Does this sound like CFS? I really need help, I’m struggling.

[Amber83]

Hi everyone,

I’ve suffered with fatigue for as long as I can remember. It’s a kind of fatigue that makes my whole body feel exhausted, I feel weak all the time like I’m constantly coming down with something. It doesn’t matter how much I sleep or don’t sleep it doesn’t get better. I can feel it in my head if that makes any sense, like my eyes feel like I’ve been awake forever. I feel lightheaded most of the time and more recently I’ve started to get a weak, achy feeling in my arms and legs. This seems to get worse after doing something like peeling potatoes or when I get in the bath, they feel so weak that my hands sometimes shake a little. Bit by bit I’m unable to do things, I can’t exercise and doing day to day things is a huge struggle that it’s made me feel really anxious and depressed which is obviously making me feel worse. I want a life, where I can take my daughter out and enjoy it instead of constantly dragging myself around.

I think it started just before I was diagnosed with endometriosis (which can cause fatigue) but I’ve recently come off a medication that effectively switches the endometriosis off and I still felt severe fatigue so I’m thinking it’s not the endometriosis causing it.

The fatigue got even worse after having my little girl in 2017. Soon after that my mum got diagnosed with lung cancer and I went onto antidepressants for two years. I still felt extreme fatigue whilst on them so my thoughts are that it’s not anxiety causing the fatigue either.

I’ve had all the regular blood tests done and they are okay and within range. Recently I had some autoimmune bloods done and apart from one called Ana, they have all come back okay.

I do have stresses like grief after losing my mum in 2020 and dealing with the pain and other issues endometriosis causes but I really don’t feel these are the reasons for me feeling so so poorly.

Does anyone have any idea of what this could be caused by? I’m at a complete loss with all of it and I feel it’s making my mental health really bad x

[MollyStark]

Hi Amber83, I struggle with the very same type of fatigue. I've had it many years and had a diagnosis of fibromyalgia a few years ago, although I am not sure the fatigue is connected. Despite another health issue, the fatigue is by far the worst thing. Anxiety and stress certainly has a large part to play in fatigue. Keep looking for answers.

[timbuktoo123]

Just a suggestion but make sure you rule out b12 deficiency as that has a lot of the same symptoms as CFS. The doctors don't always know about b12. They can say your level is good and you're only just above the bottom of the range. My b12 level has been in range but I still have Pernicious Anaemia which means I can't absorb b12. The b12 test measures active and inactive b12 so it doesn't show the true picture. There's a really good Facebook group called Pernicious Anaemia/B12 deficiency - Support Group. They're very knowledgeable and helpful. 😀

[Amber83 in reply to timbuktoo123]

Thank you for your reply. I paid through medichecks to have my Active b12 checked. What do you think of the result? I have started methylcobalamin b12 1000ug tablets this week as thought it’s worth a go.

B12

[timbuktoo123 in reply to Amber83]

Your active b12 is in range but it won't necessarily show the whole picture and can be higher if you've had any b12 in the last 4 months e.g. multivitamin, energy drinks etc. Your folate level is too low. For your body to use b12 it needs to have a good folate level in the upper quarter of the range. Reading through your symptoms I think it would be worth getting some further test from your doctor like homocysteine, MMA, Intrinsic Factor to find if you have an absorption problem. If you do then supplements won't help they'll just raise your blood test level and not get to the cells. I would definitely suggest joining the b12 group I listed above. They're very knowledgeable and helpful. Your ANA test if it was high can relate to Lupus so worth checking out too.

[Amber83 in reply to timbuktoo123]

Might sound silly but my first thought is to start folate supplements as I want to see if it helps but I have an GP appointment on the 21st March. Is it worth not taking anything until this appointment so my bloods if they do them will be at my normal base, or will these tests you suggest still show if there’s a problem despite me taking supplements? Sorry for all the questions I’m just clinging to anything that might be the reason I feel how I do.

I’ve had various other autoimmune tests which I think test for lupus and they have come back okay x

[timbuktoo123 in reply to Amber83]

I don't mind about the questions but join the Pernicious Anaemia/B12 deficiency - Support Group on Facebook as they know more than me and will answer all your questions. They've helped me a lot. I wouldn't start taking anything until after all the tests are done. You won't know until you've had the tests done if you have an absorption problem; some of the test need 2 weeks off b12, some 4months. You'll want to see your normal level of folate before you start supplementing. This is the group: facebook.com/groups/PAB12DS...

[Amber83]

Thanks again, I have just joined the group, well I’ve asked to join lol x

[timbuktoo123 in reply to Amber83]

Yay great. It's good to have access to their knowledge and not just the doctors as theirs is extremely flawed to do with vitamins.