Fibromyalgia - my battle

2006-10-23T15:28:00.000-07:00

Here is a great resource about fibromyalgia.

Blog Stuff

2006-09-26T07:05:00.000-07:00

I have found that blogging has been really great for me.

If you don't have a blog, but are considering making one, here are some good resources:

Blogger - which hosts my blog, of course!

360 Yahoo!

Freewebs

Here are some great by friends of mine, and some that I've just seen around the net:

Grahame's Blog
Improving Society
Aussie by Marriage
Big Happy Family
Shirley Keeldar

2006-09-17T16:52:00.000-07:00

I did see another orthopedist about my shoulder. Wasn't impressed. The technician wanted to redo my x-rays. Even though I told him I'd had one done just two weeks earlier! They really did NOT need to do them again, as I could bring them into the doctor. They wanted the income from it, I am sure that was their only goal.

No thanks.

I won't return to THAT doctor. I am very happy with my chiropractor, however. :)

Psychiatric solutions for health problems

2006-09-16T13:32:00.000-07:00

If you are considering taking psychiatric medications, because your doctor has not given you an adequate medical solution for your pain from fibromyalgia, please study this issue thoroughly first.

Whether it's Prozac for the "pain relief" (which it doesn't provide anyway), or Ritalin to help with fibrofog, you should know that these are not cures, and will leave your very real condition untreated.

FDA Alert On Violence and Suicide-Inducing Stimulants.

2006-08-24T15:34:00.000-07:00

I did some Egoscue exercises a few weeks ago. It's so hard to find the time to do them! But my shoulder is remarkably better. I went to see an orthopedist, and he asked me to move it - lift my arm over my head - and it was slow and painful, but I COULD DO IT! I had not been able to do that for over six months.

So - the frozen shoulder got better. From one day of exercises.

I need to do more, definitely!

physical therapy

2006-07-19T14:37:00.000-07:00

Why is it that physical therapy sometimes brings such improvement - and other times, such agony?

Fibromyalgia - water exercises

2006-07-16T13:27:00.000-07:00

Here is an interesting resource about exercise for fibromyalgia.

I have found that swimming is a great source of help for me, but it takes a few weeks of swimming 3 - 4 times a week before I really notice the difference.

More Water

2006-07-11T04:54:00.000-07:00

I'm still trying to drink more water, but I continually forget. It really shouldn't be this hard to drink a bunch.

Does anyone else experience this?

eMedicine

2006-07-09T08:27:00.000-07:00

eMedicine has an interesting and informative section on fibromyalgia. It covers the basics, which is helpful for anyone recently diagnosed with this condition. They estimate that 4 MILLION Americans have this condition. Shocking!

Basic info on fibromyalgia

Water

2006-07-04T08:08:00.000-07:00

I have been drinking tons of water, per instructions from my doctor, and I'm feeling sooo much better still.

Perhaps this was the main thing missing for me. The last fibromyalgia flare-up I had was very mild - lasted a day or two, and I was mobile around the house through it.

So -- maybe it's water that's missing for you, too, if you are suffering from fibro symptoms.

I'm drinking about 100 ounces of water a day - seems like a whole lot, but it doesn't seem like too much anymore!

2006-06-28T12:00:00.000-07:00

One thing that I think really helped me with my shoulder is the stretching exercises. With frozen shoulder, the motions are so greatly reduced. This is very important, I think, in giving the shoulder the chance to heal.

got relief!

2006-06-27T11:48:00.000-07:00

I found a good chiropractor, and I have experienced GREAT relief in my shoulder! It is still weak and hurts, but the pain is way reduced. She suspects (as do I) that I actually have frozen shoulder, which is most common in women between 40 - 70 years of age. I'm not that old, but almost 40, so there you go.

I have a lot more motion in the arm - it is a big relief.

Finding the best doctor

2006-05-31T09:47:00.000-07:00

If you are looking for a good doctor, using the doctor reports system is a good idea.

in the long run

2006-05-05T09:39:00.000-07:00

Well -- in the long run, too much walking really is too much.

I think what happens is this: the exercise is good for the fibro, but bad for the chronic fatigue. So I'm exhausted for the next day or two -- spend too much time inactive as a result - and the lack of exercise resulting from that makes my muscles and joints worse.

I think that's it.

resting

2006-05-04T08:45:00.000-07:00

Well, after that huge long walk I felt better - the next morning. But that quickly went away.

It seems what happens is that the chronic fatigue syndrome symptoms set in with too much activity. The muscles and joints feel better - but the exhaustion takes over. So I do less for a day or two - and the muscles and joints feel the pain.

I think not overdoing it is key.

Too much walking

2006-05-03T09:22:00.000-07:00

I walked a couple of miles yesterday.

It was very difficult at the time - and I woke up just exhausted this morning. But my shoulders and back feel better today.

Interesting!

walking

2006-04-25T10:20:00.000-07:00

I walked about 10 blocks yesterday, and while it was difficult at the time - and I was exhausted when I came home - this morning I felt much better when I woke up. My shoulders and neck are better.

I am going for another long walk today to see if this may, indeed, be the cause of improvement.

Hypoglycemia and Fibromyalgia

2006-04-21T19:12:00.000-07:00

Many people with fibromyalgia are actually hypoglycemic as well. Dr. St. Amand estimates that 40% of women diagnosed with fibro are hypoglycemic. And without treating the hypoglycemia, these women still won't feel well, even with otherwise effective treatment for the fibromyalgia. This is not to confuse carbohydrate addiction and natural cravings for sugar which are part and parcel to fibromyalgia, but rather, to deal with another problem altogether, which just sometimes occurs with fibromyalgia - the hypoglycemia.

One answer is to read a lot of health and diet books to get a better, fuller understanding of nutrition. Once you comprehend the protein process more, then you can make better nutritional and dietary decisions.

More neck and shoulder stuff

2006-04-20T08:50:00.000-07:00

I picked up the Egoscue book. Looked at the exercises. And put it down, thinking "these are too hard."

I'm going to try again today. The neck exercises look okay, it's the ones for the back that seem overwhelming. I need to do them, though, so I just gotta grit my teeth and do it. I am sure they will help.

In the meantime I am studying more written by Dr. Mark A. Frankle and working towards finding a good treatment for my shoulder pain.

Much better today!

2006-04-16T18:12:00.000-07:00

One nice thing about fibromyalgia, is that the bad times come and the bad times go -- and when I'm feeling better, it just feels great! I know that my body is not back to "normal" (optimum health), but when I can get through the day without too much pain or fatigue, then I'm pretty happy!

Still walking carefully because of my knee. And my shoulders and neck do hurt a little but not too much today.

Whew! I love days like this!

Doing a bit better today

2006-04-14T08:42:00.000-07:00

The stress has reduced - I used a massager on my back and shoulders last night and that helped. But I really am sleeping badly - my back is almost painfree except for my shoulders and neck which are in terrible pain right now. I don't know what I'm going to do - I can't afford a new bed yet, and I'm hesitant to get more cortisone!

I should crack open the Egoscue book, though - that usually helps.

stress

2006-04-12T09:17:00.000-07:00

I have been in a more stressful-than-usual situation during the last few weeks. A close family member is seriously ill. I traveled via train to see her - the combination of grieving, dealing with stressed-out family members, and traveling a long distance on a train, have resulted in new symptoms for me. I am having more shoulder pain, and a flare up of the common chronic fatigue symptoms - swollen glands and low grade fever.

I have found that during this kind of stressful situation, when I'm feeling bad as a result, drinking a warm cup of tea (in addition to extra water), and relaxing with a book in a hot tub really, really helps. Anything that is normally soothing to me helps.

Also, when I use soft sheets and blankets, and makes a big difference.

Fibromyalgia Support

2006-04-08T11:37:00.000-07:00

Here is a new group that offers support for fibromyalgics:

Fibromyalgia-Support.

I have found that the Yahoo! group Guifenesin has been very, very helpful to me. Especially with the guai protocol, which requires a lot of work to get started on to begin with.

Shoulder pain

2006-04-05T12:27:00.000-07:00

I am still having some trouble with my shoulders. The cortisone treatment definitely helped, but the other shoulder still hurts and the treated shoulder sometimes hurts more than others.

Here are some pages I found about shoulder and elbow treatments:

shoulder specialist

Specialists

Proximal Humerus Fractures by Dr. Mark A. Frankle

spirituality and illness

2006-04-03T16:21:00.000-07:00

Here is a great site about Volunteer Ministers and a post about Spiritual approaches to physical problems

Exercise

2006-03-28T17:53:00.000-08:00

I have found that certain forms of exercise make my fibromyalgia symptoms worse - including walking. Other exercise, over a period of time, can help a great deal.

I spent a summer swimming 4 days a week - the first day I could barely make it across the pool once. By the end of the summer, I was doing 35 laps. I felt wonderful! I was able to move around much better.

I am hoping to find a pool I can use daily in my new neighborhood!

NOT an immune system problem?

2006-03-08T11:00:00.000-08:00

Whoa. This is cool.

Recent fibromyalgia findings

Essentially, there is nothing specifically immunological in fibromyalgia – and if there is, whatever little there is, I think it is secondary to the central nervous system problem that fibromyalgia patients have,” says Dr. Muhammad Yunas. “It’s a chronic, neurologic disease.”

This would explain why something like a car accident could trigger the disease. This is very interesting, and hopeful. I feel as thought they are getting closer to an answer.

living with fibromyalgia

2006-03-07T07:31:00.000-08:00

I had a great month, and now I am starting to have another flare-up. I felt so good for so long, knowing this is happening - and not knowing how bad it will get or how long it will last - is creating a bit of anxiety for me.

This time I am taking it very easy. At the first sign of the flare, I slowed down. Not fast enough, I don't think - but I definitely have slowed down. One thing I've noticed is that I am having symptoms - my ligaments are loose (my knee started to go out last night), I feel the stress in my back, the muscles in my arms ache a little. But pain is not the worst symptom. I think that by taking it easier than I normally do, right from the beginning of the flare, I am perhaps avoiding the worst of it.

We'll see!

I am wondering if anybody has tried Goji fruit?

Emotional Stress

2006-02-08T09:21:00.000-08:00

For me, one of the best things I can do to prevent flare-ups of fibromyalgia and to make them easier when they do occur, is to reduce stress.

Some things I do to reduce stress:

soak in the tub
have my husband watch the kids for a few hours while I rest
organize my activities - plan everything out on paper first, so I do things in the most efficient order

Mostly, it's an exercise in forgiveness - forgiving myself for only being able to do what I can do, and not thinking I need to be superwoman - or even the woman I am when I'm not in the middle of a big flare.

saw the orthopedist

2006-02-01T06:37:00.000-08:00

Well, my primary care physician referred me to an orthopedist. I couldn't see Dr. Mighell, which would have been my preference, but I live too far away. So I saw another doctor, and that went well. I got a shot of cortisone and am MUCH better!

Shoulder pain

2006-01-18T09:34:00.000-08:00

Ugh. I have been having a horrible problem with my shoulders. One of them hurts so much - my whole arm hurts - that I can't hold my baby anymore! I don't know what to do. It's worse at night - the way I sleep seems to contribute to the damage.

I have an appointment with the doctor next week. I hope he can fix this - I am miserable.

2006-01-07T18:38:00.000-08:00

Christmas went so well this year that I want to remember what I did for next year. Since fibrofog had rendered me stupid, I needed to keep track of everything I did. I could not count on remembering anything. And worse, the stress of TRYING to remember everything would have made me sicker.

Lists included:

a list of the kids' sizes and my husband's sizes
wish list from each child
list of what I wanted to give each child
what I wanted to give my husband (had to be kept private from him)
what I wanted to give HIS family
what I wanted to give MY family

A list of what I needed to get from:
Target
Walmart
Radio Shack
Costco
and the mall

I had to keep a list of what I figured Santa was bringing each child

Then each child had a list for I had bought for them and tucked away
MY extended family had a list
My husband's family had a list
and I had a list for what I had bought for my husband

As I was wrapping things, I kept a list of what was already wrapped - a few times I forgot to write it down, and I had to re-open the package as I couldn't remember what was in there! This happened twice with packages I HAD JUST WRAPPED.

(For any healthy people reading this, I know this sounds extreme, but that's how it is when fibrofog hits - a normally "with it" person can become totally witless.)

As it ended up, Santa was very fair to our kids this year, and he brought them things pretty much equal in monetary value - and Wow! value.

And we were fair in what we gave the kids, as well. They each got something huge, and some smaller things, too. By huge, I don't mean expensive - I mean the $20 enormous soft stuffed dog from Costco for my daughter, and that sort of thing.

We spent less than usual, but it looked like more.

The only thing that did go perfectly was gifts for the relatives. Some of them got way more than others. I stressed about this a little bit, then decided to let it go. I could only do so much, and I know they would NOT want me getting sicker over something like that.

The most important thing is that when I was so sick I thought "I can't do this" I managed to - simply by thinking outside the box and really acknowledging how bad the situation was - and doing extreme planning to keep me from going under. It worked!

I did make a new year's resolution that I am keeping so far - every payday, we buy something for Christmas. I see something nice, on sale, and get it - at home, it goes into the "Christmas" box in my closet.

Planning reduces stress

2005-12-30T09:41:00.000-08:00

Over the winter, the fibromyalgia affected my cognitive abilities more than anything else. I was having trouble concentrating and remembering things.

This is what I did to prepare for the holidays. I have a big family, so it was important I got everything done, without killing myself!

1) I made lists. Lists and lists and lists. As I accomplished each item, I checked it off and went to the next one.

By making lists, I realized, just in writing the things down, that I could arrange the order of activities in a more efficient manner. For instance, if I was planning a trip to Target and Costco, I could do them both in the same day. I also realized that the way I handled mundane things, like household chores, is more efficient in certain order.

Fibromyalgia and Magnesium

2005-12-10T18:34:00.000-08:00

Magnesium and fibromyalgia

2005-12-07T06:50:00.000-08:00

Here's a great site about fibromyalgia trigger points - this includes a description of the weak-knee, weak-ankle syndrome, which I haven't actually seen discussed in many places, but which is one of my most troublesome symptoms.

http://www.anapsid.org/cnd/diagnosis/fmcmp.html

High Blood Sugar and Low Blood Sugar

2005-11-08T20:53:00.000-08:00

Blood sugar can be a problem for fibromyalgics. I have a tendency towards low blood sugar, but during this past year I had high blood sugar during a pregnancy. Both these factors mean I am at greater risk for Diabetes.

I am working on improving my diet. My biggest problem is actually that I don't eat regularly. I am overweight - I evidently get enough calories - but not often enough. I think smaller, more regular meals, would be better for me.

It's hard to keep that up when children and family responsibilities keep me so busy. But it's important!

More on blood sugar

2005-09-04T17:32:00.000-07:00

Here is a list of resources I found on improving blood sugar levels:

Glucose

Diabetes

2005-08-15T10:07:00.000-07:00

I am very concerned about diabetes since my blood sugar has tested high. With my other pregnancies it wasn't high - generally, it drops even lower, to borderline hypoglycemia.

A close relative of mine is diabetic, and she has been on insulin. I don't want to get to that point! So I am following the advice I read about at Real Food Nutrients - Diabetes Information and hopefully this will help. I started taking their supplements - vitamins and minerals, plus calcium and magnesium. Already I am feeling better. Let's hope my next test has a more positive result than the last!

Worrying about my health is making this pregnancy more stressful. I am so looking forward to having this baby in my arms! Everything will seem so much calmer then!

Physicians in Tampa

2004-10-12T13:44:00.000-07:00

Here is a link to find a doctor in Tampa:

Memorial Hospital of Tampa (where I found Dr. Mighell and Dr. Frankle!)

Dr. Mark Mighell, Dr. Mark Frankle

2004-07-07T19:02:00.000-07:00

You can listen to this tape from a 2001 conference about shoulder and elbow surgery.

I have had some problems with my shoulders, and if the cortisone treatments fail to do their job, I will consider surgery. I am particularly interested in what Dr. Mark A. Mighell and Dr. Mark A. Frankle have to say.

Dr. Mighell and Dr. Frankle have been working in this field for years, so their input is especially interesting to me.

My healing journey

2004-06-01T16:21:00.000-07:00

I was diagnosed with fibromyalgia 3 years ago. I began guaifenesin treatment on September 17, 2000. I have been off the medication for some time, as I have been pregnant and now am breastfeeding. So I am looking for other solutions, and will be writing about those here.