Phantom Infusion Site Pain??

I've been pumping a year. Lately, I occasionally have a day where I have pain in spots or the area where I put my sets. It's mostly the sites between the waistline and ribs that have the pain. I rotate my sites and only go back to that area after I've used at least two other areas of my body. I never insert closer than an inch to a site that was used within a couple of weeks or month. Are these phantom pains, sympathy pains, or do I need to modify my rotation? Does anyone else have this?

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Permalink Reply by Tom T on July 22, 2010 at 1:28pm

It's probably legit. Does it seem like the irritation is at the skin level? Or deeper in the tissue? Does anything press up against these sites at any point during the day or while sleeping?

I've experienced two types of pain, both rare and more common with my cgm transmitter than infusion sets. The deeper pain is usually caused by having something pressed up against the infusion set -- like when carrying something, falling asleep on it, etc. The site usually becomes inflamed and VERY sensitive to pain.

The 'skin level' pain is usually when I put it on my abdomen in an area that does a lot of bending. It will sometimes rubs against the area skin when I'm more active. Not sure if any of this helps:)

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Permalink Reply by Karla J Sherer on July 22, 2010 at 1:58pm

What I have is occasional. It is in the sites I've used but not while I'm using it. It will be after the site has healed and nothing is there - no red mark or anything. Completely healed but pain inside the tissue. Ache would be best description. It only happens occasionally but will come and go for 2 or 3 days then go away. It is similar to the pain you'd get if a set got sore and you had something pressing against it only there is nothing there. I'm wondering if I'm using those certain sites too often.

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Permalink Reply by Tom T on July 22, 2010 at 2:17pm

I'm not sure then, but I think you're probably on the right track with rotating more. Or maybe ask them to send you a different infusion set to try? Maybe one that doesn't go as deep?

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Permalink Reply by Karla J Sherer on July 22, 2010 at 2:37pm

Tom - good idea and that is what I've been trying lately. Trying the angled ones to see if that makes a difference. Thanks.

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Permalink Reply by Tom T on July 22, 2010 at 1:43pm

I should add clothing to the list of agitators. I often use my thighs. If I place the infusion set underneath the pockets, then the pump/wallet/keys/etc can rub against and irritate it.

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Permalink Reply by TS on July 22, 2010 at 2:06pm

For years I couldn't use my abdomen above my belly button. For some reason, I would get pains there. The pain felt like fresh needle sticks and would be random and come out of nowhere.
Perhaps you are healing from the outside in instead of the inside, out - you might try putting some aloe gel or just a bandaid on after removing your infusion sets to let it heal inside first.
But, bottom line, I'd just avoid the area above the belly button. i was told that men should use above the belly button and women below by my first educator more than 15 years ago. For my father and me, this advice worked very well - he'd get those pains when using a site below the belly button and I would with sites above. No idea why.

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Permalink Reply by Karla J Sherer on July 22, 2010 at 2:35pm

That's it!!! That sounds exactly like what I'm having and that is exactly where I'm having it. It feels like you just put in a set and it isn't a good site or that you took one out and it isn't healing. I hate to not use those sites. They are my favorite and don't usually hurt while the set is in. It's after it heals. I have had some there that take longer to heal so you may be right about how it's healing. I also hit more bad spots there like muscle, nerve, or vessel or whatever it is that hurts like crazy and you have to take it out. My problem with only using below the waist sites is that even though I'm an old lady, I have to dodge the stretch marks from those big babies I had. That doesn't leave a lot of spots. I've got nerve damage on my back side from multiple back surgeries so even if I can reach some of sites back there I have limited areas I want to stick. I guess I'll have to find some new ones somewhere. Thanks for letting me know I'm not nuts.

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Permalink Reply by TS on July 22, 2010 at 2:45pm

I use the lower abdomen and the "chicken wing" area of the arm - that works really well for me to give the stomach a rest now and then. I get longer infusion sets and string the canula behind the arm, through the bra and hang the pump from my waistline. I especially do this in the winter when I wear long sleeves, but even short sleeves cover most of them.
I used to use the upper thigh, but that's for the CGM now.
good luck.

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Permalink Reply by Tom T on July 22, 2010 at 7:30pm

very interesting! i never use below my belly button because the insertion hurts like crazy. i wouldn't have guessed that it would be different. very nice!

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Permalink Reply by Richard P Cosgrove on July 25, 2010 at 9:05am

I know what you mean but it seems to go away in a week or so. Mostly I would get the pain the the used site if I lean up against it or carry something pressing against it but that seems to be the only reasons I can give.