Daily journal

Sunday 7/29/07

Today was one of those bad fibro days. I woke up hurting bad all over and too tired to do much of anything. I wish someone would find a real cure for Fibromyalgia! I am so sick of seeing all these vitamin adds that say they can completely alleviate our symptoms for only about $100 a month. If there was a miracle cure we’d all be taking it because no one wants to suffer like this but there really is nothing that works- absolutely nothing! But some folks sure are getting rich trying to convince us that there is. If this were a man’s illness I bet there would already be a cure or at least we would know the cause. Guess I just have a bad attitude today. It is hard to have a good attitude when you are feeling this way again- for the millionth time in fifteen years. Maybe tomorrow will be better :)

Monday 7/30/07

I finally went to bed last night at 2:30 AM. I tried to go to bed at 10:00 but my legs were so restless, my skin was itchy, and my body hurt so badly all over that I just couldn’t rest. I finally took some hydrocodone and that helped after about an hour. I try to avoid taking that stuff but sometimes even my Tramadol and Skelaxin don’t help and I end up in a lot of pain. Anyway, today I am not in as much pain but I am weak and tired. My memory seems to be improving now that I am on the Pregnenolone and Namenda. I wish I felt like getting out and doing something with my son’s Troy & Tyler. I feel like I am a bad mom because I am not able to do many fun things with my kids. I am still waiting for a court date for my social security appeal- I have been in the appeal process for two years now. I haven’t been able to work in about four years and my husband is struggling to pay the bills. He has worked two jobs for a long time and he builds web sites too, but without me working we are still behind on bills. Even with insurance my medicine and doctor co-pays are adding up to a lot. I have been trying to help out by doing foster care but the stress is making me sicker and I am going to have to stop. And It is impossible to profit off of foster care, DSS barely gives you enough money to care for the children. I often end up spending more than I get. I have loved every child we have cared for but the system is very abusive toward foster parents. It is no wonder so many quit after a couple of years. The children always have a lot of problems and are difficult to car for. Many cannot or will not bond with their foster parents. I have given them my thirty day notice. No more for me. I have had enough.

7/31/07

Today I have no energy and I am kind of depressed. At least my pain is bearable today. I finally lost five pounds. I hope this means I will start taking off some of the weight my meds have caused me to gain. Weight loss has been very difficult because of not being able to tolerate much exercise. I have tried so many forms of exercise: yoga, walking, aerobics, physical therapy, etc. All of them seem to make my fibro worse. I have finally found something I can tolerate but it isn’t intense enough to support the kind of quick weight loss I want. What I am able to do is use ankle and wrist weights and just do toning exercises at a slow pace. I just sit on my bed and do leg raises and curls and butterflies- things like that. Sometimes if I will force my self to do them even when I feel bad I feel better afterwards. The good effects it only last for about three hours, but it’s worth it if I can loose weight too.

8/02/07

Last night I tried Rozerem for sleep. I never did really get sleepy but I think the Zantac I took may have interfered with the Rozerem. So I will try again tonight without the Zantac and see if there is a difference. I did notice, however that I woke up free of pain for the first time in months. As the day wore on I developed my usual aches and pains and now that it is night I am in a lot if pain. It painful even to go from standing to sitting. It hurts to sit down on the toilet or get into my car. It hurts to walk or stand or change positions. Today I was trimming my toe nails and noticed that the bottom of my feet had sheets of dead skin hanging from them. It was weird. I never noticed it before because I hardly ever look at the bottom of my feet. We have a lot of stress going on with our foster child and I can really feel it in my body. Stress seems to bring out my symptoms worse than anything. I can’t believe how much pain I am in when I do just normal things like move or change positions. I did try to walk today. I tried to swim yesterday and even moving my arms in the water was painful. I felt sore all over. I am going to be a part of a medical study that involves B vitamins and iodine. The theory is that it will reduce fibro pain. I really hope the theory is right because pain meds, even heavy ones, do little for my fibro pain. I go next week for my first visit. we’ll see how it goes.

8/5/07

Today I feel the worst I have in a long time. I had a lot of difficulty just going up three or four steps at church today. I am exhausted and my pain is through the roof. It hurts even to be touched. Shaking hands with people at church was incredibly painful. My feet are in a lot of pain. It hurts to even walk, especially without shoes. My mind is not working good. We stopped to get gas on the way to church and after church I asked my husband if we were going to stop and get gas before we came home. Where was I when we stopped for gas? I don’t remember it, yet I was sitting in the passenger seat. I am also getting confused easily. I am still not sleeping well at all.

8/07/07

Today I have terrible stomach cramps and painful diarrhea. My throat is really sore and I am sneezing and have a runny nose. I generally just do not feel good and my hands and feet hurt. For some reason my feet are peeling in big sheets. I cannot take any pain meds because I am going to be a part of a study using Iodine and B vitamins to improve fibro pain and tomorrow I will have some tests. Thank God I can go back on my meds after the tests!

10/10/07

Well my daily journal turned out to be not so daily lol!
This may be hard to believe but because of my memory deficit caused by fibro I actually forgot about having an online journal until a very nice person e-mailed me and commented on my fibro links. It is unbelievable sometimes how bad my memory can be it can cause me to be totally dysfunctional sometimes :( Anyway, let me fill you in on what has been going on with the whole fibro ordeal.

I’m not sure if I shared with you that I am in this fibro study and I am taking 100 mg of iodoral (iodine) and ATP Cofactor (B2 and B3 in high doses). Well, at first I was given only the iodine and I got much worse, more tired, my joints began to hurt and my muscles hurt more. Then, around the sixth week on only the Iodine I had one day when I didn’t take any pain meds. That night I realized, wow, I haven’t taken a single pain med. today (and I was on hydrocodone, and Tramadol every four hours)

So the next night I still had not needed pain meds and that night stretched into two weeks. Finally on the second week I was more active than usual (because I was feeling better) and I needed pain meds at the end of the day. That has only happened about three times since the first pain free day (which was about five weeks ago). So once I the doctor added the B vitamins it was maybe a week and I had more energy too.

So at this point I am waking up five mornings a week and taking my son to school by 7:45, then I go and walk briskly for 30-45 minutes depending on my energy level that day. I am only taking pain meds on a PRN basis and I had been taking them every four hours (and honestly I still had pain even with all the meds). I have not yet had a day where I woke up and said to myself “I just can’t do this” (and every day use to be that way).

Obviously, I am still really struggling with my memory and cognitive problems. I need a lot of support from my family to even complete simple tasks before I forget them. I am taking Namenda and it has helped me to feel like I’m not just lost and confused all of the time. It has helped a lot in that way, but I still just can’t hold a memory for longer than a few seconds.

I feel like my quality of life is so much better and I praise the Lord for that. I know that it is by His hand that my health is improving. He has always found a way to direct me to the right places at the right time and sent the right people to help me. I consider this improvement in my health a miracle and a huge advancement toward a good treatment for fibromyalgia.

I am doing SO much better but I am still struggling with some things. Most days now I feel like getting out and doing things, I feel good, and I watch other women my age out their working, building a career and I grieve because I know that is not a possibility for me because of the dysfunction with my memory and because my symptoms always flare when I get into a working situation. It’s just very hard to accept being disabled yet looking normal and really wanting to BE normal and do normal things. I am praying for a cure for Fibromyalgia for all the women, and men, and even children out their who have been stricken by this terrible illness. It is a thief, it steals the life, freedom, relationships and joy from people’s life. When I walk in the mornings, I think about Fibromyalgia as my enemy and when I don’t want to walk I think about how angry I am at this enemy and then I walk out the anger. I can walk for two miles sometimes before I am free from the anger and resentment toward fibromyalgia.

I feel like every day that I exercise and stay compliant with my healthy eating, sleeping and taking supplements, I am beating my enemy. When I feel a sudden phantom pain while I am walking I repeat this affirmation in my head: “God has given me a healthy, strong, whole body.” Many times the pain will disappear after repeating that a few times. I have hope for the first time in a long time that I can have freedom from this pain and fatigue that has held me hostage for many years.

10/15/07

I guess it is just the nature of this beast (Fibromyalgia), that it shows up uninvited without warning. After several weeks of feeling good, I have had two days of pure hellish pain. It started out in my lower back and I thought that maybe I had just over done it with too much activity, since I am use to very little. But then today I started getting extra sensitive to touch. It was difficult to drive my car because having the steering wheel touch the palm of my hand was very painful. It hurts to be touched at all. I noticed when I walked both yesterday and today that I had to walk much slower than usual. I am disappointed that I am still having periods of time when I feel very bad. I felt like the vitamins and the exercising was helping me until about two days ago. I am trying to remember if I have done anything different and the only thing I can pin point is that I have been eating more because my appetite has been huge but I am still eating mostly the same types of food. I did eat a candy bar yesterday, which I have been trying to avoid lately but surely one candy bar wouldn’t cause this much trouble!? I am sleeping well :) For some reason I have been having daytime sleepiness. Sometimes I can barely keep my eyes open. That is something new and I am hardly taking any meds right now so I know it isn’t that. It makes me wonder if my blood sugar is high or something. I’ll mention it to my doctor when I see him.

10/16/07

Mystery solved! This morning when I looked at my pill dispenser I realized that something didn’t look right, something was missing. So I went through all of my meds and realized that I forgot to put ATP Cofactor (B2 & B3 vitamins) in my dispenser. I noticed that my pill box was full with the exception of two days (Monday & Tuesday). Today is Wednesday so that means I filled the box on Sunday night and I didn’t take my B vitamins for two days. So I guess, in a way ,I just conducted an unofficial study with the ATP Cofactor and found out that it definitely helps me with pain and sensitivity to touch, and also energy levels (because I did notice that my brisk walks became not so brisk over the last two days). So I took it today and I’ll keep track of how long it will take for me to feel better.

10/18/07

Unbelievable! Today I feel great! Not so long ago (when I first started the Iodoral) I had a conversation with my husband and I said to him “ I wonder if I will ever have a day in my life when I can say, “I feel good”, because it has been years since I have had even one day when I could honestly say that.”

Today when I went walking I was able to walk 3 miles in 45 minutes and afterwards I felt invigorated, not washed out and achy like I use to when I attempted to exercise. And I noticed that it only took about a day back on the ATP Cofactor before I felt good again. This has proven to me that this regimine is the reason I am feeling better.

I have found that there are few side effects to the Iodoral and ATP Cofactor when they are taken together. The only things I have noticed are: weight gain (despite daily exercise) and dryer hair and skin. I actually have eczema on my neck right now and I think it is because my skin has been so dry lately.

The Iodoral alone had more side affects (abdominal cramps & rectal pain, increased fatigue at first, joint pain at first, and it also produced lactation). However, these symptoms all disappeared within a week of being on the ATP cofactor. It’s amazing though, how my entire life style has changed since I have been on this regimen. I wake up in the morning and am immediately active, I have made changes in my diet that would have been impossible before because of the fatigue, I am sleeping better (and making good sleep a priority), I cook food more often now and eat less take out, I go to church three times a week (before even getting there for Sunday service was difficult), I depend less on my husband and do my own errands more, I am more vigilant about my dental health...I could keep going, but you get the picture. I am really praying that this will be a lasting solution for my fatigue and pain. Next I would like to focus on getting a handle on this memory problem or at least learning how to work around it so that I can be functional again. To everyone out there with Fibromyalgia or Chronic Fatigue, you are always in my prayers. We are so close to a cure, don’t give up!

10/19/07

Feeling somewhat draggy today but otherwise doing okay.

10/20/07

Okay, today I made a big mistake and it really cost me. I know from experience that MSG makes my symptoms flare like crazy. I even look at every label when I buy food to make sure it has no MSG. I didn’t think to look at the label of raw meat. Normally MSG is in prepackaged food (it is a preservative). Anyway I woke up feeling pretty good. I even got up and made breakfast. Then within forty five minutes I felt like I had the flu and became very depressed feeling. My head felt like it was so heavy I could hardly hold it up. my arms were weak. I told my husband I wanted to feel better or die because I thought My symptoms were back and I was going to be sick all of the time again. So I’m laying in the bed on my left side and when I inhale my chest feels heavy, I almost feel short of breath. Then it dawned on me that I didn’t wake up feeling this way. I realized I must have eaten something for breakfast that either had MSG or some other chemical that caused this. So I muster up the energy to go to the freezer where I have a duplicate package of the sausage I cooked and guess what? MSG!!! So then I wasn’t so depressed because I realized that this has happened before and it usually last about three hours and then the symptoms fade away. It hits very hard about thirty or forty-five minutes after I’ve eaten MSG, but the next day I am always back to feeling okay. This makes me wonder if the reason I was a little dragy yesterday. It might of had to do with eating sausage at Burger King yesterday. After I ate I exercised and I read that the effects of MSG are lessened when you exercise just prior or after eating foods with MSG. I did feel bad just not as bad as today. Today I literally felt poisoned. I guess I’ll be doing some research to find out what all MSG is in because It is horrible when I accidentally eat it. I don’t want for this to happen again.

10/21/07

I was right. I do feel better today. I have done some research and found out that MSG can have many different names. I went to the grocery store and was shocked at how many foods I could not buy because they had some form of MSG. I was very impressed with Harris Teeter because they had quite a few selections of food that is natural and MSG free. I did read that you even have to check organic food labels because they could have a different form of MSG. So it took me two hours to buy $50 worth of groceries. But it is worth the extra effort and money to me if I don’t have to feel the way I did yesterday ever again.

11/02/07

The fibromyalgia study that I have been involved in ends next week. My energy level is higher and my pain is less than before I began the experimental regimen of Iodoral and ATP cofactor. I am still struggling with pretty serious memory deficits and now am dealing with IBS symptoms which started when I began the ATP cofactor. I have gained about ten pounds and am not happy about that but feel that the weight gain will taper off if I can lower the dosage of iodine once the study ends. So far it looks like one woman was not helped at all and gained weight, one woman was helped but still has symptoms with even a little bit of stress. I have been helped significantly with pain and fatigue but have flare ups of pain and fatigue when I eat MSG. My side effects were weight gain and IBS type symptoms. There are two other women who also participated in the study who I have not heard from. Whoever finds the cure for fibromyalgia will be a millionaire because so many people are afflicted with it and it interferes so much with our ability to function. I am looking forward to the day when a cure is found. It’s out there just waiting to be found.

11/13/07

The fibromyalgia study is over. The findings, in my case were that I had improvements in many areas: pain, fatigue, and I no longer have fibrocystic breasts. I learned that I have to be on 100 mg of the Iodoral with two of the ATP cofactors. When I reduced the iodine to 50 mg I felt awful again. I also learned that I cannot eat foods with MSG or BHT because my symptoms flare incredibly about 30 minutes after ingestion of food with those chemicals in it, and the flare lasts for four hours. I found out that the side effects for me are: weight gain, IBS type symptoms, menstrual pain. I learned that I have to walk briskly at least three days a week to feel well and that I feel better when I drink vitamin water instead of soda. I learned that I feel much better when I cut way down on processed foods and foods with a lot of chemicals/ preservatives.

My doctor has put me on a high powered vitamin to try and help me loose the weight I gained during the study. So far it has helped reduce food cravings.

Because the Iodine did not seem to help my memory/cognition problems, my doctor is adding Aricept to the Namenda I am already taking. I seem to be able to complete tasks better but we will have to see over a period of time if my overall memory impairment will be helped.

I rarely have to take any pain medication now. I still take Flexerill and a low dose anti anxiety med to help me get better sleep. So far it has been about ten weeks and I am still feeling like the Iodoral and ATP cofactor are helping. I am able to do more in a day than I was before the study. I have agreed to continue this regimine for another six months. We’ll see how things go but I am optimistic for the first time in over two years. I still have good days and bad ones but there are so many more good ones now that I have hope for the future.

12/2/07

I had to reduce the Iodoral and ATP cofactor because of side effects. My memory is just not getting better even though I am on two different meds for that reason. I actually think it is getting worse. I feel better today than I have all weekend. I had a bad stretch for a few days.

1/20/08

I have been feeling very bad for several days now. We have snow where I live and I always feel bad when we have cold wet weather. I think I have been having focal seizures and my short term memory and cognitive functioning are deteroriating. I went to a neurologist but I don’t think she takes this seriously. Just like other doctors, she wanted to suggest that this is somehow stress or psychological in nature before she has run even one single test. She did, however, order a few tests: neuropschological testing, an EEG, and yet another MRI. None of them have been scheduled yet. I guess her staff doesn’t feel like this is urgent (afterall it’s not them who are having their lives disrupted by these horrible symptoms.) I feel like if I were a man and presented to a neurologist with these same symptoms it would be taken seriously and would never be considered psychological. She even suggested at one point that I might have a low IQ or a learning disability...hello? She acted almost like she didn’t believe me even though my husband was with me and telling her that he had witnessed episodes where I was non responsive and staring past him...hello???? God I am so frustrated and upset by this!! I feel like noone can or will help me. I want to get better so bad. I am so tired of being sick and not being able to function!! I feel like I am going to die before anyone actually wants to figure this out.And to be honest sometimes I think that would be a blessing. I can’t imagine thirty more years of this.


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