Questioning the Purpose of Relapsing to ALS Sites

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InkedMama

Well-known member
Why, Why, why...when I start feeling "cured" mentally do I find myself lurking back to the ALS sites. Why do I do this for myself. Today was a weird day. I had to witness the burial of my 17 year old cousin whom was killed in a car accident this past weekend. After we left..I went to dinner w/ the family. I was sitting there in conversation and I had put my hand up to my chin to rest my chin on my fist...my fist started shaking (tremors) I guess. I freaked out-- but then went on about my dinner.Tonight I logged on here to see how Sandra's neuro visit went...and then lurked my way around the internet straight to the ALS forums. The past few days my left shoulder has been hurting and my arm "feels weak" to me. I must admit that Tuesday when I went to buy groceries I was picking everything up w/ my left arm (including 24 packs of water etc , heavy stuff) to check my "strength". Although I cannot detect any "real weakness".... it just feels tired. So here I sit with tears in my eyes scared. (just as i was getting better). I have my cousins casket flashing before my eyes...the people gathered around- and all I can think is its gonna be me soon. I know that my symptoms would not fit the pathology of the disease.*18 months of off and on twitching** onset random pops here and there, no hot spots**no atrophy**28 year old female*(I am almost to my 4 month mark on this "set" of twitches, just when I was seeing daylight my left arms does this)What got me is ofcourse I see on that forum- "mine started out w/ a little weakness"....Ok. So why am I told that the weakness you get concerned about is the "I cannot do this weakness etc". The clinical weakness?I was tested almost a month ago. My strength. My upper body was perfect. Which gives me peace for now. I dont think it would have gone down hill that fast.. I pray to God not. Dont get me wrong, I can lift my left arm, lift heavy things, and do push ups w/ no noticeable weakness in my left arm. WHYYYYYY am I spiraling down again??????? why why why?????Lovely
 
Oh no, nononononono....you broke the cardinal rule!! Shame on you ;) I can understand that you had a very rough day with a funeral and all, but no more sights, about ANYTHING!! Again, if you get the urge to research, look up something about your baby coming, research new ways to help with anxiety(meditation, tai chi, mello music, etc...), research new healthy things you can do to prevent(more common diseases) that EVERYONE on this board SHOULD BE worried about(not too much) When I find myself wandering around through the internet, I stay on those sights, and if I get in that weird curious mood to look up "other" things, then I know its time to get off the computer and watch tv, read, yoga, call somebody, something..... WE ALL KNOW youre ok!!! In fact, I've had an achey/twitchy left shoulder for about a week now, my mind wonders into that worry-zone about it now and then, but then I remember, oh yeah, I'm starting to work out again, things are going to ache, I have bad posture at work, etc.... 18 MONTHS on and 28 years OLD, youre FINE!!!! TRUST ME, trust yourself, and trust and believe in what youve been kindly saying to everyone else still worrying with a similar length of time twitching as yourself!! Hang in there, just another case of the ups and downs with BFS, just stay off the sites, in fact if its too tough, stay off the web!!Take CareB
 
Dear girl: You really do know better than that :confused: . There must be something in the air here in the south. My left shoulder has hurt all week and two days ago my right arm twitched in places that it never has before. Now tonight, I'm hurting there. Just weird stuff. YOU ARE NOT GOING ANYWHERE!!!!! You are young, healthy and vital! I will tell you something that I am noticing, whenever I find myself anxious about anything, I tend to get anxious about *** again. It's almost like place I hang my fears on. BUT, its not going to get the best of me and this is not going to get the best of you. You are well, you are fine, you are great!!!BlessingsCindy
 
This reminds me of two things that I often see before my worse waves of symptoms:1. Being in a situation where I internalize my fears. This usually happens on the weekends, when I'll go out with friends and notice symptoms when I'm at a restaurant or the like. Being out is obviously not the best time to break down or smack down my fear, so I subtly file it into my "to worry about later" list. If it's a busy day, I can end up with five items in my "to worry about later" queue, so when the time comes that I can finally depressurize, the worry is usually intense. I think it's exacerbated by the fact that sometimes its hard to remember all the things one was specifically worried about, so you just have a lingering sense that "many unaddressable things are wrong." I think that if you are aware of yourself filing away your concerns, it can help to think that the ones you put off are no different than the ones you're actively dealing with (if you're me) numerous times per day.2. Doing stupid things because I start to feel better. Often times I use my "better feelings" to start sleeping less, drinking more, or seeking out more information about the worst-case scenario that I was afraid to look at previously (which it sounds like you were doing with the *** forums). I can't imagine ever visiting *** forums and leaving feeling better. The gist of the situation is, you'll always be able to find similarities between yourself and someone that has a worst-case scenario. What's harder to fully appreciate is that the differences outweigh the similarities, in particular, if you've been twitching for 18 months I'm sure you've been examined plenty well by now. Look around this board and its not hard to see that weird symptoms abound.P.S. If you shoulder soreness is something to be worried about, then we're both going down together, as you know from responding to my previous post about overall joint soreness... :)
 
thanks yall...its just been a anxious day for me...i've done this over my legs feeling heavy before- that too passed. I felt the anxiety coming on all day- I reallllly did. I just thought i'd waste some time and google a bit- why wont i listen to my doctors and my rational mind. i have lost no strength in my left arm and i dont even twitch there....lol its just another 'phantom' symptom i guess or i over did it when i trying to see my strength in my non dominant hand!!! besides before it got to my arm and shoulder i'd think it would ne affecting my hand first...huh?as i say "this to shall pass". it will! i know it. Gods good.Lovely
 
Lovely, you beautiful girl!!There is such a real difference between perceived weakness which I have had on and off and clinical weakness! If you are doing lots of strength testing then your arm will be tired and sore. You know you are fine, you have been a strength to me through this whole thing. Go girl and prepare for your beautiful baby.Luv yaSandrax
 
Thanks Sandra, I just had a bit of a anxiety break down. Its been a rough rough day. You'd think me having worked in hospice i'd be a person that could easily handle tradgedy such as my cousins death- but...I am human. I took my klonapin- and got in bed (on lap top) and now my arm feels just as normal as it can be. Isn't it amazing- I fixiated on it- then i started lifting things w/ it..then it got tired and I wondered why? silly me. ;) ;) I am glad I have helped you throughout your rough time. Ive always been stronger for other people than myself- I think I need to give myself more credit, eh? Thanks for posting tho! I am ok now. 12 more weeks and I will be holding my beautiful baby! I have so much to be thankful for!!!Lovely
 
Dear Deedee,I just got of the phone with my neurologist (Leuven - Belgium, one of the most specialised clinics in the world in the research of ALS). After a clean EMG and dx BFS the change to still get **S is as good as zero: 99,9% 99,9% is always the highest that they can give. The chance of getting a plane on your head is equal. So let's both stop worrying!! (And in your case I think it's also due to your pregnancy, my psychologist told me that 2/3 of here body was paralised during here pregnancy. she was afraid it was a brain tumor but it wasn't and she got ok again after her son was born..so... you are fine! YOu got it so long that you are clear 1000% There is a beautiful child on the way, waiting for a fantastic mum! Best RegardsBart
 
Thanks Everyone, JoAnne, Break out the NOODLE...perhaps a wet one lol Bart- I know it hon- I had a rough day as I stated before...I appreciate YOU being able to help me. Especially since you've had a few rough days yourself. See, this is a clear point of how BFS FEEEEEEEDS off of anxiety. It saw me weak, (mentally) and it attacked me. Today my arm is fine. Nothing is wrong!!! You are fine too hon- I promise you. I have Generalized Anxiety Disorder- so when I freak out, I FREAK OUT....I also had skipped my medication yesterday too. Thanks Everyone, Sandra, Boster, Bill, and Cindy for pulling me back up!!! I'll try not to do that again- I almost deleted and I thought NOPE...I am going to leave it up b/c its just ANXIETY and it plays a HUGE rule on this mess.Love yall all, Lovely
 
Breathe and be calm. You have been stressed which is a set off to this condition as well. If you strain your bicep tendons that can also make your arm feel weak. Carring a lot of things, even your bracial plexis can make you arm have problems. Do some gentle strecthes and give your arms a rest for a few days. If you has *** you wouldn't have been able to carry anything like you did. This stuff is scary, I have the tongue thing going on. I make myself read BFS in a Nutshell every so often to keep my sanity. God bless,Anne B.
 
Dee Dee--When you feel the need to lurk, try e-Bay instead! Trust me, the only thing scary there are some of the things people sell.You answered your own question--someone said they "started out with a little weakness", but the key here is that this weakness, if it did start out "little," will progress without a doubt in short order. You've been cleared by your doc, you've twitched long enough for something bad to manifest itself, not passing weakness. I had a hot spot above my left knee all week. Today it's gone, and I have flutters in my right foot. I'm now in a place where I can say "so what." Please join me in that place--and stay there! :D) It's spring in the South! Go out an enjoy it and never, ever self-diagnose and/or nose around the internet again.Mark
 
Thanks Mark- I am fine today- Shoulder is fine, strength is fine (strength was never really effected) my shoulder was just "sore" so it made me think it was "weak". Today it feels completely normal. Isn't Anxiety a "son of a biscuit?". My anxiety was PEAKED yesterday and it knew my weakness therefore it was gonna manifest itself to me. It is Sooooooo WARM here I love it. WOW. I love spring. I love summer! I am sooo glad to see WINTER GO! Its depressing to me. I have been cleaning all day- Went and baught some things and I guess Im gonna bathe my dogs. FUN eh?Mark Im joining you- I will NEVER search I again I swear. Its stupid- Its worthless and its my doctors ORDERS!!! lol. 3 doctors orders.Have a good day. Lovely :sick:
 
I know what you mean... sometimes I have that exact same thought that I hate myself for thinking so negativly. It is just so hard not to sometimes when you cant stop twitching and buzzing and everything else that goes along with BFS! I just wanted to suggest thenestbaby.com and they have great forums for expentant mothers, parents, etc and they are so interesting. Instead of going to those horrible websites and reading stories try the nest baby! I love it and it helps me.... you can even post questions about your twitching and you will probably get answers within minutes on there. There are so many people on there you can get like 10 responses in 5 min... its so fun.
 
thanks girl :) I am nuch better today- the shoulder soreness is gone. Thing is, thats not even a sign of *** so why would my mind EVEN GO THERE???? its stupid- lol today I feel like a million bucks. :sick:
 
WHEW, that day was a VERY BAD day- I again appreciate all your replies and reassurance.. Today I just wanted to acknowledge the fact of being "Good and Ok". Besides seemingly less twitching..I have no pain or weakness..I am almost to my 4th month mark of this new twitching round. Somehow my mind wont let me count last October the 2006 twitches as part of this when it WAS indeed the same thing- I just didnt panic. I should actually say I am at the 18 month mark- I need to practice that.As I said in some of my previous post when we have break downs and come for comfort I feel that when we have good days we need to post as well. Its the whole waxing and waning issue w/ this Up N Down ride. Monday I am going to find a local hospital or nursing home to start back doing some nursing. I am sitting at home and on this board way to much- Despite my husband cutting the cords, changing my passwords, and blocking me out. I have smartly finaggled my (however u spell that word) my way around to getting back on here. OCD I'd say??? You think? NOOOOOOOOOOO way?? lol NOT ME :LOL: I hope to get busy doing nursing part time and it will make my baby girl get here quite swiftly. I know day by day, week by week, I am mentally a lot stronger thx to everyone AGAIN. Normally a fellow newbies poster would have SENT me OFF THE DEEP END but the past few days it hasn't....I've been good, I've been strong and most important i've been rational.Yall pray for me and my upcoming job interviews. I just want to get back into nursing. I LOVEEEEEEE my old patients, the alzheimers, the dementia....the cancer ridden...the whatever is ailing them patients. They are PRECIOUS and they make life sooo much more appreciative. I need another OCD don't ya think. My hubby asks me why I dont get a OCD about touching up paint w/ a thin brush in the babies room.. (thats just not my kind of ocd)....unfortunately lol.Ok Im rambling. Im bored- I'll go walk the dogs I think :sick: Are yall tired of me yet?? lol
 

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