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Jan 05, 2017 8:50 PM

I would love to hear from others that have this horrible disease. Tell us what meds your on, your pain levels, shit your doctors,v tell what ever you want about your situation with this

Jan 05, 2017 8:51 PM

I'm in Tx and it's 29° and my pain level is thru the roof. We have a chance of snow tomorrow

Jan 05, 2017 11:30 PM

I'm 13 I have been taking lyrica since I was 7. I wake up with a 4-5 everyday and have to go to school. Sometimes I'm at 8 or 9 during the school day. When it's to much I hold my breath cuz I forget to breath my friend usually has to remind me to breath. Have you tried hand and foot warmers when it's cold also try removing gluten from your dite. The inflammation can cause pain. The best thing to do is to stay as active as possible

Jan 06, 2017 12:39 PM

Wow. You are so wise at just 13. I know it's been hard earned wisdom. You are an inspiration 🤓.

Jan 07, 2017 4:18 AM

I have RSD and was on 8mg of dilaudid 5 times a day plus Xanax and Klonipin. You all know where that has landed me. I am only on 4mg of subutex now 12 hours apart with a triple break and rods plates and screws in my ankle and I am in excruciating pain. Only on neurontin now and hating life.

Jan 07, 2017 12:08 PM

Thx tomatad. My mom and I really try to keep my pain under control here are something that could be helpful that I do. I have a Fitbit and every week my mom makes a chart with the data from my Fitbit and this pain app. Removing gluten has helped me have a little less pain the gluten stays in your system for 6 months and gluten can cause inflammation which for us can cause pain. I also keep hand and foot warmers in my purse backpack and riding bag with our condition we need to stay active even if it hurts really bad take a walk with your spouse or dog take a bike ride with a friend. Theses things don't have to be long the more active you are the more your brain will think your fine and the less pain your in. Also set some goals for the month even if you just get out of bed and go do the dishes. Remember in your home you can always sit down and take a break. I also do epson salt soaks it relaxes your muscles. And one more thing they have these in patient pain clinics for kids so I believe they have one down in Arizona as well

Jan 07, 2017 12:16 PM

You know I have a fit bit too but have never set it up. My husband has one too so I will get him to help me set it up. Gluten free is where I'm headed. Paleo &30 day reset are my food choices goals. Also to go for walk. You are so right about moving. Keep moving and breath are you amtrack these days.

Jan 07, 2017 12:18 PM

That would be "my mantra these days"🤓

Jan 10, 2017 6:02 AM

I need some real help today everyone as I cannot have so much as a flexaril now . Gonna be in a wheelchair today because pain is at an 8 already. How can you live with RSD and fibro on 800 mg. Of Ibuprofen? This is awful. My broken ankle has developed a hard lump on top of my foot. Please everyone who reads this say a prayer for me.

Jan 10, 2017 10:23 PM

Have you looked at spinal cord stimulation as an option? It doesn't cure the pain but it will mask it to help you live a normal life... Boston scientific has the highest quality product. Ask your doctor about it

Jan 10, 2017 11:52 PM

My mom saw it and my doctor has mentioned it a few times but my mom doesn't want wires in my back. I don't why if it could help. Dose everyone else pain go between limbs? Mine will hurt for like five minutes in one leg and switch to the other leg in seconds I know it's weird but this always happens when I have a mini flare

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