Good sleep hygiene

What is it? It's a set of principles worked out by researchers to try and get you the right amount of sleep for your needs. This website has distilled it into twelve principles for you, or you can get your information on what to do from trusty old Wikipedia. Or there's this one  or just google "sleep hygiene" and look for a website that describes it in a way that works well for you. One tip I've picked up along the way, but never tried is that jigsaws make a good thing to do if you've gone to bed, but are failing to fall asleep (providing you don't use too bright a light). Basically, you are looking for something that's absorbing, but not so captivating you want to stay up doing it even after you start feeling sleepy. Another top tip from my own personal experience is that if you go onto or increase your dose of meds that make you tired and/or sleepy, then you should reassess your bedtime and/or getting up time, as meds can change the amount of sleep you need.

Does it work? It's another one that won't get rid of your pain, but, if it succeeds in getting you more sleep (and you were getting too little before), your pain's likely to reduce. There's research that says people are more sensitive to pain when they haven't had enough sleep.

Who does it work for? People whose pain is affected by the amount of sleep they get (probably everyone) and who are able to improve the amount of sleep they get using the principles.
 
Who doesn't it work for? People already getting the perfect amount of sleep every day, people whose pain is completely unaffected by sleep and people who are unable to get any additional sleep despite applying the principles.

Yes, but I'm not sleeping enough because of the pain. Yeah, me too. And even with the sleep hygiene tips and amitriptyline, which increases my ability to go to sleep and stay asleep, my sleep is still disturbed by pain and I still often don't get enough. But as far as I can tell, the sleep hygiene tips do help me get more sleep than I would without them (even if sticking to them is sometimes a real nuisance). It's worth a trial run to see if the benefits outweigh the nuisance of the lifestyle modifications you need to make.

How much does it cost? Nothing. It's free, unless you have a lot of modifications you need to make to your bedroom to make it conducive to sleep, in which case, that's the cost.

Is there any evidence for it? There's evidence such as this that people are more sensitive to pain if they haven't had enough sleep. The same article mentions a study that proved that extending sleep length reduced pain sensitivity, albeit on a small sample size. Interestingly, this review of the literature says that sleep impairments are a stronger and more reliable predictor of pain than pain is of sleep impairment.
Rather less encouragingly, this article says though epidemiologic and experimental research generally supports an association between individual sleep hygiene recommendations and sleep at night, the direct effects of individual recommendations on sleep remains largely untested in the general population. Worse, I found this article that says sleep hygiene is normally not enough by itself to treat severe, chronic insomnia.
I suspect what we've got going on here in sleep hygiene is a mixture of theory-based medicine (as opposed to evidence-based medicine) and a collection of things individuals have told doctors worked for them. Basically, there's certainly not any evidence that these recommendations are bound to work for everyone. But there is evidence that lack of sleep is a problem for pain, and the sleep hygiene principles seem to be the best non-medical ideas currently available for increasing sleep. If they're not enough for you, you might also like to try amitriptyline, as, in addition to being used for chronic pain, it also has a sedating effect.

Are there any downsides? Good sleep hygiene involves lifestyle changes. Some of them are pretty minor (like getting up and doing a jigsaw if you can't sleep), but others are pretty major, like going to bed and getting up at the same time every day (what do you do if you usually need to be up at 7 am for work and need to go to bed at 10 pm to get enough sleep for this, but your usual social life involves drinking alcohol and/or staying up till 11 pm or midnight or later?). It's an extra imposition on a life that already has more difficulties and compromises than other people's because of chronic pain.My compromise is to do it, but make some modifications or not bother on some days because otherwise my social life would be even more limited than it already is. I still haven't worked out whether it's best to get up at 7 am on days after I've stayed out late, so I definitely don't get enough sleep, but don't get out of the routine or whether it's better to sleep in late, get enough sleep and risk changing my sleep pattern  - my body already tends towards a 25 or 26 hour sleep cycle as it is.


Are there any other upsides? It's drug-free and has no side effects.

Was it worth the effort? It's something I constantly debate. I do do it. Or at any rate, my alarm goes off at 7.15am every day and I try not to go back to sleep after that (which is difficult with my amitriptyline) and I try to go to bed at 10 pm or earlier. My current dose of amitriptyline means that I'm usually too tired to stay up longer and actually if anything I need more than the 9 hours of sleep I usually get. Without amitriptyline I probably only need about 8 hours a night, on the other hand, without amitriptyline it takes me much longer between going to bed and going to sleep, so my bedtime might not be quite as different as you'd think. Definitely my pain is worse when I have less sleep or am more tired and sleepy, but I find the bedtime and getting up time part of good sleep hygiene a real burden, as it is hard to juggle work, socialising and the 9 hours of sleep amitriptyline makes me need. Overall, my current judgement is still that it's worth the impositions.
 
Which principles of good sleep hygiene do you use? Does it work for you? Do you have any tips or workarounds?

Know your triggers

What is it? It's an approach I use to help me deal with my own pain. What I do is keep an eye out for what triggers my pain and then see if it does so consistently. I use this knowledge to make decisions about whether to avoid the thing or do it anyway and deal with the pain. I tend to cut out things I don't care much about entirely (like skipping or cycling) and restrict the amount I do of things I do care about or find ways to minimise the part that cause me problems (like gardening in shorter bursts and without digging and travelling on public transport to meet up with friends and trying to find more local things to do), so that I only have a limited number of nights I have to take extra meds or can't get enough sleep each month.

Does it work? It won't get rid of your pain, but it might help you reduce and control it. It might also help you better understand why you have pain on one particular day and how you can avoid getting as much pain on others and make conscious decisions about your preferred trade-off between doing things you want to do and minimising your pain. Remember, knowing something is a trigger for your pain doesn't mean you have to cut it out entirely. With knowledge comes power.

Who does it work for? People whose pain is affected by what they do or by the world around them.
 
Who doesn't it work for? People whose pain is completely unaffected by all environmental influences. This is actually unlikely to be anyone, as doctors keep telling me that everyone's pain is affected by the amount of sleep you get and stress.

How do I do it? When I'm in more pain than usual I start with the question: have I done anything differently today or yesterday? Here's a list of factors that I've heard medical professionals mention as pain triggers:

• not getting enough sleep
• stress/emotional distress
• (women only:) the point you're at in your menstrual cycle

Quite often we have no control over these factors (although I'll be writing more about strategies for managing sleep, stress and your menstrual cycle in later posts), but I find even knowing that I'm feeling particularly bad today for one of those reasons helpful, as if there's a reason I've got bad pain today (or have even had it for several of days), it's reassuring to know the trigger is unlikely to last forever and that this isn't necessarily a sign of a permanent deterioration.

Here's a list of things I've found trigger my pain:

• cycling or skipping or exercise that mimics these, but not exercise in general
• walking for more than 20 minutes (but usually only my knee pain and not one of the pains that stop me sleeping)
• consuming milk that isn't lactose-free (gut symptoms)
• digging the garden and topiary, but not planting things, providing I take regular breaks
• sleeping without a pillow under my knees
• having a laptop on my lap (my left thigh strongly objects to the pressure)
• using a mouse
• standing around for more than about 10 minutes 
• sitting or lying in less than optimum positions
• travelling on buses, trains or tubes for more than 20 minutes
• travelling on public transport at all in winter
• driving for more than about 60 minutes
• being a passenger in a car for more than about 3 hours
• cleaning the bath
• painting the walls or skirting

Notice how specific these are. I could just have concluded that exercise sets me off and avoided all exercise and I could have just concluded that dairy in general (or worse, all the usual food suspects including gluten, wheat, nuts and fish) set me off (I do actually also have a problem with nuts and fish, but not with every single one of the usual suspects plus also with some really unexepcted foods).

What actually happened was that I noticed that I was consistently having bad hip and lower back problems after I'd been exercising. I tried cutting out exercising as a whole (actually I went on holiday and didn't bother to exercise) and noticed that I was much better. But instead of permanently cutting out all exercise, I cut out the bits I suspected most (ones that involved my hips and lower back) and kept going with the rest, then noticed how I felt. After that I kept adjusting and kept adding things back in or cutting more things out until my pain felt no different or only minimally different after I'd exercised (I don't count normal pain after exercise here and fortunately I can feel the difference). I also concluded that contrary to government advice, I was better off doing my major exercise in only 2 long sessions per week rather than a smaller number of smaller sessions, so I only get 2 to 4 days of pain after exercise instead of 3 to 7, as I really don't like coping with that most days on top of my usual pain. The trick is to think "how can I do this differently? what are my other options?". Some of them might be worse for you, some of them will hopefully be better. Also, you may be able to work on some of your movement-based or postural triggers with physiotherapy, the Alexander Technique or just by generally strengthening the muscles that are causing the problem with exercises.

Your specific pain triggers will probably be different from mine, and some things that make my pain better might make yours worse (for instance you might be better off exercising in small sessions everyday rather than in 1 or 2 big sessions a week). But knowledge is power. Once you know what is going to put you in pain, you have a choice between avoiding it or choosing to do it anyway. You are under no obligation to minimise your pain. The trick is to live the best life you can with the cards you've been dealt.

Other tips:

• Don't beat yourself up if you can't work out some of your triggers. Some of them are really hard to work out and I sometimes realise mine months later after a lifestyle change has made me realise something I wasn't aware of was triggering pain (cycling was one of those because I'd previously not had a problem with it). I'll probably never work all of them out.
• A pain diary might help, especially to work out if your menstrual cycle is involved. My pain is extremely complex and fluctuates a lot throughout the day. I am, however, usually able to answer the question was today a red day (awful, struggling to cope), an amber day (lots of problems, far from a good day, but definitely not a red day) or a green day (no major problems, felt pretty OK) so I suggest keeping a paper record and rating your pain 1 = green/good day, 2 = amber/middling day, 3 = red/awful day. If you're a visual person you could use colours or  make a bar graph. You can compare this to your menstrual cycle or other things going on in your life.
• Once you have a suspect, change only that about your life and see if you notice a difference. Reintroduce it after a week or two as a double check.
• If your suspect is quite a big thing (e.g. exercise in general or food in general), see if you can narrow it down by reintroducing one thing (or one set of things) at a time. If you find a trigger within a set of things, it's even worth re-introducing one of those things at a time, because the aim is to have as many safe things in your life as possible and as few things it's best to avoid as possible.
• If it is possible, don't replace the thing you are cutting out with something else that isn't normally in your life. For instance, don't replace milk with rice milk or soya milk if you don't normally consume those, as if you continue having a problem you won't know if the thing you excluded (milk) wasn't the problem or if you have a problem both with the thing you excluded (milk) and the thing you replaced it with (rice milk). Just because many people have problems with thing A but not thing B doesn't mean you don't have a problem with both or neither or just thing B.
• Sometimes we can get a placebo effect from our brain's beliefs. This means you might cut something out that is completely neutral for you, but the placebo effect might mean you improve anyway. Actually, if you can benefit from the placebo effect this is great and realistically it probably doesn't matter if your body actually gets pain from cycling or your brain produces a placebo effect from you not cycling. Just try not to get to a situation where you only eat cabbage and water and move your left arm only on Tuesdays with a full moon. Try and be as specific as possible and cut out only the bare minimum, and if you have cut a lot out try reintroducing things occasionally (I regularly reintroduce milk that isn't lactose free whenever I have a cappuccino at a cafe, my guts let me know I still have a problem with it  every time).
• My pain onset is often delayed. If you're like me, everything you did in the 48 hours before the pain started is a suspect. Some things are obvious. For instance, I currently have pain in my thigh under my laptop. This happens consistently. What's less obvious is that my thigh and hip also typically experience more pain later in the day or at night after I've done this, often with a pain-free gap in between. Why, you may be asking, do I currently have a laptop on my knee? Laziness and choices. You don't have to choose to minimise pain every time, but I certainly wouldn't do it all day every day.

How much does it cost? Nowt. It's free.

Is there any evidence for it? I seriously doubt it. It's not something medical professionals I've met have encouraged, although it could just be that my googling skills were lacking. Remember, the fact that I say it works for me is only anecdotal evidence (which is a very poor level of evidence indeed). But also remember that there being no trials doesn't mean it doesn't work, it means there's no evidence either way.

Are there any downsides? It is possible that if you follow this advice that you'll end up paranoid and anxious and that the expectation of pain from an activity will in itself be enough to create the pain without any other stimulus from the activity itself.
I'm not generally an anxious person and I prefer living in a world where I get more predictable pain and make conscious choices about whether things that increase my pain are worth doing anyway and planning for easy days on days I expect an increase in my pain (for instance because of the time of the month). It also means I can manage my meds better. Because opiates stop working for me if I use them regularly for several months, limiting the number of days on which I need them to sleep is really useful for me and means I don't have to worry they're going to stop working.
However, everyone is different, so if you find that looking for triggers seems to be making you more anxious or making things worse, it's a good idea to stop doing it. Also, if you can't stop beating yourself up about not finding every single trigger, consider yourself exempted from carrying on. If this isn't making your life better it's not worth doing.
The other downside, even if this approach is generally successful for you, is that you can end up avoiding a lot of things and it can be very frustrating, and bring home to you the difference between your life and a healthy life.


Are there any other upsides? It's drug-free and has no side effects.

Was it worth the effort? It's not actually much effort for me (apart from the pain diary, which I confess to not ever having successfully kept for longer than a week and a half). I find myself doing it without much thinking about it. On my bad days, my brain quite often finds its way to the question "why?" and I find it much less distressing to answer the question "why today?" than "why me?".
 
What are your triggers? How do you work out what your triggers are? Does this approach work for you or does it make you feel worse?

Pillow under your knees

What is it? A pillow (or two) under your knees when you're lying down on your back, for instance to sleep. I find a firm pillow (or better still two) is much better for this than a soft one. Also, if you're lying on your side, switching the pillow(s) to between your knees can also help.

Does it work? Yes, if your pain is musculo-skeletal pain in your lower back or hips or thighs (or even pressure-sensitive pain in your heels). The theory is that having pillows under your knees while lying on your back takes the strain off your lower back by altering your posture and where you're putting the pressure. Likewise, having a pillow between your knees when you're lying on your side can improve how your body distributes pressure and take pressure off problem places. With the pain in my heels, I find that sometimes they're very touch sensitive and having two pillows under my calves when lying on my back allows me to hang my heels over the edge and not touch the mattress, thus alleviating any pain from pressure on my heels. It's also possible that changing where the pressure is when you're lying down like this may help muscle or skeletal pain on other areas, so might be worth a try.

Who does it work for? See above.
 
Who doesn't it work for? People whose pain isn't musculoskeletal and/or isn't at all affected by their posture or where they feel pressure.

Where can I get it? Anywhere they sell pillows - the Internet, bed shops, shops that sell bedding such as supermarkets or Argos or Wilko's.

How much does it cost? Free if you already have spare ones, otherwise the price of a pillow, such as this pair for £10 from Asda. Plus pillowcases if you don't already have spare ones, such as this pair for £2 from Asda. You don't need fancy, expensive pillows for your knees, although based on my own experience I do recommend getting firm ones. Alternatively, if you consistently sleep on your side, you may prefer a full-length body pillow like this one from Argos for £13.99, which already comes with its own cover. I don't think this would work for me, as I need to regularly change positions (including mixing up whether I'm lying on my side or my back) to sleep through the night, and a body pillow would make that harder, but if you consistently sleep on your side, this could be a good answer for you.

Is there a cheap or free version? You really don't need fancy pillows or attractive pillowcases, so if any of your family or friends is throwing pillows out and even pillowcases with largely aesthetic flaws, those would be fine, providing the pillows' level of firmness suits you. You could also use cushions instead if you needed. Rolled up towels or clothing are a reasonable emergency solution (for instance if you are staying somewhere with no spare pillows), but I can't recommend them as a long-term solution, they're not nearly as effective or comfortable.

Is there any evidence for it?  I couln't find any. The nearest I could get was an article saying an expert recommended sleeping with a pillow between your knees. If there's evidence either way, my search didn't find it, which means I couldn't find any proof that it's any better than placebo, but also I didn't find any proof that it isn't. The best I can do is tell you that not having a pillow under my knees means I'm significantly more likely to wake up with severe pain in my lower back in the morning. Me telling you this is only anecdotal evidence, so barely better than no evidence at all, but I can't see anyone bothering to do a trial, so this and the fact some experts recommend it is probably about as good as you're going to get. I suggest trying this for yourself with spare pillows or cushions if you have them, and considering buying dedicated pillows if it works and you need to. I noticed it worked for me on the basis of the following:

• with leg pillows I largely avoid severe lower back pain the next morning
• I don't wake up with my lower back in a position that is painful to get out of (I think the fact this happens to me without leg pillows may be a hypermobility syndrome thing)
• I think I find my position while lying in bed less painful (although not pain free)
• I think I may wake up in pain less often during the night (my pain fluctuates anyway and it's been years since I had to sleep without leg pillows, so I'm not 100% sure on that one, but I think it may well be the case)

Are there any downsides? Every now and then I get my leg pillows tangled in the duvet and have to sort this out in the middle of the night, plus the cost of the pillows. Plus, the bed looks like the princess and the pea sleeps there in the morning.

Are there any other upsides? It's drug-free and has no side effects.

Was it worth the money? Yes, absolutely, I actually get quite worried about what sort of state I'll be in the next day if I don't have access to proper knee pillows for any reason. It does, however, only save me from pain I would have gained during the night. It certainly doesn't solve all the pain I went to bed with or guarantee a pain-free night or a pain-free day the next day.

Do you use leg pillows? What level of firmness works best for you? Do you use a body pillow and would you recommend it? How did you work out if they were helpful for your pain or not?

Anticonvulsants – gabapentin (Neurontin) and pregabalin (Lyrica)

What is it? Two prescription drugs that were originally developed to treat epilepsy (hence the name "anticonvulsants" or sometimes also "antiepileptic drugs"), but have since been found to be effective on some types of chronic pain. It is a type of drug that you are supposed to take regularly and not as and when you experience pain, partly because you are supposed to start on a low dose and build up to a high dose, although as often turns out to be the case with me, I'm so susceptible to side effects that moving up to a higher dose causes me more harm than good.

Does it work? Yes, if you have the right sort of pain and possibly also the right sort of physical make-up. Trial data seems to suggest, that even among people with neuropathic pain gabapentin and pregabalin work for some people and not for others. I take gabapentin and I find it effective at reducing my pain. Unfortunately it often doesn't clear it entirely and it comes with some pretty strong side effects. My personal experience is that it works from within minutes of me taking a pill (right from the first pill) and that when I first went on it and whenever I go up to a higher dose, it is highly effective and reduces most of my pain to practically zero, allowing me to lead a normal life and do what everyone else can do, but after I've been on it for about a week, it stops being nearly as effective and I go back to having to make choices between doing things and sleeping at night. However, even in this less effective state it is still a major improvement over not taking it and sleeping is much easier.

Who does it work for? Gabapentin is recommended for various types of neuropathic pain. Pregabalin is approved by the FDA for diabetic neuropathy and fibromyalgia. Given the similarity between the two drugs and the fact that gabapentin is fairly cheap and pregabalin is highly expensive, an NHS doctor is likely to try you on gabapentin first if either of these drugs is considered suitable for you. I specifically have a diagnosis of "not fibromyalgia" for my pain - it doesn't meet the criteria on several fronts. This leaves the possibilities that either this means some or all of my pain falls into the category of "neuropathy" or gabapentin also works for pain other than fibromyalgia and neuropathy for at least one person (and therefore conceivably for other people). My guess (and it is no more than that), is that it calms down my central nervous system and stops it making such a big deal out of pain, and therefore prevents or reduces pain that is due to an over-reaction of my central nervous system, which would fit with the idea of these drugs working on neuropathic (=nerve or nervous-system-related pain). At any rate, if your pain is at a level where you'd really appreciate another drug-based option, it's worth asking your doctor if you can try gabapentin. In my view (based on my own experiences) you should know somewhere between immediately and within a week whether you find it helps - depending on how much your pain normally fluctuates, I initially attributed my experiences with gabapentin to natural pain fluctuation and only became sure it was what was making the difference when I tried to come off it.
 
Who doesn't it work for? Theoretically at least, anyone whose pain is not caused by neuropathy or fibromyalgia. However, I've found a paper that suggests that neuropathic components are present in 20-35% of people with low back pain, so just because your pain appears to have a mechical and nociceptive cause (nociception = responding to harmful stimuli), this doesn't necessarily mean that there's not neuropathic element to it. In other words, unless there's a reason not to, if your other methods aren't producing sufficient pain relief, trying gabapentin or pregabalin on your pain may be helpful. But don't forget to come off it again if it doesn't work, as if you have chronic pain, you have enough trouble without taking drugs with no benefit for you.

Where can I get it?  Both gabapentin (Neurontin) and pregabalin (Lyrica) are prescription only drugs, at least in the UK, the US, Canada and Australia, so you'll need to get a prescription from your doctor. A GP can prescribe gabapentin.

How much does it cost? In the UK, because they are prescription-only drugs they both cost a prescription charge for 28 days' supply or however much your doctor prescribes in one go (unless you get free prescriptions or have a pre-payment certificate, in which case it is free). In 2012 300 mg of gabapentin 3x a day costs the NHS £143.91 per year per patient because it is off-patent. On the other hand, pregabalin in any dosage cost the NHS £722.80 per year per patient because it is still in patent for use on pain until July 2017 in the UK and December 2018 in the US. From August 2017 onwards it is to be assumed that a considerably cheaper generic version will become available in the UK. Until July 2017, an NHS doctor is considerably more likely to try you on gabapentin than pregabalin and is only likely to let you try pregabalin if gabapentin is problematic for you.

Is there a cheap or free version? Nope, there's just the option of buying a pre-payment certificate to cover all your prescription meds in the UK. If you're in a country where you pay a non-fixed price for prescription meds, it's worth knowing that the gabapentin (the non-brand name for Neurontin) is considerably cheaper than Neurontin (you're paying for the brand name), pregabalin (still in patent) or Lyrica (the brand name for pregabalin), but this may change in July 2017 in the UK and December 2018 in the US, when pregabalin comes off patent (although the brand name versions are likely to remain significantly more expensive than the non-brand-name versions).

What about side effects? Oh yes, there's plenty of those for both gabapentin and pregabalin, although not everyone gets them. My symptoms aren't listed as common, leaving me unsure whether they're genuinely not common or whether this is just due to the reporting system for side effects (I explain to my doctor or pharmacist what side effects I'm getting that aren't listed on the pack, my doctor or pharmacist explains why I'm wrong, 10 years later the side effects turn up on the patient information leaflet). I get significant memory loss, specifically in what I call my diary memory. I can remember new facts (e.g. that the Dutch for belt is ceintuur), but have difficulty remembering both what I have done (when did I last meet my friend Julie? I remember that I have met up with her several times in the past, but not how recently or what we did last time) and for things I am planning to do (sorry I forgot to turn up when we agreed to meet). It is less bad for things I do regularly, I am more likely to remember them. The one other person I know on a similar drug (pregabalin) also has the same sort of memory loss. However, this is only anecdotal evidence, and may indicate nothing beyond the response of two people. The other effects I get from gabapentin are what got it on the Talk to Frank website about recreational drug use. When I first go on it or if I increase my dose, I feel warm and fuzzy and highly contented emotionally. I then feel spaced, like I'm not quite in the present and my emotions are not quite linked to what's going on around me in real time. I think this is probably all intended to be covered by the "euphoria" side effect listed on the pack. This feeling continues if I remain on a high doses, but goes away after a few weeks on a low dose.
It also reduces my anxiety. You would think this would be a good thing, but actually I was already a fairly unanxious person without the drug, so this reduction also plays out as a reduction in me caring about most things, which feels to me like a fundamental change in my personality to the extent that I feel like a different person (I was previously a person who cared a lot about people and things), although that doesn't stop me getting mood swings and bouts of anger (hard to tell if that's just me, a reaction to my none-too-easy life circumstances or actually the drug).

The absolutely worst side effect I get is a massive increase in pain on some days, which may or may not relate to be forgetting to take a dose, my memory loss means I'm often not sure if I've taken it or not. It is this that truly makes 300mg 3x a day unbearable for me, as the days of massive pain are at a higher level on it. Based on trial data, it is, however, highly likely that some people will not get side effects at all. A review of the trials found that only 6 people in 10 experienced some adverse events, including dizziness (2 in 10), sleepiness/drowsiness (1 or 2 in 10), peripheral oedema (swelling/accumulation of fluid), problems walking (1 in 10).
The trick is a) to monitor what changes when you take it and b) decide if it's worth it for the side effects and consider coming (back) down to a lower level of it or coming off it. My experience tells me that just because it's not listed on the packet and just because your doctor and pharmacist don't believe you doesn't mean it's not a side effect, and if something unpleasant consistently happens while you are on it and not when you aren't, it's perfectly fair to count that as a reason against taking the drug. For an explanation of why this system of thinking isn't perfect see this article on the nocebo effect, but it's the best rule of thumb I have (especially after years of taking drugs that had bad side effects on me because I believed my doctors when they explained they weren't really side effects).

Is it addictive? What about withdrawal symptoms? It depends what you mean by addictive. If you mean, will you be so desperate to get your next fix of gabapentin or pregabalin that you'll steal money to fund your habit and you'll need an ever higher dose just to feel the same, then no it's not addictive (although for me the benefits of an increased dose quickly taper off, leaving only the side effects to endure). However, if you come off a high dose of it suddenly, you are likely to experience withdrawal symptoms (this is what doctors call being physically dependent on a drug rather than addicted to it). I accidentally misplaced my meds while abroad while I was on 300mg 3x a day (as I've mentioned, in my case it comes with a side helping of memory loss). For me this resulted in me not sleeping for 36 hours - it might have been longer had I not remembered where I'd put them and taken one. Here is a list of withdrawal symptoms for gabapentin:
* anxiety
* insomnia
* nausea
* pain
* sweating
* temporary increase in seizure symptoms
This makes me think that a) the days when I get a massive increase in pain are probably the days when I've forgotten a dose (and forgotten I've forgotten it) and could probably be countered by taking an extra dose and b) that it's far more sensible to come off slowly than fast. The recommendation is that you talk to your doctor so that you can come off it gradually. After years of going cold turkey on drugs that give you withdrawal symptoms, I can thoroughly recommend coming off things slowly. It does make a world of difference.

Is there any evidence for it?  Yes. One randomised, placebo-controlled trial of more than 100 patients per treatment arm found that 1800 to 3600 mg per day of gabapentin was effective and well tolerated in the treatment of adults with neuropathic pain. A review of the research found 37 studies of reasonable quality with 5633 participants testing gabapentin against placebo for four weeks or more. It found that only two conditions had useful amounts of data - postherpetic neuralgia (=chronic pain following shingles) and painful diabetic neuropathy. Gabapentin helped 3 or 4 people in 10 by reducing their pain by at least half, while with placebo only 2 in 10 had this result. I also found a review of the trials for pregabalin, which was quite a lengthy and complex read, but included statements such as that a pooled analysis showed that preagabalin at doses of 150, 300 or 600 mg per day was significantly better than placebo for diabetic peripheral neuropathy, with a median time of 4-5 days needed to see sustained improvement, but not all patients responded (number needed to treat was calculated to be 6 for 300 mg per day and 4 for 600 mg per day). From all that I take the message that it is more effective than placebo, but doesn't work for everyone, not even everyone who has neuropathic pain.

Are there any downsides? Yes. See lists of possible side effects (which for me are very major, but which may be minor or non-existant for others) and withdrawal symptoms, plus remembering to take it 2 or 3 times a day (depending on which one you take) plus any cost.

Are there any other upsides? It may also reduce anxiety, which may be a good thing if you are an anxious person (or not if you're not, depending on your point of view).

Is there anything else I should know? The recommendation with gabapentin and pregabalin is that you should take it regularly, start on a lower dose and gradually work your way up to a higher dose. If you are the sort of person who suffers a lot from side effects, a higher dose might not be suitable for you, so it might be better to stick to the lower dose. I found that the increased pain relief of the higher dose (like with my very first dose) arrived pretty much as soon as I took the first pill, but wore off after my body had habituated to it after a week or two, whereas the side effects endured. Because everyone reacts to meds differently, how it works for me might not be relevant to anyone else, but in case you are interested in how the med is for someone else, this is how it works best for me: I take 100mg 3 x a day most of the time, but take an extra pill on my bad days (e.g. 8 am 100 mg, 3 pm 100 mg, 10pm 200 mg). This has an immediate impact, and fortunately because it's such a small change is easy to come back off. I just go back down to 100 mg 3 x a day when I am ready, as this would in any case be the next step down if I were trying to taper my dose. In fact, the step would probably be from 200 mg 3x a day to 100mg 3x a day. My doctor tells me 100mg 3x a day is a dose I can just stop any time without withdrawal symptoms.

Was it worth the money? Yes, for me (although as I buy a prepayment certificate, that cost is only the gabapentin's share in what my prepayment certificate buys). My life is more unpleasant without gabapentin. I've tried it. (And I'll be trying pregabalin as soon as it comes off patent in July 2017.) However, if you don't get a noticeable benefit from it, or if the side effects make your life worse by more than the benefits make it better, then that changes the answer completely.

Do you use gabapentin or pregabalin for pain? What kind of pain does it help? How quickly did you notice the benefits? What side effects do you get? Have you tried both? If so, which do you find better?

Ice

What is it? Frozen water.

Does it work? It very much depends on the source of your pain, and even then, like with heat, the relief is only temporary. According to this article, the theory is that it works through numbing your nerve endings and constricting your capillaries. All of which is good news if what you have is inflammation or pain where these actions help. Unfortunately, according to this article by the same author, if your problems are due to knots or spasms in your muscles, then icing is likely to make you worse, as it's likely to cause (more) spasms in your muscles. In other word, it'll make your muscles tense up. That's why I've never even tried it, so can't speak from personal experience. My muscles are tense enough already and winter makes me worse, so I've never even wanted to ice. On the other hand, a friend of mine with neuropathy finds cold water and ice very useful for reducing his pain - it works better for him than the meds he takes for it.

Who does it work for? Ice may work for people with inflammation, and is therefore frequently recommended for inflammation, sprains and strains although there is little empirical evidence to back the recommendation up. In fact, people with strains and sprains are specifically told to use ice and avoid heat (which may or may not in the end prove to be correct advice, but is definitely the current NHS recommendation for sprains and strains). However, the articles I quoted above argue that chronic muscle pain probably isn't caused by inflammation (see the next section). For people with muscle-based pain, the articles above recommend ice only for hot, puffy areas of your body where the pain was caused by recent major exertion and not for chronic muscle pain. For neuropathic pain, I found this article recommending trying ice if heat doesn't work, and particularly if you get oedema (fluid build-up) in your hands or feet, as it may help reduce the swelling. A friend of mine finds using ice packs on his neuropathic (foot and leg) pain very helpful, and also putting his feet in cold water, but notes that it is only effective while he is doing it and makes it hard to do much at the same time.
Some people also say ice packs help for the pain of gout.
Also, another theory suggests that the pain you're treating should ideally be near the surface of the skin and/or in your neck or one of your extremities, as most people's bodies are extremely good at controlling their own temperature and therefore the effects of ice aren't likely to penetrate very deeply. On the other, hand, I'm not going to rule out a distraction or placebo effect, or even an effect that science can't yet account for, so if you fancy ice and there's no reason not to use it, then there's little harm in trying. 
On a side note, from personal experience, I can also say that I find itchy skin (and in my case specifically eczema) can calm down to a level where it's not so insistent about being scratched if I press it against something cool like room-temperature metal (e.g. a cold radiator), although I've never tried ice, as the room temperature metal seems a better temperature to me (obviously, if you live somewhere hotter than the UK, and in particular hotter than human body temperature, you'd want something much cooler than room temperature metal, for instance a refrigerated cool pack).
 
Who doesn't it work for? Probably most people with chronic musculoskeletal pain, who are likely to be better off using heat. The guy who wrote the articles above (a qualified massage therapist who has spent a long time focusing on treating people with chronic muscle pain), reckons that inflammation is uncommon in chronic muscle pain, and that by the time pain becomes chronic, even if it started out as inflammation, it's no longer likely to be caused by inflammation once it reaches chronic proportions, even in things like shin splints, where the pain was initially caused by inflammation and your diagnosis remains the same after it becomes chronic. Instead, he thinks you're likely to be suffering from tissue degeneration or muscle knots. There's little evidence either for or against this approach, but taking a cautious approach to using ice for chronic musculoskeletal pain sounds a sensible approach to me. If you have musculoskeletal chronic pain and don't fancy the idea of ice, don't use it. If you do fancy the idea of ice, listen to your body. Apply it as he recommends and if your body says "ooh, no, stop that, this is worse", listen to it and stop that. If it says "ooh, this is nice, I really like this, more please", then listen to that too. The thing about ice is that unless you're stupid with it and give yourself an ice burn (or take an ice bath), the worst you're likely to do is make your body feel like it's been out on a winter's day (obviously you're not going to make your pain any better by doing this repeatedly, but once or twice isn't likely to have a long-term impact).
Also, 7 studies with 328 participants found no significant effect of hot or ice packs for rheumatoid arthritis, so it's probably pointless for that.
Also, don't use ice if you are allergic to it (e.g. you get hives from it), you have Raynaud's Phenomenon (another reason for me and many people with HMS not to use it), decreased circulation or desensitised areas (I think that means areas where you can't feel the cold, so wouldn't know if you'd applied it for too long).

Where can I get it? The freezer.
No seriously, your freezer. You can just use ice from your freezer, for instance wrapped in a tea towel or in a bag, or freeze yourself an ice cup. You can find instructions on how to make an ice cup and also instructions on how to use it here. If you find that useful, instead of using a polystyrene cup each time, you can buy your own commercial ice cup, such as this one or this one. You can also use gel packs or bean bags that you store in your freezer. You can find instructions on how to use them here. It's also possible to have an ice bath (i.e. run a cold bath and add ice), although that mainly seems aimed at people trying to avoid pain after exercise, and please also bear in mind that the same article describes ice baths as "torture", says they're not well studied and warns they can be dangerous because the shock of immersion can affect the heart, blood vessels and respiratory system and raise blood pressure and the heart rate, and the long-term effects are unclear. Other similar, but less tortuous options that may help include putting the area with pain in cold water or having a cold bath of shower (just cold, not filled with ice). No one seems to have studied this, so you'll have to decide for yourself if this helps you or not.


How much does it cost? If you have a freezer anyway, the only cost is for the container for freezing ice. Your freezer probably already came with an ice cube tray. Alternatively, these ice cube bags for £1 make a handy bag to stop the water dripping everywhere. Also, you can keep refreezing the same bag if you want (although you probably shouldn't consume the ice you've done that to). You can get 10 foam cups to make ice cups from for £1. The pro-tec ice-up is £20.99. I found the Cryocup available at £77.94 for 10! It doesn't seem widely available in the UK.

Is there a cheap or free version? There's no getting round the need for a freezer (unless you live somewhere that has freezing temperatures outdoors), but if you have that, then everything else is already pretty cheap (or free if your freezer came with ice cube trays).

Is there any evidence for it?  More information seems to have been gathered on ice for acute pain or post-exercise pain than for chronic pain. However, one low quality trial found that light ice massage and TENS were similarly effective in reducing chronic low back pain. A further two low quality non-randomised trials reported conflicting results on ice versus heat. One found no significant difference between hot packs and ice massage for back pain of mixed duration and the other found ice massage superior to hot packs for chronic low back pain (unfortunately, a non-randomised trial is only a small step up from anecdotal evidence, so this isn't ideal). I also found this small study on ice therapy for peripheral neuropathy on 33 participants. Unfortunately the way they wrote up the result left me unclear as to whether they thought it was successful ("the results of the study were negative, there was a decrease in pain intensity over time with both the ice massage and towel massage, suggesting that the intervention has some clinical benefit"). Anyhow, basically, the studies that have been done have been small and/or non-randomised and have had mixed results, so not great evidence, and the evidence that my friend says it works for him is strictly anecdotal evidence, so about the lowest quality evidence you can get, but doesn't rule out the possibility it might also work for you if you have the right sort of pain.

Are there any downsides? Yes. Because of its tendency to make muscles tense up, ice can make your pain worse if your pain is created or exacerbated by muscle tension, muscle spasms or muscle knots. Also, some people find applying ice unpleasant. If either of these applies to you, don't do it. There's no proven long-term benefit. The benefit, if any, is likely to be short-term and temporary (OK, given how little research there is on the subject, this could later be proven untrue, but for now the safer assumption is that it's only providing short term benefits, and if you're not getting those, then there's no point and you may even be making yourself worse). Also, an ice bath could be dangerous for people with heart, respiratory or high blood pressure problems (and is apparently also as deeply an unpleasant an experience as it sounds). Finally, even applying ice locally could give you frostbite or an ice burn if you do it for too long. However, according to this article, this sort of tissue damage doesn't occur until at least three minutes after you've gone numb, so providing you stop at roughly the time when your skin goes numb (and providing you have normal ability to sense heat and cold and numbness), you shouldn't experience a problem.

Are there any other upsides? This is drug-free, cheap method of reducing pain. It may also be good at reducing inflammation, current medical advice says it is, but empirical evidence has not yet been gathered.

Was it worth the money/effort? For me, no. I've never had the right type of pain or the will to try it, and also I have Raynaud's Phenomenon, so it's a bad idea for me. My friend with neuropathy says yes, it's totally worth it and one of the best forms of relief he has.

Do you have any experiences of using ice to treat chronic pain? What did it work (or not work) for? What method did you use?