My experience with Restless Leg Syndrome

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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