Extreme Fatigue- How to Cope

[ButterflyPrincess1]

Hi all,

I'm new to this community.

I suffer from a number of invisible illnesses, both physical and mental in origin.

At the moment, I am suffering with extreme fatigue.

Things have gotten so bad that I can barely stand/walk/brush my own hair; let alone take care of my Children.

My Husband is at Home to help with the childcare and other domestic responsibilities and I am grateful for that.

I have had bloods drawn to look for common conditions including anaemia, diabetes, thyroid issues and vitamin and mineral deficiencies.

I will get the results on 2nd August.

All previous bloods have come back clear.

I feel I should point out that my mood is currently stable and my difficulties do not stem from a lack of motivation or simple laziness.

My GP has told me that I may be suffering from M.E/CFS or Fibromyalgia.

I would be most grateful for any suggestions/tips to help me cope in the short-term.

[tooyoungforthis]

Manage the heat due to the weather, exercise lightly and start a hobby - also appreciate how lucky you are x

[Sycamore3 in reply to tooyoungforthis]

tooyoungforthis exercise is definitely not recommended for ME as it can cause post exercise malaise, making symptoms worse!

[Sycamore3]

I suggest you get as much rest and relaxation as you can and try to get your husband to provide you with healthy meals. Herbs can help such as Ginseng and Gingko biloba but they're not a quick fix and are best taken 3 times a day long term.

As there are no medications offered by doctors, except antidepressants and painkillers the herbs shouldn't be a problem. Be as gentle on yourself as you can and know that some people do recover from ME.

[Marz]

Be wary of being given a label that may not be correct. It will be on your notes for ever. CFS - as the name suggests - is a syndrome. Fatigue can often be linked to LOW B12 - Ferritin - Folate - Iron - VitD. These are rarely checked with routine testing and need to be requested.

Also when they test for Thyroid they only test the TSH and declare you normal if it is in range. However it is where you are in range that is SO important. The Thyroid Stimulating Hormone - from the Pituitary - is only part of the thyroid story and the following need to be tested - FT4 - FT3 and Thyroid Anti-bodies Anti-TPO and Anti-Tg.

When thyroid hormones are low - then absorption issues are affected and vitamins and minerals are poorly absorbed and utilised too.

With ME/CFS/Fibro it is so important to rule out Thyroid with the CORRECT testing. If possible you could have the full thyroid Profile tested through Thyroid UK - Blue Horizon - Package 11. The Kit is sent to your home and results e-mailed to you within days.

thyroiduk.org.uk/tuk/testin...

Click onto my name above and you can read the edited version of my journey to wellbeing

Please obtain all copies of your blood test results with ranges - so you can post here - or on Thyroid UK - in a new post so they do not get missed. It your legal right to have copies of your results - Data Protection. Thyroid UK forum here on HU is also part of the NHS Choices website and I have been a member for over 4 years.

GP's will also declare your B12 normal even if at the bottom of the range. It needs to be around 1000 - and anything below 500 can present with Neurological conditions. Again as with thyroid the diagnosis and treatment is poor.

Happy to help

[ukmsmi4]

Hi Becky

If you have ME then Sycamore is right. Exercise will probably make things worse due to PEM (post exertional malaise). This is a symptom unique to ME which means even with simple activity 24-72 hours later any or all of your symptoms can get worse, not just the debilitating fatigue. PEM is not an essential symptom for CFS but can occur with CFS too.

The problem is that with Fibromyalgia, gentle exercise is actually beneficial so this can cause issues if you don't know which condition you have. I know this because I have actually been diagnosed with both ME and Fibro. I also have lower spine issues that are improved slightly with gentle exercise but with ME this can be difficult to do.

Unfortunately any of these issues are diagnoses of elimination which means doctors have to rule out all other possiblities before they can reach a diagnosis of ME or CFS or Fibro. But that said there are many other possible things they could be.

What you need to do is think carefully about ALL your symptoms, no matter how small they may seem and go through your illness history and your full list of symptoms with your GP. They can then make up a list of potential problems and do the relevant tests to rule them out (or not) and only then will they be able to reach a full diagnosis. Be warned though, this can potentially take around a year to do.

Meantime, just in case you do have ME or CFS then you need to start listening to your body and don't overdo things or you will make things worse. Rest as soon as you are aware your body is telling you to do so.

Good luck, hope you get your answers.

Gentle hugs, Margaret.xx

[Marz in reply to ukmsmi4]

PEM is not unique to ME - as people with thyroid issues also suffer. This is due to LOW levels of the only active thyroid hormone T3. T3 is required in every one of the trillions and trillions of cells in the body - so if the level is low in range then there is not enough to go around and things begin to go wrong. Exercise uses up T3 - hence the post exercise slump.

Sadly the T3 is rarely tested on the NHS and so people suffer endlessly. You may wish to check out - Low T3 Syndrome - on the net and also take a look at the book by Dr John Lowe - The Metabolic Treatment of Fibromyalgia on Amazon.

Unfortunately thyroid is eliminated far too quickly from so many conditions as the testing is inadequate and the results poorly understood.

[ButterflyPrincess1 in reply to Marz]

Thanks all.

My blood results should be in by Friday and I will get them next Tuesday.

I will make sure I ask for copies of my test results.

I am aware that any further referral(s) will depend on my test results.

I can definitely identify with PEM; I Had a busy day yesterday and I have woken up feeling as though I've been hit by a bus

[ukmsmi4 in reply to Marz]

PEM isn't just about fatigue though. Because it has the word malaise in it many people mistakenly think it refers to fatigue, but it doesn't. It actually means any or all of the dozens of symptoms that make up ME. In fact, contrary to what most people think, it is perfectly possible to have ME without the fatigue really featuring much, although usually it does feature to some degree. That is why it is wrong to call ME and CFS the same thing as many people do.

I agree about thyroid being too easily eliminated though. The usual test for it on the NHS just isn't appropriate so many people can be borderline but get told they are fine.

Also with a lot of these conditions there can be quite similar symptoms and very often not sufficient testing or in depth testing is done resulting in a lot of misdiagnosis.

[Marz in reply to ukmsmi4]

The TSH test alone is not adequate to diagnose a thyroid issue. Hashimotos - or Auto-immune Thyroiditis - is the most common thyroid condition globally and still doctors resist the testing of the Anti-TPO and Anti-Tg - the thyroid anti-bodies. So how would they know ? Also the FT4 and FT3 need to be tested and should be high in the range. A TSH of around 2.5 indicates the thyroid is struggling.

Like your description of ME - Thyroid problems are responsible for over 300 symptoms in the body and not just fatigue after exertion.

I have looked at your Profile and see you are taking a PPI - this will suppress your B12 absorption and again when B12 is low it can mimic the signs and symptoms of ME. Low Acid can be the cause of Acid Reflux and is very common when Hypo. A result under 500 can present with a neurological symptoms. Take a look at the link below and view the neurological symptoms ......

b12deficiency.info/signs-an...

Click onto Films in the Menu of the above link and see the Doctor who was dying with a neuro-degenerative brain disease - which turned out to be B12 deficiency.

I would also be interested in your VitD level.

I have been on the Thyroid Forum here on HU for over 4 years where there are 41,000+ people looking for answers - and mostly let down by the NHS. I have read many posts with the medication/symptoms list you have - and with perseverance with the testing - mysteries have been solved.

My cousin was a Physiotherapist and stopped working in the 60's having been diagnosed with ME. When I was diagnosed with Hashimotos in 2005 - she decided to be tested and found that she too had the same. Years wasted with an incorrect diagnosis.

I am hoping our discussion will be able to help others reading this thread.

I am not a medic - you may wish to click onto my name and read my Profile and about my journey to wellness. I too was once diagnosed with Fibro - which disappeared once my thyroid and vitamin supplementation was optimal. I take T3 - have weekly B12 injections and take large doses of VitD.

Wishing you better health .....

[ukmsmi4 in reply to Marz]

Interesting you should say all that. I did some years ago have a spell of two bouts of iron deficiency anaemia and two of B12 anaemia. I was given tablets for the iron and injections for the B12. A couple of years ago, because I am largely housebound, I was diagnosed as VitD deficient and had to take prescribed tablets for a year.

But all my tests since then have been above NHS acceptable standards so I have not been prescribed any further courses.

Unfortunately I can't stop taking the PPI as I have acid reflux and it's the only thing that works to stop it. Plus the B12 deficiency was prior to taking the PPI and all blood tests since have been ok for that.

I also believe I am borderline for thyroid issues but no matter how many times I ask the NHS will not do the full test. I once even got as far as persuading the nurse taking the bloods to write the FT4 and FT3 request on the form for the lab to do, but the lab refused to do the test. Given that I've had to give up work I can't afford to pay for private testing so I'm not sure where to go from here under the NHS.

I do actually fit all the many symptoms of ME barring one, the vivid nightmares and of all the things I have been tested for it is the one condition I most closely fit the profile for. Looking back the ME clinic, my GP and I are certain that mine was started by a severe bout of flu and a gut infection some 20 odd years ago but only diagnosed some five or so years ago. But I had the ME before I was deficient in B12 or VitD. To date it seems that ME is the best fit for my problems.

But as you say I am nevertheless open to the possibility that I am no less likely than anyone else to have potentially been misdiagnosed somewhere along the line and always continue pushing for whatever tests I can get that might make better sense of what is really going on. If one day I am told I have something other than ME I will not be in the least bit upset, not least because I sure as hell don't want to live like this. Just relieved to finally know what is really wrong.

[Marz in reply to ukmsmi4]

It makes me sad to read of your struggle. Are you still supplementing B12 and VitD ? The supplements are not too expensive and could make a big difference. Happy to help with which ones.

It is a complete scandal that Doctors are not prepared to seek the root cause of peoples illnesses.

Have you considered reducing the PPI's as they are only intended to be an 8 week course. Betaine HCL is a natural product taken before meals. PPI's are addictive and cause all sorts of health problems and are a multi-million money spinner for BIG Pharma.

Low acid causes acid reflux not high acid. We need high levels of acid in our stomachs to break down proteins and digest foods before passing into the duodenum. When food sits too long in the stomach due to low acid - it begins to ferment - and it is often the upward movement of the fermentation that creates the acid reflux type feeling.

NHS ranges are not about OPTIMAL health. We have to read and learn for ourselves unfortunately. I live in Crete so take care of things for hubby and I having learned from others that know more than me.

If my Premium Bonds come up I will pay for the tests for you....

thyroiduk.org.uk/tuk/testin...

The above link also gives you all the signs and symptoms of low thyroid .....

On the B12 website I posted above - there is a draft letter to send to your GP about B12 obviously. Not sure if you know this but if you have low levels of Iron - Ferritin - folate - B12 and VitD - then the thyroid does NOT work properly. Docs do not learn this at Med School either.

Do take care ....

[ukmsmi4 in reply to Marz]

Thanks Marz for the info, that's very kind of you. I'm a bit jiggered tonight and my head is too muzzy to take in the details of your message but I'll look at it again tomorrow or as soon as I'm a bit more together.

You look after yourself too.

Gentle hugs, Margaret.xx