The purpose of this blog is to keep track of my illness and progress. If someone else can benefit in any way from my rambling, even better.

Thursday, May 31, 2012

Can Vitamins Help?

Now 4+ months into the guaifenesin treatment, I'm still seeing progress but the past few weeks have been difficult to read. I cannot tell if I am blocking again or just plateauing in this stage of headaches, joint pain and fatigue. It would make sense that this cycle would last the longest since these are the symptoms I have had for the longest amount of time, but I plan to double up my dosage one night just to be sure I'm not blocking--I just haven't had the guts to do it and forfeit my sleep yet.

In the meantime, I have heard some potentially helpful advice about vitamins and their benefit to people who have fibromyalgia. From what I have read, it sounds like most people with fibromyalgia are deficient in at least one vitamin/mineral-I know that I'm low in vitamin D and anemic in iron even with supplements. Instead of trying all of the following at once, I am introducing them one at a time for about two weeks to see if there is any noticeable improvement. If I've learned anything it's not to make a bunch of changes at once, if something works you'll have no idea which one it is. Here's my "to try" list:

1. Vitamin E: I've heard this will help some people with fibromyalgia a little bit and some a lot, you just have to try it and see if it's a good one for you. I've already introduced it and haven't noticed any significant improvement so will likely not continue when the bottle runs out.

2. Iron: I was shocked to find out that 1 out of every 3 women is iron deficient. This can cause your fatigue to be even worse than it already is. Even after being on a heavy-duty prescription iron supplement my levels are still low. Now I'm looking into foods that are iron rich (eating meat and beans at the same time). Eating vitamin C at the same time will increase absorption, calcium will block absorption, so orange juice with a meal is great but like my chiropractor pointed out-drinking the calcium fortified kind will negate any effects. Also, cooking in a cast iron pan increases the amount of iron you get in your foods as well. I will be trying all of these since fatigue really is my least favorite part.

3. Magnesium + Malic Acid: I don't know the science behind this one so you might want to look it up, but apparently the combination of the two taken daily for 8 weeks will help with muscle soreness and pain. Take 100-300 mg. of magnesium with 1,000-2,000 mg. of malic acid. I just started this one today and will let you know if I see any improvement, my muscle pain is horrible (though not anywhere near what it used to be before the guai) so this would bring much relief!

4. Protein Shakes: Again I don't know the science behind this one, but after speaking with another woman who has had fibromyalgia for 20+ years who attests to the significant improvement she saw after introducing these at breakfast time, I'm willing to try it!

5. Multi-Vitamin: If you aren't sure what you are low in this is a good way to boost everything.

*PLEASE REMEMBER to look for salicylates when purchasing vitamins! They are in a lot of vitamins and I had such a hard time that I finally just ordered mine all from Fibro Pharmacy's website (everything is sal-free) so I wouldn't take the chance of blocking again. Their prices were pretty good too, I think the vitamin E was only $4 for a 3 month supply.

I will post updates as I try things out and see or don't see results, please feel free to share your results, questions or anything else in the comments area below any of my posts.

Friday, May 18, 2012

Light At the End of the Tunnel?

Today is the third day of a cycle that has included burning arthritis-like pain in all of my joints and intense headaches and migraines regardless of how much water/rest/pain medication I take. The first day I kept thinking, "how could joint pain be coming back? It's been gone for months!" and then I realized that these were the first two symptoms I had when the fibromyalgia started. So if this guaifensin truly does reverse the process, as it seems to be doing, then I should be nearing the end of the terrible cycles of pain and close to home free! I know I will most likely never be pain free, but at least I can see the light at the end of the tunnel after 4 months.

On another note, I was lucky enough to meet a woman who has been living with fibromyalgia for 20+ years and she has found several things to be successful in taking away the pain and fatigue so I will do my best to pass those onto you as I'm trying them myself. A few quick tips from her:

  • Always eat breakfast, protein shakes worked great for giving her energy.
  • Take vitamins, obviously if you're going the guai route you'll need to be careful to avoid salicylates (I will be doing a post entirely on vitamins next)
  • Don't exercise after 5:00 and end your day at 7:00 regardless of how much is left on your "to do" list
  • If you can handle it get out and walk several times a week

This woman mentioned that she has met over 50 women with fibromyalgia and they have had two things in common: They have all had a type A personality and were stressed to the max and they have all experienced some kind of extra stress or stress-related event/injury in their life around the time their symptoms started. She gave me some great reminders to keep myself from worrying, trust that God is in control and let Him take care of it. Forget about how clean the house is and the four hundred things on your to do list. Live in the moment and take one day at a time, and most difficult for me-give up control. So I am doing my best to follow some wise words this week. God clearly put this wonderful woman in my life for a reason and I've learned the hard way to listen up when God's speaking or my hard-headedness will only bring me more frustration (and probably pain) and less peace in the long run.

Thursday, May 10, 2012

Being Vigilant

If you read my previous two posts, you know that I started taking a new iron pill that blocked my guai from working and it took me 41 days to figure out this was the connection. The reason why no red flags went up when my pharmacist told me it was an iron pill loaded with vitamins, was because the first time I read Dr. St. Amand's book I didn't make a mental note of what to look for in vitamins-because I wasn't taking any. I mentally skipped over the sentences that did not apply to me, not realizing that they could apply to me at some point in the future.

It has taken me a few weeks to get the vitamins out of my system and reverse back to the point where I was before this mistake, in effect pausing my treatment for two full months. As you can imagine on the good days it has been disappointing and on the bad days it has been downright depressing, the depression came in like a wave this time and I think was harder to handle because it was such a drastic change so quickly.

I have no re-read the chapter on how to avoid salicylates and I plan to re-read it every month or two in an effort to prevent something like this from happening again. I couldn't believe how many things I had just passed over the first time around. Also, it's a lot of information on which ingredients to avoid and I will likely need to read it a good dozen times before I can remember them all.

Lesson learned: be vigilant about checking ingredients and thinking through any changes. Getting comfortable and lax about what goes in/on my body is not worth the pain in the short term or the setback in the long term.