Chronic fatigue syndrom

[Frob1995]

Hello.. not sure if anyone will see this but I’ve not been very well lately and my doctor thinks i might have CFS, I’ve got two young children and every day life is a big struggle gone I’m just exhausted all the time even doing the basics wear me out like cleaning cooking etc.. I’ve actually never heard of this before and don’t know much about it only what I’ve been reading up on. I’m just hoping someone in the same boat as me see’s this. Because atm I’m feeling like I’m failing parent hood because of how exhausted i always am when i try to explain to people that I’m tired they tell me to go to bed and sleep but it’s not just being tired and something a nap can solve. My memory isn’t great either i feel like my head is like one big cotton wool because I can’t function properly and my children feel so much heavier than usual, I’m also waiting for a blood test to rule celiac disease out next week and also waiting on a ultra sound because i found a lump half way down my throat! Not sure why I’m typing this but probably just hoping someone replies and understands.
TIA x

I've had CFS for 20 years....

The main advise I can give u is to not try and "push through" it. That's not always easy. But it's not something you can "beat". It's something that has to be managed

Have you had your vitamin D tested? I felt like this last year. It was awful. I could barely get out of bed some days or walk up the stairs. It turns out I had a vitamin D deficiency. I was completely skeptical that’s what it could have been. I didn’t think anything short of cancer could have made me feel that ill.

About a month after starting on supplements, I felt normal again. I will have to take extra vitamin D for life but I feel great now.

I have an immune system problem - so far unnamed. Sjogrens was a possibility but not that. Maybe CFS is affecting more people.

Are they also testing for thyroid problems?

Have you heard of the Spoons theory?
butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I had CFS from 19 - 30. I'm now 44 and with the help of the National ME Centre I am now married, work full time and have a 4 year old son. I still have to go careful with what I do or I end up with a warning sign - vertigo. It has been a long journey but so much better than being housebound.

@mindutopia - I don’t think i have i had some
Blood work last week and everything came back normal but have to have a celiac test next week to rule that out. I’m so exhausted i just can’t cope with it anymore!

@Laterthanyouthink
i had my bloods done last week and thyroid and everything was fine hence why my doctor said CFS.

@Cutesbabasmummy
Im only 24 and have a 2 year old and 9 months old and the struggle is real i struggle to do the things we use to do as a family even a walk to the park wears me out and it’s so horrible because i feel like I can’t be the mum i use to be. I just want to know whats wrong with me so i can try to find a way to cope with it because at the moment I’m not coping very well and rely on family members to help look after my children but that’s only when they aren’t working.

Thank you everyone for your reply’s x

@BlankTimes thank you so much for this it actually describes my life at the moment and no one seems to understand me when i say I’m tired its With have a nap or you’ve got kids and all that sort of stuff i get off people but here i am trying to explain to them no it’s none of that I’m physically and mentally drained no matter how much i sleep it doesn’t help. I’ve lost weight i look terrible i keep getting random bruises all over my legs my eyes looks awful and drained. I’ve started a new job working nights and already called in twice sick because I can’t even bring my self to go work a 12 hour shift i just feel like I’m crumbling. I don’t drive anywhere anymore because I’m so tired I don’t want to put my children at risk it’s just awful i have never felt the way I’ve felt the last couple of months

Have you seen a rheumatologist? If not ask your GP for a referral as soon as you can.

DD is diagnosed with CFS and a lot of other things, but has never experienced bruising as a symptom. That needs to be investigated.

She felt a bit better in herself after taking a one a day multivitamin and mineral supplement, Aldi's own brand. I'd told her it may take a while to see any improvement, she noticed a big difference after 6 weeks so continues to take them.

You do need to push for more medical investigation, usually rheumatology is the way. I know how hard it is to self-advocate when you're so wiped out.

Could the GP sign you off sick? DD could only manage a bed-sofa-bathroom existence for a long time. Has never been able to work or even go out every day for a short time.

Hi
Yes I was diagnosed with it just before I found out I was pregnant with my first

I have a 9 year old and a 5 year old
To say I’ve struggled through the passed 9 years is an understatement

I was then diagnosed with fibromyalgia 6 years ago
I never feel rested even after a nights sleep
I am better though than I was even 5 years ago
I have to take it easy
Really easy
I still manage
Please get your vitamin b12 tested
I was very deficient
It can cause cfs
I had Epstein Barr virus (from glandular fever( in my blood also (I had to see a fatigue specialist diagnostician to get this diagnosed)
I believe mine came from a mixture of these two things
I

I’m so sorry for you as life is just so so hard with this condition

My kids are pretty good and are learning to make their own beds, help with cooking dinner, making breakfast
I have just started working part time
I find walking outdoors helps as the fresh air just helps
Gentle yoga is very good for muscle pain and getting extra oxygen into your body

I reiterate please get your b vitamins tested
They don’t do it routinely even when people complain of exhaustion
I needed b12 injections for 8 months and it made me feel a lot better
I couldn’t walk at that stage and had to take 8 months off work xxx

It isn't necessarily CFS just something which is causing you the symptom of chronic fatigue. I would try and rule everything else you can out, celiacs is a good start, as is the lump in your throat, but also as others have suggested, things like b12, other vitamins, thyroid, etc. Also auto immune conditions and things like that. The treatments for these can be much more effective. CFS itself is treated basically through symptom management, so it is more about acceptance, simplifying your life and pacing, whereas lots of other conditions can cause the symptom and have a curative treatment which could mean not having the fatigue anymore. So please get them to investigate all other causes first.

@BlankTimes the rheumatologist referel will get done once I’ve had the bloods next week and when I’ve had my ultra sound on my throat. I think getting asked to be put off sick will be my next query with them when they open tomorrow morning because I’m due to go to work tonight and currently in bed absolutely wiped out again! I will definitely go get my self some vitamins anythings worth a try!

@Constantbronchitislaryngitis
My b12 was teated last week i asked my gp when i got my results and the opticians had asked me to ask them because i had to phone the opticians on thursday for a emergency app because my eye sight had gone in my right eye and it made everything look like it was under water and the first thing the receptionist asked whas if i had my b12 tested so i did ask my gp and they said yes. If my children were older it would be ok because they could probably help more but they are still only very little and need looking after. I’ve had a horrible sore throat for weeks and all the symptoms I’d spoke to my gp about was describing CFS but obviously she needs to test celiac first but she was pretty sure that what it aas just a specialist would have to confirm it 100%. I’m struggling to walk i get breathless i feel like my legs are like jelly and that I’m constantly some sort of drunk I’m forgetful some times i can barley talk properly and just mumble it’s just so odd that I don’t know what’s happening to my own body.

Are you happy in your life, and do you feel fulfilled, satisfied?
I spoke to someone who assisted people with ME. I was advised there was a problem with not prioritising yourself. At the time that I was ill I had a failing elderly DM and the constant stress of not finding enough time to do what I felt I should do, plus, I realised later, worrying what people, including DM, would think as I wasn't doing as much as people expected of me, was giving me severe stress, the stress was making me ill with many varied symptoms including exhaustion and weakness.

@Stooshie8 with all respect CFS is a works away from severe stress x

With all respect Cute I suffered severe exhaustion and weakness which was more than just stress. Wouldn't wish it on anyone. But the advice I received helped me.

With a cotton wool head, bruising, knackered, funny eyes, jelly legs and trouble speaking I'd be asking to get tested for Multiple Scolrisis OP.

Do you feel worse after exertion? The unique symptom for CFS is an exacerbation of symptoms after activity. This is either as a result of your body's inability to produce sufficient energy at a cellular level or from orthostatic intolerance. You haven't mentioned dizziness, so I assume it's the former.

As PP have said, pushing through doesn't solve things. If your metabolic energy systems aren't making enough energy, you'll just be going "into the red" and be making yourself worse. This is why resting and pacing is key. Pacing is staying within your energy envelope and trying to stay in "credit". It's easier said than done, especially with little DC, which is why it's important to accept what is wrong and adapt to it.

But I really believe that if CFS is managed well in its early stages, people have a high chance of making a full recovery. Especially for it's post viral, which it sounds like in your case. Feel free to PM if you have questions. DD(18) has had it for 4 years and I'm well-read on the subject.

Frob
Take sone time off work if you can
Yes my kids are abit older but I’ve been through it all for years and it’s almost impossible
I remember getting out of bed in the morning and just crying with utter exhaustion
People who say they’re tired don’t understand this is unquantifiably worse
I still generally drag my way through life but I’m heaps better than I was
It’s awful

Have you asked a doctor about possible sleep apnea?
I have severe sleep apnea and was exhausted every day until I got a cpap

@BonnesVacances i have Dm you.

@Constantbronchitislaryngitis

I’ve only just started last week and only done one night shift because I’ve called in sick already. I was on maternity leave before i started so i feel so awful calling in sick but I physically can’t do it.
I’m like that now i cry for nothing because I’m so tired i dread going to bed at night knowing i have to get up the next day as exhausted as i was going to bed. My partner works long hours too so he’s out the house 14-15 hours a day he leaves before the kids gets up and not back until they’ve gone to bed or ready to go to bed. So I’m trying to juggle everything on my own. I even try to get both to nap the same time every day so i can get some time to rest but some days that’s impossible. My oldest goes to pre school for 2 hours on a tuesday and Friday but by the time i get home have breakfast and stuff its time to go get him so not much of a break there either. Even taking him and fetching him from pre school is enough to make me exhausted.

Poor you
I remember getting them in and out of car seats and in and out of buggies used to exhaust me
I’ve got bad IBS symptoms too- like right now my joints are all so painful and I don’t know why
Do you have any family who can help you
?

@Constantbronchitislaryngitis -
My bowls aren’t great i either go too much or I can’t go at all then bleed! Sorry TMI

I have but everyone works so it’s hard and my mums got liver cancer so she’s very limited to what she can do she try’s her best and it breaks her heart seeing me like this because she can’t do much to help due to her own illness. My DH works nearly 2 hours away from home so the next step for us to do is to try and find him something closer to home so i can gain a few hours of his time everyday to help with breakfast time and bed time. It’s just gone 1am and i was meant to do a 8pm-8am shift tonight buts I’ve just got home and about to go to bed because i couldn’t carry on