Caregiver Crazies

[Daphne]

I frequently read the ALS Forums, but I don't see this topic addressed: how many of you ALS caregivers start exhibiting bizarre physical symptoms?

I'm a 45-yr-old wife, college teacher, and mom-of-four. My life is wonderful, except...

My older brother was diagnosed with ALS 12/09, and sure enough, in the spring of 2010, I started having strange twitches everywhere (head to toe), slurring of speech, fatigue, cramps, etc. I had an electrocardiogram done, a whole battery of tests (thyroid, kidney, bloodwork on everything from cholesterol/sugars to vitamin levels), have seen a therapist, and I intermittently take Xanex. Guess what? There's nothing wrong with me, and nothing alleviates my symptoms (twitches and minor cramps continue), although the more frightening ones are less frequent (swallowing weirdness, fatigue, tongue twitching, breathing issues). Thank God I have not experienced weakness -- that would really get my heart racing! And I take comfort when I have sharp pains in my muscles, which is not indicative of ALS. Fibromyalgia? I'll take it!

So by now you're saying... so what? She's a nut-case! In fact, I don't think I'm experiencing such a rare thing, and I'll bet some of you out there are feeling what I'm feeling. Because of my academic position, I have access to plenty of peer-reviewed research, yet I found only ONE study that showed a connection between having a relative with ALS and the development of Benign Fasciculation Syndrome or other weird neurological conditions... and a high percentage of those sufferers were in the health care field... they knew better! And they were educated, yet still, their brains created extra stress for them.

No matter how much I reassure myself via research and trolling the ALS forums and being vigilant with my health, there will always be a fatalistic part of me that says, sure. There's my future.

Does anyone else feel the same? Please respond.

By the way, my brother's ALS has progressed rapidly. Less than 2 years, and he's now in hospice, paralyzed. He's refused any intravenous help (eating or breathing), so he won't last long. His hospice house is amazing... and he's still stubborn as the dickens. Just today he expressed his annoyance that I didn't put his bed rail back in the correct position.

I love him, but I hate seeing him. Before and after my visits, my body revolts, and the twitches come, as if taunting me.

 

[Atsugi]

If the slurred speech could be attributed to either fatigue or distraction, I'd say it all adds up to plain old stress.

To be more specific, Adjustment Disorder. Mine almost killed me.

 

[Danijela]

When my partner received his diagnosis I started to 'twitch' all over. I lasted for about two months, I knew it was stress related as this happened to me before. I completely dismissed it, I was too busy doing other things to pay attention to it. So it stopped.

And yes, it has been mentioned before...it is not uncommon. It can lead to some dark places, where one's health or fear of desease become an obssession.

All the best,

Dani

 

[LizT]

If your brother is the first in the family to have ALS, then that will help you put it our of your mind. If this is the case, then he most likely doesnt have the hereditary type. Stress and anxiety can do all sorts of crazy things to us. Even if you dont have typical symptoms of anxiety, this is how it could be showing itself.

 

[fba75]

When my partner received his diagnosis I started to 'twitch' all over. I lasted for about two months, I knew it was stress related as this happened to me before. I completely dismissed it, I was too busy doing other things to pay attention to it. So it stopped.

And yes, it has been mentioned before...it is not uncommon. It can lead to some dark places, where one's health or fear of desease become an obssession.

All the best,

Dani

The same thing happened to me a few months after my wife diagnosis.
I m used to various stress related symptoms so I knew it was just that and did not even bothered to talk to anyone about it (and took special care my wife would not see the twiches). It was the first time for twitches symptoms but I have got far worst stress related symptoms before. It went away after a few weeks.

For me, magnesium helps. When I get some weird things happening, I take magnesium for a few weeks. I also take it easy on my work and try to relax more.

 

[amber and bruce]

I gained a strong case of the dropsies, I tend to drop things all of the time; not so much of twitches or slurred speech. And then I thought "What if.....?" And went to all the horrible thoughts of my children without either parent when they are so young (6 &3), so I decided not to think about it and that I am just a clutz.
Amber

 

[Daphne]

Thanks, everyone. It's like I have a battle going on in my head: my logical side says "woman please -- you don't have ALS," but my illogical side can't ignore the daily cramps and twitches (it's been happening for 18 months now). If this is anxiety, it sure is a weird strain of it.
Ah well. Life goes on, thankfully.

 

[LizT]

Daphne- if youve had symptoms for 18 months and youre not disabled in any way, you can really relax.
Good luck

 

[dian_na]

sometimes I think I might but then I don't, I jus might have the dementia part ...............

 

[loralie]

Daphne,
I am so excited to see your question. I've had this same question myself. I have no chance of it being hereditary ... it is my husband who has ALS. He was diagnosed three years ago, and I have had fasciculations for three years myself. I do not fixate on it ... I've been much to busy with life to do that, and so I do not think it is stress and I know it isn't my imagination. (I also know how my body reacts to stress and this isn't it ... at least it never was before). I get them in various spots, but most consistently in the arch of my right foot ... it is very visible to anyone, and over the past three years it has expanded to look like lightening in my foot ... it looks just like the fasiculations i see on my husband's body. It is related to exercise ... much much worse after running ... even when i stretch i can feel it ... Now I have them ini the other foot and in my calves. I've wondered if it is a clue to something environmental that is causing his ALS. I used to hope that my little symptoms were a clue that we both had something that wasn't ALS, but was something else completely (because his weakness was progressing so slowly) but now it is more and more evident that he has ALS. I had an EMG and nerve conduction study a year ago and it showed that I indeed have fasciculations, period. nothing abnormal. so ... what do you think this means? I am so interested in your question ... Healthcare providers have basically all said that I am more sensitive to the twitches because my husband has ALS. they tell me stories about med students and residents who develop twitches when they study ALS.
Thanks for putting the question out there. I asked once a year or two ago, and was comforted by some responses of spouses of PALS who had felt it too.
Loralie

 

[loralie]

I just re-read your message and am sending another reply. I'd be interested in the ONE study that you found. (about relatives/caregivers who develop symptoms). It sounds interesting. Your symptoms sound scarier than mine, since mine are limited to fasciculations. How are you now? How old are your four kids?

 

[alightsey]

I started haveing alot of twitches in my calves muscle are not long after dad was diagnosed. I read up on alot of stuff and STRESS seems to be the answer

 

[artist09]

I'm so glad to have found this post. I posted something similar and someone sent me here. I started having symptoms the moment my Dad was diagnosed with ALS in June. I twitch all over and now my thumb locks up and doesn't seem to work right all the time and twitches too. I'm 35 years old and started to become worried about FALS although we don't have it anywhere else in our family. I am taking anxiety medication now and that has slowed the twitches, but they are still there. I hope I am experiencing the "caregiver crazies" and not the real thing. Dealing with a loved one with ALS causes stress and stress and anxiety can cause twitching, so it seems to be a vicious cycle. I'm guessing we are all fine and glad to know I am not alone. Thank you for starting this post.

 

[loralie]

Hi artist09, it really is comforting to hear of other people with the same thing, isn't it?
I am sorry to hear about your dad.
As far as our twitches .. it seems weird because never ever in my life before has stressed caused twitches/fasciculations in my body. (and probably not in yours, either, until June ...)
I wondered at times if it was my body answering (reacting to) my husband's body ... because I feel his twitches on me as we cuddle at night. I guess there must be some strong minid-body stress reaction going on.

 

[LauraW]

Daphne,
Are you familiar with Reiki? Try it. I think it could help you! I understand your post all too well!