My partner doesn't believe my illness is real.

[coffeeoclock]

Boyfriend and I are both early 20's, been together 3 years and lived together for 2.

I've been diagnosed (after a long battle for a year of going back and forth to the GP for tests!) with Chronic Fatigue Syndrome (ME). I've had the diagnosis for a year now and lately my health has been declining and I've really been struggling to get out of bed everyday before 5pm. If I get woken early or I try to get up early (as I've done many times) I will get very dizzy, have vertigo and be on the brink of collapse. My partner believes that part as he can see how white I go and that I need to lay down but he doesn't seem to believe that CFS is a chronic illness. He tells me to change my lifestyle and diet and that I just need a 'purpose' so I can snap out of it.

Fair enough regarding living a healthy lifestyle- I already do! I'm a slim size 8, pescatarian, drink loads of water and my blood-work always comes back incredibly positive and healthy.

It bothers me how he never has a sympathy. He seems to think I don't try or I don't want to get better. I've explained that I don't want to spend my life in bed exhausted unable to do anything but he doesn't think I try hard enough.

I can't work at the moment and claim benefits because of it and he hates that too. I do the majority of housework as he brings in most of the income even if I feel awful!

I've taken him to the GP with me and had the GP explain it to him but he doesn't trust doctors and thinks that you can heal your body with your mind and that doctors just want to keep us ill etc.

What can I do?

How's your diet? I'm asking because DD was diagnosed with CFS when she was doing slimming world. Eventually she fell by the wayside, will eating the fruit and vegetables but stopped using the low calorie spray and doesn't drain her mince but once she did she started feeling less tired . She's still suffering but not the the extent that she was.

Would it be worth looking at your diet?

lately my health has been declining and I've really been struggling to get out of bed everyday before 5pm. If I get woken early or I try to get up early (as I've done many times) I will get very dizzy, have vertigo and be on the brink of collapse

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Hi OP, there are periods with the disease when you really need more rest than you may think. If you are doing housework, and going out sometimes in the evenings, these activities may well cause you more after effects (Post Exertional) than you realise. The pallor is very recognisable. Getting enough rest in the early period of ME can save worsening of symptoms long term. I know it's not any fun, but rest (and pacing) is really vital if you seem to be getting worse.

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Maybe some of the info on these pages could be used to educate your partner. I struggled alone for most of the disease, even in the early worst years, couldn't move anything at times, except eyelids, went without food as I couldn't get to the kitchen..... it was gross neglect of care, without any practical help. But I remember thinking how terrible it must be to share accommodation with someone who didn't 'believe' I was ill, let alone that ill.

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But some people have ‘cured’ themselves of cancer - ie eschewed conventional cancer treatment and treated themselves

A great many have died, still hopeful.

But hey, it must be very reassuring to believe that other people's serious diseases can be 'cured' by psychology, or coaching from an enthusiastic amateur.

And coaching is a big business. Hope sells so well.

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I'm dyspraxic (stick with me, aware ME and dyspraxia are completely different). What is similar is that there are things I simply cant do, and some things I will do, but never do well. In our early 20s as gf and bf, DH used to be v impatient and not at all understanding: Why couldn't I just hand uni work in on time, remember where I'd put the USB stick with my dissertation on, back files up, leave the house within two hours etc.?!!

Well, a few years later we went to visit a friend of mine, who is also dyspraxic, and her husband. And somehow seeing how her husband just compensated for her struggles- carrying her train ticket so she couldn't lose it, reminding her where her handbag was etc - transformed my partner's outlook.

If you have an otherwise caring, supportive and joyful relationship OP, then he will have a similar moment where he does get it. Mine is now the fantastic, supportive partner I need and we are equal but different partners with our own strengths. Some of mine, like being cheerful and having a good phone voice for when we need to call the council or something, might be a bit intangible, but are equally as valuable.

Good luck OP.

colourmagic MS is an autoimmune disease. Completely unlike CFS.

colourmagic MS is an autoimmune disease. Completely unlike CFS

I didn't say that MS was like CFS. I said the cause of MS is not known.

And MS is not necessarily "completely unlike CFS". There are overlaps in symptoms. And some research has identified damage to myelin sheath in ME. They are not the same disease.

Please refer to the list of research studies I posted earlier.

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I was misdiagnosed with cfs/me for more than 15years.
My symptoms were severe.
It took a long time and a lot of research on my part to find that I have Hypopituitarism caused by TBI(traumatic brain injury).... Confirmed by Endocrinologist.

He said the he sees lots of people who have been misdiagnosed with cfs/me when in fact it's damage to the Pituitary gland in the brain. There a number of reasons why this can happen.

I have severe Adult Growth Hormone Deficiency, Hypothyroidism, Secondary Adrenal Insufficiency....the symptoms you describe @coffeeoclock are very similar.
I would ask for a referral to an Endocrinologist.

"Some of the world's top medical scientists are now researching ME. It really is not necessary for enthusiastic but uninformed members of the general public to continue imaginatively speculating and pronouncing on what they imagine ME/CFS is, or might be, and what to do about it.

There is more than enough misinformation out there already."
Exactly this..

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Agreeing with a lot of people here. The problem with CFS is that 1) it's an 'invisible' condition, 2) understanding of it is still emerging (let's face it, years ago if was stigmatised as 'yuppie flu' !)

I had a friend with it and the physical elements are incredibly scary, random in their occurrence, and life affecting. I'm not going to lie, I did notice a significant improvement to her ability to cope and self manage with her condition once she started improving her social context/socialisation and even managed to start a relationship despite all the pain, fatigue and sleeping problems.

I think there is a psychological element to helping yourself manage the condition i.E. not ignoring the normal human needs of social contact, spiritual fulfilment, productivity etc. Things like emotional stress and stressful home environment seems to make symptoms worse/less easy to manage.

An idea popped into my head overnight (sometimes I worry about Mumsnet posters and their welfare after I read their post!). Inspired by a meme I saw (please don't eye roll!) maybe some kind of craft activity would mean that OP would start getting a sense of having 'done something' on days when CFS symptoms are really limiting everything? Anyway, this meme advocated doing crochet or knitting so at the end of the day when someone goes to bed they can look at that bit of craft and think 'well, no matter how crippled by pain/fatigue/depression etc I have been, I have changed the world by producing the X bit of craft' - so basically it's a focus on possitive activity at a level that's achievable.

Maybe OP could start doing a bit of craft e.g drawing/knitting/sewing etc every day? Something that can be done sat down or in bed, isn't too heavy to carry or do (to prevent additional fatigue!) - something that gives her enjoyment just for her and no one else, and no matter how slow the progress, every day she can see how the craft she is doing is developing.

Housework is all fine and dandy, but it's heavy work, and let's face it we all know that things need doing again and it's endless and not everyone even enjoys it! Okay, full disclosure, I'm lucky enough to have a cleaner, I hate housework!

I had such bad CFS that even lying in bed was exhausting. I couldn’t even deal with bedclothes, I was too tired to ensure a sheet on top of me. So I was in a right mess and only 18.

And now I’m fine and have been since 22!!

There are things you can do to help yourself, if anybody’s reading this. Please do look at diet because if you can get as many vitamins into you as possible it really will have a positive effect.

I juiced constantly, was taking in 1000x rda of vitamins a and c. Cut out gluten. Took vitamin d and probiotics.

And of course you feel better psychologically because you have some control. So although your boyfriend is being a bit of a sick, he does have a point about diet, and even the most exhausted person can drink a juice. Difference I suspect is my mum adores me and did all the juicing for me, you would need help with that.

Something in the brain just doesn't quite work right I would suspect and fatigue is a cycle that is hard to break once in it May I? Some ANECDATA for you!

I contracted ME/CFS after a stomach bug. I was 20. 2 years bed/floor bound then I managed a few years of sedentary living, working at a desk. I had a few other issues and the ME/CFS had lessened enough for me to sideline it. During that time I tried to lose weight by taking a variety of exercise classes, I walke and cycled everywhere

At 30 I was made redundant and went to University to do a Sport Science degree and Masters. I supported myself by teaching fitness classes. Lots of them, up to 20 a week. As long as I was slow and careful during the day and do nothing over the weekend I could teach 2 - 3 classes during the late afternoon, into the evening. I'd sleep like a log and drag myself to the library as soon as it opened. If I had a lie in I would sleep the whole day through.

By my mid 40s I had crashed again. I was nigh on narcolpetic. Was then diagnosed with pernicious/megalobalstic anaemia that was masking CFS (or vice versa). My day job at that time was working in a community charity, exercise, food, mental health, a job I loved. I didn't want to stop. But I had to. Could not have continued however hard I tried.

I took a course to start teaching in FE... seemed easier, I could sit down a lot. I went from being active, teaching exericse classes to being a desk bound frump, unable to move at more than a snail's pace. And I know I was lucky to have been able to work at all! All that exercise should have been far more harmful than it was.

But no amount of wishful thinking or brain training will make it possible for me to exercise like that again. Gentle dog walking is knackering - again I am lucky I can do that, and it took 10 years before I felt well enough to get a dog and be able to walk it often enough.

I cannot think myself into being able to exercise. I can only pace myself, do what I can when I can and sit down, do nothing when I need to. I know others have it far worse, others less. I have had better and worse periods of time. NOTHING I could think would have changed those periods of time!

Whatever you might find inetresting about the connection between ME and mental health you have GOT to stop touting mental issues as the cause.

As I sit here, in a good period, if I stop and think about my body, the signals it is sending me, I can feel the glands in my neck swelling.. I heed those, I kow they will put me into bed if I don't. My head is muzzy, my thinkig not quite as clear as it might be. I heed that, I could lose track of what I am doing, what I have planned for the day. I need to re-evaluate... what should I drop from my list? My feet are cold, so I have put on extra socks and turned the heating up, the cold will also put me to bed if I don't counter it.

There is more, and I have contingency plans for all of it. Unless you have ME / CFS or a similarly draining chronic condition yu cannot imagine how patronising and downright fucking antagonising "It's in your head' type comments are. It isn't in my head.... I get mental health swings because of the utter fucking hideousness of being so bloody tired all the time!

Anyway... off to walk the dog! SLOWLY!

Your BF is an arsehole and you can absolutely dump him for that alone! Wanker.

Colour magic, MS can be shown on an MRI scan and there is physical issues within the nervous system that can be seen to diagnose someone with MS. Someone with MS's nerves literally rot away depending what type they have. I never said ME was psychological either? I said it was an issue with the brain... as in things don't work properly in the brain... neurological. I never said in the mind!

What all experts agree on is that for many sufferers, ga program of gradual exercise helps

This is not true. It can make symptoms much worse.

@IsJustMe - just because someone threw a diagnosis of fibromyalgia to get rid of you doesn't mean it's a made up diagnosis which is used when they don't know what's wrong.
I had all tests in the world done, specialists looking at me, MRIs, CTs, blood tests so extensive it felt like they were taking half of my blood when they were taking the samples, 6 ampules full for all sorts of tests.
Then they gave me the diagnosis, because I had all the symptoms and a history of diseases which may serve as a precursor to a chronic disease.

Sadly it is still on the NHS website.

About 10 years ago I was in a group campaigning to get them to change it ..... we gave up due to the utter inertia we encountered. I beleive there is still a concerted effort about it. But it is where non or new sufferers go to get their information.

www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

You're expending a lot of your limited and precious energy on a boyfriend who isn't helping your situation. You're the only one who can decide how to proceed with that relationship, but do remember that you posted here upset about his attitude, clearly he isn't supporting you as he should.

If you haven't, do have a look at the Phoenix Rising CFS forums, there is a lot of good information to be had there. It's a specialist site for ME/CFS. You can link up with fellow sufferers and you may find new ideas to help you start your recovery. I wish you well.

phoenixrising.me/

Colour magic, MS can be shown on an MRI scan and there is physical issues within the nervous system that can be seen to diagnose someone with MS. Someone with MS's nerves literally rot away depending what type they have.

They don’t rot, no which implies decay. The immune system attacks the nerves causing demyelination (ie damage to the myelin sheath protecting the nerve fibres).

MS can be tested for with MRI scans now - but before the advent of MRI there was no test. And it can be confused with other similar conditions such as the neurological complications of Sjogrens.

I'm not going to lie, I did notice a significant improvement to her ability to cope and self manage with her condition once she started improving her social context/socialisation and even managed to start a relationship despite all the pain, fatigue and sleeping problems.

Can you be sure that it wasn’t the other way round - that her socialising didn’t improve as she learnt to cope and self manage better?

A great many have died, still hopeful.

But hey, it must be very reassuring to believe that other people's serious diseases can be 'cured' by psychology, or coaching from an enthusiastic amateur

If you read my post again I was pointing out to a poster who said her aunt cured herself from CFS, that some people claim to have cured themselves from cancer by non-conventional means, but that doesn’t mean it’s not a physical (indeed serious) disease.

@YappityYapYap

Colour magic, MS can be shown on an MRI scan and there is physical issues within the nervous system that can be seen to diagnose someone with MS. Someone with MS's nerves literally rot away depending what type they have

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I KNOW that. I mentioned in a previous post that the CAUSE of MS is not known. Fact. In response to a previous poster who had stated that ME is frequently disbelieved because the CAUSE is not known. I pointed out that there are many diseases for which the Cause is not known. But those diseases are not subjected to the disbelief and stigma which ME sufferers are subjected to.

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It takes on average 8 years for an MS diagnosis from the onset of symptoms, because the physical damage in the nervous system is NOT always readily identifiable from scans.

Another contributor to delays in diagnosis MS and other serious diseases is early psychologising by doctors. Once the doctors dismiss physical symptoms as 'psychosomatic', as caused by depression and anxiety, all subsequent symptoms and worsening of conditions tend to be interpreted as 'psychological' too. Women are especially subjected to erroneous psychologising of serious physical diseases.

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Women are especially subjected to erroneous psychologising of serious physical diseases.

Hell yeah. Women with heart disease are dismissed far more readily than men as ‘anxious’.

And there was a very sad case of a young woman scientist, whose DH was a GP, whose own GP dismissed her concern about significant weight loss and fatigue as ‘anxiety and depression’ and prescribed antidepressants, when it was in fact lymphoma, eventually diagnosed too late to cure.

She felt that the approach to her as a young woman was fundamental in not getting the treatment she needed early enough.

It really pisses me off when people think it’s all in the head. Honestly. Why would a gregarious sky diving teenager want to be living at home with parents cheering them on as they managed to walk to the front door? That was me.

But nobody seems to take any notice of food and diet either, it makes sense that you need vitamins to repair your health, why this gets overlooked even as common sense is bizarre.

But nobody seems to take any notice of food and diet either, it makes sense that you need vitamins to repair your health, why this gets overlooked even as common sense is bizarre

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Just about EVERYONE I know with ME take care about their diet, and many take supplements. No one wishes to feel more sick because of vitamin or mineral deficiency.

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Suggestions of "have you tried...", attention to diet, etc etc etc ad infinitum are relentless and repetitive.

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