Advice For Extreeeme Fatigue

[ramakentesh]

A lot seem to mention D-Ribose - ive just ordered some. Licorice can sometimes give me energy. Also exercise can improve my fatigue levels a bit. when i get desperate, caffeine but i think over time it makes me go backwards.

[roxie]

Id like to know how d-ribose works for you? Rama. My dr mentioned it to me last week. He had me try carnitine but for some reason it made my heart beat faster, so I stopped it :/

[bellgirl]

Exercise helps build up your calf muscles to get better venous return to your heart, and will improve your energy, even though you don't feel like doing it...Try choosing different Beta Blockers with your doctor; I'm on Bystolic, which is cardioselective, and doesn't effect my breathing as much; it works on the vessel walls and the baro receptors. I'm glad you are having a sleep study, because my Cpap machine after being diagnosed with sleep apnea is helping me get better sleep, which helps immensely! My neurologist almost put me on Provigil, but the insurance company denied it, and after everyone who was on it told me of all the side effects, I was glad that I had my doctor check my vitamin D levels after some research. I'm now on Vitamin D3, 4,000 I.U.'s for a month, and also am trying CoQ10, which is seeming to help my energy level as well. I still have dysautonomia, but am much more alert after changing just a few things within the last month; I hope this helps...everyone is different, but we can all relate to fatigue; it's just a part of this disorder!!

[martiz]

Fatigue can be one of the hardest things to fix but I strongly suggest that you do not turn to stimulants. That is a fast way to fatigue your adrenal glands and end up in worse shape than you are now.

Many things can lead to fatigue that are easily treatable and may lessen the overall burden. Are you eating lots of carbs to give you that energy boost? Are you drinking a lot of caffeine? These things can lead to a crash which makes you feel worse overall.

Another thing to make sure of is your thyroid. Did the doctor tell you it's okay or did you review your labwork? A TSH over 2.0 is usually considered hypo but the better docs. Current mainstream medicine uses 4.0 which is in reality raging hypothyroid.

Gluten seems to cause inflammation which leads to fatigue in me. I'll keep thinking - a little brain dead tonight.

Marti

[mully2014]

Yeah I've heard of the gluten stuff going both ways some people go gluten free and feel energized but others feel evenmore fatigued than before.

[bkweavers]

On the thyroid issue, I would like to know what the doctor tested? Only testing your TSH means nothing. He should have done a TSH, Free T4 and a Free T3 at the least. Long ago, my daughter's doctor told me they have many POTS patients who had hypothryoidism as well. They didn't know why it seemed so common. My daughter was born without a thyroid gland so she's been treated since she was born.

Do you have other symptoms besides the fatigue like dry skin, hair loss especially eyebrows, constipation, irregular periods? There are many more symptoms and the interesting thing is that many of the symptoms are the same as POTS like brain fog and dizziness etc.

I agree with Marti about the test results. Many people with thyroid issues are now realizing that their test results are less important than how they're feeling.

As far as medications for fatigue, my daughter was put on Provilgil which helped a little. For her, I pushed for the doctor to let us try more thyroid medication and it worked. She is still fatigued at times and needs lots of sleep but she isn't sleeping 16+ hours and waking up still tired like she was.

I sincerely hope you find something to help. I don't how old you are but you look young and I hate to see you struggle! My motherly heart goes out to you & I send big hugs your way!

Brenda

[CC101]

Kimellgirl - I am going to start an exercise regimine and really hope I see an improvement, it seems to be a popular suggestion among POTS patients. I am hoping to get the sleep study very soon as well.

Martiz- I agree, the last thing I would want to resort to is stimulants. I do get a lot of carbs, but that does not seem to help. I think I may start a gluten-free diet to see if that may help. Oh, & my thyroid has been checked and they said everything was fine.

Brenda- You are so sweet =} Thank you for your kindness. I am 22 =) I had a thyroid test at the hospital, but I am not sure how thoroughly they checked it but they said it was fine. I do have chronic constipation and was diagnosed with IBS. I have just about every symptom you can think of but the fatigue is what frustrates me the most. I am going to do everything I can to improve it and plan to start an exercise regimine, sleep study, gluten-free diet, and possibly supplements. My heart also goes out to you and your daughter & I send my blessings your way. Big BIG hugs to you both =)

[Hope]

I didn't read all 3 pages of responses, but fatigue is one of my worse symptoms. I have had CFS for years so I'm not sure where my POTS stops and the CFS picks up for fatigue, but I can't miss a day of taking my Stress B-complex. I also can't overdue, that is a sure set back.

[RichGotsPots]

i posted awhile ago that green juicing has helped my fatigue the most...

[CC101]

Thanks Rich, I looked up your post and have always been interested in trying something like that. Good for your health all around! =)

[ramakentesh]

D-ribose is good gear

[DoozlyGirl]

Dr T Chelminsky is now at the Medical College of Wisconsin and I heard him speak the other night on one root cause of mitochonrial dysfunction leading to POTS/Dysautonomia. He is treating patients with L Carnitine, Co Q 10 and about to add additional supplements to his program. He mentioned Riboflavin. Since he mentioned Paul Cheney, a leading CFS researcher, I wonder if he will be adding D Ribose and other mitochonrial focussed supplements. When I had horrible fatigue, I began bey reading up on Jacob Teitlebaum's theories. He is quite controversial, but had books and a website that does a good explaining fatigue. He is pretty big into delivering the building blocks to feed your body chemistry and promting the body to make enzymes and cofactors to function.

Best Wishes,

Lyn

[lgtaylor100]

Fatigue has been my worst symptom since the beginning of this disorder. All of my thyroid tests have been normal so far. The integrative doctor ordered a reverse T3 blood test to look for Wilson's syndrome which is a disorder of the thyroid which does not show up on the usual thyroid tests. He is also having me track my temperature three times a day for a week since low body temperature is an indicator of thyroid disorder.

In addition, he gave me a kit for urine and saliva testing for neurotransmitters. If they are problems in this area I believe he will treat with supplements.

In addition, he gave me a kit for urine testing to test if my liver was getting rid of toxins. Although I have been tested for Lyme many times he also took blood for a lyme test that is supposedly more sensitive.

He increased my ALA, Coq10, and gave me a mitochondrial formula supplement. I haven't started any of this yet because I am getting nerve block shots for spinal stenosis next week and the pain management doctor does not wanting me taking any supplements prior to the procedure.

My follow up appointment is not for two months, but I will let you all know how this all works out. Has anyone been tested for reverse T3.I may start a separate thread for this.

It seems my stamina has become more problematic so I'm hoping that some of this helps.

Lynne

[ddschool]

Fatigue/weakness are my worst symptoms too. I've been getting acupuncture, & it helps some-it gives me 1 or 2 good days that I didn't have before. Also, protein shakes like Muscle Milk help a little. And, pacing my activities (not doing everything on a day when I feel good or I'll pay for it the next day).

[mully2014]

yes! Definetly pacing out my activities I feel like I have enough energy some days but if I over do it then I will feel out of it for days....hard lesson for m to learn cause I'm always a person who wants to be doing something!