Chronic Fatigue

[AndBreathe]

Don’t think I can change the list as the GP already sent it electronically for the appointment, so see what the existing list comes back with

If it is like my surgery, "sent electronically" means saved on a system somewhere. The test request paperwork goes off to the lab with the various vials. Adding to the list is simple enough. Your GP would just add another sheet, or amend what was sent.
Depending who is taking the bloods, they might be confident to add it. I have been asked to write on the blood form what was required for my thyroid as it wasn't specific and with the meds I take, a certain test has to be done or it's a waste of time.

It's up to you whether you want to ask.

 

[mikeyB]

Interestingly, there as an article on this week’s New Scientist that the symptoms of CFS could be caused by micro blood clots. These microclots can be found in many diseases where inflammation may be found such as diabetes, rheumatoid arthritis and Alzheimer’s. The researchers from Stelllenbosch University in South Africa and Liverpool University used 25 sufferers of CFS for longer than 6 months, and compared samples of blood from 15 ‘normal’ people. Using standard analysis in the normal people, most scored 1 of the five standard analysis for microclots. In the folk with CFS 80% of the CFS group scored 2 or higher. Nearly half scored 3 or 4.

They think that this may account for the exhaustion seen in CFS because these microclots, though harmless, are unable to transmit as much Oxygen to organs such as the brain, or muscles.

The end speculation is that it may be possible to treat the condition with anti-clotting treatment.

The commonest anti-clotting treatment is also the cheapest. Aspirin. Many cardiac patients take daily aspirin - a single paediatric dose used in children. That is sufficient to inhibit blood from clotting in the bloodstream. That dose in an adult is far too small to produce any side effects, 0.5% of the normal daily dose for an adult.

So all you folk with CFS could try an experiment- take one child sized aspirin a day, and see if it makes a difference. Don’t do this if you take Warfarin. And stop if you get indigestion. (Not very likely).

 

[AJLang]

Interestingly, there as an article on this week’s New Scientist that the symptoms of CFS could be caused by micro blood clots. These microclots can be found in many diseases where inflammation may be found such as diabetes, rheumatoid arthritis and Alzheimer’s. The researchers from Stelllenbosch University in South Africa and Liverpool University used 25 sufferers of CFS for longer than 6 months, and compared samples of blood from 15 ‘normal’ people. Using standard analysis in the normal people, most scored 1 of the five standard analysis for microclots. In the folk with CFS 80% of the CFS group scored 2 or higher. Nearly half scored 3 or 4.

They think that this may account for the exhaustion seen in CFS because these microclots, though harmless, are unable to transmit as much Oxygen to organs such as the brain, or muscles.

The end speculation is that it may be possible to treat the condition with anti-clotting treatment.

The commonest anti-clotting treatment is also the cheapest. Aspirin. Many cardiac patients take daily aspirin - a single paediatric dose used in children. That is sufficient to inhibit blood from clotting in the bloodstream. That dose in an adult is far too small to produce any side effects, 0.5% of the normal daily dose for an adult.

So all you folk with CFS could try an experiment- take one child sized aspirin a day, and see if it makes a difference. Don’t do this if you take Warfarin. And stop if you get indigestion. (Not very likely).

That’s a lovely thought for a simple solution but unfortunately despite taking daily aspirin for over ten years for other reasons it’s had no effect on my fatigue.
However ubiquinol is a recommended vitamin for it and I find that it does help a small bit - but I can’t take it as often as I would like because of digestion problems with the gastroparesis.

 

[AndBreathe]

Interestingly, there as an article on this week’s New Scientist that the symptoms of CFS could be caused by micro blood clots. These microclots can be found in many diseases where inflammation may be found such as diabetes, rheumatoid arthritis and Alzheimer’s. The researchers from Stelllenbosch University in South Africa and Liverpool University used 25 sufferers of CFS for longer than 6 months, and compared samples of blood from 15 ‘normal’ people. Using standard analysis in the normal people, most scored 1 of the five standard analysis for microclots. In the folk with CFS 80% of the CFS group scored 2 or higher. Nearly half scored 3 or 4.

They think that this may account for the exhaustion seen in CFS because these microclots, though harmless, are unable to transmit as much Oxygen to organs such as the brain, or muscles.

The end speculation is that it may be possible to treat the condition with anti-clotting treatment.

The commonest anti-clotting treatment is also the cheapest. Aspirin. Many cardiac patients take daily aspirin - a single paediatric dose used in children. That is sufficient to inhibit blood from clotting in the bloodstream. That dose in an adult is far too small to produce any side effects, 0.5% of the normal daily dose for an adult.

So all you folk with CFS could try an experiment- take one child sized aspirin a day, and see if it makes a difference. Don’t do this if you take Warfarin. And stop if you get indigestion. (Not very likely).

Has your view of micro clots changed ?

 

[Elbram]

Hi Lucyr, Sorry to hear about that. Many people continue to have fatigue from long covid, could it be that do you think? Docs are amazing but they are not always correct. Check for Vit B and iron deficiencies too, not as a cause per se, but upping these might help.

 

[Lucyr]

Hi Lucyr, Sorry to hear about that. Many people continue to have fatigue from long covid, could it be that do you think? Docs are amazing but they are not always correct. Check for Vit B and iron deficiencies too, not as a cause per se, but upping these might help.

It started before I had Covid, so it wouldn’t be classed as long Covid. I’ll probably start a good multivitamin but wait until after the blood tests to do this so it doesn’t affect anything.

 

[AndBreathe]

It started before I had Covid, so it wouldn’t be classed as long Covid. I’ll probably start a good multivitamin but wait until after the blood tests to do this so it doesn’t affect anything.

Lucy, were you tested for Covid at Christmas; the time of your initial viral episode?

My friend living with long covid, and attending NHS specialist clinics has never had a positive covid test, but had what is now being accepted as Covid, right at the very outset of the pandemic. She has also had a few relapses along the way. It's miserable.

 

[Lucyr]

Lucy, were you tested for Covid at Christmas; the time of your initial viral episode?

My friend living with long covid, and attending NHS specialist clinics has never had a positive covid test, but had what is now being accepted as Covid, right at the very outset of the pandemic. She has also had a few relapses along the way. It's miserable.

Yeah me and my sister both had the same illness, both did LFTs and PCRs, and I did them again when the post viral symptoms flared up in jan and feb, and they were done as I was admitted to hospital. All tests negative for Covid until about April when I was just getting back to things properly

 

[AndBreathe]

Yeah me and my sister both had the same illness, both did LFTs and PCRs, and I did them again when the post viral symptoms flared up in jan and feb, and they were done as I was admitted to hospital. All tests negative for Covid until about April when I was just getting back to things properly

Poor you. You've been through the mill.

 

[TheClockworkDodo]

Well @Pumper_Sue and @gll id never get my full time job and volunteering commitments and housework and hobbies on top of that all done if i tried to do it in 10 minute chunks with hour long rests in between!!! My current strategy is a cycle of go until cup is empty, crash out at zero energy empty cup until I reach minimum energy to start again and then repeat. This did work fine until the energy problems this year…

Here’s hoping it’s something with a magic cure instead!

I really hope for your sake it's something with a magic cure, @Lucyr - but in the meanwhile the boom and bust strategy you describe really is the worst possible thing you can do if it's CFS/ME, so please try to pace yourself and get plenty of rest!

I've had ME for 30 years and was on the committee of local support group for several years, and I've seen so many people try to push themselves through CFS or ME only to get very ill indeed in the very long-term and have to stop everything they do - so it really isn't worth it. Exercise is the worst possible thing for it - this includes overdoing it mentally as well as physically. The OTs in our local CFS/ME service used to spend most of their time trying to persuade patients who had it to do less.

There is no treatment and no cure, so the only meds they can give you would be to treat individual symptoms. It is not all bad though - some people do get better, but they are mostly the ones who get a quick (ie within months, not years) diagnosis and take it seriously, cut down on activities, pace themselves, and get plenty of rest.

If you do get a diagnosis of ME or CFS feel free to pm me, I have quite a bit of info about it and various resources bookmarked.

 

[TheClockworkDodo]

Interestingly, there as an article on this week’s New Scientist that the symptoms of CFS could be caused by micro blood clots. These microclots can be found in many diseases where inflammation may be found such as diabetes, rheumatoid arthritis and Alzheimer’s. The researchers from Stelllenbosch University in South Africa and Liverpool University used 25 sufferers of CFS for longer than 6 months, and compared samples of blood from 15 ‘normal’ people. Using standard analysis in the normal people, most scored 1 of the five standard analysis for microclots. In the folk with CFS 80% of the CFS group scored 2 or higher. Nearly half scored 3 or 4.

They think that this may account for the exhaustion seen in CFS because these microclots, though harmless, are unable to transmit as much Oxygen to organs such as the brain, or muscles.

The end speculation is that it may be possible to treat the condition with anti-clotting treatment.

The commonest anti-clotting treatment is also the cheapest. Aspirin. Many cardiac patients take daily aspirin - a single paediatric dose used in children. That is sufficient to inhibit blood from clotting in the bloodstream. That dose in an adult is far too small to produce any side effects, 0.5% of the normal daily dose for an adult.

So all you folk with CFS could try an experiment- take one child sized aspirin a day, and see if it makes a difference. Don’t do this if you take Warfarin. And stop if you get indigestion. (Not very likely).

R saw that article and told me about it - the thing I wonder is whether the research was done on people who had ME or more unspecified chronic fatigue (they have different diagnostic criteria and a lot of research tends to be done on people with chronic fatigue as people with ME are too ill to take part or are excluded for some other reason), as both ME and more generic unexplained chronic fatigue tend to get unhelpfully lumped together as CFS.

Like @AJLang I take aspirin every day and like AJLang I still have ME. Interestingly though, when I was in hospital with DKA I was given oxygen because of my chemical sensitivities (hospital ward being about the worst place for me, breathing-wise) and there was a big improvement in my ME for a few months after I came out - I always wondered whether that might be the effect of the oxygen. I later had tests for blood oxygen levels but they were more or less normal.

 

[Lucyr]

Thought I’d update you on this. I’m still struggling with a constant headache which is painful and distracting to try and work through. The severity comes and goes, probably reaches migraine levels a few times a week and more like headache levels rest of the time. The tiredness and aching comes and goes too, I’ve given up on working in the office as it’s a 10-15 minute walk away, but I can work from home. Some days I can walk 10k steps fine, and others I have to have a lie down after getting dressed, aching is too bad to hang washing out, aches to brush hair etc.

The bloods came back normal (I have reviewed actual numbers on the app), other than high white cells and neutrophils which I am always high for, across many years. The GP will get a second opinion on those, and has referred me to an ME specialist to see if they think it’s that, otherwise it could be that Covid triggered something to restart these symptoms.

I’ve started taking amitryptaline to ease the headaches and give more deeper sleep, I find this makes me tired in the day but hopefully that will improve.

Am still working and just trying to get through the headaches but it is difficult some days and have to take some time off when it’s at its worst. Have a sick note to cover those times for the next couple of months now.

 

[Lucyr]

Oh and the blood tests people care about here: a1c down from 70 to 60 (the 70 was in February when this illness was at its worst, so things are improving there, though not being able to exercise is difficult for bg control), kidneys and liver both fine too. We didn’t check cholesterol as tests were for the illness not a diabetes review.

 

[berryr99]

I have struggled with fatigue for at least 10 years, if not more. Through that time there has been no help at all from the GP's. Done all the blood tests etc and the only thing they said at one time "it most be your diabetes". I'm going to have another go at them but there's a lack of interest (and no proper diabetes checks etc etc). I know the NHS is under pressure but the amount of carry-on with diagnosing my neuropathy involved Podiatry x 2, Falls Clinic (Too young !), Physio over the phone and now back to podiatry ! I think they think I am a pain !

 

[Lucyr]

I have struggled with fatigue for at least 10 years, if not more. Through that time there has been no help at all from the GP's. Done all the blood tests etc and the only thing they said at one time "it most be your diabetes". I'm going to have another go at them but there's a lack of interest (and no proper diabetes checks etc etc). I know the NHS is under pressure but the amount of carry-on with diagnosing my neuropathy involved Podiatry x 2, Falls Clinic (Too young !), Physio over the phone and now back to podiatry ! I think they think I am a pain !

Sorry to hear youre struggling too, it is worth going back and seeing if anything else needs rechecking or if they can refer you to a specialist to find out how to manage the fatigue

 

[TheClockworkDodo]

Glad to hear you've been referred to an ME specialist, @Lucyr - much better to get a diagnosis asap, if it is that, than having GPs who don't tend to know much about it dithering for ages.

It's common with ME for the amount someone can do from day to day to vary quite a bit - sometimes the only thing you can do is lie down and recover. On a good day I can walk 2 or 3 miles, on a bad day I would struggle to cross the street. Learning when to stop and rest (well before it gets so bad you have to stop and rest) is really crucial. Always keep an extra spoon in reserve (if you don't know the spoon theory and that doesn't make sense, it's here).

I tried Amitripyline for a bit to help me sleep but found it made me too zombie-ish during the day, though I know other people who are fine with it. I switched to herbal sleeping pills (Potters passiflora) instead which didn't knock me out quite so much at night but did help me get to sleep. After a while I stopped needing them. I also know other people with ME who've found Valerian more helpful.

Anadin Extra might help with the migraines (that is, if you're not on other meds for them and can tolerate the ingredients) - or even just ordinary aspirin.

If you do have ME you will find that a very small amount of exercise has a very big effect on you, including on your blood sugar, so not being able to do what most people think of as exercise shouldn't be a huge problem. Anything you can do to make yourself feel less stressed should also have a surprisingly big effect. If I go out in the garden my blood sugar plummets, even if I'm not really doing much.

Some people with ME are low on Vitamin B12 and/or Folic Acid, so worth getting those checked, if you haven't already.

 

[jackymax]

Do you have any pain with your fatigue? If you do. maybe ask your GP about Fibromyalgia. There's no test for it, just elimination of everything else.
Sorry you are going through this.

 

[Lucyr]

Do you have any pain with your fatigue? If you do. maybe ask your GP about Fibromyalgia. There's no test for it, just elimination of everything else.
Sorry you are going through this.

Yes I have generalised aching and headaches but not joint pain so I think CFS/ME might be a better fit but not sure, and I’d still rather it be something treatable! The notes from GP says it’s possible CFS/ME/Fibromyalgia and referal is to a specialist in CFS/ME. The only thing abnormal on my bloods is a high white cell count, which I’m always high on, so don’t really have anything medical left to rule out as other tests all normal.

 

[TheClockworkDodo]

You might find it useful to have a look at the diagnostic criteria for ME and see whether you meet them, @Lucyr - there are several different ones, but the best ones are the International Consensus Criteria, which were written by an international panel of ME specialists, who really knew what they were talking about when they drew them up! There's a short version (which has all the actual criteria but not all the further details which were published with them) here - https://meassociation.org.uk/wp-content/uploads/2011/07/ICC-short-version.pdf

 

[Thebearcametoo]

Thought I’d update you on this. I’m still struggling with a constant headache which is painful and distracting to try and work through. The severity comes and goes, probably reaches migraine levels a few times a week and more like headache levels rest of the time. The tiredness and aching comes and goes too, I’ve given up on working in the office as it’s a 10-15 minute walk away, but I can work from home. Some days I can walk 10k steps fine, and others I have to have a lie down after getting dressed, aching is too bad to hang washing out, aches to brush hair etc.

The bloods came back normal (I have reviewed actual numbers on the app), other than high white cells and neutrophils which I am always high for, across many years. The GP will get a second opinion on those, and has referred me to an ME specialist to see if they think it’s that, otherwise it could be that Covid triggered something to restart these symptoms.

I’ve started taking amitryptaline to ease the headaches and give more deeper sleep, I find this makes me tired in the day but hopefully that will improve.

Am still working and just trying to get through the headaches but it is difficult some days and have to take some time off when it’s at its worst. Have a sick note to cover those times for the next couple of months now.

There are other drugs similar to amitriptyline that you can try if the next day tiredness doesn’t ease. I’m on gabapentin instead. With pain control it’s often common to need more than one medication so talk to your GP or pharmacist about ways to manage it so you have some pain relief on board throughout the day. For example I am on naproxen, paracetamol and gabapentin.

With regard to fatigue. Try not to push yourself on good days. It’s often advised for chronic fatigue to do only what you can manage on a moderate energy day. That means you still have some left in the tank when you need extra and you’re not pushing yourself into further fatigue.