I've never heard of "ferritin". Hmmm ... I'll ask for that too.
Ask them to run a ferritin level too. It relates to iron stores and can be very low even when the blood count looks fine.
Hope getting back to the CPAP helps. Even as I wrote I realized I've fallen asleep without it for two or three nights. I'm feeling it today.
Mary
My Vitamin D was low when I was first diagnosed (a year ago) so now I take a supplement daily.
Not sure about my iron levels. I'll have to have that checked. Good idea.
How are your vitamin D and iron levels?
Yep, I forgot to mention that I also have sleep apnea and I use a CPAP. Well, I'm supposed to anyway. I haven't been -- I hang my head in shame.
I will start again tonight!
Have you ever been checked for a sleep disorder Jean? I believe it is more common in PwMS than the general population (and it is not uncommon in general). Do you know if you snore? Prefer to sleep on your stomach?
I started to investigate sleep apnea when I had to slap myself awake on the way to work and had to work hard to keep my thought processes functioning once I was there. I was napping several hours during the day and sometimes felt like I slept soundly 8-10 hours each night. I never awoke rested though. This was a couple of years before my official MS diagnosis came.
I was diagnosed with sleep apnea and started to use a CPAP machine. Some people get an instant improvement. It helped me but the improvement was gradual over weeks to months. When I needed more, my PCP felt at a loss and ordered an antidepressant. Luckily, I had an appointment with the 'sleep doctor' two days later. When he heard my complaints he offered a plan 'B' (if plan 'A' didn't work) because he thought sometimes sleep deprivation has occurred for so long it takes more to break the hold it has.
Plan 'B' was Provigil. Since my mouth was already as dry as a cotton ball from the initial dose of antidepressant and nobody really thought I was depressed anyway, plan 'B' moved into the 'A' position. It helped quite a bit. It doesn't give me huge energy. It just keeps me awake.
I've switched to Nuvigil now as it works better for me. I need the combo of drug and CPAP to feel like my new normal. If I skip either one for more than a day or two I start to feel my eyes droop and my thought process slow. It reminds me I'm treating rather than curing this problem.
I can't say for sure if my fatigue comes from sleep apnea or MS (or maybe even a little anemia on the side). Most times I'm not even interested in sorting it out. I'm just glad to have found a combo that works for the moment. I hope it continues to work long term.
I hope you can find something that will work for you, especially something that doesn't break the bank.
Mary
Thanks for all the leads so far.
For background, I do have a thyroid problem and I'm taking Synthroid for that. In the past I've had low levels of B, so I take B12 also. For quite a while (much prior to being diagnosed with MS), I have been on Paxil for depression. I have epilepsy and take 2 epi meds that can have a side effect of fatigue. So there is a lot going on that might be contributing to fatigue.
I just found this information also:
http://www.msfocus.org/article-details.aspx?articleID=48
Thanks for all the help!
The entire edition of MS Focus this last time was on Fatigue........ you can read it online at
http://virtual.angstromgraphics.com/publication/?i=61865
They are also the organization that is sponsoring the teleconference on Monday/tuesday this week about ways to use PT to live better with MS.
There is also the teleconference on Wednesday/Thursday from Shared Solutions on fatigue.
I hope you find some tips that are of use to you. Lulu
Jean, also make sure your thyroid function is optimal.
Nuvigil is just a newer version of Provigil, made by the same manufacturer. Possibly it will help where Provigil won't, I don't know.
Amantadine is an anti-viral, but was found by accident to be helpful for MS fatigue in some people. It has a low side-effect profile and it's inexpensive.
Neither Provigil nor Amantadine has helped me, unfortunately. Now my nurse practitioner is suggesting Ampyra, a newer drug that is meant to enhance walking ability but has helped some people with energy effects. It's very expensive and probably will be a hassle to get through my insurance, but I guess is worth trying.
None of the 'natural' approaches has a good track record in terms of fatigue. You might try B12, though, if yours is low. That could make a difference.
ess
I also have horrible fatigue. I just found out about Provagil from my doctor, but he told me to look up Nuvigil, I guess it is made by the makers of Provagil and it works a little differently. It might be worth looking into.
Some people have said that Ritalin and Adderal have worked for them, but I can't take either of those.
@Lisa: Thanks for the teleconference link: I will try to check it out.
Amy
Dear Jean
I'm sorry that you're going through this awful, dreadful fatigue. I can relate because for the past 10+ months I've been dealing with extreme, extreme fatigue. (not just "tired). I was going to ask my primary doctor to order me provigil myself so I could go back to work, but now reading your post saying that it didn't last long -- I wonder.
I know there's going to be a teleconference on MS Fatigue next week. Here's the link:
http://www.medhelp.org/posts/Multiple-Sclerosis/Teleconference---3-21-and-3-22---Strategies-for-MS/show/1484184
You can dial in and listen and they also answer questions too from what I've read.
Again, I'm sorry for what you're going through -- I have yet to do anything in regard to my fatigue because it is so debilitating that I can't even work.
Please let us know how you're doing.
Lisa