Bad Mental SetBack...need help (long)

Information about how to manage or reduce the severity of BFS symptoms

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Bad Mental SetBack...need help (long)

Postby mike3456 on September 25th, 2004, 7:11 pm

HI all I'm on day 4 of Zoloft. Started off as a good day...leg symptoms almost completely subsided and very little twitching. Then we went out shopping. I lift two bags of items from the car into the house with my right arm. Maybe the weight of 1-2 gallons of water. After doing that my right shoulder and bicep felt fatigued. It wasn;t a long carry at all. Now there's this fatigued feeling in that arm. That arm has been fine as far as can tell since the twitching started 6-7 weeks ago, but the twitching started in that same right shoulder (as far as I recollect). That arm also felt heavy and tingly back on that 1st night of twitching also, but was fine from then on until today. What's worse is that as soon as I noticed the fatigue htere I got a twitch there! I can even feel it as I type, like by bicep and shoulder are now fatigued/tight...like a perceived weakness. I've never experienced that before. I don't work out, but I was supporting the top half of my body for a few minutes this morning with my arms (use your imagination). I haven;t been eating that well the past week and, although I feel I got enough sleep last night, I haven't been sleeping enough the past week either. I used that arm for my mouse every day at work and home and I do tense my shoulders a lot due to anxiety and poor posture (I catch myself with my shoulders "shrugged'). I'm trying to find reasons to justify this because I'm scared.- but I don't remember this happening before after carry relatively little weight for a short distance. I started freaking out about it and went into almost a catatonic state of despair for a 1/2 hour with my g/f and driving around doing errands. I barely heard a word she said.

I worried about "weakness". I had a nearo exam 2 days ago that he said was "perfectly" normal (see my previous posts) and that he was 100% sure this wasn't the bad disease. But how does he know what my strength should be? I mean in the *early* stages of the bad disease I imagine the strength is lost slowly...certainly over months. He did my reflexes in that arm, but would they should a change early on, before *profound* weakness?? I mean I'm scared because my twitchings only started 6-7 weeks ago.

I'm trying to believe that maybe I really do have classic BFS...maybe my muscles are fatiguing easier...isn't that in the BFS symptom list? I know this isn't imagined, but maybe my the Zoloft is magnifying my worry??.....this is the worst I've felt yet.

I know they say that weakness may start with twitching or more likely preceeds it in the bad disease, but I;ve seen a Neuro post on another board saying that most present that way because most people don't notice their twitching. I know info on this board says otherwise, but I don't know what to believe. My EMG isn;t until Wed. and now I'm depressed again.

I have no atrophy and never noticed any twitching in my hands and no loss of grip, or ability to button, but why the shoulder fatiguing so easily?? Does the bad disease *always* present in the far extremities first (hands/feet) or can it start farther in (shoulder)? Can the non-twitching symptoms migrate from a leg one day, then decide to show up in an arm the next??

What scares me is not having the EMG to comfort myself. The doc didn;t even want to do an EMG. I'm trying to take that as a good sign, but I keep thinking that maybe his thinking was..."OK this guy has no clinical signs of the bad disease *today*. His symptoms up until now are not *typical* of the bad disease, so I can justify saying *today* you signs and symptoms 100% are not the bad disease and justify *not* doing an EMG on him. Time will tell if he really does have the bad disease, and then the EMG can be done." Notice the difference...he didn't say I know 100% you dont have the bad disease...he said I'm 100% sure these clinical signs and symptoms are not the bad disease. He said I dont want you to worry about it..well of course not, hows that going to help me?

I really need some reassuring with some good information......thanks.
-Mike
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Postby mike3456 on September 25th, 2004, 7:15 pm

To clarofy in *BFS* can the non-twitching symptoms migrate from a leg one day, then decide to show up in an arm the next??

Also to clarify I *did* talk him into an EMG but it isnt until wed.

any help would be much appreciated...I'm lower than low right now.
-Mike
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Postby ann on September 25th, 2004, 8:21 pm

Awwww Mike!!
Now I have had BFS for over 6 years and I have experienced everything you described. I often get weak, heavy feeling legs...sometimes before intense twitching and sometimes after. I also sometimes have greatly diminished hand strength....it takes a lot of energy to twitch so much!

Twitching is just your bodies way of telling you that you need to take a few deep breaths and relax.

Take a hot bath, do a little yoga, pop a few melatonin and go to sleep!

Hugs,
Ann
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Postby whatnext on September 25th, 2004, 8:21 pm

Hi Mike.

Perceived weakness comes on for no apparent reason. It nearly floored me the first time I experienced it...thought my legs would cave right in but they didn't. They haven't yet, and they never will. Same is true for you too. Perceived weakness is not true clinical weakness. Someone recently posted to remind us that true clinical weakness is the *inability* to move a limb, and NOT the *feeling of fatigue* that nearly all of us here experience. If you can drive a car, you don't have weakness. If you can pick up your groceries, you don't have weakness. If you can pick up your kid (for those of you who have kids), you don't have weakness. If you can open the refrigerator door, you don't have weakness. The list goes on.

"The bad disease" doesn't migrate. BFS symptoms migrate from limb to limb and from place to place all over. Here today gone tomorrow = BFS. Here to stay = the bad disease. We, and you, have good days and not so good days. The bad disease has no good days. Read my post in the Support Group about my anxiety attack last night. It lasted all night long and well into today. My tongue was undulating and I was scared ****less, knowing deep down it was a side effect of the zoloft and/or just bfs. Anyway, the anxiety fooled me into staying up all night long worrying. Around mid afternoon, it all just stopped and I returned to normal. I got me some Chinese takeout for dinner and had two plates of moo shoo veggies then I graded some papers (I'm a teacher). As I sit here writing this, there's nary a twitch or undulation anywhere. No perceived weakness either. I just did some light weight lifting, tippy-toe walking, heel walking, and some other light exercising and didn't miss a beat. I'd been doing the tippy-toe walking for years as light stretching exercise before I even knew it's a neuro check for weakness. If you can walk on your tippy-toes, you don't have weakness. Notice that even though your arm and leg may *feel* weak, they're not becuase you can always get up and walk around. You can always pick up that soft drink can. It's not true clinical weakness. It's fatigue, but your brain is not telling you "fatigue". Your brain is telling you "weakness". We have to learn to understand the difference so the brain can't trick us!

My first couple of weeks on zoloft, my calves were the preferred twitching spot. Last week, it was my forearms. Yesterday and today, it was my tongue. No worries. That's just how BFS works. It's weird. It's strange. It's confounding. It's illogical. It's scary. It's capable of reducing me to a shivering mass of solid worry, as it did last night and probably will again. It's benign, and I'm finally beginning to understand that. It's not easy though.

Yes, being easily fatigued part of BFS as I found out the hard way. I had nearly three months of perceived weakness BEFORE I started twitching. I had migrating paresthesias too. I had some other strange sensations, like persistent tension in my calves, tremor, perceived weak ankles, and jelly legs. I got to the point where I was literally afraid to get out of bed, and lost some days at work due to that. I was afraid to go to the grocery store becuase I was afraid my legs would give out. That was before I found out about BFS though. I didn't understand the difference between perceived weakness and clinical weakness. Once I understood that, I was better able to apply what I was being taught in therapy to overcome the anxiety. I've found that on zoloft, perceived weakness is GREATLY diminished for me. Your mileage may vary.

Yes, the zoloft may indeed magnify your anxiety initially, untill you adjust to it. I calmed down after only three days, but the anxiety hit again last night with a major attitude. I'm told it may take a full 6-8 weeks to get fully acclimated to the zoloft. Many more nights like last night though and I'll need diapers. :)

Your case sounds a lot like mine. I'd never even heard of BFS but once I saw how nearly perfectly it fit what I'd experienced this summer I was greatly relieved. There's a NAME for what I'd experienced! Now I can effectively deal with it and so can you.

One final word. DO NOT -- REPEAT DO NOT -- EVER AGAIN VISIT ANY WEB SITE DEVOTED TO THE BAD DISEASE! That's what got ME into this anxiety mess in the first place. STAY RIGHT HERE WHERE THE FACTS ARE PRESENTED ACCURATELY AND THE SUPPORT IS POSITIVE.

Hang in there!!!!!!!!!!!
Last edited by whatnext on September 25th, 2004, 8:30 pm, edited 1 time in total.
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Postby Barb916 on September 25th, 2004, 8:25 pm

First, try to calm down.

Now, you've passed a neuro exam, right? That's good news. Your doctor didn't think your symptoms warranted an EMG...more good news. I'm glad you talked him into having the EMG to help put your mind at ease.

From what I've learned about the nasty 3 letter word, you would have some sort of DEBILATING weakness/IMMOBILITY as one of your symptoms...you don't. I've also read that it starts in a focal area and THEN spreads out. It doesn't jump around from day to day to different body parts.

Lastly, I'd bet anything the fatigue in your arm is just from you tensing that arm. I can say that because I did it to myself. 5 months ago, my left arm was so tense, the muscles in my deltoid would be burning beyond belief. My arm got so sore. I kept trying to stretch it to release it but couldn't. I just had to literally rest in on my lap all day. I was totally freaked thinking it was weakness. You know what it was? Me, unknowly tightening that arm. I did it for a good 2 weeks because I was in such a panic over all this! Eventually, I figured out I was doing it to myself, and was able to purposely focus on NOT contracting those muscles.

Your in the early stages of BFS and your anxiety is high. Please try to relax, mentally and physically. All this stress just makes your symptoms worse.

Hang in there until Wed when you'll finally get solid PROOF that all is OK!

Let us know how you make out.

Barb
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Postby whatnext on September 25th, 2004, 8:27 pm

One other thing about the zoloft. After starting it, I became hyper aware of my bottom lip! It looks perfectly normal, but it FEELS huge sometimes. One of the side effects of zoloft is twitching, and it can temporarily increase any existing twitching.
I will ultimately and completely crush, defeat, anihilate, and eradicate my anxiety so it cannot and will not do the same to me.
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Postby mike3456 on September 25th, 2004, 9:09 pm

Thanks for the reassurance.

It's just that the right arm felt fine all day and then I just lifted those two bags and only carried them into the house and put them down. And my shoulder and bicep siddenly felt like I had been doing bicep curls with wuights for 15 minutes. Not pain or cramping, just fatigued and tired in only that arm after lifting the bag and carrying it. That's the 1st time that had happened in that arm.

Has anyone had a experience like this, sudden onset of muscle fatigue after doing a relatively minor lifting for just 30 seconds or so? I mean ,it's not so fatigued that I can't lift anything with it right now, just a left over sensation of tiredness and fatigue in my bicep and shoulder muscle.

Thanks for the responses, please keep responding as I'm still scared!!
-Mike
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Postby Stephanie on September 25th, 2004, 9:17 pm

Mike, we've all been where you are. Some of us re-visit that place often. Perceived weakness (what I often have) is the "feeling" of muscle weakness. You may have rubbery legs, fatigued muscles, or feel like you will fall any second but don't. Sometimes it's in your head, sometimes you just may be overtired or overexerted. Real weakness (what my brother had) is when you try to walk and your leg just doesn't work, when you grab something and your hands don't work. It's when your muscles visibly don't respond. BTW, my brother had real weakness, slurred speach, abnormal reflexes, abnormal neuro exam and believe me his emg would have been abnormal too. Yet with all these obvious symptoms, he did NOT have als. Your only symptom is twitching. Twitching alone is not a symptom of als. Hang in there till wed. I'm sure after your emg you'll feel so much better. The anticipation of getting the emg is probably what's pushing you over the edge right now. Just try to stay positive and remember the important facts that point to you having nothing more than bfs.
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Postby mike3456 on September 25th, 2004, 9:30 pm

Stephanie,

I see your point about perceived weakness, but I have other BFS symptoms I think (see my original post). I hope anyway, otherwise I have something else!

I was on my home computer a lot last night...until 2am... and I noticed that my mouse is higher than my elbow, causing me to shrug my right shoulder to lift my arm up and use the mouse, I'm hoping this fatigued my shoulder muscles a bit and I didn't realize it until I lifted something today.

What did your brother end up having if you don't mind my asking?

Thank you (and everybody else) for the reassurance. This is the lowest I've been and I really need it. If anyone could chime in I'd appreciate it.
-Mike
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Postby graberc on September 25th, 2004, 9:44 pm

One of the guys on braintalk.org went to a canadaian doctor. That neuro said the "code" in canda was that fasics by themselves mean nothing. . .and do not warrant an "ehhh??"

So if you have fasics and pass a quick strength/neuro tests then the doctor has no reason to believe you have problems

olf course we never trust em, so we push for the emg
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Postby dont on September 25th, 2004, 9:47 pm

Mike,

I have the exact same thing with my right shoulder. I can be walking around Target or somewhere like that and realize that my right shoulder is shrugged and I know it's due to tension and anxiety.

I also have been diagnosed with carpal tunnel in my right hand and wrist but no EMG has confirmed it but it's suspected. My right arme does the weak thing and at work while using the mouse and keying a lot my hand gets clumsy and aches.

I found some carp tun exercises on the net and when my arm and hand acts up I go in the bathroom at work and do them and it goes away.

I think it's a combination of stress, tension and CTS. I also sleep in CTS braces and that helps because it keeps me from bending my wrists.

Hang in there
Karen
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Postby dont on September 25th, 2004, 9:49 pm

Her brother had MS. I thought I would answer for her since she isn't on her anymore because I don't want you to start imagining things and let your anxiety get out of control.

You had a normal MRI right? So you know you don't have that!
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Postby mike3456 on September 25th, 2004, 10:08 pm

Thanks Karen. I had the MRI Friday early morning. The tech said my doctor would have the results in 24 hours and I haven't heard anything yet. Don't know how quickly they will call or if they would call on a weekend if they found anything. I really hope the arm thing goes away by tomorrow morning or very soon. It's so hard not to feel despair right now.

Thanks.
-Mike
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Postby Stephanie on September 25th, 2004, 10:16 pm

Yes, he has ms--he's doing great now! You'd never know he had a problem. That's nothing for you to worry about though-your mri was clean and his was loaded w/lesions. He also had the highest spinal Lyme titer the hosp had ever seen. His ms was a good thing because now he takes care of himself. His pre-ms lifestyle would certainly have killed him.
My muscles fatigue easily too. I don't know if maybe I just notice it more. Holding my arm up w/no weight causes my muscles to burn. That used to worry me a lot. I couldn't even blow dry my hair w/out taking little breaks.
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Postby mike3456 on September 25th, 2004, 10:38 pm

Thank Stephanie, no MRI results yet ...I'm anxiously waiting...had it Friday morning. I have no idea when to expect them to let me know. I just want to get this over with. I never envisioned being in such axiety and despair.
-Mike
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