HoofyHorse
New member
Hi all,I've been a lurker for some time now since I started twitching pretty severely around April. I appreciate this forum a lot but I knew that I needed to go through the same journey that a lot of you have before I would accept that this isn't something that's going to kill me. I finally got an EMG done yesterday, after 4 months of waiting for other tests. I'm in Norway, and while the health care is free, there's at least month-long waiting lists for every possible test or specialist unless you walk in with your arm hanging by a thread (something I have considered doing just to get a proper health check faster!). I wanted to share my experience and symptoms so far in case some other people here can relate, I think it would be great for me to talk to some other people who have a similar struggle. It's kind of a long story but I'm really hoping that someone will read it and relate, so please reply if you do! My current symptoms are at the bottom...A little before Easter of this year I started to get severely fatigued from my bike rides to and from work. I was in pretty good shape when it started, probably the best shape I've ever been in, because I road biked around 100 miles every week. I started to get severe cramps and soreness in weird areas and ended up having to tone down my biking a lot, and I started jogging instead because I thought maybe I was getting burnt out. Some time passed and I continued to feel more and more fatigue, I went on a vacation to San Diego and struggled to do things that I usually enjoyed. I tried to surf a bit and could barely push myself up on my board, and would be so exhausted afterwards that I would lie down and fall right to sleep. It was around then that I started to wake up at night with the weirdest buzzing/crawling sensations. It felt like my whole body was vibrating, in my head and in my legs especially. It took me a while to figure out that I actually WAS vibrating, or twitching at least. I looked down at my legs and it looked like worms were crawling around, and my feet felt alive with electricity and twitched like crazy. Another thing that started happening was that my limbs, back, and even inner thighs/butt would go completely numb while I slept or sat too long in a chair, or rested my back against any hard surface really.Fast forward a couple of months and a couple of doctors visits (I was in the US at this time, my doctor did blood tests and said I was fine) and I had a big stressful move with my girlfriend. We moved across the US for her new job, I left my job and was going to take my time finding something new, but during the move I really started to struggle. I started to get a lot of panic attacks, felt extremely tired, was completely struggling to find energy to both finish my work in good standing and my muscles just didn't seem to be cooperating when it came to packing and carrying things. We eventually got moved, and I was in an unfamiliar city across the country with no health insurance, feeling completely overwhelmed with my symptoms and not understanding them in the slightest, and I totally crashed. I started to look up things online about what the twitching could mean (and found out the worst case scenarios), and I worked myself into a frenzy basically, and have never been in a darker mental place. My girlfriend had no idea what to do with me and also had her own stress with a new job as well as finishing up her PhD, so my situation was completely overwhelming for her.I was due to visit my parents/family in Norway in August so I decided to change my flight and headed there in late July. I'm half Norwegian so I knew I would be able to see doctors there. I went immediately to the emergency room when I got there, where they checked me to see if I had been having a heart attack or heart issues. They released me the same day saying I should go to a doctor since there was no sign that I was dying or any medical sign that something was wrong. My doctor did a whole bunch of blood tests, I ended up getting sent to the hospital where they did a cardiac stress test, but then they sent me home saying they didn't know what to do with me and I was fine. Back to the doctor again, this time I got referred for an ultrasound. Waited over a month for that, which was totally fine. Back to the doctor again, and was sent for an MRI of my head, which was also fine. Finally yesterday I spoke with a neurologist who lives close by, and he arranged for me to see a muscle specialist. Had an EMG the same day after showing him videos of my twitching, but the EMG was totally clear as well (other than some fasciculations). Basically they told me it was probably psychological and I should consider a high dose of an antidepressant. So that is where I'm at right now, I'm still in Norway because I'm still basically a physical wreck and I don't want to go back to the US and overwhelm my girlfriend with all of this. I feel like I've come a long way mentally, I'm no longer anxious, but I do obsess over my symptoms and get frustrated by my lack of progress. I do physical therapy 3 times a week, try to jog as much as possible, and do work for my uncle outside when I feel up to it. I was prescribed a beta-blocker yesterday by the neurologist (Inderal Retard/propranolol hydrochloride 80MG 1x/day), who thought maybe if I could stop my migraines that some of these symptoms might also improve, and I take 37.5 mg of Effexor daily (I was taking 75 mg but I went down to 37.5 mg and was planning on removing it completely soon, since I haven't found it helpful). I have not been diagnosed with anything other than anxiety, doctors here have never heard of BFS. My worst symptoms are: 1. lots of muscle fasciculations that NEVER stop which have spread upwards from my legs, and now I basically twitch everywhere including my face, triceps, stomach, neck, back of head. 2. My extremities fall asleep at the drop of a hat, especially my pinky and ring fingers while I sleep, and my back when I sit in a chair. 3. I have vision problems, I have a lot of lights in my vision and cannot tolerate patterns (they look electric or alive). I also get afterimages for a very long time and when I read I see an extra line of text in white. 4. Really severe tinnitus, similar to the ringing in your ears that you get after a loud concert, but it never goes away. I also get attacks where the tinnitus suddenly gets louder in one ear, probably once or twice a day. 5. My muscles are extremely stiff and sore and I get a lot of pain in them after exercise. If I work out a muscle group it takes 3 or more days to recover. My legs are always stiff.6. I sweat like crazy from light exercise, it pours off me like a faucet.7. Frequent urination (water goes right through me, I wake up multiple times at night to pee)8. I feel like I'm not building muscle despite working out 3 times a week.9. Exercise intolerance.10. Chills and skin sensitivity. I get crazy chills from anything, even watching a movie that's a bit exciting, it's like my body is reacting completely wrong to things. I also get really cold, I feel like I'm always cold.11. My pulse is crazy strong and I feel it everywhere. I can actually see my pulse in my neck, wrists, ankles, stomach, and tops of my hands. It's like that feeling you get when you hit your finger with a hammer and it starts to throb. I also 12. Muscle ratcheting at the gym - my muscles shake, it's almost like a reflex and when I start to shake I can't really stop it. Also when I lift my heel off the ground and lower it again, it shakes, this happens other places. When my muscles are tired I shake like crazy, it feels like a muscle or nerve all the way from my legs to my neck starts to shake and I can't stop it until I relax the muscle.13. A lot of lower back pain when I walk or stand too long. Anyway, this ended up being super long and kind of a crazy post, so I'll save my questions for another post perhaps. I am very interested in meeting people that share a similar experience to me, though, because I still am having a lot of trouble accepting and being optimistic that all of this can get better! -Bear
