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BEE

Fatigue..and Frustration

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I have been Severely fatigued for about 3 1/2 mths. now I am frustrated. I can barely do daily self care activites on certain days..on those days I either push or dont do them at all. This is the kind of fatigue I used to get right before my periods when first diagnosed with autonomic probs.

I have had a fw tests to check of course for the normal things they think of :

thyroid

EMG

sugar(which has been off sometimes)

anemia

Nothing..answers it. I am not depressed by any means in fact since my POTS diagnoses I had been doing fairly well. I cannot tolerate caffeine due to cardiac history.

I dont know what doc to turned to "to look outside the box" mitochondrial disease was suggested yet I dont meet alot of what its description is. plus medicare doesnt pay for its bloodwork.boo on them

I am just SO flippin fatigued all the time..not normal fatigue either like the kind you feel as though you could collapse at any moment and of course I don't. I notice when I lay back down I kind of get dizzy for a minute other than that.

It is really starting to freak me out ok ..I admit it has been for a while now.

Ideas..suggestiions..??

Thanks for listening..hate to complain just aggravated.

Bee

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Hi Bee,

The fatigue is the worst part of this for me as well. I wish I could tell you that it will go away but there is no way of knowing. For me, it did get better after a few years. I now have stretches where I feel halfway decent and have the energy to do some things. I consider those days to be a blessing. When I first became ill, I was placed on Adderall and it really helped me a lot for about 9 months. Unfortunately, something changed somewhere along the line and I was no longer able to tolerate Adderall. But while I was on it, it was a huge help. My sister is currently on Provigil and while it doesn't have her anywhere near back to normal, it does help.

Lisa

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Hello Bee,

Yes, the fatigue is frustrating and debilitating and beyond description sometimes. Like you, my doctors and I have looked into everything we can think of, but nothing can be found. In addition to POTS and NCS I have some sleep disorders, but my sleep specialist said they are probably due to the dysautonomia. When ANS dysfunction becomes severe, fatigue becomes severe too. My fatigue is still fairly severe compared to some. I can't drive, cook, clean, do laundry, shopping, etc. I stay home and cannot walk outside of the house. I do as much as I can, but I still must rest a lot.

Life is still very hard physically, but somehow my family and I manage. For a while my fatigue was absolutely extreme. I couldn't even sit in a tub and wash my hair because I didn't have the strength or energy. For months on end my husband had to bathe me - that's how severe my fatigue was. It it still happens sometimes, but it is not my daily norm anymore. I've often thought, "This just isn't the same POTS I had when I was a teenager." But nothing has ever been found other than POTS and NCS.

I have seen some tiny improvements in the past few months. I've been meaning to do a topic on this, but haven't been able to get to it yet. Here are some things that have helped me: continuous birth control, Provigil, rest, exercise only when "easy" to do, 10 mg of midodrine in the morning only, and B12 shots. With these treatments I've been able to keep a baseline witout crashing as often. I've even been able to build up a little more strength.

I wish I could give you answers or a way out of the fatigue. It takes time to figure out what the best course of treatment is for each individual. Listen to your body. Rest when it tells you to. Exercise when you're able. Keep trying different meds and treatments to find your best combo. Hang in there.

Hugs,

Rachel

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I'm so sorry sweet pea. My fatigue is mind boggling too. I did find out from jake's doctor that people who have vivid dreams have a type of sleep disorder. I have such vivid dreams, it feels like it's all I do all night. I did write to my doctor about this, but of course, have heard nada.

I just thought I'd bring it up. The thing is, there are so many sleep disorders that cause severe fatigue during the daytime, you may look into that aspect. I can't get anywhere, but maybe you can.

I know you have felt awful for awhile now and I can't help, but I think of you so often. Just know you've been in my thoughts...morgan

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ME TOO!!!! (yelling and stomping my feet... only in my head cause I'm too tired to move more than my fingers to type this)

I HATE it!! I have not found answers either and don't know where to turn. I've debated some of the CFS treatments out there - but don't have the energy to keep chasing down rabbit trails.

I was at Vanderbilt recently. They are beginning to study the fatigue because they are finding that 50% of their POTS patients have severe fatigue. But they only have guesses right now and no help.

Both Vandy and Dr. Grubb suggest trying some of the typical stimulants used for ADHD... like Adderall, Ritalin, and Provogil. I've tried them all and they make me feel better for a week or two and them my body goes into over drive and my Heart Rate is out of control. So those options are out for me.

If anyone ever learns anything or gets ideas on how to deal with it... many of us will be very excited. But for now, I just try to cope best I can.

BTW, Bee... I get periods as long as 6 months before I get a short period of relief. I just had a 4 month one... with a 10 day one week reprieve and now headed back into it. It's so hard on the emotions - not knowing when they will hit and how long they will last.

~Roselover

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Hi!

Yeah, fatigue can be pretty brutal! I am actually not even sure that I really know what it means to have actual energy anymore! I have had pretty bad fatigue etc. at least since some time freshman or so year of high school, over nine years ago! Some days can be a lot better than others, and sometimes it is close to impossible to move and do much more than sleep (or try to) all day!

I have yet to find the secret. I would love to know it! I know it is different for everyone.

Hope that you can at some point in the near future get some form of answers and relief! :)

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Bee

I know how you have been feeling to some degree...I have had the chronic CFS since the mid 80's...then disabling fatigue/insomnia 1990 and tachycardia..wore holter monitors and ran thyroid test..no answers.

Then I got sleep studies...very LITTLE refreshing sleep due to alpha delta disorder...no cure for that B but it VALIDATED the fatigue.

Now the last couple of years have worsened with NO EXPLANATION.

I have heard this from a handful of us.

If I did not know better, I would swear we all lived in the same house and there was something nearby making us ill.

But we are all states away in some cases and it's FRUSTRATING.

I explained my theory to you I think...I am always TIRED but some days can push...and then get the adrenalin going and DO THINGS.

Other days. on top of the fatigue is the 'gravity deal'...like I may feel faint or like I am going to fall down...and can't leave the house or if I do, can't drive.

It's so mind boggling. But no offense to others taking stimulants like Adderall to SPEED UP our bodyies and HR is no good option for me for many reasons I will not try to explain here. Midodrine helps as it does not cross the BBB to add jitters. but still I feel DEFLATED when that wears off and I only use it for 'emergency' type uses..going to a nearby music concert at small park or theater for example.

So I don't know what the INDIVIDUAL answer is...but I am sorry you are dealing with this Bee...it must be MADDENING to those of you raising kids and to the rest of us as well.

It does STINK.

images.jpg

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Guest tearose

Yes, yes, yes..sure do understand this fatigue and the frustration!

Been there, done that and am in the middle of it again. I got an infection in August that sent me into a relapse and still have not found the steady balance yet.

So, no, there is no formula that is always going to work. Sometimes you may bounce back right away and sometimes it can take a loooong time.

As the others have said, try different things that have worked in the past and see if it helps. You probably do all the regular stuff like water increase, electrolyte supplements, smaller frequent snacks, compression, some rest, some activity, adjust any meds...be gentle with your body.

The only thing others haven't mentioned that I recently discovered... ;)

Sometimes now I intentionally will do one thing to extreme to kinda smack my system into shock. It seems to be like in the olden days when the TV went haywire and someone would smack the side of the TV and it would work again... :)

Seriously though, I now will try intentionally doing 10 jumping jacks several times a day, or turning the temp of my shower a little colder or warmer, or totally doing more compression or totally taking off compression...just something to jar my ANS into a wake up call.

Maybe it is like the ANS is being "shocked" into finding a way to get back into balance, Maybe it is just something to break up my monotonous life...but hey, if it works, even for just a few days, it is worth it.

Keep up the search for the answer and eventually, you will find something that works.

...meanwhile, grab a cup of hot chocolate and join us in the lovely potshole!

best regards,

tearose

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O dear do I ever have the same problem!!! and I love that you posted this topic b.c I am going through the same thing right now :) I have been struggling with my body rejecting my meds (primarily by hbp) since last sprng and it is just a total bummer

I don't have the answer, expcept to do the best you can and stay positive.

Has anyone been able to go back on meds they had to stop for not tolerating before? I am considering doing that

Rachel- may I ask why you only take midodrine in the AM ?

(((( hugs))))

Madeline

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Madeline,

I have a strange reaction to midodrine - it actually drops my bp when I lie down. I need to lie down often during the day to rest and recover from sitting, but when my bp drops to 80/50 I don't feel well, and so that makes it harder to recover. I take Midodrine in the morning when it is most likely that I'll be able to be in an upright position for 4 hours. Midodrine does help vasoconstriction for me, and so it is helpful if I'm upright.

Rachel

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Thank you all for your replies and story sharing...not that I wish this on anyone.but to know some have comparable fatigue kinda helps me be a little relieved in the "this scares me" dept. I have been calm with it not running to the ER or docs ALL the time.

I did however go to my doc yesterday followup..and he thought hmm...I never did a mono test"? DUH...I told him how I felt months ago. SO we will be doing one. He would like to try me on Synthroid..even though my thyroid levels are mostly normal.

For energy..he feels it is the safest way. My mom of all people said he should check me for TB.(odd)

I know Sophia you have tried this..anyone else? I am a little reluctant due to arrythmia history. BUt i am desperate for energy..at least for the holidays.

I tried the B-vitamins complex they themselves gave me palps.

Why cant things ever be easier on us I will never know...not like we have enough with the cardiac aspect and staying upright.:angry:

SO at least he listened I return in 2 wks. Not sure about the synthroid..it was the lowest dose I believe. .25mg

B

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Bee,

It's good that you and your doctor have a plan of action. I'm glad there are some things you can at least test and try. Even if all it does is rule them out, it can be helpful just to know that you've done all you can.

I've never tried thyroid meds, but my thyroid levels have always been very good and not even close to too low or too high. One doctor wanted to start me on thyroid meds, but my POTS doctor recommended against it in my particular case. He said it wouldn't hurt, but it wouldn't be of help to me either. I hope it helps you! Some people need higher levels than others, and just because a thyroid test comes back normal doesn't mean it is normal for that individual. So, who knows, thyroid meds might be your "magic pill". :angry:

Rest well. I hope you can find a good balance and feel better soon. And if not, I wish you the grace and peace to endure.

Rachel

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