Anyone else with fibromyalgia?

[kteague]

Before I was diagnosed with PLMD and later OSA, a frustrated doc told me my symptoms were consistent wth fibromyalgia, as he couldn't pinpoint any other cause for my symptoms. Diagnosis and treatment for my sleep disorders greatly helped in most respects, but in the over 10 years of treatment, seldom have both disorders been effectively treated at the same time, so my sleep has been erratic. And the PLMD was the cause of most of my muscle pain. My very specific joint and back pain has worsened, but every other symptom improved. Was a diagnosis of fibromyalgia accurate in my case? Who knows, but I have my doubts. It was in the years leading up to menopause,
Kathy

[Bearded_One]

Country4ever; I have been tested for just about everything that I have ever heard of. The only hormone problem was low testosterone, and I am taking Androgel for that; I have had my testosterone level tested three times since I started and they were all within the normal range. I have had bone density tests and xrays for arthritis. I have just a bit of arthritis in my lower back and that is about the only thing that doesn't hurt. I have had MRIs also; and I don't remember what they were for.

[socknitster]

[quote="Lee Lee"]Yes, I have been diagnosed with Fibromyalgia. Also, Lupus and Sjogren's syndrome. I'm not sure which one of those things causes the pain I get, since they all cause pain.
Two plus years of CPAP therapy has helped, very much.
I used to feel depressed and sleepy and I don't anymore.
I DO still have pain sometimes. But I have had a very interesting new diagnosis recently and I'm excited about it. Why excited? Because it's something that can be treated.
Turns out , I have PROFOUNDLY low Vitamin D levels. It's chronic. I take massive prescription Vitamin D on the first of each month and still, at the end of the month, I'm in terrible pain and have terrible fatique.
When I take the D on the 1st of the month, I'm feeling great.
A few days ago, I heard on the news that researchers believe it may be one of the causes of Fibromyalgia! I can beleive that, based on how I feel after the supplement.
I Googled vitamin D deficiency symptoms, and I was flabbergasted at all the bad things it can cause. And I have almost all of them. Here is one of the things I found. (this is from an article on the internet)

"Vitamin D deficiency may be characterized by muscle pain, weak bones/fractures, low energy and fatigue, lowered immunity, depression and mood swings, and sleep irregularities. "

I beleive everyone should be tested for Vitamin D levels.
We are going to be hearing a lot more about this in the near future.
Lee Ann

[Country4ever]

Wow! 50,000 units?? I guess they don't worry about overdosage anymore? Its one of those fat-soluable vitamins, which can build up in your fat.
I've heard that the blood test for vitamin D isn't very reliable. Anyone else heard that?
I'm definitely going to research this further.
Jen......may I ask what weird symptoms you were also having that the CPAP cleared up for you?

[Lee Lee]

Jen,
It doesn't say on the bottle, just 50,000 units.
When I first got diagnosed, with the deficiency, I took that much 3 times a week for a month.
Then , I got tested and I was at the bottom of normal.
The Doctor then told me to take the 50,000 units once a month.
I'm so glad to hear that someone other than me is fascinated with this subject. I've been doing a lot of research and while it's still a relatively new
health issue, it promises to be huge!
I can't stress enough how great I feel after I take the supplement and how crappy I feel when it starts to fade.
I have to go back to the Doc to find out what she wants to do about the fact that the supplement doesn't last the whole month. I have had a really nasty stress fracture in my right foot that still hasn't healed after almost a year. Wonder what casued THAT?
The important message is that I beleive everyone should be tested for Vitamin D levels. Especially those of us with OSA, since it's known to cause sleep disorders.
Country4ever, try boosting your D and just see if it helps with pain and fatique. Betcha it does.

[kteague]

Jen,

About your friend with the low iron - Has she been tested beyond the usual Complete Blood Count?

For nine years the doctors berated me for not feeding my daughter right. As an infant she had to use formula with added iron. As a child she took vitamins with iron, yet she remained anemic. At age nine I took her to a new pediatrician for abdominal pain. Turns out her spleen was enlarged. After some iron studies we found she has Thalassemia Minor and no matter how much iron she takes, her body can't use it. Unfortunately the excess iron is stored in the liver - not a good thing. Most people with this disorder never know unless a doc goes beyond the basics or they marry someone else who unknowingly has the trait and they have a child with the full blown disease.

Not saying your friend has the same thing, just that your comment about her raised my antennae.

[Country4ever]

Lee Lee,
I wonder if it would work better if you would take that bottle evenly over the course of a month?
I wonder if your stress fracture had something to do with your low D?
Is there a disorder where you just don't utilize vitamin D properly?
Might you have a parathyroid problem? I'm a retired nurse, and have forgotten lots of stuff!
I take Caltrate plus twice a day, along with an extra D. I'll read up on it and then go up on it.
Is there a better form of D to take than another?
Kteague........I hope you wrote to your first pediatrician and told him what the other pediatrician found. I would have been soooo ticked off that he had been on me for not feeding her right.......when he should have been looking further into the problem! And all that iron! What a shame. I hope she's doing well now.

[Bearded_One]

I take 4,000 units of vitamin D per day, which is 120,000 units per month. One of the tests done was a vitamin D test, and my doctor didn't see anything out of the ordinary.

The toxicity of vitamin D that was seen in early dosage testing may have been related to impurities in the vitamin D that was used. The vitamin D that is available now doesn't have these impurities.

[socknitster]

Jen,

About your friend with the low iron - Has she been tested beyond the usual Complete Blood Count?

For nine years the doctors berated me for not feeding my daughter right. As an infant she had to use formula with added iron. As a child she took vitamins with iron, yet she remained anemic. At age nine I took her to a new pediatrician for abdominal pain. Turns out her spleen was enlarged. After some iron studies we found she has Thalassemia Minor and no matter how much iron she takes, her body can't use it. Unfortunately the excess iron is stored in the liver - not a good thing. Most people with this disorder never know unless a doc goes beyond the basics or they marry someone else who unknowingly has the trait and they have a child with the full blown disease.

Not saying your friend has the same thing, just that your comment about her raised my antennae.

Kathy,

As a matter of fact, I believe that is the condition she has. She only found out because her son had the same issues that you describe about your daughter, and when he was diagnosed, all the years of testing anemic herself turned on the lightbulb. Her son had the same issues--they were insisting she pump him full of iron and when that wasn't working they finally did more testing and discovered this.

Yes, vitamin D is fat soluble, but everything I have read states that it is very slow to absorb into the body. When I first started thinking about it, I asked a pharmacist and they (two of them working together) told me the wrong thing--that it was water soluble! Then I read in a pregnancy book I was thumbing through to be careful not to take too much of it, so I started taking it more seriously and started researching it.

Personally I think the early reports of vitiminosis from vitamin D were related to poor diagnostics and poor science in general. Many of those early "reports" (we can only call them reports and not studies because they were not true studies in the sense that we do them now) were basicly anecdotes based on one physicians observation of 1 or a few patients and sometimes these patients had multiple and complex issues going on.

Actually from what I have read the blood test for vitamin D in the blood is actually now VERY reliable, but that wasn't the case 20-50 years ago.

Some of what I read was using the word EPIDEMIC in conjunction with this problem because in our modern world we are well informed of skin cancer risks and cover up with clothes and sunscreen and many of us in the upper northern hemisphere can only get sun about 2/3 of the year due to cold. Also those with dark skin make very little vitamin D because the melanin in the skin blocks its production.

Lee Lee's stress fracture almost certainly has something to do with her vitamin D status. First of all, people with low vitamin D have more brittle bones. Vitamin D is the mediator or key that helps calcium, magnesium and phosphorus do their jobs in building bone. It has been shown that a mother deficient in D will produce children who will suffer more fractures in their lifetimes, unless of course their post-natal diet is well supplemented I suppose.

Lee Lee, I would call your doctor and ask if you could take that dose every other week. Or maybe half that dose, split up. You may not even need an office visit for that. Just a phone chat with the nurse.

Other symptoms cpap cleared up for me, hmmm. We did a whole thread on that recently. I'll have to see if I can find it and I'll post a link.

Jen

[socknitster]

viewtopic.php?p=213532#213532

That is just a few of the weirder ones. Then there was the pain and the other symptoms that many of us complain of.

That is a fun thread to re-read.

Jen

[Country4ever]

Thanks Jen,
I have alot of those symptoms too, but I always attributed them to just being "me"......which isn't usually a whole lot of fun!
If I've been taking smaller doses of D for about 2 months, would a lab test still be valuable? Gosh.......I would love to feel better. My brain is just getting worse and worse and CPAP didn't seem to help.
Through the past 10 years of having fibromyalgia and going through menopause, also thinking I had Lyme disease for awhile (which I don't), I think its important to not jump on any health-treatment bandwagons without doing alot of research.......which is what I'll do with the vitamin D.
Many of us who are tired and sick alot, are too vulnerable to some of the scams going on out there. But if we research things first, its alot safer.
I used to be on the sun-protection bandwagon, but then I started feeling like we were really going overboard. The sun is life to us, on a number of levels, and no one is going to tell me that explosing myself to it in a reasonable manner is bad. So I no longer use sun screen. If I were out in blazing sun for hours and hours, I'd consider it, but not for shorter exposures.
Have you gotten into fish oil? I buy the best, but every time I go to take it, I start gagging! hahaha Needless to say, it just sits in my fridge!
Thanks for all your info.

[socknitster]

Country,

It would be simple enough for your doctor to do a complete blood work up including testing vitamin D. I know what you mean about medical fads, but I do believe there are nutritional deficiencis in our western diet. We are SUPPOSED to eat a wide variety of fruits, vegetables, grains and meats. Yet we TEND to eat the same things over and over and a lot of what we fill our body with is stripped of nutritional content by refinement. Sure, they try to throw in some vitamins for good measure, but it is nothing like the way we are supposed to eat. I don't find it hard to believe someone could have a vitamin deficiency--I find it easier to believe that most of us DO in some way or other.

Yes, I take fish oil. I stopped when I got pregnant because i was worried about mercury. (It is a shame that we have poisoned the oceans and thereby one of the healthiest foods we could possibly eat!). Then I recently found a fish/omega 3 supplement at Walgreens by Natrol, about $13, which said it was molecularly distilled for purity and third party tested by USP. It also contains omega 3's from plant sources and a very essential fatty acid that is really hard to get in the normal diet called GLA.

Since our brains are 60% fat, maintaining healthy levels of good fat in the blood for prostaglandin production (hormones that control everything) is essential. This particular supplement also has lemon oil in it so you don't burp fish taste. Good fat is important and most of the oils we use in western cooking don't have any omega 3's in them at all. If we got enough omega 3 from flax and walnut (plant sources) our livers could convert it to the most important fatty acid we need eicopenta-something, however it is easier and more easily absorbed by the body if we take it directly in the form of fish oil.

There are some studies out now that link low levels of omega threes in the blood to everything from depression to allergies to heart problems. Google it and you will see. THe problem--INFLAMMATION. Omega 3's naturally decrease inflammation. Sure you can also decrease it by taking nsaids, but they do two bad things--they are bad for the stomach and they stop all prostaglandin production--good and bad. And that can be hard on the body too. Prostaglandins are the precursers for seratonin, sex hormones etc etc. They are pretty important!

Sorry, but you just tripped over another one of my fascinations. I was recently at a very low point (being pregnant, that isn't hard to imagine!) but I started taking this fish oil supplement and within days felt so much better and so I started looking into the relationships between omega 3's and other conditions.

I had been on the verge of asking my OB doctor for an antidepressent because I was showing symptoms of clinical depression--something I did NOT want to do--(which I know well, having suffered this many times before). Then I started taking the fish oil, for health, not knowing it could possibly improve my mood, and within three days I was out of my chair and re-arranging and cleaning out my son's playroom and I have been feeling better and better since then.

The malaise, fatigue, extreme irritability, all gone. And that has to be better for both me AND baby. This happened well into the second trimester when my morning sickness was already done. And in pregnancy things don't normally happen fast. I read later than if the depression is caused by low omega 3, it can be reversed in mere days, which is exactly what I experienced. DHA, an omega 3 you are hearing a lot about because they are putting it in formula now, is a large part of the fatty acids in the brain--especially important to the fetus.

Ok, I'll get off my nutritional soapbox now. I don't like taking supplements. I want to get what I need from food, but it isn't easy. Especially since I can't consume dairy due to my allergy. So that is what led me here to this diatribe. I hope it helps someone as it has helped me. There is a lot about this in scientific studies and on medical websites on the web, look into it yourself, especially if you think you might be depressed.

Jen

[Country4ever]

Thanks Jen,
We use alot of olive oil and I've been making a smoothie for breakfast with a banana, blueberries, almond milk and ground flax seed.
I don't do well with milk either (although I do okay with yogurt and cheese), and its been hard finding something I could drink. Rice milk and Soy milk seemed to upset my stomach too. A few months ago, I found almond milk. The unsweetened stuff has practicially no carbs, no sugar.....which is a great base to use for healthy smoothies. And almonds are good for you too. I'm thinking of ordering some real kefir grains. Have you ever used them? They aren't really grains.
We have unfortunately stripped our soils of much nutrition, and I think that's another reason even if we eat "good" foods, they might not have much in them. I grow good stuff in summer in the garden, but being in the midwest, there isn't much fresh here in the winter.
Thanks for all your info. You've reminded me of how I need to increase my omega 3's. I have some problem with reading......have had it since I was born, and its very hard for me to read. So that keeps me somewhat more ignorant than I might be if I could read and comprehend better.
I appreciate you spelling things out for me! I really do.

[lawdognellie]

I was also diagnosed with FMS at the tender age of 22. I had profound pain, but over the years, my main problem shifted to horrible fatigue. Got diagnosed with apnea, but didn't help totally fix the problem. It turned out that I have a vitamin B-12 deficiency which causes fatigue, peripheral neuropathy, depression, loss of memory, decreased mental acuity, etc. I started taking B-12 shots and it's been like a magic cure. I'm still having problems not getting REM sleep, but at least I can now function like a somewhat normal person.

My neurologist told me that vitamin deficiency can cause severe neurological problems, but doctors don't even think to test for it, so they get an idiopathic diagnosis like FMS. My only complaint is the nerve damage isn't totally reversible. Okay, back to studying for me.

Sarah

[socknitster]

Thanks Jen,
We use alot of olive oil and I've been making a smoothie for breakfast with a banana, blueberries, almond milk and ground flax seed.
I don't do well with milk either (although I do okay with yogurt and cheese), and its been hard finding something I could drink. Rice milk and Soy milk seemed to upset my stomach too. A few months ago, I found almond milk. The unsweetened stuff has practicially no carbs, no sugar.....which is a great base to use for healthy smoothies. And almonds are good for you too. I'm thinking of ordering some real kefir grains. Have you ever used them? They aren't really grains.
We have unfortunately stripped our soils of much nutrition, and I think that's another reason even if we eat "good" foods, they might not have much in them. I grow good stuff in summer in the garden, but being in the midwest, there isn't much fresh here in the winter.
Thanks for all your info. You've reminded me of how I need to increase my omega 3's. I have some problem with reading......have had it since I was born, and its very hard for me to read. So that keeps me somewhat more ignorant than I might be if I could read and comprehend better.
I appreciate you spelling things out for me! I really do.

Almonds are truly a miracle food! Really, really good for you. I use rice milk as my milk substitute for some things, coconut milk for others. Sometimes I buy almond milk. I do try to eat almonds though because they are so good for you.

I have thought of buying kefir grains as well. But making kefir or yogurt kind of sounds like keeping a pet (of which I already have two cats and two dogs and a fish!) My son's pediatrician turned me on to kefir when he had tummy problems after taking antibiotics. Now I try to get him to drink kefir every day. I have tried it myself but I am allergic to milk protein and it made me sick. As I get older my allergies seem to be less and less violent so maybe someday I will be able to drink it. It certainly seems like it would be good for digestion!

Well, I'm glad my little "speaches" might be helpful. Sometimes I feel like Cliff Claven on Cheers. I have all this info in my brain that most people would term "useless information" and I love to share it with others. If I can distill all my hours of research into a few paragraphs that could help someone, that makes me day. I'm beaming!

Jen