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DH ME / chronic fatigue syndrome diagnosis imminent

(28 Posts)
happygelfling Sun 20-Oct-19 01:13:37

DH has been unwell for three months. Our GP has ruled out everything else and we are expecting an imminent diagnosis of ME / chronic fatigue syndrome.
Today was a real eye opener for me about how life might be in our future.
We have two children: DD (8) and DS (5.5).
DH dragged himself out of bed, with a huge effort, for dinner this evening, ate less than half what he would usually eat, then had to go back to bed because the children were too noisy and he was too tired.
He is not himself. Usually he is the most active and engaged Dad and supportive husband I could wish for.
I feel very alone. I don't know how to explain this to the children. His parents just don't get it - they make unhelpful comments which imply they think he's making it up.
I have a demanding job which I love, but I am wondering if I need to reconsider...
Our family life is going to be extremely challenging if he can't contribute (time and emotional help).
Thanks for reading my offloading!
I would welcome any advice or suggestions about how to deal with this.

OP’s posts: |
JeffreyJefferson Sun 20-Oct-19 01:17:57

I am so sorry. ME is horrific. cakeflowers for you all. It’s tough.

AlexaShutUp Sun 20-Oct-19 01:30:29

No easy answers, OP. It's a horrible illness which can devastate lives. I know a few people who have suffered with it.

On the plus side, most of them have made a significant recovery, although I don't think any of them would say that it has actually gone. The acute (i.e. totally debilitating) phase lasted between three months and three years for each of them, but they are all now able to live reasonably normal lives. They do have to pace themselves and take care not to overdo it as there is always a risk that they could relapse. Two of them manage to hold down a job.

Sadly, one of my former colleagues has been ill for several years now, with very little relief. She is generally unable to get out of bed, even for meals. She does have short periods when she is a little less unwell, but no sign of any longer term recovery as yet. I believe that she has found some alternative therapies somewhat helpful - acupuncture, if I remember correctly.

It's obviously awful for your husband but I think it's important to acknowledge that it's very difficult for you and the children as family members as well. Your whole life is turned upside down with this sort of illness. The only advice I can offer is that you shouldn't try to cope on your own. Ask friends and family for help. I ended up doing quite a lot for a close friend when her DH was sick, as did many other people. I think it was hard to ask at first, but actually, we were glad to be able to help out. You need emotional support for you too, because you will no doubt feel angry, sad, frustrated and lots of other emotions, so you will need to be able to vent sometimes.

I hope that he starts to feel better

BlankTimes Sun 20-Oct-19 02:16:55

A family member has had debilitating fatigue for several years. They have tried all sort of things recommended by the medical community and friends.

The one that appears to have made the most difference is a one a day Multivitamin and Mineral supplement, Aldi's own. It took about 6 weeks for them to feel a bit more with-it and be able to take an interest in things.
It's not been a cure by any stretch of the imagination, but it's lifted the debilitating feeling of lethargy so they can at least interact with other people.

Also, daily fresh air even if it's on a chair outside the back door was found to be beneficial.

Have you heard of the Spoons Theory, it may help other people to understand his fatigue.

happygelfling Sun 20-Oct-19 09:16:38

Thanks so much for your kind and supportive messages.
Yes, I find asking for help difficult and I will need to get better at this!
I like the spoons analogy - thanks. I think it will definitely help to explain it to the children (and probably some adults too!).
He's managed to get out of bed today (so far).
I just can't stop thinking about how much the children and I are going to miss the "real" DH...
Thanks again for your posts. I really appreciate the support.

OP’s posts: |
WomensRightsAreContraversial Sun 20-Oct-19 09:20:23

Spoons theory does explain stuff well. Your might like the original author's website too, which I think is called but 'you don't look sick'

Grasspigeons Sun 20-Oct-19 09:22:09

Can you mske sure his vitamin b12 has been tested in and amongst the finding out whats wrongm (and vitamin d) It may be he needs injections and or supplements. My sibling has chronic fatigue and had low b12 and the injections help.

WomensRightsAreContraversial Sun 20-Oct-19 09:23:23

I'd say be prepared that some people think it's 'all in the head' too. If you're into scientific papers then have a read up. CFS/ME is where the mitochondria in cells don't work like they should. They're the bit of the cell that provides energy.

mge Sun 20-Oct-19 09:25:15

I know two people who have found the Lightening Process really beneficial. It might be worth looking at.

AlexaShutUp Sun 20-Oct-19 09:25:55

YY to the B12 injections. I have a friend who found these immensely helpful.

halvincarris Sun 20-Oct-19 09:31:55

The lightening process. Completely cured my DH of all his ME/CFS symptoms of which he had been suffering for nearly 10 years.

Such a horrible, isolating illness., Be ready with all the support, together it is possible to beat this.

Good luck xx

NaToth Sun 20-Oct-19 12:04:10

OP, what has been excluded to leave you looking at CFS/ME?

Did this come about suddenly out of the blue, after an illness, or gradually?

JeffreyJefferson Sun 20-Oct-19 17:37:18

the lightening process is a load of crap. and that’s coming from someone with ME.

JeffreyJefferson Sun 20-Oct-19 17:40:11

I take 2 B12 tablets a day and 2 of these tablets a day. Both very good. I also take CBD oil everyday and i strongly suggest you look into that because it’s is very very good.

happygelfling Sun 20-Oct-19 21:33:48

Thank you all so much for the helpful suggestions.
DH has previously had vitamin D deficiency so is pretty clued up (now) with the supplements. He takes something similar to the bio kult and it has really helped some previous post-viral ibs symptoms that he always seemed to have after every cold or other mild illness.
I haven't come across CBD oil - will look into that, thank you. I'll also suggest he asks the doctor about the B12 injections. Not come across the lightening process either.
Regarding how it started: it was a cold/chest infection in the summer. It affected him more than normal - it triggered his asthma (which is normally very, very mild) so lots of investigations into what might be affecting his breathing. Then he came out in hives all over so has been on antihistamines for those for over a month, and the hives still return if he stops taking those. Through all this he has been really low on energy - going from an athletic sports enthusiast to having to lie down for the rest of the day after walking half a mile. (At least he has been able to walk half a mile! Though he couldn't do that at the moment.)
He's had various blood tests and x-rays looking for vitamin deficiencies, some specific viral infections, general signs of infection, cancer markers, breathing / chest complications. He's had two lots of antibiotics, steroids, anti-fungals and antihistamines. Now just on the antihistamines. He's had another cold this last week, which has really knocked him back.
Our GP has been lovely, and seems to have tried everything to work out what the problem is. He is left with a post-viral fatigue, turning into chronic fatigue / ME diagnosis as he seems to have excluded everything else.
Thank you again, everyone, for your supportive comments and suggestions.

OP’s posts: |
flashbac Sun 20-Oct-19 21:48:12

Has Lyme disease been ruled out?

PurpleDaisies Sun 20-Oct-19 21:53:46

The lightening process is unscientific nonsense masquerading as a miracle cure. I’d avoid.

Sorry you’re going through this. I had CFS and was lucky enough to recover. CBT and pacing really helped me in managing how I was feeling. It’s so difficult not knowing how long it will last and it’s easy to get very down.

purpleme12 Sun 20-Oct-19 22:59:59

Hello. I'm so sorry to hear about this.
I'm interested because I have felt like I have no or very little every for months and haven't been able to pick it up. Perhaps not as bad as your husband? The doctor hasn't been able to pinpoint a reason from my blood tests so just because of that he's suggested ME? Although I'm not convinced by this but I worry don't know why it is either

So I hope you don't mind if I placemark

MsPepperPotts Sun 20-Oct-19 23:38:02

@happygelfling Has your DH ever suffered a head injury whilst playing sport or any athletic pursuit.

Here's a link to how I found out that I did not have CFS/ME but Hypopituitarism caused by severe Head Injury(I fell off a horse and was told I had damaged the soft tissue around the top of my spine) would take another 15years to get the correct diagnosis. In simple terms Damage to Pituitary Gland from head injury.

I asked to be referred to a Pituitary Specialist(Endocrinologist) who was all too aware of people being misdiagnosed with CFS actually have Pituitary damage. It controls so many hormones that are essential for normal life activity
He could have suffered the head injury years before and it could be so insignificant he may not recall it.

It is worth pursuing the request for a referral to an Endocrinologist even if it rules out this issue.

Bigbopboo Mon 21-Oct-19 01:04:44

OP are you sure all other causes have been ruled out?

An itchy rash has with severe fatigue makes me think of conditions like Hodgkin lymphoma. Has he lost weight, or been suffering with sweats?

This must be such a difficult time for you.

ScarletAnemone Mon 21-Oct-19 22:36:42

He needs to rest, rest, and more rest. No dragging himself out of bed. This chart from a recent survey by ME Action shows just how important rest is: people who try to keep going get worse, often a lot worse. Unfortunately lots of GPs give bad advice which is why so many of us get so ill once the symptoms have started.

purpleme12 Mon 21-Oct-19 22:42:00

This is worrying. I can't rest when I'm a single mum and I can't let my child down.

Well I don't even think it can be ME for me and yet I don't know why I've got way less energy of course

happygelfling Mon 21-Oct-19 23:36:31

Thanks again everyone.
DH is going to the doctor again tomorrow and we'll see what other ideas he has.
Lyme disease is a good thought, thanks.
No head injury history, but sounds like a good one to check!
He thinks he's had a test for lymph node stuff - might include Hodgkin lymphoma? He'll ask the doctor tomorrow.
He has enrolled on an online CBT course from his employer. (I was a bit sceptical of an online course but he says it's getting excellent reviews.)
I think he's finally admitting that he needs to rest. He enjoys playing with the children though... It's so difficult.
@purpleme12 - I hope your doctor works it out and you're recovering soon.
Thanks again everyone for your ideas and supportive messages.

OP’s posts: |
WalnutBerry Wed 23-Oct-19 21:33:52

My cousin had ME/CFS and is doing well, works part time and renovating a house. She found it beneficial to know her blood type and eat for her type.

I'd be doing a total elimination diet - low FODMAP, gluten, dairy, sugar, low histamine. If nothing else you will be giving the body rest and getting the best from it. Tonnes of rest. Don't think about anything but rest and recover for several months.

Drink lots of water, the lungs need water (I have a lung condition and a higher number of mast cells which produce histamine than normal people) and this is the number one thing I notice if I don't do. Echinichea is also good for the chest, as seems to be vitamin C. I assume he has had the flu jab.

The antibiotics and steroids will have taken a toll. OP I have read that probiotics produce histamine, except this one which is safe to use: L. Plantarum.

Walking is the best exercise for lungs, as it clears them out. Not saying it's comparable, but I feel grey and blah if I don't.

WalnutBerry Wed 23-Oct-19 21:40:36

The other vitamin to mention is Co-Enzyme Q10. It is an antioxidant that helps generate and release energy in the mitochondria of your cells. It decreases with age. I notice a difference when taking it.

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