Archive for July 2015

My experience with Restless Leg Syndrome

July 22, 2015

Believe it or not, the cat is the one who made me realise that I have Restless Leg Syndrome.  It had built up gradually over the years, I suspect, and I was used to the fact that I would have an irresistible urge to move my legs around while I was in bed at night.  It wasn’t until we were curled up watching TV one evening, with my legs up on the sofa and the cat sitting on them, that I realised that I really, really wanted to move my legs, but I couldn’t without disturbing the cat.  (It is amazing how much humans will do in order to avoid disturbing the cat.)  Then I thought, it’s the evening, I’ve got my legs up, I have that horrible urge to move them, hang on a minute, I know what this is!

RLS is a tricky disorder to treat.  All of the medication options are the sort of drugs that are not to be taken lightly, with a high rate of side-effects and/or tolerance/withdrawal problems.  The doctor tried me on ropinirole, which affects dopamine levels, but oddly enough it just made it worse.  Anti-epileptics such as gabapentin (Neurontin) or pregabalin (Lyrica) are popular, but I hadn’t done well when I was tried on gabapentin for nerve pain, and the horrendous withdrawal I experienced from it is actually when the RLS started.  Opiates and opioids are also commonly used.  I haven’t been able to tolerate opiates such as codeine since I had my gallbladder out in 2012, and while I do take the synthetic opioid tramadol for pain, I can’t use it at night.  Benzodiazepines are another option.  Those work for me, and I often use diazepam as a muscle relaxant in combination with tramadol for pain as well as very occasionally using temazepam for insomnia.  However, I wouldn’t want to take them every night due to the very high risk of tolerance, which is where they stop working unless you keep raising the dose, so that eventually you end up on a sky-high dose of a drug that’s no longer working and have a hellish withdrawal to go through.

Thankfully I was in a good RLS group on Facebook where people discussed iron.  (Well, mostly a good group.  It was prone to people barging in trying to sell quack products such as copper bracelets, but they were eventually dealt with.)  It turns out that RLS can be a symptom of anaemia, and iron supplementation will relieve symptoms for a substantial number of people.  One of the irritating things about having ME/CFS is that so many of its symptoms overlap with those of other conditions, such as anaemia, and another irritating problem is that this makes doctors far less likely to go through the diagnostic procedures for other conditions.  They just wave you away with “it’ll probably be the ME”.  I had the symptoms of anaemia written all over me, but fatigue hardly looks unusual when you have ME, and I was getting doctors telling me that it was perfectly normal that my lips kept turning blue!  Interestingly, my new dentist has been spotting various signs that I’ve had anaemia, so I’m glad someone can notice it.

The next problem is that doctors are willing to run blood tests, but the NHS reference ranges for anaemia are on the wimpish side.  In most countries, they will take action if your ferritin (iron stores) is below 25 or 50mcg/L, even 75 in some countries.  In the UK it’s a mere 12.  Mine was 21.  We were stalled until a kind person from the RLS Facebook group sent me an article about how your ferritin should be over 75 if you have RLS.  I printed it off, sent it to the GP, and she prescribed iron tablets at last.  For some reason she initially put me on one 65mg tablet of ferrous sulphate a day, and when I checked with the pharmacist, she said that this was the maintenance dose, the therapeutic dose was three tablets a day.  I raised this with a GP, who muttered something about how they hadn’t wanted me to get constipated. I assured him that I was capable of working with that particular side effect (which never happened anyway) and really did need to have this treated, and he put me on the correct dose.

Finally, I had something that worked.  Looking back, it’s not surprising that I was anaemic.  I am on two medications, ranitidine and omeprazole, that wipe out my stomach acid, so I don’t absorb nutrients as well.  I had no idea this was the case until I had tried a low dose iron supplement, experienced absolutely epic farting on it, posted on a health forum to see if anyone had ideas, and someone there who’s a nurse explained to me about the low stomach acid problem.  Once I started taking digestive enzymes, which also have a bit of betaine hydrochloride in them, that sorted out the farting issue, and I am extremely glad I had that under control before I started on the prescription level of iron, which is nine times as much!

This, by the way, is why you shouldn’t attempt DIY iron supplementation.  The amount you can buy in multivitamins and such is too low to have any effect on a serious problem, and the prescription level is not something you’d want to be taking unless you really need it, as too much iron is bad for you as well.  So go and get your ferritin tested if you think you may have low iron stores, make sure they tell you the exact result, and argue you it if you have to.  (I can’t find that article about preferred ferritin levels in RLS just now, but this website discusses it to some extent.)  If you do end up on iron, it’s commonly agreed that you should be supplementing with Vitamin C as well, partly to increase iron absorption and partly because it can help counteract the constipation that iron pills may cause.  The NHS doesn’t supply that part, just as they don’t help out if you have low stomach acid, so you’ll have to find it yourself, but Vitamin C is cheap and easy to sort out.

Once my ferritin levels were testing as being above 75, the GP suggested that I go down to one tablet a day as a maintenance dose.  The RLS promptly returned, but it went away again when I changed to two tablets.  Presumably I need a higher maintenance dose because of the low stomach acid issue.

As for the cat, she was eventually persuaded that someone who changes position at night as much as I do will never be a good nighttime cat mattress, whereas my partner sleeps like a log and is thrilled to have her roosting on his ankles.  I get plenty of kitty snuggles in the daytime, never fear.

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Eye masks

July 20, 2015

Here’s how not to use eye masks: get one that’s too tight.  Yes, it stays on better, but then you end up at the optician’s complaining that you have hours of blurry vision every morning, due to the pressure on your eyes.  At least, I did, and I felt like a right noodle once I realised what was most likely causing it.  The offending eye mask was one by Muji which seems to have been withdrawn by now, and had strange double straps that were meant to go around your ears and didn’t.  Perhaps it was too small for everyone, since I’m a small woman and anything that’s tight on my head is unlikely to fit that many people.  Their current models look a lot more comfortable.

Eye masks are the sort of thing where there is a great deal on the market and you can usually find something to suit your taste.  In the past I’ve relied on blackout curtain linings instead, but I now have a partner who prefers to have some light coming through in order to wake him up in the morning, so this was the easiest solution.  My own preference is for cotton, soft and flexible, and I wanted something more substantial than the standard cheapie ones.

 Lewis Clark eye mask

After reading Amazon reviews and noting many complaints that dark coloured eye masks would bleed colour onto the bedding, I bought the Lewis Clark eye mask, which comes in a variety of colours.  It’s currently £13.99.  Years of early exposure to “girls must like pink” have caused my attitude towards pink to be ARGGH GET IT OFF ME, so I plumped for the turquoise, which is more of a soft sea green.  The bedding remains unharmed, and it’s a colour which I can spot when it’s fallen off and hidden in the covers somewhere.  The drawback with a lighter colour is that it isn’t a complete blackout mask.  They should look into a layer of dark fabric in the middle, as the inside is a lightish grey.  You don’t really notice unless the room is quite brightly lit, though.

After the business with the eye mask that was too tight, one of the most alluring features of this mask was that it has an adjustable strap.  It’s a good wide piece of elastic, too, unlike the narrow stringy things on cheaper eye masks that stretch out before long.  The mask still falls off my head every now and again, but I suppose nothing is perfect, and I’ve always managed to hunt it down again in the morning.  The cover is a soft plush, the inside is comfortable even for my ultra-fussy skin, it feels breathable rather than sweaty, and the sort of flap at the bottom does a reasonably good job of blocking out light that might seep in around your nose.

To be honest, if you want something that offers a complete black-out, you probably need the sort of rigid eye mask that looks like you’re wearing bulbous goggles.  I’ve had one of those and found it rather uncomfortable, although not as uncomfortable as my partner did when it collided with his face!  No one wants an eye mask that threatens to leave bruises if you happen to have a sleepy snuggle, after all.  So I reckon this is a good compromise between blacking out the light completely, comfort, and not leaving peculiar bluish stains on my bed linen.

Rating: 4 out of 5.

I’m still alive!

July 20, 2015

Well, it’s five years on, and I’m still using darkness therapy to keep to a 24 hour sleep pattern.  My sleep quality varies, as it always will for someone with ME/CFS, but being able to keep to a good bedtime is something I’m profoundly grateful for.  Chronic pain is a bigger part of my life these days, and for one reason or another I don’t have any pain medication I can use at night, so sometimes that’s a factor in my sleep problems.  I also turned out to be anaemic, something I only realised after developing Restless Leg Syndrome.  It’s always advisable for people with RLS to get their ferritin levels checked, and if their ferritin is below 75 (which is higher than the NHS reference range for preventing anaemia), to get it treated.  Thankfully the iron supplements cleared the RLS right up.

In other changes, I broke up with my former partner three years ago, and am about to celebrate my second anniversary with my lovely current partner.  He came with a ridiculous and adorable cat whom I am equally devoted to.  I could happily blether on about the pair of them for some time, but to stick to the subject of this site, this does affect my darkness therapy routine in a few ways.

First of all, he actually likes using coloured light in the evening, he finds it relaxing, so we have a variety of coloured bulbs scattered about our two flats.  I’ve been using incandescents so far, but have started to experiment with fluorescents and have a colour-changing LED bulb on the way.   That string of red LED lights  which I never knew what to do with has finally found a home, taped up under my kitchen cabinets with a timer on.  It’s easily enough light for coming into the kitchen at night to get a glass of water, and you could even wash up by it.  String lights seem to fare best when set out in a long row.  I had tried just bundling them together to give an impression of a single lamp, but it wasn’t much use, and having them out in a row as they’re meant to be somehow seems to give off far more light.  LED bulbs are so low-wattage that I don’t mind just leaving them on overnight every night, even when I’m not there.

Secondly, he’s quite fond of the dawn simulator for when he has to get up for work, and prefers to have a fair amount of light coming through the window to help him wake up.  So the blackout curtain linings are off, and I am using a sleep mask instead.  The curtains do look nicer with light shining through them, especially if you need to draw them in the daytime for privacy.

With regard to the cat, I need enough light around the place for when her ladyship decides that she wants to rush around as if her tail were on fire just when we’re settling into bed for the night.  She has dedicated spots where she likes to roll onto her back and knock seven bells out of a wrestling toy I wave around for her, but she can dash around anywhere, really.  The red lights in my kitchen aren’t quite enough, since she’s very fond of hiding under the dining table, and she’s a small black cat to boot.  I’m thinking about the options for lighting that part of the flat better at night without having to turn on the overhead white lights.  Also there’s a nightlight by the litter box in my partner’s flat now, as you really don’t want to step in that when blearily wobbling to the loo in the middle of the night.

LED lighting has come quite a long way since I was last blogging, and there are some amazing things I’m longing to try.  There’s more interest in ways of avoiding blue light in the evening too, although it rarely translates to popular products on the market.  I have various shiny new things to review, and a few more on the way.