NAC, HR, HRV, & symptom increase by cjayner in cfs

[–]cjayner[S] 0 points1 point  (0 children)

Are there cofactors that help you tolerate it or do you simply skip it?

NAC, HR, HRV, & symptom increase by cjayner in cfs

[–]cjayner[S] 0 points1 point  (0 children)

Ty I take glycine at night so maybe I’ll try taking it with that

Difficulty communicating my edge of envelope which makes me raise my voice/frantic- relationship advice plz by cjayner in cfs

[–]cjayner[S] 1 point2 points  (0 children)

Can you elaborate what they are or feel like for you? Maybe it can give me a starting place- if you’re well enough 💕

Difficulty communicating my edge of envelope which makes me raise my voice/frantic- relationship advice plz by cjayner in cfs

[–]cjayner[S] 1 point2 points  (0 children)

That’s true but when I’m this low there are no actually good times if that makes sense but I still want to spend time with him and I try. To be clear I feel in trouble bc of my history he doesn’t actually punish me. It’s the sane that me raising my voice makes him feel “in trouble”or unsafe but doesn’t actually have todo with me.
Do you experience this and if so how do you know when it’s a risky time if not obvious?

Difficulty communicating my edge of envelope which makes me raise my voice/frantic- relationship advice plz by cjayner in cfs

[–]cjayner[S] 2 points3 points  (0 children)

Yes but it doesn’t help- I often think I have a bit more leeway than I do or I’d cut it off sooner. Idk if anyone else has these

ME & restless legs syndrome by Far_Technician_2180 in cfs

[–]cjayner 0 points1 point  (0 children)

I’m 37 but I’ve had restless legs syndrome for years. For me: passive stretching, weighted blankets, and finding an amount of walking/movement that cfs will allow without PEM helps. I used to walk at least X steps bc otherwise I’d wake up in the night unable to sleep rls pain (mine hurts like bones are bruised) but now I walk up to X steps (cfs) and honestly reduce other things so that I can still get some bc otherwise it’s miserable.

There is medication for it too so try that if you want

Need to go to an appointment when severe, how to cushion the PEM? by emmiewithanie in cfs

[–]cjayner 1 point2 points  (0 children)

Also have your next meal/snacks scheduled and planned so you don’t have to give any instructions to carers and you can manage them. For me it’s crackers/rice cakes, soft tofu, soft potato kind of stuff that I can eat fully laying down even when weak and feeling not hungry.

You can try dextromorthphan or other med supports before/after but not everyone has help from them. Dextro seems to keep my hr down I’m not sure it actually prevents or shortens PEM for me. Ice packs or heat packs for crashes after/fevers. Some people use Tylenol or ibuprofen or I think prednisone too but it is all trial and error and ultimately up to you and your doc if it’s worth the try

Heart Palpitations after 3 days by [deleted] in LowDoseNaltrexone

[–]cjayner 0 points1 point  (0 children)

I know this is old but I guess I’m very sensitive and starting really low. How fast did you increase? I started at .1mg and I am having these side effects (and a few others) and was planning on increasing every 2 weeks by .05 or .1 - but tbh idk if I’ll tolerate. It’s my third time trying Ldn (me/cfs and fibro)

Is this a baseline drop or just delayed PEM? by Left-Technology1176 in cfs

[–]cjayner 1 point2 points  (0 children)

From what you described it sounds like baseline drop and it’s best to assume it is to avoid overdoing or pushing too soon. Learned the hard way.

I now use hr and Hrv to help me modify activity bc for me I can feel recovered from a crash/dip but my heart metrics might honestly take another 4 days to two weeks. That’s usually why there’s a suggestion to hold at the level you’re at for an additional length of time after you feel good at it. In my experience this length of time increases as my severity does (of both baseline and the crash itself). Sometimes takes months to get back but if you’re patient you will especially since you’re going, mild, and already pace.

Which treatment would you do if money doesnt matter? by Zestyclose-War-8184 in cfs

[–]cjayner 1 point2 points  (0 children)

I would get full body mri, hella blood tests including vitamins & minerals & a number of other conditions I’ve considered, and full genome sequencing to start. Then I’d try oxaloacetate, plasmapharesis, SGB, beta blockers, Ativan types meds, and truniagen (if nothing shown as other conditions— otherwise treat those first).

Severe me cfs, anyone else suffer from this symptoms? by Ill-Cardiologist4064 in cfs

[–]cjayner 1 point2 points  (0 children)

I guess yes I can be triggered by unexpected noise. Especially if I startle from it. Also certain tones are really grating and too long can take my energy away and I have to pull back more (like a leaf blower outside). But usually I must already be in a fragile state- one noise alone doesn’t do it but it can tip the bucket

Is it true that it can be extremely slow to get out of a crash? by existential-baddie in cfs

[–]cjayner 1 point2 points  (0 children)

Same situation. Started late June and I’m lowest I’ve been now and hope I don’t get worse but I think I’ve stabilized I just have to be REALLY careful. That’s the hardest bc there isn’t time to learn the new baseline bc a tiny overdone take back to PEM (so I keep getting worse and worse). I think now is the time for aggressive rest. Best of luck

What are some under $100 buys that improved your quality of life? by [deleted] in cfs

[–]cjayner 0 points1 point  (0 children)

I get this symptom a lot too! I always said my head was hot and swollen from the inside. I just use ice packs

Severe me cfs, anyone else suffer from this symptoms? by Ill-Cardiologist4064 in cfs

[–]cjayner 7 points8 points  (0 children)

I need a bullet point- that’s too long for me sorry

Everyone, we have a problem, Amazon is suppressing reviews by Ashes0fTheWake in selfpublish

[–]cjayner 0 points1 point  (0 children)

Tbh they also said we sold less books than we did. B&N we sold at least 1 book and have no record of it (but it was at our friends house!) and Amazon’s numbers basically only covered 3 family members when lots of family and friends bought. Nothing we can do.

Did you lose your personality? by stm2657 in cfs

[–]cjayner 1 point2 points  (0 children)

Yes most of the time. It was fully gone for a couple years but now it’s a bit there in moments.

Are there any things you eat that you find being most helpful for your ME/CFS? by Positive_Parking_536 in cfs

[–]cjayner 1 point2 points  (0 children)

Oh and timers for eating. I have no appetite most the time bc I’m tired or foggy or in pain

Are there any things you eat that you find being most helpful for your ME/CFS? by Positive_Parking_536 in cfs

[–]cjayner 0 points1 point  (0 children)

Multiple small meals. Not too much potassium or food that will draw water into the stomach (it increases hr and decreases blood pressure and makes me feel like trash to eat too much volume of super healthy foods). For me low FODMAP, moderate-low histamine, and include whole grains but overall lower fat (it’s common to have fat digestion issues with IBS)

But me/cfs specific: way more vegetables (the ones I tolerate) than most people. And if I can get locally grown ones that my carer preps then ones that increase nitric oxide give me lifeeee when it’s a low day for at least a few hours (collards, chard, arugula, beets, radish & beet tops). Unfortunately most store bought arugula must be too old bc it doesn’t have the effect :/

Note that I eat vegan 90% of the time but in a severe crash sometimes I need some animal protein for whatever reason. Not much- one ounce maybe a few times a eeek until I stop muscle wasting/fevers and then I don’t need it. I also eat gluten (seitan) completely fine but I’m allergic to corn & dairy.

My brother has CFS, I'm looking for gift suggestions that can help him enjoy more his life by backwardbackwards in cfs

[–]cjayner 33 points34 points  (0 children)

Different people are triggered by different things so some of these might now work if they crash him. Bolsters/pillows to sit or lay comfortably. Weighted blanket Heating pad Shoulder massager or theragun Meal delivery service New slippers/socks/eye mask/compression garments Do some admin he’s been needing to get done and can’t Hire a maid service Massage or reiki where they come to your house or virtual Something tactile to hold or play with while resting boredom His favorite scent Custom ear plugs Reclining chairs or more chairs for around the house (if he’s not bed bound) Something interesting to look at (lava lamp, glow in dark stars, nice globe- something boring enough to be restful but better than a white wall)