Letter to a Friend

Hi there Mark,

(snip)

I am sorry to hear your diagnosis of FMS. It is a horror condition – it took about 10 years for me to be diagnosed (even as a child I had ‘growing pains’), and coupled with the other things I have wrong, the pain is multiplied. I am also suffering from depression (diagnosed postnatal but again, I have had it for years) so the tablets for me are a double blessing – they keep my mood on an even keel, and help me sleep (which is good for the FMS). My FMS primarily presents as multiple joint pain, inflammation and swelling, as well as problems with my tendons and ligaments and bursae. But I also have skin sensations (it feels like someone has put dry ice on the backs of my hands), brain fog (not being with it, extreme forgetfulness) and fatigue (needing to collapse on the lounge of an afternoon). I have digestive problems (ulcers, reflux and excess acid production, which has affected my teeth), and I also grind my teeth of a night time (which has caused the enamel to wear off my back teeth – FMS also leeches calcium from your teeth first, which can cause enamel problems), and I get bad hay fever (and even when I don’t have hay fever, I have a blocked or runny nose and gunky eyes). Muscle twitches, panic attacks, Raynaud’s (cold and blotchy hands), and flare ups in bad weather also drive me mad. There are so many symptoms that go hand in hand with FMS, or that can be directly attributed to it.

Before I fell pregnant with Erin I was taking Epilim by itself, and it took the edge off the pain. I suspect if I had have taken them for longer they’d have worked better, but you can’t take them when you’re pregnant or breastfeeding, and I have not gone back to them once I stopped. You don’t have to take them with anything else – they are actually a medication for epilepsy, but doctors discovered that they inhibit the chemical in your brain that ‘feels’ pain, so after a period of time your pain sensations are lessened. Being male, you can’t get pregnant or breastfeed, so I’d definitely give them a go for a few months and see what happens. You’ve got nothing to lose, and everything to gain.

I now take painkillers for flare-ups, and I deal with the day to day pain without medication. I am on tablets for insulin resistance (I have PCOS) and that helps with the brain fog and forgetfulness, so I’m only on two medications at the moment. I usually take digesic but I am currently out of them, and I have endone but they are not doing much good (apart from helping me sleep). I used to take tramadol, but you can’t take it with Zoloft, unfortunately.

I am on Zoloft (the antidepressant, or AD) and although it is not addictive as such, I am a little scared to come off it, as I don’t like how I was before I was taking it. I was a bit of a mess, and I feel so much better on it, so there’s no real reason to stop. You can even take it when you’re pregnant and breastfeeding, which is good. You don’t have to take them with the Epilim. But, if you’re on antidepressants, DON’T stop them suddenly – you need to start and stop them gradually, and any changes to your dose need to be monitored. You can get a rush of symptoms when you alter the dosage, so see you doctor if you want to stop them. But it is not addictive like cigarettes or heroin ha ha.

As for getting sleep, I don’t know what you’ve tried so I’ll pretend you’ve tried nothing yet.

• Warm milk works, and we have a milk additive here called Horlicks – it is a malted barley drink that can help you get to sleep (you put it in warm milk), you might have something similar over there.
• You can get herbal medications, but if you’re on ADs you need to check with the place you get the herbal medicines from (for example you can’t take St John’s Wort with ADs) .Valerian is good for sleep.
• Limit afternoon naps to less than 40 minutes, and try not to nap at all.
• If you are in bed and can’t sleep, get up and sit in dim lighting for a little while, then go back to bed when you start getting tired. Lying in bed when you can’t sleep is not only frustrating, but counter productive.
• If you need to get up during the night because you can’t sleep, read a book quietly (don’t put on the tv) and don’t get too stimulated.
• Don’t go to bed if you are not tired, but when you feel tired (even if this is earlier or later than your normal bedtime) – don’t go to bed at 10pm just because it’s your normal bedtime.
• But don’t vary your bedtime too much – try to get a good 9 hours, between the same times (don’t go to bed at 9pm one night and midnight the next, try to keep to the same hours). My Mark can’t go to bed early because, well, “It’s too early”, even if he is dog tired. He thinks he needs to sit up until 11pm!
• No alcohol or caffeine before bedtime (some people suggest three hours before bed) and no physical or strenuous activity.
• No computer and television – turn them off a bit before bed.
• And the bed is for sleep (and sex ha ha) – don’t read or watch tv in bed.

Exercise is highly recommended for FMS, but it is easier said than done. I am normally too tired or too sore, although I know if will help a lot of other conditions I have.

Anyway this got a little long – I only just said to my Mark you forget how much you know until you need to remember it. I hope you managed to read this far, and I hope even more than you got something out of it.

All the best for a great New Year and 2008. Please, feel free to write any time. I have a business writing content and articles for websites, so if I don’t know the answer, it normally takes me only a few seconds to find it!

L