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Advice For Extreeeme Fatigue


CC101
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Hello everyone, I hope you are feeling well today. I wanted to get some advice on how you all deal with your fatigue and how you get it under control. It is literally what is killing me with this whole POTS thing. I am copying and pasting from my last post, which was back when I posted my very first post and kind of disappeared after the fact due to just being scared and not being able to handle my diagnosis at the time. I apologized and thanked everyone who commented and welcomed me and the post is still there to read. So right now, I am hoping for your help on this issue.

So, I am here asking a first of what may be many questions. I want to start with my fatigue; this is where my doctors are really beginning to frustrate me. My primary, neuro, and cardiologist know what I have, but I strongly believe they are not realizing exactly what I deal with on a day to day basis. They keep trying to come up with other reasons why I may be fatigued instead of realizing that POTS is why I am fatigued. My primary does not want to put me on anything that would affect my tachycardia, even though I am on betablockers that have my tachycardia under control. We have ruled out depression and thyroid problems, and since he does not want to put me on anything that would affect my tachycardia, he says there is nothing I Can do. Well, then I talked to my Neurologist. He wants to do a sleep study because he thinks That may be causing my fatigue! I am at my wits end, I could handle this so much better without this fatigue! I know I could. Does anyone have any suggestions or ideas? How are you all managing your fatigue? I am planning on going to a specialist soon, but in the meantime, is there anything I can do to convince these doctors to help me? BIG HUGS TO YOU ALL! & I hope your day is easy on you and that you are doing well. ♥ CC

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Hi CC

Unfortuntately (for me anyway) i think the Fatigue just goes along with the POTS and cannot be treated, unless theres something out there ive missed!

I think the level of fatigue certainly depends on how well controlled the symptoms are...if u are experiencing alot of tachy the body tends to tire alot quicker.Sometimes whether symptoms are good/bad it does not matter...the fatigue can just hit.

I havent had it for while and suddenly again this evening it hit like a thunderbolt and I could'nt move from the bed. When i say to my family "ive got that 'hit by a truck' feeling" they know what im on about now! Its horrible and certainly one of the harder things to deal with cos it can be very disabling.

I try to manage the general fatigue of pots (not this more extreme fatigue) by making sure i get enough sleep, on my days off I dont run and race around doing things that are really not that important....i tend to try to chill out on the couch with some dvds and give my body as much rest as I can. Suppose there are diet related things that can help with the fatigue i.e minimising extra strain on the body by keeping a low sugar diet....im not at all good with the food related things tbh...maybe someone else here could give some pointers.

I really do understand ur frustration and upset with this...ive been thru it and not that long ago. It does my head in, im a very strong minded stubborn person and tend to go go go! Its been very difficult to accept that there is little i can do about the fatigue, its part of it. The only control I really have is try to minimise the extent to which I have to experience it.

Hope its of some help CC. Chin up.....and dont be afraid to ask any questions here. Ive found there is always someone who will answer!!

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I'll bet betas are contributing to your fatigue. What time of day are you taking them? Which beta and what is ur dose? What is ur BP? What is ur HR on betas? Sorry for all the Qs, but the way to figure out what is wrong is to figure out what is going on with ur body.

It may help to talk to ur doc to see if you can switch to taking them at night and/or switching betas. They were great for me for tachy and I still take as needed, but For the most part my HR is managed with Paxil. No fatigue as a side effect. I would recommend Compression hose and salt - they can help keep ur BP up. Good luck!

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As hard as it is (and I have chronic fatigue, ehlers-danlos, hypersonmia, arthritis and OH), you have to exercise. Start at baby steps, whatever you 'enjoy' (and I use the term looslely knowing how hard it is) doing and what is safe for you. Honestly, don't look at how long you do it--even if only starting at 3 or 4 minutes at a time. You will find that it will help protect you from deconditioning and your muscles from waisting. I started with physical therapy--treadmil in heated aquaciser. After that I am up to 25 minutes a day on recumbent stationary bike. Exercise releases a morphine like chemical in your body. But it builds your endurance and helps keep things toned.

Otherwise, I agree with energy conservation--doing things at the time of day that you seem to feel your best. When I have a good day--I jump on it and get as much done as I possibly can (for fears it will probably bring me down a couple of days). I'll microwave healthy choice or steamer meals or low sodium soup (if I cook a family meal--I have to plan ahead and prep in stages ahead of time--doing crock pot is another easy way). I use chair in shower for the syncope risks but it also conserves the energy. Humor also stimulates release of 'feel good' chemicals from your brain. With my fibro and EDS, I have to be very cautious as to not exercise to the point of inflammation (things are already inflammed--so have learned to listen to this body, especially since I can't take NSAIDS, aspirin or ibuprofen). My sister is hospice nurse and to work long hours/shifts she does--she swears by energy drinks. I wouldn't try that but my heart rate is slow enough it can handle morning coffee. I also use isosource as form of liquid protein packed with vitamins and minerals since I have GI issues/malabsorption. I have never had a cardiologist, rheumatologist, genetecist, physiatrist, or orthopedist who did not say that not exercising was an option.

Forgot to mention I have had 2 sleep studies--both show hypersonmia, excessive daytime sleepiness, mild narcolepsy. I do not get into the stage IV (deep stage) of sleep and have very little REM sleep. What little sleep I get is light (stage II) and even in that I had nearly 200 interruptions of alpha waves (waves that tell you 'wake up. it's time to get up') in my sleep. I had the all night/day studies both times/different places. They also detect things that you may not be aware of that interfere with restorative sleep like restless legs or obstructive sleep apnea. Because of the test results, my rheume started me on sleeping agent--but the ones that got me to sleep quicker only lasted (with me) til about 2 a.m. and it was like somebody turned the lights on. One of them, I had sleep walking, talking and eating (before the literature/even sleep doctors were alerted to this side effect). So I take old time one--gentler but takes so much longer (and sometimes misses the window of opportunity) to get me to sleep and then I am still tired/sleepy in the day. But I figure any night time sleep is better than none. While sleep hygiene tells you not to nap more than 20 min. and not past 2 or so in the afternoon, my sleep doctor told me that rather than use big guns (there are Rxs) to get me to sleep and then another Rx to make me more alert (in day), since I don't work outside the home to go ahead and nap when I need to (I still have to fight late afternoon/early evening battle body craves sleep).

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Besides nausea, fatigue is one of my worst symptoms. I have been fighting it for 8 years. I have done everything that is mentioned here.... unfortunately it's still one of my worst symptoms. One thing I know for sure that made it worse was the beta blocker Bystolic. It did control my tachycardia, but it made me feel like death warmed over.

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I have bad fatigue too. A chiropractic doctor has helped me so much because she recognized some of my symptoms as what she went through when she was younger. I know POTS causes fatigue, and she was way against a beta-blocker since it can cause fatigue. The tachycardia never bothered me too much. Also, I have high titers of the epstein barr virus, which makes sense that I am tired because I am fighting a battle inside my body. I rest and try not to push it, because I will pay for it if I do. Also, take a lot of vitamins to support my immune system and cells. Light exercise helps too and helps me to sleep better.

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Thank you for all of your replies, it means a lot to me. It is sad to see that you all are still struggling with the fatigue. I thought there may be some type of stimulant POTS patients could be prescribed. I have seen some other POTS patients talking about this so was interested in what those medications were and how they interacted with beta blockers. I hope to find some answers because it is not a matter of just dealing with what I can on a day-to-day basis. It is an everyday thing bringing me way down. I am determined to get some relief and hope I can find a way, & I hope you all can too! ♥

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There are stimulant meds that pots patients use. However, most docs (cardios and others that don't specifically specialize with POTS patients) aren't comfortable perscribing them to POTS patients, especially those who mostly have tachycardia (rather than those that have tachycardia caused by low-bp). Sometimes for the obvious hr implications, sometimes because that is an off-label usage of a controlled substance in a condition they probably aren't that familiar with. There are some docs that will. Stimulants can sometimes raise bp, which is why they can be extra-beneficial for those with low bp. However, they can also cause tachycardia and make it worse--- if I remember right you say that you are having problems controlling your tachy at work still?

I can't speak for you, but I know personally I originally didn't show low bp readings, but that was because my hr was super high compensating for the bp-- this is what was contributing to my dizziness. Yours may just not be low. Both low bp and high hr can independently make fatigue worse. Both can sometimes be improved with exercise. Often docs will require you to try an exercise protocol to see if that improves hr and fatigue before they put you on a controlled substance. Docs also probably will want you to have better control of the tachycardia (your main "textbook" symptom) or at least figure out what is going on more in depth before they put you on a drug that can cause tachycardia.

I've often had better luck with nueros willing to deal with symptoms like fatigue-- my cardio is excellent, but doesn't want to treat non-cardio symptoms, even ones that are worse because of cardio meds like beta blockers. Sometimes nueros are uncomfortable messing with things that might affect cardio meds.

Sometimes it isn't bad to have testing for other problems-- many POTS patients have comorbidities or similarities with other conditions and some people get relief from POTS symptoms by treating adrenal or sleep issues. Also, sometimes POTS patients also have CFS, which can be made worse by overdoing when fatigued, where sometimes POTS patients feel better when they force themselves to get up and move around a little.

I think it becomes a question of knowing your body-- sometimes trying meds can cause "crashes" so many patients like to try and figure out in theory if a med should work. I have a nuero that is willing to discuss using stimulants, but wants to get more testing first. Like you, I still am able to work (fatigue that makes me feel like I am glued to my bed and all) and she doesn't want to mess around trying meds and possibly cause worse symptoms.

Maybe it would help for you to describe you fatigue more, since not everyone with POTS has the same fatigue. Are you waking up feeling rested? If you aren't having tachycardia, is your fatigue level lower? Was it lower before starting a beta blocker? Are you still having increased fatigue upon standing even without tachycardia? Can you tolerate caffiene? Does it help with the fatigue? Does it raise your heart rate?

I would personally say that brain fog, dizziness, and fatigue are my three worst POTS symptoms--- they are also the three hardest to treat/get treatment for personally.

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I agree with Elfie. I think it depends on what is going on with your particular body. Although stimulants seem like the logical choice to improve fatigue and do so for normal people, that is not the first med drs would jump to prescribe for PoTS. I also think that, although extreme fatigue is a symptom of POTS, it can be improved. A lot. I am a living example of how fatigue dramatically improved with the right meds. If you are not comfy with sharing your details on the forum, perhaps you can Look for a dr that knows about other treatment options that can help you in lieu of, or in addition to, beta blockers.

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Thanks so much for your in-depth response Elfie. & thank you as well Yogini. To sum up my POTS, I do not have the drop in blood pressure. Only the tachycardia. My cardio said that was HR was the most sensitive he's even seen when it came to my intolerance. Even when sitting, instead of lying, my HR goes past 100. My tilt table test was immediately positive as my HR went from 80-90 to 135-140 and 155+ when talking. I started on 25mg of metoprolol er succinate and within a month was up to 100mg. The 100mg has been working ever since, but now I believe it will need to be bumped again as just sitting here my HR is 105. I was fatigued before the meds and my neuro is wanting to run a sleep study to see if anything is wrong there. I wake up fatigued and stay fatigued All Day. It just isn't going away or getting better and I am just soo sick of it. You & I sound quite alike Elfie as dizziness, brain fog, and fatigue are most certainly my worst symptoms.. and headaches but i've always had chronic headaches as long as I can remember. So I will just keep taking these tests that my neuro wants to do & see where I can get. I just feel like I cannot go another day like this, it is getting pretty tough. This week especially. I will hang in there though, thank you for your great advice! Hope everyone is feeling well! Big Hugs. ♥ -CC

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CC-- we sound very similar in some respects. I mentioned my BP issues because at first docs did not think I was having any, and it wasn't until we could consistently keep my hr around 95 sitting that my bp made a show--- I still generally don't have incredibly low bp, especially when I am well enough to go out and go to the doc (I generally get low bp in the mornings and evenings). I was severely dizzy but my bp numbers weren't low enough to be causing it. Still, my dizziness improved on midodrene even though my bp is not much higher--- don't know why? Probably due to vasoconstriction somewhere. However, there are definitely types of POTS where there is no bp involvement.

I also get headaches, and I have had migranes since age 12 (they appear to be genetic from my father's family).

Fatigue is a huge issue for me off meds, but both metoprolol ( I only take 50 mg and was able to impact my hr with exercise over time to bring my hr down lower rather than continue bumping my bb up-- it did take 5 months to see a real impact though, but isn't a cure, and I was conditioned at the time). However, each b.b. increase really impacted my fatigue . . . it put the natural pots fatigue over the edge.

My hr was much higher than your initial heart rate-- I've only gotten my seated hr to stay between 85-110 after b.b., midodrene (50 mg 3x a day) and 9 months of cardio (swimming w/fins, riding recumbent bike and weights). With b.b. alone, I couldn't get below 130-150 standing (even with higher and higher doses).

Either way, I do hope you explore other mechanisms that could be exacerbating the trouble---

POTS patients are so variable, but there is hope!

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CC I too wake fatigued and stay fatigued.

I try to keep a positive outlook but it gets difficult.

I take Nadolol beta blocker now, I tried propranolol and the doseage went very high, I changed it thinking it was causing the fatigue.

My hr would get super high if I stood to walk. I have found getting my vitamin d levels from a 6 to closer to 30 has helped my hr be more normal.

I hope you feel better soon

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For me, my fatigue comes and goes somewhat of its own accord. I liken it to a blanket. I never know when it will lift or return. Sometimes it lasts for months on end. I was on carvedilol which really helps with my chest pain in the winter, but makes me much more fatigued in the summer so I only take it as my chest pain requires. Perhaps another beta blocker will help with your heart rate and reduce your fatigue?

Also, I've found that I pool in my abdomen quite a bit so I eat less simple sugars, more protein, and small frequent meals which helps with the fatigue.

My neuro did try me on Provigil (at $8/pill) but it made me feel really wired and then I crashed 8 hours later and was much less functional than normal for a couple days. Midodrine has been really helpful for some folks for fatigue, even those who have POTS without OH. Also fludrocortisone/florinef has helped some folks with fatigue as well.

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of all these years and from the very beginning, extreme weakness is what i would call mine. Because in my mind, fatigue to me is from 'doing' something..... my weakness just 'exists' and is very severe and debilitating. I have tried excersise regimens, to no avail. It's always been among my top 3, and prob would most likely say it's actually my top one in dealing with.

My 'extreme exhaustion or weakness' goes like this: i feel physically weak.... to the point i can't hardly hold my heads, arms up to drive, or stand but a few mins, etc. Too weak to talk, to weak to think, to weak to anything. But at this same time i feel so deathly weak which is often, almost all the time, but some times more severe than others.... like in and out of ranges of severity. But at the same time, the insides of me, maybe my cells, nerve endings, not sure, but i feel like everything inside is wanting to jump out of my skin... it feels so horribly 'wired or electrified times a million', as if i can feel it in every cell........ so i cannot rest. All i can do is lay there, yet i have that wired severely unconfortable feeling...... I never feel like i rest or that my body is at rest. I wake up feeling worse than when falling asleep, like i have fought a battle in my sleep. I am mostly bedridden, even though im working hard with yin yoga, meditation, gluten free, etc.... I did finally for once find feeling of rest last feb/march till now when i started on the klonopin and the mcad regimen... but still feel exhausted all the time, if that makes sense. Im currently in a nose dive pots hole that has totally threw me for a loop and the weakness/wired feeling is horrific and unbearable these past days/today. Plus my tmj started hurting massively today, and many more teeth and gum bones hurt bad in my face. Ugh, i've cried all day....

sorry... im rambling.... yep, i don't think i've actually got to experience the feeling of energy in over 12 years easy..... it's hard for me to grip pens, etc.... write, etc.... most days. On my severest of days, i cannot even grip a pen...... and much more.

How do i cope? Man, i have no clue...... through humor mostly. But today, no coping mechanisms are working for me. I guess im gritting my teeth and bearing it.......

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I got fatigued on the beta blocker too. I also struggle with all of this fatigue and I think even more now because of a new med I'm trying for the syncope, Cymbalta. Has anyone had mjor fatigue on this?

mully,

I had 2 sleep studies, have hypersomnia, excessive daytime sleepiness, mild narcolepsy and do not get into the dee stages of sleep. I was on Cymbalta to try to improve fibromyalgia/arthritic/chronic pain of ehlers-danlos. For me, it made me too drowsy to function in the day and that was with titrating it up just one notch. It does help a lot of people. DH takes his at bedtime and it puts him out like a light. I took mine in the morning (if memory serves).

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of all these years and from the very beginning, extreme weakness is what i would call mine. Because in my mind, fatigue to me is from 'doing' something..... my weakness just 'exists' and is very severe and debilitating. I have tried excersise regimens, to no avail. It's always been among my top 3, and prob would most likely say it's actually my top one in dealing with.

My 'extreme exhaustion or weakness' goes like this: i feel physically weak.... to the point i can't hardly hold my heads, arms up to drive, or stand but a few mins, etc. Too weak to talk, to weak to think, to weak to anything. But at this same time i feel so deathly weak which is often, almost all the time, but some times more severe than others.... like in and out of ranges of severity. But at the same time, the insides of me, maybe my cells, nerve endings, not sure, but i feel like everything inside is wanting to jump out of my skin... it feels so horribly 'wired or electrified times a million', as if i can feel it in every cell........ so i cannot rest. All i can do is lay there, yet i have that wired severely unconfortable feeling...... I never feel like i rest or that my body is at rest. I wake up feeling worse than when falling asleep, like i have fought a battle in my sleep. I am mostly bedridden, even though im working hard with yin yoga, meditation, gluten free, etc.... I did finally for once find feeling of rest last feb/march till now when i started on the klonopin and the mcad regimen... but still feel exhausted all the time, if that makes sense. Im currently in a nose dive pots hole that has totally threw me for a loop and the weakness/wired feeling is horrific and unbearable these past days/today. Plus my tmj started hurting massively today, and many more teeth and gum bones hurt bad in my face. Ugh, i've cried all day....

sorry... im rambling.... yep, i don't think i've actually got to experience the feeling of energy in over 12 years easy..... it's hard for me to grip pens, etc.... write, etc.... most days. On my severest of days, i cannot even grip a pen...... and much more.

How do i cope? Man, i have no clue...... through humor mostly. But today, no coping mechanisms are working for me. I guess im gritting my teeth and bearing it.......

hilbiligirl,

sorry you're having such a bad time with this. sending you virtual (((hug)))

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CC, maybe you want to talk with others on the forum with similar HRs. My TTT result was slightly higher than yours and I sometimes get the rates you mention, but there are lots of others who deal with your numbers, or higher, one very day. Although unusual for your doc they are not so atypical for POTS.

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Rest and Paxil helped fatigue. Klonopin helped dizziness and nausea. Clonodine helped with flushing and sleep, but was extremely hard to get my body to be ok with it. Then many years later Welbutrin helped with fatigue. We are experiments, but with a good doctor it is sooo possible to get better and even symptom free. Wishing you great days ahead!! You can learn lots and lots from all of these great people!! Love, love them!! So glad you are back!! :rolleyes:

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hiya,

i've tried tons of things over the years in regards to easing my fatigue, and the only things that work for me are drinking loads of fluids (3-4litres) and scheduling naps throughout the day. many people told me that my fatigue would ease if i stopped napping and just went to bed at a normal time and got up at a normal time.... but that just made me so exhausted that i had a massive fibro and pots flare up and ended up being so over tired that i was awake for 8days, until my body knocked me unconscious presumably to keep me from seriously harming myself. i was asleep for almost 4 days..... so now i ignore them all and nap! ;):lol:

ideally, my body likes to have at least a 10 min nap every 2-3 hours, but i can usually push that to every 4 hours and have a 20min nap. i loose a lot of my day by doing this but the daytime i get is far more enjoyable and i get tons more done. :)

fi xx

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CC something may help with fatigue, keep looking.

Stimulants, for me, are super temporary but the crash afterwards is days! DAYS of feeling worse because I try something for quick energy.

Something that works without crashing; NADH and Ribose. Each cell in our bodies need energy, NADH & Ribose feeds our need for energy at the very basic or beginning step of energy.

I had a power point presentation I had made to map the cell energy procurement and use. I lost it on a crash and haven't reworked it.

I HIGHLY recommend these two items.

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  • 2 months later...

Thank you all to those who responded, you are all so very great and I appreciate my Potsy family to pieces! I wish there was a way to just cure all of our fatigue because it seems to affect all of us so much.

Thankful – I may look into seeing the options of whether there is another beta blocker that has been known to cause less fatigue. I just know the fatigue was there before the beta blocker and am not sure if changing the beta blocker would do any good. =/ & thank you for listing other medications that have helped others with fatigue. I will definitely look into them and see if any might be beneficial to me.

Hilbiligirl – How I want to grab you and hug you til your pain goes away! I know exactly that feeling you have, & how frustrating it is that you can’t describe something so severe! The way you described it to me made Perfect sense though! It is great to have people here who understand so never feel guilty of having a pity party! We are here to listen and do as much for you as we possibly can. I know some days are hard and life just seems unfair and this condition seems like a sick joke, but you are strong, and you can handle this. Copy what you wrote to me and bring it to your doctors. Ask them for any advice they can give to you on any ways of settling this tantalizing condition and symptoms. I need to follow my own advice here as well. I know feeling lost is hard and beyond saddening, but when you look at how strong you are and how far you’ve come, it doesn’t seem so bad. BIG HUGS to you sweetheart!

Mary – That is exactly what I hope to do, is to either find a great doctor or to educate one so well that I actually create a great doctor! =) Thank you for your wishes, you are so sweet! Big Hugs and wellness to you!

Fiona- It is great to hear that you have managed to come up with a process that works great for you. You seem to have a more severe case of fatigue and my heart goes out to you! I am so happy to see that you put your health first and have your priorities straight in order to live your life to the fullest possible. Kudos to you! Hugs! =)

We-don’t-look-sick – Could you educate me a little bit more on NADH and Ribose? Do you have some links you could share or specific products for recommendation? Thanks a bunch! =)

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