As the readership of this blog grows and the Fibro-Fun House (my Facebook page) expands I am getting another round of fellow Fibrates asking me, "How did you get better?". For some reason lots of you have been turned on to my strange brand of what I call Keepin' It Real Optimism, and for this I am so grateful! I am glad to share my journey and learn from you. I am thrilled to see you networking with each other and forming friendships and support amongst yourselves as well. There are so many of us with bloody and bruised heads from banging them up against the wall of living with Fibromyalgia, and I think more than a few have found a place to come where they can stop beating themselves up and relish in the fact that there are SO many others in the same situation. If I had a nickle for every time I have seen "I don't feel so alone now" I would be a wealthy woman! By the nature of this illness and how it fits into the world of modern medicine we have been made to feel very isolated. I believe here we have found a community where not only are we believed and accepted, WE DON'T EVEN HAVE TO EXPLAIN OURSELVES! Its phenomenal! To find a group that truly understands the trials and tribulations of living in Fibro-hell is simply a relief. Strong support is key in reclaiming your life and we get it where we can find it...and if Facebook is where we have found it than so be it!
Oh what a delicate symmetry health is! I have spent years learning about my own body, what works, what does not, what matters and what makes a difference. I have uncovered what CFS & Fibromyalgia really and truly are IN ME and have extensively researched and read and formed my own opinions and conclusions about health and wellness in general. Unfortunately I feel we are being sold a bill of goods by modern medicine. Not maliciously, and don't get me wrong, without it I would be dead at least 5 times (no exaggeration) by now, but when it comes to day-in-day-out quality of life they are really missing the boat! I argue with my best friend about this constantly. She is a very healthy person and goes to the doctor a few times a year and has never had a problem with her health. So when I go off on my rants about the necessity of a small amount of unprotected sun exposure daily necessary for Vitamin D absorption to prevent diseases, how this "5 small meals a day" crap is a way of compensating for the horribly processed and preservative filled diets we consume or she watches me take my buckets of supplements when we go out to dinner, we tend to not agree!
But if you want to know how I "got better" (I actually call it "managed", better means it is over and Fibromyalgia for Leah is far from over) I set out on a quest to find health and have not stopped. I tried endless medications and took every nutritional supplement under the sun. I saw specialists to treat the infections in my body that had infected my central nervous system. I sought out alternative therapies like acupuncture and gave up my career and worked very hard, and still continue to, in order to keep life's balance. I watch my diet and exercise and manage my stress and get lots of sleep each night. I got "managed" because I refused to have it any other way. But it has flipped my reality on its head. What worked for me is most likely not what will work for you, we are all different. There is no magic pill that is going to take this away. But with determination and perseverance and persistence you can find a way to start climbing out of that well of misery and pain that threatens to engulf you day in and day out. But only if you insist on it.
Thanks for joining,
Leah
I know that I have found what works well for me is I finally stopped taking all of the medications. Last time I was on then I was on 21 at once. And they were certainly only hurting me.
ReplyDeleteOnce I started taking testosterone that really started to help me feel a little better everyday. I don't have as many consecutive bad days now and I can handle the pain a bit better than I used too. This makes sense cause all that I have read say that auto immune diseases are estrogen fueled.
I had to stop working. It was quite literally killing me. Walking pneumonia and all. Bad stuff. And while I have sincerely learned how to adjust with that, it has really helped me.
Removing as much stress as humanly possible in my life has done wonders for me.
I have cats. When I lived with my mother we had 10. When I moved up to Oregon I took 3 with ne. They all lice very well. Happy and healthy. They are my children. But they keep me happy, calm and company when I am I'll and cannot move. There have been times I have have fallen trying to get out of bed and been unable to get up and they would come sit or lay down beside me and keep me company until I could move.
I always have music on me. It really helps me. I enjoy driving too. They both keep me calm. It's something I can still do that doesn't require much on my end.
Every now and then I ask my wife to stick me, acupuncture in my back and thatveill help too. If I can get in for physical therapy and have soft tissue work done on my back that also makes a world of difference.
Now in Oregon looking for new doctors. I think I found a DO that I will use. But getting a rheumatologist is quite hard up here. So I am crossing my fingers and hoping for the best on that one.
I haven't changed my diet much. I am a avid coke drinker. For some reason it really seems to help me. But ice pretty much dropped the candy and don't do fast-food as often as I used too.
It really is different for all of us. It would be interesting to see if there are a couple of things among everyone that has made a positive difference though.
Namaste-
It's a wonderful community of "fibromites". We reach out to each other and I've been fortunate to find some friends for life! Even though we've never met face to face it has helped so much. We support each other and that helps....even on the worst days.
ReplyDeleteAs far as help......a mix of traditional and non traditional methods have helped.
Thanks!!
I had a doctor that has been managing my pain, but he moved his practice, so I am struggling to find a new doc. My primary is 'covering' me, but does not deal with chronic pain patients. I have hit a brick wall at every turn. I really lost it last week after my encounter with the last pain center I contacted (the woman doing the intake was incredibly rude, and made me feel like I was a weak junkie, looking for my next 'fix'). It was in that moment that I decided to take charge of my pain, and try to wean myself from my meds. I am on three, and am starting with one at a time. As I type this, I have begun the process of weaning off of percocet.YIKES!!! I am determined though. I hope I can do it. I was up last night with 'creepy crawls', 'heart palpitations', and 'nervousness'. I may not be able to go off completely, but I have to get down to a much lower dose. If I can do that, I will feel so much better. I may wind up needing the medication, but my hope is that I can get down to a much more manageable dose, and won't have to find another 'pain' doctor. One can hope.
ReplyDeleteKimberly- I did the Percocet and Vicoprofen dance for a year and a half and it was hell. They really do create more pain in the long run. Coming off you think you are gonna die from pain but one day you will wake up and not hurt so bad. Do it SLOWLY and be kind to yourself!
ReplyDeleteHunter- I too believe all the meds make for more problems. They dull us and interact with each other in strange ways. But when you find your perfect "cocktail" that makes daily living possible it is GOLDEN!
Leah.. I look forward to your writings daily!!! You are an incredible person.
ReplyDeleteI am on vicadin 3x per day and Savella at 25 mg in the am and 37.5 in the pm and its still not working. My pain is in my wrists,hands and fingers, my lower legs,ankles and feet; Sometimes my neck. I just was told my Vit. D is very low. I asked my Rheumy last week, will I ever get better. He said I dont know. Lets just keep giving u meds and hopefully, we will get the right coctail..Well, that brought me into a low spin, but I have my kids to keep me going. does diet help the pain and what kind of diet? I will try anything!!!!!!!! I was told Gluten free by a friend would help( she doesnt have Fibro)..Has it worked for anyone? If anyone would reach out to me, I am open to any idea how to get thru a day without or minimal pain... Sometimes, I think sometimes my Rhemy is arrogant and just doesnt care..Thanks for listening...xoxoox Renee
Post your plea for advice on my Facebook page...I guarantee many will jump to give you advice! I eat unprocessed, unrefined, lots of veggies, whole grains. I cut out preservatives, processed, white bread & pasta, sugar, fried, etc. I am in no way perfect but eat better more often than not and I know very quickly if I have been bad...I hurt more!
ReplyDeleteTo Hunter- If you are a Coke addict at least I hope its the kind from Mexico made with real sugar, not high fructose corn syrup like the stuff made in the USA. They sell it at Costco- Hecho en Mexico!