Struggling with severe fatigue.

[Scout]

I'm finding it so incredibly hard to manage with this level of fatigue. 

I can barely type. My arms ache so much when I lift them. 

My family "don't believe" in what I'm going through, even though I have had several doctors confirm it. 

How are we supposed to cope? The exhaustion I get from the most basic of tasks, is just so difficult. 

I'm feeling frustrated and defeated. 

For those out there who get bad fatigue, what do you do to try and remedy it? 

Thank you for reading. 

[Guest KiminOrlando]

What meds are you on? Meds helped me. I still get fatigue. I still rest a lot. I no longer work. There was a time that eating was too exhausting. I know that feeling.

[Scout]

I used to be on beta blockers, but I actually was made worse by them (made my POTS worse, and also fatigue was worse). I seem to be one of the small percentage who cannot tolerate them.

I may be trialing Ivabradine soon.

I take some supplements which seem to assist with my heart symptoms. I'm also on some antidepressants and a mood stabiliser for my mental illness. 

 

[p8d]

Profound fatigue was my presenting overwhelming symptom until I realized I was having tachycardia a few months later.  What helped me the most was getting diagnosed with an autoimmune disease and starting treatment for it.  I started Plaquenil and after a few months I got a bit more energy.  Eventually I was started on SCIG which also is helping with it now.  The other things that help are exercise, ubiquinol (supplement), physical therapy making me stronger, scheduled rest days and better control of HR/BP.  

I also struggled with non-selective beta blockers the first time I tried them but did very well on cardio selective bystolic.  It controlled my HR the best of everything I have tried and didn’t make me fatigued (I took it at night at first, it’s once a day dosing).  I am now on ivabradine which doesn’t make me fatigued but doesn’t work as well on the tachycardia.  I also now occasionally take modafinil, I had been taking it a fair amount of time before the SCIG started helping.  It works well but it took awhile to get the dosing down or I had crashes when it wore off.  I tried Ritalin first but that gave me tachycardia.

[MomtoGiuliana]

Increased fluids and salt helped me with severe fatigue.  Otherwise, just time.  Over time I would get better.  I've had multiple severe episodes of POTS--lasting from nearly a year, to a few weeks at a time.

[sue1234]

I did not have fatigue when my POTS began, but in the last few years, it has made an appearance and gotten bad.  I don't take any meds, so nothing to cause it.  It is my most debilitating symptom now.

[Heartbroken]

Scout, sorry to hear that. I am in the same boat. I have CFS along with POTS. How is your Thyroid? 

[Pistol]

@Scout - at times I too suffered from this debilitating fatigue. My autonomic specialist added Ritalin twice daily ( the very lowest dose available on the market ) and it truly helped a lot. He wanted me to take Modafinil but my insurance would not cover it. Since I have hyperadrenergic POTS and my BP spikes they also added half of the lowest dose of Guanfacine ( this medication helps high BP as well as ADHD ). With both meds added the fatigue became manageable. I hope you feel better!!!!!

[Hen's Teeth]

4 hours ago, Pistol said:

Modafinil but my insurance would not cover it

I am so much more functional with modafinil, but my current insurance wouldn't cover it. Then I discovered goodrx.com. With a free coupon, and using the right drug store chain, I can get it for just under $40.

We have the world's stupidest health care system. While trying to find a way to get back on modafinil, I ran across prices from $37 to $850 to $1100. Prices for an established generic drug should not vary that wildly.

[Stark]

I have had this for some weeks now. My heart rate and blood pressure are pretty fine, but my arms and legs feel extremely heavy most of the time. Makes every thing extremely difficult : /

[nik1980]

I am prescribed a low dose of adderall for cfs as well as fatigue associated with Dysautonomia.  It has been a life saver for me.  I too am currently fighting for insurance coverage because they only approve adderall for ADHD, narcolepsy, and binge eating disorder.  I may have pissed them off when I asked them if they purported to know more than my world renowned doctor who prescribed the medication. 

[Hen's Teeth]

Medicare, along with Medicare Advantage, have a special rule. They are only allowed to approve medicine that is on the FDA list of treatments, and only for the treatments that the FDA lists. They are not allowed to use peer reviewed studies. This is a real problem for those of us who have a condition with no FDA approved treatments.

Legislation has been passed to correct this, but only if the condition is cancer. All other conditions have to follow the FDA list.

Medicaid does not have this requirement. Private insurance is whatever it wants to be that day.