Agoraphobia and anxiety anyone?

[Jemima37]

Has anyone suffered agoraphobia and severe social anxiety since having CFS. Its destroyed my life in so many ways.

I haven't been able to attend appointments the last 2 years which scares me with things being overdue and I've discussed these on a previous post this year. I can't attend family days out with my husband and children. It's really difficult. The anxiety and guilt I'm letting my children down is hard each day.

I had agoraphobia 6 years ago after I was attacked by my brother but within a year I was ok after therapy and getting out to things again. It would be there but very mild. Then these 2 years since the cfs worsened its returned and I can't socialise or have visitors or get out.. I say to my husband if the cfs would lift I know I'd be getting out, it's just how the cfs affects me every single day that stops me, rather than true agoraphobia, it has led to me struggling mentally again. It's so hard when you feel you cant stand upright for more than 5 minutes to feel confident walking about, I get anxious just walking at home some days. Cfs has a lot to answer for.

I'm just wondering if I'm alone in this. I found this hard to post incase I sound ridiculous.

J

 

[YippeeKi YOW !!]

I'm just wondering if I'm alone in this. I found this hard to post incase I sound ridiculous.

Oh, you absolutely are NOT alone, and you definitely don;t sound ridiculous.

Not long after this clammy little wet blanket of an illness hit me, I had my first public panic attack, and then realized that I'd been increasingly resistant to going out, or to parties, or to dinners out with friends or to the movies, or to anything that took me out of the safety of the four walls of the master bedroom here. I'd put that down to the general crappy feeling and exhaustion I was experiencing.

This little @ss-kicker took me from being reasonably gregarious and fun loving to living like Emily Dickinson. Without the poetry.

So you totally are not alone !!!

 

[Jemima37]

Oh, you absolutely are NOT alone, and you definitely don;t sound ridiculous.

Not long after this clammy little wet blanket of an illness hit me, I had my first public panic attack, and then realized that I'd been increasingly resistant to going out, or to parties, or to dinners out with friends or to the movies, or to anything that took me out of the safety of the four walls of the master bedroom here. I'd put that down to the general crappy feeling and exhaustion I was experiencing.

This little @ss-kicker took me from being reasonably gregarious and fun loving to living like Emily Dickinson. Without the poetry.

So you totally are not alone !!!

Thank you so much Yippee. It's awful isnt ut and thank you for making me feel less of a freak.

I was just downstairs maning some lunch, there was a knock on the door (yup I cant even answer the door due to severe social anxiety) and it caused such a huge surge of adrenaline I panicked. I waited till they left and then went upstairs all shaky and woozy,where I had an hour's panic attack on my bed due to the huge surge it gave me. Wow that's never happened before, so of course I sat beating myself up that I must be a complete lunatic and wont ever be part of society again. I'm ashamed to even share this but what the heck I'm totally honest here lol.

Thank you. Your reply cane at the right time x

Ps my lunch went cold but I've no energy to go back down to make anything else after that so cold beans on toast it is lol. I've just been in a 2 day crash after a shower and hair dry Tuesday, it caused me to crash, my bed is my safe place lol.

 

[YippeeKi YOW !!]

there was a knock on the door (yup I cant even answer the door due to severe social anxiety) and it caused such a huge surge of adrenaline I panicked.

I've had the same reaction .... a knock, the phone ringing, or the doorbell can cause tachycardia, dizziness, head-pressure, and weak muscles, esp in legs ..... for me, the fix has been magnesium with specific dose and time nterval schedule ...

I've just been in a 2 day crash after a shower and hair dry Tuesday, it caused me to crash, my bed is my safe place lol.

Wow !!! THis is a common moan here. Washing and drying hair is a punitive energy drain, as is, for me at least, just plain bathing with all the scrubbing and rinsing (we have very hard water here, and getting the soapy residue off is incredibly hard) and drying off.

So no, as you van see, you're not the east bit strange or unhinged, and you're in the right place !!!

 

[Jemima37]

I've had the same reaction .... a knock, the phone ringing, or the doorbell can cause tachycardia, dizziness, head-pressure, and weak muscles, esp in legs ..... for me, the fix has been magnesium with specific dose and time nterval schedule ...

Wow !!! THis is a common moan here. Washing and drying hair is a punitive energy drain, as is, for me at least, just plain bathing with all the scrubbing and rinsing (we have very hard water here, and getting the soapy residue off is incredibly hard) and drying off.

So no, as you van see, you're not the east bit strange or unhinged, and you're in the right place !!!

Thank you again.

I am extremely sound sensitive and having social anxiety it was a double whammy. I'm feeling better now but it was horrible at the time.

I'm so sensithve to light and sound recently. Even going on phones or screens for a long duration over the day causes me to crash recently and my eyes will feel so sensitive to light, like they have surges of adrenaline in them, which can trigger anxiety, so I have to lie in a darker room. It's strange and scared me I had issues with my eyes but maybe it's just the cfs. Same with the sound.

I shower every 3 days and do my hair every 3 to 4. Sounds awful I know. I do a wash at the sink every day, sometimes twice as I worry not showeinf daily like I used to but having cfs I just cant. I also never wash my hair in the shower aswell as having a shower as it's too much exertion and then I use more energy drying my hair. Hence why I crashed this Tuesday. I usually wash my hair over the sink and dry it which can wipe me out but doing a shower and hair wash on different days doesnt usually cause a crash. Now I've had a 3 day crash from the shower Tuesday as I was really stupid doing it all at once, my hair is due tomorrow or Saturday and I'm already stressing incase I'm still not up to it. I dont want to make the crash worse but I gave naturally greasy hair after 2 days lol.

I am hard on myself lol.

Thank you for your kind replies. They have helped.

J

 

[YippeeKi YOW !!]

I'm so sensithve to light and sound recently

It's strange and scared me I had issues with my eyes but maybe it's just the cfs. Same with the sound.

I know that I'm startng to sound like a broken record, but this is extremely, and I mean really, really, extremely common with ME/CFS

I shower every 3 days and do my hair every 3 to 4. Sounds awful I know

Not at all. I'm embarrassed to tell you how long I go between shampoos .....

I dont want to make the crash worse but I gave naturally greasy hair after 2 days lol.

I did, too, but I've read, and since had discovered for myself, that the longer you go between shampoos, the less oil your scalp produces. Have no idea why that is, but there you have it ..... apparently it has something to do with removing your scalp's natural oils during the washing which convinces your follicles that it better start pumping out a lot more of the same .....

I am hard on myself lol.

You are. But we all are. The amount of self-blaming and guil-tripping that accopanies this vicious little pit adder of an illness is just mind boggling. Just know, as you start to roll out the GuiltMobile, that it's a common ride, and one that you really don;t have to take.

Much easier said than done, I know.

 

[Jemima37]

I know that I'm startng to sound like a broken record, but this is extremely, and I mean really, really, extremely common with ME/CFS

Not at all. I'm embarrassed to tell you how long I go between shampoos .....

I did, too, but I've read, and since had discovered for myself, that the longer you go between shampoos, the less oil your scalp produces. Have no idea why that is, but there you have it ..... apparently it has something to do with removing your scalp's natural oils during the washing which convinces your follicles that it better start pumping out a lot more of the same .....

You are. But we all are. The amount of self-blaming and guil-tripping that accopanies this vicious little pit adder of an illness is just mind boggling. Just know, as you start to roll out the GuiltMobile, that it's a common ride, and one that you really don;t have to take.

Much easier said than done, I know.

Thank you so much.

If I cant do it again until Sunday or monday even, so be it. This crash needs me to rest. Last year I crashed for 9 months and I couldn't wash my hair for 12 days once. That was awful and I guess now it's why I'm so anal about hair washing as I'm so used to doing it daily or every other before I was ill and I never want to go back to how i was last year. I was in a very bad place with the cfs, anxiety and depression then. Much worse than I am this year. Greasy hair reminds me of the me I was last year. So I get stressed if I cant do it every 3 to 4 days.

Really (the eyes)? If I go on screens a lot one day, the next I have awful rushing surges in my eyes, I cant handle light and I feel like my eyes have adrenaline in them. It's odd and scary so I'm trying to limit my screen time but its hard when you're resting. Sometimes screens even cause me to crash. I was worried what the eye surges feelings were. Maybe it is cfs? I've never heard this before.

J

 

[YippeeKi YOW !!]

It's odd and scary so I'm trying to limit my screen time but its hard when you're resting. Sometimes screens even cause me to crash. I was worried what the eye surges feelings were. Maybe it is cfs? I've never heard this before.

Not a medical prfessional here (thank God) but from everything I've read, both in these many, many threads, and while I was doing endless research, the eye thing definitely seems to be a standard with many ME/CFS sufferers.

For the eye strain from computer monitors or TV, I've found that using amber glasses over my readers reduces the stress and the other reactions pretty dramatically. Here's a link to some cheap and effective ones on Amazon here in US, and since it's a German company, Im guessing that you'll be able to get them on Amazon.uk ....

https://www.amazon.com/Uvex-S0360X-Ultra-spec-SCT-Orange-Anti-Fog/dp/B003OBZ64M#Ask

And here's a pic of them, just for reference:

​

 

[ljimbo423]

I shower every 3 days and do my hair every 3 to 4. Sounds awful I know.

When I was severe, I use to shower about every 4-5 days, that's the best I could do and that was an incredible struggle!

Has anyone suffered agoraphobia and severe social anxiety since having CFS. Its destroyed my life in so many ways.

I have. I use to have high anxiety every time I left my house. I use to get anxiety attacks whenever I would need to checkout at a grocery store or anywhere.

These were really bad, my heart would start pounding like it was coming out of my chest, my face would turn bright red and I would start sweating! It was horrible, both extremely uncomfortable and very embarrassing.

What's really bizarre, is that I started aggressively treating gut dysbiosis and leaky gut about 2 1/2 years ago. I started by taking 2 courses of Rifaximin for SIBO. Much to my amazement, the Rifaximin stopped my anxiety attacks that I had been having for years!!

I still had a lot of anxiety but no more anxiety attacks. I am convinced that my CFS is being caused by my gut, both dysbiosis and leaky gut. I also am fairly certain that my anxiety is being caused in large part, if not exclusively by my CFS.

If I take anything to kill off the bacterial overgrowth in my gut, my anxiety goes through the roof! To me the connection is very clear.

I have found a free self-hypnosis video online that has helped tremendously with lowering my anxiety even more. The anxiety I have now is fairly mild compared to that crippling anxiety I had before and it continues to improve with this video.

I don't know if you are interested or able to listen to this but I will post it anyway. If you can't maybe somebody else will find it helpful. The same guy has many other videos on youtube too, that are much shorter, only 15 minutes.

 

[YippeeKi YOW !!]

@ljimbo423
Thank you for that self-hypnosis YouTbe ..... terrific, and another good addition to our anti-anx arsenal .... and thank you, too, for confirming the connections between anxiety, agoraphobia, and ME/CFS.... while one opinion is nice, more than that are really supportive !!!

 

[Hip]

Has anyone suffered agoraphobia and severe social anxiety since having CFS.

I've had some transient social anxiety appear, as well as generalized anxiety disorder. Choline bitartrate is a supplement known to help SA, and this work very well for me, eliminating SA within an hour or so of taking around 500 mg.

 

[Jemima37]

Thank you all so much. For the reassurance on the anxiety and eye symptoms. I really do appreciate it.

I shall check out those glasses. They look cool.

I'm trying to cut dairy out of my diet. I'm already gluten free to see if it helps my stomach issues and who know it may help the anxiety. I eat a lot of cheese which isnt good at all.

J

 

[Rufous McKinney]

I have found a free self-hypnosis video online that has helped tremendously with lowering my anxiety even more. The anxiety I have now is fairly mild compared to that crippling anxiety I had before and it continues to improve with this video.

The agorophobic reaction can set in once the Panic becomes too intense to want to face.

This agoraphobic is likely part of the Sickness Behavior Response. My doctor seems to think this is a perfectly normal reaction. Thats rather refreshing.

If your body is more sick after appointments, interactions, outtings, it doesn not want to be more sick, so it does not want to go along with that plan or idea.

For me: its the blood sugar then unravels.

 

[ljimbo423]

This agoraphobic is likely part of the Sickness Behavior Response. My doctor seems to think this is a perfectly normal reaction. Thats rather refreshing.

That's what I think too. When my CFS flares, my anxiety gets worse. When I feel fairly healthy, my anxiety is usually much lower. There's a definite connection from my CFS symptoms to my anxiety.

For me: its the blood sugar then unravels.

This is another biggie for me! I try to make sure I eat at least a snack before I go anywhere. If I don't, often my blood sugar drops, my energy tanks and my anxiety goes way up.

 

[Rufous McKinney]

When my CFS flares, my anxiety gets worse.

totally....intimately connected. Food, immediate food must be within reach ....like even just grapes or something....the jar of peanut butter and a spoon. Grab. Portable.

Was just re-reading about sickness Behavior....having just hung up from my herbalist, who asked me to come in to "treat my anxiety" as I describe my neck, lymph and visual problems. I yelled. (we know each other well enough that I can yell and he will still say I"m anxious). Slap him up side of the head, next time.

Like i just read- how all one needs to do is put the cell walls LPS in the bloodstream of a test animal and that animal has the list of Sickness Response Behaviors. That includes- Don't leave the cave, do not proceed to the watering hole, do not gather firewood now.

Those behaviors got us here.

 

[Rufous McKinney]

There's a definite connection from my CFS symptoms to my anxiety.

My recent excursion, three months visiting a foreign country and my new grandbaby...that resulted in failing to PACE. Despite trying. Forgoing about 2/3 of all activities at least. wasn't enough not doing.. Afternoon break is not enough rest.

Being nearby other people daily, chatter, being with..simply costs us Spoons.

So- often I didn't get out of where I was staying..until like later in the afternoon, where in I invariable seem to collapse on the field trip whatever it is. I'm not functioning at this time of day, the energy is gone now, the symptoms swarming and worsening.

But then one day, we went out to brunch, earlier in the day with friends. I was entirely functional. Sickness Behavior had not yet started for that day. I was still in the window of having some energy..I could eat food with friends, we chatted, I felt good.

My son-in-law...who seems to love me, and I presume does not understand this: got really angry when he heard I had been actually functional (he was not there). Well, every field trip we've been on didn't start til 4 pm and my 2-3 hours of functioning were already over with.

It was really interesting for me to see that happen. I now more firmly believe this is Sickness behaviors, adaptive and understandable.

Forgive Self for this Imperfection.

 

[Rufous McKinney]

I was just downstairs maning some lunch, there was a knock on the door (yup I cant even answer the door due to severe social anxiety) and it caused such a huge surge of adrenaline I panicked.

Yeah that. The phone can do that to me. Perceptions are being suffocated, sweltering beneath stagnant squelching bleche which the body knows about exactly and keeps sending warnings.

But if one can get blood sugar calm, if one can PACE outtings better, those tools are helpful.

(I'm only now allowed an even smaller one cup of coffee).

 

[ljimbo423]

Like i just read- how all one needs to do is put the cell walls LPS in the bloodstream of a test animal and that animal has the list of Sickness Response Behaviors. That includes- Don't leave the cave, do not proceed to the watering hole, do not gather firewood now.

Those behaviors got us here.

I agree completely! The print I bolded is exactly how I feel when in a flare!!!

 

[Rufous McKinney]

I agree completely! The print I bolded is exactly how I feel when in a flare!!!

Now carefully observing the latest Flare...after the dental cleaning. I did considerable "work" to not be anxious and was not shaking at the actual appointment (dental is a big deal here)....

I now realize the dental cleaning did an LPS dump, and that explains I was convinced I'd be only slightly tired but seem to now be in the full PEM.

Bratty illness. It should make appointments, not just show up.

 

[YippeeKi YOW !!]

The agorophobic reaction can set in once the Panic becomes too intense to want to face.

For me, the agoraphobia came first. The panic followed a bit later.