ALS health anxiety

[Ekr4eva 19]

Where do I even begin. 39 year old female here who was diagnosed with anxiety and panic at age 13. While that’s all fine and dandy, I have developed health anxiety after the births of my 3 children. After each child, it got exceptionally worse. And here we are now. I don’t just have health anxiety, I have an extreme fear of dying and leaving my children motherless.

I am currently down a rabbit hole of hell. About a month ago I started getting leg cramps, with twitching to soon follow. It’s all over my legs and now has spread to other parts of my body. Of course the first thing Dr. Google tells me is that twitching/pain is one of the first signs of ALS. I am 100 percent consumed into thinking this is what I have. And am just waiting to start losing muscle strength. It is an awful way I am living, and I’m so scared. I know I need to stay off the health net, but I keep finding myself looking for a loophole to explain why my symptoms have presented. I have seen my GP and got blood tests all coming back normal. Still waiting on Mercury though. I have an appt with my neuro next month and hoping to get an EMG?!!

Please help talk me off this ledge. Is it possible I have ALS at age 39/female with no family history? I know you aren’t doctors, but I also know you have the wisdom that can help calm my nerves.

Thank you so much for your time. It is so greatly appreciated.

[TenLettersRap 22]

twitching and pain is actually NOT one of the first signs of ALS that is one of the biggest misconceptions spread on google. I thought i had ALS also...i still think i have other things but im certain after my neuro told me that i dont have als and i have for 5 months now had twitching in my legs, hands, feet, back, stomach, lips, eyes, head. coupled with fatigue, muscle aches and soreness and exercise intolerance.

[Holls 1499]

You don't have als. I'm a former als worrier.. I have three children and I understand the fear you have.. my anxiety shot like a rocket after they were born..my Dr finally told me it's Bec of my hormones trying to level back out and that it's normal.. they helped me a lot.. realizing the thoughts I had weren't real. 

Twitching in als is after muscle death.. you would already know you had something serious wrong. I twitched and buzzed... You don't have als. Just anxiety. 

[Jgriffin 32]

5 hours ago, Ekr4eva said:

Where do I even begin. 39 year old female here who was diagnosed with anxiety and panic at age 13. While that’s all fine and dandy, I have developed health anxiety after the births of my 3 children. After each child, it got exceptionally worse. And here we are now. I don’t just have health anxiety, I have an extreme fear of dying and leaving my children motherless.

I am currently down a rabbit hole of hell. About a month ago I started getting leg cramps, with twitching to soon follow. It’s all over my legs and now has spread to other parts of my body. Of course the first thing Dr. Google tells me is that twitching/pain is one of the first signs of ALS. I am 100 percent consumed into thinking this is what I have. And am just waiting to start losing muscle strength. It is an awful way I am living, and I’m so scared. I know I need to stay off the health net, but I keep finding myself looking for a loophole to explain why my symptoms have presented. I have seen my GP and got blood tests all coming back normal. Still waiting on Mercury though. I have an appt with my neuro next month and hoping to get an EMG?!!

Please help talk me off this ledge. Is it possible I have ALS at age 39/female with no family history? I know you aren’t doctors, but I also know you have the wisdom that can help calm my nerves.

Thank you so much for your time. It is so greatly appreciated.

On this forum type in twitching. You'll see how common with anxiety it is

[Ekr4eva 19]

Thank you @TenLettersRap @Holls and @Jgriffin for your responses! I didn’t get an email that anyone had even replied to my post, so I apologize for not thanking you sooner. I have had a good couple of days lately, but the past day or two I have had a pain in my left shoulder/bicep/tricep. And obviously the body twitching. So of course my mind is now racing that my unexplained arm pain is my muscle breaking down. I keep raising things above my head to make sure I still have the strength. I am in a bad way today and it’s consuming the crap out of me. Please help!!

[Ekr4eva 19]

@Mark G and @Gilly seem super educated on this subject. Could you please help guide me?

[Jgriffin 32]

1 hour ago, Ekr4eva said:

Thank you @TenLettersRap @Holls and @Jgriffin for your responses! I didn’t get an email that anyone had even replied to my post, so I apologize for not thanking you sooner. I have had a good couple of days lately, but the past day or two I have had a pain in my left shoulder/bicep/tricep. And obviously the body twitching. So of course my mind is now racing that my unexplained arm pain is my muscle breaking down. I keep raising things above my head to make sure I still have the strength. I am in a bad way today and it’s consuming the crap out of me. Please 

Just because you think your arm pain is unexplained doesn't mean it is. My shoulder hurt for days because I woke up realizing I was sleeping way weird. Had I had not woke up and realized it I wouldn't know why my shoulder hurt. Maybe it got sore from something you did and at the time was bothersome but once the muscle relaxed you felt sore

[Alex 8]

2 hours ago, Jgriffin said:

Just because you think your arm pain is unexplained doesn't mean it is. My shoulder hurt for days because I woke up realizing I was sleeping way weird. Had I had not woke up and realized it I wouldn't know why my shoulder hurt. Maybe it got sore from something you did and at the time was bothersome but once the muscle relaxed you felt sore

I agree! And on top of that I think since we have so much anxiety going on we are more tense therefore more susceptible to muscle injury and pain. I have aches and pains everywhere, hands, feet, knees, back,... Drives me nuts. Oh and I’ve had the muscle twitches all over body as well.

Meditation definitely helps, I type in Yoga Nidra on YouTube and listen to the 20-30 minute sessions. If you do it at night, it’s like a sleeping pill! Better than melatonin:)

[Ekr4eva 19]

It’s just strange that I woke up a couple days and have this pain. I’m beginning to think it’s now twitching more in that spot. I just can’t stop obsessing over the sensation. Especially the fact that ALS progresses very quickly. How do I know this isn’t a very early symptom????

[TenLettersRap 22]

because its not, an early sign is foot drop or sudden inability to use your hand, and even then, thats not 100% true because even pinched nerves or herniated discs can cause those symptoms

[Ekr4eva 19]

@TenLettersRapHow can you be so sure???

[Alex 8]

36 minutes ago, Ekr4eva said:

It’s just strange that I woke up a couple days and have this pain. I’m beginning to think it’s now twitching more in that spot. I just can’t stop obsessing over the sensation. Especially the fact that ALS progresses very quickly. How do I know this isn’t a very early symptom????

I know how you feel, when you first get them they are crazy making. I had my left hand finger twitch for three months, stop for two and just started again. Not only that but I get twitches all over my body especially the calves... 

I’m getting more used to these twitches now and they seem to have substantially subsided compared to a couple of months ago.

This site has great info on anxiety and here’s a link on twitches:

 https://www.anxietycentre.com/anxiety-symptoms/muscle-twitching.shtml

[TenLettersRap 22]

and trust me when you have ALS anxiety you start to think of less severe issues that nobody else would want as an absolute blessing. Once you get over the anxiety it will humble you beyond belief, i used to be on the opposite spectrum of depression and couldnt understand why im even alive and going through the motions of day to day life. once i started having als anxiety my position changed from hoping i die to not wanting to die and once i got over the fear of als im starting to really appreciate every day i wake up. i still have my twitches and muacle aches but its helping me change my life in a way because i've started a paleo diet to help repair my body and get my brain into a better place

[TenLettersRap 22]

11 minutes ago, Ekr4eva said:

@TenLettersRapHow can you be so sure???

im sure because i've had worse symptoms than you and gone through so much testing with my neurologist, PCP, and ER visits. There is no way its ALS from any doctor i've seen..they almost laugh at me when i say i think i still have it.

[TenLettersRap 22]

im practically a doctor myself with all the money i spent visiting them and soaking up their information, its like i paid tuition for medical school

[Ekr4eva 19]

Thank you @Alex for that link!! Any sort of new information for justification is reassuring. And thank you @TenLettersRap!! I sometimes feel the same way about the finance aspect. I have gotten MRI’s, CT scans, Stress Echos all for the varying “illnesses” I have had over the years. But for some reason this pain and twitching has really put me in a tailspin. I am assuming because it’s the most grave disease one could have. Is it possible i truly have this? I am praying I can get my neuro appointment pushed up to give me some sort of clarity in my head. This has been a major flare up and I can’t seem to talk myself off the ledge. But people like you guys helps so much. I know I am not alone. So for that I am eternally grateful.

[Alex 8]

You’re absolutely welcome! It’s definitely a bit of an uphill battle getting over anxiety and it’s physical symptoms. But once you can allow your body to calm down long enough, the physical symptoms will eventually subside.  

Please keep us posted on your doctors appointment:)

[Ekr4eva 19]

Help! I can’t sleep. My mind is racing. I am convinced my muscle pain is the beginning stages of ALS. I am losing it.

[Alex 8]

3 hours ago, Ekr4eva said:

Help! I can’t sleep. My mind is racing. I am convinced my muscle pain is the beginning stages of ALS. I am losing it.

Try to relax, there is no pain in early symptoms of the disease...

[otten 23]

One of the lies health anxiety tells us that every sensation needs an explanation. Sometimes bodies are just noisy.

My therapist encouraged me to use a reasonable person test for symptoms. Would a reasonable person without health anxiety think anything of the ‘symptom’? In the case of your muscle pain the answer is no.

Can I offer some advice? Stop going immediately  to the doctor when a new ‘symptom’ arises. Doctors are trained to find problems so if you go to the doctor with a ‘symptom’ they are going to start looking for a cause which will ramp up your anxiety. Again use the reasonable person test to determine if something actually needs investigating. Reassurance seeking doesn’t work. You cannot get reassurance for HA externally. You have to find it internally.  

[K_love 1]

@Ekr4eva how are you holding up? Have you found some relief from your worries? As a fellow HA and ALS anxiety sufferer I am hoping that you have found some peace. I too am dealing with body pain in my shoulders, arms, wrist and feet. I battle everyday with the ping pong thoughts of I’m dying to all of this is anxiety. You are not alone and as long as we keep helping each other through this we can survive. 

[Sommer J 0]

I’m also struggling with a als fear. I have twitching and cramps as well as trembling or shaking. Does anyone know how common it is with people with als to have tremors? I’m so worried. 

[AndrewF 37]

On 5/30/2019 at 1:43 AM, Sommer J said:

I’m also struggling with a als fear. I have twitching and cramps as well as trembling or shaking. Does anyone know how common it is with people with als to have tremors? I’m so worried. 

Again, ALS is a disease of FAILING, not FEELING.  My uncle apparently has lost the ability to grasp a tennis racket, and hand weakness, and as been to numerous doctors.  They worked him up for ALS, and he was told by an expert that even this is not ALS.  If you're just twitching and have cramps, without weakness that makes you fail doing things, you do not have ALS and need to stop worrying about that very uncommon disease.  

[Alex 8]

On 5/29/2019 at 10:43 PM, Sommer J said:

I’m also struggling with a als fear. I have twitching and cramps as well as trembling or shaking. Does anyone know how common it is with people with als to have tremors? I’m so worried. 

I had all the symptoms you talk about and they are substantially subsiding thank god!

I went to my Neurologist twice, she did a whole bunch on physical tests and told me I was making very bad use of my time by worrying about having ALS or MS. 

After I worked in calming myself down for a few months with meditation, yoga, eating and sleeping 7+ hrs per night, I am finally feeling better. The “inner vibrations” (tremors) are almost gone and so is the twitching and other physical symptoms I had.