I have had Fibromyalgia since mid 2006, acquired during a long bout with a viral infection in my central nervous system. I used Neurontin, Percocet, Cymbalta and Lyrica in the following 4 year after to manage my pain. While on Lyrica I slept a lot and ballooned up like a, well, balloon! I did get off of Percocet, though, and had no pain. Despite that wonderful result I went off Lyrica and back to Neurontin, using Tramadol and Flexeril for pain. Then it just went to Flexeril, and only when I was working. I had, through diet, exercise, state of mind, what have you, got my Fibro to a pretty manageable place. Life was looking up. I had plans to pursue a masters degree and was working as a makeup artist more and more. We even decided to get a puppy life was so grand and on such an upswing (plus Yorkie was bored), so we rescued Porkie. And then I entered what one would call a manic phase, although never having been a diagnosed bi-polar, and had 2 strokes centered around the purging of haunting memories of a youth unaddressed. I was put on Prednisone to manage the treatment of the rare and serious Vasculatitis that had caused the strokes and preceded to turn into a complete manic speed freak. That was real interesting. But I had NO pain on Prednisone and I was flexible and could snap-crackle-pop myself into place and my muscles were not tight and painful. I have weaned down and tomorrow I take my last little dose and I am off it. And I can barely move.
I feel like a 27 year old trapped in the body of a 93 year old. It hurts just to be. I can barely make it through my morning walks and can hardly stretch, any part of my body is tight and in pain. Just the thought of getting up from a chair an excruciating vision of screaming feeling. So much damn feeling! I have completely deconditioned, although how I am not sure, and have no stamina and am so constricted and just in freaking pain! It is interesting, this turn of events. This wonderful place life has deposited me again. When I got through the worst of Pancreatitis I had a plan and was going to march forward in my life. Then I got CFS that led to Fibromyalgia and I had to get that monster under wraps. It took everything I had and then just when, once again, I am on the cusp of re-buliding, I stroke twice. And that bumps me back to the beginning of Fibromyalgia, with a mentality of having just come off some pretty high doses of energy-pumping steroids and a deep and powerful frustration for how many times can one woman start over?
I have faith I will get the mean and ugly Fibro dragon back in her cave, for with all I have been through there is very little that can keep me down. But I am tired of this! I feel like a port city that keeps getting hit with devastating, tragic and wreckage-producing natural disasters. I just want to feel good again, but have to be patient. I will feel good again, it is just gonna take some time and a lot of work...
Thanks for joining,
Leah
I know you will kick that dragon's ass! Although I don't remember (anymore) not having CFIDS or Fibro, there are days that are downright...well, good! And then the backslide. Faith and forced positivity are my savior! Thanks for sharing!
ReplyDelete~~Ann Wilkinson
Loving your P.M.A, its contagious. Have had Fibro since 1997 & so understand the weariness it causes. Thank you for being up lifting.
ReplyDeleteJane Wilkinson
(UK)
you go girl, dont let that dragon pull you down, kick him in the ass, all the way to the moon. Have you tried savella, I am taken savella now, but i also started used compound hormones and they have done wounders for me. I pray for all of us fibro fights, that God will give us painful day, mental clairty to thing, and energy to take care of our families.
ReplyDeletePositivity is all that keeps us going,hope and support from others.Despite this setback Leah you are an inspiration to us all,you say it how it is and put words to our silent screams.
ReplyDeleteWelcome to my world........ I know just how you feel... It's like living with a huge monster following you around all the time just waiting for a weak moment to kick you while you are down.
ReplyDeleteHi, Leah & the rest of the family. I literally feel for you, myself being in a now 2 month raging flare with no end in sight! I have the answer to your question... How many times can you start over? Well, I think we all do that everyday we force ourselves out of bed! I personally have the bipolar diagnosis & there is so much weight on my sanity that fibromyalgia is forever on the back burner! My pysch doc won't allow me any of the helpful mess becausebthey accelerate the bipolar cycles. She doesn't understand that I would rather be insane & functional then purple/ black! My regular doc is great but careful not to step on toes. So I struggle thru with vidicon for spinal problems due to an auto accident, the precursor of my fibromyalgia, and lidoderm patches, which are like a candied bandaide! Time to go back to the neurontin again! Thanks for listening I justvwant to validate you are not alone in your suffering and frustrations.
ReplyDeleteOops & I guess some fog to boot today, sorry about the typing! I meant mess not mess and thevrest is just a mess!
ReplyDeleteOk, darn spell check or something! Medications, is what I was trying to say!
ReplyDeleteLeah,
ReplyDeleteYou are truly an inspiration. I wish I had your positive thinking. I have been on every medication known to man. I finally went to a Pain specialist who reluctantly put me on Vicodin. He said I was "outside his box". He had never had a Fibro patient that had tried everything. While my doc's are still worried about my damaged liver, I told them I would rather have 10 to 15 years of living, instead of existing for the rest of my life and not making it another 10 years. I'll worry about my liver when we cross that bridge. I suffer from sever depression too which drags me down that black hole every day. On a positive note, the Vicodin is helping and I am currently doing physical therapy twice a week and getting to walk my dogs here and there.
Thanks for your strong spirit!