Fizzing sensation all day...

[Crex]

Hello all,

I have suffered to some degree from restless legs and also arms for some 10 years or so. However since my back ‘lockup’ and subsequent discectomy 6 months ago I have had a bewildering array of what the neurologist calls ‘altered sensations’ mainly in legs but also face and arms . This is fizzing, burning, numbness, cold flushing etc. He has put this all down to rls.

I did have months of bad nights with rls whilst my back was bad but now I am sleeping like a baby but have fizzing / altered sensations in legs and sometimes other parts of my body all day instead! Starts as soon as I get up. Legs not particularly restless, just fizzy/ cold/ numby comes and goes.

Does this chime with anyone else??

Thanks

[Hidden]

Hello again.

I can only repeat more or less what I wrote to you a couple of months ago.

The diagnostic criteria for RLS are

1) An urge to move the legs sometimes accompanied by unpleasant sensations.

2) The urge to move occurs or is worse when sitting or lying down and

3) It is relieved by moving

4) It only occurs or is worse at night.

irlssg.org/diagnostic-criteria

None of those appear to apply to you.

The symptoms you describe could be equally indicate neuropathy. Numbness particularly.

I'm sorry I can't suggest what to about this. Seeing the same neurologist again would seem to be pointless.

[Crex in reply to Hidden]

Many thanks again Manerva. I think when I posted before these symptoms seemed to be happening at the same time as my RLS and so thought they were associated but now they seem to be separate. I think I have both conditions ie RLS and peripheral neuropathy ... ☹️

[Hidden in reply to Crex]

Yes, I didn't doubt that you have RLS, but these "new" symptoms aren't consistent with RLS.

They may not be peripheral neuropathy either, it's more likely to be spinal. There again, however, it may be both.

As I say, I'm not sure what you can do about it, I would suggest consulting a neurologist, but if it's the same one you may get the same answer.

When I had spinal problems my GP prescribed a course of a NSAID and it worked!

[Crex in reply to Hidden]

Thank you again. I am with another neurologist now and he has been a lot better in terms of listening to me, but at the time I seemed to be improving so he and I assumed it was just recovery from the operation. Of course inevitably soon after my consultation, I went downhill again. I think you're right that this is probably connected with my spine though MRI not showing anything and inflammation markers not showing anything either. He is however sending me for a head scan to 'cover all bases' . No need to reply again - thanks.

[Micronguy]

Hi Crex I can associate with your fizzing etc drive's me made as well, mine tends to be more manageable during the day properly due to any kind of activity but totally uncontolable at night. As well as intense fizzing I have this intense cold sensation I cannot get my feet and lower legs warm they are warm to the touch but cold internally. Unfortunatley I haven't found any way of controlling either they are a law unto themselves.

[Crex in reply to Micronguy]

It’s exhausting isn’t it though mine now worse in daytime... think it is spine related. But there seems no rhyme or reason to what makes it worse / better and I can get no guidance from neurologist or physios as to whether I should exercise or rest... basically they just don’t know..sigh...

[Munroist]

Hi Crex, like others who have replied I suspect you have some neural pain on top of RLS. I had a back issue a couple of years ago which left me with symptoms very similar to yours.

At the same sort of time my RLS went from something which I hadn't realised was RLS and I thought was just bad sleeping, to a much more recognisable RLS using the criteria Manerva has supplied.

Looking back I've had indications that I had RLS in the past so I don't think the back issues caused it but I also feel there may be some connection between nerve sensitivity/neuropathy/altered sensations and RLS. Certainly both can be treated with pregabalin, and after I used pregabalin for a year, my RLS seemed to get worse when I finally came off it. Until the medical establishment works out what's going on however this is just my speculation.

[Munroist in reply to Munroist]

And on a slightly more positive note I have found that over time the neuropathy/altered sensations "settles" as your body heals, becomes more familiar and less worrying and even reduces to the extent that it now rarely interferes with a fairly active lifestyle. There are certain movements and activities which can set it off but I'm aware of those now and it's not too hard to steer round them. You need to keep moving within limits, pace yourself so you don't overdo it and set yourself back and with some luck you will find yourself more at ease. All the best.

[Crex in reply to Munroist]

Ah thanks so much everyone. It’s such a comfort to hear from others and know ones not alone. I just get so dispirited when I seem to be going downhill again with the nerve issues. The pain I can deal with psychologically but these nerve symptoms I really worry about. Really helps to know that it may improve long term. Don’t expect to get back to any fell walking but that’s ok. Lucky to have done a lot in the past . 😊

[Munroist in reply to Crex]

I'd say just hang in there and take it steady but don't give up. Following my back issues with discs pressuring the nerves and accompanying altered sensations, somebody did a slump test on me and sent my nerves through the roof - face tingles, groin pains, cold and hot shooting sensations - you run out of vocabulary to describe them. At that point I was unable to walk round the block without worrying pain and sensations and huge anxiety. However an MRI, careful pacing and some rehabilitation help from NHS pain clinic helped build confidence that I was fundamentally OK as well as nearly a year on pregabalin to reduce the sensations and anxiety at the end of which I was doing multi day walks and 3000 foot hills. This year I did 8 Munros comfortably although I've since found it really fires up my RLS but overall I'm not in a bad place and I don't think I'm atypical based on conversations with health practitioners during that year. Even with something like disc and spine, your body can heal and combined with good posture/alignment, careful exercise and positive attitude it can come good. My experience is that walking is the single most important exercise we can do and has so many benefits. If you can do without pregabalin I'd suggest you stay off it but it did help me break the cycle of anxiety/stress/pain . Good luck

[Crex in reply to Munroist]

Thanks so much. Yes I have face tingles too! Also tongue chest arms and groin on occasions. Dagger pains and nerve ‘pings’ ... as you say you run out of words. That’s really interesting. You’re the first person or health practitioner I’ve spoken too who recognises this. My theory is that our whole spines have had a shock that takes time to get over...I’m taking pregabalin but aiming to reduce the dose...

So glad to hear you’ve got up some Munros since then. I’m 65 so not aiming for too much but would be pleased to get up a minor Cumbrian fell sometime. Funnily enough sorting through some old pictures today I came across one we took from the top of Beinn Alligin (1990!)....