If you try this, please post a reply. I know that typically there’s only about 1 reply post for every 30 or so views, but honestly I really think this is very important and I hope that with frequent replies we can keep it on the front page near the top of the Copaxone message board.
I’m not one to accept what I’m told, at least not without a lot of (seemingly annoying) follow-up questions. If I don’t get answers I go looking for folks who know (this is why I’m here with you) and or credible references. And then there’s good ole fashioned, figure it out yourself. One of my lifelong mottos is:
"If you continue to do what you’re already doing, you’ll continue to get what you’ve already got"
Seems simple, but so very hard to apply to real life (I promise to get to the Copaxone part soon). While I’m not out to lecture folks, I honestly can’t explain things quickly. My boss hates this characteristic and I hate the part where folks interrupt to ask me if there is a point to my explanation. I promise, there is.
A Christmas Gift
Last winter I researched to find a massage therapist who worked with MS related issues. I wasn’t looking for a “feel good” therapist; rather I searched through the AMTA website to find an experienced someone who might offer something helpful. My original idea was to give Kim a couple massages for Christmas and the idea grew into six.
After the first massage Kim felt great, relaxed and I hated to think that I was going to have to give her a stinging Copaxone shot that evening. Kim agreed that we needed to stay on schedule so I did the shot (we don’t use the auto-injector method) and …… NO STING! Zero. None. Zippo. We quickly credited the massage and had a repeat experience the next day. This continued for a few more days and a period of very minimal stinging rounded out to about two weeks. After the regular stinging returned, Kim booked another appointment a month later and we repeated the experience again.
The problem of course is that massages are expensive and most folks, including us, can’t pay for frequent massages. Kim used some of the remaining massages this year around Novantrone-time and it wasn’t until this summer that I thought of a way that I could try to put my analytical side to work making these shots less painful.
A Prat Plat
Since we use the “Injecting with the Copaxone Pre-Filled Syringe” method (not auto-injector), we need a place to pinch some skin fold. For us this has worked best on the posterior and hips. I noticed that sometimes the injection process (not the stinging part, but the actual insertion and working of the syringe) was more painful than other times. Being an accountant I looked to improve this by collecting data for analysis. To do this I developed a spreadsheet wherein I “roughly” tracked the coordinates of the site and the amount of pain Kim experienced in the injection process. We had a simple and subjective rating system. Shots were either; bad, ok, good or very good. We did not measure sting pain, only injection discomfort.
We quickly discovered that the sites that required Kim to lie on her back were more likely to be “bad” sites than sites on Kim’s tush. So we eliminated the front sites and continued with the back sites. We also learned that squeezing the skin real good helped. I also think I improved on my site selection in that I would try to stretch the skin out to get a better idea where veins and other sensitive stuff might be lurking. There are a lot of green, red and blue things within the keister and sticking a needle in them elevates the likelihood of getting a “bad”. I look for creamy or pinkish skin as I search for the “very good” sites.
Why Not Track the Sting Too?
You’d have though that I’d have thought of this. I didn’t, at least not until about two months ago. I revamped the spreadsheet and asked Kim to subjectively measure the sting from 0 to 10. Zero being no sting at all and ten being, well you know. Over the first 10 days the sting averaged 5.0. When we went back and revisited those (approximate) areas, the sting averaged 4.4 over the second 10 days. Over the third 10 days we averaged 3.5. I attribute this reduction to using the new info to select better sites and improve and reinforce my technique. Then Kim got her sixth massage.
The next ten shots, in order, scored; 0,0,0,1,1,1,2.5,2.5,3 and 3.5. I pondered this for a couple weeks as the average sting returned to about 3.5. I should note that when I say average, we get something like a bunch of 3’s and then a periodic 6 or 2. I know that there’s a math person out there who’s going to wonder about distribution so that’s what it looks like. Then in a stroke of genius…….
The Best 25 Buck I Ever Spent
I bought an extremely phallic looking massager at Target. It’s a Homedics Compact Percussion Massager (HCPM). The instructions say not to run it for more than 15 minutes; this is one I’m not going to question. The soft nubs it came with did not seem to move very well on Kim so I put the more solid nubs on and it glided about her with ease. We were very hopeful the first evening we tried it out. I massaged Kim’s back, legs and shot sites focusing about half the time on the shot sites. Kim did not complain about this. I started with it on a low setting and after 5 minutes I revved it up to high. Then with great anticipation we did the injection.
Ouch! Followed by winching and shaking; it was a very bad shot from the moment of the injection. It hurt, really bad and Kim gave it an 8.5, which is the highest she has ever scored a shot. I was momentarily devastated. But, how could the therapist have such great results, the dichotomy did not make sense. We agreed to try it again the next day with a delay between the massage and the shot. The delay worked out to 8 hours and Kim gave the shot a 2. The next day we did a 6 hour advance massage and the shot scored a 2.5. The next day we tried a 2 hours delay and Kim gave the shot a 4.5.
Flip Flopping to This Week
Since we alternate the shots on the right side and the left side, we decided to try a 24 hour time delay. Since the therapist massage lasted for several days, it would seem reasonable to think we could obtain a similar effect with the HCPM. For the last week I have massaged one side for 15 minutes and then done the shot on the alternate side. Kim’s sting ratings over the last 7 days have been; 2.5. 1.5, 1, 1.5, 2, .5 and 2! The sixth one was not a typo, one-half was the rating. The average is 1.6 and I have noticed that there have not been any “bad” or “ok” shots in the last week; they have all been “good” or “very good”. While I’m not ready to say there is a correlation with the injection process, there is a conspicuous reduction in “bad” and “ok’ shots that’s accompanying the sting reduction.
Like everything on the message board, I can’t promise that this will work for you, but it has been truly amazing for us. Kim can even carry on a conversation now after the shot whereas before she needed to be “dealing” with the pain. I also realize that it’s based on 7 bits of entirely subjective data, but it’s been a huge difference for us and we needed to share it right away. For us this is a breakthrough, and we hope you might have a similar experience. Besides, if nothing else, for $25 you get a nice massage 15 minutes a day.
One last thing I just remembered about technique. A nurse once explained to me the idea of, “Don’t inject slowly, it creates more sensation”. Meaning, there is something of a darting motion that gets the needle in faster and is more comfortable for Kim. It’s entirely not intuitive to do this, but it definitely gets me more “very good’s”.
It would be really nice to be able to put links in here
If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.