This is a post to let everyone know I am going through a health crisis at the moment. It has disrupted my life greatly and has caused me significant pain and suffering, both mentally and physically. If you’re a long-time reader, you might remember all the health stuff I went through from April 2019 through March 2020. Well this is similar to that but on steroids. It also started in April like last time and then just intensified from there.
Perimenopause is the suspected culprit, but so far hormone replacement therapy (which I started at the end of June) hasn’t “fixed” me. It did help with some out of this world anxiety, body shakes, paranoia, nausea, and ear stuff, but I’ve since developed nerve pain that started in my arms and legs and now include my feet, hands, and various other parts of my body. Sometimes they burn, or tingle, or have a crawling sensation. I’ve had to start taking Gabapentin just to get any sleep at night and I don’t like it. I am taking the least amount possible but I feel off kilter, get dizzy if I stand up too fast, and my ears are starting to be sensitive again, but I’m not sure if that’s from the drug or whatever is causing all this nerve stuff to begin with. It’s been incredibly scary and I wish it would go away. I really hate taking medication and avoid it at all costs but I’ve tried a bunch of different sleep aids prior to the gabapentin because I had completely sleepless nights thanks to the pain. Even with the Gaba I only get 5-6 hours most nights.
I finally saw a neurologist last week who sent me for blood work and tested my reflexes. He doesn’t believe I have actual nerve damage since I can still sense things, including temperature, so we’re looking at thyroid, autoimmune, and possible vitamin deficiencies. He doesn’t think it’s MS or small fiber neuropathy, so I guess that’s good. I don’t think he likes me very much, though. I could tell I was annoying him by asking so many questions. He seemed so nice ten years ago when I saw him about my cold hands and feet, but back then the stakes weren’t as high so I guess I wasn’t as frantic as I was this time around. I came to the appointment with a bunch of health history documented as well as possible causes for my issues. I probably came across as a know-it-all but I simply wanted to be thorough and maximize the time we had. It’s not cheap to see doctors on our high deductible health plan (although the premiums are much lower, so normally it would balance out if you weren’t having major health issues like I am).
I was taking Emergen-C, which has a bunch of vitamins, when all my issues started. I’ve since read that too much B6 can cause toxicity, and there was 10 mg of it in there and I had been taking it on and off for the past five years, and daily for the past 16 months. A lot of my symptoms line up with that, but with my hormones going wonky, it’s hard to pinpoint the true cause of what’s happening to me (and maybe it’s a combination of things). I quit the supplement the second I read about the B6 stuff which was on June 29th, but I didn’t quit drinking a Body Armor electrolyte drink until two weeks later because I didn’t realize they add B6 to that too (as well as most breakfast cereals). I couldn’t persuade my PCP to test my B6 when I saw her about the burning sensations, so by the time I figured out there was a test through Quest that I could pay for out of pocket, I had been off the supplement so long my levels were in the normal range. So now I don’t know if they were abnormal before or not because B6 will leave the bloodstream fairly quickly, but it can get stored in muscles and nerves and cause issues for awhile. It’s the one B vitamin that isn’t truly water soluble. So IF that is my true issue, I won’t feel better for awhile as it can take anywhere from 6 months to well over a year for the nerves to recover.
If this is all hormone related, who knows when it will calm down. I never even knew all the stuff I’ve experienced over the past four months was even possible! As I type this, my lips are burning. I see a lot of perimenopausal women complain of low libido, hot flashes, joint pain, and insomnia, but not as much of what I’ve been dealing with, although there are a few. I guess I’m just “lucky” that I’m getting so many weird and extreme symptoms.
I just hope it’s not autoimmune because that sounds worse than the other possibilities as those will likely improve whereas autoimmune might not. I’ve joked in the past with my best friend that sometimes I think I have Fibromyalgia, but I called it Fibro Light since my issues would be rather mild and go away for years at a time, if not indefinitely, but now it’s not so “funny”. I’ve had so many little things crop up here and there, and even bigger things like Interstitial Cystitis that bothered me for a long time but then just stopped and I never even adhered to the special diet for IC. I guess that’s encouraging that this nerve stuff will also go away in time, but when? It’s the most painful thing I’ve ever had to endure.
My neurologist doesn’t think I even have Fibro, though he did think hormones could be playing a large part. It’s just weird that the issues got worse instead of better by getting onto hormone therapy. So that makes me wonder what’s really going on. Maybe that points more to B6 issues? I read the symptoms can get worse before they get better and I’m only two months into stopping the supplements so I don’t know.
I hope it’s just a vitamin deficiency that I can treat. I bought a DNA test awhile back and I have the MTHFR mutation which makes processing B vitamins harder, so maybe that’s why I’ve had nightly pains that would crop up for a week or two at a time over the years even though I was taking vitamins, and now that I stopped, things are even worse. Low B1, B6, and B12 can cause nerve issues and hormone changes can make those things low even if you’re eating lots of foods with them and taking vitamins. Paradoxically, B6 is a tricky one because too little can cause nerve issues but so can too much.
Strangely enough, since this all started my migraines stopped (and I had one every week back in February) and my acid reflux has pretty much gone away (probably because I cut out all added sugars and minimize carbs and spicy foods). Something similar happened last time I was ill as well. I’ve also lost a lot of weight like last time. First because I was so nauseated I had no desire to eat and now because it’s much harder to get enough calories when you’re avoiding added sugar and high histamine foods like avocados which are full of fat and I love (and I have been having a bit here and there because I’m not fully convinced histamine is a driver of my issues but much like with the other things I don’t know for sure). I guess it’s good I was a little overweight (somewhere around 140+ lbs) when this began since now I’m under 120 lbs.
Some days I can push through the symptoms and do normal things around the house and even go out like last weekend when we went birding (but didn’t see any actual birds, which was frustrating), but other days I sit in my bed or on the couch and feel so scared and depressed. I cry… a lot. I want my life back! We had plans for this spring which included lots of birding since that’s migration season, and then afterwards we were going to adopt a dog because we finally felt ready for one, and then this happens. I hate the uncertainty of all this. If I at least knew how long it would be until I felt better it might be easier to cope, but with ever-changing symptoms and some things getting worse instead of better, I am seeing the world in a different light and I don’t like how this whole experience has changed me.
If/when I get better I am going to be so damn grateful. It’s stuff like this that makes me wish I could believe in a higher power. I just have my doubts because would God really let people suffer like they do? I will admit, I’ve prayed to him anyway just in case. Which makes me sound like an asshole – I don’t fully believe in God but now that I am suffering I will ask for help anyway. Oh well, it is what it is I suppose. I don’t know what else to do. I try to live my life in a way where I treat people well, even if sometimes they don’t necessarily deserve it, and I thought I had earned a lot of good karma for that, but now I’m wondering if it was just luck and there is no such thing as karma, because I will tell you one thing – I absolutely know I don’t deserve what’s happening to me right now. And it’s really hard not to feel bitter about that, especially watching people my age breeze through life, going out and enjoying themselves while I sit here in pain unsure of the cause or whether it will ever go away. It’s really tough.
This experience makes me feel so old and I’m only 49. Had you asked me how old I felt back in February I would have said I didn’t. I had no pain at all (other than the migraines)! I was exercising daily, eating ok (not great, but not terribly either), had added stuff into my daily regime to keep me healthy – working on my balance, doing crunches throughout the day, and making sure I wouldn’t develop insulin resistance by doing little things like making rice ahead of time and letting it cool to reheat later which helps reduce blood sugar spikes. Physically and mentally I felt great! I want to get back to that. I really really really hope I do. I don’t want to live the next how many years feeling awful all day every day. That’s no life. I’ve already lost interest and joy in most things due to this. We’ve been saving money for years, building up our nest egg for retirement, but without health it’s all meaningless. I mean, sure, it’s great that I can pay for healthcare without going into debt, but I want to enjoy life, and right now I’m just getting by in survival mode.
If you read this far, please keep me in your thoughts and prayers. My mom is very religious so she’s been praying and she called one day to check in on me and when I said I was no better she said “damn, I guess God and I aren’t as tight as I thought” and that was pretty funny. Oh, and speaking of her, she got a hysterectomy and her panic attacks went away. She never needed to take hormones and had no other issues from what she’s told me and this is the woman who has every other sensitivity in the book, so how I ended up in this mess I will never know. Maybe it’s all childhood trauma and anxiety driving this to be worse than it would otherwise be. I just wish I knew how to fix it.
P.S. I should mention how thankful I am for Joe – he has dealt with my crazy mood swings and stepped up to do all the grocery shopping, and 99% of the cooking and dish cleaning since I’ve felt too ill to do it. He also drives me everywhere since I don’t feel well enough to drive right now.
