Can You Share With Me About Fatigue...

[comfortzone]

After a couple of major surgeries is when my health took a major twist ~ After some time my issues were explained away by hypermobility syndrome or EDS-HM.

But the one issue that cause the most angst -- to me anyway -- cannot be explained entirely by hypermobility syndrome and that is fatigue or exercise intolerance or what amounts to limited energy to do a days activities.

So I'm curious how many dysautonomia patients have fatigue as a major undesired symptom? And was it the fatigue that brought you to seek out diagnosis or was it a combination of things?

My new experience of chronic joint pain and chronic myofascial pain is not fibromyalgia nor chronic fatigue syndrome but is due to hypermobility syndrome ~ that much is understood thus far.....

But for a year and a half now I can only be active on my feet doing things for about 4 hours. After that I feel compelled to lie down flat on my back. How this manifests ~ Well I couldn't keep up with productivity standards of a job I had so got let go - aka fired. They loved me but felt something was wrong (at that time docs were thinking MS). So more workups ensued with nothing found. So now I'm trying to work four hours a day for 3 days a week at a new job where the boss knows of my inability to stand longer than that....

I just BARELY make it.... I start to limp ~ I get stiff everywhere.....and simply have to drive home and lay down. Rarely will I sleep but occasionally I do. Most often it's just resting with eyes closed for a couple to four hours. When I get up I can resume my normal activity....till bedtime.

So it's been a long time like this......I'll get heart palpitations, sweaty, sometimes flushed, occasionally vision will dim as if to faint. But most of the time it's just feeling weak like I better sit down before I fall down after 3 to 5 hours mostly around the four hour mark. Once while sweating my heart rate was 142 just from standing at the job.

This top notch neuro doc thought it was a need for 'counseling' ~ Of course I don't agree. Just because my hand grip is relatively normal does not mean I don't feel weakness and find activity intolerable at times....

Since finding this website I see I have much in common with the widely varying blood pressures and a baseline tachy heart rhythm with some atrial tachycardia as well found on holter......so now I believe I have POTS type symptoms though not near as severe as many here. But trying to get housework done is a never ending battle as it takes me three times longer than it has my entire life........Nothing ever gets completely done because I am always a day or two behind!

How many of you experience fatigue? What are your good hours of the day? Do you have good and bad days or are they always with fatigue? Have you been this way as long as you remember? I hope you can share ~ and also let me know of any coping strategies so I can live more peacefully within these limitations......or any ideas from healthcare providers on how to get more energy? I am not depressed or having issues where movement limitations are emotions driven ~ this is clearly physical. Thanks so much!

[Chaos]

Yours sounds like a very familiar story to me. I think I've had symptoms for many years but have had a couple big-time crashes in the past 2 years....both times after surgery (and an associated infection one time).

I'm definitely hypermobile but haven't gotten an official EDS diagnosis or testing done yet.

The last big crash started after surgery last summer and I had to stop working for 9 months. I'm now able to work for 5-6 hours/day, 2-3 days a week. I walk a lot in my job which is good as I do much better with walking than with standing. Some days though my legs feel like spaghetti and I find myself looking for a chair all the time.

I still have days that are "bad", but compared to the many months when I couldn't walk 20 feet without breathing like I was climbing up Mt. Everest or having my HR at 150 just getting out of the shower, I think my days now aren't so very bad.

I'm worst in the morning. Usually tend to feel as close to normal as I'm going to at night. Sometimes I really don't want to go to bed just because I feel so good (comaparatively) and I dread waking up feeling bad again. Many days I still HAVE to take a nap but at least now there are a few days where I can make it thru the day without one.

Personally, I think time and meds have helped me a lot. I'm a big believer in exercise but for months any time I tried to exercise I was sick for days afterwards (e.g. go for a walk and by the time I got home I'd have a migraine, nausea, weak and shaky and then would have the migraine for days after.) Just in the past month, I'm able to push a little bit on exercise and do more but still have reprecussions the next day or two- although not quite as severe.

While meds have helped my cardiac and GI symptoms, fatigue, weakness and temperature regulation remain my biggest complaints.

Sorry you're having to deal with these same issues but glad you found this site to help you learn more and know that you're certainly not alone. Welcome aboard!!

[ramakentesh]

Im definately not hypermobile - but fatigue is my bread and butter.

[firewatcher]

Fatigue is my worst complaint. I just run out of energy and there is NONE left, I can't pull it from somewhere else or borrow it from tomorrow. It is just a strength sapping, fuzzy-headed dullness that creeps up on me, unless I exercise or do something strenuous, then it's fast. My best times are actually at night. I am normally a "night owl" and can do far more in the evenings, with fewer effects than I can during the day. I am horribly tired and symptommatic first thing in the morning, then the meds kick in and I am OK till about 2pm. I slow down again from 2-7PM and then I'm either OK or wiped out (depending on the day.) I have not found anything that gives me more energy, other than naps and most of the time, they don't happen.

[hensor]

I'm another with PoTS and EDS/HMS.

and yes, fatigue is one of my major symptoms. I reduced working hours down to 15 hours per week and am now off sick entirely and loosing my job.

And yes, the 'get so far then have to lie down and 'shut off' from everything' is very familiar. I will get so exhausted that I can't talk and can barely lift a finger. Like my whole body switches off and I can't even run off stubborness anymore.

I have good days and bad days. One thing that is actually really helping me is learning what the little early warning signs are and taking mild evasive action at that stage. Things like: I use a wheelchair 'out and about' due to combination of extremely loose knees and pelvis plus PoTS. Normally I potter about on legs whenever possible. The first slurring-ness I notice (or someone else notices) and I will make sure I don't stand up any more than absolutely necessary for the next little while. Basically I am learning to recognise the major triggers: eating a full meal, standing up, sitting still, talking lots, being too hot or dehydrated.

For me, a quick 5 minutes 'time out' for my body at the early signs really helps stave off the major 'wipe-out' crashes and the overall result is being able to do much more.

Sorry, I'm not sure I've made any sense cos I am currently too hot, and the freezer isn't big enough to sit in

[Kujiforo]

I am super tired all of the time, not sleepy, just feel worn down, no matter how much I sleep. Its bad because I have hyper personality so I tend to push it even though I feel awful, then end up near fainting, just like I did a few minutes ago. Fatigue is a very large factor in whatever I have. I have yet been diagnosed, but doctors are leaning towards form of dysautonomia or Fibromyalgia (I don't know much about that). Often I feel like I'm really weak, sometimes so much my arms go limp...other times I'm so worn out from the widespread ache and pains shooting in random parts of my body. And sometimes its the tachycardia bouts that wear me down the most.

But that general feeling of fatigue is just awful. I can relate!

[comfortzone]

Thank you so much for answering ~ so fatigue or running out of gas IS an experience that can be wrought by these autonomic changes....I so appreciate any and all who post to this.....

Like some of you ~ easily my worst time is the very moment I open my eyes in the morning. I can so relate to actually getting to almost 'fear' the mornings ~ yet I do not give into that. This speaks more to the pain & stiffness experience ~ and meds do finally kick in and I'm off to try and "normal" the day away ~ And as many of you the tank does run dry.

I've read that pain can induce feelings of tiredness ~ but it seems to me there is more to it than that....and that it must have to do with these widely varying heart rates, rhythms and blood pressures. My pain meds do help quite a bit ~ but don't impact the lack of energy. I do not feel like the pain medication is causing somnelence or sedation at all ~ I'm wired and fatigued at the same time.

I do generally feel a fresh start if I am able to lay down as you've mentioned 'before' the point of being made to because of symptoms......I guess you'd call it pacing activities. I know something is wrong because this job I have is one that I truly love and it too like mornings are faced with dread because of how beat up I feel. Yet a sedentary job I can't see as being that much better an option ~ as I feel the need to lie down even if I'm just at the computer typing as I am now.

I am now on 50mg of Metoprolol ~ I guess it's supposed to cut down on sympathetic outflow per the package insert.....if it were that easy I think all of us would be on Metoprolol. So far it hasn't produced the effect of less palpitations ~ which I could see frustrated my cardiologist. I began with only 25mg a couple weeks ago. These are relatively low doses because they fear you will get low b/p with too much of it. My pressure again today at awakening was about normal 118/70 ~ standing it is again 140's/110's.

Additionally I feel a completely new type of fatigue that I think is Metoprolol med-related. I think it will fade as my body gets used to it perhaps.

Night times are a blessing because I'm fed up with the day and feel safe when alone in my room and no one can ask a thing of me save the cat. I get a bit of an energy windfall if I've respected my body and laid down half way through the day once or twice. I love this energy and use it to keep up with housekeeping, bills etc. If I don't get it ~ well I can get irritable and exhausted at bedtime and oddly feel unwell and unable to sleep ~ thoughts racing and I hate when my house looks a heap just for not picking up that day......it snowballs blah, blah, blah eh?

I was interested to read about the temperature regulation.....this is new to me to hear about. My history had been to not wear a winter coat ~ but perhpas a light jacket when 18 degrees below zero outside. Years ago when I drove a snowmobile I had to dress ultra light ~ it's a physical activity and when I'd arrive at my destination I would literally leap off the snowmobile and dive into the snow to cool down ~ I could not whip my jacket off fast enough ~ so amazingly hot!

Where I now live though is a blessed 60 to 65 degrees almost year round....if anything my feet will get cold ~ it's near the ocean and kind of damp. Sounds like I should count my lucky stars I don't live in a temperatured climate that is more challenging. I again thank you all for sharing your experiences -- it's helpful and I truly appreciate it ~ :-)

[Noreen]

Where I now live though is a blessed 60 to 65 degrees almost year round....if anything my feet will get cold ~ it's near the ocean and kind of damp. Sounds like I should count my lucky stars I don't live in a temperatured climate that is more challenging. I again thank you all for sharing your experiences -- it's helpful and I truly appreciate it ~ :-)

60 to o65 year round? hmmm. How's your barometric pressure? Your locale could knock Hawaii out of the running for me.

We just had topic 'Has anyone moved due to PoTS?" and your climate is what everyone is after.

hope you have a good evening,

noreen

[mynagirl]

Wow, I had no idea the fatigue thing and especially the awful-in-the-morning okay-at-night stuff was so common. That's me EXACTLY. It's so frustrating because it makes housework or home improvement such a risky endeavor - I never know if I'll feel good enough to finish what I start.

I know this is a bit of a threadjack, but while we're on the subject of fatigue and when the symptoms hit us, how many of you have your POTS symptoms:

1. Every day

2. Some days, not on other days

3. Every day for months at a time, relatively normal (if not a marathoner) for weeks or months at a time

I fall into #3 and I never thought it could be wholly POTS because the arcs seem so weird to me. Does anyone else have arcs? Is it just weather and I've never noticed it?

And yes, I want to know where nowwhat lives too!!

[ramakentesh]

Id be much better nocturnal - maybe... Well i feel better at night as well.