My change... PEM? Depression? Other symptom?

[MinIreland]

My symptoms have recently changed and I don't know how to interpret this change.

I used to be mostly fatigued 'in my head' (pressure headaches, brain fog, pressure behind my eyes and in my face) and when I would overdo it, I would get extremely tired but wired. I also had anxiety and sleep problems.

Last summer, I 'crashed' for the first time. I was cleaning (nothing excessively) and suddenly my arms felt like lead and I was extremely tired. It took me a couple of days to feel a bit better again.

Since that episode, my baseline has decreased (eg I am no longer able to go to the gym, and have to rest more frequently).

Since a month or so, things seem to have gotten different/worse again. I don't have that many headaches, but I am extremely tired, mostly physical, feeling very sluggish, heavy ('lead in arms' and when I walk, it sometimes (not always) feels like I'm dragging myself along. I also have zero motivation to do things I used to love (eg painting/art). I just don''t have the energy. I rest a lot during the day and I usually feel a bit better after resting. I am also very anxious and emotional (sad). I also have hours where I feel ok.

I don't sleep well, it takes me hours to fall asleep and I wake up a lot. Then I am flooded with fear which triggers the heaviness in my body and makes me feel worse.

I don't know what to think. Have I been in PEM for weeks? Could I have a drpression? Anxiety? Other?

I know you're not doctors (actually, you might know more!!!) but I'm looking for recognition, possible explanations, your take....

PS. Not sure if I posted this in the right place.

 

[Evergreen]

@MinIreland, so sorry you're feeling so bad. It sounds horrible.

All I can really say is that I haven't experienced anything that sounds like that.

I did once get low mood temporarily when increasing the dose of a drug I had been on for a while, but none of the other symptoms you mention (so no extra fatigue or heaviness or change in sleep or motivation or anxiety).

I would go to your GP. If you're on any new medication or have increased the dose of a medication, talk to them about it in case it could be relevant.

 

[T&O]

My symptoms have recently changed and I don't know how to interpret this change.

I used to be mostly fatigued 'in my head' (pressure headaches, brain fog, pressure behind my eyes and in my face) and when I would overdo it, I would get extremely tired but wired. I also had anxiety and sleep problems.

Last summer, I 'crashed' for the first time. I was cleaning (nothing excessively) and suddenly my arms felt like lead and I was extremely tired. It took me a couple of days to feel a bit better again.

Since that episode, my baseline has decreased (eg I am no longer able to go to the gym, and have to rest more frequently).

Since a month or so, things seem to have gotten different/worse again. I don't have that many headaches, but I am extremely tired, mostly physical, feeling very sluggish, heavy ('lead in arms' and when I walk, it sometimes (not always) feels like I'm dragging myself along. I also have zero motivation to do things I used to love (eg painting/art). I just don''t have the energy. I rest a lot during the day and I usually feel a bit better after resting. I am also very anxious and emotional (sad). I also have hours where I feel ok.

I don't sleep well, it takes me hours to fall asleep and I wake up a lot. Then I am flooded with fear which triggers the heaviness in my body and makes me feel worse.

I don't know what to think. Have I been in PEM for weeks? Could I have a drpression? Anxiety? Other?

I know you're not doctors (actually, you might know more!!!) but I'm looking for recognition, possible explanations, your take....

PS. Not sure if I posted this in the right place.

Hey, sorry your in this horrid circuit… what you describe sounds like classic ME ,no ?

I currently have that heavyness (;leaden body together with early migraine for me, are usually an indication Ive done too much already/PEM …sadly doesnt seem to have much relevance for me whether its alot , or more or less than usual ,re crashing).

Agree with Evergreen re GP chat, or whomever your main go-to is for medical support (some talk of facilitators now).

The emotional fluctuations , wired feeling and disturbed sleep are also familiar… usually part of a spell of overall worse health for me (along with increased temperature dysregulation )
perhaps some sleep assistance could help break the cycle youre in…perhaps if youre sleeping deeply through the day you wont sleep well at night ?
I usually allow myself to “go with the flow”, try not to fight the state Im in, ..
instead Ill distract myself with background soft radio or audiobooks as much as is do-able (TV movies are ideal but its too much for me these days unless I book in a few days literally doing nothing but lying around afterwards).

Stimuli ! For me driving ,or talking with others, even grocery shopping in person creates a sensory overload . Im usually overdone and wired for 2 days after …
theres a balance though in retaining some sanity when Im otherwise in general isolation.

Its probable you have some or all of your suggestions all going on at once… understandable . You say your baseline has lowered ?.
Hope you can discuss with your doctor.
I dont know you obviously but could it be possible that hormonal change may have played a part in these changes for you right now ?.
You may discover positive change after lying around and watching the clouds drift by…

 

[Kitty]

I don't know what to think. Have I been in PEM for weeks? Could I have a drpression? Anxiety? Other?

It's hard to know, but it matches well with normal ME/CFS symptoms. For me, the poor sleep you describe is typical of PEM.

I've only ever experienced a few months of depression, but the lack of motivation was very different to ME/CFS. I couldn't move, and ordinary tasks like answering the phone seemed as huge and overwhelming as moving house.

Lack of motivation in ME/CFS is more like self protection. I might well decide not answer the phone, but it's a response to being too exhausted to deal with a call, not the inertia of depression. I get very short tempered rather than fearful, but it's still an emotional response I guess.

I rest a lot during the day and I usually feel a bit better after resting.

That sounds much more typical of ME/CFS than depressive inertia. Resting doesn't relieve that—nothing does, really. You just have to wait it out.

I'm sorry you're going through such a bad patch, and I hope you pick up soon.

 

[MinIreland]

It's hard to know, but it matches well with normal ME/CFS symptoms. For me, the poor sleep you describe is typical of PEM.

I've only ever experienced a few months of depression, but the lack of motivation was very different to ME/CFS. I couldn't move, and ordinary tasks like answering the phone seemed as huge and overwhelming as moving house.

Lack of motivation in ME/CFS is more like self protection. I might well decide not answer the phone, but it's a response to being too exhausted to deal with a call, not the inertia of depression. I get very short tempered rather than fearful, but it's still an emotional response I guess.



That sounds much more typical of ME/CFS than depressive inertia. Resting doesn't relieve that—nothing does, really. You just have to wait it out.

I'm sorry you're going through such a bad patch, and I hope you pick up soon.

Thanks a million for this response, @Kitty. It helps a lot.

 

[MinIreland]

@MinIreland, so sorry you're feeling so bad. It sounds horrible.

All I can really say is that I haven't experienced anything that sounds like that.

I did once get low mood temporarily when increasing the dose of a drug I had been on for a while, but none of the other symptoms you mention (so no extra fatigue or heaviness or change in sleep or motivation or anxiety).

I would go to your GP. If you're on any new medication or have increased the dose of a medication, talk to them about it in case it could be relevant.

I have an appointment with a so-called specialist in July, so I'll wait that out. I don't expect much anymore, unfortunately. I haven't had any meds change lately...

 

[Mij]

Sorry you're dealing with this. I agree with everything Kitty wrote.

Years ago I was also experiencing what you describe, 'lead arms and legs" out of nowhere, but after charting my symptoms, I realized it was immune related and/or hormonal changes. I'm still able to exercise, and what felt like PEM actually wasn't . It took some time to figure that out.

In the news here recently they are saying allergy symptoms have doubled. I'm experiencing a lot sinus headaches and chest pressure. All this has added to lowering my energy levels.

I've ordered some anti-histamines for vertigo to see if that helps.

I hope your doctor can help. Who knows, maybe your doctor will find something.

 

[Creekside]

My ME is very sensitive to foods, so my advice is to consider whether you made any changes in your diet at the points where your symptoms changed. You can't start a food/activity/symptoms journal several months ago, but you could start one now. Mine has been very helpful for figuring out what factors may have caused a change.

Also, food intolerances change over time, so foods that were safe may become unsafe at any time, so it can be helpful to try avoiding each food for at least a few days, to see whether that has an effect. You can't know that coffee now makes your symptoms worse if you continue drinking several cups a day.

 

[MinIreland]

Hey, sorry your in this horrid circuit… what you describe sounds like classic ME ,no ?

I currently have that heavyness (;leaden body together with early migraine for me, are usually an indication Ive done too much already/PEM …sadly doesnt seem to have much relevance for me whether its alot , or more or less than usual ,re crashing).

Agree with Evergreen re GP chat, or whomever your main go-to is for medical support (some talk of facilitators now).

The emotional fluctuations , wired feeling and disturbed sleep are also familiar… usually part of a spell of overall worse health for me (along with increased temperature dysregulation )
perhaps some sleep assistance could help break the cycle youre in…perhaps if youre sleeping deeply through the day you wont sleep well at night ?
I usually allow myself to “go with the flow”, try not to fight the state Im in, ..
instead Ill distract myself with background soft radio or audiobooks as much as is do-able (TV movies are ideal but its too much for me these days unless I book in a few days literally doing nothing but lying around afterwards).

Stimuli ! For me driving ,or talking with others, even grocery shopping in person creates a sensory overload . Im usually overdone and wired for 2 days after …
theres a balance though in retaining some sanity when Im otherwise in general isolation.

Its probable you have some or all of your suggestions all going on at once… understandable . You say your baseline has lowered ?.
Hope you can discuss with your doctor.
I dont know you obviously but could it be possible that hormonal change may have played a part in these changes for you right now ?.
You may discover positive change after lying around and watchinds drift by…

Thank you, @T

Sorry you're dealing with this. I agree with everything Kitty wrote.

Years ago I was also experiencing what you describe, 'lead arms and legs" out of nowhere, but after charting my symptoms, I realized it was immune related and/or hormonal changes. I'm still able to exercise, and what felt like PEM actually wasn't . It took some time to figure that out.

In the news here recently they are saying allergy symptoms have doubled. I'm experiencing a lot sinus headaches and chest pressure. All this has added to lowering my energy levels.

I've ordered some anti-histamines for vertigo to see if that helps.

I hope your doctor can help. Who knows, maybe your doctor will find something.

Thanks so much, @Mij. I am preparing for my specialist appointment in July. It's crazy but I know I will need to come in well prepared. Symptoms/changes, questions about potential tests and treatments. Ugh, not nice to spend the little energy I have on, but needs to be done to remain a bit hopeful.

I really appreciate all the support!