I just need a place to vent about my symptoms. I may be answering my own questions, but need to post. About eight years ago, I had my first bout with neurological problems. I have lifted weights consistently since I was 18 (now 48). My initial symptoms at that time came on all at once – after one workout, my thighs began twitching uncontrollably as I lay in bed that night. It was terrifying. And I felt horrible. I soon began having symptoms elsewhere – a numbness on the left side of my face that sent me from work straight to my doc to see if I had had a stroke (nope) and then numbness down my left arm. I also experienced a very strange “hollow” feeling in my legs and hands. They felt empty, like they had no weight to them. I convinced myself of ALS and thought about my death that would soon happen. I had a terrible depression. I kept my job, but barely. I went through three EMGs (normal) and a spinal tap (normal). I did get a BFS diagnosis at that time. I did not lift for a year.Over time, the symptoms subsided, although I have had twitching throughout my body since then, more often in my legs. I eventually started to workout again (after one year), hike in the mountains again, etc. I have been working out steadily since then, except for about a month off for hernia surgery in the spring of 2012 (caused by too much heavy lifting). Put muscular bodyweight back on over time and feeling good. I recently achieved some of my best lifts since that time 8 years ago and just a week ago Sunday squatted 300 pounds for six reps and benched my bodyweight ten times. Not bad for 48. I also added walking with a pack to my workouts as I am supposed to go to Colorado in less than a month. My legs and entire body were getting a lot of physical work. I was feeling good, but I seem to have completely overtaxed my nervous system and brought on a second attack. I felt good just a couple of weeks ago. But now I feel like crap. My condition changed very quickly. I had a terrible ache in my legs after being on them even for a short time, although it has lessened a lot over the last couple of days. Twitches like crazy in them, too, although I would take the twitches if I could get rid of the achiness. I am very tired, fatigued. I can sleep all night and wake up feeling more fatigued than when I went to bed. My hand symptoms have returned, also. They feel hollow. If I grip something, the feeling goes away and my grip strength is still there, although my hands do feel weaker. It’s very weird. They have stiffness as well. I have pins and needles in my feet that come and go. I also have “brain fog”. I feel like things that happened recently are far in the past. I have the twitches all over now – hands, forearms, scalp, chest. And periodically a tingling, burning sensation in my mouth. I of course have been on the web all over again about ALS, sensory symptoms, etc. (yes, I know that's not the thing to do). Would this be ALS after all? I see that some people report periods of remission, but I thought once it started, that was it. That someone would not have any kind of a recovery like I did from symptoms eight years ago if it was some form of motor neuron disease. Does ALS ever resolve to where someone would get back to working out once it started? If anyone has experienced these or similar symptoms, I’d love to hear about it. I am going on the assumption this is BFS and that I will recover over time. Right now, I am afraid to lift for fear of making things worse. Thanks in advance for replies.
Vent About Symptoms?
- Thread starter TTB2865
- Start date
I see nothing in what you wrote that states you have or had clinical weakness. That is the primary symptom in the disease you fear (along with muscle wasting).After 8 years, you would be written up in medical journals if you were the one case that ended up being <you know what>.That being said, you say things that could indicate a vitamin deficiency (like B12 deficiency) - especially when you mentioned "burning mouth" and all your sensory symptoms. Have you looked at that? As you probably already know sensory symptoms point away from the dreaded disease.And, Burger's right - you have way, way overtaxed your body. I live in Colorado - you don't need to train like that to visit my state (unless you're planning on climbing about 10 fourteeners while you're here).Mitra
Thanks for all your replies. They have eased my mind a lot. I will look into the B-12 and vitamin deficiency. The rapid onset of symptoms has just knocked me for a loop. My sensory symptoms come and go, especially the mouth sensations. Been twitching all over, more than normal. Normally, it's my legs and sometimes eyelid, forearms, triceps and plenty of other places, but I just have the twitching and not the overwhelming fatigue. Have cold feet and pins and needles off and on in them a lot of the time, too. Leg ache has improved a lot, though, over the past couple of days. The fatigue is probably the worst thing right now. I can walk on toes/ball of the foot and heels just fine. My grip strength is fine, although if I spread my fingers, I have no resistance strength if you were to push my fingers together. Have had that since the first episode eight years ago. The docs thought I had issues with the nerves at the elbow since my other tests were normal. It's just that I was feeling great, strong, energetic less than two weeks ago and now don't. Yeah, I know I caused it by too much heavy weights and not enough rest and easy workouts. And yes, I have been planning on hiking my first fourteener this year (Grays Peak) and then heading to Estes Park / Rocky Mountain National Park for about six days. Still three weeks out from all that and hopefully the fatigue will improve. If anyone else has suffered from fatigue in addition to the twitching and paresthesias, especially feeling more fatigued even after a full night's sleep, I would like to know. Thanks again for your replies and all the best to all of you.
You sound like it could possibly be adrenal fatigue or maybe chronic fatigue syndrome, because you're never feeling rested. You should ask your doctor about both as well as B12 deficiencies (and Vitamin D - both which are common on this board).Kudos to you for climbing Grays. Be really, really careful, though. I don't want to sound like a Debbie Downer, but 14ers are not easy on anyone. Last time I climbed one (when I was 30 - so 14 years ago), I got altitude sickness. I was climbing Lincoln, Democrat, Bross (the same day - you go peak to peak fairly easily). I got up Mt. Lincoln and had to go back down due to a horrible headache and terrible nausea. I almost passed out. And, I have lived in Colorado almost my entire life (from elementary school on), so I was in a bit of denial that it could be altitude sickness. By the time I got back to the car with my sister, I was disoriented and confused. Once back in Denver, after a few hours I was fine.I don't mean to scare you, but don't overtax your body. A 14er is tough, especially if you're not acclimated to the altitude. Drinks tons of water, and no exaggeration there...Anyway, I'm hoping your symptoms will alleviate somewhat, and very sorry to hear you're going through a relapse. It's like BFS doesn't want to "let go" of us - even if we're feeling really healthy and strong, it can come back and bite us if we do anything wrong.Hang in there.Mitra
Thanks for the advice. I have summited 3 peaks in Rocky Mtn. Natl. Park, but no 14ers yet. Having a lots of tingling all over today and lots of twitching all over. But energy and brain fog are improving. I do remember my eyes being irritated and red when this attack started, almost like when you have the flu. My trip is in early August and I'll report back how things went. Hang in there everybody.
Just a quick modification to the "Drink tons of water" suggestion. Instead, drink tons of electrolytes. I did the tons of water thing with insane workouts, and all it did was deplete my system of minerals and sugars and salts that it desperately needed. You can enrich your water with sodium and sugars. You can drink gatorade during those intense workouts. You can squeeze lemons into your water if you want a very good electrolyte replenishment. Long gone are the days of plain water for me. Lemon water is a nice natural effective substitute. Make sure to brush your teeth though 
Just wanted to toss this out there.
Just wanted to toss this out there.JohnnyRocket
Well-known member
I'd stick with Mitra's suggestion of drinking lots of water, and not sports drinks. The occasional sports drink is okay, but loads of water is really the key for high altitude conditions, as opposed to other forms strenuous activity. I just got back from the mountain trails myself, but avoided the 14'ers. I'm sure you've got it figured out by now.
The main reason to drink water is to stay as hydrated as feasibly possible due to the altitude. I've never heard anything but water recommended, so for the hike itself, I'd stick with water (maybe gatorade beforehand or afterwards to replenish electrolytes).And be careful. Like I said, my last experience was horrible and I was in really good shape back then. Don't push yourself too hard. It is seriously not easy to breathe when you get to 10,000 feet or above, and I'm acclimated to altitude.Luckily Grays is one of the easier 14ers (I think you can do Grays and Torrey in the same day - I haven't done them, but I've heard).All that said, climbing a 14er is very rewarding and the views up on the peak are magnificent. Good luck!Mitra
Having felt bad for two weeks, I had an appointment with primary care doc yesterday (very thorough exam, passed the strength tests he gave, really listened to me) and gave blood for testing this morning. He is checking for lots of stuff. Will see him again one week from Friday. Two plus weeks after this started and I am still worn out. Legs get very tired and achy with just a little activity. Lots of twitches all over and still have the migrating paresthesias. My doc has requested my records from all the tests (emg's and spinal tap) I had during my first episode some eight or nine years ago. I feel sick. I don't have a fever and yet my girlfriend says I feel warm to the touch and my eyes are warm like I have a fever, infection or inflammation. Brain fog has lifted a bit, but I just have no energy. Pardon me for venting and thanks for listening.
Yes, I am functioning, going to work, etc. This started up July 7 after about four months of really hard workouts. Completely wiped out feeling, although today it is better somewhat. Lots of twitching all over, tingling which migrates all over. Most troubling is my aching legs. I hit my leg work hard the past four months and I am convinced I am now paying for it. I can be on my feet for just normal around the house stuff and have to sit down due to the aching. That is the symptom that scares me when I read that MND can present with that. Also, lots of hand twitches. I have no interest in the things I normally am enthused about. Brain fog which still has not lifted. I just feel sick. Hard to describe. If that and the fatigue would lift, I would feel tons better. I sense my nerves are burned out. I am not myself at all. I trust this is just BFS. It may be benign, but it doesn't mean we can't feel like crap. Right now my existence centers on doing as little physical activity as possible. I don't want to do anything else.When I finally feel up to exercising, I am going to completely rework what I do. I'll lift, but not as hard. More stretching, walking and relaxation.I hope I've answered your questions. Thanks for replying. It really helps to know others have gone through this s#*t and are better. Right now, it feels good health is a long way off.
Got lab results this morning, which were normal across the board. I have been scheduled for an EMG and nerve conduction test for mid-September (earliest I could get in) and will then see the neurologist. For the neuropathy in my feet (cold, tingling, burning sensations) my primary care doc is putting me on Cymbalta. Still having the tired legs with normal activity and while my hand strength is good, they still just don't feel right. My anxiety is off the charts. Energy level and brain fog have improved, at least. I continue to pass the strength tests. Trying to think positive, but my hands and legs have me worried. Have a twitch that moves my index finger on my left hand inward rather often, especially after activity (typing, which I can still do, or just making a fist). Still have the intermittent tingling in my mouth and if I sit still I have a tingling sensation, almost a buzzing, in my upper body and arms, and some tremor in my arms. Still heading to Colorado with my GF and her kids on Sunday, but my planned hike of Grays Peak is off. Just don't have it in me right now. Who knows whether I'll be able to hike at all this trip. Hopefully the change in scenery and being distracted will help. Having a very hard time with this. Had stuff like this 9 or so years ago, recovered, and here I am with aching legs, twitching hands that feel empty if I'm not holding something, fatigue, twitching and tingling in multiple areas. Scared of the EMG. Bit I want to know what is going on or at least tell me it's nothing bad. I know the sensory symptoms point away from NMD, but my hands and legs have me scared. Had nine years of twitches and was strong and now here I am. Thanks for listening.
Terry,Remind me - did they test your B12 levels? The tingling in your mouth makes me think of B12 deficiency.My thumb has been twitching for 6 days straight. Not every minute, but every 5 minutes or so. And worse after typing too.I'm glad you're not putting your body through a 14er. I think you need rest not exersion.I'm sure your EMG will be fine if you don't have true, clinical weakness. Something weird is going on in your body, but it's the the big, dreaded disease. You sound like you could have something odd like Fibromyalgia of CFS going on. I hope they're looking at those as possibilities.Mitra
B12 level was 411 (211 - 946 is the range). Everything on the blood work was normal. no sign of muscle wasting in my blood either. you know how your legs feel after standing on pavement or a hard surface all day? that's how mine feel with regular activity. anyone else had this? thanks mitra for your good wishes. they are appreciated.
I have had this but only from time to time. Like taking a simple walk will exhaust my legs. Or my entire right arm was just feeling weak and achy yesterday (fine today).I think this is common in BFS or at least on this board. Maybe not to your extent, but I it's definitely there.Mitra
Got a question for you all. i am experiencing a strange ache in my upper arms and a feeling like little bugs on me as well. I have the ache both at rest and when driving. There is almost a tingling with it but down inside the arm not on the skin. Anyone else had this? on my Colorado trip and having a ton of anxiety. have walked but legs move slow and get stiff after about a mile. taking cymbalta which has definitely helped the neuropathy in my feet. twitching all over continues as do my hand symptoms. thanks for listening.
I've had both. In fact, I've had weird aching in my right arm the past several days along with tingling (and a thumb that has been twitching every few minutes for the past 10 days - horrible hot spot that is driving me nutty). I have also had the bugs sensation but that's always on my scalp, and it feels very real like there are flies or bees in my hair (pretty disturbing for me when that happens).
Have my emg and nerve conduction test this coming Friday morning, the 16th. Still having same issues as previously written. Am taking Cymbalta which seems to be relieving the cold, burning neuropathy in my feet. Legs still get tired, I am still fatigued (hard time getting going in the morning), still have hand weakness and twitches. Anxiety high, as you might imagine. Still not feeling good, little energy.