It has been a long while since my last post. I am finally updating my blog, because I finally have something to say, and the energy with which to “speak.”
My sister went to a doctor recently for medical stuff, and the resident that was checking her out happened to mention that “CFS and Fibro” are “in the mind” illnesses. Being someone who has suffered with CFS for what one doctor suspects is from childhood, I have issues with that, and have decided to dedicate this post to not only the Center for Disease Control diagnostic requirements for CFS, but also how CFS has an impact on someone who does not have it “all in her head.” I have heard that crock of bull-honky from so many people through the years.
There are several case definitions for CFS and all require fatigue as one of the symptoms. CDC uses the 1994 CFS case definition, which requires meeting three criteria:
- The individual has had severe chronic fatigue for 6 or more consecutive months and the fatigue is not due to ongoing exertion or other medical conditions associated with fatigue (these other conditions need to be ruled out by a doctor after diagnostic tests have been conducted)
- The fatigue significantly interferes with daily activities and work
- The individual concurrently has 4 or more of the following 8 symptoms:
- post-exertion malaise lasting more than 24 hours
- unrefreshing sleep
- significant impairment of short-term memory or concentration
- muscle pain
- pain in the joints without swelling or redness
- headaches of a new type, pattern, or severity
- tender lymph nodes in the neck or armpit
- a sore throat that is frequent or recurring
These symptoms should have persisted or recurred during 6 or more consecutive months of illness, and they cannot have first appeared before the fatigue.”
I have had every single medical test run on my body, except the tilt-table test to check my heart. My doctors have all agreed that the tilt-table test is not something that could be justified to the insurance company because of the lack of history of fainting or dizziness. All medical tests run, and blood work, have come back absolutely fine. I look perfect on paper. All my vitamin levels have been checked, to rule out Vitamin D deficiency, as well as Vitamin B-12 deficiencies. To date, there is no physiological reason for my severe chronic fatigue – and let me tell you, the fatigue is unbearable at times, and is usually muscular fatigue.
The second point is pretty self-explanatory. When we initially began the testing process, it was because Solder Boy recognized I was unable to carry a laundry basket upstairs from downstairs, without having to take a break when I got to the top to rest. At first, we figured I was out of shape, but after months of losing weight, working out, I still was unable to carry the laundry basket downstairs, do the laundry, carry it upstairs, and put it away in one day. To this day, laundry is done in stages, and usually takes me a couple days to complete.
Let me explain, to my friends, what hits me for point 3:
~ Post-exertion malaise… = this means taking a walk around the block some days is too much for me. Even in the prime of my physical conditioning, I would routinely “crash” after workouts. When I was in ROTC, I learned to schedule afternoon classes, so I could go home after PT and sleep for 3-4 hours to have the energy to get to class, and pay attention. Once you get out of shape, it sucks getting back into shape – because you have to listen to your body, and listen to your muscles, and stop yourself when you start feeling the burn. I had one awesome physical trainer, who had a degree in physical therapy, who explained to me that “most people work to the burn, and then to build muscle, work through the burn. For people with CFS, when you work to the point of burning, you need to stop – and sometimes, that is even too far.” How frustrating to someone who wants to get stronger…
~ Unrefreshing sleep = as a new mother, it is imperative one get sleep when baby sleeps. Sometimes, I get the sleep and wake up refreshed. But, those times are few and far between. For example, last night I got 5 hours straight, and woke up with my upper body feeling like noodles. Then, after feeding Man Cub, I went back to sleep for four hours. I had no upper body strength after the 4 hours’ sleep. I have slept 9 hours recently (Man Cub has done some impressive sleeping in the past couple months), and still wake up with my muscles feeling rubbery. The best I can describe it is the feeling of reaching muscle failure doing workouts.
~ …impairment of short-term memory and concentration = I spent the better part of half a mile walk recently, trying desperately to remember the name of a friend whose house I decided to stop by, just to see how she was doing. I had decided that, if I reached her house and couldn’t remember her name, I would just not pop in. I remembered it as I crossed the street to her house. This is a lady that I have known for about a year, who has spent several days with us as a family, and whom I genuinely like. Many times, during conversations, I will be unable to remember what I was saying. Furthermore, sometimes I have the ability to know what I’m trying to say, but not having it come out of my mouth. I could see it being amusing to bystanders and friends and family, but it is extremely frustrating. I get “flooded” with information when it is fired at me too quickly, which depending on the day, depends on how quickly constitutes “too quickly”.
~ Pain in the joints without swelling or redness = I have several “itis”-es. I have bursitis in both hips, which a doctor agreed is applicable to this criteria. I also have tendonitis in both shoulders, and as of 3 months ago, have a diagnosed tendonitis in a knee. Being my age, it is discouraging to know I am falling apart, and have been falling apart for over a decade (my bursitis began in high school, but was not diagnosed until college).
~ Tender lymph nodes… = this occurred up until my senior year of high school, and I have noticed that since giving birth, my lymph nodes in my neck are beginning to get tender again when I get overly tired. Up until senior year of high school, almost yearly my lymph nodes would swell to the point I couldn’t turn my neck; thankfully, it has not been that bad since high school!
~ Sore throat that is frequent or recurring = As I type this, my throat is sore. It is usually sore for a week at a time, until I get a nice, long refreshing sleep. If I catch it in time, like now, it will only last a couple days. People get sore throats all the time, for various reasons – in Hawaii, it is mostly blamed on “vog” – I can assure well-meaning friends and acquaintances that vog is not the culprit for my sore throat. If that were the case, I would reckon I would get the sore throats any time it is “voggy”, and yet, I don’t. I can count on one hand the number of sore throats I have had since pregnancy ended, and they don’t always coincide with vog, mugginess, allergy producing times.
CFS is considered an autoimmune disorder, similar to fibromyalgia and any other autoimmune disease (i.e. Lupus, Rheumatoid Arthritis, etc.). I have been tested for all. Only CFS and Fibro are ones that are considered a “rule-out” diagnosis, meaning you can’t test for them – you can only rule out other medical conditions and contributing factors. Some people are so very impaired by their CFS that they qualify for SSI Disability; thankfully, I am not one of those people.
Well-meaning friends and family in the past have offered suggestions of changing my diet, losing weight, trying supplements, trying yoga, trying meditation, etc. While I thank them for their input, it makes me feel more isolated. I have tried all the aforementioned activities, to no avail. I still have my chronic issues. I had one doctor dismiss my exhaustion as being depression. When I told him my field of study, and my knowledge of the DSM-IV TR, and how I doubted I was depressed, I was told, “well, let’s let a real professional figure it out.” That was the last time I went to see that doctor, but I have seen psychologists, and lo and behold! I do not have depression, or any other mental health issue that could contribute to my chronic fatigue (combined with chronic physical ailments).
I have been told that I just need to “think positive” – maybe it will go away, since some people have had periods of remission. I had my most recent period of remission, which looking back on, I took for granted. It lasted through my pregnancy, until about 5 months post-partum. Then, the crashes occurred with an intensity and frequency that were disconcerting to me. The CFS crashes that include the fatigue, usually last 3-5 days for me. I have learned to work through them, and push myself, which actually prolongs my ability to recover. It is common for autoimmune disorders to have their symptoms disappear during pregnancy. I can attest to that for me – pregnancy fatigue is so much different than CFS fatigue, which became evident during my pregnancy!
I didn’t write this blog for sympathy. I wrote it to explain how this chronic condition impacts my life, at a “quick” glance, and how, quite frankly, isolating it can be. Not even Soldier Boy comprehends how difficult it can be – he just sees the impact first-hand by having a wife too tired to have a conversation, or make dinner some nights, or having clothes needed to be re-washed for the 2nd or 3rd time because they keep getting forgotten in the washing machine.
I also wrote this to begin compiling a list of the personal impacts of CFS for me for medical professionals I work with in the future, because I dare a medical doctor (resident or attending) to tell me CFS is “all in my head.”
I wrote it to explain to my friends and family why I typically don’t keep in touch the way I would like. I don’t even blog routinely because on my list of priorities, blogging is at the bottom. I want my friends and families to understand that I care deeply for them, but sometimes a conversation can be so very difficult to keep straight in my head – my processing gets off track. I have difficulty remembering things that are important, like birthdays, or returning phone calls, and sometimes, yes, even names. Something so basic, that when the cognitive impairment is occurring, I typically end up frustrated beyond belief, and retreat into myself until I can come out of my “crash”.
There is no cure. There is only symptom management. I think I manage my symptoms quite well, considering my circumstances. Thankfully, my symptoms require no medication management.
Thank you for reading this painfully long blog. I hope it has been educational for you, as well as provided some insight to my chronic illness. I am hopeful my next blog (whenever I get around to it) will be a much happier topic. Man Cub has grown by leaps and bounds, and the dogs are his incentive to do everything. He is adorable, and very much taking after his daddy – his smile melts my heart! The white dog plays hard to get with Man Cub, and that has endeared her to him. The black dog is his “furry mother”, and she ensures if I have missed a spot cleaning him, she will find it and ensure he is a clean baby. I have no regrets about choosing to stay home with Man Cub – it is the best fit for me, given all I have shared tonight.
In conclusion – CFS sucks…
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