Question re soreness/stifness

[VWPGSY]

Dear All

This is my third post here. As you might recall, I lost my Dad to ALS last year (he passed away 2 days before my wedding). I remain sincerely in awe of the people who live bravely with ALS and especially those who spend their precious time contributing to this forum.

Since my Dad's passing, I've had "symptoms" which thanks to 2 x neuro exams and 1 x EMG have mostly put 95% of my worries to the side and I've taken comfort from the fact it's highly likely I am one of the fortunate people with BFS (benign fasc. syndrome).

I have been prescribed beta blockers by my GP for the twitching - funny enough, ever since I've taken them, the twitching has moved from being in one location (upper left body) to all over my body.

My question:

I am trying to keep up with exercise etc and I find myself getting sore and stiff in the same place I twitch - which members of this forum have kindly pointed out is common.

The thing that bothers me (I have given up being worried about twitching) is now the stiffness/soreness I have in my left upper pectoral muscle - it's stiff and whether I do exercise or not.

I just wondered if anyone could clarify if this is normal, i.e. to be stiff regardless of exercise (i.e. I might not do anything for 3 or 4 weeks and my muscle will still be stiff). I know the stickies say soreness/pain points away from ALS, but I've read in many places that stiffness is a presenting symptom at the initial stages.

If anyone could please clarify or provide any insights I'd be most grateful - there is still 5% of me that gets worried - it doesn't help that I think of my Dad all the time, who I dearly miss.

And whilst I'm here, for those that twitch, please don't let it worry you - 99.999999% it's perfectly ok (albeit very annoying at times).

Thank you to anyone who responds to my query.

 

[Atsugi]

In ALS, joint stiffness and segment soreness results from being immobile for days and weeks after you're paralyzed.

 

[VWPGSY]

Thank you Atsugi for your reply.

I guess the reason I mention it (read: worry about it) is that some of the websites (United Kingdom's NHS - National Health Service) talks of stiffness as a presenting symptom.

 

[Nikki J]

I just looked at the NHS site. It does not list stiffness as a presenting symptom rather as something that occurs with advancing disease as Mike said. Perhaps you read it somewhere else? The NHS descriptions were simple and seemed quite accurate
Copied from the NHS site
Advanced symptoms
As motor neurone disease becomes more advanced, the differences between the various types of disease are less noticeable as more parts and functions of the body are affected. The rate at which the condition spreads varies, but generally remains the same for an individual (that is, it doesn't speed up, but doesn't slow down either).
Muscular symptoms
The limbs become gradually weaker and the muscles in the limbs may appear progressively wasted. As a result, the person will find it increasingly difficult to move the affected limbs.
The muscles may also become stiff. This is known as spasticity. Both muscle wasting and stiffness can also cause joint aches and pains.

 

[VWPGSY]

Please accept my sincere apologies for the erroneous reference re the NHS site, it was not intentional and sorry to waste your time for having to go and look for yourself.

I have read about stiffness here (and a few other places):

The ALS Association

Apologies again for the erroneous reference re NHS. I'm sorry, it wasn't on purpose - I read so much online, it gets a bit crazy.

 

[Nikki J]

The reference you linked to is referring specifically to spasticity which is not stiffness in the traditional sense. I am lower motor neuron dominant so I can't explain it very well but I don't think it is what you are describing at all. I do hope you can let go of the 5 percent of worry. I do understand all too well the trauma of losing family to this disease

 

[VWPGSY]

Thanks Nikki, sending you my sincere best wishes and thank you for making the effort to respond to me and to all the other posts on this forum, it's invaluable if you don't mind me saying.