Long Covid - have just had enough now

[MotherOfPuffling]

Just that really. It’s been a year now, and this last few weeks it feels like it’s been getting worse, after a couple of good weeks that gave me hope. I know I have it better than many: family support, can afford to live on my (very) PT wages (ok only just, but still), work are letting me just work whatever hours I can (which is amazing of them). Had to ask ex to collect DD from school as getting her there this morning was such a nightmare. It used to take less than 15 minutes to get there and home, it took 45 minutes just to get home today as I could barely walk, and got her there late as my damned feet just would not move, and I was inching along like an ancient. Is anyone else here going through this? Has anyone found anything that helps? I was having alternative therapy but was paying out of savings and just can’t afford it anymore, which is galling as it was helping a little bit. I just miss having a life, even simple things like being able to go out with friends, pop out to pick up groceries, take DD to the park, play with her, go to the office and see workmates, all impossible for - how long? Another year? Forever? Have been on the waiting list for a long Covid clinic all that time but am in London and have been warned the waits are very long. Feeling like the Govt have just decided to forget about the million or so of us affected by this, especially as it disproportionately affects middle aged women. Help!

The irony is that I am too tired to reply to this properly due to Long Covid. Just know you're not alone.

Hi, I totally understand how you feel. I have been unwell for nearly 2 years now. I have started to see minor improvements in the last few months but I still feel terrible, and life is extremely limited. Just desperate to be a proper mum to my 3 year old. What symptoms do you have and what have you tried? Xx

I too have it

Thinking about you all.

I'm 95% better from long covid - it's taken 2.5 years. There is still hope.

Graded exercise therapy helped me but it had to be very graded and I still get relapses - weeks when I can do very little. And I take a shit tonne of supplements to try and combat the neurological symptoms.

Can I ask what supplements you take please. It's the neurological symptoms which are so harsh at times.

It took me a while to get to Long Covid Clinic (West Yorkshire). I've had 3 telephone appointments and am on the list to see a physio and occupational therapist but that's not likely to be soon. They recommended I take Tumeric for the joint pain and Magnesium and Zinc for the headaches . They sent me an info sheet on pacing activities etc. I have agreed flexibility with my employer re going into the office 1-2 days per week and not consécutive which helps as I have a long commute. Some days I'm so tired I feel dizzy and like my batteries are drained. I get very frustrated having to limit my activités but if I don't I pay for it for days. It's rubbish so I sympathise with you OP

I have a few colleagues at work who believe they have it, it’s like their bodies have started ageing far quicker than normal, the additional issue is the company has a strict policy when it comes to time off for sickness so capability meetings are now a thing for them.

I hope you recover soon OP.

this thread "if you've recovered from Long Covid, what helped? may be of interest?

I've not had Covid but a series of other health issues that left me really struggling with fatigue for about 8 months and some of the suggestions on this thread made a big difference to me. Particularly the very high strength B complex and some magnesium supplementation.

Best wishes.

It's still possible you may get better, but moneywise, you should think about planning as if you won't recover. I have had ME/CFS for decades.

"Feeling like the Govt have just decided to forget about the million or so of us affected by this,"

Well of course. They already did it to ME sufferers, so they can do it to you too.

I was just starting to recover from LC when I got Covid for the second time a couple of weeks ago. I’m waiting to see what, if any, implications there are. I’m likely to lose my job (NHS nurse) so I’m really worried about what I’m going to do for work and earning.

The LC clinic advice that’s made a difference to me:

No exercise at all (GET has been found to be problematic and the CFS ME community have been significantly harmed by this approach) other than 20 minutes walking maximum a day and no weight bearing exercise.

Antihistamines and a low histamine diet.

HRT or a higher dose oestrogen contraceptive to help with hormone related increased anxiety.

Therapeutic rest every day.

I think that’s all. Will come back if I remember anything else.

I just posted this in error on the other thread that was linked so putting it here too!

I had covid in feb 2020 and have been on a rollercoaster ever since, being bed bound for three months at worst but I'm a stage now where although I still suffer it's manageable.

The resting and pacing is the key- if you can't manage the walk to school can you ask another parent to help with pick ups for a few weeks?

One thing which I felt had a huge positive impact for me was acupuncture. I had it once a fortnight for a few months then once a month for a further six months, now once every couple of months. I was quite sceptical but saw it mentioned in a few articles and was at the try anything stage and in the words of my consultant "it can't hurt" so I gave it a go. I probably felt worse after the first few sessions but then saw big improvements especially with leaden legs and energy levels. Big note though is not to go crazy and do too much when energy levels increase as that just puts you back.

I also had counselling to help me deal with the mental impact of going from being a busy energetic mum with a high flyer career to being the lady who was signed off work sick and was crying on the shower floor because I didn't have the energy to get out of the bathroom. Body and mind need to work together and this helped me accept where I was and I stopped pushing myself to try and do more than I was capable of.

Finally I take b12 supplements and a probiotic.

I don't have this but just wanted to send my heartfelt support to all those suffering from it, it sounds just awful. I hope so much that recovery is there in the future for you.

So I am officially diagnosed with chronic fatigue syndrome, which is very similar to long covid- in fact the virus that triggered my illness was a mystery one that I got in 2020, so it may in fact have been covid after all.

Anyway, as others have said, rest and pacing are super important. Don’t push yourself to your limits, try and work out what you can manage and stop and rest BEFORE you start feeling ill. Then I did very slow, very gentle graded exercise therapy with a physio therapist and built up from 2000 to 5000 steps a day over the course of a year. I increased my daily steps by about 10% at a time every month or so- if it was ever too much or I crashed I dropped it back down. I also took vitamin D which didn’t help with the fatigue but made a difference to my aches and pains.

Anyway, that got me part of the way better. Then a couple of months ago, I just suddenly started feeling much better? I’m scared to say I’m cured in case I get worse again, but I genuinely feel back to about 90% of what I was- my strength and stamina have suffered I think from not being able to do much the past few years. It’s been just over 2 years from when I got ill, and I’ve heard of others in a similar time frame. So there are things you can do, but also it seems to be possible to get better spontaneously with time

Can I ask what symptoms you all have please? My GP seems to think I have it but I didn't start to get symptoms until months after I had CoVID so I just don't think I do.

My own symptoms are:

Fatigue
Upper back pain
Feeling sick a lot of the time but not always
Sweating
Dizziness
Sometimes my mouth seems to water all the time.

I've had blood tests which are fine and a CT scan which is fine but I am literally at the end of my tether. Could this be LC?

@Torturedsoul sure. The ones I've found most useful are the omega 3 fish oil, vit b12 and a mixed capsule which claims to help with adrenal fatigue (adrenal fatigue is not a clinically recognised diagnosis - unfortunately because it best describes the majority of my symptoms. Nonetheless you can buy capsules to treat it and some people find they help). Also, the covid clinic did detect that I have very low levels of cortisol and research out of the US is now postulating that a marker for long covid so maybe the whole adrenal fatigue is more than a crackpot theory...

@TitaniasAss what did you have a ct scan of? A lot of what you describe could be considered long covid symptoms, they are many and varied but I'd only accept it as a diagnosis if they've excluded everything else tbh Also, see my previous post, get them to check your morning cortisol level. If it's long covid then it should be out.

CT scan was from my neck to my pelvis. I've been to my GP more times in the last two months than I have been in the last 20 years, I never go unless I need to. I'm so sick of it all now.

As your seeking alternative therapies anyway I’ll suggest something I thought was a little crazy at first. A good friend of mine suffers Lymes disease with many of the symptoms mimicking long covid. Long term affects can be neurological issues and heart disease but often start flu as like symptoms, aching joints, fatigue, forgetfulness, shortness of breath etc. It’s often misdiagnosed or brushed off as all-in-your-head.
Anyway, there a a group in Australia that is saying as there is not much known about covid and it’s origin, the fact that it responded so well to Ivermectin could indicate that it has a bacterial component very similar to Lymes disease, hence why so many people are suffering the same symptoms with Long Covid. If you’ve tried everything and still suffering anyway, if might not hurt to look into Lymes disease and see if similar treatments might help?

I had covid many months ago and although I wasn't too ill at the time, nothing more than a very mild cold type illness, my cognitive functioning dropped off significantly. If fact this was the reason I tested for covid, I felt I had rapid onset of dementia. My thoughts were jumbled and words didn't flow, I couldn't navigate normally easy things like timings for making supper etc.
Then it made sense as it was a very positive test.

I too feel my body is ageing rapidly. My joints hurt, my body just feels old.

What I have found improves my stamina, memory and my general wellness is zinc, large amounts of vitamin D, and floradix (without the iron) max dose. I really notice it is I forget to take it after a few days. It must be helping. My energy levels have improved considerably.

Just hoping I have enough antibodies not to catch it again this winter.

That's good news. Really pleased that you have turned a corner. Exercise is a trigger for me - was it ever a trigger for you? What supplements have you found most helpful for neurological side?

These ones, plus high dose vit c and zinc

I wanted to send best wishes to those suffering.
I remember what glandular fever did to me as a fit healthy teenager.

Then in my late 30s I had fatigue, pain, headaches, joint pain and swelling, rashes etc. I was diagnosed with no hormones (levels were very very low on repeated tests) - so to go on the pill, vit-D deficiency and something else was low. 6 months, 9 months went past and my blood tests were normal but I felt the same.
After a lengthy battle I was diagnosed with autoimmune disease. It didn't show up in the blood tests at that point and the exhaustion was and is horrid.
If it's any help, my constant biggest error is overdoing things when I feel good. It takes a long time to then undo that.
A friend with ME recommended me a supplement with Q10 and D-Ribose in.

Did you ever improve?