#I noticed that running is a lot easier with my rollator

[kirby-the-gorb]

[thatdiabolicalfeminist]

I suspect I have ME/CFS but I'm not clinically diagnosed, and idk how I would even get diagnosed, but do you have any tips for beds or comfort? Do you have any comfort tips for someone who doesn't want to be in bed but fatigues early/easily?

So it's actually pretty important to figure out whether what you're ill with is actually ME/CFS or an illness with similar symptoms. Things that are good for ME patients can make people with similar chronic illnesses worse, and vice versa, and if you have something different to ME (or in addition to it) it may require medical treatment, either to make you feel better or to stop or slow serious damage.

If you have access to a rheumatologist, they should be able to run tests that can rule out lupus and rheumatoid arthritis, and they may be able to evaluate you for fibromyalgia as well. They'd likely run panels to check your blood counts and rule out vitamin deficiencies that can cause things from fatigue to neurological damage.

These are good things to do even if you're 100% sure you have M.E., because some of this stuff is commonly comorbid. (Oh, and if you have M.E. you might wanna get checked out for the most common comorbidities, like POTS or fibro or hEDS or IBS, to see if you can limit the strain your body's experiencing. Treat any comorbid migraines, etc.)

Check out the international consensus criteria to verify for yourself if you have M.E. Your GP may be willing to diagnose you if that's something you need or want to pursue - my original diagnosis was from a family doctor. A rheumatologist is better though, because they'll understand autoimmune stuff and know what to rule out. My rheumatologist caught ME symptoms I hadn't even noticed before.

In general though, being an ME patient means doing a lot of your own research. Doctors frequently know very little and only some are willing to read up on it. Don't let anyone try to sell you on graded exercise therapy - research shows it makes ME patients sicker, but some doctors recommend it anyway since it's good for many illnesses with similar symptoms.

As for what you actually asked about -

I think what you need/want as far as comfortable beds etc is going to be very specific to your particular body.

My main advice is to pay attention and not let yourself dissociate from your body.

People with chronic pain and fatigue often ignore our own bodies most of the time to avoid feeling that pain and fatigue so much, and it means we can have a hard time knowing what helps or hurts.

Experiment and be deliberate about noticing what feels restful and what doesn't.

In bed, you might find that you want extra pillows to support different parts of your body - a knee pillow makes a huge difference for me, and a body pillow under the edge of my back when I lie on my side.

Outside of bed, sit often and sit comfortably. As much as possible. I have found that it's WAY more draining to let my legs dangle down than to pull them up and cross them, so I sit cross legged a lot. I also have a day bed in the dining area so I can lie down when I get tired without missing out on socializing, or without leaving the room when I'm cooking. I've found that a chair with a back is less tiring than a chair without one. I also have a wheeled stool in the kitchen so I can cook sitting down and move around the kitchen without walking. It’s a lifesaver.

If you're not already using a mobility aid, consider getting one. I tire way, way less quickly with my rollator than I do with my cane, and I tire way less quickly with the cane than I do walking unsupported. (Also, some rollators and even some canes have convenient sitting when you're out and about!)

A cheap hand-propelled wheelchair doesn't save me energy unless someone else can push, but fancier ones are much easier to move, and motorized ones are least draining of all.

But honestly a $10 cane can be a lifesaver all on its own, even if you only use it on big fatigue days or when no one else is around.

Pay attention to whether light or sound tires you out, and if it does, try to reduce light and sound in the area where you rest. Same with other sensory input that can be quietly fatiguing. You may want to limit this input even outside of rest, so you don't wear out as fast. Lastly, if you're pretty sure you do have M.E., read up on pacing. My rheumatologist gave me this very easy to understand, nicely packaged guide to pacing, complete with charts to help you keep track of your activity patterns and explanations for friends and family so they can understand enough to be supportive.

Pacing is the number one best thing you can do to protect your health if you have M.E. The less often you go into post exertional malaise, the more ability you will retain.

Sorry this is so long but I hope it helps!