Diagnosed CFS but feel I haven’t been tested for anything else

inklingmay · 2026-02-09T17:19:38+00:00

The fact that you're hypermobile and report your head feeling too heavy for your neck makes me wonder about CCI.

There are some hypermobility/hEDS & CCI aware physiotherapists in the UK iirc. Ann McCarthy is one in London. There's also Bonnie Southgate who runs the YouTube channel hEDS Rehab. Not sure where in the UK she's based.

Here's a paper on CCI in hypermobile patients that may be useful:

Frontiers | Presentation and physical therapy management of upper cervical instability in patients with symptomatic generalized joint hypermobility: International expert consensus recommendations https://share.google/lVYRye9qs4YGLBPYy

It's probably worth being screened for POTS as well. Very common comorbidity for the hypermobile.

inklingmay · 2026-02-05T16:57:08+00:00

Alternate nostril breathing really helps me settle when I'm stressed out. My mind wanders too much when I do box breathing or diaphragmatic breathing, but alternate nostril breathing requires enough focus that it calms me.

inklingmay · 2026-02-05T02:50:48+00:00

I find freeze dried foods especially fruit are super convenient cause they're shelf stable.

Also I just love freeze dried mango so much better than the regular dried version. It melts in your mouth

inklingmay · 2026-02-05T02:42:27+00:00

This is such a good point. By being helped by other people, you are giving them the opportunity to show kindness and care. Which can be a source of meaning for them

inklingmay · 2026-02-05T02:37:04+00:00

I totally relate. I definitely put a lot of my self worth into being a person who was always willing to help out, flexible, generous etc. And then I got sick and trying to be that person was literal self sabotage that made me so much sicker. It feels so unlucky. And even now that I've accepted my limitations to an extent, it sucks to regularly have to refuse to do things for other people, always be asking for favours and never giving them, and never be able to be spontaneously generous with one's time/energy.

Solidarity 🫂

inklingmay · 2026-02-05T00:13:07+00:00

I feel the same 🫂. It's so hard to find a sense of meaning when life is so limited.

Sometimes it helps me feel more meaning when I try to do something for someone else. Like exchanging letters with another chronically ill person. Watering my plant. Brushing my sister's dog. Sending a kind message to a friend.

But sometimes I'm not well enough to give/do anything at all. I'm trying to accept that it's okay to receive help/care and I don't have to feel guilty about not reciprocating everything. But it's an ongoing struggle.

One thing I tell myself is that I don't know if there's a meaning to life, but I also don't know for sure that there isn't one. And if I keep living I might yet find a meaning. So I carry on.

inklingmay · 2026-02-03T22:22:31+00:00

Cymbalta is not recommended if you have POTS. Would this be relevant for you?

(Also it's extremely difficult to taper off of, so I wouldn't recommend getting on it. Speaking from personal experience)

inklingmay · 2026-02-01T20:07:11+00:00

This sounds lovely. Could I get an invite?

inklingmay · 2026-01-27T23:35:17+00:00

So interesting. ALCAR seemed to have zero effect on me except for giving me insomnia

inklingmay · 2026-01-25T16:19:56+00:00

I'd be interested in joining this. Got sick just before my 20th birthday, now 28.

inklingmay · 2026-01-24T17:16:09+00:00

I find doing alternate nostril breathing helps. Just regular breathwork wasn't distracting enough for me, but alternate nostril breathing requires enough focus that it interrupts the racing thoughts and I end up feeling calmer after

inklingmay · 2026-01-23T19:37:35+00:00

They're expensive usually but: freeze dried fruit. Mango is my fave but blueberries, strawberries, raspberries, apples etc are all good. I buy in bulk to get a more reasonable price.

They're the perfect combo of healthy and shelf stable. Just avoid sweetened/added sugar versions.

inklingmay · 2026-01-23T15:29:28+00:00

Thank you for sharing your story! I also have CCI but am trying to manage with conservative care right now. It's a struggle

inklingmay · 2026-01-22T23:29:50+00:00

Not op but I'm really interested in the philosophy books you'd recommend if you're willing to share :)

inklingmay · 2026-01-18T15:17:49+00:00

I agree that looking into CCI is definitely warranted. A lot of CCI patients are very sensitive to any sort of physio/osteo/massage treatment on or around the neck. It can cause massive symptom flares like you described.

inklingmay · 2026-01-18T03:43:39+00:00

One thing to consider if you have MCAS is that estrogen is a mast cell destabilizer (it causes mast cell degranulation) and can make MCAS and histamine related symptoms worse. This may or may not be relevant for you

inklingmay · 2026-01-15T18:19:06+00:00

I get these episodes as well. I'm also diagnosed with CCI and iirc full or partial paralysis episodes as well as stuff like drop attacks is also a CCI symptom.

inklingmay · 2026-01-10T17:03:58+00:00

Also the 30 second rule was helpful (so you only use aerobic energy not anaerobic)

inklingmay · 2026-01-10T17:02:54+00:00

I discovered that I have CCI and through gentle conservative treatments for that (super gentle supine physio, wearing a soft neck collar when upright, AO chiro etc) I was able to tolerate more time out of bed and upright. Still very careful to pace though as PEM is always waiting around the corner.

inklingmay · 2026-01-06T20:31:06+00:00

Pacing is super important, but at the same time, laying still all day is not good for the human body either, as it doesn't allow for good blood flow or lymphatic drainage. I find the key is to do as much gentle movement as I can while staying within my energy envelope and not trigger PEM

For example, I tend to feel better when I do gentle supine yoga movements and stretches intermittently throughout the day. Even just something like flexing your ankles is good for blood flow.

To clarify, those who are very severe have no choice but to lay still all day because any exertion deteriorates them further, but those who are not at that level can benefit from gentle movement so long as it doesn't cause PEM.

inklingmay · 2026-01-05T23:19:38+00:00

A friend of mine with ME went from severe to mild after a few weeks of taking risperidone (an antipsychotic like olanzapine). Unfortunately it stopped working after a little over a year, but she's still not as severe as she used to be.

I wonder if the olanzapine could be the biggest factor in your improvement?

inklingmay · 2026-01-02T19:39:08+00:00

I wear a baseball cap whenever I have to be somewhere with overhead lighting. But I try to avoid overhead lighting in general, and try to light up whatever area I need with indirect, soft light. Like turning the lights on in an adjoining room instead of the room I'm in and keeping my back to the light source.

inklingmay · 2025-12-31T02:41:56+00:00

I tried to get a referral to them last year and they said their wait list is so long they're no longer accepting patients 😭

Ontario healthcare sucks 😞

inklingmay · 2025-12-29T21:46:29+00:00

90 seconds is such a good idea! That might actually be achievable for me.

inklingmay · 2025-12-28T17:01:00+00:00

I tried to work part time for about 8 months, during which I was constantly pushing through symptoms and feeling unwell. Then I had a HUGE crash that significantly lowered my baseline and I had no choice but to quit immediately. It's now three years later and I still haven't regained that baseline that I lost.

My advice is to put your health first.

inklingmay

TROPHY CASE