Mind-numbing, bone-crushing fatigue... I can sleep 18 hours a day, and still be completely mentally and physically unavailable for the remaining 6 hours.
I was using provigil, but have stopped due to concerns about possible negative effects on Mitral Valve Prolapse. Will discuss it further at my next appt.
Coffee has become too hard on my stomach, and it wasn't the best option anyway...
So, please, any ideas to help me keep my eyes open?
Thanks, Sleepy Cactus
Posted by randibear (Member # 11290) on :
that's my question also. i went to bed at 9 last night and just got up, it's 11:30 now. Here I am sitting on the couch watching tv and not wanting to do a dang thing, too tired...
Posted by Vermont_Lymie (Member # 9780) on :
I have had to work hard on accepting that fatigue is part of lyme treatment, and to cultivate a more stress-reduced attitude, probably no such thing as stress-free!
Eleuthero is a supplement (Siberian Ginseng) that Buhner's well-researched Healing Lyme book recommends. It seems to have helped me with increased energy in the last couple of weeks. I am very pleased with the results.
But note, there is also some evidence in one study that this is not an effective supplement:
A fairly substantial (96 participant) double-blind, placebo-controlled study failed to find Eleutherococcus senticosus ("Siberian ginseng") helpful for people with CFS.(28)
Over the 2-month study period, both eleutherococcus and placebo reduced fatigue symptoms, but there was no statistically significant difference. (The researchers managed to find some benefit by resorting to statistically questionable after-the-fact procedures.)
(this above info is directly from iherb.com's website)
Ref #28: 28. Hartz AJ, Bentler S, Noyes R, et al. Randomized controlled trial of Siberian ginseng for chronic fatigue. Psychol Med. 2004;34:51-61.
Posted by EWT1638 (Member # 11315) on :
I was originally diagnosed CFS and Fibro (now Chronic Lyme and Dysautonomia). So I have been living with low energy and constant fatigue myself. I know you don't want to hear this, but if you can force yourself, do some simple stretches (I do Tae Kwon Do stretches) and take short walks. It may be that all you can do is 1 block, that is okay. But do something, because it is a vicious cycle. No movement.. no energy.. muscle loss.. added weight lead to knee & hip problems.
See if a fellow Lymie can do it with you.
Posted by sixgoofykids (Member # 11141) on :
My doctor had me start taking NT Factor for fatigue. You can only buy the pure stuff through doctors. Google it, it looks interesting and is clinically proven to help. It's too soon for me to tell you whether or not it's working for me, but I have had a few good days recently that were almost "normal", until this herx started.
Posted by cactus (Member # 7347) on :
Thanks to each of you for the ideas/support. Randibear it looks like we're not the only sleepyheads.
VT, if there is a chance the Siberian Ginseng may help, I'm up for trying it. I don't have a copy of Buhner's book, so if there's anything specific regarding type/dosage, would you share that info with me? It's great that you've had good results thus far.
Six, I will check into the NT Factor as well - sounds promising. My LLMD does not carry anything like that, so not sure about how to find it... I'll check.
Hey, EWT, we're neighbors! You are so right about the vicious cycle of muscle loss and fatigue. I *try* to do something each day, but the last few days it's been like slugging through a pool with lead balloons attached to my legs.
Right now I'm sipping on green tea, hoping for any burst of energy I can find...
Posted by bejoy (Member # 11129) on :
I like eleuthero. I think it helps some.
I also like taking green powder mixed in juice or water. My favorite brand is Enriching Greens from Natural Factors. It almost tastes good.
It doesn't give the same kick as coffee, but it stops the coffee jonzin.
Posted by ESG (Member # 4816) on :
Dr H. had me try Cordyceps, and no effect. He had me try NT Factor, and no effect. He had me try nasal spray Glutathione, and no effect. These all cost a lot of money.
I do take a good vitamin-mineral supplement, and extra Bs. And Kyo-Greens.
The fatigue did gradually lessen with treatment, but I still sleep 10 hours, or else need to take a nap.
The fatigue comes & goes, both the physical & the mental. And yes, it is frustrating.
In Dr. B.'s old guidelines, he urged us to exercise even if it meant napping after or being tired the rest of the day. He suggests every other day - rest in between.
I used to take a few short(and slow) 10 minute walks spaced throughout the day, do a little yoga & stretching. Those 1 Mile Walk & 2 Mile Walk videos by Leslie Sansone are good: she also has some low-impact ones for "older" people.
I can now get to the Y and swim. At first I lasted 10 minutes, and I slowly built up more stamina.
I don't think drinking coffee is good - your body is fatigued, your mind is fatigued; rest. Dr. B., in his newer guideline says to get the rest you need & avoid stress.
It is a transition: admitting to the fatigue, saying goodbye to the old self & your expectations, and learning to take care of who you are now & accepting your present needs.
ESG
Posted by cactus (Member # 7347) on :
Bejoy, thanks for another great idea... I'm in such a fog, any ideas are welcome.
ESG, you've been around a long time... thanks for sharing your thoughts with me. The fatigue comes and goes for me, too - guess I hoped it would be gone for good by now. Your post gave me some perspective on the time frame.
I completely agree about the coffee, even though in the past it's kept me going. The payoff probably isn't worth the cost.
Back to bed... One very tired Cactus
Posted by JeffM (Member # 8919) on :
I wonder if there are some medical / alternative treatments that would help? I've been around here long enough to know everyone's body is individual, so it is trial and error.
That being said, I think profound fatigue is part of the illness. We are very ill people. Give in to it. Rest when you can. Your body needs the rest in order to heal.
My profound fatigue went away over a period of a few days, after a little less than two years of tx. So it is part of the lyme stuff. As the infection goes down, energy goes up.
I did take provigil a few times when I had to function and be alert.
Good luck to you.
Posted by timaca (Member # 6911) on :
I agree with Jeff, rest when you need to...your body is telling you that it is tired.
Sometimes I had to lean against walls to stand up. I could not stand for songs at church. And when I went to see the doctor, I had to hold my head up with my hands. And I used to hike 17 miles over 13,000 ft mountain passes before lyme!
The fatigue has lessened. Antibiotics helped, so did hyperbaric oxygen therapy. Yesterday and today have been good days energy wise. I sure don't take it for granted!
Timaca
Posted by Vermont_Lymie (Member # 9780) on :
Hi Cactus:
I think eleuthero (the new name for siberian ginseng) is a great supplement which has helped me with increased stamina and energy.
I don't have the book in front of me, but remember from reading earlier today:
Buhner recommends 2 capsules 4/day of Nature's Way Siberian Eleuthero (which has both root and extract); and he also recommends a tincture, from Herb Pharm, as the strongest tincture around:
VT, thanks for the specifics and the link - good info. Think I need to go book shopping, too.
I will check out the adrenal fatigue link, too, bejoy. Pretty sure my adrenal function was normal last time it was checked? I'll mention it to my LLMD at next appt.
Azure - so true about eating meat! I was a veggie most of my life & just became carnivorous a few years ago, per doc's suggestion - really seems to help (or did, anyway).
I lean on walls, too - and find myself wondering why they seem to lean on me, too, at times!
Geez, all this info is a great starting point, now if I can only find the energy to read and order stuff...
Posted by clpgotlyme (Member # 7875) on :
Cactus, cant help with the fatigue part. Only rest seems to work for me!. Just wanted to ask if you are going to the support group in Vienna. Hard to tell who's who with the names here! Cindy
Posted by cactus (Member # 7347) on :
Hi Cindy,
You mean you don't have a magical fatigue cure? ...Bummer.
I've tried to make it to the support group in Vienna a few times - never seem to feel up to it (I live pretty far out 66)... One of these days I'll get there!
Take care, Cactus
Posted by bejoy (Member # 11129) on :
One more helper: B12 sublingual.
You can get a liquid or take sublingual "dots".
I understand that you should always take individual B's with a B complex. I do best when I take a B50 complex in am and afternoon.
Please, please take a nap for me!!! Posted by TerryK (Member # 8552) on :
One of the few things that made a difference for me was malic acid.
http://www.webshopemporium.com/MalicAcid.htm Malic Acid and Energy Malic Acid has an oxygen sparing effect and there are a number of indications that Malic Acid allows the body to produce ATP even under low oxygen (hypoxic) conditions. Malate, a molecule that contains Malic Acid falls significantly in concentration during exhaustive physical activity. By supplementing Malic Acid in the diet, flexibility to use aerobic and anaerobic energy sources can be enhanced and energy production can be boosted.
Terry
Posted by cactus (Member # 7347) on :
Hey bejoy, the next nap has your name on it
B-12 sublingual? Cool, thanks. I usually have injections but have been out for awhile, can't make the drive to the compounding pharmacy till next week. Hmmmm, wonder if that's part of why I'm so sleeeepy...
zzzzzzzzzzzzz, Cactus
Posted by cactus (Member # 7347) on :
Thanks to you, too, Terry - I'll check out the Malic Acid link as well.
My 3 year old is grateful for all this great info as well - anything to get his mommy out of bed and functioning again.
Posted by ESG (Member # 4816) on :
you have a 3 yr. old? Here I am to encourage you: I am a single mom and when I was so sick I spent most of the day on the sofa ... I was still a single mom, very alone. I have 2 kids, one with Asperger's and one with ADHD.
I taught my kids to watch TV & had to subscribe to Cable to get Cartoon Network & Animal Planet; we no longer went for daily walks or off on adventures; I had to stop taking my daughter to gymnastics. Thank goodness they soon started school & the bus stopped right outside our front door! I got them on the bus and collapsed on the sofa.
I had to find people to drive my kids or myself to doctor appointments; a friend occasionally shopped for food for me when she did her weekly shopping.
It may seem like you will never get beyond this, and you may think you cannot cope, but you can - you really can! In fact, your 3 year old will help you find strength.
ESG
Posted by k-lyme (Member # 5574) on :
Have you tried Provigil? It is a great medication for severe fatigue. The way it works is that it is kinda like legal speed for your brain and gets more blood up to your brain and more function occuring. It is a triplicate prescription (Thats what they call controlled substance prescriptions in CA), so you might have a harder time getting it if you don't have a GP that has the special license.
Take Care!
K-lyme
Posted by cactus (Member # 7347) on :
ESG, thank you so much for the encouragement! I need it so badly sometimes, esp lately. Helps to hear that you survived it, and your kids did, too.
There are days I cringe to think of the TV use in our household - but we're surviving, thanks in large part to help from family members (who take turns staying with us to help with our little one, shop, etc). Managing alone is a feat - you're amazing.
Sometimes the only thing that keeps me in treatment is my little guy... and knowing that it will be worth it when we can go off on our adventures again.
K-lyme, provigil has worked well for me, but I've been frightened off of it recently. According to the literature, it shouldn't be used if one has Mitral Valve Prolapse Syndrome (I do have an MVP). I'm trying to hold off on it until I verify it with my LLMD in a few weeks.
Healing thoughts to all...
Posted by breathwork (Member # 567) on :
After ten years of all this nonsense I've found something that actually helps me get through the day, or the parts of it that I'm awake for...
It's called ZipFizz.
There are several ZipFizz products. The one that I use is the energy drink mix. It's a powder that comes in a little plastic tube. You pour it into a bottle of water and drink it. Do not use carbonated water or it will explode like Mentos and Diet Coke!
There is very little sugar and a low level or stimulants like caffeine..
The magic ingredient is a huge dose of B12.
I have shown the product to Dr. S and my endocrinologist and both have said it looks fine to them.
You can purchase it online in several places. The least expensive spot is Costco online. The citrus flavor is the best.
Costco used to carry it in their stores, but the newer ZipFizz products have taken their shelf space in the stores. The newer products are more like the usual energy drinks with lots of stimulants and sugars.
The effect is one of highened energy and clarity, without the rush of sugars or agitation of caffeine. No rush and no crash....just a general rise in energy levels that tapers off gently.
I order it by the case since I have two teens with lyme and a husband with cancer who likes its effects.
It costs $25 per box online with Costco. The next cheapest price I've found online is $35. There are twenty little tubes in each box.
I used Provigil in the past and it was too edgy for me.
I hope this of help!
Carol Ann
Posted by ibrakeforticks (Member # 6785) on :
CoQ10 and D-Ribose help me with energy.
Also NADH, 10 mg empty stomach a.m. and afternoon. In the past this didn't help me, but I have tried it again recently, and can see an increase in productivity. I'm thinking maybe some of the other things I'm taking are helping it work this time--folinic acid maybe...
Posted by cactus (Member # 7347) on :
Carol Ann, thanks for the tip about Zipfizz - if it's at Costco online, even better... I'll check that out as well. Love the tip about which one tastes best, too!
Oh, CoQ10, thanks for the reminder ibrakeforticks... it's been a while since I've taken that (was on babs treatment & avoiding it due to interactions) but I might pull that one out again. And your other suggestions look good, too!
Have ordered a few of the suggestions, and will try one at a time so this doesn't become too confusing... Will keep you all posted on the results!
Hoping for a few productive hours today... and sending healing thoughts to all, Cactus
Posted by Lymetoo (Member # 743) on :
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by cactus: ...will try one at a time so this doesn't become too confusing...
Cactus, Some of these supplements work synergistically. That is, they work better when taken together.
I just read "The Sinatra Solution" and Dr. Stephen Sinatra recommends several supplements taken together for fatigue.
multivitamin fish oil magnesium Coenzyme Q10 (water soluble) L-carnitine D-ribose
So, trying each one individually may not do as much good for the fatigue.
Carol
Posted by Vermont_Lymie (Member # 9780) on :
Something that works great for fatigue is exercise.
I have to take naps if I miss doing some exercise during the day.
Posted by cactus (Member # 7347) on :
Hi Carol - whew, my head is spinning right about now - and so is my Medicine Cabinet Wheel of Fortune!
Thanks for the list from the Sinatra book, that's a good resource. And, a very good point about these things working synergistically.
I've been taking most of the supps on the Sinatra list, except CoQ10 and D-Ribose, so will continue to add in new ones every couple of days - will keep building it up slowly so they can all do their work together.
Hey, VT, I did get my hiney out for a short walk outside today - my big accomplishment! 'Course I still slept a lot, too...
Thanks, everyone for all the help on this. A couple months ago I was battling insomnia, but now I'm thinking the fatigue is much more debilitating.
Vibrant, energetic wishes for all, Cactus, who is off to spin the Medicine Cabinet Wheel
Posted by trueblue (Member # 7348) on :
Hi Cactus
I haven't got any bright ideas. I know Babesia treatment makes me tireder than anything ever has before. Naps have become manditory.
I'm just sitting here laughing about the "Medicine Cabinet Wheel of Fortune!" I shouldn't laugh mine's taking over my world; might as well take a spin.
I hope the energy fairy waves her wand in your direction soon!
Posted by breathwork (Member # 567) on :
Between all of my lyme meds and supplements and my husbands list of meds and supplements for fighting cancer, our large bathroom counter is covered in bottle of pills....We look like an elderly couple with all of our drugs and supplements! Yikes!
Carol Ann
Posted by clpgotlyme (Member # 7875) on :
Cactus, Hope to see you at the support group soon. Maybe if you try all the ideas, you'll get such a burst of energy that you can make it to the meeting!
The last two times I really didnt want to go, but I made myself. I felt much less depressed both times. The people there are a great help. Cindy
Posted by cactus (Member # 7347) on :
Hi Trueblue! Good to see you!
Carol Ann, yep, my overflowing medicine cabinet makes me look like an elderly person too - that or a legal version of (gasp) Anna Nicole...
Cindy, will you let me know when the next meeting is coming up? I'll try to get there, I'm sure it will be a good experience.
Ok, this is my update - have added some supps & I do seem to be feeling less fatigued, so that's good.
A non-lymie friend sent me this link for caffeinated soap, which made me laugh so I thought I'd share it with y'all... hope the link works.
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