It’s been a while since I whined about the stupid things my body is doing, and I just had a recent visit with a rheumatologist that answered some questions for me, so I figured an update was in order. I’m still waiting for the results of some x-rays, and I might end up with a spinal MRI soon (I’ll know definitively after I have an appointment with a Pain Management Center), but I’d say I’m 90% sure what’s going on.
So here I go again, as I’ve done many times in the almost year since my breast cancer scare started this whole health ball rolling, talking about all my aches and pains, whilst complaining a fair amount in the process.
First up, a quick rundown of all the stuff going on (as detailed in my post last month, Small step in front of the camera, big step out of my comfort zone (which also has a short video that shows what my body is doing) –
- Pain, especially from the waist down.
- Difficulty walking – on a good day, I walk like Herman Munster, with short heavy steps. On a bad day, it hurts so much I almost can’t walk, because of the weakness in my legs, and pain in my heels, ankles, and hips.
- The shaking on my right side (leg and arm) has spread to my whole body. Sometimes, I hardly shake at all, but most of the time, as I’ve mentioned before, I look like my parents were Joe and Elaine.
- Did I mention pain?
- A somewhat frequent reverse hiccup kind of thing – my diaphragm spasms, and I huff air out. It’s also making me do a bowing kind of thing (to which hubby always says, “I know I’m your lord and master, but you really don’t have to keep bowing to me.” BRAT!).
- Occasional chest pain and pressure that hurts all the way through to my back (and if I hadn’t already had a bazillion heart tests, I’d head to the E.R. thinking it was a heart attack).
- Frequent cramps in my fingers, toes, and legs, sometimes with added pins & needles in my fingers and toes. My thumbs also keep getting hurt when doing the most mundane of things (typing, washing dishes), to the point that I need to splint/wrap them. Oh, and my arms and legs sometimes lose their strength at random times.
- I’ve forever been a bit foggy headed and had a hard time focusing, but now there are days that I try to function and my thoughts turn into quicksilver and disappear.
- Still having moments of vertigo and bad balance, especially when I lay on my right side
New symptoms in the past month or so:
- My spine feels likes it’s swollen. Not continuously, but there’s been a half dozen times in the past two months I’ve woken up to the feeling, and it’s persisted for the day (and sometimes two). When it happens, the skin on my back also feels hypersensitive.
- Both shoulders ache to the point that it’s hard to lift my arms. It used to just be my right shoulder, and only occasionally, but now it’s both almost all the time.
- I’ve developed sleep apnea. My family tells me I now snore louder than my husband, I don’t feel rested in the morning, and my mouth is dry when I wake up. I’ve also woken up a few times in the middle of the night, feeling like I’d forgotten how to breath.
Yes, dear readers – I know exactly what you’re thinking right now..
So again, as I mentioned in my previous post, my primary care practitioner sent me to a rheumatologist, but instead of going to someone local, she had me go back down to the Lahey Clinic. Her reason was (which was both terrifying and reassuring) something to the effect of, “if I send you to anyone around here, they’re just going to say it’s obviously Fibromyalgia, and treat it as such. On the off chance it’s something different, I want you to be seen by a team who will explore all the possibilities.”
Turns out her instincts were spot on, because the rheumatologist (who was AMAZING, and not just because she dashed out of the room as soon as I started crying, to get me a fresh box of tissues) said I had more than one issue going on.
No big surprise, given there’s a family history, but she confirmed that I have Fibro. What does that mean? I found this video that explains it better than I could –
This was mentioned by a couple of doctors before, but now it’s official – my perpetual motion is caused by Essential Tremors. Again, here’s a video that spells out what that means –
While I’m still waiting to hear the official word after my x-rays, the doctor was pretty confident that I have two spots of osteoarthritis in my spine – one at the base of my neck (which is affecting my arms) and one at the base of my spine (affecting my legs). She said this would be the reason why I’m having such pain and weakness in my extremities. I also have bone spurs on both thumbs, which is why they’ve been particularly ridiculous lately.
Granted, I need to set up an appointment with a sleep clinic to have this officially diagnosed (and she gave me a referral for one), but she agreed that it sounds like I’m having breathing issues overnight consistent with sleep apnea. What exactly is it? Here’s a definition from the website, The American Sleep Apnea Association
The Greek word “apnea” literally means “without breath.” Sleep apnea is an involuntary cessation of breathing that occurs while the patient is asleep. There are three types of sleep apnea: obstructive, central, and mixed. Of the three, obstructive sleep apnea, often called OSA for short, is the most common. Despite the difference in the root cause of each type, in all three, people with untreated sleep apnea stop breathing repeatedly during their sleep, sometimes hundreds of times during the night and often for a minute or longer. In most cases the sleeper is unaware of these breath stoppages because they don’t trigger a full awakening. Left untreated, sleep apnea can have serious and life-shortening consequences: high blood pressure, heart disease, stroke, automobile accidents caused by falling asleep at the wheel, diabetes, depression, and other ailments.
How do I feel about finally mostly having a diagnosis?
In all seriousness, it’s not all doom and gloomy. I also discovered at the appointment I’d lost at least 7 pounds since my last doctor’s visit the month prior, and since I hadn’t been trying, it tells me the weight gain (over 40lbs/3stone) from the Zoloft is finally reversing. And like I said at the beginning of this post, the rheumatologist is also referring me to a Pain Management Center (and she cryptically added that the specialist she was sending me to might want to do an additional MRI on my spine, but then she changed the subject), so I can figure out how to get my owies to be less… owie.
That’s all for now, folks! In my next health related post, I’ll talk about the things I’m doing to manage all this stuff, beyond my usual vitamins C, CH, and V (coffee, chocolate, and vodka). Until then, I think it’s safe to say…
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I’m glad things are starting to make sense at last, even if it’s not stuff you particularly want to have to deal with.
A friend of mine has sleep apnoea and he’s now an expert on sleep, so you could go that way if you wanted.
Thanks April, and that’s pretty much how I’m feeling about it. And excellent point.
Girl. Ugh. Well, I’m glad you’re getting some answers, but I wish the were answers like, “Oh, a troll moved into your appendix. So we just need to evict him and his pet armadillo and you’ll be good to go.”
Also, I work for an acupuncturist, and when I told him I had fibro he scoffed and said, “That doesn’t exist. It’s adrenal fatigue.” So I mentioned adrenal fatigue to my physician who scoffed and said, “Adrenal fatigue doesn’t exist.” So apparently I have a couple “imaginery” ailments. Awesome. Thanks, guys. Can you just fix it?
Yep, that’s totally what I was hoping for. Although I probably would’ve let the armadillo stay.
And, ugh. I’ve had a couple of comments from other docs suggesting that maybe if I had a prescription that got my “emotions under control” I might find that everything else would improve. Less judgy, more fixy, please and thank you.
So much going on with your poor body, Traci. I’m glad you’re getting answers, and treated well. I expect more answers are in store, or at least greater depth and refinement to what you’ve been told. Know that I hold you in my thoughts and prayers that the Lady will ease your pain and problems. Blessings, dear friend. ❤️
Thank you so much, Beth Your friendship and support are part of the reason I haven’t completely lost my brain by now. Blessings to you in return, dear friend. ❤️
Sorry for your health problems but glad you are finally getting some answers. Get better soon.
My friend was bedridden with symptoms like these and had same diagnosis. This is a few years past and it is totally under control. I know your circumstance might be different but I thought you would like to know a good story about the condition!
Stay well x
I think getting a diagnosis feels like you’re half way there to feeling better. At least now, we know what’s wrong and the process of alleviating pain etc is SO much easier once you know what you’re dealing with. Much love to you and C, CH & V Xxx