Exhausted, exhausted, exhausted . . . I'm

[jean48]

so tired of it. I'm taking Plaqunil but it doesn't seem to help. Anyone have any other ideas? We are going to Disneyland in October and I'm going to need more pep and energy.

Jean

[MaryF Administrator]

Hello there, my own experiences not to hot with plaquenil.... however on the other hand my daughter is now well into 6th month, and her tiredness is definitely better. She does also take Q10 which has also helped, the full dose allowed! Hope this is helpful. Mary F x

[jean48 in reply to MaryF]

Thanks Mary

[CanaryDiamond10]

HI Jean: I took a 6-month Plaquenil trial and found no change at all. But there are others at this site whom it has helped and some whom have taken it a long time wiih success. It's just not effective for me. Perhaps is isn't effective for you either. Did it change any other symptoms? I was hoping for bone/muscle pain relief. Maybe a little help with "brain fog". But not for me. Tired is a common symptom for almost every APS warrior I've read on this site. Sometimes sleep is so overpowering I fall asleep in the middle of mundane things, like doing the dishes. There am I, hands in water, standing, and sound asleep. Usually, one of my pets touches me to wake me. I have to pick and choose my times to do things. As far as relief, I just assumed it was accredited to the disease and when I mention the overpoweringness (I don't even know if that is a word) of it to my rheumatologist, I get the "live with it look". I get the "live with it look" alot. That fact is, the current medical field has nothing to offer at this time and we are the trial for many new medications on the market.

As far as Disneyland, plan carefully. My nephew just returned with his 3 and 5 year old princesses. They have such a magnificent service excellence program there, you can call ahead ask for your own concierge. Explain your disease and your unfortunate symptom. They will have those kids booked so solid that you can either steal some time with your wife for yourself, go to slumberland in the hotel for cat naps (very effective I understand) or watch your kids with sunglasses so if you accidentally fall asleep they will never know. You could expain your plight to your MD, but I can't imagine him prescribing something to stay awake on vacation. Even if it is a symptom. I wish I had better suggestions for you, and if you get other input which is more fruitful, please let me know. This is a symptom that has interrupted my life for so many years that my zest for the quest is gone. I'm too tired.

There is a lot of positive information with regard to the value of "cat napping" out there. Just put "sleep" into google. Also, make sure your sugar is replenished around 3:00 pm. Many people get a little boost from a candy bar, cookies. Also, a little cool shower to refreshen works wonders and only takes 20 monutes. Just remember everything in moderation.

Have a wonderful vacation in Disneyland. I have never heard of a disappointed child of any age. Parents for that matter as well.

[Hidden]

CQ10 is a cougulant and should not be taken with APS unless specifically directed to do so by the doctor.

[MaryF Administrator in reply to Hidden]

OK'ed with both all I am involved with, but i do not take anything other than a good dose of aspirin twice a day as directed by the right people! Hope this helps. Mary F x

[Hidden in reply to MaryF]

But Jean is on coumadin and should be aware of the potential clotting effects caused by CQ10.

[MaryF Administrator in reply to Hidden]

Thanks for this, I believe that also Lynn takes similar, useful to look into this, it may be just suitable for those not on specific drugs, all I know is that so far, i have not been advised either for myself or daughter to stop this, by any of the three hospitals involved, thanks for your interest, all very useful. Mary F x

[MaryF Administrator in reply to Hidden]

I have found this. which mentions Q10 and the effects you mention JimQ umm.edu/altmed/articles/coe...

I certainly checked before embarking on it both for myself and daughter on our particular drugs! Mary F x

[Gadgets]

Hi I find that fatigue comes in waves least when you expect it. If you over do things it will get you back! I also said Plaquenil makes no difference but was told by my Reumy that I would feel like I had been hit by a train if I came off it.

Drink plenty of water, keep hydrated, rest as much as you can and get your blood thiness right will also help (it does for me Warfarin INR 4 to 5)

We are all still waiting for the magic cure to this illness.

Good luck, enjoy Disney and say Hi to Micky Mouse for me!

Garry

[jean48 in reply to Gadgets]

Thanks so much - Jean

[Leigha]

Hi Jean,

I'm not on the med you are on but just thought would throw this question out: has your thyroid been checked, have your adrenals been checked?? Was your energy fine before the Plaqunil? I was on Heperin for a short time and my energy just went down the tubes. But I also am on both thyroid and cortisone medication as both those are under active and I feel, especially the adrenals, are undertreated. It is a problem have seen with those of us with APS. Just an idea, not trying to complicate things.

Good luck and hope you can enjoy the vacation!!!

[jean48 in reply to Leigha]

My thyroid has been checked but not the adrenals. What kind of test would I need for this?

Jean

[Leigha]

Very interesting. I can't take a traditional blood thinner, but do take nattokinase which does also thin the blood. I must watch my vitamin K. I also take co-Q-10 and had no idea it was a coagulant.

Found this site, after the U of Maryland one Mary listed. It discusses and explains in depth more on the Q issue, if anyone is interested:

en.allexperts.com/q/Nutriti...

[Hidden]

Everybody should remember:

The dangerous effects of statins are just starting to leak out as independent studies are being done. Statins can cause all sorts of symptoms including muscle pain and muscle weakness (neuropathy) as the muscle seperate from the bones; various nueological symptoms including memory loss, dissyness, headache, muscle inflamation, fatigue and numerous other side effects. Many which are wrongly blamed on APS.

statineffects.com/info/adve...

[jean48 in reply to Hidden]

Statins are for blood pressure right. I'm taking a very low dose.

[Hidden in reply to jean48]

Statins are for cholesterol. Even a low dose of statins can effect you.

[Leigha]

Hi Jean,

There is not a simple test for the adrenals because ones cortisol levels fluctuate so much during the day. I was put on very low dose cortisone (cortef), not the synthetic prednisone, of 5 mg., and my life literally changed. That is what told my internist I needed it. I now take more than than, in 3 divided doses, but still very low. The danger comes when one takes high dosing.

Talk to your physician and see what they do and how they handle it; each doctor seems to have their own viewpoint on this as much is still being learned. I am just so thankful as it changed my life, although fatigue is still an issue as have chronic fatigue syndrome also - but at least am able to move about now!!

Best of luck!!

[hasmoxie2]

You are pretty safe if you are on Fragmin. You are more protected. You should take CoQ 10 if on a statin!

[daisy11]

my daughter very tired like me, both take Hydroxychloroquine, have had blood tests done, been given ferritan. Read that Hydroxy causes tiredness so now she takes it evening and touch wood, she has not been enduring the tiredness like she has, during the day. We thought it was A levels exams stress! she seems to have perked up on that area. However I am tired because of very very low ferritan, my daughters was bottom end of scale.

Hard work isnt it

[jean48]

Thanks Daisy that is very interesting. I may try that!

Jean

[Hidden]

Hi Jean.....I have been taking Plaquenil for 2.5 yrs...felt dreadful prior to this.....I find that if I get over tired....stressed...etc....I feel so weak the next day I can hardly walk....if I sleep.rest, and drink lots of Orange juice....(I have no appetite when I have this 'flareup') I recover in about 24hrs and feel great.....I'm am finding that if I am careful not to become exhausted; over heated, stressed I have fewer 'flareups'....haven't experienced one in 2 months....also

I take Ibuprofen daily as to prevent inflammation (unseen within my body)...and if I have been gardening or doing anything that could create an allergic reaction I take a Benadryl ..before any symptoms appear.....so Ibuprofen and Antihistamines are in my diet......my Rheumy says it can't hurt......I believe we have to monitor our own bodies on a daily basis given the unpredictable nature of the immune and allergic reactions

[jean48]

So you are not on a blood thiner?