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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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10-31-2018, 09:24 AM | #1 | ||
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I have done a search and saw that many mention flares but no one really talks about what stops theirs (at least that I read). Since I'm having my first I'm curious as to what has worked for you. So far nothing is really working that well hence my question. Thanks!!
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11-01-2018, 06:29 PM | #2 | |||
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I have a very long list of things that I try...kind of like my flare up emergency kit.
#1 thing is usually take a warm/hot bath with epsom salts. This is one of the few things that can help me when the pain is wide spread...to just soak in the warm water. But...I have to get out before it gets cold...or badness ensues. When it's cold in the house/outside...I make sure to put a space heater in the bathroom before my bath to warm the room up so it's not cold when I get out because again...badness ensues if I get cold. #2...rest and warmth. Space heaters are great to warm an area without anything actually touching me. I also use heat patches (generic thermacare ones usually) or reusable heat pads (downside to these is they don't stay warm very long)...or heated blanket (I usually sit on top of it because in a bad flare up I usually want nothing on top of me). #3...Lidocaine Patches are my friend for flare ups...so I use them. One caveat...they send me through the roof when I first put them on because they are cold...but once they are on they really do help (a little...everything helps a little and then that adds up to getting me out of a flare up). #4...I have a flare up playlist on my ipod. Sounds silly...but it really can help me just calm down and stress is often a cause of the flare ups. I put in earbuds because those help vs just listening on a speaker. My flare up playlist is instrumental songs...many from movies/tvshows...but I just close my eyes while resting in my warm spot and it does help. Those are my usual tricks. Back when my pain was in one place, a TENS unit and ultrasound heat therapy were two very useful tools for me as well. The more wide spread pain made those not as effective for me but both can be purchased on Amazon. The big trick is to find what works for YOU and realizing there's no miracle fix. A lot of time it's a lot of little things that just help a little and help break that cycle to get you back to baseline. I also find distractions are good. I cross stitch, color, do puzzles, etc. TV is not very helpful for me...I rarely LOSE myself in the tv like I can in these other things...but find what works for you without making your pain worse. I now have this condition in my hands so it does limit my ability to do these things I love...but I will do them in short stretches and take breaks from them often and they still help distract me for a bit. |
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"Thanks for this!" says: | annabanana123 (11-02-2018), BioBased (11-03-2018) |
11-02-2018, 06:19 AM | #3 | ||
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Junior Member
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Thanks Catra! Mine is getting more widespread - officially in both my right arm and leg but I have started feeling some burning in my left arm with this flare up as well. I am trying to rest, meditate, take meds, walk, distractions, lidocaine patches, etc. but it's all kind of taking the pain from "burning alive" to "still enough to make me barely functional." I attempted to call my pain management doctor but didn't get a call back, ugh. I don't know what their deal is. That's supposed to be why we have them, right??
Unfortunately I am still working full time and have a small-ish child so resting is tough. I am doing the best I can with that but it's nearly impossible to rest for more than a few hours (unless sleeping at night, but even then...that's sort of a lost cause at the moment). Work is a good distraction I guess, maybe. |
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"Thanks for this!" says: | BioBased (11-03-2018) |
11-03-2018, 02:00 AM | #4 | |||
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Senior Member
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I hear ya...my daughter is turning 4 this month and I just returned to working full time in August...lucky if I get 2 hours of sleep a night (which is why I'm typing this at 1:50am). It takes so much energy just to try to do the things I need to help my pain and many times, like you, the difference seems so small that I ask myself is it really worth all of this? But...it is...and over time you learn to make those small adjustments to the way you do things, to see the earliest warning signs of a flare so you can start doing things for relief proactively instead of after the flare up is already under way, etc.
It's unacceptable that your pain management doctors not get back to you. I had no luck with pain meds and such...though the lidocaine patches help a little...but the truth is that for years and years and years the best relief I got was from the stuff I taught myself. I have a good pain management doctor now, he got me the DRG spinal cord stimulator that has been life changing for me (seriously...went in for surgery in a wheelchair and walked out of the hospital that day...huge difference in my leg but unfortunately only in my leg from the knee down so still full force in both arms, hands, leg from the knee up, etc). But even he couldn't find anything else that could help me...it was up to me for the day to day stuff and I educated myself with lots of research, lots of trial and error, etc. I've been struggling a lot since my return to work because it has thrown off everything for me...and I have yet to find a good balance between the work, caring for my daughter, taking care of the house, etc...and caring for myself. It's a struggle...but it is worth it. |
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"Thanks for this!" says: | BioBased (11-03-2018) |
11-03-2018, 11:06 PM | #5 | ||
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Junior Member
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I have found that infrared saunas help as well as paraffin wax dips. The warmth of the wax helped a flare (I also have EDS) and the added oils make a huge difference. Regular infrared saunas not only help reduce the inflammation they help for restoratice sleep.
Hope you get some good suggestions J |
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"Thanks for this!" says: | BioBased (11-05-2018) |
11-05-2018, 07:59 AM | #6 | ||
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11-05-2018, 11:19 PM | #7 | |||
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Community Support Team
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If Epsom salts in a bath help, there are Epsom salts /magnesium gels /lotions that might be helpful, when you can’t stop and soak in a tub..
This is a Gel that I use for muscle strain & pain..there are other brands that can be sprayed on if touch is an issue.. PROCURE Epsom Salt Rub Gel with Aloe Vera - Google Search paraffin wax for pain - Google Search
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"Thanks for this!" says: | annabanana123 (11-06-2018), birchlake (11-10-2018) |
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