Originally Posted by chaos

Some questions I've been thinking about, and I'm sure I'll add more:

1. How many of you work? Or, how long did you work, go on SSDI, etc? Right now I'm toughing it out, suffering, not letting work know how addled my brain is but I can't keep that up for long. My job is good physically, it's the mental stuff that's the worst.

I had to leave my job because it was physically not suitable (initially problem was my knee, spread to feet and leg...fab...not lol ) but I considered my options and started working for myself as a tutor. It's going well, and I like being able to set my own hours and keep control myself. Income has dropped, but it could have been much worse!


2. How do you keep warm in Winter? I'm in CA so it's not horrible, but I lived in my Uggs last winter, even sometimes to work, currently I have my space heater on my feet, which is often. My lower legs are often blotchy purple.

Yep, I get this problem too! For me it's about getting warm early on in the day, and keeping warm throughout. If my feet/leg get cold early, they tend to burn up more later. I have triple thick socks, warm fleeced trousers in the house, fleeced boots for outside, a blanket on the back of my sofa for mild warming, and a small electric blanket for more intense warmth. I've found that if I can keep the skin temp fairly even, my symptoms are less extreme.

3. Did the pain progress over time, or did it plateau? Did the pain just have bad days? Breakthrough pain? I get everybody is different, so maybe those who have it bad in the feet are better to answer.

The pain has changed over time, less intense generally, with spikes or flares of bad pain. I can do a lot more now in terms of walking etc than I could in the first year of this. I would say that it DOES get better. Also, your body gets more used to the pain and you learn to cope better. It all helps.

4. Were there any improvements you had to make in your home? We're hoping to buy a house soonish and I feel like I need a one story, big kitchen that I can put a chair in to sit on while cooking, area where I can get sunshine if it's cold out, and a fireplace. I've seen a lot of people mentioning they got a jet tub for their bathroom.

We're pushed for cash and can't move (boo) but yes I did need some 'improvements' to start with when the pain was really bad and I could barely walk. I have a toilet surround to help me push up without hurting my knees (ugly but invaluable!), a big hand rail by the bath (ditto), a bath stool and bath seat were great in the early days, and a bed cage thing that lifts the covers off my feet. None of them are sexy like a nice hot tub would be!!!!!

5. Do you use any mobility devices? Last weekend I overdid it and had to use my husband's arm. I would have used a cane if I had one. Most of the time I just get up, say ow ow ow and hobble along.

You can do a lot of harm long-term to your joints if you walk badly with a heavy limp. Use what you have to to make it less painful. I have a single cane for ropey but stubborn days, arm crutches for well ropey days, and a self-propelled wheelchair for awful patches where it's been bad for weeks and I MUST get out of the house or go mad. Don't put off getting any aids you need - its so important for your sanity and sense of self that you get out and live life. If that means using a wheelchair for a while, then go for it and who cares what people think?!


6. Is there anything natural I can use/take that I'm not already doing? (magnesium, D, B12, as well as smoking MMJ, I'd die without that, and I need to add C)

I love Manuka honey for dry mouth sores, and it's great on your skin too (I know it sounds mad, but it is amazing stuff). Epsom salts for soaks or a poultice. And a glass of wine of an evening does wonders for me and my ability to relax just a little. I always have it with a meal so as to avoid the slippery slope to madness.....lol. Now this is going to sound certifiable but I have the natural organic version of a pet calmer plug-in (don't get Feliway) - its called 'Pet Remedy' and I got it to calm my cats down and relieve stress/anxiety, but to be honest it is fab. I feel calmer myself!!!! On the back it says it can give humans the same feeling, and I thought it was a joke....but honestly I love it. It contains valerian, vetivert and essential oils and smells a little like an earthy joss-stick.


7. For somebody sensitive to drugs, what are you taking that works? I'm trying to explore all options that are non-narcotic/opiates. Tramadol was horrible, for example of my sensitivity. Doc suggested Prialt.
Ugh. Drugs. I'm not a fan simply because I've had some bad experiences with some (tramadol, amitriptyline, anti-inflammatories, Gabapentin) and others have just not done a thing (tramadol lol, lidocaine patches, codeine etc.)

8. Is there anything you did for your tremor if you had one? I have one in my right hand that started in July. Doc gave me propranolol, but as my BP is super good, it just made me beyond tired to a point I felt unsafe on it and stopped. The tremor is only bad when I'm worn out and super sore, otherwise it's not bad, but I don't know what it'll do down the road.

I do have minor tremors in my leg and sometimes in my hands. I massage them with a natural oil and that seems to help a bit. They are tricky things to deal with...


9. Is there a site that has info on this for kids? I tried to talk to my 11 year old about this last night and she brushed it off, but she also has mild autism. Throughout the last year or so she's told me she thinks I'm faking it. The tremor was the only thing that really got my husband to realize something was really wrong.

I feel for you there. I've got two kids, one 16 one 10, it's hard to try to explain it without freaking them out or seeming really needy. All I can suggest is that you a) never ever show them the CRPS videos with scary pictures - always check that it's suitable first! and b) write out a few basic things about CRPS on A4 and tell them through it, then stick it on a quiet bit of wall in the house where they will see it now and then - it just reminds them gently...

10. Do you hire help around the house? Or do you force yourself to do it to keep active? I would love to get somebody to clean the shower and mop the floors, help dust. I can do the laundry and picking up now (on weekends only usually, as it takes so long to do), but shopping can be hard and I don't trust DH to get the correct items for me. Heck, the only time I ordered from Safeway to be delivered I didn't get the correct items. I'm a little OCD when it comes to kitchen stuff. And with two vegetarians and me with an onion allergy, it's impossible to buy most premade items, I get a few things from TJs.

I can't afford help so we just manage. If I could afford it tho I'd have a cleaner like a shot!! We have rearranged a LOT about our lives - my darling husband now does more of the physical stuff and driving about, shopping etc., and I do more of the cerebral stuff lol, like organising things, finances, etc, homework and so on. Just keep talking to the family so they understand why sometimes you just can't do the stuff you used to....

11. How well are you all sleeping? I had a sleep study done and it showed my pain is keeping me too alert so I'm not sleeping well. I have to sleep in until noon most Saturdays to catch up. A few days I've come home from work, gone to bed and slept all night. I'd guess the pain pump would help this. I don't have issues falling asleep, but it's not real sleep. I know I need good sleep to heal.

I found I almost had to relearn how to get to sleep. I tried various things like calm music etc, but repetition worked best for me, I recited the voice over from a remembered childhood programme (details on luna's thread lol) and that did the trick. I still get some bad nights, but far far less. Keep at it and you will hopefully find something that works for you....