Posted 1/17/2014 4:54 AM (GMT -7)
Hello, though I would introduce myself and share a bit of my chronic pain history. I''ve been on this journey since I was 12, I'll be 55 late this month tho I don't feel it. I refuse to grow up.
I started with chronic migraines at age 12 which my dad and sister also had/have then PMS, monthly cramps that caused me to pass out in school, infertility a hysterectomy at 25 a year later I was diagnosed with fibromyalgia in Jan. of 85. Sister and cousin both have fibro as well. Sister has lupus, the three of us share several other conditions too.
I know I am one of the blessed, I didn't go through the typical 8 physicians searching for answers, or deal with being told it was all in my head.
Currently I have a fabulous team of doc's handling my care. I have been with most of them at least two years some five or more. I have been on disability for 4 years, it took me 3 years to get it. I have a wonderful home based art studio built by my husband to my specific needs and abilities. until about a year ago I was able to teach classes in my studio, do shows with help and be an active member of our local arts community working hard to see that creative's with disabilities were treated with respect and included in the arts. Something that was aproblem in our community as is ADA compliance. now I am unable to contribute in any meaningl way but I believe gettting off fentanyl will change that.
I fit the typical fibro profile, type A personality, perfectionist, workaholic, survivor of physical and sexual child abuse, uenable to relax even in sleep, insomnia since childhood.
For over 15 years I was able to control the fibro and migraines with an Amish "healer" using herbs, reflexology, muscle testing and such but due to a break in trust it stopped working and the pain came back with a vengeance and brought its friends TMJ and planters fasciitis.
Fast forward to 8 years ago and how I found you all. You can see in my signature my current dxs, several I am hoping can be reversed by going off my fentanyl patches. I want to have a written plan with my Internist and not go into this unprepared. I've been on 125mcg every 72 hours for 8 years along with a boat load of other meds. We have cut out a lot of the stronger ones in the past 6 months but as of now I take 23 meds and supplements a day. I believe a lot of my problems are medication related, central sleep apnea, bowel impactions, inability to stay awake, audio hallucinations, weight gain but no appetite, food makes me sick or gag, can't take a shower it takes my breath away, overheating, lots more.
I know the central sleep apnea is caused by the fentanyl. The past year I notice I don't breath well even awake, I have to remind myself to breath. The better part of 2 years now has been spent basically bed bound simply because I have no energy, overheat if I move, fall, stumble, get dizzy, look like I'm drunk even with my cane or wheeled walker. Sleep for up to a week so deep I can't be woke up and have pain inthe 8+ range despite patches, b/t meds, trigger point iinjections weekly and other meds to help with pain.
Other than migraines, fibro, thyroid issues which are transient all my conditions have been gifted to me in the past 8 years starting with spinal stenosis and ending with sjogrens and at last a confirmed dx of lupus after 15 years of back and forth, the call came yesterday, 100% confirmed I have it.
I also have developed audible hallucinations ? in the past few months tho I'm not sure what I haven't had them before. I hear radio stations and telephone calls in my left ear only. My opinion they are from being alone with no support system other than a most wonderful husband. Most of my friends have disappeared and as for family, well. I keep a positive attitude most of the time thanks to my faith but I do have a bad hour here and there. I miss my friends and the art community I have had to give up. there is a lot of hurt if I let myself think about it from family but God and my husband give me peace about that when I listen.
Having Addison Disease makes it absolutely imperative that I avoid stress, drama and confusion. An Addison crisis is the worst and scares me and my husband big time. I have allowed others to stress me into crisis a couple times but never again. We have vowed we will move away if that is what it takes to keep me safe because we have learned some people just don't care or don't get it no matter what you tell them or they read for themself.
I apologize for writing a novel and getting on a rant. I hope I haven't broke any rules, I read them and I don't think I did. , I hope you stayed with me and that I didn't jump around to much. My brain fog is a constant companion and Can get very bad depending on which of my bodies guests are flaring.
I am looking forward to getting to know you all, learning from you and having a safe place to come as I start this new adventure of weaning off my fentanyl patches. BTW, I found the best and most comprehensive info on that subject herd on this board, I thank you all so much for sharing your knowledge, personal experiences, and thoughts on that and other topics so vital to the chronic pain community.
Stay positive in all that your chronic conditions bring your way. When you feel like asking "Why ME?" Ask "Why not me?" then praise the Lord for your unique story of love and compassion.
Chronic Migraines, Fibromyalgia, Spinal Stenosis, Addison Disease, Interstitial Cystitis, Lupus, Thyroid Disease, Central Sleep Apnea, Degenerative Disc Disease, IBS, Uundifferentiated Connective Tissue Disease, Restless Leg, Sjogrens Syndrome. Wow, I'm tired.