Here are some of the general things I've found useful - don't hesitate to write to me anyway, but here's what I say by default.
Firstly - keep in touch with your doctor. GPs will not know as much as the specialists, but they can write you referral letters to those specialists. And they can prescribe you appropriate pain killers - over-the-counter ibuprofen ("Neurofen") is only half the strength of that which a GP can prescribe and things like co-drydramol or diclofenac ("Arthrotec") are more powerful still. And if you are away from work for an extended period (as I am writing this) then you'll probably need a sick note! When you see a specialist keep a list ready of what you want to say and try and write down as much of the answers as you can.
Secondly - do not have too much manipulation. The "click" you get when an osteopath releases something is doing you damage: not a problem for someone who only needs a little bit of osteopathy. My routine amounts of osteopathy are only possible because its very gentle "cranial" osteopathy - change is brought about by almost impreceptible maneouvres. The damage thing probably applies to chiropractors also, but chances are they're less useful than osteopaths (more problems are caused by the soft tissue than by the skeletal structure - don't let this dissuade you if you have found a chiro suits you). Multiple practioners can be a big help - physiotherapy plus hydrotherapy plus osteopathy for me is certainly greater than the sum of the parts. I've still mixed feelings about Intramuscular Stimulation (acupuncture) (it hurt a lot) but you might try it for a frozen shoulder or lumbar spasm.
Thirdly - keep as active as you can when ill. The old advice in the NHS for back pain was "bed rest", which was possibly the worst thing that could have been done. Of course, you can only be active within your own limits: but don't stay in bed when its really bad, do try and do things for yourself rather than being waited on hand and foot. Even crawling around the house is better than being immobile in bed! I tend to break an activity up into manageable parts - first get out of bed (fall out...) then rest, then crawl to the top of the stairs and rest, then go down stairs on my bottom, then rest, then crawl to the kitchen (and if you can do better than crawling, do so!). Its like a military operation (with civilian casualties...). Be specially nice to those who help you. Let the house-work go hang.
Fourthly - keep active in your life when you're well. For me, two (now three!) hydrotherapy sessions a week are really helpful. You might like to try gentle walking, Pilates, Alexander technique or other gentle exercises (short of wrapping your legs around the back of your neck in extreme yoga) [Pilates does work for me, but it doesn't work for other people I know]. I've become known as a fidget - if you must be sat for some reason, keep changing position. If you are at work, keep taking a "walk around the room" break. Those exercises they show on aircraft nowadays - do the lot of them! Twice! Give up things which are bad for you - I had to stop posting RSPB envelopes in the neighbourhood since it meant too much bending.
Fifthly - Have a close look at where you sit (car, home and work) and your bed. If you work with computers, then make sure that you follow the guidelines for positioning everything: the top of the monitor should be level with your eyes as you sit up straight and look directly ahead; there should be enough space to rest your wrists on the desk in front of the keyboard and you should be able to sit upright in order to get your arms into a suitable place. You may find gel pads help or changing a mouse for a trackball (which can be used from many more positions). A smaller (less wide) keyboard allows you to put the mouse/trackball next to it which can also help: I have a Cherry G84-4100 LCA. I'm currently trying a Quill mouse, but also like Logitech Trackman Wheel. Use software like Break Reminder to make you get away from the machine. Get your very own bed if you are restless at night - and don't be afraid to go for a wander in the middle of the night if you've seized up a bit. Consider an automatic car. Treat with the gravest suspicion chairs which have concave backs! Buy things that you will be carrying on the basis of their weight and make sure other people pick up the heavier stuff for you. (It turns out this applies to pushing things as well as lifting them :-( ) Carry things on your waist rather than shoulders (belt pack for walking, for example). I have a Lowepro Stealth Reporter 400AW with a S&F belt to carry a laptop computer in (and a Lowepro Sideline Shooter when I don't have to carry much - camera (in Lowepro TLZ Mini case), lenses).
Sixthly - get a TENS machine and keep a supply of ibuprofen around. Don't try and kep a stiff upper lip and not take the pills! Keep your TENS machine use within the advised limits but don't worry too much if you have to go over the top now and then. A two channel TENS machine (four pads) is much more use than a one channel one (two pads). You DON'T want a TENS machine with a timer (well, not one you can't turn off!). If you use the TENS machine a lot, rechargeable batteries are a good idea! A good book (way better than the brochure that came with my machine) is King's Guide to TENS (ISBN 0-9535623-0-1). If you have inflammation, treat it with cold (ice pack wrapped in towel or bottle of cold water) whereas if you have muscle spasms treat it with warmth (warm bottle of water - a "platypus" is quite good). Dealing with a combination of both is an interesting exercise... Alternating cold and warm treatments (10 minutes each, say) can help a lot too. Sarah Keys' Back Sufferer's Bible (ISBN 0-09-181494-4) is a good overview of self treatment, though she doesn't deal much with hypermobility problems. There's little point in Calcium supplements unless you have a positive diagnosis of osteoporosis. Glucosamine, Chondroitin and Methylsulphonylmethane supplements may possibly help if you have a cartilage problem but are worth consulting your GP about first: my pain anaesthetist also recommended Green Lipped Mussel extract (be patient: they all take some time before effects can be observed). Devil's Claw (recommended by my osteopath) can be taken daily as a mild anti-inflammatory.
This bit only applies to UK readers - I'm happy to create equivalent recommendations for other countries: Bio-Freeze (much more effective than a cold pack) is available from Physio-Med by mail order (01457 8604444) [11 Glossop Brook Business Park, Surrey Street, Glossop, Derbyshire, SK13 7AJ] but you will need someone to massage it in (can be fun!). A cheap, good two channel TENS machine is the TPN200 Plus (small enough to hide under the pillow at night...) also from Physio-Med and PALS ValuTrode 9x4 cm are really good for extended use (and they're much cheaper in packs of 4 sets of 4!) - the TPN200 Plus is about £35 and better than anything Boots has... (and it comes with King's Guide!) If you live in the Cambridge area, Physiomobile is at http://www.physiomobile.co.uk/. Aquamobility is through the Cambridgeshire Community Learning. In the UK, the Access to Work Business Centre by Job Centre Plus will fund special equipment for work - mice, keyboard, chair etc.
I'd welcome any suggestions that you find that work.
Words (c) Sophie Wilson, 2002-2007. Back to my Home Page.