Oh, that’s a doozy. My entire esophagus is scar tissue from an injury a long time ago, and one of the lingering effects is difficulty swallowing and muscle spasms.
That can be terrifying.
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Sounds devastating! How did you deal with the psychological effects of no longer recognizing yourself?
Sorry to hear you had to go through that. Having the mirror be an enemy is familiar territory and that alone can be hard enough to bear. Adding to that the objective reality, rather than it being solely subjective, must have been an added burden. My sympathies.
I do fairly well adapting to most any situation.
Sure I was extremely disappointed. My coping method was to readjust my focus of interest. I will get into those diversions as I proceed further.
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My physical appearance has changed drastically. My rheumatologist had recommended a support group. As best I can remember the group was called “Dermatomyositis, Polymyositis, Inclusion Body Myositis Support Group.” They put out a monthly magazine, that I got a subscription.
The comments within the magazine focused on two primary areas. One was in search of the magic bullet to cure the disease. And the other was personal stories of struggles and disappointments of coping with the disease.
I was wondering if my bodybuilding had anything to do with me being overcome with this disease. Neither doctor thought it had anything to do with any drugs that I had taken. And as you would guess, a number of my acquaintances were absolutely certain that my AAS use was solely responsible. I didn’t know. I read the stories of those in the support group with these autoimmune diseases to see if any had anything in common with me.
What they all failed to have one certain thing in common with me. And that was that no one had ever lifted weights. (And just as I had been told by my rheumatologist, I found that about twice or three times as many women as men had stories.) Mostly they were stories of their difficulties, disappointment, and despair. Though it was comforting that I was not alone, their stories provided more discouragement than encouragement.
The magazine mentioned some drugs that teased hope of a cure or effective remedy. I intensely read those and grasped the hope I could discover a possible solution. I mentioned all these drugs to my doctor every visit. (I was having blood tests and visits every two weeks, trying to get my CPK below 500, still on 64mg of Medrol per day.) The most recent “holy grail” was IVIG [intravenous immune globulin]. I thought that might be the way out of this mess, and I could get back to competition.
Just remember, things can never get so bad that they can’t get worse…
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Allow me to get you up to date on how I felt physically. I was always tried and spent most all of my time sitting or lying down. I had muscle aches throughout my body, most noticeable were my quads.
About 7 or 8 weeks after starting Medrol I began to feel an ache in my right calf. It seemed to get progressively worse. It progressed to the point that I began to walk on crutches, plus the left calf began to ache. I called my doctor to see if I could get in to see him. He saw about 4:00pm that afternoon.
I crutched into his office and after a brief examination he told me to go to the hospital (I didn’t have to move my car because it was near) and get an ultrasound. He said I might have a blood clot. Sure enough, the technician doing the ultrasound, who allowed me to watch the screen, said that I was getting admitted immediately. I could clearly see blockage at the right knee. She told me that a doctor would need to review the results to verify what we could both see, but that I wasn’t going anywhere.
I was admitted and on heparin drip as soon as was wheeled into my room. I was there two nights (maybe three), and they had me off heparin and on coumadin. I suppose I dodged a significant health complication getting treated as soon as I did, though it wasn’t at all soon.
Here is the fun part. Anytime my legs were below my heart the ache was intense, much more in the right calf than the left. I had blood clots behind both knees, only the right was blocked more than the left, and thus, ached more.
I was told that I needed weekly blood tests to adjust the proper amount of coumadin was required to take. They then began the discharge procedure. They asked if I had a ride home and I said yes. If they meant did I have a car to drive home, I did. It was in the parking garage. If they meant did I have a person to drive me home, I lied.
After much effort and I lot of pain I crutched my way to my car. I was exhausted. I began to drive what was about 12 to 15 miles home. I was doing alright until I was about half way there, I began to get very dizzy. I pressed though the pain and dizziness, and clearly “under the influence” and should not have been driving on a public road, but yet, managed to arrive at home. The only drugs I was on were Medrol and Coumadin.
It took about a week for me to let my legs drop below my heart without significant pain. After about a week and a half, I was back at work. (Still not in the gym, if that isn’t obvious.)
(I should add that blood clots were not triggered by dermatomyositis according to any medical literature I could find. My rheumatologist did not believe that my autoimmune disease had anything to do with this either.)
Next: The addition of more medications and “life on coumadin”…
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Thank you for writing all of this.
Unability to move is one of the major reasons for venous thrombosis. Also, thromboembolic events may occur as a side effect of corticosteroids (not very common, but nevertheless described and most likely dose dependant).
The next trip to my rheumatologist was after my discharge from the hospital that was preceded with blood tests for CPK and PT (prothrombin time). My CPK was still too high, but coming down, though slower than he would like. He said he wanted to add an additional immune suppressant. I was all for doing everything possible to stop the attack on my muscles. We added methotrexate, though I don’t recall the dosage. I was still taking 64mg of Medrol every day.
Next the doctor began to express his desire for the diet restrictions that would allow the coumadin to work most effectively keeping my blood from clotting. He recommended limiting my intake of vitamin K food sources. I told him that sounded like he wanted me to limit my intake of all leafy green vegetables. He said yes, no more leafy green vegetables. (I had been very health conscious since my mid-30’s. This sounded like a terrible idea, especially in light of his warnings of getting cancer. My good senses said there must be a “work around.”) After that close brush with sudden death by getting blood clots, I agreed.
He adjusted my coumadin intake to correspond to the PT reading, and said get another blood test next week and call him two days later for further coumadin adjustment if necessary.
I am becoming less confident that I will ever be able to compete in bodybuilding again. I have tremendous confidence in the power of muscle memory, but my case might surpass the capability of muscle memory. I am noticing that the pectoral major muscle is wasting fairly rapidly from it origin at the lower sternum, and working its way up and out. I feel this might be a point of no return. Fat tissue is beginning to accumulate in my outer pec area near my arm pits. Both of my lower legs are swollen and red, the right more so than the left.
The wasting away of my pectoral major reminded me of a young bodybuilding contestant who was born without a pectoral major. He wasn’t exceptional anywhere, but had a nice physique otherwise. The total absence of his pec major gave him a very odd appearance.
As you might guess I am focused on my terrible fate, as if I have been dealt the worst of hands. One day I was at the mall pining my fate and then I walked past a young quadriplegic in a electric wheel chair. I felt like an ungrateful fool. I sure had it great. That young man would trade places with me at the drop of a hat.
Making some progress…
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Sometimes we have to encounter the less fortunate to realize how good we have it
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At a late December 1997 trip to my doctor he had some good news. My CPK had dropped below 500. (I had a good handle on controlling my PT numbers with Coumadin too.) The doctor wrote me a prescription for 4mg tablets of Medrol. I was to drop my Medrol dosage per day by 4mg, which made it 60mg per day. He said would try to wean me off of Medrol and see if my immune system had “reset itself.”
Every two weeks I followed the plan. Get a CPK blood test and wait for a call from the doctor. As long as my CPK was below 500, I would reduce my Medrol by 4mg. This went on for weeks until I got to 8mg of Medrol a day (about July). That time my call from the doctor was bad news. My CPK had increased over 1,000. A bit of good news was that he believed 32mg of Medrol might bring my CPK back below down below 500. And it did just that. So the plan was to stay on 32mg of Medrol a day until my CPK dropped to below 500, which it did in about 6 weeks. I then returned to trying to wean off Medrol.
Once it seemed that I was on this vicious cycle of immune suppressants for life, I thought it was time to question my doctor concerning my long term health. I made an appointment. I got into seeing him the next week.
One bit of good news, when I questioned him about my lack of intake of leafy green vegetables, he said that I could begin dropping the Coumadin, which I did over the course of about 2 weeks.
The really bad news: I had a cyclic case of dermatomyositis. That is, it responded to steroids, but as soon as insufficient steroids were present in my system my immune system went wild.
I voiced my concern. I told him that I was in a life extension diet and supplementation program when I was overcome with dermatomyositis. I wanted to get back into that life style. I was highly concerned about my immune system being totally suppressed, such that I was at greater risk of cancer. We agreed to stop the methotrexate and see if I would respond to Medrol alone. I questioned if there was another option that didn’t adversely weaken my resistance to cancer. I told him that many on the support group had high hopes for IVIG treatment. He said he would look into that.
I am still not lifting weights.
We are about to give IVIG a try…
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Your story is a good reminder for all of us not to get too complacent just because we exercise, eat a reasonable diet, and otherwise follow a healthy life style. That is a pretty effective strategy for minimizing the risk of succumbing to several of the most common chronic diseases of affluence. But the ways in which your body can malfunction and kill you are quite numerous, and these are often out of our control. While modern medicine has come up with treatments for many of these conditions, and they can keep you alive longer than would have been possible 100 years ago, the side effects of these “miracle” drugs are often significant, and not so miraculous…
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As 1998 was coming to a close my rheumatologist arranged for me to receive IVIG. He had referred me to a doctor to follow the IVIG treatments. My treatment doctor came off as a little goofy to me, but very nice and understanding.
I was just coming down in Medrol dosage to 24mg per day and was to start IVIG the first of December. My treatment schedule (if I recall correctly) was every Monday for two months. I arrange with my work to work four 10 hours days instead of my usual five 8 hour days.
I found that I was receiving IVIG treatment at a cancer treatment center. This part of my journey for a cure left a very deep impression on my soul. The treatment duration was about 5 hours. There were four areas that accommodated about 10 patients/area in very comfortable recliners, each area with its own TV. Of the 40 patients I was usually the only one there not being treated for cancer. Many patients were in a quite advanced stage of cancer, but many were generally what appeared good health. There were about 6 or 7 nurses on duty. The nurse technicians were absolutely phenomenal. I got to know a few of them very well.
The protocol was to have a saline IV started and take 2 Tylenol. They would then hang a bag of 50mg of Benadryl. This was common to most all there. After the Benadryl was emptied they started the IVIG and monitored my blood pressure every half hour. (50mg of Benadryl administered IV will knock you out.) It then seemed about 2 1/2 hours to complete the IVIG. I would arrive near 8:00am and be discharged around 2:30pm, or so, sometimes sooner, sometimes later.
There was a surprising aspect of the patients there in their TV show choices. Most there wanted to watch Jerry Springer, and other similar shows.
As I progress through the many times that I was treated there, I will discuss a segment that touched my heart. There was a room filled with wigs. Volunteers worked there and talked with all 40, or so patients hooked up to IV’s. They offered wigs for those who might want one. I never knew if they charged for the wigs, or not. But I figured that they might be free for those in need. The volunteers also talked briefly with all of us, encouraging all whom they could connect. It was one of the many touching moments of the days I was treated.
The sad part, was that I felt I was there with the hopes of getting better, while the rest of the patients were there fighting for their lives. I always felt a little guilty taking up a chair.
At the end of my 8 treatments over 8 weeks, my CPK was still below 500, and my Medrol dosage had just started to take 8mg/day.
In less than a month my CPK rose above 1,000, again…
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I apologise for my ignorance but it seems as if the severity of what you were going through certainly warranted being in that chair. What would have happened without treatment?
Sure my autoimmune disease was severe. And the treatment (steroids and immune suppressants) increased my chances of getting cancer. Fighting this disease is definitely life altering and potentially deadly, but those other patients were actually fighting cancer that was trying to kill the them as soon as it could. It was obvious that many there were losing the battle. That hurt my heart watching their weekly decline.
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I don’t think you should feel guilty. I don’t think there is a shortage of spots for chemo therapy. Meaning, that maybe you got the last chair there, but somewhere else probably close by was an empty chair.
I left out an aspect of my dermatomyositis journey.
Having had the blood clots behind my knee I was aware of the soreness of my calves that were indicative of a vein blockage behind my knee. A couple months before my IVIG treatment, I noticed my calves were beginning get progressively sorer. I called my rheumatologist and he sent in a prescription of Lovenox for me. If memory serves me right I took the injections about 2 weeks. And all was back to normal. The doctor said that I need to move more, but no weight lifting. I took my orders and upped my walking, and never sat with my knees bent for very long before standing and walking around the office and down the hall. I moved my feet while sitting… anything to stimulate lower leg blood flow. I wasn’t actually doing cardio, just moving blood.
I’ll still continue today with what followed a half year after the IVIG…
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At an doctor’s appointment in early summer, my rheumatologist suggested that I should get a bone density test, because I had been on high doses of Medrol for over 18 months. By then my CPK had been up and down and up again above 1,000. I said sure thing.
My diet was good. He had worried that my blood sugar might get out of control taking so much Medrol, I told him that I had a good handle on insulin management, thus shouldn’t be a problem. As it turned out my blood sugar never presented itself as a problem. But as to Medrol side effects, I should have mentioned that about 4 weeks into 64mg per day, I mentioned that my mind was racing when I tried to sleep. He said the Medrol caused it. I asked if he could prescribe sleeping pills. He said no. They were habit forming. I asked if there was another medication that might help. He gave me Flexeril (cyclobenzaprine). That worked, especially the first night. I couldn’t get out of the bed until 3:00pm. But my body quickly adjusted, yet still helped sleep.
I went to a medical imagery facility to get my bone density tested. That was painless and fairly quick. A week and a half later I went to my rheumatologist for a follow-up on the test results. The doctor said that I had regressed into osteopenia, and, if things continued, that I would have osteoporosis fairly soon. I then asked, “Doc, are you trying to cure me to death?” He smiled. He then said that he had arranged for another shot at IVIG, the next month. I said good.
On the way home, I decided, “What do I have to lose?” To hell with dermatomyositis treatment protocol, it was time to at least slow the road to osteoporosis. I am going back to the weight room. Also, my body was spilling creatine (CPK), so I would add some back. I started taking creatine monohydrate again.
I am back my my familiar surroundings: The gym…
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Infusion centers leave an indelible mark on those who spend time in them. (Just walking through one once will make an impression.)
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I had a relatively minor surgery at Walter Reed and was on the Iraq floor with heroes, and their families, that had suffered severe brain damage, burns, and lost multiple limbs. I absolutely understand your feeling of invading their space without the same right.
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