ME/cfs diagnosis problems

Nova_Skye

Hi, I don't really know where to begin with all of this so I'll start by introducing myself I suppose. 

My name is Skye and I am a young woman in my 20s. I have struggled with mental health issues for a long time now, over 1/3 of my life, and have a few diagnosis - joint anxiety and depressive disorder, anorexia, and autistic spectrum disorder. Currently I am not struggling with my anorexia or depression. (frankly I'm too exhausted all the time to really care aha) 

Over the last maybe 8 months I have also been struggling with my physical health - extreme fatigue, nausea, memory issues, joint, bone, and muscle pain, blurred vision when my fatigue gets bad, difficulty swallowing, difficulty staying focused etc. It seems to be steadily getting worse, and a good day means I'm proud of myself for doing the dishes or walking the dog. I can't work or pursue any hobbies that I used to. I'm not depressed though, which I think is important to note. I have a lot of good in my life at the moment, too. 

Anyways, over the last 4 months or so I've had doctors visits, and a lot of them (in January alone I had 8 appointments, I'm exhausted from them all too). Tests after tests, looking into possible causes. We've finally got to the point where we're pursuing an ME/cfs diagnosis, I have a blood test in April to do all the tests the clinic needs and an appointment a week after to fill out the form and get everything sent off with my doctor.

Me being me, my little autistic self who likes to plan things and prepare as best I can, thought it would be a great idea to look at the form from the ME clinic to get an idea of the kinds of questions I'd need to answer. It was a bad idea.

As I was going down the form I noticed this statement under a box asking whether there was clinical evidence of psychiatric conditions (and "eating disorder" was listed):

"long term mental health conditions may mirror many aspects of cfs and therefore preclude cfs diagnosis"

And now I just want to cry (and have been all night). My doctors appointment isn't for another month so I can't talk to her about it until then. I can't tell whether maybe she just didn't know, or maybe they take it on a case by case basis, or whether it only includes conditions you're currently struggling with... But I'm very, very anxious. I feel like the last 4 months have all been for nothing. I'm exhausted. I feel like I'm going to go through another few months of this to just be let down because of my mental health - when it's so clear that they aren't related in this instance at all. I get that diagnosis isn't everything, but I just feel so invalidated, which I already struggle with so badly. I feel like they're going to completely bin off what I go through every day, because of a psychiatric condition im not even struggling with at present. 

I guess my question is, has anyone been diagnosed with ME/cfs with an eating disorder diagnosis? Or can anyone offer any support or advise?

I'm hoping they take it all on a case by case basis... But I know they probably won't. I've even gone as far as looking into the NICE guidelines, and it says nothing definitive there other than in sources they looked into when making the guidelines.

I'll stop waffling on now, but any help at all would be so much appreciated. I'm feeling very alone and very isolated right now. 

Alex_Alumni

Hello there @Nova_Skye and welcome to the community, it can be really difficult to share your worries, so thanks for reaching out.

I can certainly appreciate wanting to feel prepared and ready for what's to come, and I was sorry to read that the form has made you feel so anxious. If you ever feel like you're struggling Mind has some helpful resources.

I know your doctors appointment isn't for another month, but is it possible to request a quick telephone appointment, or to email through your concerns to your surgery, just something to help put your mind at rest?

It can be very easy when we're feeling a little anxious about something to jump to the worse conclusions, and assume they are going to happen, we do it all the time. Remember that nothing is confirmed yet, and you can still take steps to prepare.

You've still got those tests to take as well, and they might help confirm the diagnosis.

If you can, I would encourage you to speak with your GP about how you're feeling now, and run through the details of the form with them. 

I can't advise around the specifics of ME/cfs diagnosis as I'm not a medical professional, but hopefully any members who live with ME/cfs can share their thoughts.

Let us know how you get on with everything, and if anything isn't clear, please say, especially if you feel we can help further.

Alex

Alex_Alumni

Hello @Nova_Skye how have you been getting on? Is your blood test still scheduled for April?