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Chronic Pain Message Board and Communtiy
Hi Everyone!
My name is Eleanor, and I’m a rising senior in high school. I’ve lived with AMPS since 2021, experiencing constant head and ear pain for a little over five years. I was diagnosed at CHOP, and over time I’ve learned how to develop a positive mindset while growing up and persevering through pain.
Living in pain is not something I would ever choose, but I’m grateful for how it has shaped me. I’ve learned that I can redefine any obstacle — if I can live in constant pain, I can do anything. Still, as much as I try to stay positive, AMPS can be an incredibly lonely condition. Chronic pain in general can be isolating. You don’t always want to talk about your pain to people who might only understand it through pity, but you do want to connect with others who truly get it. From my own experiences and conversations with doctors, that feeling seems to be common among people with AMPS or other chronic pain conditions.
That’s why I started a message board on ampsawarenessassociation.org — to connect kids and teens like me who have AMPS. I believe that reflecting on your pain, writing it down, and sharing it with people who understand can make a huge difference.
I would love to connect with anyone going through the AMPS journey, whether it’s yourself or your child, and feel free to join the forum on our website.
I’m really looking forward to meeting everyone!
♥️ Eleanor
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Hi Ele.
I wanted to let you know somebody’s actually reading what you wrote. It doesn’t help… to think one is alone.
I had to look up AMPS. As an electrician, all I knew was it’s a measure of current. LOL
Wow, AMPS… that is no fun at all. What are you using for pain? Has your mobility been affected?
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2 ReactionsWill Voltaren Gel help on long time shingle pain?
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1 ReactionWow, I have fibromyalgia and restless leg syndrome that was severely amplified by 30 rounds of radiation and 2 rounds of chemo. Now I am trying to learn how to manage increased pain levels, preferably without drugs.
I looked up AMPS. It makes my chronic pain issues seem less severe.
I am so impressed by your positive attitude. I always feel like I need to find ways to mentally rise above the pain (mind over matter). Unfortunately there is no “cure” for chronic pain. Keep up the good work with your pain management.
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1 ReactionI had shingle pain for 6 years, which developed into CRPS. I tried it all. Nothing worked. I am a Respiratory Therapist. I did find 2 things that helped tremendously. 1. Terrasil Shingles skincare ointment. It is about $30 a small tube. However not many stores carry it. The best place and cheapest is to get it on ebay. What it is made from is beeswax. If you apply it like every 3 hours. It does relieve the some of the pain. The next thing is apply aloe vera gel. Its cheap. You can get the walmart brand called equate aloe vera gel. Its like $4.99 a 20 ounce jar. But you must apply it like every hour, stops the pain. I just had a CRPS reoccurrence apparently I ruptured a disc in my spine. and it aggravated the CRPS. I was using ice, but that is a no no. you can alternate from cold for 1 minute to very lightly low heating pad for maybe 3 minutes. It is a terrible condition to have. My prayers for you, me and all of us suffering from CRPS from shingles.
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4 ReactionsYou might also try magnesium. Solgar chelated magnesium. 100 mg. tablets.. Ask your md if you can take 3 a day. for the pain. that also does help
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2 ReactionsWell, Eleanor. You're one tough young person. You're going somewhere, kiddo. I have no idea where, but I want you on my side. I have had 30 or more years of chronic pain -- nasty. My pain is sorta similar to AMPS, though it has a known sourse, my back. Nevertheless, it is everywhere now. I generally can generate a positive attitude and I am truly grateful for my life. While pain is a terrible bedfellow, so to speak, you are dealing with it in a wonderful manner.
I wish you a long, lovely life someday free of pain. Sam
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