It’s been almost six months since my last “how I’m doing” update. The short answer, which I guess you already know from the title of this post, is I’m stalled.
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My longtime readers know I started working remotely with fibromyalgia specialist Dr. Rodger Murphree in August. As part of his six-month program, he overhauled my supplement regime and put me on an anti-inflammatory diet. (I wrote about my supplement and diet changes in my last update here.)
I’ve made good progress since then:
- I lost 45 pounds! – Thanks to the anti-inflammatory diet, I’ve dropped all of the weight that I gained while taking Lyrica and Amitriptyline after I was first diagnosed. It took six months, and it wasn’t easy, but I definitely feel better not lugging around that extra weight. Big win!
- My sleep is greatly improved – Six months ago, I was waking up about every two hours and having difficulty getting back to sleep. Dr. Murphree recommended a higher dose of melatonin, and my urologist prescribed a new medication to calm my overactive bladder. Between those two changes, I only get up about once a night now. I still have difficulty getting back to sleep sometimes, but it’s less frequent than it was.
- My energy/mood is better overall – The turning point was adding SAMe, 5-HTP and DLPA to my supplement regime. This combo has been a life changer for me! It’s improved my mood and energy levels, so that I’m mentally better able to handle life with fibromyalgia. (FYI: These supplements aren’t recommended for prescription antidepressant users because they affect serotonin and dopamine levels.)
- My digestive issues are better, too – I no longer use Nexium to control acid reflux, and I’m not eating Tums like candy. Instead I take digestive enzymes with each meal to naturally balance my stomach acid. I’m sure the changes in my diet also helped. I have much less bloating, gas and overall digestive issues than I did when I started the anti-inflammatory diet.
I am forever grateful to Dr. Murphree for helping me to make these improvements. He took me from a place where I was considering applying for disability benefits to someone who is more functional.
But now I’m stuck …I still have quite a bit of pain. Throughout the fall months into December, my pain levels were improving. Going gluten free and cutting other bad stuff out of my diet really seemed to make a difference. I was in bed one evening in December when I realized my legs weren’t hurting! It was the first time in years that they weren’t in pain. You can’t imagine how excited I was by that! It gave me hope that a recovery was possible.
And then came January. My pain returned in force. We’d had a mild December with some days reaching 70 degrees here. In January, the thermometer plummeted, and it’s been pretty cool ever since. I’ve wracked my brain trying to figure out what changed, and the only thing I can figure is my pain increased with the change in the weather. I really, really hope my pain levels aren’t tied to the weather because I can’t do a damned thing about how cold it gets (other than move to another state, and that’s not an option right now), but at this point, that’s the only explanation I have.
Nothing has taken the pain away. Not hemp CBD oil, which helped in the past. Not Tramadol. Not eliminating more foods from my diet. Not tweaking my supplements. Nothing. It doesn’t matter what I do. It … just … won’t … stop.
And then, I recently found out my nasty case of plantar fasciitis isn’t plantar fasciitis after all. Turns out, I was misdiagnosed by my first podiatrist. My second-opinion podiatrist is having me evaluated for peripheral neuropathy, a common co-morbidity in fibromyalgia. What initially started as pain in my feet has now evolved into pain, numbness, tingling and burning. It’s miserable, and my feet hurt constantly. And needless to say, it’s affecting my ability to do even basic things like grocery shopping or cleaning.
It hasn’t been a good three months, but I’m not deterred. If my weather theory is correct, then my pain should subside once the warmer spring temperatures finally set in. I’m hopeful – even though it will mean that I’m fighting a force of nature that’s out of my control.
In the meantime, I’ve given some thought to what, if anything, I can do to break out of this stall and further reduce my symptoms. Here’s my plan:
- I’ve started walking. I’m still trying to get into a routine, and I can’t go anywhere near the pace that I did when I was healthy. It’s also painful – especially because of my feet. But I’m committed to establishing a walking routine because exercise is supposed to help over the long term, according to the latest fibromyalgia research.
- I’ve gone back on low-dose naltrexone. I stopped taking LDN last August when I started working with Dr. Murphree. At the time, it didn’t seem to be working as well as it had in the past, and I decided to stop taking it. Since then, I’ve learned that some patients experience greater pain relief at higher doses (up to 9 mg). I’m currently taking 4 mg and will increase my dosage over the coming weeks to see if it will relieve the pain.
- I’m also giving serious consideration to applying for my medical marijuana license. I haven’t done that so far because it’s expensive and out of respect for my husband who is against the use of marijuana. But I’ve explained to him there are CBD-rich marijuana strains that will not turn me into a pothead, and he is more open to the idea now. I’m lucky I live in Delaware where medical marijuana is legal, and there’s a dispensary about 30 minutes from me.
- I also think I need to address my mental/emotional health. I always feel kind of wired and revved up (even when there’s nothing stressing me out), and I’m sure this affects my symptoms. I used to have a daily meditation/yoga practice, but gave that up when we moved to our new home, and I lost my practice space. I think it would be good to reestablish a daily practice to help manage my stress levels because we all know that stress aggravates fibro symptoms.
So that’s my plan as it stands today. I will never stop looking for ways to reduce my symptoms. I believe making small changes over time will eventually lead to big results. For me, it is an evolving path.
Has anything helped your symptoms? Please share in the comments!