Hello, I want to get advice for going to the doctors about M.E/CFS

cherrytree78

Hello, I'm new here. I want to get advice for going to the doctors about M.E/CFS. I'm very nervous about it

malice88

Hey @cherrytree78, I can't provide advice, but hopefully a warm welcome 😊 

I'm new to Scope community myself and have been really impressed with the quality of the admin responses and dedication to factual advice.

My Mum (probably) has undiagnosed CFS, which developed after my youngest brother was born in 1990 after she and my foetal brother contracted pneumonia during pregnancy.

At the time, GPs were very judgmental and she avoided diagnoses I think because of fear.

She managed as best she could, and we all just accepted she had ME as it was called then based on her self assessment.

Because she wasn't diagnosed, she never got any treatment, support or medication, leading to some sad periods of self medication.

My Aunty then contracted CFS after her last child was born, or at least equivalent symptoms, and similarly struggled taking care of 3 kids and a home. 

It's so tough, and huge well done for going for diagnosis. 

I remember my mum struggling so much with full time work, commuting and coping with 3 kids, and being a wife while trying to hold it together.

She battled migraines, muscle weakness, soreness and cramping, exaustion verging on narcolepsy and it definitely impacted her mental wellbeing too.

She talked to me about how she wasn't always this way and she used to be an energetic mother (which i had no memory of). She felt guilty that we didn't experience the way she was before the condition affected her.

I wish you all the luck with your journey. Don't be afraid to advocate for yourself, and also to be open to different diagnoses than you were expecting. CFS has symptoms common to various conditions, so you might get a complete surprise!

Please do update on your progress, I'd love to hear more.

Rosie_Scope

Hi @cherrytree78, welcome to the online community!

Looks like @malice88 has already given a really lovely answer but thought I'd pop in to say hello. I had a diagnosis of M.E. aged 11, so I've been through a whole lifetime of GP visits both good and bad. I totally get the feeling of being nervous to talk about it, it's definitely not easy sometimes!

Would this be a new diagnosis for you? What makes you feel most nervous about talking to your GP?

Danlangridge88

Speak to your GP. I had to call multiple times complaining about pain, aches, weakness, fatigue and eventually they referred me to a 'persistent physical symptoms' department within the mental health team.
My advice is keep going on and at them til you get what you want. And if they don't refer you to a specialist, ask to speak to the manager of the department and explain you're not happy with the service/treatment you have (or in this case haven't) been offered!.
It did take a lot of consultations to finally get referred. It can be stressful but keep going! You're entitled to a say in your healthcare.
All the best 
Dan

Danlangridge88

Also they'll probably send you for blood tests for months and months repeating the same thing before they refer you. So request blood tests, especially iron, B12 and vitamin D. I also got referred to endocrinology before, to rule out endocrine diseases. Basically to diagnose CFS they rule out every other avenue first. So yeah it's a long process to get a diagnosis (still haven't got one after about 2 years of tests abd appointments)