ska invita
back on the other side
Same schedule as me. I having a little relapse last two days. Legs aching like mad. I'm confident it will end.
Long Covid
- Thread starter zahir
- Start date
Oula
Voice of a Goddess Giant
Sorry to hear that. Is there something in particular that's sparked your relapse?
ska invita
back on the other side
No, I can't think of anything. But relapse whilst annoying (really achey legs and a bit breathy) isn't all that bad really. I had a nap this afternoon which I never do. Just going to slow down a little and then push through
ska invita
back on the other side
Just had a maaasive 11hr sleep, could've slept longer tbh. I think that's what triggers relapses, over doing it, and a big dose of sleeping seems to make for good medicine (though I also find in general too much couch potatoing is bad). Feeling improved today so far
ska invita
back on the other side
... feeling shit again an hour in! Oh well, at least the sun is out
BristolEcho
Well-Known Member
I do worry about people saying they are going to push through it. I know there's a debate about how similar it is to post viral/ME, but from what I can find it seems that doing to much and relapsing can cause a lot of problems.
We found spoon theory and pacing to be a really helpful way to manage after months of trying to do long walks, a holiday away etc. Still no where near recovered but slight improvements and not as many crashes. I appreciate its different for everyone though.
Hope your day goes okay Ska!
We found spoon theory and pacing to be a really helpful way to manage after months of trying to do long walks, a holiday away etc. Still no where near recovered but slight improvements and not as many crashes. I appreciate its different for everyone though.
Hope your day goes okay Ska!
Riklet
procrastinación
Back to cycling and loving it. Got panniers so also been shopping for the first time by bike since what feels like forever. Also learning SQL and data science and back using my laptop for interesting things without being too fatigued from it.. which is awesome.
Tired today tho. Also felt absolutely grim earlier from heart burn.. plus coughing up loads of phlegm. Have drunk a bit of coffee again and I dont think it agrees with me. That and the reduced section pork pie and hummous and other processed crap I got in Morrison's
I notice it after eating super healthy for so long...
Def true about sleep helping. I try and get at least 9 hours a night if possible now. Less than 8 and I really notice it.
Tired today tho. Also felt absolutely grim earlier from heart burn.. plus coughing up loads of phlegm. Have drunk a bit of coffee again and I dont think it agrees with me. That and the reduced section pork pie and hummous and other processed crap I got in Morrison's
I notice it after eating super healthy for so long...Def true about sleep helping. I try and get at least 9 hours a night if possible now. Less than 8 and I really notice it.
Oula
Voice of a Goddess Giant
It makes a massive difference for me but is not totally in my control. I'm going to need by 11 which should be 8 hours sleep. Unfortunately today my daughter woke me up at 6am and on Monday my son woke me up at 5.30am
Oula
Voice of a Goddess Giant
Had another phone consultation with GP on Monday. My x rays didn't show anything (I didn't really expect them to).
I talked about how much worse my symptoms are around my period and the dr suggested a lie dose of SSRIs, which I wasn't up for. She said that evening primrose oil, vitamin b6 and magnesium might help.
In general she said I might want to look into acupuncture but they couldn't provide it on the NHS. She also said to make sure I'm taking enough vitamin D.
Regarding the pain she said to stick with paracetamol and ibuprofen because she didn't want to move into opiate based painkillers. I asked about about pain management clinics but she said that was more around medication.
She suggested talking to the physio again. I asked about long covid clinics. She said there are two locally. One specialises in respirarory symptoms, which I don't have. The other deals with fatigue. She's going to look into that and the physio and refer me to whichever seems more appropriate.
I'm doing better as of the last couple of days. Last week I went for a longish swim one day, then went out for a few drinks the next and then felt awful for the next four days. That's quite a price to pay.
Feeling a bit low because it feels like the things that I enjoy doing fuck me up. I love swimming and it's really important for my mental health. But if it exhausts me so much that I feel wrecked for days then it makes my mental health worse again. Ditto going out. Maybe it's just a summer of activity catching up with me.
I'm not feeling especially supported by my husband and not sure that my friends really understand. After all this time not seeing people there's more stuff going on and it's hard to explain that I can't meet because I'm too tired or have something else on that week and can't manage more than one thing. I want to see people so much.
I talked about how much worse my symptoms are around my period and the dr suggested a lie dose of SSRIs, which I wasn't up for. She said that evening primrose oil, vitamin b6 and magnesium might help.
In general she said I might want to look into acupuncture but they couldn't provide it on the NHS. She also said to make sure I'm taking enough vitamin D.
Regarding the pain she said to stick with paracetamol and ibuprofen because she didn't want to move into opiate based painkillers. I asked about about pain management clinics but she said that was more around medication.
She suggested talking to the physio again. I asked about long covid clinics. She said there are two locally. One specialises in respirarory symptoms, which I don't have. The other deals with fatigue. She's going to look into that and the physio and refer me to whichever seems more appropriate.
I'm doing better as of the last couple of days. Last week I went for a longish swim one day, then went out for a few drinks the next and then felt awful for the next four days. That's quite a price to pay.
Feeling a bit low because it feels like the things that I enjoy doing fuck me up. I love swimming and it's really important for my mental health. But if it exhausts me so much that I feel wrecked for days then it makes my mental health worse again. Ditto going out. Maybe it's just a summer of activity catching up with me.
I'm not feeling especially supported by my husband and not sure that my friends really understand. After all this time not seeing people there's more stuff going on and it's hard to explain that I can't meet because I'm too tired or have something else on that week and can't manage more than one thing. I want to see people so much.
Oula
Voice of a Goddess Giant
Forgot the other thing I meant to say. I've broken a couple of things but dropping them due to my hands not being good. But yesterday was the first time I cut myself due to it. Dropped a tuna tin and instinctively caught it, doing quite a deep cut on my thumb with the lid.
Brainaddict
slight system overdrive
I'm interested in this, but isn't self-management what most ME/CFS/PVF patients end up with anyway, given the medical profession has so little to offer? Is the suggestion that doctors just try to support this self-management, and get patients to it quicker than they would arrive at it by themselves?
Brainaddict
slight system overdrive
Sorry to hear things are bad Oula, I'm finding this book helpful at the moment and it's quite focused on pain Mindfulness for Health: A practical guide to relieving pain, reducing stress and restoring wellbeing : Burch, Vidyamala, Penman, Dr Danny: Amazon.co.uk: Books
It comes with audio guided meditations too. Breathworks also do a course for it if you're up for paying. I know it can be annoying when people suggest meditation, but this is specifically oriented towards how you respond to feelings of pain and fatigue in your body and I think it's quite good.
Oula
Voice of a Goddess Giant
Thanks, I'll look into that
elbows
Well-Known Member
As someone who was both a flu bore here long before this pandemic, and someone full of criticism regarding all sorts of aspects of prior health research and our level of understanding, and our priorities, I cannot say I am surprised by the following:
It lacks useful detail but its a start, an acknowledgement of things we never bothered exploring properly.
People also suffer 'long flu', study shows
Similar to Covid, other viruses can cause prolonged symptoms that take time to get over.
www.bbc.co.uk
It lacks useful detail but its a start, an acknowledgement of things we never bothered exploring properly.
Oula
Voice of a Goddess Giant
I met up with another parent from my son's school to talk about our long Covid yesterday. It was so great to sit face to face with someone and talk about the challenges. Discuss what experiences we've had with doctors and what treatments have been suggested. And just to feel really properly understood.It made such a difference.
I chose not to go for a swim today. I had a really busy day yesterday and I have listened to my body. I'm getting better at doing it and feeling better about it. I'm limping today and in pain but feeling less shit about it. If I listen to my body and rest I should hopefully bounce back. I'm accepting it a bit more.
I chose not to go for a swim today. I had a really busy day yesterday and I have listened to my body. I'm getting better at doing it and feeling better about it. I'm limping today and in pain but feeling less shit about it. If I listen to my body and rest I should hopefully bounce back. I'm accepting it a bit more.
Oula
Voice of a Goddess Giant
I went out and drank more than I have done since having covid on Tuesday night. Partly for experimental purposes. I've felt really fucked up for a few days after drinking even a moderate amount recently. I thought I'd see whether completely resting the next day meant I could do it. So I took the kids to school then went back to bed for the rest of the morning. Ate well. Had a long relaxing bath with epsom salts. Pottered about and read. I felt surprisingly good yesterday.
Today my hands are fucked and I have a mild limp but I feel less bad than when I had two days in a row of going on public transport last week. So I'm cautiously declaring it a success.
I'm also thinking that having rest days like these regularly without having got pissed the night before could do me the world of good.
Today my hands are fucked and I have a mild limp but I feel less bad than when I had two days in a row of going on public transport last week. So I'm cautiously declaring it a success.
I'm also thinking that having rest days like these regularly without having got pissed the night before could do me the world of good.
Brainaddict
slight system overdrive
Yeah, I am also trying to force myself to have rest days where I do nothing - it seems to help. I'm not very good at keeping my diary clear though.
David Clapson
Well-Known Member
I'm not a doctor, but...can I float a treatment suggestion? I have CFS/ME and It's transformed my energy levels. It's a ketogenic diet. If it works, you notice an improvement in a couple of weeks. But first you feel worse as your body stops burning carbs for energy and starts burning fat. Similar process to hitting the wall in a marathon. There are many varieties of keto diet - here's a strict one for people with ME. It's paleo as well https://www.drmyhill.co.uk/wiki/The_Paleo_Ketogenic_Diet_-_this_is_a_diet_which_we_all_should_follow
elbows
Well-Known Member
Some recent estimates:
www.independent.co.uk
More than 1 million reporting long Covid symptoms, ONS data shows
More than 200,000 people say the condition is seriously affecting their day to day life
www.independent.co.uk
Brainaddict
slight system overdrive
I'm glad it works for you, but it deviates quite significantly from what is widely considered to be a healthy diet by most scientists, using data from millions of people around the world. I would need more evidence than I've yet seen to try such a diet.
David Clapson
Well-Known Member
If you wait for an evidence-based treatment for Long Covid you might never get one. And diet research can be very slow because research is usually about developing a drug to treat an illness. Dietary advice from the NHS is pretty much in the dark ages. Your GP will have nothing much to say except 'eat a balanced diet'. I could understand your scepticism if I was suggesting an untested medication, but this is just swapping some normal, nutritious foods for other normal, nutritious foods for a period of a few weeks. What have you got to lose?
ska invita
back on the other side
a big yes to rest - for example just now have had a couple of harder weeks - have been finding working a struggle
so things im doing that are helping
in bed a lot earlier (10.30 even - def asleep by 12 - early for me)
doing some light exercise at lunch time
walking slower
working slower
putting stuff off - generally avoiding all stress
weekends often enjoying big lie ins / watching b&w films in bed, that kind of thing
...all plus exercise when possible, building up strength etc
but yeah, that balance between rest and activity is the one....its definitely different to what it was pre-covid so its all about adjusting
Brainaddict
slight system overdrive
Don't really want to get into a to and fro over it, but even with epilepsy, for which a keto diet is sometimes recommended for medical reasons, there seems to be side effects/risks to the diet which mean that doctors have to monitor people when they put them on it.
I'm interested in the growing evidence around eating more fermented foods for better immune system function. The evidence isn't fully solid yet either, but since it is simply adding a few things to a balanced diet there seems to be no real risk or downsides to it.
Keto, true keto which is under 30g day carbs generally, is not a healthy diet as such but it is an amazing diet for neurology. Therefore it's interesting to hear when it's helping someone with ME as it is probably dealing with some of the symptoms related to neurological issues. It does need to be monitored if you are on it long term with regular blood tests.
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