UKC

As per the covid / flu jab thread I'm back on antihistamines and as I said my breathing and energy levels are vastly improved.

What I didn't mention on that thread is at the same time as starting back on the pills the Mrs gave me a salt pipe that I have used for 10 minutes every night and for the first time in 20 odd years I'm not coughing like a 40 a day smoker first thing in the morning (I have never smoked). I don't know if it's helping the long covid but it's certainly cut down the amount of crap I cough up every day.

I also started using a power breather, it's a medium resistance one and 8 days ago I struggled to do 10 breaths on level 1, tonight I did 20 breaths on level 3 followed by to breaths on level 4.

I still run out of breath at work and walking the dogs but there is an improvement. 

I know the popular advice for long covid is to rest and take it easy but I have done that for 11 months and got nowhere, its time to step it up and try kicking its arse, so far it seems to be working. 

Let us know how you fare. I don't get the breathlessness so much as the fatigue - like I've already done a big walk before I even get going. What is a salt pipe (or a power breather)?

A salt pipe is some hippy crap in my opinion but it has certainly cut down on the crap in my lungs, its a ceramic pot full of rock salt that you breath through.

A power breather is an adjustable sprung loaded device that you breath in through, you have to overcome the spring pressure that holds the inlet valve closed, in 1 week I have gone from struggling at 1 to struggling at 4.

Really glad you're seeing positive improvements and thankyou for sharing.

I find there is a very fine line between resting and overdoing it. Totally agree that you need to try and remain active, but if I push too hard my body crashes, which is utterly miserable and can take over a week to recover from.

This, push it but in a slow and gradual way. Nothing worse than a shite week that makes you feel like you've been bounced back months

We each have to do what is right for us, you have it much worse then I do and probably need to be far more careful than I'm being. My entire life has been bull in a China shop and its way past time I applied that to covid. If I go to far and back slide I will know where my limit is, it sounds like you know where your limit is and hopefully with gentel pushing of said limit you can improve. 

Totally agree about knowing your limits, my point was to try not to push too far beyond them and cause a relapse. 

Find what you can sustain daily over a week, be that a ten minute dog walk or a 10km run. Don't go boom over the weekend and then need all week to recover, daily lower level activity is much kinder to the body.

Since I've started trying to do this life has been much easier mentally. Yes I miss the big days out, but getting out daily for something is better than pushing through and then needing a day or more in bed to recover and actually means that I am now doing more overall.

So much of this long covid fatigue sounds like CFS/ME fatigue (of which I have too much family experience, my wife's long covid is like a lesser reoccurrence of her CFS/ME), I suspect they're very similar or different manifestations of the same thing.

My illustration of this is that most of us are using Duracells whilst those with fatigue are using cheapo non-alkaline batteries. You "just" (laughable use of the word) need to manage your usage to not run the crap battery flat before being able to recharge.

So, so much simpler to say than do.

Great to hear you’re improving. My wife has Long Covid (or maybe it’s Chronic Fatigue) and although she is improving very slowly I’m interested in what antihistamines can do. Don’t they make you drowsy, which would surely make the fatigue even worse?

I have not noticed them making me drowsy and I have been taking them every summer for about 5 years. Maybe they do but compared to the fatigue of not taking them I might not notice a slight drowsiness now but I certainly havnt noticed it using they for hay-fever. 

I have a pal who suffers from really bad CFS and he was saying the symptoms I describe are identical but milder than his. 

A lot of LC sufferers are showing classic ME and/or Fibromyalgia symptoms. I have spoken to my doctor about ME but they refuse to diagnose as 'its Long Covid'. 

The best help I've had was from the ME/CFS service and generally their guidance on pacing and managing fatigue seems to work for most LC sufferers. 

The battery description is a good one. I was told no matter how much I rest I can never get mine to charge past (say) 20%, so I needed to learn to use my energy carefully, however extra rest in anticipation of activity was pointless.

Part of the issue with CFS/ME I felt was that it's much less likely to happen to lazy farts like me who can relax at the drop of a hat, much more likely to happen to people who are always, doing, doing, doing (the wife should step up here) and don't quite understand what relax actually means.

This of course means that your affected population are exactly the kind of people who find it difficult to pace, difficult to prioritize periods of inactivity rather than "I'll just get that done as well".

Have a look at the Lightning Process, a form of neuro-linguistic programming. I was never totally convinced that their explanation of what was going on was completely correct, but I've pragmatically seen it work, at which point who cares whether the explanation's correct. In a nutshell it says that certain ways of thinking, etc make your brain produce excess hormones which adversely affect you, i.e. those neural pathways are tied up with the excess hormone production. The process helps you to create alternative neural pathways which allows the ones you don't want to wither away. Seems a bit whacko but stunningly effective when it works. Not cheap but a fixed rather than open-ended cost.

In the interests of fairness, only right to note that the new NICE guidelines on ME/CFS specifically say that GPs should *not* offer the Lightning Process to ME patients:

https://www.nice.org.uk/guidance/ng206  (section 1.12.27)

https://www.nice.org.uk/guidance/ng206/chapter/rationale-and-impact#why-the...

I knew about the NICE guidance (although I'd forgotten). I think the secrecy is really about protecting it commercially. If they only charged £100 they'd go out of business, and it would effectively be lost unless it was adopted across the NHS.

Two members of my family have significantly benefitted from it (believe me I'm a sceptic but with my own eyes I've seen the difference it made in less than a week) and we know several others who have also benefitted. Only know one or two others who haven't but I actually think it's a bit self-selecting in that those who it won't help tend not to go for it - weird as that may sound.

Which leads me onto... I actually suspect that CFS/ME is several conditions that have enough common symptoms to (at the moment) be treated as one thing, and that the LP only really helps one of those conditions and may be bad for the others. If I'm right, it means that it's important to be able to identify which is which so that the most effective/appropriate therapy can be used.

A lot of people with CFS/ME end up institutionalised with their ailments; understandably but sadly scared to try anything different in case it makes things even worse, or affects their benefits which they may now be dependent on (DLA was a bitch and the PIP is its bastard spawn).

And I was really disgusted by the CFS/ME charities, especially the kiddy ones. Firstly, why do you need more than one charity doing the same thing - because there are too many people who want to be the big "voice" or whatever. Secondly, why did they only produce things to assist sufferers (not a bad thing of course). The glaring omission was exit polls - no attempt to find out why people who left the charity's numbers had left, were they better? what did they feel had made them better? No attempt to actually find out what "cured" CFS/ME sufferers.

Sorry about that little rant ☹

I'm sceptical about the idea of a salt pipe but I do remember seeing something about the atmosphere in salt mines being good for lung health.

I'm just as sceptical but after 11 months of breathing difficulties I'm willing to try it. My Mrs who has severe asthma swears by the one she got but she is also a big fan of alternative stuff. 

Do you too have the "but if it's diluted to homeopathic standards then there's diddly squat chance of there being an actual active molecule in there" argument?

Personally, I just think homeopathic remedies are pretty effective placeboes, which I'm ok with because a good placebo effect is a pretty powerful thing.

Not in the slightest, there are some very good natural remedies out there, where I'm sceptical is breathing through a pile of course salt. 

I'm all for a placebo, I don't care how something works as long as it works and if it works I don't look in to it too hard. 

Something is working because I have services 6 machines across 5 different sites today and for the first time in a long time I havnt had to go sit and rest a bit. 

No problem with natural remedies, just "standard" homeopathic dilution is 10^60 which rather means nowt there. If lower dilutions which leave some of the original stuff there are used, then I'll accept that whatever that stuff is might actually be doing something.

At least with the salt I'm sure someone could come up with some plausible possible reason. I would guess that some of it is subliming and ending up in your lungs.

A good attitude when it comes to one's health and wellbeing.

That's good to hear, try not to push too hard too soon (I know it's difficult), don't want you having a relapse.