Hi Bratette

That's excellent advice from Willow. Might be an idea to do some research on the pump and see if seizures can be a side-effect, if they are known then best to get the wire positions checked to make sure they are in the right place for you. I know they have to be positioned very carefully because there can be a number of issues if they are slightly off...

You mention the 5 months since the pump - did you get it straight away when diagnosed, or have you had the CRPS for much longer than this? Sounds like you are having a really tough time of it, and that's a lot of pain to be still in while on a constant SCS I agree with Willow on changing docs - especially if this one doesn't seem that good - if you hate him, that's never a good sign of how good he is. I know it's so hard to find a good doc, but there are some out there, and with a condition as serious and debilitating as CRPS, it is really important to get the RIGHT treatment. And sadly, all docs seem to treat this differently

Are you on any meds on top of the pump? Also (so sorry for all the questions, I'm just worried for you) are you convinced you have CRPS/RSD? What are your symptoms? I only ask because although it's rare enough to actually get diagnosed, docs do make mistakes, and I'm just wondering whether this guy might be flying solo and maybe hasn't investigated thoroughly. Obviously I could be completely wrong about this having got hold of the wrong end of the proverbial stick lol, in which case masses of apologies!!!

I really hope you're having a better day today. 5 kids is a LOT of work, I'm not surprised you are struggling with the pain. There are a few non-med things that really help me - I use warm Epsom salt baths, deep breathing exercises (the deep breath-in through your nose silently saying 'calm', then a long, slow breath out through your nose counting slowly to 5), and meditation (you can download tracks for free from iTunes, or look for the Mindfulness Body Scan meditation on YouTube or the web.

I appreciate that this might not be possible all in one go with 5 children, but I have roughly an hour each morning that I use for some me-time. I gently stretch out my muscles, then I do about 15 minutes of very gentle exercises called Qi-Gong, and on bad days just some ones called "exercises for those confined to bed" from a diabetes site (google the quotes bit, they take your legs mostly out of the equation, and concentrate on core strength - I used them for ages when my leg was really bad, they are great). Then I use some nice-smelling oil (all natural to prevent irritation) and massage my legs and arms gently. Then I do a meditation.

I know it sounds happy-clappy and I was very skeptical myself, but it really truly helps a lot. It makes me feel like I have some control over how I feel, and keeps me in touch with my body. It also makes me feel better about things, and reduces my pain levels. If I miss it out, I know all about it. My skin is in better shape now, and my overal mobility is improved (I was in crutches and a wheelchair before June this year). If an hour is just out of the question then try splitting it into chunks where you can and just grabbing ten minutes here and there. Stress is such a big flare inducer for CRPS, and if you can feel like you have more of a handle on things then it really does help.

Sorry to go on, I'm a wordy soul at times!

Take care of yourself, and I hope your pain levels are lower today. What ages are your kids? I admire you so much, coping with this along with a big family and all the work that goes with it. I hope you have a bit of help sometimes from friends or family.

Hang in there,

Bram.