Diagnosed with ME

pixiebex86 · 2022-09-27T21:56:01+00:00

Has anyone else been diagnosed with ME and can share their main symptoms, anything that helps ease any symptoms. Certain triggers. Support they've received. How your workplace managed your health problems

GobbolinoTheWitchesCat · 28/09/2022 03:57

Following

Willdoitlater · 28/09/2022 08:03

The main and defining symptom of ME is post-exertional malaise, which means onset or worsening of symptoms such as fatigue, pain and brain fog after minimal exertion. These post-exertional symptoms are out of all proportion to the activity which precipitates them, in terms of severity and duration. So, a pwME can feel only mild/moderate symptoms at rest, but then for example climbing a flight of stairs puts them in bed, exhausted and in agony for three days. There is no treatment, only management by pacing to avoid these post-exertional crashes. If a pwME carries on provoking such crashes they will likely get worse over time.

Learn to pace by reading 'Fighting Fatigue' by S Pemberton and C Berry or 'Classic Pacing for a Better Life with ME' by Ingebjorg Midsem Dahl.

A good occupational therapist with expertise in ME will be able to help you and you employer put a plan in place, but such people are very rare. Avoid Graded Activity or CBT and anyone who suggests them. See the NICE guideline.

Original poster

pixiebex86 · 28/09/2022 08:16

Willdoitlater · 28/09/2022 08:03

The main and defining symptom of ME is post-exertional malaise, which means onset or worsening of symptoms such as fatigue, pain and brain fog after minimal exertion. These post-exertional symptoms are out of all proportion to the activity which precipitates them, in terms of severity and duration. So, a pwME can feel only mild/moderate symptoms at rest, but then for example climbing a flight of stairs puts them in bed, exhausted and in agony for three days. There is no treatment, only management by pacing to avoid these post-exertional crashes. If a pwME carries on provoking such crashes they will likely get worse over time.

Learn to pace by reading 'Fighting Fatigue' by S Pemberton and C Berry or 'Classic Pacing for a Better Life with ME' by Ingebjorg Midsem Dahl.

A good occupational therapist with expertise in ME will be able to help you and you employer put a plan in place, but such people are very rare. Avoid Graded Activity or CBT and anyone who suggests them. See the NICE guideline.

Yes that's it. And I'm certainly getting worse on my bad days.
Hopefully I'll meet a few people who can share their experiences

OP posts:

Willdoitlater · 28/09/2022 09:08

I am so sorry that you have ME. It's vile. I was pretty blunt in my first post because most people who think they have ME are just feeling tired, and true ME is much more (and worse) than that. And even people who do have ME, tend (understandably) to say they can't pace, due to job, kids etc. Whilst understandable, this attitude is akin to a person with cancer saying they don't have time for chemo. It's really is that serious and it's not a choice. The ME Association is a good source of information, there is also Action for ME, who I think may have/be developing some specific info ('toolkit') for employers. The Open Medicine Foundation in USA (omf.ngo) have 'Post-exertional malaise avoidance toolkit' somewhere on their website, which is very helpful.

Original poster

pixiebex86 · 28/09/2022 16:59

Willdoitlater · 28/09/2022 09:08

I am so sorry that you have ME. It's vile. I was pretty blunt in my first post because most people who think they have ME are just feeling tired, and true ME is much more (and worse) than that. And even people who do have ME, tend (understandably) to say they can't pace, due to job, kids etc. Whilst understandable, this attitude is akin to a person with cancer saying they don't have time for chemo. It's really is that serious and it's not a choice. The ME Association is a good source of information, there is also Action for ME, who I think may have/be developing some specific info ('toolkit') for employers. The Open Medicine Foundation in USA (omf.ngo) have 'Post-exertional malaise avoidance toolkit' somewhere on their website, which is very helpful.

There's no comparison to being tired and the fatigue us with ME feel is there. I have chronic digestive issues, terrible PEM, the pains and the fog. The whole lot. Its taken 3 years of hell to get a diagnosis. I've had covid 2 times aswell which has left me even worse. I've had every test under the sun and they're all fine. I work as a health and social carer , I've cut my hours down and work are being selective with my rota for who I attend to. I'm 36, and have 2 older children, 18 and 13.

OP posts:

Pixiedust1234 · 28/09/2022 17:11

I'm so sorry. Its absolute pants of a condition. I was diagnosed as having ME twenty odd years ago which seems to have morphed into fibromyalgia. Maybe its the same condition, GPs don't seem to know/care.

Anyway. The pain and exhaustion can bring you down and sometimes that becomes who you are to outsiders. My advice is to have a codeword you can say to other family members so they know you are at your absolute worse. It means "take over, I don't exist for today". That means take over any jobs you had started eg laundry, dinner etc

Original poster

pixiebex86 · 29/09/2022 05:19

Pixiedust1234 · 28/09/2022 17:11

I'm so sorry. Its absolute pants of a condition. I was diagnosed as having ME twenty odd years ago which seems to have morphed into fibromyalgia. Maybe its the same condition, GPs don't seem to know/care.

Anyway. The pain and exhaustion can bring you down and sometimes that becomes who you are to outsiders. My advice is to have a codeword you can say to other family members so they know you are at your absolute worse. It means "take over, I don't exist for today". That means take over any jobs you had started eg laundry, dinner etc

It sure is, and it affects so so much.
I'm just getting through a really bad flare up. I had a miscarriage and covid in June, and it's still taking its toll.
The code word is an excellent idea!! Would never have thought of that, thank you so much

OP posts:

Willdoitlater · 29/09/2022 08:58

Have you learned to meditate? That can really help you get some good quality rest and cope with pain. There are lots of different ways to do it, and you don't have to be religious or anything (although the best teachers tend to be Buddhist). Keep a diary (what you did, how it made you feel) so you know how much/little you can do. Then try never to go into the 'red zone'.