When pacing doesn't work..

[soxfan]

Pacing simply doesn't work for me...I can get up in the morning...feeling totally unrefreshed. Have some breakfast...take a shower and by then start to feel very fatigued.

Sometimes I am already laying down by 11 am which does me no good but I am too tired not to . I can do nothing at all and suddenly become very tired. It doesn't help me to rest up if I am going to do an activity later in the day because resting actually makes me feel worse. My body feels like it is on high alert constantly.

Everyday it seems to be different feeling...sometimes I can go out and do a few errands...or take a walk...do chores and some days I can't even leave the house. I just have to lay with my eyes closed..no reading etc...

There are many days when the farifue feels different too...I normally sleep quite well but the fatigue during the day never seems to feel the same...

I have been taking supplements to support my adrenals now for five weeks and I feel no different...I can't blame the fatigue on my sleep as it is the best it has been in years.

Just so frustrated that I am spending another useless day laying in a dark room because I am so tired I have no choice.

 

[Valentijn]

@soxfan - Showers are really rough. I used to take baths every day, but now it's a shower on a shower stool every 5-7 days.

Have you tried using a heart rate monitor to help with pacing?

 

[minkeygirl]

I sit on the shower floor. I am looking for a terry cloth cape so I don't have to fuss with putting my arms in it. For now I drape my robe over my shoulders.

I also shower at night so I don't have to dry off completely and can just get into bed damp.

I shower when I smell so bad I can't stand myself. It helps that I live alone. Lol

 

[SDSue]

So sorry to hear of your struggle. It sounds awfully familiar, so I’ll share what has worked for me. Of course, we are all so very different.

Firstly, I know my adrenals are “off” - I have zero cortisol in the am, with a peak not until around 2 pm. Thus, I literally don’t even try to get out of bed til noonish even if I’m awake. I’ve tried getting up earlier, but it ends with me back in bed all day.

Secondly, I agree with @Valentijn. I miss being clean, but I only shower about once a week, too. With my dysautonomia issues, I can’t even use a stool. Instead, I use the shower in the spare bath that has a bathtub and I sit in the tub. I also work the shampoo into the roots of my hair before I get into the tub so I don’t have to have my arms over my head while in that warm environment. I just sort of let the water run over my head so it washes and rinses at the same time.

Just that type of “shower” alone wipes me out, so it’s my only activity of the day, and I do it in the evening then crawl straight into bed. This is one helluva disease - I don’t want to know how many standards I have left to lower.

I see in your profile that you are an activity level around 6. If that’s still true, I would encourage you to let some things go now so you don’t risk further damage. I sure wish I’d have done so - but it runs against human nature to do less than we are able to do. Best of luck to you!

 

[Seven7]

@soxfan are you on any autonomic medicine: Midodrine, betablocker or Florinef??? for me, pacing would not work without this either when my OI got too bad. My issue was being vertical period even if it was just sitting, I was unable to.
Note: I was not deconditioned since next day I could move around. Now I can pace w meds. But still have days (before my period) where no matter what I have to lay down because I get too orthostatic (inability to stay vertical, sleep is harder, abnormally cold feet, mottling....)

 

[soxfan]

I am not on any medications except for my thyroid. I was tested for OI a few years back and was told I didn't have it. I take cool showers only because I don't like hot water so am not sure it has anything to do with that. I don't get this everyday but have been having major problems recently.

The fatigue seems more to be coming from my head...it feels heavy and my eyes feel on fire. Physically my body does not feel tired or exhausted. I am going through another major move in 19 months so am wondering if it's stress related.

Some mornings after I shower I am fine...

Resting is of no use to me at all....it actually makes me feel so much worse.

I am seeing doctor next month so will have a discussion again about this. I want to add I was on Florinef for a short period of time 4 years ago but it didn't seem to make a difference so the doctor had me discontinue it.

 

[Dr.Patient]

Pacing simply doesn't work for me...I can get up in the morning...feeling totally unrefreshed. Have some breakfast...take a shower and by then start to feel very fatigued.

Sometimes I am already laying down by 11 am which does me no good but I am too tired not to . I can do nothing at all and suddenly become very tired. It doesn't help me to rest up if I am going to do an activity later in the day because resting actually makes me feel worse. My body feels like it is on high alert constantly.

Everyday it seems to be different feeling...sometimes I can go out and do a few errands...or take a walk...do chores and some days I can't even leave the house. I just have to lay with my eyes closed..no reading etc...

There are many days when the farifue feels different too...I normally sleep quite well but the fatigue during the day never seems to feel the same...

I have been taking supplements to support my adrenals now for five weeks and I feel no different...I can't blame the fatigue on my sleep as it is the best it has been in years.

Just so frustrated that I am spending another useless day laying in a dark room because I am so tired I have no choice.

Cut out showers completely. Use sponge baths as tolerated, once a week? Showers are what landed me in my horrible relapse. Try a clear liquid breakfast- any thing we do to our autonomic nervous system is going to make us worse. Give it easy to digest, no solid food for a day or two periodically. Or eat dinners if you feel better around night time.

 

[soxfan]

We have a built in bench in our shower so tomorrow I am going to sit on that and shower and wash my hair just to see if that makes a difference..this is a new problem for me as I really didn't have any issues prior to the last few weeks...

 

[SOC]

I want to add I was on Florinef for a short period of time 4 years ago but it didn't seem to make a difference so the doctor had me discontinue it.

FWIW, I didn't notice much difference until I got Florinef and verapamil (for tachy) together. Either one alone didn't make me feel better, but together they made a noticeable difference.

We have a built in bench in our shower so tomorrow I am going to sit on that and shower and wash my hair just to see if that makes a difference..

Also consider washing your hair by hanging your head down to soap and rinse. The arms above the heart thing can definitely be a problem with OI. Washing hair can be one of the biggest shower problems along with standing too long and heat causing vasodilation.

 

[AndyPandy]

For me, showers are a major energy thief, even when using a shower chair. Like others, I have had to lower my standards and shower infrequently. Same with hair washing. I am always fatigued, short of breath and my heart rate is up after a shower. But I smell better and feel nice and clean - well at least on that day

Best wishes, Andy

 

[rahmama]

Just so frustrated that I am spending another useless day laying in a dark room because I am so tired I have no choice.

I feel your pain @soxfan Reading your post made me realize that I felt just like this in the beginning (4 years ago). Unrefreshing sleep; resting makes it worse but you can't walk into the kitchen to get a drink because it seems soooo far away. Every day is different and it really sucks not knowing when you're body is going to let you down.

I've been keeping a journal for these past four years, trying to find the clue to my crashes. Noting all the different things I experimented with. The interesting part is that even though I'm still dealing with it every day, I'm gradually getting better. I recover from my crashes more quickly even though it's still a weekly occurrence. I don't think I'd realize it as well if I hadn't kept track.

Stress plays a huge part in this. I was going through dental reconstructive surgery about two years into CF. I really didn't see it at the time but looking back I can see how that added a lot to my stress and my symptoms. I think we're good at denying how things are affecting us.
I just wonder how my body got so out of whack! Anyway, just wanted to encourage you that it does get better.

 

[Vic]

I also shower at night so I don't have to dry off completely and can just get into bed damp.

I think that's not a good idea. Going to be wet can allow mold and bacteria to grow at a greater rate.

 

[soxfan]

@rahmama I am 11 years into this and feel as though I am definitely getting worse. I used to only crash once or twice a year. I never had problems in the shower...I was able to keep physically active.
I also feel my anxiety has increased over the years due to the illness. I am fairly certain that at least half my fatigue is due to chronic anxiety.

My doctors don't feel as though I have OI so I won't be getting any medication for that. I had the tilt test and wore a holter monitor for 24 hours back in 2012.

Thanks for everyone's thoughts on this.

 

[SOC]

My doctors don't feel as though I have OI so I won't be getting any medication for that. I had the tilt test and wore a holter monitor for 24 hours back in 2012.

I didn't have OI at first either, and passed a TTT. The OI developed later in the illness. You could ask for a new TTT. Also some docs will prescribe the meds based on symptoms since the OI could be atypical in some way -- delayed, occurring during non-office type conditions (heat, first thing in the morning).

If your fatigue is due to chronic anxiety, anxiety meds might help. Another thing to consider is that sometimes increasing tachycardia, a sign of OI, can be interpreted as anxiety. It might be that OI and consequent tachy have been increasing over the years and that your mind is interpreting the pounding heart as anxiety.

 

[Seven7]

@rahmama I am 11 years into this and feel as though I am definitely getting worse. I used to only crash once or twice a year. I never had problems in the shower...I was able to keep physically active.
I also feel my anxiety has increased over the years due to the illness. I am fairly certain that at least half my fatigue is due to chronic anxiety.

My doctors don't feel as though I have OI so I won't be getting any medication for that. I had the tilt test and wore a holter monitor for 24 hours back in 2012.

Thanks for everyone's thoughts on this.

I put my money down on OI, since you described your symptoms I recognized them. But does not mean that your type is POTs could be some other type of dysautinomia. Go to diner.org. check your hear rate yourself when you get that head feeling ( which I only know to well) monitor BP also and keep a look before you see your doctor. Ask him to get you to Try a low dose vasocontriction drug and see how it feels Like+ Florinef. If HR is too high then ask for beta blocker.

The vassoconstriction drug is short lived only 4h ask him for a try ( I had to convince my dr becuAse my first tilt was not conclusive). He can give u a try of 3 days! What do you loose?!

 

[soxfan]

All great thoughts....I have my notebook ready to discuss all these issues with the doctor. I am actually going to see a new PCP who is supposed to be really good. I am sure he will want to do his own testing since I am still having problems after all these years.

I am not sure I have chronic anxiety but when I read articles describing the symptoms and fatigue it sure sounds like me...I take .025 of klonopin at night to sleep but I don't think it's enough to calm my body down as it is always wired 24/7 and I don't want to take more if it isn't truly anxiety...

 

[rahmama]

Greetings @soxfan
I'm sure you've tried a jillion things over the years and I'm glad to hear you've found a good doctor to go to. I just wonder if you've looked into a possible magnesium deficiency. I recently started taking something called Natural Calm by Natural Vitality http://naturalvitality.com/natural-calm/

Among the many symptoms that insufficient magnesium can cause is nervousness, anxiety and irritability. I have been amazed at the results I've felt from taking this. It's in a powder form and is easily digestible. Goes to work right away.

I opted to try it for muscle tension and cramps in my legs and found it not only relieved the pain, but calmed me in ways I'd never felt. I take it before bed now -- to aid in a good night's sleep.

From what I understand, many people have a magnesium deficiency and taking a supplement is pretty safe. According to the directions, "during times of stress or heavy physical activity your body may need more Natural Calm. When bowels are comfortably loose, this is a good gauge of the optimal amount." Another one of its many benefits.

The above link has a pretty interesting description of what occurs on a cellular level and the imbalance created by a magnesium deficiency. Hope this helps.

 

[soxfan]

@rahmama ...I actually just ordered some magnesium online since I couldn't find the kind I wanted in the store. It is magnesium glycinate which is one of the kinds that is very absorbable. I had been taking a brand from the pharmacy but read it is one of the hardest to absorb so was probably doing nothing for me.

I really still think I probably still have a lot of anxiety going on too with packing and moving. But I will say I have felt wired and tired for about five years now constantly..with chronic never ending tiredness or exhaustion. Thanks for the info on the magnesium.

I am on Adrecore for my adrenals and a bunch of other supplements for stress support.

 

[Catjbro]

@

I really still think I probably still have a lot of anxiety going on too with packing and moving. But I will say I have felt wired and tired for about five years now constantly..with chronic never ending tiredness or exhaustion. Thanks for the info on the magnesium.

I am on Adrecore for my adrenals and a bunch of other supplements for stress support.

I know this is old thread but wanted to see how you feel now. I too have adrenal issues and feel wired and tired and anxious.
Cathy

 

[soxfan]

@cathy...sorry it took so long to reply. I have moved twice in the past year so haven't been on here much. I am still struggling with wired/tired but I can say that it is mostly from mental or social exertion which includes shopping...talking on phone...social gatherings...or just conversations. I have come to my own conclusion that my body specifically my adrenals are totally dysfunctional .

They are pumping out hormones randomly and don't know when to stop. I can sit and do nothing all day and by afternoon I will still get the wired but tired. My body feels like adrenaline is just coursing non stop and can't calm down. It is almost never my mind even though it could easily have started there.

I have been on Cortef in the past which really didn't help with the "wired" problems. I can do almost anything physical without getting PEM or the wired feeling.

It is still a daily struggle...one that I feel I will have for the rest of my life. My body is so dysfunctional I don't believe it will ever right itself. I take nothing now since it never helped. I just do the best I can everyday....

I also feel the anxiety stems from the illness and the fact that I can't live the life I once had...and the unknown each day of how I am going to feel...can't make plans or might have to cancel plans..