How to deal with it

[Cshell]

I have had CFS for 19 years, which started at a time that I had EBV and CMV. I managed to work until about 2 years ago and I just couldn't continue. (I had a horrible flare because of doing too much and was never able to recover.) I have filed for disability and was turned down. I'm currently waiting for a hearing.

I lurk here a lot when I feel my worst. I read and don't understand half of what is being posted due to brain fog and lack of a science knowledge.

I am currently feeling really rough. I don't take any supplements right now because money is tight and no matter what i tried, it didn't seem to make a noticeable difference. Currently the only RX meds I take are Armour thyroid and BP meds.

So my questions are is there anything that actually helps the hideous fatigue and PEM? Do you have any tips for getting out of a crash? And how do you quit wanting to accomplish something? In other words, I still struggle with being unable to work and the loss of quality of life.

I have had periods during the last 2 years since I quit my job where I've been able to do things that I hadn't been able to do for a long time (go out to eat with my husband and friends, etc) but I'm in a flare right now and completely miserable. Really, one of my biggest struggles right now is accepting my illness and what it's stolen of my dreams for myself and my family. I've worked so hard my entire life and this illness has robbed me of so much. I am usually a very positive person and right now I just feel like a toddler wanting to throw a temper tantrum, who needs to go to bed and take a very long nap.

 

[*GG*]

Welcome to the forum. I have not worked in 2 years now as well. I did not quit though, I was shown the door. I am happier now, better quality of life. Not working, just to work, and was not getting anywhere anyways! Sucked seeing less talented people than myself getting promoted, I was singled out due to my illness I believe, and for filing grievances, it was a Union environment, but was not helpful for me!

GG

PS I had a crash in 2009, I rested a lot, took the summer off, I was/still exercise with this illness, but I have slowly ramped up my activity over the years, and every spring with my bike. Except for 2010, I did not exercise at all, and gained a ton of weight!

 

[minkeygirl]

We've all lost a lot. It sux.

Do 50% of what you think you can do. Don't wait until you get tired to stop.

Take long breaks between doing stuff.

You have to figure out what works for you but the thing we all know helps is rest and pacing.

 

[Effi]

Hi @Cshell
welcome to PR!

So my questions are is there anything that actually helps the hideous fatigue and PEM? Do you have any tips for getting out of a crash?

I think resting is one of the most important things we can do, however hard that is sometimes. Pacing is also good, but it takes some time to understand how far you can go. (e.g. for me personally it took me a while to understand that concentrating on anything is at least, if not more, exhausting than physical exertion.) Be kind to yourself and give yourself time.

And how do you quit wanting to accomplish something? In other words, I still struggle with being unable to work and the loss of quality of life.

This also takes time. Once you get the hang of pacing, you might be able to find some non-exhausting activities (i.e. staying within your energy envelope) that give you a sense of purpose. There's a couple of threads about that with some good suggestions.

right now I just feel like a toddler wanting to throw a temper tantrum, who needs to go to bed and take a very long nap.

I love this analogy!

 

[worldbackwards]

I read and don't understand half of what is being posted due to brain fog and lack of a science knowledge.

I suspect everyone feels like that. I've long been of the opinion that it doesn't matter very much.

So my questions are is there anything that actually helps the hideous fatigue and PEM?

I find Herbal Medicine and Acupuncture really help. The latter is expensive, the former quite cheap (and probably more effective). Others will disagree. Rather than make things go away wholesale, they allow me to get symptoms under control and keep things stable so I can move activity forward. I'm getting there. None of anything will help if you don't manage yourself properly though - pacing, rest, don't do things you're not well enough to do.

Do you have any tips for getting out of a crash?

The obvious, I suppose: rest until the worst has gone off, then try and get back to a level of activity you can keep up. If you keep getting worse you'll have to cut back what you're doing. Prosaic but true.

And how do you quit wanting to accomplish something? In other words, I still struggle with being unable to work and the loss of quality of life.

That takes time. I remember about four years of rage, followed by a long period of reasonably placid (though not contented) fatalism. It gets easier if you learn to cope with the illness better (or if it simply isn't getting any worse).

If things are severe, it gets beaten out of you to some extent; things are so difficult and unpleasurable if you actually do them that you don't really want to anymore. That doesn't mean you don't want to do things, you just accept that you can't. On the other hand, if you're improving, your cup runneth over at the prospect of being able to listen to the radio.

I am usually a very positive person and right now I just feel like a toddler wanting to throw a temper tantrum, who needs to go to bed and take a very long nap.

I've had tantrums, I've thrown stuff about, screamed into pillows, screamed at people who didn't deserve it. It's not your fault, it's just the burden you have to carry. Just do your best; it's a tough business and it's more than anyone should ever be expected to cope with. At this point I don't think anyone's going to jump on you for being negative.

 

[Strawberry]

So my questions are is there anything that actually helps the hideous fatigue and PEM? Do you have any tips for getting out of a crash? And how do you quit wanting to accomplish something? In other words, I still struggle with being unable to work and the loss of quality of life.

Welcome to the forum! I do still work after 20 years of illness, but that leaves me with nothing left at the end of the day or weekends. I also was a single parent, so felt I had no choice and I made myself worse. This place is a gold mine of ideas on improving, even if just marginally.

My word of advice is if you clean house at all, find other ways to accomplish it. I got a robot vacuum which completely eliminated my need for vacuuming and sweeping (there is a thread here somewhere). It doesn't get done as often as I would like as it still takes energy to pick up the cat toys (and leaves dirt in the corners), but I sit on the couch and rest and feel proud that my floor is clean. I am contemplating getting one to mop the kitchen.

There are many threads here talking about how to get nutritious food with little energy, and how to clean.

I am usually a very positive person and right now I just feel like a toddler wanting to throw a temper tantrum, who needs to go to bed and take a very long nap.

So do take a nap. It probably is exactly what you need.

Don't knock yourself for being sick, consider this healing time.

 

[Cshell]

Thanks everyone for encouraging me to do what I know I need to do, which is just give in and rest more. I know mentally I get in a worse place when I'm doing too much. I did better at spending time flat on my back in bed doing light, mindless reading or watching TV when I first had to quit my job. I feel like I was coping better then than I am now for some reason.

 

[Woolie]

Hi @Cshell, so sad to hear your story, one of so many I've heard here on this forum. Do you have a good doctor? By that, I mean, one who believes you, who is willing to try things out and monitor your health through it all? Not sure what you financial situation is there, but it does make a whole world of difference.

Some people here have had success with antivirals (valtrex or valcyte, usually), but they're expensive. I've heard a lot of success stories with LDN (low dose naltrexone), which is very cheap. Not a complete recovery, but significant improvement in quality of life. After a long period bedbound, I got relief with prednisone, which is also cheap (its an immune suppressant, it eases that flu-like stuff and crushing fatigue, effect is quick and dramatic). Its not without it risks and side effects, you would need to talk to your doctor and weigh it up carefully.

Try typing some of these medication names into the search bar on the main PR page (not the forum pages, the main page, you get more hits that way).

Hope this forum is a good place for you to let off some steam - we've all been there, the frustration, the fury. And then the rage when you end up feeling worse after having a tantrum - how unfair is that!

 

[Cshell]

Well, the day of my post, I developed blisters in my throat. Every time I have an infection (or is it a viral reactivation?) I feel over emotional. I should know by now that when I could cry at the drop of a hat that something is coming on. Also, I should be smart enough to not overdo it at this point. My apologies to everyone who read my whinefest. Most days I know that I am blessed to not be working, have a husband who is mostly supportive, and have the activity level I do.

Also, if I can do a little confession here, I managed to keep going at work for years by taking Phentermine and other stimulants. The Dr gave it to me when I first became ill because he thought the extra weight I was carrying might be playing into the fatigue. I had serious issues from taking Ritalin (in an effort to get off of Phentermine), so I swore off of all stimulants. Well, a few months ago I started taking Phentermine again because I had some things I desperately needed (wanted) to do and was feeling horrible. Plus I had gained about 30 lbs so the weight loss is a wonderful side effect. I know that it allowed me to do more than I should and put me in a bigger hole, but I like my life so much better when I can do a few things that I normally wouldn't be able to do (that are desperately important to me like helping my daughter during a difficult time). So in a nutshell, I did this to myself but for people and activities that makes my life worth living.

@Woolie my Dr is supportive and tries a lot of things I ask about, but is pretty mainstream. Financially, we are making it but it's hard. Even though we were downsizing and preparing for me to be unable to work, it came about 2 years quicker than I wanted. I have never tried LDN, and only one of the cheaper antivirals. I will check into those. I have a prescription for prednisone that the Dr gave me but I'm not sure it's worth it.

@worldbackwards What type of herbal medicine in particular? I don't even know of any acupuncturists near me but would try anything when finances are better.

 

[worldbackwards]

@worldbackwards What type of herbal medicine in particular? I don't even know of any acupuncturists near me but would try anything when finances are better.

In my experience, it is best to have consultations with a qualified herbalist, who will then make up a prescription based on your own particular symptoms - herbalism tends to offer tailored remedies for different people. Doing it yourself doesn't usually do much good.

I know of other people who've found herbal medicine work for them, others who found it useless - as with anything there are no guarantees. It's best to find a registered practitioner as, with most things, there are quacks who don't know what they're doing (or, more worryingly, the ones who do - taking your money). I get the feeling that you're in the US? I understand @JaimeS knows about herbal medicine, so perhaps she could point you in the right direction as regards what to look for.

 

[JaimeS]

Well, hello @worldbackwards , @Cshell

There are adaptogens and immunomodulators which would be best for people in our situation. We over-react to them in the same way we over-react to everything, however, so whatever Registered Herbalist you find - and in the US that is what you want to look for, my MS program is still very tiny and it's atypical for an herbalist to be able to get one in their field - you would want to be sure that they really understood that.

It is common even for experienced herbalists to go for the whole Appeal to Nature thing - that what is natural must be safe - even if it's subconscious. Don't get me wrong, they are well aware that there are poisonous herbs, but they view the adaptogens as generally safe, take-as-much-as-you-like/need kinds of herbs. And usually they are.

@worldbackwards is right about the individualized technique; one of the pros of going to an experienced herbalist is that they don't do rubber-stamp scrips. They will look at your symptoms, body type/genetics, and formulate something unique and tailored to you. It's hard to say that for other modalities. Even Chinese medicine has specific 'formulas' that many practitioners consider to be set in stone. Western is more 'freestyle' if that makes any sense.

Feel free to PM me and tell me where you are generally in the US. I can recommend some reputable people.

-J

 

[Cshell]

Well, hello @worldbackwards , @Cshell

There are adaptogens and immunomodulators which would be best for people in our situation. We over-react to them in the same way we over-react to everything, however, so whatever Registered Herbalist you find - and in the US that is what you want to look for, my MS program is still very tiny and it's atypical for an herbalist to be able to get one in their field - you would want to be sure that they really understood that.

It is common even for experienced herbalists to go for the whole Appeal to Nature thing - that what is natural must be safe - even if it's subconscious. Don't get me wrong, they are well aware that there are poisonous herbs, but they view the adaptogens as generally safe, take-as-much-as-you-like/need kinds of herbs. And usually they are.

@worldbackwards is right about the individualized technique; one of

@worldbackwards Thanks for the info and pointing me toward @JaimeS! I will contact her.