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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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3 ReactionsHo my name is Dana (male) I’m 63 years old, disabled, and living on Social Security.
On March 1, 2024, my life changed dramatically after a bad motorcycle accident. I was hospitalized for four months, and the accident broke my ischium on my left side—the bottom half is missing, and I’m assuming it was left at the scene. Since then, I’ve been in chronic, unbearable pain for 27 months. Medical staff have told me there’s nothing more they can do and have pointed me toward Band-Aid treatments like spinal implant blocking techniques or pain medications. The only relief I get is from a combination of drugs, but I worry about the long-term effects on my kidneys and liver. I don’t want to spend the rest of my life confined to bed and dependent on medication.
In the x-ray it shows the bottom half of my left ischium is missing. You can compare it to my right side to see that it’s full. It’s a little hard to see, but the bottom half of my left one is gone, and that is meant to support you while sitting. My sitting position is my most uncomfortable position, where the leg pain starts getting much worse, so sitting’s not an option. My only relief is laying flat; standing doesn’t help.
Having a hard time pointing doctors in the direction of this broken ischium might be the reason reason for my pain my constant pain.
I came to this conclusion because there is such a thing as ischial bursitis, I looked this up and it’s a popular pain usually caused by people sitting for Pro long times, but my case jagged bone that’s broken, supporting my weight, the same as rounded mother nature ischium?
Any medical advice? please don’t mention drug therapy or medical Marijuana Ive tried them👎
I am a fan of dry needling done by PT but it is only successful on the muscles that are tight due to injuries and your pain sounds like it is from
Bone injury so I don't know that it would work for you.
Hi Elenor- My name is Bill. It seems all these abbreviations somehow connect to each other. In my 20’s I had a severe parachute accident. Compression fractures of lumbar disks. The resulting back injury caused DDD. At 49 I reinjured myself. Pain 10! 6 months in pain management clinic, I’m now an emaciated addict. First surgery of 14 in 2/2005. 3rd surgery I coded on the OR table. They nicked my femoral artery attempting an anterior fusion. During the scramble to resuscitate me, they cut a sympathetic nerve. Ended up with RSD, which later became CRPS. And later complicated by FBSS Thoracic spine, FBSS Lumbar Spine, facets disease. Fused or stabilized from C3-C6, T2-S1, fused L SI joint, Severe arthritis throughout. In 19 years I lost my career, my marriage and was destined for life long pain. I now have a SCS and Intrathecal drug pump. I am dependent on opiates for life. I end in therapy for an adjustment disorder of career loss, financial loss, Range of motion absent in spine. Pump refills every 2 months. I have tried to adopt your attitude towards life with pain. When I added all the other things wrong I was in a deep dark place. Took years of therapy to stop my constant mental suffering and ideating suicide. I’ve never reached your level of personal zen and acceptance of your/my existence. But I wanted to live. That’s my story, and now I want what you got. Help me figure it out if you can???
@dohellth Dana it’s all in your head and by that I mean your answer lies with your brain. There’s a lot of study on the mind-body connection and you should look into since traditional medicine hasn’t seemed to be affective. Here’s some places to start looking and I hope you find peace with your pain.
https://www.nccih.nih.gov/health/providers/digest/mind-and-body-approaches-for-chronic-pain;
https://www.youtube.com/watch;
https://www.pathways.health/blog/the-mind-body-approach-to-pain-management/