The See Saw known as CFS...do you have this?

[Misfit Toy]

So, there are days where I literally feel like I am going to die. I am so exhausted, in pain, everything. Plus, my mood is just atrocious. I can make sense of nothing. I lay in bed like a lump of dust and freak out my friends because I sound so on the verge and desperate. My throat hurts, my glands hurt;.....I am going to die! I slept maybe 3 or 4 hours the night before.

Then, that night I will sleep like 8 or 9 hours due to the fact that I didn't sleep the night before. The next day, I am like a different person. The aches are less, the pain, my mood is sunny and bright! I feel great and start planning for the future. I am excited! I am out and about and I am talking to my friends, totally forgetting the day before (not really, but trying) and talking about how I am going to plan a trip. Everyone is scratching their head. To be honest with you, I am too!

Does anyone else have this? I am disabled with CFS. I can't work full time and never know when I can do anything. But one of the worst things about this is the extreme shifts in both physical illness and how it affects me mentally.

If I didn't know me, I would think that there was something wrong with me psychiatricaly. I went to a shrink for 3 years...and I used to beg him, "Tell me, tell me if you think I am bipolar!" He would laugh and say "NO. You are not, you are sick." I don't have mania. I don't have suicidal obsessive thinking, but these shifts are crazy making.

Just wanted to see what ya'll thought!

 

[Misfit Toy]

28 people have read this and no one has ever had ups and downs where they feel horrible and in bed one day and out and about the next? I have CFS, I have low WBC, I have fibromyalgia, I have interstitial cystitis and endometriosis, I am not nuts. My EBC is high. I have mycoplasma. If that is what people think when they read this...that is not the case.

 

[Esther12]

Got nothing to say really - but didn't want you to get paranoid about people viewing and not replying!

I don't have this. I'd advise trying to move towards maintaining a steady level of activity, but this sort of see-saw thing is not something I've had to deal with. Maybe it's better to have some good days, rather than all a bit tired days?

 

[Tom]

Then, that night I will sleep like 8 or 9 hours due to the fact that I didn't sleep the night before. The next day, I am like a different person. The aches are less, the pain, my mood is sunny and bright! I feel great and start planning for the future. I am excited! I am out and about and I am talking to my friends, totally forgetting the day before (not really, but trying) and talking about how I am going to plan a trip. Everyone is scratching their head. To be honest with you, I am too

Hello Spitfire,
There's a clue in your para above " I'm exited" "etc"
When you feel good like this it's quite often best to have a do nothing day, then there is less likelyhood of the next day being an " I feel dead day".
It's a kind of pacing that's required, so do less when you're good and gradually the bad days will go-hopefully.

 

[Carrigon]

Alot of us have that. I can be so sick I feel like I'm ready to die, and then that afternoon or night, I'm suddenly better. Or I can have one very odd day where I feel pretty good, but it never lasts. The next day, I'm down sick again. It's just a part of having this. No one knows why. But that's why we can't work or plan for anything because we never know how we're going to be.

 

[gracenote]

Spitfire,

You described really well what I've dealt with for years. I have worked very hard not to have such extremes when possible. Here are some thoughts.

Activity. On the days I'm feeling better, I try not to increase my activity level if at all possible. It is sometimes difficult to control as I still need to take care of basics like bills and food, and all the things that didn't get done during a crash. I've had to nearly cut out all social events, even having people visit, because it will cause such extreme symptoms in the following days. Because I live alone, and don't have many people I can call on for help, I can't afford crashes if they can be avoided. When my children were still at home, there was much I couldn't control.

Sleep. I work really hard to keep my sleep as consistent as possible, and that means taking drugs.

Food and water. I make sure I don't go too long between meals and snacks and I don't let myself get dehydrated.

Good days. I appreciate having less intense symptoms. I try not to conclude that now I can pick up where I left off. I use the extra energy doing the same things as when I'm crashed, but now I'm able to take a little pleasure in my surroundings. Before, I would have gone out to do any number of things (so tired of being house-bound!), but now I may just go outside my own house, look at (and hug) my trees, sit on my porch for a few minutes, make a phone call to a friend, take a shower and get dressed (probably not in that order). Very simple things. I'm still isolated and often bored, but my quality of life improves so much.

Feelings of hope. When I have those incredible feelings of "anything is possible," I thank the universe for them (because it seems to mean that something in me has not permanently broken), and I don't believe them entirely. They can lead me to do foolish things and make unrealistic plans which later disappoint.

Crashes. Crashes send me into an emotional tailspin. By doing less, I can be present with myself. I continually have to deal with the grief that all these restrictions place on my life, but I can also find a place of acceptance and thus an appreciation for what I actually do have.

Weather. One very unavoidable circumstance that increases all my symptoms and leads to crashes is changes in the seasons and weather. I tank when the barometric pressure is low. Molds send my emotions tumbling. Pollens make me ache all over. Unless I choose to move to the desert (as my doctor suggests), I have to live with this impact on my coping ability. By knowing that these things add an incredible stress to my body, I can work with them and plan accordingly.

Depression. I in no way think my illness is psychological. That being said, crashes very much bring on depression and feelings of despair. And pain and suffering. I avoid these as much as possible.

Art. I've been practicing the Art of gracenote-Body Maintenance for a very long time. Or I could call it the Art of Living Well With a Chronic Illness. I get to practice every single day.

Spitfire, I hope this helps. I didn't respond earlier because I knew I would get lengthy in my answer and, like most of us, this tires me. But look what happened when you asked a second time.

 

[Lesley]

I have had similar experiences, although my highs and lows aren't as drastic. What I have found is that I have to do less than I feel like I can on the good days, and then there are fewer, or at least less severe, bad days. It's a hard thing to do, because we so desperately want to do so many things. Over time, I think you can do more by evening out your activity.

 

[Misfit Toy]

THANK YOU! I agree with all above. On the days I feel good, I need to take it easy. It's so hard, as many know, because this disease is so isolating. I like some form of contact and not always by phone. But you are all right.
I know I really can overdo sometimes. I guess it's just 21 years of being pent up. I never got to do things that people in their 20's do, like drink, parties, marry, children; so when I have a good day, I spend all the physical dollars I have been given, and am beat the next several days.

I feel best at night and wish I could live then, instead of during the day. I have more energy. I hyperventilate during the day, showing me that my adrenals are low and then at night, it goes away.

 

[Carrigon]

I was always better at night. I used to wish it would stay night all the time. Sometimes, I still wish for it.

 

[kerrilyn]

My symptoms can vary a lot from day to day. Before I tried/understood to pace my activities I was on a real roller-coaster ride of push and crash. I'm better with that now, but even still I can have a day were I feel like I'm dying and in lots of pain the next I can have a lot of energy with very little pain. A huge factor with that is how I've slept. But also the weather, and I think hormonal fluctuations play a big role for me. I'm always better in the evening/night too.

I've also found that my general symptoms follow a pattern of seasonal changes too. In the fall: I'm exhausted with less pain (I sleep a lot), winter: I'm depressed in December and then Jan-Feb I'm wired (can't sleep) and pain increases a lot, spring: I go into a remission and feel great (almost normal - and really have to resist overdoing it), summer: OI symptoms increase, fatigue and pain again come back. I'm not sure why exactly but it's gone on for years like that. I think different co-existing conditions come to the surface and other subside at certain times of the year.

 

[hensue]

I always feel better at night and so do my grown boys. There wives get so mad! It feels like we kick in to gear around 3pm. I see saw like you do Spit but just like the others said.
I have to watch the good days if I overdo then I pay. Then I had one day I went to the zoo and walked for hours up and down hills. Thought for sure I would be ill in bed in about 24 hours.
I do not know what happened but I never got sick from it. I can go outside now and walk half a mile and be hurting and in bed in about 24 hours.
This illness in itself can drive you crazy. I will say one thing for me. When it is extremely cold like it has been I really hurt and was so fatigued. Sorry, but we have had some really warm days lately and sunshine. I feel awesome except some horrible headaches I have started having the last couple of weeks.
winter for me is bad.

 

[starryeyes]

I have ups and downs and pacing only works so well. I have to pace or I'm even worse but I still do feel like I'm dying and then feel good, only now that this has been going on for at least 25 years I mostly feel bad to worst and the good only lasts for min. to an hour or so and that's a good day.

 

[Sunday]

I've learned a lot about pacing from this thread, and I need to. I too have the feel great/feel horrible syndrome, and I'm pretty sure I can chalk that up to pushing the limits when I feel better, instead of taking it easy. Sometimes I think it's worth it to have a blowout: last week I subbed as a DJ for a radio show and went out to dinner and a concert, plus did a lot of housecleaning. I just get so tired of not doing anything, which at least means I have got well enough to want to. But when I think about it, getting out of the push/crash dynamic is significant for more than just my physical health. Our whole culture is into push/crash and I feel it's badly destructive. Maybe it's good that I have to learn not to participate in that, to find another way to deal with the time and energy allotted me.

 

[realjoy]

THANK YOU! I agree with all above. On the days I feel good, I need to take it easy. It's so hard, as many know, because this disease is so isolating. I like some form of contact and not always by phone. But you are all right.
I know I really can overdo sometimes. I guess it's just 21 years of being pent up. I never got to do things that people in their 20's do, like drink, parties, marry, children; so when I have a good day, I spend all the physical dollars I have been given, and am beat the next several days.

I feel best at night and wish I could live then, instead of during the day. I have more energy. I hyperventilate during the day, showing me that my adrenals are low and then at night, it goes away.

Have you been on any treatment for the adrenal issues? I had BAD adrenal fatigue for years, and we were successfully treating it back in 07-08. I was feeling better and my pain & energy were getting better. Then I quit smoking (I know, I know...awful!) and they nearly stopped functioning. Since then, my CFIDS and FM have been horrific! I have worse symptoms now than before, including worsening cognitive things. We are trying to heal them now, but it's a slow process which requires one be asleep by no later than 10 or 11 pm. HA! How does a CFS/FM person do that??? Anyway, I just thought I would mention it in case you haven't worked on them yet. In some people it really does help some symptoms.

 

[Scarlett]

I know exactly what you mean Spitfire, I also have this but my days tend to come in clusters of four or five OK and then four or five bad. I've found that my general condition seems to improve and go downhill pretty drastically over the months, with the day-to-day thing continuing all the time. I hope that makes sense: Like, when I'm not too bad I will still have good days and bad days but they will be milder; when I'm really ill the bad days are bed/sofa bound and the good days I can walk 5mins to the shop and then have a lie down. I've been ill for two years with ME / CFS and I have yet to put my finger on what causes the crashes.

I totally understand about what you mean about questioning yourself - when I'm really bad for weeks and weeks I think, "Am I just wallowing? Is this something I am perpetuating and I should snap out of it?" but then one morning I will wake up and feel OK and cheery, thinking of the things I want to do, I have motivation again, and I remember that it is most definitely real.

 

[Carrigon]

When I don't pace enough and spread out imporant things, I end up so sick like I am now that I'm unable to do a thing. Unfortunately, we don't always get to space things out. I always try to judge when to make an appointment and give myself alot of time to just rest for days. When I do that, I can still flare if I'm nervous about it or stressed, but it's better if I have days to rest up and days to recover.

 

[cherlyn]

I'm new to this group - have two kids (teens) with POTS / CFS - one has had some significant gradual improvement over time and one who is continuing to struggle to a debilitating degree. It is an incredibly frustrating roller-coaster ride and I'm sure all here know all too well about that!

Spitfire, I know exactly what you're talking about. I see this very much so in both my kids and especially my son. However, it is not just one day to the next - it can literally change one hour to the next. He can be having a really decent day, relatively speaking, and he will suddenly sit or lie down wherever he is, on the floor, bed, wherever, and say "I am sooooo tired!!!" He goes from doing good to awful - can be as quickly as turning a switch. It is an amazing process to observe. It is very obvious from looking at him that he is overwhelmingly exhausted. It may last an hour or so, many hours, or longer. It can also be almost as dramatic in the other direction. He can be feeling really bad and then will suddenly begin to perk up. In the earlier stages, as a parent I would wonder what on earth was going on. I questioned it in my mind. However, a lot of time and observation has shown me that it is very real indeed. There are other times when he can have an active day and or rarely maybe a couple of days and then the crash hits. It's all over the place and it can be very tough to make any plans ahead of time!

The suddenness of the fatigue made a big impression on my Mom when we were there for a visit last summer. Son had had an overall pretty active day and he was outside in the late afternoon when that sudden fatigue hit him. When it hits him like that he sits or lies down wherever he is, and he laid down on the sidewalk in front of Mom's house in total misery from the fatigue. Mom has always been understanding about this stuff, but that really made an impression on her. She still talks about how amazing it was to see that.

Hensue, both my kids, like you, feel better at night - late evening. Often even on an otherwise bad day, son will perk up for a while in the late evening. He also has limited appetite and it is at night that he has more desire to eat.

Hopefully one day the mysteries will be unlocked!

 

[citybug]

I definitely have this, feeling like I'm going to die a lot. I'm terrible at pacing. Mostly because energy envelope is too small to stay in.
I used to have days when I had more energy and it felt like an imperative to use it. I couldn't physically resist using it up.
Lately I've felt so bad driven to visit doctors, acupuncture to do something before unable to take care of myself.
In past years I realized that a relapse made me depressed, so then I could notice, oh I'm relapsing.
Now I have symptoms that feel scary like not being able to breathe (previously only on very bad days during activity) and legs vibrating and feeling terrible even lying down. Still tempted to make plans if not happening at the moment!
I thought maybe this was from having it many years.
Would anyone be interested in an online therapy group, for those times, maybe in lounge or a group with privacy like New Day? A lot of the group things are for fun, but what about when you feel really bad?

 

[kat0465]

I feel best at night and wish I could live then, instead of during the day. I have more energy. I hyperventilate during the day, showing me that my adrenals are low and then at night, it goes away


spitfire,
i know everything your saying, especially the nitetime thing.i feel my best at Night. i think it's because my cortisol is nonexistent during the day then it spikes a little at night, when it should be lower.but i never
have good days that last i get a few hours at night of feeling almost Human, then i go to bed & wake up and feel like i was at a frat Party!!! it's wierd, frustrating, and sad to say the least....
you are definately Not alone!! im still hoping by this time next year, we will all be on the road to some kind of recovery!
Kat

 

[Sallysblooms]

Gracenote, thank you for what you said. Yesterday was decent. Today is awful and I am so sad about it. Up and down....17 years. Angel of a hubby and family thank goodness. He has had to push me in a wheelchar for a year now. He does all of the housework, HIS busy job AND now does all of the gardening. I used to have beautiful gardens, even with the CFS a few years ago. Now we have landscapers and my hubby. He just planted tons of flowers for me today.

Things really tanked further one year ago. I am trying to "climb out" and at least walk better soon. I am glad I found this site.