Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hello everyone! Happy New Year! It has been a long time since I have posted. It has been a long time since I have felt well enough to be on the computer for very long. I hope you haven't forgotten me, lol.
Anyway, I was wondering if anyone has experienced these symptoms being on the patches and only changing them every 3 days:
I start feeling grouchy around the 2nd day and start having increased pain. I have heart palpitations and feelings of anxiety, which I chalk up to my pain levels increasing. By the night of the 2nd day I take an Alleve (not sure I should be doing it but it helps somewhat). By the morning of the 3rd day I feel very grouchy, heart palpitations still, pain, and am very grateful for noon to roll around because that is when I get to change them. I also notice I start feeling naseous and bubbles in my tummy to put things mildly, lol.
The good news is I went to my pain doc and she has agreed to let me change them every 2 days, whew, but the bad news is I have to wait another week and 1/2 until the insurance approves of the change!
So, have you experienced this also? And, do you have any suggestions for me to get me through the next week and 1/2? The patches work well when they are working, lol. We finally got them to stick better by using alcohol to clean the area and use Tegaderm to cover them, especially when I shower. Oh, and I'm on Oxycodone for breakthrough pain and Robaxin for a muscle relaxer. I have connective tissue disease (doc says she thinks it will become Lupus) as well as Fibro, etc. The docs also feel I have dermatomyocitis.
Ok, thanks a lot! It feels great to be back and able to post!
Hugs!
Sheri
Anyway, I was wondering if anyone has experienced these symptoms being on the patches and only changing them every 3 days:
I start feeling grouchy around the 2nd day and start having increased pain. I have heart palpitations and feelings of anxiety, which I chalk up to my pain levels increasing. By the night of the 2nd day I take an Alleve (not sure I should be doing it but it helps somewhat). By the morning of the 3rd day I feel very grouchy, heart palpitations still, pain, and am very grateful for noon to roll around because that is when I get to change them. I also notice I start feeling naseous and bubbles in my tummy to put things mildly, lol.
The good news is I went to my pain doc and she has agreed to let me change them every 2 days, whew, but the bad news is I have to wait another week and 1/2 until the insurance approves of the change!
So, have you experienced this also? And, do you have any suggestions for me to get me through the next week and 1/2? The patches work well when they are working, lol. We finally got them to stick better by using alcohol to clean the area and use Tegaderm to cover them, especially when I shower. Oh, and I'm on Oxycodone for breakthrough pain and Robaxin for a muscle relaxer. I have connective tissue disease (doc says she thinks it will become Lupus) as well as Fibro, etc. The docs also feel I have dermatomyocitis.
Ok, thanks a lot! It feels great to be back and able to post!
Hugs!
Sheri
went the first 10 years of lupus with basically no pain meds..other than PRN.but last few years,have been a must!the bummer is,if you are looking for 100% pain relief..
you about would have to be on an IV,
med..which isn't an option..not being dramatic,or dismissive
but,unfortunately..at least in my experinece..it's a matter of what pain level you can live with..
you also have to be careful,as far as affecting your respiratory and pulmonary issues,when on these..
I didn't notice your dosing..how many MCG.of fentanyl..how much oxy..when they tried to move up my patch dose..i went into distress..had to go back down for vitals to be in safe range..
yes,on my 2nd day,I have increased pain..
yes,on pain management,you have to adjust doses,and see where you land!but,be careful..
I wish the best for you..and hope you find a management plan that works for you..feel better soon:) ..