Anxiety in ME-patients (BECAUSE of the ME, not the other way around.)

Hey!

I wonder how many of you with ME are suffering from anxiety and think this is a symptom of your ME? I myself suffer from Anxiety if I'm without my antidepressants. I was totally normal and fine until my teen when someone who helped me in life died, and ever since, I had to be treated for anxiety. I've thought about this long and hard and for so many years now and have come to the conclusion that my anxiety is because of fear of being obandonded since I've been alone most of my life because of the ME. You know: one doesn't have the energy to do everything you want or have friends..

So I thought.. there must be more of you out there that have anxiety BECAUSE of the ME, that you're basically afraid of lying in bed the rest of your life, not being cured and that way will never be able to join others and do all the fun stuff you want to do. Or am I alone in this? :ashamed:

 

Absolutely not alone. All of us have experienced loss to some degree, and even those of us who are okay financially and have supportive family have lost our jobs and have no assurance that we will ever get better.

Not only that, but I think the neurological changes and dysfunction due to ME can cause us to feel anxious even if we don't have anything mental to feel anxious about. Must be the wonky brain chemistry or something.

 

It's beyond me to sort out the body/mind in all of this.

I know I had pre-existing issues with anxiety before I got sick. I also know that anxiety is a perfectly normal, appropriate, proportional response to becoming gravely ill and disabled virtually overnight; losing one's career, social life, and relationships; and being stuck with a misunderstood, incurable, untreatable condition that you quickly learn might last for decades or the rest of your life.

For me, I'd say the ME/CFS had the effect of gravely exacerbating my existing emotional issues, which were predominantly anxiety-based. I've had some problems with depression, especially situational depression around loss of relationships, but anxiety is my much more serious ongoing issue.

The ME/CFS seems to have the effect of making my emotions much more difficult to control. I went from being a total poker face in most situations to being the kind of person who will cry at the drop of a hat, and more so when I'm exhausted and/or in a bad flare. This hurts my pride, especially when it happens in a doctor's office, because it sort of throws the whole conversation out the window and quickly erases any impression I might have made of being an intelligent, reasonable, non-hysterical patient. I've learned to keep talking through it and to explain that it's a symptom of my illness; but it still inevitably freaks people out.

 

Interesting that you mention that because I've been thinking alot about that lately. I've read somewhere that ME can mess with ones chemicals in the brain such as serotonin so it would make sense then. So thankful to hear about more having the same problem, that I'm not alone in my anxiety. <3

 

Woo, that sounds freakishly like how I get.. the pharmacist (spelling?) at the drugstore last friday, asked me how I was, and I started crying in the drugstore. I had to try to keep it in by all means neccesary and it was embarrassing but at the same time I think it's GOOD, because people SHOULD see how one feels because of this! I get so full of sadness and anxiety that I can cry for hours on end, until I exhausted fall asleep, and it doesn't help. And when one gets so desperate feeling badly, one cries right out, and just like you say the doctors find you a "hysterical" patient.. When it's all a NORMAl reaction to being very ill and feeling badly because of it! I've felt all along that after everything one has been through in life because of the illnes, one thing worse than the other, it's a perfectly NORMAl reaction, but they dont get it. If one is emotional one is ..crazy. It's a weird world.. But it means SO MUCH to me to hear about your hell to, because it strenghtens my thought of it being a total normal reaction to an unnormal situation. So THANK you for you're input, you have no idea how much it means to me.

 

Yes it is a symptom that came with CFS and went as I got better. It was so bad when I was in bed completely that even small things like the phone ringing could bring it on! A bad relapse brings it back. As far as I'm concerned it is all to do with ME/CFS as I've never suffered from anxiety being a really strong person emotionally.

 

One of the frequent symptoms measured in myalgic encephalomyelitis outbreaks is 'emotional lability' - rapid changes in emotions.

I don't think I could be classified as having anxiety but CFS, for me, has been filled with muscular tension, breath holding, rushing thoughts, an inability to settle down, etc. so it does ring true for me. My sense is that little stressors in general have much bigger effects in CFS.

 

Approximately 80% of serotonin receptors are located in the gut -- so sometimes anxiety in CFS/ME may be related to intestinal dysbiosis or fungal/candida infections and can be improved by treating the infections or supplementing with different high-dose probiotics.

But yes, different forms of anxiety are definitely a part of CFS/ME.

 

Yes i do suffer from this symptom.. it comes and goes and can be quite severe. Its something i didnt have before i got CFS/ME and got very sick. I think over time having such a serious illness which most dont believe has worn down my ability to emotionally deal.

Also i can feel it suddenly without even having any anxious thoughts there so at those times dont even know why i can end up feeling severe anxiety (this has even happened when im at the same time happy with happy thoughts.. very confusing when one is feeling happy but also anxious for no reason at all).. so i think something chemical sometimes suddenly switches in. Like a "fight" "flight" response kicking in for no reason at all.

 

I recognice this to! When I'm in bed sleeping and the phone rings or I hear the neighbour slamming her front door, I get so angry I just wanna scream at her to shut up, and slam the phone into a wall, but of course I just mutter and do nothing. Still it shows the anger in one. So there's a mix between anxiety, panic, anger and deep sadness, the whole spectra as in depression and anxiety. I'm on antidepressants myself since 1998 and have quit them several times but it always come back, sooner or later. Something bad always happens and I can't cope, so it's right back on them again. I would LOVE to not have to take antidepressants anymore, I'm lucky because I'm on a very low dose, but man.. I really don't want to take them! So if the ME gets cured, and I get psycologically stable, it would be.. Well, I can't even imagine it, it would be BIG. Really big to not have to deal with anxiety or depression anymore and have lots of energy and no POTS on top of that.. It's like a christmaspresent that just keeps on giving.

 

Yeah, it's totally like that! Something other people think is small and not to worry about can (without the medication) make me worry like crazy! I also have problems sitting still for longer periods of time, and it's not ADHD or ADD because they have investigated me for every mental illnesss there is, and it shows nothing. So that too is an indication that the problem is fysiological. I've also suffered from massive muscular tension, they even admitted me because they didn't know what it was (the medicalcare here is incredibly bad) but it was me tensing because of pure anxiety. So maybe that we cant sit still but seem restless most of the time, shows that there is anxiety in us..? Again makes sense; it's not adhd or something like that, but just common anxiousness. And we have all the right to be anxious to, we ARE ill! But..I hope we're getting our vindication.. Not that the doctors will ever apologize, not in this country anyway, but we'll get vindication.

 

Located in the gut? I thought they werein the brain? I thought when you get antidepressants,the body sucked it up and then turned it into serotonin and via the bloodstream went to the brain? Hm, this is something new..

 

another thing you may be unaware of is that sometimes the serotonin abnormality in CFS/ME can be too high serotonin. Many of the abnormalities in CFS/ME can go both ways eg cortisol as well.

 

Really? Wow, I had no idea about this. So that means one can become manic too? As for cortisol I have no knowledge what so ever, isn't cortisol a chemical that releaves pain in the body? And does that mean we are more suseptible to pain? Because that would sure explain why it hurt so much when i had the muscletensions...

 

I'm convinced that something is (always) upregulating our systems. I think we can do something about that - I know we can - but I don't know much. Can't wait to find out what it is...

I just read an interview with Leonard Di Caprio - he says I can't sit still....My mind is shooting all over the place - well that's me - except I can't exercise and he can. More than anxiety....more than 'upregulation"...more than depression.....lots of people have those things and they don't look like people with CFS.

 

Sometimes I will be having a good day and all of the sudden anxiety will hit me. I'll think to myself, "What is going on right now to stress me out?" and I can't come up with anything. I hate when this happens at work because I have to pretend everything is o.k. I definately think what I experience is some chemical reaction caused by this disease. It just makes no sense otherwise.


I understand that feeling of fear that certain people will leave. Sometimes I worry my husband will leave. However, he has this disease too, and he is a good guy. I am lucky that I have such a great husband. It is not likely he is going anywhere.

I used to exercise the anxiety away also before I became ill. However, that was real anxiety attached to real things that were going on, not unexplained anxiety. I used to be one of those people who went to the gymn 5 days a week. I miss that.

 

Umm... XMRV?

 

I think that the anxious feelings are totally controlled by this disease. For no reason I'll feel anxious or like I want to just sit and cry and then ten minutes later, it's like it never happened... What I find that makes this worse is anything that is supposed to help fatigue, like CoQ10, D-Ribose, & L-Carnetine. That is so frustrating. It is like a vicious circle of getting no where. One symptom sabotages the possible treatment of another. The other thing that makes the mind racing worse for me is too much TV or computer time and especially music. A song will play over and over in my head until I think I am going to go mad. This is crushing as I so love music. This illness steals even the most basic of coping mechanisms, so cruel!

 

Anxiety

I've suffered from anxiety since 1998 and have been on meds for it on and off since then. Tried to quit Prozac about 4,5 months ago but now 4 months later I'm back to getting major anxiety again so I'm back on them. What a downfall..! Here I thought I could be happy without them and that I'd become stronger from everything that had happened to me, and it's just the same.. It would be GOLD if when..(or if?) they cure us, we'll get rid of our anxiety to. But I don't dare to hope for that.

You who suffer from major anxiety, do you have any tips on how to cope? Mindfulness doesn't work, tried that, the anxiety gets so high that I can't take it and just want to get rid of the feeling immediately so I can't concentrate on exercises.

 

I am not sure I have major anxiety. My husband would probably disagree. There are some things that help me a bit. Spending time petting and pampering my spoiled cats seems to help. If I focus on them, I won't focus on the anxiety. Talking about how I am feeling with another person, especially someone else with this disease helps. If I can shut my mind off enough, getting into a good book also helps, but it has to be really good. When I can't turn things off at night because all the stimuli seems to be getting to me, I lay down with my ipod on and the music cranked. We have a highway and train tracks right by our house and it tends to drive me crazy. I actually sleep better with loud music on. When I am not listening to loud music, I keep a fan on all night. (This also helps drown out the husband's snores) I also have to have the garbage taken out several tmes a day or the smell drives me bonkers and I can't relax enough to get real rest. I guess I have found some daily rituals that seem to work well for me.

PS I have found that anything I have been prescribed by a doctor for anxiety has not worked well. As a matter of fact, I do not recall ever telling a doctor about this. I think they just assume when you have this disease you need some antidepressants or tranquilizers or some such thing.