AMA
I have Chronic Fatigue Syndrome, AMA!
pannikin · 17/12/2020 13:40
As the title says, I have CFS/ME. Ask me anything!
cremuel · 17/12/2020 13:55
How did it start? Did you have a period of feeling pretty tired that just got worse, or were you suddenly completely incapacitated?
pannikin · 17/12/2020 14:17
@cremuel
It came on gradually, over the course of a few years. Over the last 3 years it has got significantly worse and I can only leave the house once or twice a week.
Neotraditional · 17/12/2020 14:19
@pannikin
How much are you able to do in a typical day, if there is one? I’m sorry you are suffering with this
NewCatMummy · 17/12/2020 14:23
Do you think there is a yet-to-be-discovered biological reason for your illness?
AuntieSocia1 · 17/12/2020 14:32
Can I ask your top tips for managing it? I have an autoimmune condition and have also recently been diagnosed with fibromyalgia but by far the worst thing is the fatigue. I seem to be having a particularly bad flare and sometimes even the thought of doing certain things will mean I have to take hours long naps. I've tried fighting the need to sleep but then I'm zombie like. Reading up on pacing etc but feeling a bit lost with it all and the future feels a bit bleak
LifeBeginsNow · 17/12/2020 14:36
I've just been diagnosed with this. Do you find yourself out of breath a lot (this could be because of another problem I have but not sure)?
SandysMam · 17/12/2020 15:05
Sorry pressed enter too soon! And if so, has it totally wiped you out?
pannikin · 17/12/2020 16:06
@Neotypical
'How much are you able to do in a typical day, if there is one? I’m sorry you are suffering with this'
I have primary aged kids so I have to do the school run. Luckily DH works from home in a flexible position and if I'm really unable to take them/pick them up, he goes or my mum does (she's down the road). How much I manage to do depends on how I'm feeling. I also have a couple of other conditions that cause severe chronic pain and when I'm having a CFS flare up I can be asleep for anything from 12-20 hours a day. When I'm feeling ok, I can manage to put a wash on, Hoover the living room, unload the dishwasher but I have to sit down between tasks or sit on a chair to sort laundry, for example.
pannikin · 17/12/2020 16:08
@NewCatMummy
I'm really not sure. I know there's some research going on (I believe in the US) and they are trying to find a biological marker for it. I think for many people it develops after an infections, such as people currently experiencing 'long Covid'. It would be nice to know the exact cause as it can be an incredibly frustrating illness to deal with due to how vague everything is.
pannikin · 17/12/2020 16:10
@AuntieSocia1
I'm sorry to hear about your recent diagnosis and that you're not too well.
The fatigue can be really, really disabling. All I can say is listen to your body and don't push it if you can help it. If you get post-exertion malaise, you will soon remember to do this! It can be difficult to deal with this illness mentally, too. I don't have any advice for that side of things I'm afraid, as I'm also dealing with the difficulties of declining mental health surrounding chronic illness
NeurologicallySpeaking · 17/12/2020 16:14
Nothing to ask but I'm so sorry you have this. I knew a student with CFS and her difficulties were unbelievable. I hope research brings greater enlightenment on the condition soon.
Hugbear · 17/12/2020 20:49
I'm sorry you are going through this OP. Can I ask how old you were when you started experiencing symptoms and do you feel understood, in terms of your pain, exhausting etc ? My friend suffers from severe fibromyalgia but unfortunately her own family underestimate her pain and cognitive problems. Even colleagues accuse her of sciving off work when she has a flare up. Breaks my heart.
DianaT1969 · 17/12/2020 21:04
Do you take any supplements? Any specifial diet, or way of eating?
SD1978 · 17/12/2020 21:07
Were you ever medicated for depression as a teenager? I've noticed there seems to be some correlation, with depression and medication in teenagers who go onto develop CFS although this is purely anecdotal and not scientifically researched by me.
80sColourfulChristmas · 17/12/2020 21:08
I also have CFS/ME, so I'm also happy to answer any questions the OP is unable to/misses.
Had it 23 years since I was a teen
80sColourfulChristmas · 17/12/2020 21:10
@SD1978
I was! At 17. Although my symptoms began at 13
DianaT1969 · 17/12/2020 21:29
Anecdotally, on my FB groups for optimum health (intermittent fasting etc) there are people trying to reduce inflammation (and maybe lose weight too). That is to say people with this, fibro, Hashimotos and other inflammatory conditions are trying to to improve their gut health. Some mention depression and anxiety too.
Italiangreyhound · 17/12/2020 23:05
pannikin I am so sorry to hear this. My dd is 16 and it looks like may be suffering from chronic fatigue and chronic pain. Has depression, anxiety and also hypermobility.
Any advice at all would be most welcome.
80sColourfulChristmas I am so sorry to hear about your situation too.
Are there any experimental treatments, research I should be looking into etc.
sweetkitty · 17/12/2020 23:16
A close friend and her teenage DC suffer from this (I have fibromyalgia so have a little bit of an understanding of what you are going through).
Have you read about the effect of vitamin B12 on CFS? Supplements give false readings in blood tests so GPs think your B12 is fine but your body cannot use the B12. You have to be off all supplements for 4 months to give accurate results. Then if you are found to be deficient GPs will only give 3 monthly injections (tablets are useless) which have been proven not to be enough. A lot of people are now buying vitamin B12 from abroad and self injecting (it’s legal to buy it in Europe, it’s a safe vitamin).
They are finding that a lot of their CFS/ME symptoms are disappearing as they have been incorrectly diagnosed. I’m not saying that’s what it is for everyone or it’s a magical cure but it’s worth looking into and having blood tests done. I do think we don’t realise the importance of these vitamins on our diets and lack of.
I am shocked and saddened by the lack of support for people with your condition and the assumption that’s it’s all in your head or take some anti depressants view that some HCPs seem to have. I really really hope they find a cause and therefore a cure soon.
Italiangreyhound · 18/12/2020 00:32
The specialist we spoke to mentioned supplements, I am glad I saw your post sweetkitty as I will look into this properly before just buying some pills. It was a phone consultation and no prescription. We have a face to face consultation soon.
Thanks for mentioning this.
Jackabobbo · 18/12/2020 00:41
I have a similar condition - it's genetic but chronic pain and fatigue are the main symptoms.
One thing I've noticed is it seems very linked to my mental health. Actually seeing a counsellor, a really good one, for talking therapy, helped me a lot I feel.
It's very hard to say as symptoms come and go, and I can be fine for ages and then have a flare up, but I do think trying to keep mentally healthy helps. I have to be careful about what I eat as I have a lot of dietary restrictions due to my condition, but within those restrictions I am doing my best to eat a healthy diet, and to maintain a sensible weight (my problem is usually being underweight rather than overweight). And though there are days I can't manage it, when I can I will try to always go for a walk each day. Even if it's a very, very short walk - I'm talking 2 minutes short. Small things like this help I think. Trying to keep a good sleep routine too - though this is something I particularly struggle with!
It's very hard to live with this type of illness. Partly because the symptoms themselves are hard to manage at times, and partly because it is so "invisible" with little real awareness so it's not uncommon for people to think you're making it up, or exaggerating.
stella1know · 18/12/2020 00:47
Is there any link with Vitamin D, eg does high strength 20,000 units help, or St Johns Wort? Just wondering if there is any link at all.
I would like to read up on inflammation.
cactusisblooming · 18/12/2020 10:57
Is it an actual medical diagnosis? If so did you find it difficult to get the diagnosis? How long did it take?
I've come across so many women on social media who have fibromyalfia/CFS (by chance) and some of them seem much more active than me, it makes me wonder if they have self diagnosed or were actually diagnosed by a HCP.
Are there medical consultants specifically for CFS?
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