Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Introduction

May 03, 2014 7:52 PM

Hello, everyone. I am a 47 year old mother of two adopted children who are now teenagers. I was diagnosed with Fibromyalgia about 15 years ago. Since then I have contracted Lyme Disease, developed RSD/CRPS after breaking my ankle and have most recently been diagnosed with rapidly progressing small fiber polyneuropathy & arthritis. My body has high levels of inflammation that has been chronic for years. Needless to say, I experience a great deal of pain on a daily basis. I have been unable to work for years. in order to even function and be present for my spouse and my kids I have been taking Cymbalta, Trazadone & Morphine Sulphate daily. Without the Morphine I am completely unable to think & be part of the family because of the huge amounts of brain energy it takes to just keep the pain at bay.

I am currently waiting for my neurologist to get back to me with a decision about whether or not I will be able to begin steroid & IVIG treatments to hopefully slow or reverse the neuropathy.

May 12, 2014 2:04 AM

Hello and welcome mamadeb67. Thank you for sharing your story, surely other community members can relate to one or the other thing you wrote and might have some questions for you, or maybe some tips on what helped them?! Did you hear back from your neurologist?

Jun 19, 2014 9:09 AM

I did hear back from my neurologist. She put me on 70 mg of Prednisone daily as part of a treatment plan. I was supposed to stay on this dose for a month and then taper down over the course of the next month. I became quite ill after only one week, ended up in the hospital overnight and was told to taper down immediately. I had severe chest pains, high blood pressure, shakes, nausea & constant pain. it actually exacerbated my neuropathy even more. Now I have an appt to see my neurologist next week to determine what should happen next.

Jul 17, 2014 9:56 AM

Hi mamadeb67, I am sorry to hear about your reaction to prednisone and the according consequences. Hopefully you and your neurologist were able to find some good next steps?!

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