CFS and POTS: What Works for Me

For most people, New Year's is a time to celebrate and make resolutions for the year ahead. For me, it marks the anniversary of becoming sick. I have have been sick for five years. At first I thought it was just a transient illness. After two doctors and many blood tests, Ross River Virus was suggested, but that diagnosis didn't hold up to further tests. Much later, the doctors grudgingly admitted the label that I knew was the only one that fit - Chronic Fatigue Syndrome (CFS). I guess I should consider myself one of the lucky ones in that some of my symptoms have improved to the point that I don't really meet the criteria for a CFS diagnosis anymore (depending of course, on exactly which criteria you use), and I think I better diagnosis for me now would be Postural Orthostatic Tachycardia Syndrome (POTS). I haven't officially been diagnosed with POTS, and I only realised that I had it about a year ago, but my heart rate can more than double going from lying down to standing up.

But even though I have made some natural improvement over the course of the last five years, I'm definitely also managing my symptoms a lot better. It's taken me all this time to really figure out what works for me and what doesn't. So I thought I'd share my experiences in the hopes that it might help someone else.
Standard Treatments
Graded Exercise Therapy (GET): This gets hugely promoted by doctors and gets a really bad rap from patients. It's backed up by research, but all of the studies are hugely flawed and largely irrelevant to anyone who actually has CFS. I've never taken part in an official program, but I've tried to exercise regularly a few times, and always given up fairly quickly because it's caused me to crash. There's nothing wrong with exercise (it helps to prevent a vicious circle of deconditioning), but any program which expects you to exercise during a crash is never going to work. GET is doomed to put you into a perpetual cycle of crashes and therefore make CFS worse.

Cognitive Behavioural Therapy (CBT): Like GET, this a treatment option that doctors like to recommend and patients like to criticise. In this case though, the criticism needs some clarification - the bad kind of CBT is based on the premise that CFS is a psychosomatic disorder and you can make it better if you only realise that you're not sick. Since the premise is clearly rubbish, that kind of therapy is never going to work (like with GET, a lot of the evidence comes from research with people who don't actually have CFS). But CBT can help with any kind of maladaptive thought or behaviour. Last year I went to a psychologist who said up front that she couldn't cure my CFS. Instead we worked on problems like my belief that since I'd got sick I was procrastinating too much, and if I was only more productive I would feel better. Together we figured out that I procrastinated just as much before I got sick, and that I got a lot more out of resting or doing 'fun' things than in mostly futile attempts to get things done (note that this is pretty much the opposite of what bad CBT tries to teach you). Ironically, once I stopped putting pressure on myself to achieve things, I was able to relax about the whole process and get more done in the long run. So I would recommend CBT, as long as you can find a psychologist who is willing to work on coping skills rather than trying to 'cure' CFS.

Pacing: Most people who actually have CFS recommend pacing as an alternative to GET or CBT, although there's no real scientific evidence backing at up (probably for the same reasons that there is evidence for GET and CBT - the research is done on a group of people who have a different problem to CFS). Pacing seems to mean different things to different people, though. In some places I've seen pacing used to mean keeping your activity levels stable from day to day, and to me that seems a little too close to GET. For me, pacing means listening to my body. My body knows when I'm capable of going for a walk or going to the shops or going to work and when I'm not, and I can maximise what I do and minimise crashes by following what my body wants. It's only really been in the last year that I've had enough awareness of the signs my body gives me to do that though. So while I think that at the moment, pacing is one of the most important tools I use to reduce my symptoms, in the earlier stages of CFS I would instead recommend resting as much as possible.

Pharmacological Treatments
Until I started writing this I didn't realise how many different supplements and medicines I've tried over the last five years - and how few of them have worked.

Multivitamins: I started taking multivitamins not long after I got sick, primarily because I was living away from home and not consistently eating well. Now that I'm back home and being fed a balanced diet by my mum, I've dropped the multivitamins and it's made no difference to my symptoms.

Magnesium: I tried this quite early on, on a doctor's recommendation, since it's supposed to help both with CFS and certain sleep disorders, but it made no difference to my sleep or any other symptoms.

B12 and B-complex: Tried both of these variants to no success. I've heard success stories about B12 injections, but my doctor wouldn't give me any because I don't have a deficiency and he says they only make you feel better temporarily without addressing the underlying problem. Given that there isn't a solution to the underlying problem, I'd be quite happy to settle for temporarily feeling better, but clearly my doctor doesn't agree...

CoQ10: This seems to be recommended quite regularly on websites, but it made no difference for me.

Fish Oil: This is supposed to be helpful for both fatigue and joint pain, but I didn't find it helpful for either. Like the multivitamins, I suspect this is more helpful for people who don't eat well.

Vitamin D: I've been taking this for a while since I came up as deficient on a blood test (not really a surprise as I get little exposure to sunlight). I don't find it helps any of my CFS symptoms, but I will keep taking it for as long as my sunlight exposure is low, because Vitamin D deficiency can cause all sorts of problems.

Vitamin C: A few people recommend mega-dosing Vitamin C for fatigue and boosting the immune system. But I didn't notice any difference on it, and it doesn't taste great. Like the Vitamin B12, perhaps this needs to be done as injections to have a noticeable effect.

Iron: My iron tests came up a little on the low side in my last lot of blood tests, so I tried supplementing iron for a couple of months, but again it made no difference to any symptoms. I wasn't expecting any improvements since the drop in iron wasn't associated with any worsening of symptoms, but I'm willing to try just about anything.

Painkillers: When muscle and joint pain were a regular part of my array of symptoms, I took a Panadol every day, and it certainly helped with the pain. Now that my pain symptoms have improved, I take painkillers on an as-needed basis.

Tricyclic Antidepressants: I tried a low dose of the tricyclic antidepressant imipramine before bed for a while to help me get to sleep, but didn't find it helped.

Valerian: I also tried this as a sleep aid, but like the tricyclic antidepressant it didn't make any difference to my ability to sleep.

Doxylamine: This is very effective in getting me to sleep, either on it's own (e.g., Restavit) or together with painkillers (e.g., Mersyndol). I wouldn't want to take it regularly, because it tends to make me dopey in the morning and I'm not convinced I get great quality sleep with it, but it's great when something specific is keeping me awake (pain, stress) or when my body clock is particularly out of whack.

SSRIs/SNRIs: About six months after I got sick, I started to get a bit depressed about the realisation that I probably had CFS rather than an acute illness, and that my chances of a full recovery were pretty slim. My doctor prescribed fluoxetine (Prozac). Initially I think it helped me deal with things, but I subsequently changed doctors, and it took a long time to convince the new doctor that antidepressants weren't going to help me feel less tired. Instead we tried an increased dose of fluoxetine, which gave me night terrors pretty much every night (something which certainly didn't help my fatigue), followed by switching to desvenlafaxine (Pristiq), before she finally accepted that I no longer needed antidepressants. I probably ended up being on them for two years longer than they were helpful for. Interestingly, I didn't find they had any effect on my anxiety levels either (while I'm sure that I've never had actual clinical depression, I don't doubt that I have mild anxiety, which predates the CFS).

Diet
Low GI: I've tried low GI diets on and off for a while. They certainly help me lose weight, but I don't find they make much difference to my energy levels, and I don't have the willpower to avoid doughnuts for long. I find that paying attention to what my body is craving is much more useful, because a craving for a biscuit quickly turns into eating three rows of chocolate if I try to ignore it.

Gluten-free: Like the low GI diet, this quickly runs in to the problem of ruling out doughnuts. However I have tried a strict gluten-free diet and it made no difference to me. Other members of my family (who don't have CFS) swear by gluten-free though, so I think it's very much an individual thing that is worth trying out for most kinds of chronic conditions.

Alcohol: I've never been a big alcohol drinker, and I cut down even further when I started on antidepressants. Even now that there's no potential interactions to worry about, I find that even 1-2 standard drinks can cause me to crash, so I'll indulge occasionally, but I'm always prepared to write off the following day if necessary.

Caffeine: I've always had a strange relationship with caffeine. While too much (3-4 cups of coffee in a day) will make me jittery, it's never caused me problems going to sleep. On the other hand, as little as one glass of Coke will give me withdrawal symptoms (as a teenager, I used to always get headaches on Mondays until I switched my weekend Cokes to caffeine-free). I didn't really drink coffee at all until I got sick, when I found that a cup of coffee at morning break helped me make it through the day. Last year I tried cutting out caffeine altogether, but while it meant no withdrawal symptoms, I also found I lacked energy in the morning. Now I'm back to drinking one cup of coffee every morning, and another if I'm feeling a little flat later in the day, and I'm finding that's the best balance for me.

Hydration: I've always drunk a reasonable amount (although I'm not a fan of water so most of my liquid intake is diet cordial), but since I've been sick I've been more hesitant to get up to get a drink (it's only since I've figured out I have POTS that I've realised my vague reluctance to stand up is due to a very real physiological effect). Plus, although dehydration is not a huge factor in CFS generally, it is a big contributor to POTS symptoms, so I've been paying this a lot more attention recently. I haven't consciously tried to increase my liquid intake. Instead, I keep a whole bottle of cordial next to me rather than just a cup, and take a bottle with me when I go out, and then just drink when I'm thirsty. That's been enough to keep my liquid intake at around 2-3L a day, and I think I feel better for it.

Sleep
Sleep Hygiene: While some CFS guidelines are pro-GET and CBT and others are against them, pretty much every set of guidelines or recommendations I've seen suggests improving sleep hygiene as a first step for improving sleep quality. I'm not sure whether it's because the recommendations are written by people who don't actually have CFS, or whether they are actually helpful to some subset of people with CFS, but I find most sleep hygiene guidelines to be laughable. For example - going to bed and getting up at the same time every day - I need twice as much sleep on a bad day as on a good day. Plus, the amount of time it takes me to go to sleep varies hugely, and if it takes me two hours longer to go to sleep I need to sleep two hours later to make up for it. Another common recommendation is to keep your bed just for sleeping - I often need to rest lying down without actually sleeping, and the bed is by far the most comfortable place to do this. The recommendation that I find the most idiotic is the suggestion that if you aren't asleep after 20 minutes to get up and do something - I don't think I have ever in my life fallen asleep within 20 minutes, and getting up achieves nothing but to start the whole process over again. I have tried all of these in the vague hope that the experts knew something I didn't, but keeping "good" sleep hygiene habits consistently makes me sleep worse and feel worse.

Naps: This is really a sub-category of sleep hygiene, and I feel the same about it as I do about other sleep hygiene recommendations - I'm pretty sure that the people who make the recommendations have never had any kind of sleep disorder. Some people recommend no naps at all, while others recommend a 20-30 minute nap in the early afternoon. I wonder whether they make the same recommendations for babies? If you need 15 hours of sleep a day, it doesn't make sense, either biologically or socially, to do it all in one session. And when it takes an hour or more to get to sleep (and another half hour to an hour to fully wake up if I'm woken up by a person or alarm), a half hour nap is a waste of time. The early afternoon part seems silly to me too, but if you consider that as being relative to normal/healthy sleep cycle rather than an absolute time it makes more sense. For a while I was convinced that having a nap every afternoon was the way to go, but a bit of experimentation showed that I'm better off only having the nap when I'm particularly tired, since napping when I'm not tired does impact on my ability to sleep that night. So if I'm fading fast by 3:30 (or by the time I get home from work), I head to bed, usually waking up on my own in time for dinner.

Bright Light Therapy: I tried bright light therapy fairly early on, while we were still ruling out an underlying physical sleep disorder. While I was doing the therapy I did wake up earlier, but I felt worse, and once I stopped using the light I slipped pretty quickly back to my old sleep pattern. The process made me a little more sensitive to when rolling over and going back to sleep was a good idea and when it was really time to get up, but I suspect there would have been easier ways of achieving that.

Sleep Diary: A large part of the CBT I did was centred around sleep, and mainly involved keeping a record of how much and how well I slept, how I felt during the day, and looking for patterns. Mostly what I found is that there weren't many patterns, but that turned out to be really helpful, because over time I'd built up an increasing amount of anxiety about sleep. I'd lie in bed worrying that if I didn't get to sleep quickly enough I'd crash the next day, or I'd worry that if didn't have a nap I'd crash the next day, or that if I did have a nap then I wouldn't be able to sleep at night and would crash the next day. In the end, the amount of sleep I was getting didn't really affect my symptoms, but the amount I was stressing did. Keeping a diary helped me to stop stressing about sleep, and I think that has been the single biggest thing I've done to make myself feel better. Whether a sleep diary (or more generally an activity diary, or a food diary, etc.) shows you something you can change or just helps you relax about the whole affair, it can make a big difference in the long run.

POTS-Specific Treatments
Sitting/Lying Down: The easiest and most reliable way to reduce my symptoms (especially the lightheadedness) is to lie down. Although I was aware of this before I realised that I had POTS, understanding the reason why lying down makes me better makes me feel less guilty about doing it. If I'm not feeling great, I just lie down and read or use my iPad. Sitting down, while not as good as lying down, is still much better than standing up, so if I'm having a bad day I sit myself in front of the computer and stay there for as long as I can. Even worse than standing up is bending over, so I try to reserve tasks that involve a lot of bending (e.g., filing, trying on clothes) for my best days.

Temperature: Another factor that has a huge impact on my POTS symptoms is the temperature. Realising that I had POTS explained why I feel so much worse in the summer (especially over the holidays, since the office is nicely air-conditioned). So last year we replaced the portable air-con I had in my room with a wall unit and so for it has made this summer much more manageable.

In Summary...
In general, the recommendations that doctors make are fairly useless. I would avoid GET, any CBT that treats CFS as a psychosomatic problem, and any sleep hygiene recommendations that go beyond common sense. Medicines and supplements are appropriate if you have a diagnosed deficiency or to treat specific symptoms, but there are no magic cures for CFS. Diet is very much an individual issue, and avoiding any specific intolerances may improve CFS symptoms. I would generally limit alcohol intake. If you have POTS, then drink lots, stay cool, and sit or lie down when symptoms get bad. In the early stages of CFS, it's important to rest as much as possible. Then, as you become more aware of the signals that your body sends you, listen to your body, and do whatever makes you feel best.

Happy New Year!