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If you suffer from ME could you please tell me your symptoms?

(9 Posts)
justkeeponsmiling Fri 17-Jun-16 13:43:12

And did they all of a sudden appear or develop gradually for you?
My friend has been suffering from a range of strange health problems over the past few months. She is waiting for the last set of tests to come back (checking for auto immune diseases such as lupus) but so far everything has come back negative, except slightly raised White Cells
Her symptoms include:
Extreme fatigue (though very slightly better atm), too exhausted to do anything at all a lot of the time
Aches all over her body, so bad she is now taking dyhydrocodeine
Diarrhoea & Stomach pains
Mouth ulcers
Inflammation of the rib-cartilage (had this for a couple of months now, improved slightly)
Does this sound like the symptoms of ME to you? Especially with no other diagnosis, it definitely sounds like a possibility to me.

CFSKate Fri 17-Jun-16 13:53:11

ME can be gradual onset or sudden onset.

Go to page 13/14 of this PDF (labelled as pages 7/8) for list of symptoms.

Although it might seem like loads of symptoms are listed and it could be anything, there are distinctive patterns to ME. Sometimes I can spot people with ME.

The main thing is post-exertional malaise. If you go over your limits of exertion (whether physically, mentally, emotionally) there is payback. It may not come for two days, but it will come. Payback can be total exhaustion, it can be a worsening of symptoms. It can take a couple of days or a couple of months to recover to the level you were at before.

justkeeponsmiling Fri 17-Jun-16 13:58:56

Thanks very much kate I will have a look at that on my laptop

DawnMumsnet (MNHQ) Fri 17-Jun-16 15:02:56

Hi, we're moving this thread over to our General Health topic now, at the OP's request.

Best wishes to your friend, justkeeponsmiling flowers

JE678 Fri 17-Jun-16 15:06:16

I have had ME for 12 years. It came on after a virus and post-viral fatigue. My symptoms are extreme tiredness, weakness, dizziness, headaches, light and smell sensitivity, joint pain and reduced mobility. Mine came on suddenly but that's not always the case. ME is an exclusion diagnosis so it won't come until all other possibilities have been ruled out.

justkeeponsmiling Fri 17-Jun-16 18:07:27

Thank you Dawn smile
Thanks for your reply JE Sorry to hear about your health problems, what a cruel disease flowers
I know you are right and we will just have to wait and see. I just had such a shock seeing her today, she looked so awful (we live a bit of a distance apart and even though she had said she wasn't well I hadn't realised the extent of things until I saw her) and I think one of the worst things is not knowing at the moment. So even though I know it is not much use, googling symptoms and posting on here is the only thing I can do at the moment iyswim.

laura123456 Fri 17-Jun-16 20:25:30

Has she been tested for coeliac disease? Sounds like she has a lot of the symptoms connected with this condition. Other things to consider are food intolerances, they can cause all the symptoms you listed.

justkeeponsmiling Sat 18-Jun-16 09:52:48

Thank you Laura I can't believe I didn't think of that myself! In fact my step mother has coeliac disease and also many other food intolerances and allergies and had almost exactly the same symptoms before she was diagnosed! Only it was so long ago I had forgotten all about it. I will phone my friend this morning and have a chat with her about this. Thanks again flowers

CFSKate Mon 20-Jun-16 17:08:20

You mentioned tachycardia - if it is ME, there is a cardiologist who has posted a few videos about ME and heart problems. I think this is the first in the series.

don't know if you saw this thread, it was posted just before yours?

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