fatigue, gluten, Rebif questions

[bammaw]

Okay, I've tried going gluten and/or dairy free on and off in the past with success in feeling better and having my "gut" issues settle down. Because I have "food issues"...struggled with weight all my adult life...at 62 it's hard to change lifetime habits/cravings...I find myself reverting to the old ways of eating and of course with not so good results.

So, with intestinal (IBS) symptoms and lots of aches etc and tons of fatigue I realized it was time once again to address the eating. Been GF for a week now but unlike times past I'm not getting the immediate improvement in symptoms. I have had several months of above normal fatigue, increasingly so. Have a new neuro and will be changing from Rebif to Copaxone (some increase in lesions = progession) soon (rejected by ins co for Gilenya until I try Copaxone and "fail"). Also, found a B-12 deficiency so taking injections weekly for a few months. Levels aren't rising as quickly as he wants. The fatigue continues despite the B-12, resting when I can, and trying gluten free again.

I am probably not making a whole lot of sense...which is the way I'm thinking and communicating lately. Told my husband today I think I'll just stop talking since I'm having brain fade and not getting my thoughts out of my mouth correctly. Sigh...

Guess what I'm wondering is:

1) is this the MS fatigue that people talk about

2) could the Rebif contribute to the fatigue...think I'm having antibody issues with it per lab work

3) can it be dietary and I just need more time on the gluten free diet this time.

I'm just so tired...still functioning but don't want to do anything or go anywhere...becoming antisocial which is sooo not me. I ache all over...hard to describe. Sorry I'm whining so much. I really am feeling just overall crappy (oops can I say that word here?) This is a bother cuz I've got stuff to do and people to take care of.

Thanks for "listening" and for any feedback you give. You are all so terrific and I am blessed to have the resource of this forum.

[nosrepmodnar]

Quanked!

An old retired word that I use often.
MS Fatigue as I understand is just a general lassitude without reason, not undersleeping or overworking, you just do not have any energy.

I get this as II warm up, if the house is not cool enough I will be tired from the moment I wake up until I go to bed and yes this does cause logical issues for me. I cannot get my point across and people have difficulty making sense of what I am saying. For me it improves when I cool down, there are entire days that I have "lost" this way.

I am currently on Rebif, the only things I have had from it are the calloused stomach and very infrequently I get the flu like shakes after an injection.

Diet wise I found a great difference in my general energy levels and how I feel when I stopped all starch (gluten free, plus no rice or "gluten-free" retail products which are usually just rice flour, corn-starch or soy flour, I also do not eat much potato or rice) and limit my dairy. I was an ice cream freak and ate that daily. I know will have some occasionally as a treat, removed most cheese and I never drank milk in the first place.

Do I think it helps with MS? Not sure, but losing weight and feeling better sure helps my attitude.
I don't foresee anything creating a recovery of lost abilities, that requires genetic rebuilding, but new problem cessation would be great!

I have a weak right side and cannot walk well with that leg.
I have done rehabilitation therapy, and it works better when I do my exercises, but unless something can fix the myelin in my spine that will never recover completely, same for my optic neuritis.

There are drugs that will help a little with the tiredness, I was on one for a couple years but it has been so long that I cannot recall the name, but it didn't relieve me from it, just brought me to a level where I could mostly function. I mainly try to stay cool to stay functional now.

[bammaw]

Quanked ...what a great word. Thank you for the input. It is appreciated.

[nosrepmodnar]

Just don't read the urban dictionary definition.
I love the word and still educate people on the definition

[bammaw]

ha ha ha...it was well used here but I don't think I'll find it's definition in Webster's 1828 Dictionary of the English Language. Do you? Heh

[nosrepmodnar]

I bought a book of forgotten english words, it is in there

[bammaw]

Now that sounds like it would be interesting. A book for a good laugh is "Anguished English". Don't remember the author or who put it together though. I remember laughing a lot with that one.