Newbie - CFS

[Lynzhoppy1]

Hi everyone, I hope you are all as well as can be.

So my GP feels I have CFS on top of everything else I have going on!! He’s referred me to the CFS clinic, has anyone been before and what’s it like? What do they go?

Many thanks

Lyndsey

[Ansteynomad]

Can I ask what else you have going on? Could it be that your symptoms are attributable to something else?

[Lynzhoppy1 in reply to Ansteynomad]

Hi,

I’ve got arthritis, sacroilitis, osteitis condensans, thyroid issues, anxiety and depression. My sleeping issues have gradually gotten worse over the last few years and it can now be days between me getting any kind of decent sleep. I’ve had loads of blood tests done, long in-depth chats with my GP and after the last appointment he said he feels I’ve got CFS

[Ansteynomad in reply to Lynzhoppy1]

After my experience of being told I had CFS when I did not, I’d want to be sure my thyroid was optimally treated before I went down that route. Getting my thyroid sorted fixed years of awful pain that was supposedly arthritis as well as my sleep problems. Have you posted on the ThyroidUK forum on here? It might be worth a go.

[Lynzhoppy1 in reply to Ansteynomad]

I’ve had recent bloods done and my thyroid levels was right in the middle of the range so I’m confident that’s not the issue

[cfs_warrior4]

Never been to a CFS Clinic. I live in the USA, and considering what state I live in, that is ages away. You sound a lot like me though. CFS/ME and scoliosis. And depression. Also B12 anemia.

[Starry]

Hi,

I'm waiting on a referral to one too. I'm also relatively new. Mine seems to have onset after endometriosis, major excision surgery followed by a week in hospital with viral meningitis.

I'm vitamin D and zinc deficient, have anxiety and at times depression though my thyroid and vit b12 checked out ok

[Lynzhoppy1 in reply to Starry]

My referral was sent a few weeks ago now but I’ve not heard anything back yet.. I think mine has started since I’ve been on all my medication. Strange how things affect the body eh

[Starry in reply to Lynzhoppy1]

Yes very much so. I'm intolerant to most meds, and most foods these days.

I was warned there's a long wait list in my area.

[Karenlynne]

I went to the CFS clinic in Leeds where they ask lots of questions mainly over a period of a few weeks and by your response will either way yes.no.or maybe!! If already taking medication that can cause any kind of fatigue it will be a maybe or even a probably!! And that's it. The only real way of getting a diagnosis is to have the mitochondria function test which will show you the state of your mitochondria in comparison to that of the norm. So, don't worry but the appointment can last up to an hour, though you can lie down if necessary,so give yourself plenty of time. Waiting lists are very long by the way. Good luck. Update when you've been please. Karen lynne

[Lynzhoppy1 in reply to Karenlynne]

Hi KarenLynne,

Thank you for the response. It’s helpful to know what to expect, so thank you. I will enquiry about the mitochondria test 😊 I will update after my appointment xx