Long Covid

Hello Phillipa
I think that this happened with my husband in November.
It coincided with him having a flu vaccine and a shingles vaccine on the same day.
I’m not sure if he’s going to risk having any more vaccinations.
He also has a buggered immune system (this was prior to Covid)
It’s a mystery really isn’t it.
Thanks for starting this thread, I’ll be following with interest
Best wishes to you.

Sounds very similar to ME. I knew several people that suffered from ME and they had to pace themselves because if they felt ok and overdid things they would have a relapse. As I feared, as with ME, people suffering from long covid will just be ignored and not taken seriously.

The government won't want to recognise it - think of a huge increase in disability benefits, sick pay and attendance allowance - no way!

Thanks for the inputs.
I was a perfectly healthy and active 63 year old before Covid.
I could cry about the negative impact it's had on my health.
I am specifically interested in whether long covid can fade and almost disappear and then return - I had not heard of that till it happened to me now

Philippa60

Thanks for the inputs.
I was a perfectly healthy and active 63 year old before Covid.
I could cry about the negative impact it's had on my health.
I am specifically interested in whether long covid can fade and almost disappear and then return - I had not heard of that till it happened to me now

I'm really glad you posted this, because I honestly think I've got it too. I've not been right since I had covid last Easter. Everytime I think I'm just about to get back on my feet again, I end up back to square one again.

I just had a severe cold with Covid last March, leading me to believe I’d got off lightly.
However, a fortnight later I lost power in my legs and my blood pressure yo-yo’d by 60 points on the top number.
The GP told me to think of the condition as post-viral, something that caused me to shift the blame from Covid and into the normal realm. I had post-viral fatigue previously, after glandular fever and again after flu many years later.
All I can say is if you need to rest, take every opportunity to do so. Don’t worry about others and what they think you should be doing. It’s your life and is precious to you, so treat it that way.
I’m good now. You’ll wake up one day and realise it’s all gone over.

MayBee70

Sounds very similar to ME. I knew several people that suffered from ME and they had to pace themselves because if they felt ok and overdid things they would have a relapse. As I feared, as with ME, people suffering from long covid will just be ignored and not taken seriously.

There was a lot of work going on in the 80s looking at the correlation between Flu and ME. A lot of people had had Flu before developing ME.

Gosh I hope it's not ME.
I really hope this is true:

You’ll wake up one day and realise it’s all gone over.

There's a correlation between M.E. and Glandular Fever too. I caught GF from my daughter back in 1989, then collapsed with M.E. and have not been able to work since then.... or to do much else, really. Have now clocked up 34 years of fatigue, brain fog, pain, headaches, etc etc with M.E. and developed several other diseases/conditions along the way which caused M.E. relapses.

All of us who suffer with this are desperately hoping that more research will be done now that Long Covid is on the scene because clearly the Covid virus is having a similar effect on people's bodies.

I'm sorry that you're suffering Philippa60 and would suggest you join a closed Facebook support group where you will learn a lot about what you can do to help yourself. The main thing that those of us with M.E. are told to do is to learn how to pace ourselves. As you say, a hectic few days and you are back to square one. Pacing is terribly hard to master because it's such a joy to have a little bit of energy that we naturally want to catch up with all the things we've not been able to do.

An M.E. Consultant back in 1991 told me to only do 75% of what I thought I could do..... how I am supposed to assess that, goodness only knows!

Thanks for the advice about the private FB group, I have just joined it

MayBee70

Sounds very similar to ME. I knew several people that suffered from ME and they had to pace themselves because if they felt ok and overdid things they would have a relapse. As I feared, as with ME, people suffering from long covid will just be ignored and not taken seriously.

I think that is exactly what it is.

I have had some form of post viral for years which started after I had a particularly nasty virus caught after flying home from the Caribbean.

This means that after the initial symptoms - the OP describes I feel well until I am either stressed or overdo it and bam back to square one which now I’m retired takes about 10 days to go. I have learned to live with it.

I have had Covid twice with no symptoms only knew I had it because I was tested.
I now have 18 legs and pins and needles in most of my body, especially when I am inactive or in bed, never had this before, so the doctor is putting it down to long Covid, but that’s an easy diagnosis to make isn’t it?
I have had a really thorough blood test and I have had scans, but nothing is showing up everything is as they say “
satisfactory”
I am 70 and still work three days a week in a care home, only six hour shifts and I don’t get any aches and pains when I’m at work.
Reading some of the conditions that you are experiencing, I think I need to count myself quite lucky..

My daughter, who is now 30, got long Covid and after 2 years she still hasn't quite recovered.
When she described her symptoms when it was first diagnosed, it sounded exactly the same as how I was in the early days of M.E. It alarmed me so much as I felt unhappy enough at having it myself over my 50s and 60s; it would be far worse if it continued like M.E. does from the age of 30.

It does seem that people are generally recovering from long covid (not all I'm sure), which is encouraging. I do hope the research it has prompted will be of help to M.E. sufferers.

I think what set my M.E. off was radiotherapy for breast cancer 20 years ago. It wasn't diagnosed for 2 years, because of the exhaustion that can be caused by radiotherapy, and a GP for whom M.E. simply didn't exist! Once it was diagnosed and treatment started, they said that they thought it was caused by an over-active immune system, as I also have Type 1 diabetes, which made sense.

shinamae
I'm sorry to hear you now have 18 legs

That's a horrible problem!

My husband has ME.
He has had it on and off - since the mid/late 1980s or early 90s - but increasingly "off".

He had Covid last spring and now has many, many more ME symptoms (again on-and-off) but more "on" than it had been for 20 years.

NotSpaghetti

shinamae
I'm sorry to hear you now have 18 legs

That's a horrible problem!

I know, it’s a bugger, buying shoes, cost me a fortune! 😂😂

My son has been ill with long covid since almost the beginning of the pandemic. He was hospitalised with cardiac symptoms and has problems with postural hypotension, headaches neuralgia and pins and needles in arms and legs.
An engineered virus to attack the nervous system ?
He attends a clinic but it does not seem to provide any answers, their only suggestion to date is to go cold water swimming. I fear he could have a heart attack if he jumped in a lake at this time of year.

I saw an advert on Facebook for 12 week free courses that are being ran by Nuffield Health for people with long covid. I assume that sub contracting it to a private health company is the sum total of the help long covid sufferers are now getting?

This is the key from the O/P

"Then 4 days ago, after a hectic few days, WHAM I am back where I started with the same symptoms exactly."

I have CFS, it has many similarities: I too hoped it meant resources would be drawn together but there aren't a lot of signs of this. (there are of course some physical leftovers from Covid that dont apply to ME/CFS).

I did get a specialist appointment and the key - easy to say, hard to do especially if you live alone and have to do everything - is pacing.

You have to limit activities both physical and mental and stop before you reach the critical tipping point. Its hard to find out what your individual tipping point is not necessarily "exhausted". The best way of describing that tipping point is where you start sort of carry on doing things on adrenaline and mechanically.

It needs life re-organising and involves family and friends understanding that you may have to stop chatting after an hour or that you have to disappear to bed, leave meetings, get a cleaner, and find resources like listening to music and chatting online instead of engaging so much.

Above all planning the calendar realistically ahead and making arrangements with the understanding that they might need to be changed.

Yes it is frustrating especially with things like seeing family and outings but has some of its own quiet rewards.

but is you had got quite a lot better before the 4 days and the WHAM you can get back to that place. x