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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Severe ME

Mivvi5

Guest
Messages
10
Hi all. Severely affected since 1999. Bedridden since 2003. Suffering terribly with 'relapse?' Since April last year when severe pain hit. Mental health declined and was having panic attacks. Moved house. Hospital visits and now i am in such a state. My ME has got worse, its scary, my anxiety is high. I have input from MH team and a good new GP and matrons service.

I cannot seem to get anything back on an even keel. Its all over the place. Health, anxiety seems overwhelming and unmanageable.

So scared of my symptoms. Can anyone please point me in the right direction for good information on severe ME. I am a member of the 25% ME group. I just need to know what i am going through is severe ME.

Any advice would be very much appreciated. Thank you.
 

andyguitar

Moderator
Messages
6,581
Location
South east England
Sorry to hear you are having a bad spell. In your favour is that you have a good new GP. I spent several years doing part time work for someone with the most severe version of ME. They experienced spells like yours and gradually got back to a lower level of severity. It can take many months and depends on what else is going on. Moving house ect will make things worse. You can find your way back. For sure. Hang on in there.
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
So sorry for this terrible long time, of yours, and for the very understandable fears, @Mivvi5

I would ask the new doctor to test for OTHER possible ailments, that could be causing any of your decline,
and ANY of your present symptoms.
Try to get them to look for any other treatable causes, that you might have in addition to the ME, which the ME could mask.

We are thinking of you!
 

Neunistiva

Senior Member
Messages
442
There is so little information about severe ME. I too am lost trying to figure out if something is a symptom of worsening ME or if I developed another condition.

The thing is, when you have severe ME you can't get to the hospital to get the tests. The sicker you are the less available medical services are.
 

andyguitar

Moderator
Messages
6,581
Location
South east England
The positive thing is that the tests you have had are negative for any other illness. It's normal for people in your situation to worry that 'something terrible has been missed'. But as your symptoms got worse many months ago this is very unlikley to be the case. The amount of energy you will use when getting used to a new home will be considerable and i suspect that it is one of the main factors in you having a bad patch.