She still had severe pain in the left leg, so I continued to rotate that ankle each night. Then, about a month after the first incident, my wife stepped in a pothole and heard a loud crack in the other ankle. Promptly, her pain in the left leg was now gone. She still had weakness in the legs and difficulty walking or standing for short periods, but they felt much better than they had for a long time.

      Her ankles had been subluxated and the displacement had caused pain throughout all the rest of the muscles in her legs. But nobody looked, nobody diagnosed what the situation was , they knew what it was, but they weren't going to do anything about it.

      Problems like trigger point pain all over her body continued, though, along with muscle stiffness, muscle aches everywhere, lethargy, trouble sleeping, some of the effect they often call “fibro fog”, chronic fatigue, never feeling rested, low back pain, pain in the knees, some gastrointestinal problems, blood pressure being extremely high, neuralgia, stiff necks, headaches, and, still, some pains and weakness in her legs, although they were a lot better after the ankles were fixed into place.

      When we consulted initially the rheumatologist, he could only agree that it was fibromyalgia, but not offer any kind of cure. He described it as “mostly a woman's disease”, saying “mostly women get it”.

      At about this same time, we found that my wife could have filed for disability after the accident, but not even our attorneys told us about it.

      My wife was praying to St. Bernadette for an answer, watching “Song of Bernadette” every night on the VCR, when, ten years after the accident, she saw an ad in the newspaper that said “Fibromyalgia?” and gave an offer for a free consultation. It was a chiropractor. My wife decided she had nothing to lose so she visited him.

      The thermal scan indicated that the temperature of her muscles about her neck, in the area of C5-6, was at maximum that the machine could register. The chiropractor then took an x-ray of her neck and informed her that she had a cervical disk compression at C5-6.

      My wife began treatment immediately. He cracked her neck and it made a giant pop that even I could hear from across the room. It was like a giant explosion of gas buildup. My wife said she immediately felt 80% better, like someone had “let her out of her captivity”. After that first treatment, my wife could move her head freely, axially and sagitally, left and right and up and down. My wife also told him about the back pain and knee pain and he said that would disappear after several months of traction.

      The chiropractor utilized the neck cracking a few more times in subsequent treatments, but we soon found that that didn't need repeating. My wife was helped more by adjustments and decompression traction in the doctor's office. At this point, my wife had stopped taking medication. He said it would take a year for the trigger point pains to go away, but many of the other symptoms of fibromyalgia were already diminishing.

      With the cause of her symptoms finally revealed, and the potential finally available to get a valid and workable estimate of the impact on her system and what it would cost, we tried to get the case reinstated. We had simply dismissed it because we were not in a position to mount a sufficient case, but it could be begun again. But, although we contacted a dozen attorneys with the information about the cause of my wife's pains, every single last one of them refused to take our case.

      Then our chiropractor announced he was moving away.

      My wife knew what her problem was and how to help it, but, now, she was left without someone to treat her.

      My wife went to another chiropractor, but he never took any x-rays, he only threw her around on the table and asked her, “Who dropped you on your head?”. Not all chiropractors are good, you do have to be careful screening them. But she was determined to find a good one. Finally, my wife decided to screen chiropractors before she went to them, to find out, for example, if they took x-rays and administered spinal decompression. After speaking to a few on the phone, she made an appointment for a consultation with another chiropractor. This chiropractor provided everything she needed and more. He would not administer any treatment until he took a full x-ray of the complete spine. He said, from the x-rays he took, that her disk was “sitting right on her spinal column” and he frankly didn't know how she could have walked into his office.

      He x-rayed her entire spine, consulted with her for an hour, showed her the x-rays, and explained his treatment plan. He performed cranial adjustment, other adjustments and spinal decompression. Evidently, your head is supposed to sit on your shoulders in a very precise manner, and if it's out of position even one centimeter, it can cause stiff neck and stiff shoulders and limitation in your range of motion. Also, the back of your neck is supposed to have an “S” curve. If that curve is missing and your neck is straight, because of atrophy, it can cause a serious problem, what's called “forward head position”, which can cause further disk degeneration. He provided a home traction device, comprised of a roll to put behind her neck, a chin strap and a three pound weight, to hang over the side of the bed for eight minutes every night. This kept her disks decompressed. He explained that, when you have a disk problem, it's a matter of constant maintenance to keep the symptoms from progressing and alleviating symptoms.

      This was in 2005, 11 years after the accident, when we finally found out about the disk problem. Finally, everything made sense, everyone working to keep the information on my wife's neck from us. They had the x-rays, they knew, but they wouldn't admit it. They constantly said it was something else; they refused to look where asked; they prescribed treatments that had nothing to do with the actual problem, since a treatment that worked would point out what the real problem was; and they provided medication to try to mask the symptoms, to keep my wife from following up and trying to get an answer!

      I should mention that, between about 1999 and 2013, my wife had to go to the oral surgeon twice to have an abscess on her lower jaw surgically treated, the spot that she had hit landing at the bottom of the stairs. She complained early on about her feeling numbness in her tongue, and each time, the doctor said it was nothing, just nerves.

      People every day sustain whiplash type injuries, from an auto accident or a fall down accident, and they have no idea what it means. They don't understand what's causing their neck pain, shoulder pain, back pain. If they are told they have a herniated disk, they don't have it explained to them what it is, how it can affect them, and how it can be treated.

      Fibromyalgia is not a disease, it's not an illness, it's not a life sentence. It's a syndrome, a collection of symptoms that come from some cause. The fibromyalgia that my wife experienced came from her disk problem. In fact, this seems to be the sole cause of all fibromyalgia. There are those who try to blame other diseases and even medication. And, yes, few years ago, despite feeling better from the chiropractic treatments, my wife decided to take an elavil one night, just for some deep sleep. When she woke up, she found she had the same trigger point ailments that had been gone after treating with her new chiropractor back. It took her a year to get rid of them again! And some pain medications like Motrin will cause you GI problems and difficulty sleeping. Don't expect that medications will necessarily make you feel better at all. And some diseases, like diabetes, will give you some symptoms of fibrolmyalgia. But fibrolmyalgia itself is an entire collection of specific symptoms! If you don't have a majority of them, you don't have fibromyalgia! And if you have a majority of the symptoms, you have it! In a very rare number of cases, you might have several independent conditions simultaneously whose symptoms add up to fibromyalgia, but is it worth the gamble that you might not get well and might even end up harming yourself! Remember, many treatments or medications taken for diseases you don't have have damage you or poison you! And treating yourself for anything other than fibromyalgia will not cure the fibromyalgia.

      And especially since dealing with a compressed disk through a chiropractor is the most modest method of treatment there is, completely non-invasive, it makes sense to look at this first before deciding to take powerful poisons, have your blood flushed out or have spinal fusion surgery which can leave your back with so little flexibility you can't even clean yourself after going to the bathroom and someone has to do it for you!

      After three months of treatment with her chiropractor, my wife felt 70% better than when she arrived. He blood pressure dropped from 180 to about normal. Depending on how long your symptoms are allowed to exist, it could take years to get rid of every symptom. It was only a few years ago, after Hurricane Sandy, that my wife got rid of one of her worst symptoms, the night leg pains. She had to massage her legs with a Homedics massager for the last twelve years just to be able to get to sleep. This is why early treatment is so critical, so your symptoms do not exacerbate to the point where you're completely incapacitated. People must understand that a herniated disk is not a death sentence, but it does take a lifetime of maintenance to have a good quality of life. My wife has seen this chiropractor since 2005 and she receives maintenance as needed. She tries to get maintenance every week, to keep her symptoms at a minimum. There are some weeks where she doesn't have to go at all, because she's feeling pretty normal. My wife takes no medication, is working full time and sleeps well through the night.

      The prevalent symptoms you can experience if you let yourself go, as my wife did for up to ten years, are

pain behind the eye;

eye twitching;

tingling above the upper lip, the kind that travels very rapidly and lasts for just a second;

      frequent choking on saliva or food, tightness of the throat;

muscles spasms and stiffness throughout the body, charley horses in the legs and feet

when stretching upon waking;

numbness in the low back and extremities after sitting a short period;

neuralgia, shooting pains in head, ears or face;

chronic migraine headaches;

pins and needles in extremities;

sensation of glass or bee stings in your extremities;

sciatica, pain down the back of the legs;

carpal tunnel syndrome;

overall aches and pains throughout the body;

GI symptoms, irritable bowel, gas, bloating, diarrhea, nausea, severe stomach cramping,

      acid reflux, severe urgency to get to the bathroom, frequent urination sensation;

low back pain, especially while sleeping, turning over in bed, reclining on your back,

      bending;

severe knee pain, sitting in a chair, bending, climbing stairs or walking up or down an

      incline;

ankle, knee, joint and leg pain, swelling and tightness, pressure on your feet, if you have

      your shoes on for long periods;

chronic fatigue;

leg weakness, one of the most serious, causing limitation on the amount of time you can

      stand up or walk around;

severe leg pains upon retiring in bed at night;

high blood pressure;

lethargy;

depression;

anxiety, sleeplessness;

sensitivity to light, noise, temperature changes and extremes;

very tight knots in the trapezius muscles, the upper back, shoulder blades;

      pain causing stiff neck and shoulders;

limitation of motion in neck and shoulders, inability to look sideways and up and down;

diminishment of eyesight, can affect the optic nerve;

hand/eye coordination diminished, dropping things, balance and coordination problems,

      diminshment of cognitive abilities, ability to concentrate and focus;

weakness of the voice after extreme fatigue;

tightness of scalp, feeling the scalp being stretched over the skull;

leg shortening.

      My wife believes that Advil, Motrin and Aleve can cause a lot of indigestion, other GI symptoms and nervousness. It is much better to try to do without.

      When my wife weaned herself off the anti-depressants, it took about a year for all the anxiety and jumpiness to finally dissipate.

      This is a nutshell of my wife's experiences with fibromyalgia.

      In the future, we will provide information about how a herniated disk can cause all the symptoms of fibromyalgia and how to deal with it.