Tag Archives: Fatigue

Medical #WotW

It’s been a tough week, so I haven’t written much. I’ve had countless plans and ideas in my mind, among which restarting my Dutch blog (yes, again!), but my brain and body won’t fully cooperate. I did restart the Dutch blog, but I only republished an old post. Because I can’t really get my mind to work towards creating an original blog post, I’m just going with #WotW and share my word for the week. I’m a bit late, but I checked and the linky is still open.

My word of the week, not quite surprisingly, is: medical. I’ve had quite the week with medical visits, after all. On Monday, I had to be screened by an endoscopy nurse in preparation for the upper GI endoscopy, which was Friday. The screening was relatively easy-going. The only hurdle was that the nurse hadn’t gotten a referral letter, so he had no idea why I was supposed to get an endoscopy. I explained that i had heartburn and pain up my esophagus. “Ah, you have reflux.” I happen to know the term in English but had hardly heard of it in Dutch and thought it’s the same as heartburn. I got the idea that the nurse felt the endoscopy wasn’t necessary, but he didn’t say so. Not that it’s his job to decide on such matters anyway. The nurse did say that my being short of breath while lying down but not (too badly) during slight exertion could be due to the reflux.

On Friday I got the actual procedure. It was a breeze too. A nurse from the institution came with me since my husband was at work. She wasn’t allowed in the room when I got the endoscopy but that wasn’t a big problem. I was sedated under twilight anesthesia, where you’re conscious but not quite aware of what happens. I can’t remember a thing about the procedure itself, though I do remember being brought to recovery. In the bed next to me was a man who got the news that he might have cancer. That gave me a bit of anxiety, because I still wasn’t so sure nothing would be found on my endoscopy. As it turned out, the doctor was finished telling me the results within less than half a minute. Nothing was found and he’d send a letter to my GP. I’m glad that nothing was found, although it would’ve been better if something with an easy, targeted treatment had been found.

On Tuesday, I went to my GP again because I’ve been having terrible fatigue and what I have gotten to believe is some sort of brain fog. I didn’t mention the term brain fog but did describe what it’s like. The doctor sent me for bloodwork and is going to give me a physical examination next week. Even though I’ve been a little less exhausted over the past few days, I do hope something easily treatable will be found. As the doctor explained, fatigue usually has more than one cause. It could be I’m having some case of the winter blues, because I’ve been feeling more depressed lately too. Fatigue for me gets better and then worse but it’s never fully gone though. I have had vitamin and iron deficiencies in the past, so we’lll see whether these are acting up again.

The Reading Residence

My #InvisibleFight: Fighting for Recognition of Chronic Illness

This year, Invisible Illness Awareness Week, which takes place from September 28 to October 4, has as its theme “My invisible fght”. I wrote for INvisible Illness Awarness Week in 2013, but skipped it in 2014, believing I didn’t qualify as someone with an invisible illness. Of course, I have a mental illness, but in my twisted mind I thought that didn’t count.

Over the years, I have been fighting to get a proper diagnosis and treatment for my chronic fatigue, irritable bowel symptoms and other random fun. Until early 2015, my syptoms were dismissed as being behavioral. What I mean by this is what I wrote yesterday: I was doing too little so I was fatigued. Never mind the other symptoms.

In February of this year, I was diagnosed with vitamin D, B12 and iron deficiencies. All were treated for some time, but eventually I was taken off all but vitamin D. This is a bit ironic, since vitamin D is the most potentially harmful of these three supplements and I have not had my vitamin D levels tested since April.

My doctor also didn’t follow the protocl for treating vitamin B12 deficiency. I had to insist on getting subcutaneous shots insead of tablets. The B12 research group in the Netherlands recommends shots, reasoning that, unless you’re strictly vegan,, you probably have a problem with absorption of vitamin B12 or you wouldn’t be deficient in it. The research group recommends starting with twice-weekly injections for five weeks followed by tapering based on symptoms, not serum B12 levels. I got the recommended five weeks of injections but they were discontinued after that.

I happen to be the odd one out where it comes to B12 deficiency, not having had a return in symptoms for about a month after the injections were stopped and having normal serum B12 levels even four months after my last shot. Though my symptoms returned, my B12 levels were normal about a month ago and the research group does not support supplementing without testing low in B12. Apparently, or so I assume, B12 deficiency wasn’t the root of my symptoms.

Does it matter what the root is? If there’s a targeted treatment, of course it does. If a simple pill or shot could help me live a normal life again, thee’s no reason not to fight for that. But I’ve now had these symptoms for so long. I’ve been on iron and B12 and now vitamin D for so long on and off with little long-term improvement. I’ve had so many blood tests and other tests that came back normal. And yet I’m still sick.

What am I fighting for, I wonder. If no treatment can cure my symptoms, isn’t it just the diagnosis, the recognition that something is wrong, that I fight for? In all honesty, I have to answer this question affirmatively. It’s not that I don’t also want treatment, but I also want to be validated. Is this normal?

in a way, it is. Most people with chronic physical health symptoms fight to be recognized as physically ill. They obviously also fight for treatment, but they also fight the stigma that is associated with the notion that they are psychologically ill. The problem is that, by wanting to be recognized as physically ill even if there is no known cause or treatment for our illness, we add to the stigma of mental illness.

Don’t get me wrong: physical symptoms need to be treated as they are, physical. Every possibility needs to be exhausted to find a cause and treatment for the symptoms. If there is none, that also doesn’t mean the cause is psychological or that psychological intervention will help. But it just might. Let’s fight for proper treatment of chronic illnesses and health problems, no matter their (presumed) roots.

Everyday Gyaan

Also linking up with #InvisibleFight at Invisible Illness Awareness Week. I will probably be writing another post on September 28 to honor the start of Invisible illness Week 2015.

(Not So) Busy: Looking at the Roots of My Fatigue

This week at the spin cycle, the writing prompt is “busy”. I am not technically very busy. I do not work, after all, and am not in full-time school. I still have enough time to sleep, although I sleep often at the wrong moments. During the day, that is.

That being said, you might believe it would be easy to incorporate new requirements into my schedule. Exercise three times a week. Go to the educational department at my institution to study for 90 minutes twice a week and study for an extra hour on Sundays. Write a blog post everyday Monday through Friday. Yet why don’t I accomplish this?

It’s probably that I feel too overwhelmed. It’s not necessarily that there’s not enough hours in the day, but that there are too many requirements on my mind at the same time.

I also, of course, do have limited energy. I don’t know why, but it’s probably one of those symptoms of the aches and pains of daily living. What I mean is, I don’t have a physiological explanation for it, but it’s there nonetheless.

I am not busy as a bee most of the time. Sometimes, I have more energy and tend to put my day full of activities. It seems I’m almost normal then. Right now, I feel far from normal. I feel exhausted while I’ve hardly even done much of anything.

When I once read part of a book about medically unexplained chronic health symptoms, the author presumed there were two causes of these types of symptoms (other than of course an unknown physiological ailment). Some people tended to push through and do too much, while others tended to give up and do too little. On the surface, I appear to be fiercely in the second category. After all, even on days when I feel as though I push through, I don’t do nearly as much as a healthy person my age. I still don’t work or go to school full-time and I don’t care for a family.

However, it seems to me like I do have issues with dividing my limited energy correctly, pushing through on days when I feel lots of energy and giving up on days when I feel little. Psychological treatments of mental illnesses like bipolar disorder, which include fluctuations in energy levels, teach the exact opposite. Dialectical behavior therapy for borderline personality disorder also teaches acting opposite to one’s state of mind. Could it be that I, too, need to rest when I feel energetic and push through when I feel fatigued?

I know that conventional treatment of chronic fatigue syndrome follows this line of thought. Now I don’t claim to have CFS, and I don’t mean to say that this line of treatment is correct for those who do have CFS. What I mean is that it could be helpful for me.

Everyday Gyaan

Rest #WotW

Last week, I was going to choose “sick” or “flu” as my word of the week. I was, after all, sick with the flu. To be honest, I’ve never been this ill as far as I remember. It doesn’t say much, as I hardly ever get ill, but really, this was bad. I “only” ran a fever for four days, but the shortness of breath and exhaustion were a lot worse than the fever. Actually, when I ran a low-grade fever, I felt worse than when I ran a higher fever.

The fever went away last week Friday, but it took me the whole week-end plus Monday and Tuesday before I had enough energy to spend considerable time on the computer. I wrote a few short blog posts for my Dutch blog, but didn’t have much energy for a real post.

This week, my word for the week is “rest”, because that is what I’ve been doing most of the week. I did try to keep some sembleance of a circadian rythm, though today I slept in till 11:30 AM.

I am still a little hoarse and coughy, but the exhaustion seems to have gone back to pre-flu levels. That means it’s still there to an extent.

I found out last week that I had deficiencies in iron, vitamin B12 and vitamin D. I’m now taking iron tablets, getting vitamin D drops once a week and a shot of vitamin B12 twice a week. I hope that this will help me feel less fatigued. Today is the first day in several weeks that I’m not going to bed right after getting my night meds. Then again, I hope to get enough rest tonight anyway.

The Reading Residence

Vitamin B12 Deficiency: The Invisible But Treatable and Worryingly Common Disease

In the summer of 2012, I suffered from severe, persistent fatigue and episodes of lightheadedness. I went to my doctor, thinking I had iron deficiency anemia once again. My hemoglobin was always normal, but the ironn itself, which is necessary in the production of hemoglobin, had often been low. This time around, however, the cause of my fatigue was vitamin B12 deficiency.

Vitamin B12 deficiency is relatively common but used to be underestimated. It affects between three and six percent of the population, becoming more common as people age (Allen, 2009).

Vitamin B12 deficiency is usually diagnosed through a blood test. A deficiency is defined as a serum level of B12 below 148 pMol/L or 200 pg/mL (Allen, 2009). My level at the time was 120 pMol/L, which my doctor said was “not very low”. This may be so – I have met people on the B12 deficiency foundation forum with levels of 25 or less -, but it’s still cause for concern. Besides, my methylmalonic acid (MMA) was also elevated, which Allen says is the “gold standard” for diagnosing B12 deficiency.

Symptoms of B12 deficiency can be diverse. I only had tiredness and lightheadedness, but you may also experience rapid heartbeat or breathing, pale skin, sore tongue, weakness, an upset stomach, diarrhea or constipation. If B12 deficiency is not treated, it could lead to nerve damage. In fact, Chris Kresser, a natural health specialist, thinks that some symptoms common in the elderly, such as cognitive decline and lessened mobility, may in fact be due to untreated B12 defieciency. Kresser also cites a much higher prevalence than Allen, but this seems to be due to bias.

It is the Dutch B12 deficiency foundation’s position that, unless you’re eating strictly vegan, the cause of B12 deficiency is most likely malabsorption and you need to insist on injections. Malabsorption can, according to WebMD, be due to various causes, such as atrophic gastritis (where the lining of your stomach becomes very thin), pernicious anemia, Crohn’s or Celiac Disease, etc. However, eating a vegetarian diet with few eggs or dairy, as I did, can also cause low B12 levels. I went with injections anyway because I hated the taste of the tablets.

It is also the B12 deficiency foundation’s position that measuring serum levels after you’ve been using injections, won’t be useful. In my case, I was given blood tests after the round of injections anyway, and these showed my B12 level was elevated in fact. It dropped to normal within a few months and stayed within the normal range until at least my last blood test in December of 2013. I eat meat again, so it could be that my low consumption of animal products, even though I wasn’t strictly vegan, was causing me to have a B12 deficiency.

Reference

Allen LH (2009), How Common Is Vitamin B12 Deficiency? American Journal of Clinical Nutrition, 89(2):693S-696S. DOI: 10.3945/‚Äčajcn.2008.26947A.

Undiagnosed Symptoms Are Just as Real #IIWK13

Just a few weeks ago, I found out about this year’s Invisible Illness Week, which starts today. I already heard of it years ago, but never quite took the time to write for it. Until now. Today, I want to share my experience to get awareness of what invisible illness is like, and especially, how it can take years to get a proper diagnosis (and hopefully treatment).

I have suffered from my symptoms, which include fatigue, random aches and gastrointestinal symptoms since 2007. I went to my doctor for the first time in late 2007, having had diarrhea on and off for half a year. She chalked it up to a stomach bug. Then, when I got it through to her that it’d been going on for months, I was examined and the doctor found I was actually constipated. Well, nice. Drink lots of fluids, eat lots of fiber, but the symptoms did not go away. I was eventually put on a laxative, which worked to some extent but gave me bad cramps.

For the fatigue, I got various blood tests and these revealed iron deficiency, then B12 deficiency, then nothing. I was told that the random aches were just stress. Not that this makes them go away, but oh well.

My symptoms are still there, and I don’t have a diagnosis, although I self-diagnose as having irritable bowel syndrome, because I honestly don’t buy into the constipation theory. I feel out of place in the chronic illness community not having a diagnosis, and of course I want my symptoms to be something simple that isn’t a chronic illness. Then again, it’s not like symptoms are less real just because they don’t have a label to them. Many people, like myself, take months to years to go see doctor, longer to see the right doctor, and maybe I’ll never find out what’s really going on with me or get adequate treatment. Maybe I will at some point. I hope so.