Anxiety

[sunshine44]

Since my August crash from supplements I have been dealing with extreme anxiety and agitation most every day and night...its now December. I am worn out It is almost like this is the default button for now. The POTS stuff definitely triggers it as well.

Trying to ride the waves but looking for those that have made it through severe anxiety episodes of long duration.....

need to hear from the other siders

 

[Shoshana]

Oh gosh, that is so very wearing and draining and difficult @sunshine44 !

I HAVE found that sometimes something lasts for way to long like this, and yet, surprisingly, it DOES subside and even fade away. SO it might, ANY day, and we hope it is very soon for you on this!
I have had severe symptoms of various types, that seemed like they would never end, but they surprisingly did.
SO they could.

Meanwhile, I would like to suggest some suggestions
but as you see by my wording, I am fading out, and cannot think well. SO I cannot remember any, atm.

For tonight, I will let you know I am thinking of you. I hope others will be awake and cognitive enough to respond, soon, too. Or later. We are all flexible, here.

 

[5150]

This may be different, but it's been working lately.

Two tinctures taken when anxiety is First noticed.
1.Sleep Ease, by Woodland Essence [catnip, passionflower,Linden flower, Calif poppy, & chamomile]
2.BaikalSkullcap, from dried root , also made by Woodland Essence

mix in a glass container, following directions; if anxiety is just beginning, mix a lighter volume & sip on it.

prior to bed, make the stronger version. If this all fails you, maybe talk to a CFS/ME literate doctor about the pharmaceutical approach. In my experience, supplements don't get the job done.

 

[Richard7]

Hi @sunshine44 I have had major issues with anxiety too.

The biggest improvement came with taking Hip's mix of turmeric, flaxseed oil and N acetyl glucosamine. It was really a day and night thing for me. https://forums.phoenixrising.me/ind...nxiety-symptoms-with-three-supplements.18369/ its a crazy long thread but all the info you need is in paragraphs 2,3 and 4.

Hip finds that this seems to work in half the people who try it and it is reasonably cheap, so worth a try.

I have also found that yakult was effective for me. There was some research done in Canada using a powdered form of it. And it seems to me to work in a way that mitigates PoTS. Yakult says that it is l casei shirota. L casei was only defined in the 70s and since gene sequencing has been around some strains of l casei have been reassigned to paracasei and rhamnosus. Yakult is really l paracasei.

Taking 3 yakult a day really works for me, but I am trying a ketogenic diet (which has further reduced the severity of my PoTS) so I have played around with strains of l casei, paracasei and rhamnosus to see what works. I am currently using some l paracasei and l rhamnosus of unspecified strains that work well individually but better in combination. I also found l rhamnosus GG and L paracasei lp 33 to work for me.

Apart from the above I find it important to deal as best I can with the PoTS. I have been unable to get competent medical help, so its about salt potassium, avoiding anything that will increase inflammation and not spending too much time standing up or with too high a heart rate.

Oh I should also mention that I found reducing gut permeability and inflammation really important. I found this video a useful resource

. Though I sometimes find it hard to remember all the details: last week I decided to use a brand of coconut cream with one of the thickening/emulsifying agents that damage the mucosal barrier and that was pretty bad.

 

[Stretched]

Since my August crash from supplements I have been dealing with extreme anxiety and agitation most every day and night...its now December. I am worn out It is almost like this is the default button for now. The POTS stuff definitely triggers it as well... .

I feel for you. Anxiety can be pins and needles or body jerking - very uncomfortable. I quit Valium after using it ~6 mos for sleep and got a bad case of anxiety. I had to get an rx for short lived Xanax, 1mg x 2-3 day, and very cheap. It helps immensely and doesn’t seem to have the withdrawal effects of Valium, which has a much longer half life. While rxs aren’t ideal they sure beat the discomfort of anxiety

 

[jesse's mom]

hi @sunshine44 , I have the anxiety and insomnia. I take meds and supplements, but you know about me. Just letting you know I see your thread and am sorry you are suffering.

Have you been tolerating any new foods, or tea, maybe chamomile?

 

[Wolfcub]

@sunshine44

I am sorry you are feeling this. The herbs that @5150 suggested may help. It might be worth a try?
I vouch for Skullcap. It is a good anti-anxiety herb, and so is Passionflower. They are both mild on the system (in my experience at least)
There are others such as Lime flower, Lemon Balm, Lavender (yes Lavender flowers can be drunk as a tea), and possibly St John's Wort. But you would have to see if they suit you of course.

I do hope this awful feeling just passes. Sometimes attacks like this come to plague us and then mysteriously disappear!

 

[sunshine44]

thanks everyone I am currently allergic to all supplements. That's one of the issues. I can do small amounts of Ativan since August. Just not fun though.

 

[jesse's mom]

Were you able to add beets yet? It is a liver food.
I was wondering about the tea? No?

 

[sunshine44]

no, haven't been in a good window to introduce.

yeah no on the tea, I began having lots of reactions to all my teas last year.

Feeling really over all of this right now.

So tough.

Somehow, I pray my body will stabilize more.

 

[jesse's mom]

It will! hold on to the thought of doing your daughter's makeup!
Are you sitting up more and more every day or so?

 

[sunshine44]

my arms are getting stronger than last month and yes I am doing my best too. Feeling really down lately though and somewhat crazy after being in a bed for so long now and at that not even comfortable so often.

 

[Shoshana]

What I found with myself, during the times when I have no strength and very limited range of motion,

is that I must accept going Extremely slowly, by doing just one movement at a time, no repetitions, and not increasing daily. Being certain I can maintain a very small goal daily, comes before I add on at all.
Even some days off in between, or adding, but ONLY in very, very tiny increments.

Something like, the slow turtle wins the race.
I cant remember the correct saying.

But over 6 months time, I do better, and see some actual improvements,
only if I stick with a very low and slow movement conditioning plan, instead of trying to do more, faster, and finding I then cant move, again.
Back to square one, is not a good place, and we can try to avoid that, while at the same time, trying to increase with extreme gradual caution, over a longer time frame.

Just sharing what i have had to do, and I HAVE had some bit of success with that approach.

Pushing or adding too quickly, overdoing by even just a little, has always caused me very bad and very long setbacks.
Of course, someone else could be different from what I have experienced with my body.

Always thinking of you, @sunshine44

 

[jesse's mom]

@sunshine44 @Shoshana has been one of my mentors in my adapting to my new normal, and I have to agree that I have to build very slowly, and rest before I am tired. I know it is crazymaking! I know that most everything feels strange and wrong! We are here with you, and we are not going to let you down if we can help it! Slowly, slowly I have gotten a little better.

 

[Shoshana]

Yes, try your hardest to not feel discouraged when you do a very small thing. Try not to think it isn't enough to make a difference, because I truly believe it is.

It might seem small but it is big for us. And if you could sit up for a very short time, even only once each day, and/or do a few arm movements, only once or twice a day, for a while, before adding on,
it perhaps seems not enough to build up,
but I have personally found it is the only way that I can, and do, succeed in building at all.

Tiny things, very slowly, are noticed by our body, and they CAN help us rebuild, even if someone else doesn't think its enough to build up.
Just sharing my own ideas, from my own experiences.
In case they might help you.

 

[Shoshana]

We have been taught that "more is better"
but for some of our illnesses, that is not true, in my experience and in my own research.

Whether or not one has "post-polio syndrome"
the advise from those experts has been true for me, that we actually need to conserve to preserve,
pushing into overdoing often doesn't work, or we would all be completely better by now.

 

[sunshine44]

You guys are angels to me today. I just started sobbing....because I keep hearing in my head "I don't even kow how to keep doing this"...I have family that wants and needs me better and I desperately want to improve and the past 4 months I live in constant fear I will end up like Whitney from Unrest, bless his heart, because I have been in SUCH a difficult place since February and now August crash.

And you guys both reached out to me over and over again, so calmly.

I have spent all of our money on cures over the past 3 years especially, I have no money left for caretakers, oop drs, etc. yet have a husband whom is very angry and declares everyday this is not what he signed up for.

Then I picture myself dying from one of these horrific night episodes I keep having with POTS and I can not really move to go to bathroom, etc. and my brain shakes ...and imagine my children finding me....and its just so much. Not to mention my eyes are closed so often and my children have such a limited version of me right now. I am a bed mama.

Somehow, someway I know there is a decent chance my body will stabilize more if I just keep doing what you guys are saying of going slow. Just the POTS, mast cell and lyme and me.cfs is so overwhelming.

I just have to tell myself I am doing the best I can and am healing despite there not being a 'cure'.

 

[sunshine44]

Thank-you <3

 

[jesse's mom]

Whether or not one has "post-polio syndrome"
the advise from those experts has been true for me, that we actually need to conserve to preserve,
rather than "no pain, no gain"

See @sunshine44 , that's what I'm talking about!

I can see from your first post that you are in fact doing better!
I call it "low and slow" no turtle emoji...

 

[Shoshana]

Even tell yourself there is a chance you will heal, sometimes that is enough to keep me going, when it is hardest for me to fully believe it.

BTW, your husband should write that stuff down or go tell someone else. He doesn't need to be repeating it to you any more.
It is not your fault that he is in this challenging difficult situation.
ANd you are in it, as well.
It is not your fault that you are ill.


Did he forget the, in sickness and in health, or the, for good times and bad times ?

If so, ask that he have someone else give him some support and remind him, that it is difficult for him, yes,
but it is VERY difficult for you too, YOU are not the one at fault, you didn't plan this, you cant fix it quickly,
and he needs to not make things even worse for you.

You HAVE tried your best to get well,
you are trying your best, to get well, and to cope , in the meantime.
NO one can ask any more of you.
You cant expect more of yourself.
Neither can he.

You are trying. That is all, and it's enough.
He needs to try to cope better, also.

If he doesn't, then you just keep on coping the best that you can, you deserve it and so do your children.
It is not your fault that you cant do more with them, at this time, than what you do.

SO sorry this happened to you.