I wish someone had warned me when I first got ME... therapies and treatments

[unicorn7]

Be kind (to yourself):

Your body isn't lying to you. You are sick. You are sick, even if your doctor or your family or your friends roll their eyes. You need to take care of yourself.

Finally, learn to let go of some things and try not to feel guilt over that. You are doing the best you can, and your fight isn't easy.

I agree with the entire post, but this is something that I really agree with. I didn't need some GET-therapy to get myself worse, I did fine all by myself Every new stage, I just kept pushing and pushing and pushing. Every time I would find something that would make me temporarily better (diet change, stop trying to do certain activities, getting B12 shots), I would push myself some more with something else (usually work).

If I would be back seven years ago, I would have taken myself seriously, drop everything and try to get better.
I still feel like it should be in neon letters on my brain: I AM SICK!!! because I still feel my body is lying to me.

I still need to convince myself (or people around me?) that I'm actually sick, by doing to much and having crashes and relapses. I think I only really, really stopped doing that a few months ago, when I had a very big, ver worrying crash and I really started reading about this disease. Before that I was kind of putting my head in the sand.

 

[sb4]

I wish someone would have told me to go on sick leave sooner...before I couldn't walk to the photocopier.

I massively agree with this. I pushed through working for 5+yrs with my heart in the 120-170 range and pounding real hard. I have no doubt that long term damage has been done, even if it's not immediately obvious. Stressing the heart will lead to it failing and aging faster. I had to work because doctors were being useless and telling me it was anxiety, which of course I knew was bullshit. Anyone reading this now who is pushing through, seriously consider quiting and trying to get a dx, its not worth it long term.

But I'm finding Mirtazapine to be much better for lifting my low mood, its helped me initiate sleep and reduced my need to wee 6 times a night to once.

I am also on mirt but I would say to stay on lowest effective dose and dont increase even if sleep effect goes away. It's a real bugger to get off.

 

[Vonjones]

I wish I had known 20 years ago about the danger of standing still. I had discovered that graded exercise gave
PEM but not that standing still would give even worse PEM. Mainly in bed ever since.

 

[Invisible Woman]

I wish I had known 20 years ago about the danger of standing still. I had discovered that graded exercise gave
PEM but not that standing still would give even worse PEM. Mainly in bed ever since.

Absolutely. Standing still is a killer and hurts much, much more than walking very, very slowly. Probably an OI thing I think.

 

[Invisible Woman]

One of the best pieces of advice I heard, but didn't take

"Never stand, when you can sit. Never sit when you can lie down."

 

[Kenshin]

One of the best pieces of advice I heard, but didn't take

"Never stand, when you can sit. Never sit when you can lie down."

I'm taking it now
I also find standing worse than walking, probably to do with circulation, or possibly walking produces adrenaline?

 

[Invisible Woman]

I also find standing worse than walking, probably to do with circulation, or possibly walking produces adrenaline?

I think part of it is to do with POTS/OI issues. They recommend shifting about & crossing one leg over the other while standing. Also wearing flight socks or compression tights.

I think standing is also a lot more painful for some reason.

PEM aside walking seems easier than standing to me. But it's gotta be at the right speed. To slow or too quick makes balance problems and pain worse.

I'm not aware that walking per se produces adrenaline. Both adrenaline and aerobic exercise will induce PEM for me.

 

[arewenearlythereyet]

I'm the same with standing still...I think a lot of us have a sort of metronome in our heads while we are pacing...well I do anyway...if i'm in a queue at the bank or shop, in my head its going move... move... move. I now do that rolling onto the balls of your feet thing....get some strange looks but hey who cares about them. If the queues too long to start with I just ditch that idea and go another day.

 

[Kenshin]

Does anyone have any tips for lying down? (Yes a real question lol).
In regards to OI issues and M.E pain. I often find it difficult to get comfortable particularly my head and neck, I usually end up dizzy and like Im about to black out just from trying to get into a comfy position.

We are constantly told CFS is extreme tiredness. No, we lie down because we are too ill to stand.
So being unable to sleep because of pain due to illness = Tiredness??
(@Biscuit Antagonist don't get me started on queue's lol)

 

[Vonjones]

I'm taking it now
I also find standing worse than walking, probably to do with circulation, or possibly walking produces adrenaline?

In Charles Shepherd,s book he talks about loadbearing muscles, and that seems to fit as standing all the load is on your feet wheras walking it varies.

 

[Subtropical island]

Does anyone have any tips for lying down? (Yes a real question lol).
In regards to OI issues and M.E pain. I often find it difficult to get comfortable particularly my head and neck, I usually end up dizzy and like Im about to black out just from trying to get into a comfy position.

We are constantly told CFS is extreme tiredness.

I'm at the stage where I've got things under control such that I am not tired when I'm not in recovery or on the way down to crash PEM. I need to rest but I definitely don't feel tired. I'm crazy with things I just want to ... get ...to..
...Sometimes, on my way down, exhaustion is a better word, like hypothermia after a few too many days hard labour.

Somewhere, from a researcher, I heard that a recliner (laziboy) is better than flat because it's easier on your heart. So maybe one of those huge square pillows the french have has a use: under shoulders too, plus a normal pillow as needed. Can't confirm (hopefully others know more) but I do get dizzy sometimes lying down too. Especially on waking and when my hands and fingers have gone numb and cold.
Eta: also recently found that, despite a normal blood test a month ago, supplementing magnesium occasionally as needed helped a bit with rib back pain. Surprised me as I didn't think it was cramp. And if you keep taking it you might have to keep an eye on calcium, salt (sodium), zinc, potassium, phosphorus, PTH etc. Maybe best discuss this on a separate thread.

 

[Invisible Woman]

Something Ive not tried - I'd get gripes from the Invisible Man - is raising the head of the bed by 6 inches or so.

Apparently this is helpful for OI as it stops blood pooling in the lower limbs etc.

"Coat hanger pain" is a symptom of OI/POTS.

I have found it very helpful to have a reclining armchair with good lumber support. Because the body is properly supported, the muscles can relax. Spending time in my armchair during the day care help me a lot with overall muscle pain.

 

[CFS_for_19_years]

Does anyone have any tips for lying down? (Yes a real question lol).
In regards to OI issues and M.E pain. I often find it difficult to get comfortable particularly my head and neck, I usually end up dizzy and like Im about to black out just from trying to get into a comfy position.

We are constantly told CFS is extreme tiredness. No, we lie down because we are too ill to stand.
So being unable to sleep because of pain due to illness = Tiredness??
(@Biscuit Antagonist don't get me started on queue's lol)

For lying down, the only way I am comfortable is either:

• reclining on a couch with pillows propped under my head and knees, like this:

For knee support when lying on my back I need something firmer than a pillow. I fold a blanket in thirds lengthwise, then roll it up. Then it is uniformly firm all the way across to support my knees when I'm on a couch. There are also wedges you can buy to place under your knees for support while in bed. I haven't figured out a comfortable way to raise my head in bed, even though I've bought a head support wedge. The couch feels much better. A recliner chair is ideal for this position without the fuss of pillows.

• or lying on my side in bed or on a couch

One can never have too many pillows!

 

[ahimsa]

Re: problems with standing

Here's a short video (4 minutes) about POTS (Postural Orthostatic Tachycardia Syndrome):

https://www.facebook.com/DysautonomiaInternational/videos/1079102622188616/

Most folks on this thread already know about Orthostatic Intolerance (NMH, POTS, etc) so this is mostly for the new folks.

Note that a patient can have POTS, or other types of OI, without ME/CFS. So some of the suggestions in the video (exercise) may not apply to ME patients.

 

[Vonjones]

Re: problems with standing

Here's a short video (4 minutes) about POTS (Postural Orthostatic Tachycardia Syndrome):

https://www.facebook.com/DysautonomiaInternational/videos/1079102622188616/

Most folks on this thread already know about Orthostatic Intolerance (NMH, POTS, etc) so this is mostly for the new folks.

Note that a patient can have POTS, or other types of OI, without ME/CFS. So some of the suggestions in the video (exercise) may not apply to ME patients.

You can have orthostatic intolerance and not necessarily have POTS. I had thought they were the same.

 

[JaimeS]

I didn't need some GET-therapy to get myself worse, I did fine all by myself

Right?! It never ceases to amaze how the 'therapy' the BPS pushes is just plain common sense that we've obviously all tried. I've seen them try to explain this away as in "they tried too hard before they were well" or "they didn't increase gradually enough". It just shows utter contempt for intelligence of the patient. Then they even try to explain POTS as a 'fear' of movement (you know, you stand up and your HR and BP elevates, you're clearly afraid of verticality.)

Does anyone have any tips for lying down? (Yes a real question lol).
In regards to OI issues and M.E pain. I often find it difficult to get comfortable particularly my head and neck, I usually end up dizzy and like Im about to black out just from trying to get into a comfy position.

I have two pillows that really help. The first is relatively firm memory foam and cradles the neck; I always make sure that no matter how many pillows I sleep on, this one is on the top. The second is a tiny, narrow pillow like this:

Maybe a little narrower. When I'm sitting up, I pile all my normal pillows behind my back and put this one right where my neck is. My head is above the top and my shoulders are just barely touching the bottom: Lovely.

One of my early ME symptoms was incredible neck and back of skull pain -- I still have it, but nothing like it was, then. It came much earlier than the complete collapse that caused me to start really spending time and money to find out what was going on.

I one day awoke in terrible pain with my head cricked upward off the pillow in mid-air -- maybe to breathe, maybe because the nuchal pain was just that bad -- and I was somehow asleep like that, with my head held upright off the pillow.

Getting a good pillow with neck support really helped!

I also recommend that, early in the illness, you shouldn't lie totally flat; and you shouldn't lie totally flat when crashed. Prop up on a few pillows at the very least. Just my experience, you sleep better and you feel less ANS strain with heart and breathing. I see others here have noted the same.

 

[JaimeS]

Ah -- I should add that going totally off sugar and grains almost completely eliminated that pain.

 

[Barry53]

I read up on it and then tried myself (idiot that I am!) because there was no available ME service in my area at the time. I just pushed on through till I was hallucinating, quite literally.

No not an idiot at all. Like so many people with ME, I think you probably are the complete opposite of the projected stereotype. Probably wanted to give it your best shot I suspect, and not let it beat you, which is the natural response of someone who is not a quitter. And when the "best" (!!) medical advice tells you you're right ... inevitable outcome.

 

[IreneF]

All this pillow stuff reminds me of being pregnant.

 

[Kenshin]

Thank you all for your replies, I will try the suggestions, though most of them I've learnt to do instinctually.
Support is essential, if I don't feel like I'm "held in place" by pillows or whatever I feel like Im going to fall back or forward (if on side), and this seems to drain energy and get very uncomftable just keeping the body balanced.