New to this

dear Andrea

i totally understand your frustation and pleasedo not feel bad for crying in front of the doctor, that shows the reality of the situation to her, doctors whether they accept it or not are here to help us get better, not to undermine us and make us question ourselves, when my doctor said 'we doctors don't treat cfs', i thought - lady you are in the wrong job, i needed help and nderstanding not a bald statement.

keep talking with the doctors and get your point across, you have the right to be heard and to a decent  standard of healthcare.

take care

betty

First of all I think it's quite understandable for you to worry when you have a lot of symptoms going on at once an I also think you would then compare the energy levels with that of your mum before she passed I don't think your dr should have spoken to you in this way everyone reacts differently when they are worried it's a fear of the unknown isn't it, but try and be calm Andrea and hopefully you will get seen soon at the dfs clinic I have just had a negetive result ct scan regarding my post viral fatigue diagnosis I'm still dizzy at times breathless all the time fatigued round the clock but I'm learning to try and pace myself and also thinking positive

I received absolutely no help from the medical community apart from my GP who kept telling me to pace myself an meds to help battle the depression it brings. At the end of the day it was down to me sorting myself out.

probably not what you want to hear but at least I am feeling so much better now 

Andrea, I think that it's time that you changed your doctor, suffering from this condition is bad enough, even if you have good support but it gets a lot more difficult when you're having to deal with doctors who are ill-informed.

If you do change your doctor, try toget their views on ME/CFS treatment before you go under their care and choose one who has some real knowledge of the condition.

Don't despair, it's been difficult for us all in the early stages but once you're under the care of someone who knows what ME/CFS is all about, you will find things a little easier and best of luck, you'll get there... :-)

As Georgia says, ther are more sympathetic doctors out there, though I think they can get frustrated as there is not very much they can offer us. My lovely GP did refer me to a neurologist (suspected myasthenia something or other, it wasn't that); a short mindfulness course (very helpful, less stress means less exhaustion); and the local CFS/ME service, which confirmed her diagnosis and are offering me a series of appointments. Not sure how helpful they will be yet, but it seems to be geared up to gently encouraging me to do some activity every day and to advise me on nutrition.

So please don't give up hope, there is help out there, even if your GP treated you abysmally. And there are loads of knowledgeable and lovely people on this forum to help you too.

Hi Andrea,

I know exactly how you feel - and I'm sure everyone else here does as well.  I went through the same.  It's a process to find a doctor that takes it seriously but completely worth it when you do.  It;s not easy sadly, and it took me 10 months to get a CFS specialist - and even then my GP wouldn't say I had it!!

The sad thing is there is no test for it when it comes to GP's because it's beyond the realms of what they do and know.

I decided to go to a nutritonist with experience with ME and it was the most amazing thing.  She understood it, and she said "we will make this right".  It was all I needed.

Perhaps try and find one - they understand it all much better.

The other thing I have learnt recently is that yoga and breathing exercises might be saving my life!

There are many options out there for you to feel cared for and for you to feel hopeful - don't worry!

x

Oh Andrea its awful isn't it just trying to explain to someone how you feel.!! I've been going through the same thing for the past four years. Its only that I seen a different gp two weeks ago that gap made all the difference and now finally they are taking notice of how I feel and investigating it. Its great that they have referred you to the cft clinic at least they will take a good look at you and listen to you good luck x

Andrea,

I too started crying the first time I went to the doctor and the nurse responded with acting like I was stupid coming to the doctor for such a thing.  She told me, "Everyone gets tired". I was 47 at the time and I knew that I had never felt like this before.  I was far from just being tired.  The doctor at that office sent me on to a different type of doc (this is in the USA). And I never went back to that doc about my CFS and Fibro even though our family had always loved that doc.  Two years later, when I was quite a bit  better but still struggling I went back to that same doctors office to do something I had always promised myself I was going to do.  I had promised myself that I would tell the main doc there, that if they ever had another patient come in who was mostly bedridden and presented with my other symptoms to please give them my phone number so that I could help them.  That is when he told me that they had something like 15 patients come in every month who were just like me; but they just did not know what to do to help them.  Of course there were by then a couple of prescriptions that could be prescribed, but nothing to cure the patients.  He told me what a mystery this condition was to docs.  I actually was shocked.  I had no idea that so many people were struggling the same sort of way.  One thing is for sure, you are not alone.  Since then, I have found some answers.  And I really do beleive that the medical establishment is coming up with more.  Best wishes to you!