NeuroTalk Support Groups

Hi Matthew :) and welcome to the site.

I'm so sorry you've gone through such a lot. CRPS is not a nice thing to live with, but we are all testament to the fact that you can and will have a life despite everything it throws at you. It is possible to gain control over the symptoms and their effects. Sometimes things seem pretty bleak for a while, but there's always something that comes along and just gives us some hope. New meds, new treatments, just a new doctor who understands the darn thing!

There are a few things you can do straight away to help yourself, and I apologise in advance if these are things you know already!!

- NEVER EVER EVER USE ICE ON YOUR SKIN AGAIN. Ice is very bad news with CRPS. If a nurse or physio says you need to use it, they are wrong. Just be polite but firm, and ignore them lol. For swelling, use elevation and NSAIDs, and massage can also be very helpful longer term.

- Take vitamin C every day, about 500mg, with a meal. Research has shown that regular vitamin C helps to prevent the chance of CRPS spreading.

- Use that limb. However painful it is (and we really do know how painful it can be). CRPS thrives on lack of use. The more you use the limb, the easier the pain gets. It can still hurt like the blazes, but not as badly, and you will find that symptoms like the swelling and hot redness become less too. Plus the more you use it, the more you can do, and the best thing for the huge psychological effect of dealing with this beast is doing stuff. Anything that takes your mind off it. Just work up gradually with little things until your body accepts them without too much pain - the idea is to calm those extreme pain signals down, not to make them go crazy by doing too much at once. It's something physios unfamiliar with CRPS can get wrong. If your body hurts too much, back off a bit, but keep going and pushing things that little bit each time. It can take months or years though, be patient, you'll get there. (Thanks AZDi, I forgot to clarify that!)

- Be wary of strong pain drugs unless they really are your only option. The pain can be horrible, but many of us manage on other meds with few actual pain meds. CRPS pain is not something easily controlled with traditional meds, and as you said, the side effects are horrific sometimes (my own recent experience of them with a back problem confirmed all that. Yikes).

- talk to your family. Sounds stupid I know, but we all feel guilty about the effect this kind of illness has on them, and we tend to keep quiet when sometimes we really need to let people in. Family tend to more understanding and empathic and feel better themselvesif you communicate your feelings about all this. Not all the time lol, but let them know, particularly if you have kids. I have a husband and 2 daughters, and in the early days of CRPS when I was just hurting and guilty and depressed, I would just exist, hate asking for things and be generally a right mope. It's hard, but you do learn to ask without guilt, to explain how you're feeling, and to ask for support when you need it most. Without (mostly) feeling like you shouldn't have to :rolleyes:. The hard fact is that unless you have had a long-term painful condition, you can't possibly know what it's like to deal with this. And it's hard to sympathise for long with something you don't understand. So find some good sites like the NHS one, Wikipedia is good, RSD hope, CRPS UK, etc and give them a few facts and some info. Knowledge is power - for all of you.

- Educate yourself. As you said so correctly, most docs don't know this thing. Add to that nurses, physios and dentists. Arm yourself with some sheets of info from good sites (not too many sheets tho lol) for when you see them. Make sure they know the facts about CRPS before they treat you. If they refuse to read even that, then find another. It's harsh, but it will save you from poor treatment that might make things worse. Knowing about CRPS yourself is your best defence, and best way forwards. Don't look at photos though - they are sometimes of very extreme cases and will just scare you and anyone else, particularly children. Don't get obsessed by it, but learn the basics and keep up to date on any new thinking that's published.

- You said your doc didn't know about it - can you ask him if he knows anyone with experience of it? If not, then try starting a thread here asking for a recommendation for a doc in a specific area. Most folk here are very helpful, and they will try their best. It's important your primary care doc is at least willing to learn a little about it, so just ask them. Some are good, some aren't. You might have to change, but it'll hopefully be worth it.

- there are some threads on the site about wounds that won't heal, so do a search on the site (top of the main page) for wounds and you should get something useful. I have used Manuka honey successfully for the odd smaller thing that got stubborn, and mouth ulcers etc, and I know from reading that it is used in some hospitals for wounds that are unresponsive to regular treatment. Do your own reading on it though, and decide for yourself. Manuka is natural though, and has no side effects - but if you do decide to try it, read up first on the best technique and maybe ask your docs view on it.

- There are some meds that work well on the long-term nerve pain of CRPS, like amitriptyline, gabapentin and lyrica. I've tried all three and am now on lyrica long term due to side effects of the others, but we are all different and all respond differently to meds, so see what your doc thinks. They are definitely worth a try though, they can make a big difference to the pain. Your regular doc can prescribe them.

- see a psychologist if one is offered to you, but walk out if they say anything that makes you feel like its your own fault, like you are over-reacting to things, like you need to just 'get over it' etc. Rare to come across, but unfortunately a few have. No one likes the idea of talking to a stranger about feelings, but honestly it can really help you deal with things. Especially useful if your partner can see someone with you and get your perspective a bit through them.

- pain management courses. Hmm. I was a big skeptic, but am now convinced having done one. Pacing is a patronising word, but a very useful skill, and it helps you even out your days. Not so much do loads on a good day, then pay for three days, but more do enough every day. It's a hard but worthwhile skill to learn, and will help you get a lot of your life back.

- be good to yourself. You still deserve nice things, and good experiences. Guilt is a terrible thing, and you do have to lay it down as far as possible away from you. I still feel guilty sometimes, but let's face it, no one would choose this, and it's not your fault. Have some time every day to be kind to yourself. I do a little meditation most days as well (another thing I was skeptical about!) and it helps me feel a little more in control of things. Even if I'm not! Massage with some nice oil is good for your skin, muscles and mind too - just always choose very natural products now, in case your skin objects. Chocolate and a glass of red wine sometimes are good too :)

Life is still out there for you. Some things might have to change or stop, but other things can take their place. Work is a big deal for us all, but there are options, and things can work out. Never give up hope.

I'm sorry if this has been a preachy lecture lol, I get a bit wordy and passionate about this stuff!! I got CRPS just under three years ago after a simple knee op, and now have it in my entire left side and right foot. My first year was horrible and a dark time in general, but things have improved in many ways. I have more movement and motion now, less general pain, and a sunnier disposition (most days :winky:). I'm older and wiser about CRPS, and more realistic about what to expect of medics and people in general. I get less disappointed than I did early on when I hoped everyone could fix me!

Take good care of yourself, and find ways to smile whenever you can. Your family will learn along with you, and things will get easier to deal with, a little all the time. Honest.

All the best, and keep posting.

Bram.