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Chronic Fatigue/M.E

(21 Posts)
vasillisa Sat 05-Apr-14 11:27:25

Recently diagnosed, after a long time with various symptoms.

Any others who have this - I would welcome your tips and advice on managing it and heading towards good health!

Have just begun to read a few books and talk to others with similar experience. My main current difficulty is balancing p time work and DS who is 4. Feel bad that I have run out of steam when I pick him up in the afternoons after work.

Crashes also affect homelife and DH is spinning a lot of plates with work/study/doing extra dad duties & keeping us all fed and watered. He is a total star but I worry he is on the go so much.

Thanks MNetters x

RockinD Sat 05-Apr-14 12:10:04

Sorry to hear they have given you this dustbin diagnosis. This should only be given if or when everything else has been ruled out. What tests have you had?

In particular, have you had checked, cortisol, vitamin B12, folate, ferritin, vitamin D, a full thyroid screen including TSH, FT4, FT3 and both TPO and TgAB antibodies?

I was diagnosed with CFS three times in 2009/10, twice by hospital consultants and once by my GP. I was told that there was no point having any further tests and offered anti-depressants.

It has taken me five years to prove that my test results showed quite clearly that I was severely deficient in ferritin and vitamin D, deficient in folate and vitamin B12 and also hypothyroid, possibly of pituitary origin.

I am now well on the standard treatment for hypothyroidism. I know from reading internet forums that I am very much not alone in this. Please do not let the NHS write you off.

This is the website you need:

yegodsandlittlefishes Sat 05-Apr-14 12:15:51

I can only echo what RockinD has said (sadly, it is true that CFS can be diagnosed without a more careful look at test restults and other avenues of treatment all too often.)

flowers Glad to hear that your DH is supportive and able to do so much. It is only as much as a lot of mums do, do unless he has any health concerns, the extra parenti g duties shouldn't affect his health adversly, while you do need to keep a balance of heathly exercise (whatever that means for you and extra rest.

mercibucket Sat 05-Apr-14 13:15:33

glad you posted this, RockinD
op, can you tell us all your levels?

Grockle Sat 05-Apr-14 13:23:55


There used to be a long running thread in general health - the title is always to do with spoons. Do you know the spoon theory?

I'm struggling atm - sorry for short post.

Grockle Sat 05-Apr-14 13:28:08

I've just bumped the thread for you - it might have some useful Info on it. It's called 'spooning into summer'

I'm a lone parent with fibro, ME & lupus. I am struggling to hold down my job and keep myself well. I do sympathise. X

DazR Sat 05-Apr-14 19:00:06

Can only echo what Rockin has said - my daughter spent a miserable 18 months with a CFS/ME diagnosis. After I kept pushing for tests she was found to be severely deficient in B12, ferritin, folate and vitamin D. She improved so much when B 12 injections started that she started uni 3 months later. It is a bucket diagnosis and it may not be accurate. Insist on proper testing.

CFSKate Sun 06-Apr-14 09:30:11

Dr Myhill website is good.

this is the spoon thread

If you start visiting ME/CFS forums like phoenix rising or foggy friends, you'll read about the Canadian Guidelines - here is an overview

Here's the agenda of the next ME conference

report on drug trial that helped ME patients, you may need to put the English captions on, or they may come on automatically.

This is Dr David S Bell's severity scale

100: No symptoms with exercise. Normal overall activity. Able to work or do house/home work full time with no difficulty.

90: No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level. Able to work full time without difficulty.

80: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed for activities requiring exertion only. Able to work full time with difficulty in jobs requiring exertion.

70: Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work/do housework full time with difficulty. Needs to rest in day.

60: Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70% to 90%. Unable to work full time in jobs requiring physical labour (including just standing), but able to work full time in light activity (sitting) if hours are flexible.

50: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4 - 5 hours a day, but requires rest periods. Has to rest/sleep 1-2 hours daily.

40: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 50-70% of expected. Able to go out once or twice a week. Unable to perform strenuous duties. Able to work sitting down at home 3-4 hours a day, but requires rest periods.

30: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day, but requires rest periods.

20: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour a day.

10: Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.

0: Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.

mercibucket Sun 06-Apr-14 09:47:15

bloody hell!!

that makes sober reading. i am around 50 and i just take that as normal!! i have an underactive thyroid i consider treated but i see how far i have fallen without realising it sad sad sad

vasillisa Sun 06-Apr-14 12:23:38

Thanks for the posts, have seen GP's who I respect as being those who are investigative types and not brusher offers. Have been having B12 jabs since about 2002 as had unexplained tiredness (one GP just kept saying it was depression when I damned well knew that it was my biology going haywire). B12 helps a lot but kept having unexplained dips in energy between the 3 monthly injections. Gradually has just got worse.

Two lots of bloodtests done last Summer, thyroid function, iron, all the standard things. No idea of levels, but the GP said they were all normal.

Referred to M.E/CFS centre where their GP made a diagnosis after 4 phone conversations about symptoms/patterns (presumably he saw the blood results too). I don't get muscular pain or joint pain. Do get brain fog and boom and bust energy cycles, sometimes end up in bed too weak to even get up to put kettle on.

On Amiltriptyline for sleep which has helped early insomnia and possibly migraines (too early to tell for sure with latter) wonderfully.

vasillisa Sun 06-Apr-14 12:24:20

am a 50 on the scale too.

mercibucket Sun 06-Apr-14 14:10:28

have you read up much about b12 levels? i know a lot of people just inject themselves monthly as they say the 3 month injections and uk version of 'normal' is pretty unacceptable
not an area i know too much about, just read it on thyroid forums
also the link to celiacs with b12 and thyroid problem - celiacs blood test not v reliable

RockinD Sun 06-Apr-14 20:27:31

Many people who are stuck with the NHS's three monthly B12 jabs supplement as well to keep their levels up. Unexplained dips in energy bewteen your B12 jabs could just be that your levels have dropped and you are not having injections often enough. Do you have pernicious anaemia? If you do, you will be more prone to other auto immune conditions, including Hashimoto's Disease (auto immune hypothyroidism).

Never accept that your results are 'normal'. I already have suspicions about yoru GP's management of your B12 issue and think you really need to get copies of all your results, with the reference ranges. You may well be surprised at what you discover.

magso Sun 06-Apr-14 20:28:57

Sorry you have CFS. I also rate the Myhill site recommended by RockingD and CFSKate. I have been following the SHINE protocol recommended by Jacob Teitelbaum in his book 'From fatigued to Fantastic' along side nutritional and supplement advice. I've gone from around the 20% level to the 50% level over the last two years.

RockinD Mon 07-Apr-14 12:48:12

Loking at the scale, when I was diagnosed with CFS I was at about 30% - having fixed the things that were actually wrong ( ferritin deficiency. folate deficiency, vitamin D deficiency, underactive thyroid) I am now at about 95% and that's good enough for me!

vasillisa Tue 22-Apr-14 09:24:14

Thanks for your replies everyone. I must say, despite sleeping better and (touch wood) not having migraines for a couple of months, since I have been taking 10 mg Amitryptiline that I have had more regular crashes and more of the serious end up in bed all day and wobbly when I get up type. Is this pure co-incidence? I started on it after having a couple of crashes in Autumn and then a couple more in Jan/Feb. Through March and April have had 8 crashes. ie since starting the drug. mmm.

Have a GP appointment in early May.

What questions would you ask?

I have a list from the Canadian document on CFS (very useful - the very thin NHS material pales in comparison!) so have some things to ask if they have been specifically ruled out.

I am interested in Dr Myhill's approach, but can't afford a range of tests.
Could I have these done via NHS, or could the GP refer me?

Interestingly, I did try the Paelo diet (read about it on MN) last year for a few weeks and it did really help. Found it difficult to stick to with a job and child thrown into the mix though. When I was tired it just becomes so much easier to sling toast into the toaster. I know that may well be a viscious circle!

Any reviews from MNetters of the Downing-Orr book 'Beating Chronic Fatigue'? Similar approach to Dr Myhill by the sounds.

The week before Easter I had a bad week, in work one day, off the next.

I contacted friends and a volunteer led agency and now have some regular help, which means I can rest for an hour or two each afternoon.

Even though I am working only 4 hours (it's in a busy library - lots of screen and people time which I find draining - hence not being on here for ages) I find that enough to trigger crashes later in the day/next day.

Going to see how I go on in next few weeks, but increasingly thinking I ought to trigger Occ. Health appointment and look at the options.

I really like my job, and want to keep working but it needs to be sustainable.

Sending you all a jar of spoons. Nice silver ones, with fancy handles. Just to cheer you up smile

vasillisa Tue 22-Apr-14 09:41:56

RockinD - I don't have pernicious anaemia. The B12 was started to prevent that, they said it would be likely for me to get it if I didn't have the jabs.

I have argued the toss about frequency with one of the nurses and she insisted that there was no evidence for needing to take it more that every 3 months. ie It should remain stable enough for doing its job re:Iron take up in that time frame.

Does anyone here get it done more often on the NHS?

Funny, I have always had a strong hunch that B vitamins held the key, or a good part of it.

Useful to know that there are other perspectives - on taking it more frequently not just to aid iron absorption but also to help the body function better in other ways. Bit nervous about self injection idea!

Might suggest to GP that we try it as an experiment - doesn't seem that you can overdose on it.

CFS is so tricky, there are such a lot of factors to get balanced. I am optimistic though, been learning to relax and meditate for one thing, using my MP3 player when I rest. Also some Yin yoga via Youtube.

Just try to do one or two positive things each day. Learning, talking to others, practice of new skills.

Must say, (just an observation) quite a few people who have recovered from CFS seem to have taken a year or so off work to concentrate on healing and resting. One said sticking to a routine helped, slow walks outside, breaking the day up into alternate mental/physical/restorative periods.

Currently I have a lot of red and orange in the morning then going greener in the afternoon - for those of you who keep traffic light style diaries!

I'll sign off now - a bit of a splurge, I know, but it helps to get it down, and have feedback.

CFSKate Sun 27-Apr-14 15:36:48

Amitryptiline doesn't suit everyone. ISTR some people are OK on very small doses. I know you said 10mg but I don't know if that is small or not. I've never taken it myself, but maybe try foggy friends or phoenix rising, there are a lot of people there who might know more.

lifechangermum Sun 27-Apr-14 21:24:11

I think your diet is soooo important whatever your diagnosis. Keep away from Sugar it is just poison and try Gluten Free. I believe your health starts with what we put in our bodies. And of course we need regular exercise but it doesn't have to been anything big, it can be a walk around the block, just as long as you do it consistently.

I say these things because I have suffered with a medical condition(neurological) for some years and have had long periods of chronic fatigue and doing these things have helped

CFSKate Mon 28-Apr-14 09:58:58

Exercise is very tricky with ME.

Exercise and ME

"Prof Mark VanNess from the Workwell Foundation explains how damaging aerobic exercise can be for patients with ME/CFS. The Workwell 2 day testing protocol demonstrates the astonishing post exertional amplification of symptoms in ME patients; a hallmark symptom of ME. This damage to the aerobic energy system means that it is utterly counter productive to try to use aerobic exercise, such as graded exercise therapy, to improve health in these patients.

The evidence from the Workwell research is so unexpected and contrary to accepted views of exercise and graded exercise, both in ME and in other illnesses, that many people actually find it difficult to hear and take on-board what he is saying."

Treaclepot Mon 28-Apr-14 10:14:51

Do a very strict exclusion diet then slowly reintroduce. Most people I have treated with ME have had some form of intolerance which exacerbates their symptoms.

Cutting out wheat changed my life.

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