The fatigue is disabling...

[Heather3418]

As many of you may know, I have been diagnosed with Relapsing/Remitting MS for 13 years now.  I have experienced fatigue over those years, but nothing like I have experienced over the past 3 1/2 weeks.  I need your advice.

I just came out of a 6-7 week flare up about a month ago.  I have been on Copaxone, going into my 7th month.  I am not depressed and have had no medication changes that would cause this kind of overwhelming fatigue.  I am not a candidate for Provigil, because of a propensity towards elevated blood pressure and occasional heartbeat irregularities.  At least this is what my doctor has said about Provigil.

I have never known fatigue to be a single symptom of another flare up starting, in my case.  This seemingly out of nowhere increase in fatigue, has me very puzzled; even being a veteran MS'er.  Any ideas Forum members?  All recent blood work fine, good recent health check-up, etc.  Nothing to explain this.

I would appreciate your thoughts and opinions.  Thanks ever so much.

Big Hugs, Group,
Heather  

[Quixotic1]

I subscribe to the Linus Pauling Institute of Micronutrient Research which is a part of the Oregon Health Sciences University.  They do absolutely impressive basic reasearch into micronutrients (Vitamins, co-Enzymes, anti-oxidants, etc)   They have stated in they most recent news letter that the max daily dose they can recommend of Vitamin D is 10,000 IU per day.

My ongoing question is whether you should lower your calcium supplementation at the very high doses, and it appears that you should, but I cannot find any substantiated recommendations on this.  Certainly, anytime you take Vit D you should take some calcium to prevent it from being taken from your bones.

I am taking 6000 IU daily and limiting my calcium supplementation to about 750mg per day.

Testimonial alert :)  I think I am feeling better since I pushed the Vit D dose up.  Other things have also gone on, but something is helping me feel better.

Quix

[Momzilla]

Hey, Heather~

I'm sorry you're feeling so rotten with fatigue.  HATE that!  You may remember that fatigue was the first symptom I had with my last "complex migraine episode."  That's what my doc calls it, but I think it's MS.  I had severe fatigue for about a month before my legs and arm finally gave out in an acute attack.  And then the fatigue lingered until just a while ago.  Maybe you are in the 'post-attack' phase.

I always have fatigue, but not the debilitating kind like that which preceded my attack.  I take Provigil, and it helps me a bit.  It certainly helps me get through the day, as long as I remember to not overdo.

And -- this is just a testimonial, or "hearsay," but Cosmobirdy tried Ritalin for a long time with success for fatigue and mental accuity.  I think after a while, the effects dwindled, but it really helped her immensely for a time.  I think she still takes it.  And her fatigue was unbelievable.  

Good luck and let us know how you're doing!

Feel better, Hugs,

Zilla*

[jensequitur]

Heather, I know that right after a flare, I'm really sensitive to heat, and have problems with fatigue.  It takes me a couple of months to start feeling more like myself.  Who knows!  Try the vitamins, it couldn't hurt.

[Heather3418]

Thank you so much for that info.  My rheumy just put me on B-6 about a month ago for inflammation.  She said it helps.

I guess I will get with the doctor about Vitmain D.

Thanks again.  Hugs to you and Craig..

Heather

[monotreme]

Hi Heather,
   Craig takes 15,000 units a day.  I take 10,000 units a day.   Recent studies have shown that 10,000 units per day is safe in those with low vitamin D3.

  I would ask for a prescription for a serum D3 level so you know where you are starting from.  In MS, you should aim for a blood level of at least 50.  Once Craig's level got above 50, he felt significantly better.  

  My level was only 12.5.  I have autoimmune thyroid disease.  If you are healthy, and your level is at least 30 in the blood, 2,000 units per day is good.  However, if you have autoimmune disease you should be at a higher daily dose.

  A recent study was also released that said that 2,000 units per day is safe in children ages 12-18.  So I would recommend getting a serum level and go from there.  But 2,000 units is a minimum dose to start with at least.

  I hope it helps.  

  Elaine

[cjacks]

Hi Heather

I take 2,000 iu of vit D per day . I think this is a good safe high level for any one who has had low D in the past.       For the energy I take  D-Ribose . It works some and of course if I took it the way my D.O. prescribed it would see much better results .  I take lots of supplements and have to cut back somewhere  because I have to pay for them myself ..  ouch !  

Good luck

Jo

[spastic]

Hey Sweetie, I take 1000 i.u's a day and then one day a week I take 5000 i.u.'s.  I have heard you can take more than that, Elaine can fill you in on what is safe to take.  I am told I will be able to link up in my room, I'm hoping so anyway.  

Love Ya,

Ada

[Heather3418]

Thank you so much for all your ideas.  I will take them all into consideration.  I am sure that the heat plays a role, but have tried to stay inside more and not overexert myself, like I usually do. (in my garden Maggie!)

The Vitamin D is a consideration also.  I have recently been put on a 100mg. dose of daily B-6 by my Rheumy.  Helps with arthritic like conditions, I am told.  For those of you that take Vitamin D, what is the daily dosage you take?

I will drop my Neuro a note today, to she what she thinks this may be.  It's dangerous in my opinion to chalk everything up to MS.  Although it's a great suspect in this instance.

Thanks again for your well wishes and as always, your help.

Big Hugs,
Heather

[LLWB]

Heh Girl,
I have been worrying about you, and now I know why. I've missed your wonderful, caring answers to posters, and your welcoming words. I too am wondering if your flair is not over as you thought it was. Have you been doing too much in your wonderful flower garden and ponds?

I talked to my PCP about Provigil, and he told me it was very expensive, hard to get insurance to cover it. He started me on a medication called Bontril. Very cheap, and so far for me it has worked wonders. I'm much more alert, able to get things done, and not feel like I'm trying to walk while weighted down by concrete. I don't know if that would be an option for you, you might check it out. I helped a friend move this weekend, and I know without it I wouldn't have been able to do a quarter of what I did.

I will pray that this goes away soon, and you will be back to your old self..

Hugs & Prayers        Maggie

[monotreme]

I am sorry to hear of your unrelenting fatigue  Heather.  The only thing I have to add is how is your vitamin B12 level?  I have had a huge amount of energy since going on high dose of Vitamin D3 and weekly B12 injections.

Again, a testimonial to something that worked for me.  

I hope you can find something that helps.

Elaine

[doni54]

I don't have any advice for you, but I am sorry that you are having to deal with this.  Like Rena, our weather has been extremely HOT and my fatigue has been unbearable.

My thoughts and prayers are with you.

Hugs
doni

[spastic]

Hey Sweetie, I am so sorry you are dealing with this fatigue.  The only thing I can do is wish it away from you.  I get the horrible fatigue when my fevers are raging and the only thing I can do is lay down and take a nap.  Sweetie, I hope this lets up for you, I am thinking of you, my Dear Sweetheart.

Love You Bunches,

Ada

[Quixotic1]

The Provigil stabilizes my vertigo somewhat.  It just demonstrates that there are many causes of vertigo.  Q

[Want to feel well!!!]

So sorry you are feeling so fatigued.  No advice here, just some well wishes for you.

If it this helps, so you might not feel you are missing out on the wonders of Provigil, I had taken it for a short while and it was not helpful.  Actually it made things worse after a bit...it was not a good mix with the vertigo.

Let's hope you find a reasonable answer for this fatigue. :(

((HUGS))
Wanna

[Rena705]

What sort of heat have you been dealing with my dear?  I have been finding with the heat wave we just dealt with that my fatigue has increased a lot and that I am sleeping in until 10:30 to 11;00 a.m. every day although normally one wouldn't be able to sleep due to the heat!
We are having a storm with lots of thunder and lightening right now and it is cooling off great but once the sun comes out again the heat and humidity are going to knock me down again!

Do you think the heat may be affecting you?

Rena

[Quixotic1]

I'm so sorry to hear that the fatigue is not relenting.  I was going to suggest a concerted effort to look for infection, but if you have had a CBC and a UA then that has been done.  There is no reason that fatigue can't stand alone as the symptom of a flare.

Is fatigue ever a side effect of Copaxone?

Thyroid is okay?  Vit D okay?

As you know crushing fatigue has been my constant companion first with the vertigo from 2001, then doubled when the MS reared its head.  I do take Provigil, but it doesn't make me feel better.  It just allows me enough energy to get up and do things, like psot on the  forum.

I recently have been tested for thyroid, Vit D and testosterone.  I had the testing for testosterone done because back about 15 years ago we were searching for a cause of my loss of libido.  Libido in women is somewhat tied to "T" I had read.  All women produce some and it should even be present in low levels in post-menopausal women.  Mine was nonexistent.  I took an estrogen/testosterone combo for many years and it did make me more energetic in all aspects of my life.  My newest level was also non-detectable and I am going to request to be back on the hormone combination.

Also, since I have been on the high doses of Vitamin D I have felt more energetic and more alert.  This has coincided with going off Ambien, though.  I tend to feel it is more the Vit D that is affecting my increased sense of well being.  I'm getting out and visiting people and even considering writing that book - Amazing, since just a few months ago, Elaine urged me to write a book and I shut her down fast becasue of my fatigue.

Now what I just said was a "testimonial" for testosterone and for Vit D.  I have no evidence that testosterone could really be at the root of my problem.  There is some evidence that Vit D does help with some symptoms of MS.  And growing scientific evidence that Vit D is part of the problem in causing MS.

I offer these as thoughts since you have looked at the usual suspects and can't find an answer.  I do hope you find an answer though.

Quix

[sllowe]

Hey Heather Gal!

Maybe that flare was never over?  You know I'm a rookie, but thinking even w/your lengthy history w/this madness, maybe it's just a variation of how they typically end.

Or, are you thinking there is a possibility this is not MS related since it's so out of the ordinary for you?

Hugs,
Shelly