View Full Version : ALS fear is draining my energy
So it all started some weeks ago... I got this weird feeling/pain in my right forearm, and the best way I can describe it is tennis elbow... I've had a weird feeling in my hand when I clench it; it feels like it's weak, but it's not. However, I also noticed that when I'm writing with a pen, it feels clumsier than my left hand. It'd also prevalent when I'm typing on my PC... It feels like I can't grab easily as I used to with my dominant right hand, and it scares me... I've also had a weird feeling like a sock was enveloping my elbow and right leg. Yes... It's also on the right side,which makes me even more anxious... I've also measure my right forearm, and the circumference of my right dominant arm is smaller than the left arm... I'm also experiencing cramps in my forearm and hand constantly, and they only seem to go away at arbitrary times when I haven't been using the arm...
I'm so worried that I'll suddenly become weaker in the arm, it's totally ruining my life right now... I've also read some posts with people being diagnosed after having similar symptoms, and I don't know what to do... I visited a doctor, and he told me to come back if it gets worse... But tbh, I just want an EMG and know the truth, because the life I'm living right now is filled with constant worry... Sorry about spelling, but I'm too tired and sad to edit...
I know only too well how awful this fear is. Have you had it before? All I can advise is STAY AWAY from ALS forums. For all sorts of reasons, both because it will make your fear worse and out of respect for the sufferers. You are posting on here, and anxiety forum, which says a lot to me.....
Ok! I’ve checked you out. You’ve had ALS fears as far back as 2018?? You are almost as bad as me!!
It's really taking a toll on me right now... My wrist and hand feels stiff and some movements are restricted on my right arm accompanied with pain in my elbow... It really drives me nuts... :(
So if it’s any consolation, I have the same thing in my left hand. It feels stiff and crampy and odd, even though my strength seems normal. I think - and hope!! - that being worried about ALS makes you hyper aware and notice - or even generate - symptoms that would otherwise never reach your consciousness
Thanks Jojo; it does help... It's so comforting to think that there are other broken people out there like myself... 🌻 I also feel better when I'm not focusing on it, but it's really difficult not to...
Thanks Jojo; it does help... It's so comforting to think that there are other broken people out there like myself... I also feel better when I'm not focusing on it, but it's really difficult not to...
Tell me about it. I am so broken at the moment - and locked into a frenzy of self testing. But we both- you and I - have a history of similar worries.... so from an objective perspective it makes sense that our brains/perceptions are playing a major role here?
I noticed that during your worries in 2018 you suffered from fasciculations ..... can you remember if they came on before or after you started worrying about ALS?
I too am suffering from them.... and have done before. And I am beginning to wonder whether they are actually CAUSED by a worry about ALS (I’m doing some idle research into Functional Neurological Disorders. It’s a bit more healthy, I think, than researching ALS!!!)
Tell me about it. I am so broken at the moment - and locked into a frenzy of self testing. But we both- you and I - have a history of similar worries.... so from an objective perspective it makes sense that our brains/perceptions are playing a major role here?
Yeah it's most certainly due to our brains playing tricks on us, albeit it's difficult to accept while real physical symptoms are present.
I noticed that during your worries in 2018 you suffered from fasciculations ..... can you remember if they came on before or after you started worrying about ALS?
I too am suffering from them.... and have done before. And I am beginning to wonder whether they are actually CAUSED by a worry about ALS (I’m doing some idle research into Functional Neurological Disorders. It’s a bit more healthy, I think, than researching ALS!!!)
I remember being hyper aware of fasciculations after learning that they can be a symptom of neurological disorders. So that's definitely after learning about ALS that I noticed my muscles were twitching. I still feel twitches now, but I'm not as worried about them anymore, especially after learning they they're mostly present after a muscle has atrophied. And even if that's the case, fasciculations happen all the time, and the chances of them being non-benign are extremely low.
I'm more worried about cramps and tight muscles because my brain conjures up thoughts like: "these cramps are a symptom of my muscles overworking, due to them compensating for some smaller muscles that have died. That also explains why I feel slightly clumsy in one hand, since it has only affected some tiny muscles so far".
... Either way, it's all the same; an irrational fear of dying, and it's sooo time consuming :(
Yeah...... if I put my rational head on, the feelings of clumsiness are no different to the fasics really. Very easily conjured by an anxious brain.
Have you read this?
https://www.theguardian.com/news/2016/aug/04/perils-being-your-own-doctor-als
In the time I've been participating on the forum, not one ALS/MND/MS fear has come to fruition. Not. One. Many here have also posted their fears on the ALS forums only to be told to seek professional help. In fact, the main ALS forum refers HAers to this site!
A reply to a member here....
"You need to get help, and evidently not from us. No More Panic (https://www.nomorepanic.co.uk/forumdisplay.php?115-ALS-MND-amp-MS-concerns) is one place to start if you're not ready to see someone on your own. Please do not start another thread here-- it wouldn't be healthy for you."
I hope you as well as the dozens of others here read this and seek help for the real issue. Please do not bother the people on the ALS website (or other serious illness sites) with your irrationality.
FMP
In the time I've been participating on the forum, not one ALS/MND/MS fear has come to fruition. Not. One. Many here have also posted their fears on the ALS forums only to be told to seek professional help. In fact, the main ALS forum refers HAers to this site!
A reply to a member here....
"You need to get help, and evidently not from us. No More Panic (https://www.nomorepanic.co.uk/forumdisplay.php?115-ALS-MND-amp-MS-concerns) is one place to start if you're not ready to see someone on your own. Please do not start another thread here-- it wouldn't be healthy for you."
I hope you as well as the dozens of others here read this and seek help for the real issue. Please do not bother the people on the ALS website (or other serious illness sites) with your irrationality.
FMP
To be fair, FMP, I’m not sure either of us deserve that particular telling off. I’ve never ever joined or posted on an ALS forum. I only post here. Which I recognise is where I belong! As far as I know the same is true for the OP.
Mind you, you are one of my very favourite people on here. So I will forgive you anything! ;-) xxx
To be fair, FMP, I’m not sure either of us deserve that particular telling off. I’ve never ever joined or posted on an ALS forum. I only post here. Which I recognise is where I belong! As far as I know the same is true for the OP.
Mind you, you are one of my very favourite people on here. So I will forgive you anything! ;-) xxx
I appreciate that JoJo and it's not directed at you specifically but at all those that have this fear. I originally came here because there were several HAers on the H&N cancer forum I was part of during my illness. I found several members were posting on that forum. I knew of hypochondria but boy, what I read really opened my eyes. When I saw the ALS posts, out of curiosity, I checked the ALS forum and yep, several members were posting there. Sometimes its easy to see as the poster will use the same screen name and sometimes, the post itself describing the symptoms is the giveaway.
The sticky at the top of the page is taken from that site. While there is a similar post as the OP's on that forum, I'm not implying you or the OP are posting there. It's a general statement directed to all those that have this fear.
I hope you're climbing out the rabbit hole with this bout of it....
Positive thoughts
Have you read this?
https://www.theguardian.com/news/2016/aug/04/perils-being-your-own-doctor-als
I finished reading it yesterday, thanks for sharing.
In the time I've been participating on the forum, not one ALS/MND/MS fear has come to fruition. Not. One. Many here have also posted their fears on the ALS forums only to be told to seek professional help. In fact, the main ALS forum refers HAers to this site!
A reply to a member here....
"You need to get help, and evidently not from us. No More Panic (https://www.nomorepanic.co.uk/forumdisplay.php?115-ALS-MND-amp-MS-concerns) is one place to start if you're not ready to see someone on your own. Please do not start another thread here-- it wouldn't be healthy for you."
I hope you as well as the dozens of others here read this and seek help for the real issue. Please do not bother the people on the ALS website (or other serious illness sites) with your irrationality.
FMP
It's comforting to know that... You know, even though the statistics tell the same, there's always a shadow of doubt in my mind... Thanks for replying 🌼😎
ThrowawayLurker
06-06-21, 16:29
Ok! I’ve checked you out. You’ve had ALS fears as far back as 2018?? You are almost as bad as me!!
I've had them on and off for 15 years. It's awful.
I've had them on and off for 15 years. It's awful.
Man that sucks... Have you ever had shoulder pain that you thought was ALS? Because that's me right now.
Kramze, I have been having a pain in my shoulder for about a month now. I started thinking it was a contributing factor to my hand feeling weird. I am trying range of motion exercises and keeping active the best I can. I have been trying not to go on the ALS forums, but with the consistent calf twitching and weird hand feeling its been hard. I am going to start with today and move forward.
Kramze, I have been having a pain in my shoulder for about a month now. I started thinking it was a contributing factor to my hand feeling weird. I am trying range of motion exercises and keeping active the best I can. I have been trying not to go on the ALS forums, but with the consistent calf twitching and weird hand feeling its been hard. I am going to start with today and move forward.
I feel you. Instead of pushing the doctor for an appointment with a neurologist, I chose to visit a physiotherapist instead. The perceived weakness, stiffness and aching might be there constantly, but staying rational and reading threads from this subforum has kept me from panicking.
Some might argue that staying on these types of forums keeps the flames going, but I find the opposite to be true. The more I read from different people in here, the more I feel at ease... Being able to observe how common HA is, and even the specialized version focusing on ALS, reinforces my rational thoughts and suppresses the symptoms I am feeling as a result.
I'll let everyone know if there's a biological explanation to my symptoms after having visited the physiotherapist, maybe someone reading will find comfort in having similar symptoms with the possibility of a less aggressive diagnosis.
I feel you. Instead of pushing the doctor for an appointment with a neurologist, I chose to visit a physiotherapist instead. The perceived weakness, stiffness and aching might be there constantly, but staying rational and reading threads from this subforum has kept me from panicking.
Some might argue that staying on these types of forums keeps the flames going, but I find the opposite to be true. The more I read from different people in here, the more I feel at ease... Being able to observe how common HA is, and even the specialized version focusing on ALS, reinforces my rational thoughts and suppresses the symptoms I am feeling as a result.
I'll let everyone know if there's a biological explanation to my symptoms after having visited the physiotherapist, maybe someone reading will find comfort in having similar symptoms with the possibility of a less aggressive diagnosis.
I couldn’t agree with this more. I get enormous comfort from seeing the similar symptoms amongst people suffering from als anxiety. Twitches, cramps, perceived weakness..... it’s so common amongst those who fear als it seems
Right so I've been to a physical therapist and he told me that I have probably overworked my arm due to work... He told me to do 4 different exercises and see if it becomes better within 30 days... My arm does feel better overall now, though I still get some weird feelings in it now and then... But now a new symptom has appeared... I've had a feeling that my right ear is clogged, however, I can hear perfectly fine with it... This has been going on for 5 days and now the clogging seems to be subsiding. However, the right side (of course) of my face has become tight around the ear/cheek/eyebrow, and I've noticed that when I smile in front of a mirror, the right side kind of droops... I'm no longer fearing ALS since I seem to be somewhat improving, but now I'm worried that it might be MS...
Also when I speak I feel like I have to focus to avoid mumbling because the right side is drooping a little bit... It's really scary...
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