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

[Galena1]

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.

Hello Mya - Be kinder to yourself!:Retro smile: I share your heightened sensitivity to smells, for me it's part of my ME.
If something smells unpleasant it's only natural to want to remove it, so you do, and this is a perfectly understandable reaction. How long do you think someone with a less sensitive nose would leave something smelling unpleasant to them hanging around? They wouldn't. The only difference being that you remove it sooner than those that would remove it later because they are less aware of it.
What you describe as 'daily rituals' may be better described as 'daily routines'. Most sufferers have experienced massive changes in their previous 'rituals' (routines) like work, social life, education etc. These things, plus many others, formed the 'structure' for our lives and replacing them with an alternative structure/routine, albeit very different is, in my opinion, a natural progression. Just because it's a different structure doesn't make it any less valid or important to you as an individual.
Speak to your doctor about the anxiety. You may have to try various treatment options before you discover what is best for you.

 

[Tia]

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.

Yeah, I'm on antidepressants again, but until they kick in I have to take tranquilizers, I try not to, it's only 2mg Valium though, but I think it's really scary that I should be on them until the antidepressants kick in. I'm just so SCARED! All alone with no family or boyfriend and scared like hell of being left alone. I've started CBT though -Cognitive Behaviouial Therapy- but it's not helping, the anxiety is unbarable. I don't know what to do, I have noone that can be here with me and I should be able to be alone to. It's just that since I'm on fulltime disability I'm scared this is my life from now on: sitting in here in the apartment by myself. That's no life.

About the smell, I also react immediately to bad smells and have a strong sense of smelling. Sounds like it's linked to the ME then. People usually react to my sense of smelling so I see it as something good but it really affects me. Like you say one wants to -and DOES- remove the smell immidiately unless it comes from a neighbour and you can't affect it.

 

[urbantravels]

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 hate mindfulness too. There are some complicated reasons for that, some having to do with my personal history, but anything that smacks of meditation, mindfulness, yoga, whatever just makes me very agitated and upset. I've tried to overcome this aversion because so many people have tried to tell me that stuff like this would be helpful, but at this point I think I better go with my gut - it's just not something that works for me.

I do better when I think of things like breathing exercises as just exercises rather than something spiritual or emotional - I have gotten better about deep breathing vs. upper chest breathing or breath holding, though I still often have to remind myself to breathe. And I also think I do better when I find things to "distract" myself from anxiety, pain, angst about my disability and life situation - when I feel able to pursue my intellectual interests, or just watch a silly movie, or talk to a friend or family member about something other than my illness.

Here's a thing: I don't think any of us should blame ourselves for not being "strong" enough to make it without medication. I think we do ourselves a huge disservice when we decide we can overcome what's happening to us - physically or mentally - by sheer willpower. I can't tell you how many people I've heard criticize themselves for being "addicted" or "dependent" when they have to take ANY kind of medication long-term, or people congratulate themselves on "never taking so much as an aspirin," or whatever. There is this cultural value in "toughing things out" that many of us have internalized to a huge degree. I think it sucks, and I say the hell with it.

I think we should do whatever it takes to help ourselves function. For some this might mean accepting the fact that a medication (or other intervention) helps you, and in some other situations it might mean saying "no" to a medication or other intervention that doesn't work well for you. Discerning what does and doesn't work for each one of us is a huge, difficult job and involves a lot of listening to yourself, and then we anxious people have that constant question "Is this what I should be doing?" jamming the signal all the time.

I don't have a magic solution to get rid of that nagging question, but knowing that it's at least partially a physical manifestation of my illness sometimes helps. In the big picture, knowing exactly how much the anxiety is physical and how much it's mental/emotional doesn't even really matter - as long as I can manage to remember that experiencing it isn't my fault, it does not represent a failure of willpower, and that there are at least some things I can do to try and manage it.

 

[Tia]

Urbantravels:

Yeah, i agree with you; there shouldn't be shame in taking and needing antidepressants or medications, just in this last week I've heard of people taking it that I had no IDEA of where on it. It's like someone told me the other day: -It seems lke 70% of those one meets is on antidepressants. And she's right! I hear about more and more people every day that are on them. I just hope they work against the anxiety now so I won't have to live like this because it's unbarable. I can't eat, hardly sleep (!! Usually I sleep about 15 hours a day) and my stomach is really upset and can't keep anything down. (Diahreea, sorry about the graphics.) Heart keeps on racing and the feeling in my chest is just, uh.. So I hope with every fiber in my being that they help.

 

[Sallysblooms]

The neurotransmitters get unbalanced when we are ill and stressed. Very common. My doctor treated that with supplements and I do fine now. Noises and all kinds of things used to be so hard on me.

 

[Mya Symons]

Here's a thing: I don't think any of us should blame ourselves for not being "strong" enough to make it without medication. I think we do ourselves a huge disservice when we decide we can overcome what's happening to us - physically or mentally - by sheer willpower. I can't tell you how many people I've heard criticize themselves for being "addicted" or "dependent" when they have to take ANY kind of medication long-term, or people congratulate themselves on "never taking so much as an aspirin," or whatever. There is this cultural value in "toughing things out" that many of us have internalized to a huge degree. I think it sucks, and I say the hell with it.

I think we should do whatever it takes to help ourselves function. For some this might mean accepting the fact that a medication (or other intervention) helps you, and in some other situations it might mean saying "no" to a medication or other intervention that doesn't work well for you. Discerning what does and doesn't work for each one of us is a huge, difficult job and involves a lot of listening to yourself, and then we anxious people have that constant question "Is this what I should be doing?" jamming the signal all the time.

I agree. My father has been a member of AA for years and does not even believe in taking anything. He just started taking Tylenol for arthritis. For years he would not even take that. I get lectures about taking pills, especially when he found out I take Tramadol. I tried to explain to him that without the medication I wouldn't be able to function at all. I compared it to an alcoholic who was isolated and bedridden from the disease of alcoholism. He doesn't get it. I am not a member of AA, but I made a decision not to drink and have not for 11 years. Perhaps he thinks he is helping. He still influences what medications I decide to take, however. I think of him everytime the doctor offers something new. Parents are so good at that guilt thing.

I also agree that just because a certain medication does not work well for one person or someone else experienced side effects from the same drug you are taking, it does not mean that same drug won't work well for another person. (I do not take sleeping pills or tranquillizers because they did not work for me and had a scary side effect. I did this sleepwalking thing that I would not remember until the next day and one night I got in my car and drove to the mailbox to get the mail and then tried to get into my neighbors house. I did not remember it until the next day when I found my car in a different driveway. That was the last time I took those. As I understand, this does not happen to most people.)

P.S. I take Savella

 

[Mya Symons]

Yeah, I'm on antidepressants again, but until they kick in I have to take tranquilizers, I try not to, it's only 2mg Valium though, but I think it's really scary that I should be on them until the antidepressants kick in. I'm just so SCARED! All alone with no family or boyfriend and scared like hell of being left alone. I've started CBT though -Cognitive Behaviouial Therapy- but it's not helping, the anxiety is unbarable. I don't know what to do, I have noone that can be here with me and I should be able to be alone to. It's just that since I'm on fulltime disability I'm scared this is my life from now on: sitting in here in the apartment by myself. That's no life.

Tia, I am sorry you are going through a difficult time. I can relate about being alone alot. I used to make it across the street to my sister-in-laws house, but I am working now and don't have enough energy after work to walk across the street. I don't have any really good advice cause I'm not sure what to do about this either. When I am feeling lonely I tend to spend a lot of time talking to other people like you with CFS online, and that helps some. I keep on trying to get up on the weekends to go to a live support group and meet people--Hasn't happened yet.

I am curious, What is Mindfullness?

 

[urbantravels]

He still influences what medications I decide to take, however. I think of him everytime the doctor offers something new. Parents are so good at that guilt thing.

I once said to my sister, about my mother: "Of course she knows how to push your buttons! She's the one who installed them!"

 

[Mya Symons]

I once said to my sister, about my mother: "Of course she knows how to push your buttons! She's the one who installed them!"

hee hee, I like that. So true.

 

[Tia]

The neurotransmitters get unbalanced when we are ill and stressed. Very common. My doctor treated that with supplements and I do fine now. Noises and all kinds of things used to be so hard on me.

I'm curious.. What kind of supplements? :sofa:

 

[Tia]

I once said to my sister, about my mother: "Of course she knows how to push your buttons! She's the one who installed them!"

Now THAT'S what you call a fullblown TOUCH!

 

[Tia]

Tia, I am sorry you are going through a difficult time. I can relate about being alone alot. I used to make it across the street to my sister-in-laws house, but I am working now and don't have enough energy after work to walk across the street. I don't have any really good advice cause I'm not sure what to do about this either. When I am feeling lonely I tend to spend a lot of time talking to other people like you with CFS online, and that helps some. I keep on trying to get up on the weekends to go to a live support group and meet people--Hasn't happened yet.

I am curious, What is Mindfullness?

Yeah I couldn't take it anymore so I this morning went to the psyciatric emergencyroom and they contacted my doctor who called me (finally, he is one hard f****r to get a hold of) and immediately said that it was a typical reaction to starting on Fluoxetin (Prozac), so I'm quitting them again and starting om Mirzapim antidepressants instead who has a soothing effect so I won't have to take tranqualizers as I do now. I was so happy when he said immediately it was a TYPICAL reaction, because that meant it wasn't me! Thank GOD.

Mindfullness is a group of people of about ten max, that is a therapygroup. But instead of talking about your problems, you learn to relax. Relaxationexercises. It might work for some, but for me it was all one big mumbojumbo that didn't work one bit. You're suppose to learn to live in the moment...bla bla bla. Martha Linehan wrote a book on the subject.

Man, Mya.. To not be able to cross the street to get to your sisters.. Good god. I want to help you so bad! It's heartbreaking to hear about how other ME's have to live. How old are you? I am 32, and I'm on MSN alot (messenger) so if you want another friend to talk to, here I am! Just PM me and I'll give you my msn-adress. I don't know what country you're from, but I'm guessing the big US? We could compare countries and get to know each other.. Of course only if you feel you have the energy. No pressure.

 

[Sallysblooms]

I'm curious.. What kind of supplements?

In my case, 5HTP and Carniclear helped along with many other good supplements. I am guided by my doctors, I am on a schedule three times a day with my supplements. Integrative doctors should know how to help people, but it is hard to find a good doctor for sure. You have to have a doctor tell you about supplements, amounts and the best brands.

 

[urbantravels]

Glad you got the help you needed from the psychiatric emergency service, Tia.

"Mindfulness" is sort of a catchall term encompassing what happens in meditation and similar techniques. Some people are actually working on "mindfulness" outside the context of meditation or any religious practice, like this center at UCLA:

http://marc.ucla.edu/

My personal feeling about it is that I can achieve something like mindfulness on my own, but any attempt by anyone to "guide" or "instruct" me about it raises my hackles so much that it's counter-productive. There certainly is value in being able to be "in the moment," focus on what's actually happening where you are and in your body, etc., but if someone starts talking about "the breath" in that meditation-y way I immediately head for the exits.

Others have found these formal techniques hugely valuable, of course, and I don't disparage their overall value to many - just that I am personally allergic to them.

 

[Tia]

Urbantravels: Oh yeah, that's right: Mindfulness is originally meditation that comes from the tibetan munks. That's right.. I'd forgotten all about that but I remember now. I still think it's outrageous that they put us who asked for CBT in a group of mindfulness.. We wanted to face our fears and go FURTER in our lives and instead got set back to meditation.. They should be ahshamed of themselves!

 

[Lucinda]

I suffer from anxiety too. Am trying lots of things to try and help it.

I do think meditation and mindfulness help though - if you are well enough to do it. I do struggle sometimes as I am so hypersensitive. I lie down to meditate and the second someone makes a noise my body goes crazy and it kinda ruins the meditation. Similar problem with mindfulness.

There seems to be a little confusion here over what mindfulness is though. It is very simple: Whatever you do, be aware of it. Usually in our lives we are very caught up in worrying, planning, etc etc and not really in the present moment. However, when you practice mindfulness, you simply come into the present moment. If you are washing the dishes, you wash the dishes - you feel the warm water on your hands, you listen to the slight splashing of the water, you smell the slight smell of the washing up liquid, etc. Then, everytime your mind wonders, you bring your attention back. You can also practice mindfulness as a way of relaxing your unease with symptoms. You bring your attention to your body, and feel what is comfortable or pleasant, then feel what is uncomfortable or unpleasant, then focus on everything you feel, staying calm, open and accepting.

It is a practice that will probably help some sufferers and not others. When I am in a quiet 'safe' environment I find it helpful. And you don't have to learn it in groups by the way. You can learn it from books. Living Well with Pain and Illness: The Mindful Way to Free Yourself from Suffering by Vidyamala Burch is an excellent book for teaching chronically ill individuals to use mindfulness and meditation to ease their suffering.

 

[paddygirl]

There is an English hypnotherapist called Linda Hudson who has a stack of self help cd's. They have them at my local library and I've downloaded some to my pc. On really desperate nights when I can't sleep and can't take a pill (as I'm up so early for work,) I play them softly.

I light the lavender burner also and tell myself that my body will now relax and restore for a
few hours. And sometimes my body listens.

I tried a meditation class once which was a disaster, cold room, hard chairs open window onto a noisy road, and strip lighting.

Yoga works too as it helps rid the body of tension, I like to think of it a wringing out a cloth. I frequently started dozing ten minutes into class. Again I use DVDs, (or used to use, too weak lately) usually by Rodney Yo of Gaiam.

No wonder we are anxious tho, I came home from work at lunchtime, straight to bed and can't get up as I'm too weak. Another day of no dinner, tasks undone and friends unmet.

It's ironic that cortisol/stress seems to be responsible for 'feeding' XMRV and making us worse. Just think of all the stress caused over the years by smirking doctors and no hope.:worried:

 

[cher]

Hi all,
Very interested in all your reply's, isnt this great that we all have someone to share our thoughts with on this CFS, if not for all of us banning together, were would we go, who would we ask? Thanks to all of you for sharing your thoughts!!!!!
I too am in this situation at the moment, with anxious thoughts and anxious tummy.

cher

 

[SickOfSickness]

I believe I had existing issues with anxiety BUT believe it's related to why I was predisposed to this illness. My anxiety and other issues are on the autism spectrum and ASD runs in my family. ASD is probably related to CFIDS genetic predisposition.

I also believe I have anxiety due to the illness. They scientifically did studies to show that if someone has certain memory problems, they will compensate by obsessing over the thing they need to remember. I do this and make myself anxious. It works, if I get anxious enough I won't forget but it does cause my day to suck.

I also would say the illness has taught me a lot about being patient and managing anxiety. It has been so many years and I have seen examples of normal people getting anxious in some situations where I am able to just tell myself to not worry. Especially if I am low energy that day, then I get protective of my energy and just decide not to worry and waste energy. I am still overanxious in some situations and when I am trying to remember something.

 

[SickOfSickness]

Oh and I believe once we get sick, our cortisol is often out of whack. Most of us sleep in the day and cortisol and other hormones are being released at wrong times. Mine are that way.