My Painful Leg and Back Condition
Updated March 7, 2012
By William D. Gwinn, Jr.
This condition began (in earnest) when I was 39 years old, in late 1995. My left knee was slightly painful and stiff on occasion. This worsened until about 2003 with greater stiffness, tightness, pain and spasms. Today there are very few parts of my body which are NOT affected. My walking is greatly impaired, requiring small steps, the constant use of crutches or two canes. Any ambulation increases the chance of more pain. The effect on my upper extremities, however, is minimal. My back is probably a different condition than my extremities. In my legs (all parts except the thighs), it is deemed to be an "auto-immune" condition, i.e., the pain in the shins, knees and feet (the focal points), for example, never goes away. This auto-immune condition may be synovitus (per Dr. Carlos Martinez), or something similar. It certainly involves inflammation which I can feel at all times, though it does vary in intensity.
Whenever I turn my knees just the wrong way during weight bearing or even without weight bearing, sharp pain can occur just below the patella or in the bursa areas. This pain occurs on a daily basis, multiple times each day. If I'm sitting on a chair or couch and I cross my legs the way a man does, this twisting action on one knee can mess me up a lot, causing pain that lasts for an hour or more.
If I try to walk too much, I will get pain in my legs or back. If I don't walk enough (a minimal amount) I can get spasms in my calves, knees, feet, or back. As to what amount of walking is enough or too much depends on the day and on how my body feels. I need to beware of letting my muscles atrophy, so I am always looking for ways to exercise, but not finding much that doesn't lead to pain. Swimming is probably the best form of exercise for me.
Most everything from the knees down is very tender to the touch all the time. In other words, if I bump my toes on something or, like at work, I often bump my knee on the (albeit rounded) edge of my desk, whatever body part is bumped will hurt like crazy for five minutes or so. This is about ten times the usual amount of pain you should have for bumping yourself. The shins (tibias) are perhaps the most dramatic example of being hurt easily by being bumped.
The only mechanical diagnosis in seven years which revealed anything significant was a bone scan in May of 2001 which identified "Shin Splints" (bilateral). It was ordered by Dr. Robert Meriwether, a rheumatologist in Claremont. When he got the results ("shin splints"), he directed me to see an orthopedic specialist, as he felt my condition was not rheumatological. In retrospect, this decision by the rheumatologist (in my view) accomplished nothing except to waste time.
The orthopedic doctor he sent me too (Bert Mandelbaum of Santa Monica) seemed to forget that I was referred by a rheumatologist, for when he had completed his examination of my legs, he stated that I should see a rheumatologist. He was surprised when I reminded him that's who sent me. This "go see someone else" routine, occurred to me several times with several specialists over the years. Dr. Mandelbaum did say that it's unlikely that I really have "Shin Splints" because it had been hurting already for about two years. Even today, if you were to send me for another bone scan of my tibias, you would probably elicit the same "Shin Splints" result. Dr. Mandelbaum did have MRIs done on my knees which did not reveal anything significant, except some inflammation.
In late 2000 and into 2001, I went on state disability and left my previous job which was too physical. I found a less physical-related job in 2001. For the first two years at this new job, I used a cane and kept wearing knee braces all day, but the knee pain and back pain accumulated or increased.
The feet also feel much pain and several podiatrists have stated that I have bilateral Plantar Faciitis. The truth is that whatever is bothering my knees and shins is also affecting my feet. Even the ankles are sometimes very painful and my achilles are usually tight.
Sometimes (usually in the middle of the night, about once a month) I will have severe pain (spasms) in the left or right calf or tibia area or the feet or knees. Usually a heat pad resolves these. Several times these night spasms have been like a cramp in the arch area of either foot, with devastating pain. These cramps/ spasms usually have residual effects that last up to three days, feeling like they could happen again, but usually don't, not right away.
I go swimming whenever I can to keep my limbs active. I must keep moving and stay limber and try to retain a semblance of muscle tone. I also bought an adult Tricycle in 2006 with 5 speeds to help me get some exercise. The Trike works better than a treadmill which I've tried to use (not successfully) as of about 2005. After a lite 15 minute Trike ride around the neighborhood, my ability to walk is slightly improved for about an hour, then it goes back to the normal difficulties again. Stretching exercises help a lot, namely the calves. If I'm driving a long distance, I need to stop the car and stretch and walk a little about once an hour or else I can get spasms (throbbing pains in my legs or back). About four attempts at physical therapy have been futile, due to the auto-immune nature of my problem, and perhaps because the therapists took me farther than my body was able to go.
In 2003, my spine and neck were examined in depth by Dr. Mark Spoonamore of the USC Center for Spinal Surgery by way of three MRIs (spinal stenosis ruled out but nothing significant was found). Also in 2003, a neurological exam was performed on both legs by Dr. Said Beydoum at USC University Hospital. None of these tests revealed anything remarkable.
One orthopedic doctor in 1999 (Paul Bouz) told me (upon a visual exam), "You have arthritis." But he was not able to be more specific. You see, my auto-immune disorder, though it is not arthritis, is similar to it and is able to fool some doctors. However, I've been blood-tested "negative" for arthritis about eight times. The "synovitus" can present in a similar fashion to arthritis.
The overall condition deteriorated by February of 2003 to the point where walking became so painful that I decided to start using a mobility scooter and purchased one. Happily, my Blue Shield insurance reimbursed me for it and has stood with me for mobility devices ever since, assisting me with the purchase, repair, supplying batteries to keep me mobile on the scooter(s). Happily, since that point, my legs have not gotten worse, thanks probably to getting some rest by use of the scooter.
In March of 2003, one doctor gave what I believe to be the most correct diagnosis up to that point. Dr. Christopher Chalian of Garey Orthopedic stated as a diagnosis: "...chronic bilateral lower leg pain of unknown etiology." This diagnosis omits reference to my upper body also being involved; perhaps the reason for that is that Dr. Chalian does not treat the back... only the legs.
In May of 2003, I saw a rheumatologist named David Silver in Beverly Hills. He prescribed Plaquenil [generic: hydroxychloroquine] 400 mg. per day. Plaquenil is mostly an anti-Malaria drug, but is sometimes indicated for Arthritis. He wanted to see if it would work for me. I began taking this on July 1. An opthamalogist monitored my eyes. By around September 1, I was supposed to know if Plaquenil was going to help or not. The two months elapsed, and Plaquenil effected no change.
In 2005, an MRI of my brain was performed by Dr. Mohsen Ali of San Dimas.
I needed help with my back pain as well, so in February of 2008. I went to see a pain specialist. He felt that the spasms that happen in my legs or arms are originating in my lower back, but unknown as to why. By the time I first saw him, the pain in my back had increased dramatically with spasms on the left, the right, the lower part, back to the left, etc... moving around every few hours or days, and seldom failing to hurt on any given day. In both 2008 and 2009, he performed "lumbar facet injections" which helped my back tremendously. The improvement lasted about five months each time. In July of 2010, this same doctor performed a different procedure on my lower left back which might be more promising in terms of relief... "lumbar facet radiofrequency."
From 2008, the diagnosis of the pain was lumbar spondylosis (721.3) and chronic knee pain (719.46). After thirteen years of seeing more than 60 doctors, half of them specialists (and most of them at a loss to venture a diagnosis), I am happy to have a semblance of a diagnosis. Meanwhile, ice packs seem to be the best treatment for my back pain or leg pain when it gets bad.
In December of 2009 a lower back MRI was ordered by my primary physician, Dr. Yolanda Grady. It identified a disc protrusion, a "4 mm broad-based left lateral disc protrusion in L4-L5 and also a mild disc desiccation and disc bulge in L3-L4." My pain specialist did not see this as a significant contributing factor to my back pain at that time. My current pain specialist (Curtis Joung) said he might like to have another lower back MRI done soon to compare with the 2009 MRI.
In April of 2010, several other possible diagnoses were postulated by two specialists I saw: Chronic Pain Syndrome (338.4), while once again arthritis was ruled out. Another doctor (Carlos Martinez) feels it might be Synovitus (727.0) more generally in my body or Plica Syndrome (727.83) in my knees. We need to treat the pain as best we can.
The fact that several parts of my body resist healing themselves, indeed, seem indifferent to the attacks on its own soft tissue, suggests an auto-immune disease; in my case, my tibias (shin bones for example) and knees cannot repair the pain or its cause. This auto-immune problem could explain the widespread pain in my body, although some doctors have suggested that all the pain could be originating from the back.
Regarding medicine, various doctors have put me on ibuprofen, then Voltaren, then Celebrex, then back to ibuprofen. I tried Tylenol for about five months in 2002, but it led to more pain. None of these drugs have fixed anything. Presently, the best medicines for me are Advil and Vicoprofen. Also, if I have spasms, Soma usually helps. The Soma helps more for my back and the Vicoprofen helps for everything.
I feel that the "synovitus" diagnosis for my lower legs by Dr. Carlos Martinez in 2010 is probably the most accurate at this point. However, there is no test (per se) for synovitus, but it is an "auto-immune" disorder.
Also in 2010, I exchanged emails with my cousin's husband, a Dr. John Clapper, a pediatrician in Tacoma, Washington. In my email I explained my pain the symptoms, how it doesn't heal and the spasms, etc.... He wrote to me that in his opinion I have an "auto-immune" condition. He had been a full colonel in the U.S. Army Medical Service Corps, and I very much respect his opinion in this matter. I had not suggested "auto-immune" to him; he came up with it on his own.
I was glad in May of 2011 to be referred to Dr. Curtis Joung of Azusa Pain Management. I look forward to his treatment of my back and leg pain. I received the Lumbar Facet Radio-frequency (known informally as "RF") in October of 2011 (right lower back) and December of 2011 (left lower back). These were both performed by Dr. Jerrold Bustos of Azusa Surgery Center. They say you need this about every 12 months in each spot where they do it. This has helped my back tremendously thus far.
Some Optional Background Information
My first significant problem along these lines was in 1986 at age 30. I quite suddenly one day developed what seemed to be "carpal tunnel syndrome" in my right wrist and hand, which soon also happened in the left also. I believe it was initially stress related, on account of difficult classes I was taking in the Army. Since that time, the carpal tunnel (or "writers' cramp") occasionally flares up, but if I wear some wrist braces for a few hours or days it recedes. I've come to believe (in hindsight) that this was NOT a case of carpal tunnel. It doesn't fit all the criteria, for example, I have no shooting pains down my arms.
I believe that 1986 marked the beginning of an auto-immune disorder throughout my body. I remember saying to myself back then, "What if this stiffness and pain in my hands were to go into my legs?" A peculiar thought about something that ended up actually happening ten years later.
In about 1990, I began having serious shoulder pain which I attributed to carrying my heavy golf bag. I got cortisone shots which helped at first but didn't help at all after about two years. My back was also involved in occasional pain beginning in 1992 which prohibited me from golfing sometimes. In 1992, I (finally) stopped carrying my golf bag and got a hand cart to pull my golf clubs, but perhaps the damage had already been done. By 1998, I stopped playing golf completely on account of my leg pain. The bilateral shoulder pain has never gone away. The back pain hits me two or three times a week now. When it gets so bad that I can't walk, Flexaril usually helps, though I try to avoid the Flexaril due to the grogginess. My treatment of choice is to put ice packs on my knees, shins or back.
As for the beginning of the knee pain, between March to September, 1996, I had three episodes — about 10 weeks apart — where my left knee became extremely painful while walking across a room, having just gotten up from a chair. I had to stop for a few seconds and wait, and then I was able to continue walking.
On October 1, 1996, while walking up an incline, my left knee suddenly became extremely painful such that I could no longer walk. I saw an Orthopedic specialist who sent me to Physical Therapy. I was on crutches for two weeks until the physical therapist taught me a taping method that pulls the kneecap to the inside allowing me to walk. I believe this is called "the McConnell Method." This taping helped me for several years, and I used it now and then, but essentially stopped helping by 2002. The PT itself, three weeks, did not result in any improvement in the condition, nor did the taping. I wore knee braces for several years, but these never helped anything improve. In fact, the various knee braces would create pain in an accumulating way from all the walking I was doing, until I could hardly stand it.
On November 8, 1997, had another episode of not being able to walk, left knee again. This episode occurred just after I got up from a chair to start walking. Used crutches for two days. Used ice packs at night.
In mid-1998, the left knee continued to act up but the left and then right ankles began to be greatly in pain. I could not walk several mornings due to the left ankle. Remedy was to soak it in very hot water for 20 minutes, and then I could walk again.
On November 24, 1999, the right knee went out for the first time. What I mean by "went out" is that it became like the left knee had sometimes been, too painful in weight bearing, so that I could not walk. This episode occurred about eight hours after I had been running (running as best I could, as part of my job that day), and was then sitting, and then stood up and couldn't walk. In year 2000, this right knee went out again on January 7, March 3, May 20, August 18, and September 29. A new problem occurred between January through May, 2000... both my calf muscles often had painful spasms. The pain was so severe in the calves as to render me almost unable to walk.
Whenever my knees "went out", there were no exercises that would alleviate the pain and allow me to walk. The only remedy I knew was to rest, lay on my bed, for between 20 to 30 hours and utilize ice packs.
In reference to the November 24, 1999, and January 7, 2000 episodes, I was involved in Workmen's Comp treatment, especially physical therapy (5 weeks). The therapist was excellent. Unfortunately, my legs did not cooperate with the treatment. The object was to "strengthen the muscles around my knees." But I usually developed more pain during the treatments, and several times I had to stop the sessions and go home, hoping I could make it to my car.
If you have finished reading this web site and you have some ideas that might help me, please email me. If you have found this web page helpful to yourself or you would just like to communicate with me about it, you may write. But please don't ask me to try and diagnose your condition. I am not a doctor. Thank you and God bless you.
Here I am on my scooter, the Pioneer 5 by Merits Health, overlooking the Monterey Bay in California, May of 2003 on an outing to the Monterey Aquarium. People with scooters can go lots of places and do lots of fun stuff. I'm adjusting to my new way of life. My next scooter is also by Merits Health .... you can see it by clicking here.