Finding Strength Through Running

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jaraphiel12

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Hello Everyone,I am so excited to have found all of you!! Some of my symptoms sound so similar to all of you but some do not. So here is my story.Three years ago I began running. I dove straight into long distance running...I was hooked. I have participated in triathlons and marathons. I loved being very active and healthy. Last June I was thrilled to find out I was pregnant. I ran throughout my entire preganancy. I enjoyed a wonderful pregnancy, the only strange symptom being that my legs itched like crazy for about 4 months. I had a completely unmedicated birth almost 8 months ago. She turned and broke my tail bone on her way out. I sat on my feet alot to relieve the discomfort of my broken tailbone. In the beginning I had a very difficult time breastfeeding, which let to great amounts of stress for the first several months. I completely stopped running because it seemed to interfer with breastfeeding as well. About 2 months after she was born my feet began to hurt terribly when I would step out of bed at night. To the point that I could hardly walk. I was scared it was athritis becuase it was so uncomfortable.Two months ago I started trying to run again. After a week of running I noticed that my left let felt like I had run 20 miles on it after only running 1 mile. This feeling lasted for days. My left leg felt....awkward. Very unfortunatly my Uncle was diagnosed with ALS in March, so I was very familiar with the awful signs. I started to get concerned with ALS becuase my leg felt so strange but I knew that I did not have the twitching.....the next day my left leg twitched non stop. Within days the rest of my body twitched out of control. That was two months ago and now I have experienced that "awkwardness" in my left leg, left and right arm and my tongue. Though the arm and tongue sypmtoms come and go...the feeling in my leg has stayed. The twitching has somewhat subsided but the feeling in my leg seems to get worse. I was TERRIFIED to say the least of ALS...so I made an appt. with a neuro and had a nerve conduction test and emg. Both came back normal...although my emg did show a fasculation in my left leg and, what the neuro called muscle irritation in my right leg(which looked to me like static on the emg). Has anyone else had this on a emg? My neuro said that I have a case of BFS. Although, I have that diagnosis, I live constantly self checking. I walk on my toes, curl my tongue, see if my sweet baby girl feels hearvier in one arm or the other, heck I feel like my left hand is not has coordinated as my right as I sit here and type this message :( I want to get past this to be the best mother to my beautiful baby girl that I can be. I can handle the twitches but I can't stand the way my leg feels and sometimes my arm. It is like they feel weak but I have never fallen or dropped anything. They feel very awkward. I know some of you have talked about "percieved" weakness but I just don't know if this is that. I feel like it is the beginning stages of something bad and it scares me to peieces. It is so mentally and physically draining to be in a constant state of worry. I tell you if my leg would feel normal again, I would never complain about all the little aches again!!! I just want to not dread standing up becuase I know my leg will feel so strange. It has been a difficult last 8 weeks!Any input would be so appereciated. The posts on here have helped me so much. I cannot tell you how many 3 am freak outs I have had over this. Thank you so much for taking the time to read my story!
 
Sorry to hear about your situation. I think what most people will tell you first is that the fact that you had a normal EMG should put any thought of the A word out of your mind. Your symptoms are something else. Secondly, the fact that you got a diagnosis of BFS, while not great, is better than many alternatives. I relate to some of what you are going through. I believe that I bring on phantom symptoms after I hear about some awful disease, or have a close encounter with someone that does have something bad. I don't know if you are as bad as me, but unfortunately I have trouble putting thoughts like that out of my head. If I am occupied with other things, I'm fine, but when I have free time, and I have a lot of it at this point in my life, I torture myself thinking about diseases and what not. I may end up going to a therapist to deal with it. That might be a path you decide to take if you can't stop obsessing. That's not a judgement BTW. A lot of us do it.
 
TomTraubertsBlues,Thank you for your reply. I have watched that terrible disease take my uncle away a little at a time, so I have definitly considered the possibility of this being psychosomatic for me. I have a degree in psychology, so I am familiar but I really don't think that fits me. I had a good friend diagnosed with MS two years ago, I never worried for myself. My grandmother has had cancer, a stroke, a heart attack, and is now in heart failure and again, I have never worried for myself. I guess I could be wrong but I have never done this to myself before. I know that I have twithces and my leg feels like it is going to give out at any moment and my arm feels the same. This is so frustrating. I wish it would go away when I was busy. I have a baby, I am always busy...it does not seem to help :(
 
Hey there newmommy,I'm so sorry to hear about your uncle. I can't imagine how hard it would be to watch someone I love suffer with such and awful disease, muchless to deal with the symptoms we deal with at the same time. I've seen numerous posts about people who didn't worry about their own health until they had children. I have always been a hypochondriac, but it did intensify once I had children. I started to worry about getting to see things like their graduations, their weddings, my grandchildren. Often times I worried about how my husband would manage everything without me, if he would be able to remarry, it goes on and on and on. Worry is a vicious enemy. As far as the weakness you are experiencing, I can relate. I do believe 100% it is perceived weakness. Sometimes I feel incredibly strong, I can run, lift up heavy boxes, do pushups...and then other times it seems a struggle to lift up the bottle of laundry soap. Sometimes I can sit at the computer and type for hours without once noticing any tiredness or cramping in my hands, while other times it seems like I cramp up and my fingers are clumsy the entire time. The fact is, when I need to use my arms, my hands, my legs, I can. True weakness means you can't do it...ever. It starts getting weak and it never gets better. This is not what you are describing. In the beginning it was the twitches that drove me nutty, but like so many others it is now the cramping and weird sensations like "weakness" and rubbery feelings in limbs that make me mad. I still twitch...one i the calf, one in the shoulder, one in the scalp, one in the eye...they jump around with no rhyme or reason. A few days ago I posted about my fingers driving me crazy because they wouldn't stop jerking around. Today I noticed they hadn't moved in a couple of days. There is no real pattern to BFS. I hope you find the support you need here on the forum and that you can get ahold of your anxiety before it gets the best of you. I totally lost months of my life earlier this year because of health anxiety. Vacations I don't remember, get togethers I skipped, days I refused to get out of bed. Take it from someone who knows what a life-stealer anxiety is, and don't let it take over your mind. ~Frances
 
Hy newmommy, i guess this is very scary for you. But I can tell you from my exeriences, that awkwardness in the legs is totally normal for BFS. I have this in my right leg, it is just a mess...but you can walk on your toes, walk on your heals and all that stuff, so it is not real weakness but perceived weakness. This sometimes drives me crazy you know, but I know it is harmless. Fascists on the EMG are quite normal for BFSers, that's why it is called fasciculation syndrome :) I would not even think about the stuff he found on your right leg if he says it is just an irritation, especially as it is the"good" leg. I guess you never heard your uncle say some parts of his body felt weird or weak, I guess they were really weak when he noticed it. And ALS does not start with widespread twitching, but I guess you know this already but these nasty thoughts are just stuck in your brain. It is amazing how many people here started bodywide twitching after reading/thinking of ALS. It seems to be quite easy to get your body to an "twitch overdrive" by thoughts, and I just hope someday someone on here will find he "off" button.....
 
Hi newmommy! you are a spitting image of me! though BFS can come on from many reasons I believe mine was having my baby then getting phemonia right after and also dr google and my mind didn't help. twitching head to toe literally, perceive weakness on many parts of my body, truly to this day I have 0 weakness. ok this is what I want you to do, may sound goofy but I would do this and it would tell me with al's it doesn't come and go. Ok walk just a little ways with your eyes closed, relax completely take a deep breath and see how your legs move, I guarantee completely normal. Here is why we think our leg doesn't work correctly, we are focused on it which puts stress in that area which then aches and perceives a tired leg. are u nursing? I nursed for 17 months and when I did blood tests I was really low in potassium, and vitamin d the two key nutrients for our muscles. I have now been taking 2000iu of vitamin D and drinking 1 bottle of powered a day, I barely have twitches anymore. every odd or new twitch that comes along I still send JohnnyRocket a pm haha, he probably shakes his head. I'm learning to deal with this daily process and u will to. I lost 2 years of my brand new baby, I barely remember anything and that's sad because my girls are my world! I'm so sad to hear about ur uncle, makes me sick. But plz try to fight this awful battling thoughts before u get as bad as I have been. this may or may not be ok but u might want to see ALS first hand and talk to ur uncle. Matt just got back from his nuero and he was in a room full of al's patients, made him realize how normal he is. Im thinking of u and parting this yucky nightmare will end for all of us and we will soon be twitchy worrying free. Ashley :)
 
Hi newmommy!I have two small children so I remember pregnancy, post-pregnancy, etc. very well.Remember, having a newborn is one of the most stressful periods of our lives. As much as you love your baby girl (and as all of us who have kids know - that love is deeper than anything in the world), you are exhausted. Not to mention, every time your baby cries in the middle of the night, it creates even more stress and tension (especially if you can't get them back to sleep easily). You're hormonal because of post-pregnancy and breastfeeding. You're dealing with your uncle's illness.Trust your EMG. My body was completely taxed after having my children. I had an MRI done because I could hardly sit my tailbone would hurt so much (turned out to be inflammation) and my lower back (which went into spasm with my second pregnancy), has never, ever been the same. That being said, I was an older mom (37 when I had my daughter).Hang in there. You've done the tests you need to, and maybe you should take a break from running until you've recuperated a little bit (you may have said that you did). Remember, when you exercise vigorously, lactic acid gets into breast milk anyway, which can cause your baby's tummy to get upset.I'm very sorry about your uncle. I also have a psych degree (master's) and it sure makes us very aware of what we're dealing with (health anxiety, generalized anxiety), but even though our logic tells us what we're dealing with, the emotional factor overwhelms us.Again, I know how stressful this is for you. Most of us on this board experience twitching, and we're here for you as support, remember that.MitraPS: Did you ever have blood work done during your pregnancy for the itching? I have a friend who experienced the same thing, and it had to do with liver function. Of course, it goes completely away after pregnancy...
 
newmommy,Check out the bfs chat that mommyLDN started. You'll be able ask questions live and it might help with your anxiety.-Matt
 

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