[terralyn]

What's your pain level? Does anyone else have a hard time doing this? On a scale of one to ten... good days are a four or five. I started flaring up last Saturday and it hasn't gone below a seven since no matter what I do.

So tell me.. what do you do when your pain is worse? What's the highest you've rated your plain? What's the lowest it gets for you?

[catra121]

On an average day lately the pain levels have been between 5-6 for me...at least for most of the day. The more active I am, the higher the pain levels get by the end of the day and it's not unusual for me to get up to an 8 or so by the end of the day. I've definitely been at a 10 and spent much of last year at a 9-10 every day all day...it was NOT a good year for me. It used to be that the pain never got below a 5 for me but since I have started tDCS treatments the pain has gotten as low as a 3. Doesn't usually stay that low long since I feel so energized by the lower pain levels that I do a lot of activity and the pain level rises with the activity...but it's still SO much better than last year that I am just grateful for what I have.

When the pain is worse I tend to pull out my little bad of tricks to calm down the heightened pain levels and follow these steps.

1. Take a hot bath with epsom salts and just soak for a little while.

2. Do an ultrasound treatment on the area bothing me. I ordered at at home, portable ultrasound heat therapy machine on amazon.com for $40 or so and it has been great.

3. Depending on where the pain is and whether it is near bed time or not I either put the TENS unit on surrounding the pain area (doesn't work if it's a larger area or close to bedtime) or I put a lidoderm patch on the area that is worst.

4. Put a heating pad on the area that is hurting worse (I prefer the stick on patch kind because they are light weight but if it's my back and I will be sitting then I might use the electric heating pad...especially if it's a large area).

5. Relax...which is hard to do when you are in pain but I do my best. The worst thing for me is that I get bored...I have never been one to sit still for long periods of time and even though I don't have any real choice in moments of increased pain it still drives me batty. So I try to make sure I have something with me that will help me relax. Might be my stitching, might be a magazine, might be an audiobook, might be the tv (though after a year spent sitting in one spot ALL the time I am now mostly bored with tv)...find what works for you. It helps to have something that can at least partially take my mind off the pain.

6. Physical therapy. I don't do anything crazy...but if my ankle is flaring I will do the alphabet with it while I sit or or other easy seated exercises that don't require weight bearing. If it's my hands I might just flex my hand while I sit. Immobilizing the areas that are hurting is one of the worst things I can do so I focus on making myself move them at regular intervals.

7. Put on comfy, loose clothes. When it's a bad flare...I can't stand anything touching my skin on my RSD areas. Just helps to not have anything else contributing to the extra pain.

8. Space heater. I sit near a space heater to make sure I am nice and toasty warm...or at least as warm as possible.

9. Headphones. If my flare is being ignited by noise or vibrations I have found that listening to my ipod (either a book or music) with the headphones in as opposed to the speaker helps. Someone on here mentioned that to me last year and I am so grateful for the trick.

I don't take any meds anymore except the lidoderm patches and clonidine patches. Most of what I tried never helped and I didn't want to take anything stronger since I am only 28 and am concerned about the long term affects of these medications...could have something to do with the fact that what I was taking caused seratonin syndrome and a host of other problems last year while I was also experiencing spread...not a good combination. But I know a lot of people also have meds that they only take when the pain gets really bad to help them calm down their flares...so that might be something worth discussing with the doctor.

Everyone is different though so what works for me doesn't work for everyone. But after a lot of trial and error these are the things that work for me. Ever since I started the tDCS treatments my flares respond VERY well to all of these things and rarely last more than a day if I follow this process. Before that these things all helped but flares typically lasted days...sometimes even a week or more.

I hope at least some of those things can help you.

[painman2009]

I live in 7-8 but go up to ten at least once a day. and when i get those papers from the drs i write pain level??? yes ..and you are supposed to diagram your pain.. hey where are the crayons really. what do they expect ;to under stand our pain with marks on a piece of paper. hello!! why only give us up to ten i go to 100 on really bad days. .. all that to say, yeah I have difficulty with it as well. when i have pain in one part of my body and its at ten but the others parts are at 7 its hard to say. but when they are all at ten . break out the spatula cause some one needs to scrape me off the floor.(thankfully that is not every day. but still if totally ubarable pain in one part of your body feels one way.(ten level) then when all parts act up at once .. don't you add those together? (There is food for thought)

[mommystime2]

i hate those pain scales too....really look at me...try to touch my arm and i might explode!

[catra121]

I wanted to add too that I don't particularly like the pain scales either. Mostly because what I consider a 3 now would have knocked me on my butt pre-RSD...so I think it changes over time based on what your sense of "norm" it. I told the doctor last year that my definition of a 10 kept changing because every day I was experiencing new, worse pain so my concept of a 10 kept having to adjust to compensate.

[terralyn]

Originally Posted by catra121

I wanted to add too that I don't particularly like the pain scales either. Mostly because what I consider a 3 now would have knocked me on my butt pre-RSD...so I think it changes over time based on what your sense of "norm" it. I told the doctor last year that my definition of a 10 kept changing because every day I was experiencing new, worse pain so my concept of a 10 kept having to adjust to compensate.

EXACTLY! I feel the same way!

[terralyn]

Originally Posted by painman2009

I live in 7-8 but go up to ten at least once a day. and when i get those papers from the drs i write pain level??? yes ..and you are supposed to diagram your pain.. hey where are the crayons really. what do they expect ;to under stand our pain with marks on a piece of paper. hello!! why only give us up to ten i go to 100 on really bad days. .. all that to say, yeah I have difficulty with it as well. when i have pain in one part of my body and its at ten but the others parts are at 7 its hard to say. but when they are all at ten . break out the spatula cause some one needs to scrape me off the floor.(thankfully that is not every day. but still if totally ubarable pain in one part of your body feels one way.(ten level) then when all parts act up at once .. don't you add those together? (There is food for thought)

Oh my!! You made me giggle! But at the same time I completely agree! The pain scale makes me crazy.. especially for those of you that have pain in diff areas of your body!

[terralyn]

Tens drove me crazy and increased pain a lot for me~ wondering now if its because the pt had it set too high or if everyone is different???

[catra121]

Originally Posted by terralyn

Tens drove me crazy and increased pain a lot for me~ wondering now if its because the pt had it set too high or if everyone is different???

Everyone is different...but I also think the settings matter and where you place the electrodes is important too. I'm no expert and can only speak about my own experiences though. I do know some people don't respond well to TENS and then there was one person I spoke to who had a bad reaction to TENS but then changed the settings and it have her relief. I know for me too I also start at the lowest setting I can on the TENS and then bump it up throughout the treatment gradually as I tolerate the level I'm at. If you already had a bad reaction though I would make sure any future trials with one (if there are any) are done under the supervision of a physical therapist or doctor. Doesn't work for everyone but for me it was/is a life saver.

[terralyn]

I was at pt when it happened each time. For hours after the nerve pain was worse as was my sensitivity. Glad you get relief though.. just shows how different we all are when it comes to what works.