Tired, Tired, And More Tired!!

[Brye]

This is my worst symptom right now I think. I'm just dragging all the time. My HR's seem fairly well controlled but I'm so darn tired all the time!! I"m trying to increase my activity gradually hoping it'll help in the long run but I'm so exhausted! I nap every chance I get but can never seem to catch up!! I wish my toddlers could lend me some of their energy. Any tips? Go to bed earlier perhaps?

There may not be an answer or cure but I know you all could sympathize anyway!!

Brye

[Kitsakatsa]

There have been two things I've taken that helps: Adderall and Provigil. I couldn't live without Adderall.

Still though, I am exhausted most mornings- I don't know how you can deal with toddler energy!!!

Sympathy!!!

Kits

[erickamcc0523]

I wish I knew... especially since I've been put on metoprolol, I have been even more wiped out than normal. Yes, it's great that my pulse rate is a bit better controlled (fewer chest pains and a little less pressure in my head), but I felt much better before I was put on it. I'm just glad that I have another appointment with my cardiologist tomorrow. I've given the metoprolol a month, and I now think it's time to try something else.

What helps somewhat is making sure that I don't get dehydrated, even slightly, as that will exaserbate any symptoms (especially the exhaustion) and if I'm really, really tired, a cup of half-caf coffee will help somewhat, but I have to be careful about having too much coffee, as I'll literally jump out of my skin. Also, even if I'm having insomnia problems, I'll still lie down, as just resting my body is better than not resting at all.

Here's to hoping that we both have many spoons soon!

Ericka

[lauralulu]

My worst symptom too- here's hoping we all find something that helps!

[firewatcher]

" I"m trying to increase my activity..."

Here is where I suspect your problem. I also tried to increase my activity and found that I had progressively less and less energy! It isn't supposed to work that way, but for me it does. Rest for a week and see if you feel better. Be a guilty, lazy slob (not really ) and see if you don't feel better after that. I found that once I cut back on my activity, my energy increased. We don't live in the "normal" world where the body adapts to increased energy needs by making more muscle or more energy...we live in the world of Dysautonomia, where even standing is exhausting. Perhaps there was some inter-dimensional shift and we feel the gravitational pull of the sun more greatly than everyone else!

No, seriously, take it easy for a while and see if it helps. Exercising once a week is now equal to three days for me. Any more than that and I am just wiped out!

[MomtoGiuliana]

I agree with Firewatcher. If I push too hard I end up with less gain/more exhaustion. In fact I find if I have too much activity I have trouble sleeping well at night too.

[Rachel]

It sounds logical to gradually increase activity. That works for healthy people, but as Firewatcher and Katherine said, it doesn't necessarily work for us. Your body probably has a limit to what it can do each day and still be at baseline. If you push it too far, then it takes time to recover.

Going to bed earlier may help. I often find that I need to go to bed early, but I don't actually need to sleep. I just need to be still and completely horzontal. I try to go to bed at 8pm every night, but I don't usually go to sleep until 4 or 5 hours later. I feel my best if I spend 15-18 hours a day in bed.

Keep trying out different levels of activity and rest until you find one that works best for you. It won't get you feeling normal again, but hopefully it will get you to feeling as good as possible.

Coffee and provigil also help me. I drink a cup of coffee every morning, and sometimes one in the afternoon. Provigil I only take on a day when I especially need it. If I take it daily then I slowly get more tired and more weak.

I hope you can find something that helps you a little. It's hard being a mom with little ones. Hang in there.

Rachel

[Chris]

Hi Brye,

I, too, was tired all the time. I felt like a rag doll, and it took a lot of effort on some days to move my fingers!! My situation improved TONS when I began to walk. This was before my diagnosis, and I just went out and walked. It seemed like on the days I didn't move my fatigue was worse. Now I am productive and I can keep up with my kids. I really hope you can find something that works for you. Good luck.

Chris

[juliegee]

Toddler(S)- no wonder!!!!!

The think that helped the most with my fatigue is turmeric. You can find it at stores like GNC. I felt an immediate boost of great energy AND my cognitive fog lifted. Alas, I was allergic and can't take it any more.... You may want to give it a try. There's loads of research behind it.

Hugs-

Julei

[erikainorlando]

I just want to echo Firewatcher, Katherine, and Rachel. I cannot increase my activity too much...slow is better. Relaxation and rest is thekey to all my ailments! If I push it at all..severe backfire!

I do not seem to build endurance...I know doctors that have told me to keep increasing bit by bit...but it doesn't work for me. I get weaker and weaker if I increase...I don't really get "tired"...I get weak! Not sure if anyone identifies with this one.

Erika

[erickamcc0523]

I just want to echo Firewatcher, Katherine, and Rachel. I cannot increase my activity too much...slow is better. Relaxation and rest is thekey to all my ailments! If I push it at all..severe backfire!

I do not seem to build endurance...I know doctors that have told me to keep increasing bit by bit...but it doesn't work for me. I get weaker and weaker if I increase...I don't really get "tired"...I get weak! Not sure if anyone identifies with this one.

Erika

Seriously identify with the inability to build up endurance. After a few times of trying to build endurance throughout the years by starting an exercise routine (before POTS diagnosis, and even before it was really set off before this surgery in November), after about day 4-5, I got to where it was almost impossible to even hold up my head. Even pushing myself just a little bit too much (for normal people it wouldn't even register with them) will cause a flareup that knocks me on my butt for a few days.

[toddm1960]

I didn't see what meds you were on, but since my mito diagnosis I have learned that beta blockers and statins reduce our bodies levels of CoQ-10 and turn reduce our level of energry and ability to recover from any activity. Exhaustion has always been my primary symptom and most limiting problem. Just one more thing to look at, I hope you start to feel better soon.

[Brye]

Thanks for all your replies! Some good suggestions and I'll look into them all for sure. I think the Beta Blocker (atenolol) has a lot to do with my fatigue as well as the bradycardia it causes. I also have 4 kids and I know that's a big part of it. I had mono this past year as well and that may be back. How would one know due to the chronic fatigue anyway.

It's really hard for me to see exercise as a bad thing since I've always been an athlete. I think it is true that the POTS somehow doesn't allow the body to recover as healthy people would after a work out. I may try to cut back a little and see how that goes. I LOVE the kick back and be a guilty lazy slob idea but I've discussed that one with my kids and that was denied. I have called the Grandparent 911 hotline though and they are coming to visit for 3 weeks. YEAH FOR ME!!! Maybe I can catch up on a bit of sleep!

Thanks to you all, I'll be sure to post if I figure out a cure to the constant fatigue!!!

Brye

[mountain girl]

I am sure it is a challenge to deal with the fatique and young children. I think alot of people with pots have been type A personality or a person to push ourselves alot, but with this I am finding there is a fine line between pushing yourself, and resting and unfortunately it is not the same everyday in that some days I need more rest than others. It made me feel better to read from one of the others that responded to your topic that she feels better if she spends about 15 hours in bed, because on the days I work that is about all I can do so I often end up coming home at 3pm, resting in bed, getting up an hour or so later to shower, heat up something easy for supper around 5 then back to bed. I watch tv and don't go to sleep til 8 or so, but just laying down helps. On days my husband is home on the weekends, if I have to work, I try to rest then go out to dinner if he wants to do something. With toddlers, I would try to pick the time of day you feel best to do activities with them, and even if they are not nappers, I always had my children to have quiet time in the afternoon for an hour or so depending on their age where they could look at books if they did not nap. I did nothave a pots diagnosis when my children were small, but I remember feeling tired alot, so I had a childproof family room and their toys were kept there in a section so if I wanted to lounge on the couch, I could, but I could be right there with them. I never could sleep during the day and still can't but I do believe in going to bed early.