Another ALS fear post

[poppy77]

I was taking a light dose (10mg) of Amiltrypline(sp?) for a week or so two weeks back but came off it due to very crappy side effects (generally feeling completely dizzy and zoned out for most of the day heartburn etc.). After I came off it, I had a few days of occasional pins and needles in my feet (which I've since read can be a withdrawal side effect). I've of course wound myself up worrying about things like MS. I am constantly 'checking' for odd feelings/sensations round my body. I xan never give my mind a rest. The pins and needles have gone now, they were always temporary anyway, but I have woken up twice this week with a numb hand (after leaning on it probably) which has resolved after I've shaken it. I'm now getting into the habit/cycle of testing out my hand strength and foot strength, imaginjng on/off numbness, testing my eye sight, Googling (a lot...which I promised my husband I wouldn't do) and generally sending myself mad. I'm now starting to panic about the doctors being closed over Christmas. I keep thinking, what if this isn't just anxiety and worrying more.

I'm falling down the rabbit hole and need to get out!

[pulisa]

You have the power to decide whether you continue to Google or not. You promised your husband you wouldn't because you and he knows what will happen... and it has...

You need to take back control now. Christmas is incredibly stressful. All this self-monitoring is on a par with Googling and will keep your MS fears alive and kicking. Neurological symptoms are so common with anxiety yet feel so real..

You need to give yourself a mental break-is your husband supportive? Can he help you in any way?

[poppy77]

Thanks Puilsa

[poppy77]

I have been suffering from health anxiety for a couple of years now but have recently gone down the ALS rabbit hole.

A few weeks ago, I started going to the gym intensely after not doing much exercise for years. I'm doing Slimming World and wanted to up my exercise levels, so I started doing a couple of days of intense exercise classes. For example, two hours of Body Attack and Body Combat. A day in which I did an intense vinyasa yoga class, followed by a double cardio class day. A lot of the classes involved using weights, stretching leg muscles, lunges, power squats, star jumps etc.

I found that a day or so after doing the classes, I would get random twitches in my leg muscles (calf, knee area, thigh, bum) and sometimes arm. They were never like the twitching videos you get when you Google. More like one isolated twitch and then gone. Never when I was moving around. Only noticeable when relaxing or sitting or lying down. They do seem to be less and less each day but I am still occasionally getting them - although, they have all but disappeared on the right leg (very occasional) but still occasionally on the left which was not the most prominent 'twitch' one to start with.

I've been doing lots of strength tests like standing on one leg on my toes, squats, lunges, balancing etc. which seems fine and my muscles actually seem more toned and stronger than usual.

I did, however, Google (I know I know), and have freaked myself out that these random twitches (like I say one twitch every so often - not 'twitching' per se) is the early onset of the dreaded condition mentioned above. I am really beginning to feel myself starting to spiral.

[KK77]

Intense physical activity along with anxiety/stress is the likely cause of your symptoms.

You know the ALS rabbit hole is very deep, so turn back while you can!

[Elen]

Hi

This is just a courtesy reply to let you know that your thread was merged with another of your threads.

Please when posting on similar topics add it onto your previous post rather than starting a new one.

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

Elen

[poppy77]

Thanks Elen, I am trying to investigate whether I can go private to get CBT in my area. Basically it's pretty much impossible to get it on the NHS in my area. I hear it's pretty expensive but it might be worth it if I can crack my HA issues.

The last month has been incredibly stressful with my sister being hospitalised with Guille Barre syndrome, my 101year old Grandma dying and various other stuff (loads of extra stuff being dumped on me at work because others have left...ironically with stress issues).

I'm trying to get myself physically healthy. As I've completed my family and just turned 41, I really want to be at tip top condition going into my 40s. I've lost over a stone on Slimming World in 8 weeks and have just over a stone to go to reach my goal of 9 stone. I joined the gym and have hit it pretty hard after basically not doing any gym for years.

I just really need to get my mental health sorted. I feel a bit overwhelmed at the moment . I'm trying my best and I'm letting everyone down with this Googling and feeling stressed. I find it difficult to ignore little sensations/changes in my body and have a habit of catastrophising in my mind. One of my skill set is research which plays against me in circumstances like this with the HA habit of incessantly Googling. I know it's bad to do this but it's like an addiction. I'm sure CBT would help, but this fear at the moment is preoccupying me.

[KK77]

Intense physical activity along with anxiety/stress is the likely cause of your symptoms.

You know the ALS rabbit hole is very deep, so turn back while you can!

And DON'T Google! :lac:

[NancyW]

I did, however, Google (I know I know), and have freaked myself out

"(I know I know)" what does that even mean? You ignore everyone saying DON'T GOOGLE and then you come here to be calmed down?


How about googling .. how to STOP googling?

[poppy77]

Thanks Nancy, that's super supportive. I think it's perfectly obvious what I mean. I am admitting that I'm in the wrong and I know I need to go to CBT to work on my issues. I have diagnosed health anxiety issues which I am trying to work on. However, it is a process. One that I have been working on. Unfortunately, as I've mentioned, I have had stresses lately contributing to things. People don't come on health anxiety forums asking for advice/help if they don't have health anxiety isdues.

[NancyW]

Thanks Nancy, that's super supportive. I think it's perfectly obvious what I mean. I am admitting that I'm in the wrong and I know I need to go to CBT to work on my issues. I have diagnosed health anxiety issues which I am trying to work on. However, it is a process. One that I have been working on. Unfortunately, as I've mentioned, I have had stresses lately contributing to things. People don't come on health anxiety forums asking for advice/help if they don't have health anxiety isdues.

Googling or not Googling is 100% in your control.

[KK77]

People don't come on health anxiety forums asking for advice/help if they don't have health anxiety isdues.

Yet you ignored both my posts. What kind of "advice/help" do you want? Or is it just reassurance?

[poppy77]

I suppose, some reassurance that others undergoing similar stresses have had had a similar experience with no bad outcome. I know it's the classic reassurance pattern which I need to get out of. To be fair, apart from December onwards (2018), I've been a lot better at controlling my HA. I think recent stresses have just got to me. Plus, until I fully get the dragon (as Fishmanpa calls it) under control, it's hard not to still have the, 'what if..' and 'just because I've got HA doesn't mean I'm immune' type worries. I suppose I'm on here looking for a sympathetic ear as I don't want to worry my husband.

[MyNameIsTerry]

To be fair poppy has been under a lot of stress recently so it's to be expected her anxiety is raised and obsessive-compulsions are harder to escape. When I was in the worst of my OCD I went each day doing the same things (hundreds of things) in order and at the right times and it took a long time to work my way out of that. Whilst it's true we can choose, it doesn't always feel that way.

Poppy, it's not about stopping the "what if", it's about not responding to it just as it is with intrusive thoughts. The mind just works that way.

So, are you saying you have quite recently (a couple of months) started exercising and just started a higher intensity workout? If so, and you say research is often a negative trait in you, then those researching skills are just biased towards the negative because if you put in a Google search for something like this I would have expected a whole load of hits about post exercise fatigue (DOMS) and how this is the bodies way of responding. Just like how lactic acid builds up in the muscles to stop you damaging your body by excess stress you get periods of DOMS to tell you not to keep pushing as the body is actually trying to respond to greater than expected loads by rebuilding tissue and building new muscle to take the strain. Although with DOMS it can be safe to exercise but obviously there are limits.

If you are find yourself weaker than normal, it's likely this. Anyone who has lifted weights has experienced it. It's especially prevalent in new exercisers because you aren't used to the extra stress.

Consider it a bit like being off work a few months then starting a manual labour job or switching from an inactive to active job. Those first weeks you are knackered.

Anxiety, I find, makes this all harder to due to the strain on the body. Some find exercise greatly helps and others struggle with the aftermath. I'm the latter.

But ALS is the last possibility on the list and I'm sure you know this. Think about how you have a cause-effect relationship between working out and feeling like this. And why would ALS only present from this and no other exercising or just as normal as it does in people who don't even exercise.

[poppy77]

Thank you so much for your kind reply Terry. Yes, my anxiety is definitely up at the moment and OCD thinking patterns linked with catastrophic thinking in regards to heath start up with me when I'm feeling like this or when overwhelmed.

I actually don't have any weakness (at least yet anyway) or even feelings of it. It's just the random, occasional single muscle twitches that had sent me to Google and the results that came up frightened me.

I'm definitely going to investigate if I can afford CBT and/or possibly go back on meds. I only went on Sertraline for 9 months in 2016 after post natal health anxiety (the Amiltrypline I took for a week in December was for muscle pain in my neck not for anxiety but I went off it due to crappy side effects). Maybe I need to go back on some kind if anti Ds.

[pulisa]

Maybe you don't though. I know only too well how stress exacerbates OCD behaviours but please don't Google. If you can do one thing...don't Google your perceived symptoms. You will only end up distressed and worse off. It never helps,only hinders...Try and see if you can access some more therapy if it helped before?

How is your sister? I hope she is getting better? I know it will be a long road ahead for her though.

[MyNameIsTerry]

I suspect that unless there are concerns you are getting worse in general that a GP might want to have you in the surgery a bit more often to keep an eye on you until you are through this period of high stress.

Anxiety puts stress on the CNS, as we all know. So does exercise. Put both together and it's not unlikely to see limbs flying out in bed more.

[poppy77]

Hi! Thanks everyone for your responses.

I had a really bad night on Sunday where I literally was so anxious, I could not sleep all night, heart racing, calf muscle twitching on and off for two hours, throwing up with fear, crying etc.

I went to the doctors with my dad on Monday (I am not good at really listening to what the doctors are really saying when I'm in this high an anxiety state). I explained my concerns and the amount of physical exercise I've been doing plus all the stress I've been under. He did a very thorough physical examination, testing nerves, muscles and reflexes and said I passed all tests with flying colours and that my muscles were very strong and toned from the gym.

He said CBT is a good idea and that he does not want me to go on antiDs at the moment. He thinks stress and anxiety plus overdoing things has caused this and that he is not concerned that it is a neurological or muscle issue. I have to check in with him in a month to discuss how I'm feeling.

I am going to trust the doctor as much as I can (being a health anxiety sufferer) and try to avoid thinking about yhe twitches and keep active. Obviously I have had no in depth neurological tests done in hospitals but I'm going to trust that the doctor would no of warning signs and when to refer on further. I just have to learn to trust.

I have made a decision to not Google symptoms on rhe internet at all now. This will probably have to nbe a lifetime decision. Like an alcoholic and a tiny amount of drink, I cannot handle a small amount of medical Googling. It just is not helpful to my mental state. I am not the sort of person who can just go online and quickly look something up and be satisfied. I've even put a 'How dare you think your medical googling is worth the same as my medical degree' as my screensaver to stop me if I feel the urge.

So, this will probably include going on this forum. Seeing people's posts, including a recent post dealing with the same issues as me, is just too much of a trigger for me.

So, thank you for your kind support.

xxx

[MyNameIsTerry]

That's good to hear, poppy. They will help you to change your thoughts towards Googling anyway as avoiding it out of fear isn't the way but changing yourself to not be afraid and to be objective helps you through it so you can use it in the future. Just like with supermarkets for some, going outside for others. But when things are so bad sometimes we need to do some avoidance as we just can't take any further triggers.

I did wonder if the doctor would prefer to monitor given you have a very stressful time in your life right now and unless he/deemed it essential to get more severe anxiety down now they might watch it reduce naturally as you work your way through this awful time. My GP had that approach too.

So, and I know you still have so much on your plate, it is time to start looking at calming your body & mind down with things like relaxation, distraction, etc. If you can reduce your overall levels of anxiety I believe you will find your obsessive-compulsive style thinking reduce with it.

There is nothing wrong with moral support no matter what our age. We would be sitting with a loved one in a hospital if we had to go in many a time so why not the GP? I needed my dad with me when I was at my worst. And it is hard to get it all across when you are struggling just sitting there. Doctors understand that.