Chronic Fatigue Syndrome or M.E

[Gayle30]

I got diagnosed with this over 3 years ago and have had spells where I have been so unwell and off work for 5 months at a time. Previous to falling pregnant I was having a good spell, sleeping normally and just about ticking over.

In the last few weeks I've felt myself getting more and more exhausted, less tolerant, more pathetic and emotional and apart from hiding away at home I actually don't know what to do with myself.

With CFS comes insomnia, coupled with peeing constantly all night Im getting only a few hours each night. Headaches have been rather demanding lately too because I'm not sleeping. I've not put on any weight yet (odd cause of bump I know) but I think this is because of the CFS. Baby seems to be fine and thriving-it's taking every last reserve I have and I am happy enough, honestly not moaning as long as its ok.

Basically I just wondered if anyone has any advice? My consultant says to rest when I can and sleep when I need. Not easy when your trying to hold down a full time job. Works a royal pain in the bum just now-so busy, but that's life. Pregnant or not.

Just wish I could shake feeling so physically crap. It's only the excitement and love for this LO and my OH that's keeping me going.

Pointless really as nothing apart from a good sleep for a few weeks is going to help. Least I have my birth plan in place and my scan is in 23 sleeps! We are so excited to see D again!!!

Xxxx

 

[wifeywifey]

Hopefully it will get easier for you hun your obviously aware of how to look after urself. I have suffered it so know how hard it can be and couldnt keep working while pregnant it was too hard but I have 2 healthy boys 12 months apart. Point for me I have been "normal" for a while apart from a few bad weeks here and there. Its such a horrible thing but ur strong and will get thru. Pm if you ever need a chat. X

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[Water_Melon]

I'm sorry, I have no idea about this sort of thing, but wanted to say that I hope you end up feeling better soon. It sounds horrible.
They say a very healthy and balanced diet can help with this sort of thing... Might be worth looking into

 

[Leah04x]

I can't relate to this either unfortuantely! But I hope things get better for you soon xx

 

[Sarah7]

I was diagnosed with CFS when I was 12 and didn't complete a 'normal' education because of it and after school couldn't hold down a job. I've only really started to feel better in the last 2-3 years but if I don't keep a regular sleep pattern I notice that I quickly start to feel worse and become far more likely to get sniffles and colds and stiff joints and things.
I found it horrendous enough just getting through my teenage years with it, but I cannot imagine it on top of the pressure of being pregnant and working full time. My doctor told me to be careful with my sleep and make sure I eat enough and just keep on top of everything like I used to have to just to be on the safe side in case the pregnancy sort of aggravates it as you never get an 'all clear' from it.
Only thing I could possibly suggest is to rest when you can as much as you need, and if your work understand your CFS anyway they hopefully won't be anything but sympathetic to you whilst it's combined with pregnancy. When I was really unwell I was told to cut white breads/pastas/rice etc out of my diet and always go for wholegrain and I found that incredibly helpful, and still eat that way now. It really helps with energy levels.
Sorry if that was a bit rambley, absolutely knackered this morning!
If you ever want to chat, feel free to PM me
Sarah
xx

 

[maybe baby]

Sorry you're going through this hun, I always find sleep easier after exercise in the fresh air maybe take a nice walk this evening if you feel up to it?

Xx

 

[willowwisp]

Sorry sticking my nose in here.

I would recommend a planned diet, see a nutritionist if you can, your GP should be able to help you with this. Diet and getting the correct balance of nutrients is vital for recovery, and especially more so if you are pregnant. The more fruit/veg/nuts/wholegrains you can eat and the less sugar/refined carbs/dairy the better you will feel.

In conjunction with this a blinking good osteopath who specialises in ME/CFS will be able to make a massive difference to how you feel. I usually recommend both dietary and osteo treatment in parallel and with this I've managed to get clients feeling much better, back to work etc.

 

[jen9984]

I can't help too much with CFS and pregnancy, but I have a lot of experience of CFS alone. I had it for about 7 years, after a nasty virus, and it was seriously debilitating. The only thing that really helped was to rest properly, and then to do graded exercise in time.

I can't imagine what it must be like to have CFS AND be pregnant. Though since I've fallen pregnant, the tiredness I have felt is incredibly similar to CFS and I often feel physically rubbish again. I think if I had both, it would be difficult to tell what was pregnancy and what was CFS...

So, not much help, but then I think you already know that you just need to rest, rest, rest, and look after yourself. And I know how frustrating that can be!!

 

[wifeywifey]

Sorry sticking my nose in here.

I would recommend a planned diet, see a nutritionist if you can, your GP should be able to help you with this. Diet and getting the correct balance of nutrients is vital for recovery, and especially more so if you are pregnant. The more fruit/veg/nuts/wholegrains you can eat and the less sugar/refined carbs/dairy the better you will feel.

In conjunction with this a blinking good osteopath who specialises in ME/CFS will be able to make a massive difference to how you feel. I usually recommend both dietary and osteo treatment in parallel and with this I've managed to get clients feeling much better, back to work etc.

Its not always that easy, nhs dont always take it seriously I had to see over 10 doctors to get taken seriously I then got referred to cbt that started at 9 am which I had to travel 2 hours on public transport to get there. When I asked to see someone about my diet I was given a couple of leaflets and told I dont need to see someone. When you are struggling so bad keeping that fight for the help is hard. It is good advise just a shame nhs dont care.

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[Sarah7]

Sorry sticking my nose in here.

I would recommend a planned diet, see a nutritionist if you can, your GP should be able to help you with this. Diet and getting the correct balance of nutrients is vital for recovery, and especially more so if you are pregnant. The more fruit/veg/nuts/wholegrains you can eat and the less sugar/refined carbs/dairy the better you will feel.

In conjunction with this a blinking good osteopath who specialises in ME/CFS will be able to make a massive difference to how you feel. I usually recommend both dietary and osteo treatment in parallel and with this I've managed to get clients feeling much better, back to work etc.

Its not always that easy, nhs dont always take it seriously I had to see over 10 doctors to get taken seriously I then got referred to cbt that started at 9 am which I had to travel 2 hours on public transport to get there. When I asked to see someone about my diet I was given a couple of leaflets and told I dont need to see someone. When you are struggling so bad keeping that fight for the help is hard. It is good advise just a shame nhs dont care.

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Absolutely agree, NHS just generally don't seem to give a toss. My parents and I were left to deal with it on our own, my own GP could only do so much and no consultants believed me - just thought I was a lazy teenager! As a result I received barely any education and no medical care. If you have the money to get private help from osteopaths and nutritionists then great, but otherwise it's a long hard battle to just get out of bed in the morning let alone fighting for what you ought to be entitled to.

 

[ceebee]

Hi hon

I don't have CFS exactly, but I have a chronic health condition where extreme fatigue is one of the symptoms and I'm really suffering with my pregnancy too. I have been unable to work due to my health problems for years, so I can't imagine what it must be like holding down a job too.

I'm afraid I don't really have any advice either as I'm struggling to get through each day myself. All I can say is be as kind to yourself as possible and don't push yourself to anything you don't have to. It might be worth speaking to your GP as they might recommend altered hours/adjustments at work if they're sympathetic and helpful. Also have you spoke to your employers? They might allow you to have some rest time during the day or something...

Anyway, just wanted to say that you're not the only one who is suffering and I think you're amazing for keeping going like you do. I keep telling myself it will all be worth it in the end

All the best xxx

 

[wifeywifey]

A bit off topic Its amazing how many people suffer and yet is so rarely spoken about even between sufferers. I know I feel like its a dirty little secret and avoid telling employers and friends etc because of the bad press. I think its time the government and nhs took some action to raise awareness with gps etc and to give sufferers the help they need. I was on incapacity benifits and they decided I wasnt ill enough to be off work and forced to get a job which caused a huge relapse because they dont recognise its effects on everyday life.
Sorry for the rant just gets me mad that so many ppl need help and its just not offered.

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[willowwisp]

Sorry sticking my nose in here.

I would recommend a planned diet, see a nutritionist if you can, your GP should be able to help you with this. Diet and getting the correct balance of nutrients is vital for recovery, and especially more so if you are pregnant. The more fruit/veg/nuts/wholegrains you can eat and the less sugar/refined carbs/dairy the better you will feel.

In conjunction with this a blinking good osteopath who specialises in ME/CFS will be able to make a massive difference to how you feel. I usually recommend both dietary and osteo treatment in parallel and with this I've managed to get clients feeling much better, back to work etc.

Its not always that easy, nhs dont always take it seriously I had to see over 10 doctors to get taken seriously I then got referred to cbt that started at 9 am which I had to travel 2 hours on public transport to get there. When I asked to see someone about my diet I was given a couple of leaflets and told I dont need to see someone. When you are struggling so bad keeping that fight for the help is hard. It is good advise just a shame nhs dont care.

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Helping yourself and not relying on the NHS is not expensive. All you need is a family member to come over and help you create healthy meals for the freezer, so you can just whip out a good meal when your feeling pants rather than scoffing convince foods (so easy to do when your unwell) which hinder and not help your health.

There is an ME support group: http://www.mesupport.co.uk/ There is TONS of articles and whilst medical research is limited there are loads of people sharing their experiences out there, you don't have to be loaded to read the internet and pick up hints and tips and find out what helped others.

Take your partner/parent/sibling with you to the doctor. No GP should refuse you a referral to a nutritionist if you are struggling with a long term health problem, AND if you are pregnant, well that only adds to the need to see someone. If you don't feel well enough to kick up a fuss then a fresh relative to fight your corner is usually successful. Failing that a good old letter of complaint to the surgery should do the trick. A private nutritionist isn't even that expensive, I see clients from £30 and with ME patients it's usually a one off to create a diet plan, support over email with problems, I vary rarely see patients multiple times.

A ruddy good adrenal supplement (Nutri Adreno Extra is fabulous if your not pregnant at the time of taking) if you can stretch to a short course, it can be brought online for £24, one pot will last 60 days at the full dose (2 capsules), or up to 120 days at the lower dose. I usually suggest 30 days at full and 60 days at half, so it's £8 a month for a course.

I have several close relatives whom have struggled with this, as well as numerous clients so my experience is personal as well as extensive. It's a frighteningly common condition. But nothing can be done unless the patient actually wants to get better, they have to want to fight for their health rather than resigning to doom and gloom that everything is black and the world against them. There is no magic pill for recovery, its something that has to be battled for, by the patient.

 

[Sarah7]

A bit off topic Its amazing how many people suffer and yet is so rarely spoken about even between sufferers. I know I feel like its a dirty little secret and avoid telling employers and friends etc because of the bad press. I think its time the government and nhs took some action to raise awareness with gps etc and to give sufferers the help they need. I was on incapacity benifits and they decided I wasnt ill enough to be off work and forced to get a job which caused a huge relapse because they dont recognise its effects on everyday life.
Sorry for the rant just gets me mad that so many ppl need help and its just not offered.

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Sorry to stay off topic but that is exactly how I feel, I could have written that myself. It's the dirty little secret in my life too that I feel so ashamed about and hate people being aware of. I too was chucked constantly between incapacity benefit and job seekers allowance once every 6 months for years because I wasn't unwell enough for the benefit yet I wasn't healthy enough for the work as it made me ill within days every time.
Awareness is definitely needed. It shouldn't be swept under the carpet and be forcing so many people to quietly get on with something that can be massively debilitating and it does effect entire families. Recognition would be a massive step.

 

[wifeywifey]

Sorry sticking my nose in here.

I would recommend a planned diet, see a nutritionist if you can, your GP should be able to help you with this. Diet and getting the correct balance of nutrients is vital for recovery, and especially more so if you are pregnant. The more fruit/veg/nuts/wholegrains you can eat and the less sugar/refined carbs/dairy the better you will feel.

In conjunction with this a blinking good osteopath who specialises in ME/CFS will be able to make a massive difference to how you feel. I usually recommend both dietary and osteo treatment in parallel and with this I've managed to get clients feeling much better, back to work etc.

Its not always that easy, nhs dont always take it seriously I had to see over 10 doctors to get taken seriously I then got referred to cbt that started at 9 am which I had to travel 2 hours on public transport to get there. When I asked to see someone about my diet I was given a couple of leaflets and told I dont need to see someone. When you are struggling so bad keeping that fight for the help is hard. It is good advise just a shame nhs dont care.

Sent from my E15i using Tapatalk

Helping yourself and not relying on the NHS is not expensive. All you need is a family member to come over and help you create healthy meals for the freezer, so you can just whip out a good meal when your feeling pants rather than scoffing convince foods (so easy to do when your unwell) which hinder and not help your health.

There is an ME support group: http://www.mesupport.co.uk/ There is TONS of articles and whilst medical research is limited there are loads of people sharing their experiences out there, you don't have to be loaded to read the internet and pick up hints and tips and find out what helped others.

Take your partner/parent/sibling with you to the doctor. No GP should refuse you a referral to a nutritionist if you are struggling with a long term health problem, AND if you are pregnant, well that only adds to the need to see someone. If you don't feel well enough to kick up a fuss then a fresh relative to fight your corner is usually successful. Failing that a good old letter of complaint to the surgery should do the trick. A private nutritionist isn't even that expensive, I see clients from £30 and with ME patients it's usually a one off to create a diet plan, support over email with problems, I vary rarely see patients multiple times.

A ruddy good adrenal supplement (Nutri Adreno Extra is fabulous if your not pregnant at the time of taking) if you can stretch to a short course, it can be brought online for £24, one pot will last 60 days at the full dose (2 capsules), or up to 120 days at the lower dose. I usually suggest 30 days at full and 60 days at half, so it's £8 a month for a course.

I have several close relatives whom have struggled with this, as well as numerous clients so my experience is personal as well as extensive. It's a frighteningly common condition. But nothing can be done unless the patient actually wants to get better, they have to want to fight for their health rather than resigning to doom and gloom that everything is black and the world against them. There is no magic pill for recovery, its something that has to be battled for, by the patient.

If only it was that simple. When you get 60 pound a week 30 is d lot to pay and eat healthy, I never had family support and had to worry about finances etc on my own.
I know I battled this and came out the other side on my own. There is so much conflicting advise out there that sometimes its hard to pick what works out of what doesnt and to be quite frank ask anyone who has suffered if its as simple as that they wont agree. Im leaving this thread alone now as its ur naieve opinions that make this subject so taboo a couple of pills, veg and a positive mental attitude wont get you better. I wish it was that simple.

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[willowwisp]

Sorry sticking my nose in here.

I would recommend a planned diet, see a nutritionist if you can, your GP should be able to help you with this. Diet and getting the correct balance of nutrients is vital for recovery, and especially more so if you are pregnant. The more fruit/veg/nuts/wholegrains you can eat and the less sugar/refined carbs/dairy the better you will feel.

In conjunction with this a blinking good osteopath who specialises in ME/CFS will be able to make a massive difference to how you feel. I usually recommend both dietary and osteo treatment in parallel and with this I've managed to get clients feeling much better, back to work etc.

Its not always that easy, nhs dont always take it seriously I had to see over 10 doctors to get taken seriously I then got referred to cbt that started at 9 am which I had to travel 2 hours on public transport to get there. When I asked to see someone about my diet I was given a couple of leaflets and told I dont need to see someone. When you are struggling so bad keeping that fight for the help is hard. It is good advise just a shame nhs dont care.

Sent from my E15i using Tapatalk

Helping yourself and not relying on the NHS is not expensive. All you need is a family member to come over and help you create healthy meals for the freezer, so you can just whip out a good meal when your feeling pants rather than scoffing convince foods (so easy to do when your unwell) which hinder and not help your health.

There is an ME support group: http://www.mesupport.co.uk/ There is TONS of articles and whilst medical research is limited there are loads of people sharing their experiences out there, you don't have to be loaded to read the internet and pick up hints and tips and find out what helped others.

Take your partner/parent/sibling with you to the doctor. No GP should refuse you a referral to a nutritionist if you are struggling with a long term health problem, AND if you are pregnant, well that only adds to the need to see someone. If you don't feel well enough to kick up a fuss then a fresh relative to fight your corner is usually successful. Failing that a good old letter of complaint to the surgery should do the trick. A private nutritionist isn't even that expensive, I see clients from £30 and with ME patients it's usually a one off to create a diet plan, support over email with problems, I vary rarely see patients multiple times.

A ruddy good adrenal supplement (Nutri Adreno Extra is fabulous if your not pregnant at the time of taking) if you can stretch to a short course, it can be brought online for £24, one pot will last 60 days at the full dose (2 capsules), or up to 120 days at the lower dose. I usually suggest 30 days at full and 60 days at half, so it's £8 a month for a course.

I have several close relatives whom have struggled with this, as well as numerous clients so my experience is personal as well as extensive. It's a frighteningly common condition. But nothing can be done unless the patient actually wants to get better, they have to want to fight for their health rather than resigning to doom and gloom that everything is black and the world against them. There is no magic pill for recovery, its something that has to be battled for, by the patient.

If only it was that simple. When you get 60 pound a week 30 is d lot to pay and eat healthy, I never had family support and had to worry about finances etc on my own.
I know I battled this and came out the other side on my own. There is so much conflicting advise out there that sometimes its hard to pick what works out of what doesnt and to be quite frank ask anyone who has suffered if its as simple as that they wont agree. Im leaving this thread alone now as its ur naieve opinions that make this subject so taboo a couple of pills, veg and a positive mental attitude wont get you better. I wish it was that simple.

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Gosh well if your going to get personal about it and start name calling. As I said I have supported several close (immediate) family members through ME and out the other side. There is nothing naive about my personal experiences, or my experience treating others. I only posted on this thread to attempt to help, I shall refrain from doing so in the future.

 

[cosmicgirl]

Talking about diet and chronic fatigue - I don't have it but my best friend in uni has. She grew all her own veg and swore by it. Her diet put mine to shame but she said that she felt 10000 better once she had re evaluated her diet.
That's all I know about the subject, hope it helps someone.
Oh and she also said that growing her own veg saved her a fortune!! I'm aiming to follow in her footsteps (if oh will agree to me getting a small greenhouse ) x

 

[wifeywifey]

I thought I was over sensitive.

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[Sarah7]

This has all gone a bit off topic and probably descending into less and less helpful territory for the OP. I believe that even if someone has helped numerous people with a condition that still doesn't mean they will know everything about it and should realise the struggle involved for those who are living with it day to day. A good diet and all of that stuff will obviously go some way to helping with energy levels, and an osteopath may help some, but it is a lot more than that to cope daily. There is a definite lack of support from the NHS and even if you have family it doesn't help. I was a child and always had parents with me for appointments and that does not make doctors take you more seriously or make you more guaranteed to receive any help. Shout as loud as you want and sometimes the people you need to listen still won't. THere are many approaches to dealing with CFS and similar illnesses, and some work for some and don't work for others. It is an incredibly varied illness with some people able to work, and some left bedridden for a decade. There is no miracle cure but it is just down to finding what works for you, the same does not work for all.

Cos - if you grow veg if you like courgettes make sure you grow some. They are easy and my god you'll be living off them! 4 plants get you more than a family can eat over a summer, they're truly insane and taste amazing. You'll never buy one in a shop again

 

[jen9984]

I can empathise with the "dirty little secret" thing - I used to feel so misunderstood or like I was a hypochondriac or something. It's a lonely illness to have

Again - just want to say that you're really not alone. I'm always surprised at how many people have suffered from this in some way when I start talking about it. Doesn't stop it being rubbish though! ("Rubbish" was my favourite CFS word - seemed to sum up so much).