Fibro Fog
Hello all,
Wanted to share my experiences…interesting food for thought, maybe?
Diagnosed with fibro in 2001, came down with symptoms while pregnant with my 2nd child in 2000 (doctors told me I was crazy until 2001, and then I was still ignored). Eventually, doctor gave me Tramadol and that was it. I lived on ever increasing doses of Tramadol, then added Aleve, Ibuprofen, Tylenol, and Robaxin to the mix. Enough pain meds that I was able to ride/train 2-4 horses a day, while taking care of 23 acre farm, 2 kids (3 if you count my hubby), etc. Finally, by 2006 I could no longer hold the reins on x-c, and after multiple MRIs of hands and feet, diagnosed with fibro-related acute tendonitis of both hands and feet. Told to quit riding and see someone to get off the pain meds and get some proper meds for fibro.
Ever the pain-in-the-ass, I delayed and took more pain meds (did get on the 6-9 month wait to get in to even see a Rheumatologist, however). My husband talked me into going to have Reiki done (after our cowboy-type neighbor told him how much she helped his back…my husband is a vet, and so for him to recommend anything alternative is a hint of how bad I was…). Shockingly, after about a month, I started to feel sick when I took some of my pain meds, and started cutting back. Felt OK. After about 6 months, I was down to Tramadol to help with pain to sleep and one in morning to start moving. After 9 months, no pain meds (had cancelled Rheumatologist appointment by this time). Still had horrible fog and flare ups, but everyday life was so much better, and able to start riding more often again.
Still, the fogs were always my worst symptom, and they were getting worse. Couldn’t get anything done, hubby getting pissed about eating at 8 pm (knew I had to start supper, but would sit down and then realize that I missed an hour somewhere and was running late, then in a panic…). Went to my nurse practitioner, who had been in a clinic previously that dealt with a lot of fibro patients. I told her exactly how I’d been managing the fibro issues (Reiki, and, by now, Manual Lymphatic Drainage too, which also seemed to help muscle flexibility), but that the fog was very debilitating and depressing. She asked if I would try a low dose of an ADHD medication, as she had noticed with earlier obese fibro patients that some of them, when prescribed a stimulant to increase energy, had a dramatic improvement in their fibro symptoms (she searched for research on this, but never found any). So, she prescribed a low dose of Vyvanse (typically prescribed for children…I was comfortable with it because my son is on it for ADD). OMG…absolutely amazing. It doesn’t make me hyper, but when I have to do something…I can get it done! I experimented over Christmas and took 4 days off of it…and was horrified by how I felt when the fog closed in again. I woke up, sat in the chair in my room, and just felt comatose (very dramatic difference). I’m not perfect by any means, but, it’s such an improvement. I’ve only been taking it about a month now, but the primary side effects were mild (lack of appetite, esp at lunch, slight dry mouth right after taking it) and seem to be going away. I sleep fine, and although I’m now more sore from doing more stuff, it’s just helping me focus through the fog…no instead of thinking I need to make a list of what needs to be done…I make the list. Instead of walking past the stalls and thinking that I’ll do them later…I just clean them and get it done.
To top it all off, I went to my last Reiki session without telling her about the new med. She knew that I had fibro when I started there because all fibro patients have a “buzz” or “fuzziness” to their energy, as if everything is a little off and dirty. This last session, about 5 minutes into it she asked me what I had done, because things were so clean…I told her about the med and she said my brain function seemed so much healthier on it and that I needed to stay on it (and this is something as she is very anti-medication).
Don’t know if this is useful to anyone, but it’s my extremely unorthodox approach to my fibro. I now feel as if my life is relatively normal…and considering that 1.5 years ago I needed help to get out of bed, could barely walk in the morning, was always exhausted, despaired of ever riding/competing again, and lived on painkillers and muscle relaxants…
Chris
The snow is well up past knees and hocks though, on the way to bellies. I might try handwalking someone to make a ‘path’… see how bad the drifts are…
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