In order to combat my Lyme disease, I am taking two hefty doses of an antibiotic that must be taken with food. If you don't have a good amount of food in your stomach it is highly likely that you will vomit. In addition, I have a powerful NSAID that I should take several times a day that has the same warnings. That one I have actually experienced twice. The first time because I assumed that the warning was on the same level as taking Ibuprofen, which I can gobble up on an empty stomach most of the time without any ill effects. The resulting nausea and vomiting from my mistake taught be a lesson about heading warnings on prescription pharmaceuticals. The second time it happened it wasn't because I had taken the pill on an empty stomach. I learned that "with food" meant a SIGNIFICANT amount of food.
Part of the disease symptoms that I have to deal with is my constant sleepiness, regardless of how much sleep I get. I went through a sleep study in July that showed that there is nothing abnormal, or 'non restful', with my sleep patterns. I was labeled with Idiopathic Hypersomnolence (meaning: no known cause sleepiness). To fight the sleepiness I started taking Adderall. It's an amphetamine. Amphetamines sap your appetite. Part of me was looking forward to taking this in hopes that it would help me shed some pounds. Unfortunately, I'm taking several drugs that are at cross purposes.
The Adderall diminishes my appetite. I can easily skip breakfast when I'm taking it. On the other hand, I need to eat a reasonably solid breakfast and then dinner to take two of my other drugs. I have cut down on my snacking quite a bit since starting the Adderall, so I have dropped a couple of pounds. However, it does kind of stink that I can't take full advantage of one of it's side effects to REALLY drop some weight.
By the way, when I get ready for bed, one of the drugs I take is a muscle relaxant to minimize the stiffness and potential for muscle spasms that can happen when I sleep. I have actually injured myself, causing inflammation that takes days to weeks to recover from (see yesterday's post about injury recovery). Usually the Adderall is out of my system by bed time, but the muscle relaxant is at cross purposes to it as well.
"Better living through chemistry" right?
Showing posts with label fibromyalgia. Show all posts
Showing posts with label fibromyalgia. Show all posts
Wednesday, September 26, 2012
Tuesday, September 25, 2012
What is your pain level right now?
As a chronic pain sufferer, I am used to answering the following question from medical providers on a regular basis:
Nineteen months ago I slipped on a patch of ice in front of my house and severely damaged the soft tissue in my left shoulder. Scans showed that there were no tears to any ligaments, tendons, or other mappable structures. After six months of physical therapy we decided that it was as 'back' as it was going to get. Unfortunately, this did not leave me with a healthy shoulder.
Part of my chronic health issue over the last seven years has been chronic inflammation. If I sustain any sort of injury, it seems that I will be plagued by that injury on some level until my dying day. The left shoulder is a prime example of this scenario. Every day it at least aches to a certain degree. Some days it straight out hurts. Even so, in comparison to other pains that I have struggled with, the chronic shoulder pain rarely merits more than a 7. However, the shoulder situation is about more than just "pain".
Usually there is more of a sense of discomfort. The joint feels swollen in some way. It can feel better to hold my arm straight up, especially if I bend at the elbow and rest the weight of the arm on my head (nice image, right? I've gotten some seriously odd stares at the office over this.) There must be some swelling involved since, at its worse, my left hand feels a bit 'off' and my bicep may feel achy as well. However, it's not all inflammation since my prescription NSAID only dampens the discomfort a little. And, it's not strictly pain either, since taking the max dose of my non-opiate prescription pain relievers barely warrants a footnote when the shoulder is really acting up. Usually both drugs together can tune the discomfort down a notch or two so that I can get through the day.
USUALLY. Today is not one of those days.
If I were to step back and analyze "the pain" in my shoulder right now, it probably would warrant a six. Right there, in the front of the shoulder. SIX. Six isn't that bad, right?
Except it's not just that spot where it definitely "hurts". It's about all the discomfort in the surrounding tissue, into my bicep, and down to my hand. THEN, there's the fact that my pelvic girdle is a bit achy today, as is my low back. On top of that I know that when I get up from this chair, both thighs are going demand my attention with their multiple maddening small to midsized complaints.
It's all additive. I logically know that all of it together is not as distracting and intolerable as the worse pain that I've ever experienced (tie between gallbladder attack and labor). Still, when the dozens of bits conspire together you want to be able to quantify the sense that you can barely catch your breath from moment to moment for want of screaming. Mostly, it's just below that or I wouldn't have been able to write all of this. Though I did have to stop and refocus myself too many times to count. Each time I take several deep breaths and try to dispel the cacophony of all those co-conspirators bouncing around in my head.
This is just one example of what it's like to live with chronic pain. I am so glad that every day is not quite this bad. Today is one of those days where I contemplate taking up prayer to a deity that I cannot believe in. Oh, how I wish I could. If I could pray, I would pray that the Lyme diagnosis and treatment will at least keep the discomfort from reaching this volume ever again. I would like to believe that I could make all (or at least most) of the pain go away. But my skeptical wiring won't even let me hope for something that seems too much like a fairytale.
If you see me and I seem in good spirits, do not assume that it means that I am not in pain. Also, if I am not showing it, do not ask me about my pain. When I look fine, I'm doing my best not to think about it. So please, please, don't remind me. If I look miserable or distracted, feel free to ask me how I am doing. Or if I need to talk about it and I trust you enough, I will bring it up.
The last thing I want is to have my pain define my relationship with others. Days like today it is hard for even me to remember this, but I am more than this pain that I live with. Every day. Every hour. And sometimes, every minute ... to minute ... to minute.
On a scale of 1 to 10, what is your pain level right now?Days like today present a quandary. It depends on the absolute definition of the word "pain". (No, no, not "is" or "sex" or "It!")
Nineteen months ago I slipped on a patch of ice in front of my house and severely damaged the soft tissue in my left shoulder. Scans showed that there were no tears to any ligaments, tendons, or other mappable structures. After six months of physical therapy we decided that it was as 'back' as it was going to get. Unfortunately, this did not leave me with a healthy shoulder.
Part of my chronic health issue over the last seven years has been chronic inflammation. If I sustain any sort of injury, it seems that I will be plagued by that injury on some level until my dying day. The left shoulder is a prime example of this scenario. Every day it at least aches to a certain degree. Some days it straight out hurts. Even so, in comparison to other pains that I have struggled with, the chronic shoulder pain rarely merits more than a 7. However, the shoulder situation is about more than just "pain".
Usually there is more of a sense of discomfort. The joint feels swollen in some way. It can feel better to hold my arm straight up, especially if I bend at the elbow and rest the weight of the arm on my head (nice image, right? I've gotten some seriously odd stares at the office over this.) There must be some swelling involved since, at its worse, my left hand feels a bit 'off' and my bicep may feel achy as well. However, it's not all inflammation since my prescription NSAID only dampens the discomfort a little. And, it's not strictly pain either, since taking the max dose of my non-opiate prescription pain relievers barely warrants a footnote when the shoulder is really acting up. Usually both drugs together can tune the discomfort down a notch or two so that I can get through the day.
USUALLY. Today is not one of those days.
If I were to step back and analyze "the pain" in my shoulder right now, it probably would warrant a six. Right there, in the front of the shoulder. SIX. Six isn't that bad, right?
Except it's not just that spot where it definitely "hurts". It's about all the discomfort in the surrounding tissue, into my bicep, and down to my hand. THEN, there's the fact that my pelvic girdle is a bit achy today, as is my low back. On top of that I know that when I get up from this chair, both thighs are going demand my attention with their multiple maddening small to midsized complaints.
It's all additive. I logically know that all of it together is not as distracting and intolerable as the worse pain that I've ever experienced (tie between gallbladder attack and labor). Still, when the dozens of bits conspire together you want to be able to quantify the sense that you can barely catch your breath from moment to moment for want of screaming. Mostly, it's just below that or I wouldn't have been able to write all of this. Though I did have to stop and refocus myself too many times to count. Each time I take several deep breaths and try to dispel the cacophony of all those co-conspirators bouncing around in my head.
This is just one example of what it's like to live with chronic pain. I am so glad that every day is not quite this bad. Today is one of those days where I contemplate taking up prayer to a deity that I cannot believe in. Oh, how I wish I could. If I could pray, I would pray that the Lyme diagnosis and treatment will at least keep the discomfort from reaching this volume ever again. I would like to believe that I could make all (or at least most) of the pain go away. But my skeptical wiring won't even let me hope for something that seems too much like a fairytale.
If you see me and I seem in good spirits, do not assume that it means that I am not in pain. Also, if I am not showing it, do not ask me about my pain. When I look fine, I'm doing my best not to think about it. So please, please, don't remind me. If I look miserable or distracted, feel free to ask me how I am doing. Or if I need to talk about it and I trust you enough, I will bring it up.
The last thing I want is to have my pain define my relationship with others. Days like today it is hard for even me to remember this, but I am more than this pain that I live with. Every day. Every hour. And sometimes, every minute ... to minute ... to minute.
Saturday, September 22, 2012
In which we try to attack the Lyme, that we don't "medically" have
As many of you know, I have been suffering from ever-worsening chronic pain and fatigue for a number of years. Doctors have sent me to physical therapy, have put me through numerous tests, and finally have prescribed me symptom-managing drugs. I suspected that I might have Fibromyalgia. This past Spring, one of my physicians official diagnosed me with the Syndrome. As a result of the diagnosis, and her experience with my leg/hip/back pain frequently making it difficult for me to walk long distances, she even signed a request for me to get temporary disability tags for my car.
When discussing the diagnosis and related health issues with some friends on Star Island this Summer, several of them vehemently stated that I have Lyme disease. They asked if I had been tested. There are two insurance-accepted tests for Lyme disease, ELISA and Western Blot. I tested negative on both in the last year. These tests look for a specific number of serum markers. There are more comprehensive tests that my friends encouraged me to look into.
When I returned from vacation, I had a sleep study scheduled. I have been getting more sleepy during the day over the past year. No amount of sleep seems like enough. It took several weeks to get the study results back to the provider who ordered it. She told me that there is nothing going when I sleep that shows anything abnormal (very little snoring, no apnea, normal REM cycle patterns). However, during the day study I showed an extreme ease in falling asleep. Sleep affinity is measured on a scale of 1 to 20. 1 being virtually asleep all the time, and 20 being too awake to fall asleep. My score was a 6. To manage my wakefulness, we ended up going with Aderall. So basically, I'm on amphetamines now, on top of pain meds, muscle relaxers, NSAIDs, and anti-seizure drugs to get rid of shooting pains and tingling.
During one of my check-in visits, I mentioned to my sleep doctor that I was thinking of getting a comprehensive Lyme test since all of my symptoms, including the "idopathic hypersomnolence" that she diagnosed, fell in line with Lyme. Turned out that she had some of the test kits from NeuroScience, Inc. So we drew the blood samples and sent them off to their lab.
My doctor called me on a Saturday morning to tell me that she got my results back. She knew how important this was to me. If I have an infection that is treatable, that is so much easier to accept than having a Syndrome that I'll have for the rest of my life. She told me that her interpretation of the results was that I definitely have a long standing case of Lyme. We agreed to meet later in the week with someone from the lab on the phone to confirm our understanding of the results.
That evening I watched "Under Our Skins" a documentary about Lyme disease and some of the controversies around its diagnosis. There appear to be two vehement camps in this discussion. The Establishment camp consists of the CDC, insurance companies, and most infection disease doctors, who state that Lyme disease is easily detectable with the two tests they recognize and that all the other diagnostic tools out there, or different interpretations of the two recognized tests, are flawed. That patients who do not show as 'positive' on their tests do not have Lyme, but are suffering from something else and should not be treated like they have Lyme.
The other camp of doctors and patients claim that there are multiple strains of Lyme that will not test positive with the narrow definition proclaimed by The Establishment. These doctors, many of whom become members of the International Lyme and Associated Disease Society (ILADS), stand by more comprehensive testing and a less rigid interpretation of Western Blot and ELISA test results. Most of the people who end up as their patients have been bounced around from doctor to doctor, diagnosed with all sorts of chronic syndromes and diseases that have to be suffered through but that cannot be cured. Once these patients end up with an ILADS provider, they are examined for THEIR SYMPTOMS first and are given the standard AND more comprehensive tests to CONFIRM a diagnosis of Lyme or related infection. If this (non-Establishment-based) diagnosis holds up, these patients are treated intensively for an infection that they probably have lived with for years and years. Many to most of these patients GET BETTER with this treatment. Very few suffer lasting side effects from the treatment they are given.
I am not one of those patients, being treated by an ILADS provider using strong doses of antibiotics and supporting supplements to attempt to drive an infection from my body. I received fair warning that there may be uncomfortable side effects during treatment. The antibiotics may make me nauseous, headachey, or give me diarrhea for one. Once the antibiotics start working, the die off of the organisms will release their toxins into my system en masse. So, it is likely that I will feel worse before I see any benefit to the treatment. As rotten as I've been feeling, it is worth the downside to me. Primarily, I want to stop the progression of what has been happening to my body. The last year in particular has been extremely tough. I have even toyed with the idea of going on full disability, which I really can't afford to do.
I took my first dose of mega antibiotics last night with dinner. I haven't been hungry enough today to eat enough food to take my next dose. Hopefully, I can do that soon. Also, I hope to check in hear at least weekly to document the progress of the treatment. If anyone is still checking in here, wish me luck.
When discussing the diagnosis and related health issues with some friends on Star Island this Summer, several of them vehemently stated that I have Lyme disease. They asked if I had been tested. There are two insurance-accepted tests for Lyme disease, ELISA and Western Blot. I tested negative on both in the last year. These tests look for a specific number of serum markers. There are more comprehensive tests that my friends encouraged me to look into.
When I returned from vacation, I had a sleep study scheduled. I have been getting more sleepy during the day over the past year. No amount of sleep seems like enough. It took several weeks to get the study results back to the provider who ordered it. She told me that there is nothing going when I sleep that shows anything abnormal (very little snoring, no apnea, normal REM cycle patterns). However, during the day study I showed an extreme ease in falling asleep. Sleep affinity is measured on a scale of 1 to 20. 1 being virtually asleep all the time, and 20 being too awake to fall asleep. My score was a 6. To manage my wakefulness, we ended up going with Aderall. So basically, I'm on amphetamines now, on top of pain meds, muscle relaxers, NSAIDs, and anti-seizure drugs to get rid of shooting pains and tingling.
During one of my check-in visits, I mentioned to my sleep doctor that I was thinking of getting a comprehensive Lyme test since all of my symptoms, including the "idopathic hypersomnolence" that she diagnosed, fell in line with Lyme. Turned out that she had some of the test kits from NeuroScience, Inc. So we drew the blood samples and sent them off to their lab.
My doctor called me on a Saturday morning to tell me that she got my results back. She knew how important this was to me. If I have an infection that is treatable, that is so much easier to accept than having a Syndrome that I'll have for the rest of my life. She told me that her interpretation of the results was that I definitely have a long standing case of Lyme. We agreed to meet later in the week with someone from the lab on the phone to confirm our understanding of the results.
That evening I watched "Under Our Skins" a documentary about Lyme disease and some of the controversies around its diagnosis. There appear to be two vehement camps in this discussion. The Establishment camp consists of the CDC, insurance companies, and most infection disease doctors, who state that Lyme disease is easily detectable with the two tests they recognize and that all the other diagnostic tools out there, or different interpretations of the two recognized tests, are flawed. That patients who do not show as 'positive' on their tests do not have Lyme, but are suffering from something else and should not be treated like they have Lyme.
The other camp of doctors and patients claim that there are multiple strains of Lyme that will not test positive with the narrow definition proclaimed by The Establishment. These doctors, many of whom become members of the International Lyme and Associated Disease Society (ILADS), stand by more comprehensive testing and a less rigid interpretation of Western Blot and ELISA test results. Most of the people who end up as their patients have been bounced around from doctor to doctor, diagnosed with all sorts of chronic syndromes and diseases that have to be suffered through but that cannot be cured. Once these patients end up with an ILADS provider, they are examined for THEIR SYMPTOMS first and are given the standard AND more comprehensive tests to CONFIRM a diagnosis of Lyme or related infection. If this (non-Establishment-based) diagnosis holds up, these patients are treated intensively for an infection that they probably have lived with for years and years. Many to most of these patients GET BETTER with this treatment. Very few suffer lasting side effects from the treatment they are given.
I am not one of those patients, being treated by an ILADS provider using strong doses of antibiotics and supporting supplements to attempt to drive an infection from my body. I received fair warning that there may be uncomfortable side effects during treatment. The antibiotics may make me nauseous, headachey, or give me diarrhea for one. Once the antibiotics start working, the die off of the organisms will release their toxins into my system en masse. So, it is likely that I will feel worse before I see any benefit to the treatment. As rotten as I've been feeling, it is worth the downside to me. Primarily, I want to stop the progression of what has been happening to my body. The last year in particular has been extremely tough. I have even toyed with the idea of going on full disability, which I really can't afford to do.
I took my first dose of mega antibiotics last night with dinner. I haven't been hungry enough today to eat enough food to take my next dose. Hopefully, I can do that soon. Also, I hope to check in hear at least weekly to document the progress of the treatment. If anyone is still checking in here, wish me luck.
Monday, May 26, 2008
Mother's Little Helper - time for a reassessment
For chronic pain sufferers, medical 'science' is an utter crap shoot. The efficacy of many treatments are short lived, if effective at all.
Over the years, I have built up quite the tolerance to most muscle relaxants and OTC pain medications. My internist specializes in chronic pain. However, he is not big into pharmaceuticals (to most, this may seem like an oxymoron, of sorts). When I first started seeing him, he gave me mail-refillable (3 months at a time) prescriptions on most of my drugs, but month-by-month on one of them (Soma). Over the last six months, he has changed over all my prescriptions to month-by-month. Last week, his office called and told me that they had filled my request for Soma, but that the doctor would like me to come in for an office visit.
If I were purely drug-seeking, this turn of events would bother me. However, I have known for quite some time that the drugs really aren't helping me that much. For the most part, they take the edge off an intolerable situation, but are nearly ineffectual in relieving my pain. I really would LOVE a new answer. Perhaps some treatment has evolved over the last two years that we haven't tried yet?
I really want the doctor to give me a new treatment. If he tells me to go to physical therapy again, I'm going to introduce him to some of my ruder vocabulary. I have done P.T., off and on, for the last five years. I exercise to some degree nearly every day. I doubt that surgery is really the answer for me, at this point. I do not have a disc problem, and my spinal stenosis is minor in comparison to most people who end up under the knife. I do have some stability issues, but surgery probably would not address the bulk of my issues. Also, NSAIDs really do not provide much relief for me at this point (and bring their own complications that my lower digestive system does not deal well with ... there just isn't enough fiber in the universe to compensate.)
Do I do things that I shouldn't do? YES! (Example: Over the last year and a half, I have resorted to drinking alcohol to get to sleep six nights out of seven.... which has put about twenty pounds back on my ever-widening butt. Plus, I KNOW that it's not good for my overall health.)
This weekend has been particularly painful because my left knee has decided to flare up in a big way. I have sciatica down my right leg right now. My left knee is so painful that I am walking with a slow painful limp. My lower back is inflamed nearly to its full-on peak. My upper right shoulder blade is starting to spasm. My hips (the frontal protrusions of my pelvic bones) are a bit tender as well. So, basically, if it can go wrong ... it's going wrong.
I've looked into a number of diagnoses myself. Chronic Fatigue Syndrome. Fibromyalgia. Rheumatoid Arthritis. Lyme disease. Nothing is spot on. Besides, my chronic back problems are directly traceable to an injury sustained just over fifteen years ago. Most of these diseases have no injury-based relationship.
So, I'm guessing that my wide-spread system chronic pain is psychosomatic. Right? [ Though part of me sees a strong potential with Fibromyalgia since I have IBS and insomnia, big time, in addition to having over half the tender points that usually categorize the disease. Sadly, the medical profession says you need to have eleven tender points to be diagnosed, and I miss that by one. OTOH, being diagnoses with Fibromyalgia doesn't REALLY get one anywhere since there is no cure and the treatments are usually marignally effective for most sufferers.]
I have an appointment with my M.D. on Thursday afternoon. I fully expect to walk out of the appointment with either fewer prescriptions or new, useless, prescriptions. (Or, in handcuffs after punching the man out for suggesting some of the same pointless crap that I have been through already.)
Sorry gang, I truly hate to bitch and moan. I'll share with you the lyrics to my current favorite retro tune by the Rolling Stones
Over the years, I have built up quite the tolerance to most muscle relaxants and OTC pain medications. My internist specializes in chronic pain. However, he is not big into pharmaceuticals (to most, this may seem like an oxymoron, of sorts). When I first started seeing him, he gave me mail-refillable (3 months at a time) prescriptions on most of my drugs, but month-by-month on one of them (Soma). Over the last six months, he has changed over all my prescriptions to month-by-month. Last week, his office called and told me that they had filled my request for Soma, but that the doctor would like me to come in for an office visit.
If I were purely drug-seeking, this turn of events would bother me. However, I have known for quite some time that the drugs really aren't helping me that much. For the most part, they take the edge off an intolerable situation, but are nearly ineffectual in relieving my pain. I really would LOVE a new answer. Perhaps some treatment has evolved over the last two years that we haven't tried yet?
I really want the doctor to give me a new treatment. If he tells me to go to physical therapy again, I'm going to introduce him to some of my ruder vocabulary. I have done P.T., off and on, for the last five years. I exercise to some degree nearly every day. I doubt that surgery is really the answer for me, at this point. I do not have a disc problem, and my spinal stenosis is minor in comparison to most people who end up under the knife. I do have some stability issues, but surgery probably would not address the bulk of my issues. Also, NSAIDs really do not provide much relief for me at this point (and bring their own complications that my lower digestive system does not deal well with ... there just isn't enough fiber in the universe to compensate.)
Do I do things that I shouldn't do? YES! (Example: Over the last year and a half, I have resorted to drinking alcohol to get to sleep six nights out of seven.... which has put about twenty pounds back on my ever-widening butt. Plus, I KNOW that it's not good for my overall health.)
This weekend has been particularly painful because my left knee has decided to flare up in a big way. I have sciatica down my right leg right now. My left knee is so painful that I am walking with a slow painful limp. My lower back is inflamed nearly to its full-on peak. My upper right shoulder blade is starting to spasm. My hips (the frontal protrusions of my pelvic bones) are a bit tender as well. So, basically, if it can go wrong ... it's going wrong.
I've looked into a number of diagnoses myself. Chronic Fatigue Syndrome. Fibromyalgia. Rheumatoid Arthritis. Lyme disease. Nothing is spot on. Besides, my chronic back problems are directly traceable to an injury sustained just over fifteen years ago. Most of these diseases have no injury-based relationship.
So, I'm guessing that my wide-spread system chronic pain is psychosomatic. Right? [ Though part of me sees a strong potential with Fibromyalgia since I have IBS and insomnia, big time, in addition to having over half the tender points that usually categorize the disease. Sadly, the medical profession says you need to have eleven tender points to be diagnosed, and I miss that by one. OTOH, being diagnoses with Fibromyalgia doesn't REALLY get one anywhere since there is no cure and the treatments are usually marignally effective for most sufferers.]
I have an appointment with my M.D. on Thursday afternoon. I fully expect to walk out of the appointment with either fewer prescriptions or new, useless, prescriptions. (Or, in handcuffs after punching the man out for suggesting some of the same pointless crap that I have been through already.)
Sorry gang, I truly hate to bitch and moan. I'll share with you the lyrics to my current favorite retro tune by the Rolling Stones
"Lifes just much too hard today,
I hear evry mother say
The pusuit of happiness just seems a bore
And if you take more of those, you will get an overdose
No more running for the shelter of a mothers little helper
They just helped you on your way, through your busy dying day
Doctor please, some more of these
Outside the door, she took four more
What a drag it is getting old"
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