Bad flare - advice?

[NeutralGazelle]

Hi everyone

I am going through a particularly bad flare at the moment. Has been on and off for weeks (e.g. 3 bad days, 1 good day and so on)

-unable to sleep at night

-disturbed naps throughout the day - wake feeling even worse than before I slept

- flu like symptoms

-unusually emotional!

-muscle aches all over

-irritable because I’m so tired

Any advice on how I can pull myself out of this flare ?

Many thanks

[murtoz]

Hi NeutralGazelle, sorry to hear you are struggling. I don't really have a magic bullet for you, but invariably when my symptoms get worse, I haven't really been pacing myself. And pacing means when I flare, I do absolutely nothing, and allow my body time to catch up. Easier said than done though - I get so frustrated with doing nothing, but it really is crucial. And I now try to look at it not as doing nothing, but as taking care of my body. Then at least I can feel I am actively doing something to make things better.

Apart from that, I fight the symptoms and get a little relief that way:

- Flu like symptoms - Lemsip, chicken soup;

- Muscle aches: pain killers, hot baths, kinesiology tape, shoulder & elbow straps, arthritis gloves, a heated blanket to lie on

- Unable to sleep: I love falling asleep to audio books as it stops my mind from wandering. If that doesn't work I fall back on a guided relaxation excercise and 9 times out of 10 I don't quite make it to the end of it because I've fallen asleep. This one works particularly well for me: youtube.com/watch?v=59cUIi7...(Not working as expected?)

Last thing to say is that flu like symptoms, body aches and fatigue are all now considered signs of covid, so make sure you do a PCR test and rule that out.

Happy new year and hope you can get on top of your flare soon!

[NeutralGazelle in reply to murtoz]

Murtoz,Thank you so much for your detailed reply! It’s so nice to know there are people out there who understand.

Definitely haven’t tried or heard of some of your suggestions, so excited to give them a go.

Hope you have a wonderful New Year!

[Calliepet in reply to murtoz]

I am always worse in the winter, evidently it is common issue. My friend in the USA says they call it the October slide. For me during April my energy levels will improve a bit. I can't work out what causes it. I struggle with pacing so sometimes I use a kitchen timer. My up time is 20 minutes, then I rest or change to a really low energy task for 40. Changing from a task that takes mental energy to one that takes physical, or vice versa, helps too. Tell yourself you will get the same amount done because you won't end up back in bed, plus it hurts less

[Regalbirdy]

Hi

The thing is about flareups is (at the moment) they can mirror some of the Covid symptoms. If you haven’t already, maybe do a test just to make sure you’re negative.

And I’m as guilty of this as the next person at the moment – do remember to pace yourself! Feeling better is a double edged sword, because the desire to do too many ‘normal’ activities is always there.

Ps. If you are a female who is 40+, then also consider that it could be related to menopause and peri menopausal symptoms. If you suspect this may be the case, then hotfoot it to your Friendly local doctor to discuss HRT…! In hindsight this is what I wish I’d done at least three years earlier than I actually did.

Good luck and take care of yourself.

[NeutralGazelle]

Thank you so much.Yes I have been taking LFT’s a couple times a week as always have flu-like symptoms! Have been negative thus far, touch wood.

[Regalbirdy in reply to NeutralGazelle]

Btw, I’ve found controlling my diet is of huge benefit in the management of symptoms.

About 3years ago, I noticed that the day after eating high carbohydrate foods (rice, potatoes, sweet foods etc) that it would make my fatigue issues worse. I also reacted to soya pretty badly - it wiped me out; and eating dairy products cause my joints to flare up.

These days I follow most of the protocols put in place by Dr Sarah Myhill (Google for more info). It’s not a perfect solution but it does allow me to function at a much better level than before.

Low carb and grain free might sound really drastic but it works for me. If I relax this way of eating and have something that I shouldn’t (including alcohol), then I definitely notice the difference the following day.

I’m no saint and relaxed my diet on Christmas Day. Unfortunately it meant that I spent most of boxing day in bed as a direct result!

[NeutralGazelle in reply to Regalbirdy]

Have just watched a video by Dr Myhill, super interesting, thanks for the recommendation.I have never attempted cutting out carbs as I wouldn’t know what to replace them with and how to feel ‘full’. What do you eat instead, as the main component of your meal?

Thanks!

[Regalbirdy in reply to NeutralGazelle]

Broadly speaking, I eat a high-fat moderate protein and low carb diet.

Gradually your body starts burning fats if your carb levels are low enough. My main go to fat is avocado oil - mostly because you can use it at cooking temperatures without it degrading. However I also will use extra virgin olive oil, or very occasionally hemp oil for cold foods. Whilst I know these aren’t the cheapest options, I feel that the health benefits have been worth it.

I eat a clean diet which includes a lot of green vegetables, eggs and nuts. Many people will include meat and fish in their diet too. However I’m a vegetarian - so these are not things I choose to eat.

One thing that I noticed is that after about a month, I felt less hungry before a meal. It then meant that I didn’t need to keep eating until I was ‘full’. It also caused me to lose weight in the beginning (which was fine because I needed to!), however after about 18 months I decided to adjust my carb intake upwards a little to neutralise this.

If you choose to go down the low carb route, just be aware that the sugar cravings can be horrendous for the first few weeks! There are also a number of other side effects in the beginning whilst your body adjusts, which can last up to 12 weeks. If you choose to change your diet, do consider seeking medical advice - as eating low carb may not be suitable for everyone.

These days I’m able to hold down a job again, albeit a modest one. x

[NeutralGazelle in reply to Regalbirdy]

Thank you so much for your detailed reply. I also do not eat meat or dairy so it is helpful to hear how you manage a low carbon diet without including these animal products. I am only just starting to cut out processed sugar as I consumed so much over over festive season - come to think of it, I wonder if that could have impacted the bad flare im going through. Really struggling with the withdrawal!

[doglover1973]

Hi NeutralGazelle Nothing beats pacing yourself . I think people (in general) and doctors (in particular) underestimate the power of pacing. Done well it can really iron out the ups & downs. I say that as someone who leads a restricted life . I also agree that relaxation & diet are key factors. I gave up sugar four years ago. It's not easy but it's made a difference to my energy levels. All the best .

[NeutralGazelle]

Yes seems that the general consensus is that pacing is the best thing to do. I do find it very hard though. When you’ve been forced to stay in bed for a week and you have a day where you finally feel relatively normal you just want to get out of the house, exercise, catch-up on chores…and then you’re back in bed again from over exertion l!

[PaigeyPaigeForLife]

I sorry to hear that, my stint has been since last year October, I've had some good days in between but mostly in bed, this illness sucks! I hope you feel better to enjoy life away from your bed.