Apparently I’ve coined a phrase, according to some of my peers on a FetLife group I’m on for kinksters with fibromyalgia. LOL
I mentioned in a discussion about the various vitamins and supplements I’m tweaking and using to manage the symptoms of my fibromyalgia that I was “Frankensteining” my fibro.
I guess that was a hit. LOL
Since going off Cymbalta cold-turkey a few months back, I’ve been actively seeking out supplements and vitamins, researching, and trying things. Right now, after over a month on malic acid, I do believe I’ve got the daily pain under control. In that way, at least, I’m feeling pretty darn good (now that my flare that started in October seems to be over). Recently, my “average” daily pain is far lower than it was.
My current target is fatigue, sleeping issues, and brain fog. Several things have led me to the conclusion I might be low in B-12, so I’ve added a B-12 sublingual to my mix, while taking away the daily B multi-vitamin (since several of my other vitamins and supplements also contain various Bs) and literally in just a few days, I’ve noticed a HUGE jump in my energy levels. (Now if the moons on my fingernail beds all come back, I’ll know without a doubt that was a 100% win.) I plan on working on my current dosage for several weeks and then tweak it back incrementally until I notice a decrease in energy/increase in fatigue to find my maintenance dose.
Fibro is soooo much fun. (NOT!) But I’m more convinced now than ever that getting off the Cymbalta was the right choice for me, although it might not be the right one for everyone. That leaves me only taking my generic Flexeril (10mg) at night for a daily prescription, with my Percocet in reserve as a safety net drug for severe break-through pain, and a prescription for Anaprox (which is, in essence, 2.5 Aleve).
I’ve also been gratified to get so many notes from readers of my latest release, It’s a Sweet Life, where the heroine also has fibro, CFS, and arthritis. It’s resonated with so many who are also “invisible” sufferers of these and other chronic conditions. I’m glad it’s been so well-received. I’d wanted to work a heroine into a book with a chronic condition like mine, and Libbie presented the perfect opportunity. I wanted readers not just to simply feel sorry for her, but to empathize with those like her, to understand how difficult it is for us on the inside, so to speak, even though to people who don’t know us very well, it might seem like we’re either fine, or faking it, or looking for sympathy.
We’re not looking for sympathy. We’re just looking for understanding and accommodation. Believe me, WE want more than anyone else the ability to have a “normal” life. We didn’t choose this, it chose us.
So excuse me while I retire back to my mad scientist laboratory to go research some more supplements.
WTG Tymber!
I loved the intro to your book (and thought the story was wonderful!!)- just wish I could persuade my other half to read it.
I have Rheumatoid arthritis and fibro and he just doesn’t understand why one day I’m fine and the next I can barely get out of bed.
Hugs xx
@SusieJ – Thank you. š I’m lucky that Hubby and Sir both understand and are very protective of me and know why sometimes my energy plug gets yanked out of the wall.
Thank you so much for this post. I am in a prolonged down swing at the moment in my 20 year journey with FM and Chronic Fatigue. I’m feeling rather lost and discouraged with the constant “1/2 step forward, 2 steps back routine. It helps to hear from others about their experiences with FM and CFS in an honest and non-whiny account. My family understands and supports me as much as they can. The person who is in my way the most is ME damn it!!!
Thank you for being open and honest with your experiences and for writing such wonderful books that open my mind and help me to escape.
Tymber I can’t tell you how much it helps me in my Fibro struggles to know that I am not alone, you help me to see that other people struggle with the same issues and that it’s not just me or that every doctor I have been to is a quack :O)
I love that you gave your heroine FMS/CFS there are so many people (members of my own family) that think it’s all in my head or that it’s laziness, getting the message that this is a real condition with real issues to more people makes you a hero in my book.
On the supplemental B subligual I found if I used a B-complex with heavy B-12 it worked better than just B-12. Good luck and know you are close to my heart and in my thoughts and prayers. (or sending you gentle hugs)
Tymber, I love that you have used a character that has a non curable auto immune disease. I have “Mixed Connective Tissue” which seems to mimic everything. I’ve been told that I have, fibro, lupus, arthritis etc…I have lost 2 out of 5 senses (smell & taste) and have numbness on left side of body. Feels like I’m on Novocaine all the time. Recently went to doc and he said my symptoms are leaning towards lupus. Thanks you for writing such a great character in Libbie.