Extreme relaxation seems to be the only thing that helps me feel better

[Gzephyr]

My symptom severity seems to decrease from moderate to mild whenever my long distance girlfriend is around and helps me relax. I see her a couple weeks at a time every couple of months, and I've found I have way more energy and can do a lot more activity without getting debilitating PEM. I'll still experience PEM but it's rather mild and not nearly as bad as it usually is.

She gives me massages and just helps me feel more comfortable in general. I find it impossible to be this relaxed on my own. I worry about any and everything and am just a huge ball of stress.

I've always suffered from anxiety and tense muscles my entire life even before CFS. I actually think severe 10/10 panic attacks in the summer of 2020 caused EBV to reactivate and gave me CFS. I get EBV flares if I miss a day of Valacyclovir (3 grams a day) and my CFS gets much worse for a while after. It worsened permanently after I tried taking a week off and I haven't tried that since.

I have a hunch that my immune system has been run down by stress and anxiety over the years and that may be the reason I can't kick this virus. Maybe something to do with my HPA axis? Cortisol?

 

[Judee]

Could you possibly go for massages? Would that help at all do you think?

 

[GhostGum]

I think I am in a somewhat similar situation myself these days, although my gf tends to add to my stress rather than help it, she has anxiety and stress issues herself, it is nice you have someone that can provide that for you.

My whole journey the last few years has turned out to be a far more physiological/postural/tension issues than I ever would have realised, it is like an endless task just to try and do the right things each day to settle into myself and into a more parasympathetic state, I do not think I have been in a proper rest and digest state for 80% of my life due to different factors.

I would recommend starting breath work and doing it each day, especially while resting, just something like oxygen advantage and focus on trying to get into a deeply relaxed state as possible, focusing on breathing into the diaphragm can be good too and shifting awareness into your body more and out of your head. Add meditation to this as well, focus and try and reinforce the feelings and states your gf is able to provide for you, you are capable of doing this yourself without her simply because you have experienced it. Lastly to try to reinforce it more a hypnotherapist might be able to help as well, to again recreate these states and hopefully train your brain to be in it more often. A hypnotherapist who can also do EMDR is ideal, another tool to potentially help this stuff, have been lucky to have one over the years who is trained in a few things.

 

[GhostGum]

Oh and Wim Hof method breathing as well, this can be a bit more intense and tricky for ME people but is worth trying as well, you just want to again try and breath in a way that supports a parasympathetic/relaxed response. I tend to do something in between oxygen advantage and Wim Hof these days, doing retentions after a series of breaths is a good way to focus on relaxing and a bit of meditation.

It is always good of course to do some breathing of some sort to keep O2 up, especially if you start displaying viral symptoms and such, it can really help in fighting off infections, as we know with covid for example blood O2 can drop.

 

[JES]

You could try looking into vagus nerve stimulators or vagus nerve stimulation techniques. There are nowadays consumer electronic VNS devices that you can attach to your ear for example. I found that VNS stimulation gave me temporary remission from symptoms although it didn't work very well long-term.

 

[GreenEdge]

I totally agree with the title of this thread. I think our muscles need to fully relax to reduce fatigue.

Cannabis oil and Tai Chi help me the most.

 

[Violeta]

L-theanine helps me with anxiety and inability to relax.

 

[Consul]

I have improved a bit as well the past few months from doing week long sessions of resting. I only go for a daily walk and a few other non demanding things. My speculation is that the cells have gotten below a certain health threshold where they cant deal with any form of stimulation anymore so you need to somehow get above that threshold again.

 

[Gzephyr]

Could you possibly go for massages? Would that help at all do you think?

It probably could but they’re quite expensive

 

[Gzephyr]

I think I am in a somewhat similar situation myself these days, although my gf tends to add to my stress rather than help it, she has anxiety and stress issues herself, it is nice you have someone that can provide that for you.

My whole journey the last few years has turned out to be a far more physiological/postural/tension issues than I ever would have realised, it is like an endless task just to try and do the right things each day to settle into myself and into a more parasympathetic state, I do not think I have been in a proper rest and digest state for 80% of my life due to different factors.

I would recommend starting breath work and doing it each day, especially while resting, just something like oxygen advantage and focus on trying to get into a deeply relaxed state as possible, focusing on breathing into the diaphragm can be good too and shifting awareness into your body more and out of your head. Add meditation to this as well, focus and try and reinforce the feelings and states your gf is able to provide for you, you are capable of doing this yourself without her simply because you have experienced it. Lastly to try to reinforce it more a hypnotherapist might be able to help as well, to again recreate these states and hopefully train your brain to be in it more often. A hypnotherapist who can also do EMDR is ideal, another tool to potentially help this stuff, have been lucky to have one over the years who is trained in a few things.

Good tips. I do have a therapist who will do EMDR with me. We’re gonna keep doing it

 

[Gzephyr]

L-theanine helps me with anxiety and inability to relax.

I wish it would help me but it just makes me flat and yucky feeling

 

[Rufous McKinney]

r vagus nerve stimulation

warning: do not do vagal neck stimulating stretches unless you know what your neck is doing...

I messed mine up doing ONE. Its been three weeks.......

 

[vision blue]

@Gzephyr For heavens sake, even if you have to start a Go Fund Me or rob a bank, get that engagement ring and entice her to marry you. What are you waiting for? Wish the treatment for all of us was that simple and healthy

@Rufous McKinney can you say more on the neck stretching etc? I few weeks ago i accidentally pushed on my head which felt like i did something funny to my necknand I have been dizze ever since (with a new kind of dizziness. Plus am always interested in vagal nerve attempt stories. What symptoms do you have,? What did you try to do? What do you think yku actually did? Etc

 

[hapl808]

@Gzephyr For heavens sake, even if you have to start a Go Fund Me or rob a bank, get that engagement ring and entice her to marry you. What are you waiting for? Wish the treatment for all of us was that simple and healthy

Agreed. My ex just kept pushing me to 'do more' and get out more and travel. Then when I became completely bedridden from overdoing it, she got frustrated and overwhelmed and left. I think sadly that's the more 'typical' story of human beings.

So if you found one like that…

 

[Judee]

I wish it would help me but it just makes me flat and yucky feeling

What about Gaba supplements? I think some here have mentioned it helping with relaxation.

 

[Long Haul Mono]

What about Gaba supplements? I think some here have mentioned it helping with relaxation.

Personally, GABA didn't really work for me, but still worth a try for others. I've heard mixed opinions.

Relaxation (meditation - not spiritual) helped me a lot. You may say, the lock downs of recent years were a god-send. Working from home I had a nearby place to rest the minute I noticed a crash coming on and was able to mitigate the worst of the symptoms, repeatedly doing this through the day as required.

After doing this for a number of weeks the severe muscle pain/cramps/spasms had significantly reduced. No more trips to the physiotherapist or chiropractor. No more need for prednisolone (thankfully).

But the fatigue continues, and I'm at my worst during the colder months. That is now for me.

 

[Rufous McKinney]

What symptoms do you have,? What did you try to do? What do you think yku actually did? Etc

Firstly, I experience more intense illness on the right side of my body. So it figures, I get this lymphoma report and the main troubles on on the left side.

I think this is related to lymph.

So, the right side of my neck experiences intense WIND. It just POURS OUT. And the left side of my neck does not release any wind at all.

I figure someday my head I gonna fall off, or vertebrae will disintegrate, or someting. So I am convinced this contributes to my awfulness.

Vagal Nerve Mistake: I merely did a stretch to the far left and far right and held it for 30 seconds. While also LOOKING to the far left and far right wiht the eyes. THAT realty did it.

Feels like I pulled ligaments, or pinched a neck nerve or both and its three weeks later. BLECHe

 

[vision blue]

@Rufous McKinney I can definitely see how holding an extreme poaition for 30 sec would not be appreciated by ykur connective tissues and nerves. Sucks

So now did that make it hurt more? Make it feel unstable in a new way? Limit motion more? Its there 3 weeks later (again that sucks) but what exactly is still there 3 weels later?

(Interesting on moving the eyes to the extreme too. Is Idea behind the neck extreme position supposed to be stimulating the barro receptors?

 

[Rufous McKinney]

So now did that make it hurt more? Make it feel unstable in a new way? Limit motion more? Its there 3 weeks later (again that sucks) but what exactly is still there 3 weels later?

feels like my trepezious muscle is ...pinched and it cycles wiht inflammation that keeps stalking me.

When the inflammation an dPEM calm, that calms.

Normally, this type of thing if it does not clear, is what I would get acupuncture for. But I've not been in that office in two years..and seem to not want to go over there.

The more I dont' see living people, it's getting worse, my isolation and reluctance to be near anyone.

Feel like a neon sign says- this one has BLOWN it.

 

[Rufous McKinney]

Make it feel unstable in a new way? Limit motion more?

yes because some pinch is also involved. (years ago, I often got "wind" in my neck (ie. the stiff neck, "cold" in the neck, whatever you want to call it). I had lots of trouble with this, and would get it fixed with my amazing healing who did acupressure/chiro type work. It does't seem to happen much any more, thank goodness. So this is a bit similar.