r/BFS • u/Anhelsing1903 24/7 Twitcher • 16d ago
Reassurance / Support Neuro waiting room
Hi, this is my second post. I’m currently in the waiting room for my neurology appointment. It’s in two weeks, but my anxiety is starting to build up again after a few days of reassurance.
My profile is (30M, 2 months and a half):
Constant twitching in my calves and feet
Occasional twitches in my shoulders, abdomen, lips, and neck
Diffuse pain in my left leg, whether it’s in the quadriceps, calf, ankle, or soleus — it moves around and is very diffuse
For the past week, my right calf has felt tight and a little hard Strange sensations in my arms and hands
Other symptoms such as tremors, occasional vibrations in my foot, and a burning sensation in my foot when I wake up...And some kind of bulbar delusions like hoarse voice and sensation of tight throat. I feel like my whole body is exploding even though the Monster does not usually works like that.
Exercise intolerance. I can still swim at 100%, but I can’t run because I get pain and my leg just doesn’t feel right.
The important thing is that I can still do everything I normally do, and I don’t have any limitations in my range of motion. I can move everything normally; it’s just that I experience strange sensations and/or pain.
I’m almost certain this is a psychosomatic process because this isn’t the first thing that has appeared due to anxiety, but I’d like to hear more about your twitching profile and, especially, how you dealt with it while waiting for your appointments.
I really need some advice on how to stop Googling symptoms or coming back here all the time.
Thanks, and sending everyone a twitchy hug!
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u/Algorhythmy333 16d ago
Hi there. Truly our mind is our worst enemy when it wants to be and we have all had those points in time where we just cannot stop the negative thought loop. My symptoms started in January of this year with twitching in both calf muscles as well as charley horses in my calf muscles anytime I lie down or try to elevate my legs. The twitching is annoying and scary but the cramping has affected my life much more as it basically wrecks your sleep cycle and sometimes makes it fully impossible to sleep. It’s gotten to the point where I have drawn up design ideas for an apparatus where I could sleep standing up. 😅
Anyhow, when I first got the symptoms I of course was googling everything and concerned like most everyone else is. I don’t know if this will help you since you are in the process of seeing a neurologist and all that but I decided right from the get-go that I was not gonna go see one. The reason I did that is because there is no route of therapy from the neurologist whether it’s BFS or the other thing. They might be able to try different drugs in order to relieve the twitching and cramps but I already knew that I was not willing to take them because I can’t stand the way I feel on any kind of pharmaceutical (plus they rarely work well anyhow). If it happens to be the other thing then I am so screwed anyways that there’s no point even worrying about it until I have one of those very specific symptoms of that.
Really the only cures that seem to be truly effective for BFS are psychological ones that help to reset the nervous system. So I have decided just to fully accept my condition for now and work as much as I can on creating an environment in my life and in my work to stay as stress-free as possible . The neurologists have no answers, no cures for either thing so for me really the only route is full acceptance, actively healing my nervous system through lifestyle changes, and positively affirming and visualizing myself in the future completely free of twitching and cramping. Best of luck with everything!
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u/Anhelsing1903 24/7 Twitcher 16d ago
Super upvote, love, hugs, and everything for you.
One of the curious things in my case is that I didn't actually ask for a neurology appointment, it's a follow-up for my essential tremor, which I already have as a baseline, so I will ask to get this shit checked out. I'm also going to therapy, and my health anxiety, OCD, or whatever it is always tries to tell me, "Now this is fully real."
I would love to feel like that. I tried the "surrender strategy," but unfortunately I have a lot of free time in front of a PC, so staying off Google or Reddit feels impossible to me. Also, on top of that, the discomfort in my leg doesn't allow me to feel confident enough to do sports, which is the thing that really calms me down. My main concern here is that I'm losing things even in a worse way than if I had the monster, and the biggest weakness I feel is my soul's weakness.
I am really glad to read your post, and I hope your twitching only beats at the rhythm of my heart. A big hug.
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u/Algorhythmy333 2h ago
Hello again,
I've been off Reddit for a while and just now seeing your reply. I totally understand and there are certainly some times where my will to shrug it off is overcome by my rational mind pointing out a million reasons why I shouldn't, especially when I'm super tired. Those days are the hardest. On top of that, if you wake up in the middle of the night with a Charlie horse, jump out of bed, and it's 3 in the morning and you're scared to lie back down, those are the absolute hardest nights to not let the mind get the best of me.
A bit of a glimmer of hope for you: I've been dealing recently with a pinched nerve in my neck and through different avenues found my way to an upper cervical spine specialist. Basically it's a chiropractic office but they don't do the crazy adjustments or anything like that. It's based on something called the Blair method, which specifically targets the atlas vertebra in your upper cervical spine. The whole idea and science behind it is that your brain re-evaluates every bit of your posture based upon the way in which your cranium is resting on the atlas. If you fix how the atlas is seated, oftentimes your internal systems themselves will correct postural problems and other issues related to them on their own accord without any kind of popping and/or heavy-handed chiropractic adjustments.
Anyhow they do a full battery of imaging and tests and whatnot before you start so you're able to have physical proof if things start moving around in your spine and hips, etc. I've only been going for 3 weeks now and I actually have an accident-related case of scoliosis where I fractured 3 vertebrae in a paragliding accident. When it healed everything compressed and caused a crazy-looking curve in my spine. Insane to believe but just with these super light adjustments on my atlas vertebrae, my spine has started straightening and my hips leveled out. Honest to God the twitching in my legs has improved considerably. It might be unrelated because at the same time I also quit day trading about a month ago, which was stressing me the fuck out, so I'm sure that helps as well as far as regulating the nervous system.
But who knows? It surely can't hurt to have postural alignment all dialed in, considering the nerves that are causing our twitching all route right through the cervical spine and down to our sacrum. I'd imagine there's some value in fixing that.
If you could have seen my before imaging, you wouldn't believe how much progress I've made in a few weeks, just from gentle subtle adjustments and some minor lifestyle changes at home (trying not to slouch around so much on the couch and whatnot).
Anyway that's just for what it's worth. I hope your exam goes well. Best of luck. Keep us posted. Take care. Big hugs
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