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RE: Fibromyalgia and treatment options? - 7/31/2009 3:09:50 PM

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Lovingpet taught me that some of the symptoms of fibro are very similar to the parathyroid issues. This is in part why more research is needed. Some dx'd with fibro may not have fibro, but something else. We need a definitive test that is accepted by most in the medical profession! I know that most with cadasil like I have were first dx'd with MS. Last I checked, Cadasil was not taught in American medical schools. Sometimes they just can't know for sure in many of these illness's so the remedy or treatment will vary on what is effective in my opinion... besides many other things that make an expereince with an illness different for different people.

I do know that Lovingpet had me in my medical records real quick! lol Thank you lovely lady!

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RE: Fibromyalgia and treatment options? - 7/31/2009 3:33:24 PM

Brain

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It’s a long video but I watched it until the end and there he tells us that people don’t take a high enough dose of vitamin D. He talks about 5000 international unit’s or IU s. 23 is still low if you said 30 is normal.

I took 5000 yesterday but I’m going to up my dose to 10,000 international units a day. The bottle I have now has 100 tablets of 1000 IUs for each tablet so that means I only have a 10 day supply if I take 10 a day.

I think it depends on what problem you’re trying to correct. Unfortunately, I remember him saying some things are not reversible. I remember him talking about cancer and saying people in clinical trials did better taking vitamin D and lived longer and it did definitely get rid of some problems like rickets.

I think for some immune system disorders like multiple sclerosis you have to take vitamin D when you’re young when your immune system is still developing.

All I have to say is, he is the doctor and I think he knows what he’s talking about but he probably would agree with eating a good balanced diet of fruits and vegetables, fish and a very small amount of red meat.

Another thing is that alcohol is very carcinogenic. Apparently when alcohol gets into your body it gets converted into something, a chemical, which is toxic and carcinogenic.

Studies show that women who have at least one alcoholic drink a day greatly increase their risk factor for cancer. Same goes for men who drink at least two.

http://cancer.about.com/od/preventiontips/qt/alcoholcancer.htm

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RE: Fibromyalgia and treatment options? - 7/31/2009 3:40:50 PM

Brain

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quote:

ORIGINAL: Rainfire

Ok, so it's offiicial, finally, years later.... The doctor yesterday confirmed what has been suspected for years: I have fibromyalgia, among other things. He started me on Lyrica, Celebrex and Zytram to try to get it manageable. (With some Percocet thrown in for those "bad" days.)

I've seen that a number of us here on CM have fibro, if you have it, what are you doing about it? What treatment does your doctor have you under or are you going an alternative/holistic route? What have you discovered that works for you? Anything you do in your daily life to help?

Do you have any suggestions for someone who's just been diagnosed with it? What helps, what doesn't help, that sort of thing. The Lyrica seemed to help but I have to be careful taking it - I swear it makes me feel like I'm silly-drunk...all giggly and tipsy. Lumus had fun with it last night but I can't do that every day, especially when we have Mr. Smarties, who's now 5 years old.

Thanks in advance, here's hoping this makes sense. Da brain, iz a little fuzzy-wuzzy this morning. I have nooooooooo clue why.... (And yes, I'm being sarcastic; trying to keep my sense of humour in good shape!)

Medicine in the future will be much better. You will be 200 year old and play great tennis.

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RE: Fibromyalgia and treatment options? - 7/31/2009 3:44:26 PM

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There are studies that dispute other studies. Happens all the time.

I believe that we have genetically changed... which agree's with this doctor on a few things, but I also believe that what is genetically changed, will predespose people to many things and until we understand all genetic's/dna and how things work, we may never resolve some medical issues. Until we know the effects of all things... paint... weather... local business and enviormental things... race factors and on and on... NO ONE Has the answers.

Why is it that MS has a high rate in Colorado? Why is it that illness of certain types are found more in one race than another? Why is it that certain families have certain types of disease or hyperactivity or whatever? Why is it that the medical and research communities focused on men more than women for heart disease? Why... why... why? You find the one that knows all the answer's and you may have just met god. Until then... we are playing an educated guessing game much of the time.

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RE: Fibromyalgia and treatment options? - 7/31/2009 3:51:50 PM

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quote:

ORIGINAL: Brain

It’s a long video but I watched it until the end and there he tells us that people don’t take a high enough dose of vitamin D. He talks about 5000 international unit’s or IU s. 23 is still low if you said 30 is normal.

I took 5000 yesterday but I’m going to up my dose to 10,000 international units a day. The bottle I have now has 100 tablets of 1000 IUs for each tablet so that means I only have a 10 day supply if I take 10 a day.

I think it depends on what problem you’re trying to correct. Unfortunately, I remember him saying some things are not reversible. I remember him talking about cancer and saying people in clinical trials did better taking vitamin D and lived longer and it did definitely get rid of some problems like rickets.

I think for some immune system disorders like multiple sclerosis you have to take vitamin D when you’re young when your immune system is still developing.

All I have to say is, he is the doctor and I think he knows what he’s talking about but he probably would agree with eating a good balanced diet of fruits and vegetables, fish and a very small amount of red meat.

Another thing is that alcohol is very carcinogenic. Apparently when alcohol gets into your body it gets converted into something, a chemical, which is toxic and carcinogenic.

Studies show that women who have at least one alcoholic drink a day greatly increase their risk factor for cancer. Same goes for men who drink at least two.

http://cancer.about.com/od/preventiontips/qt/alcoholcancer.htm

I am saying it may never get to normal levels because my body is suppressing the vit D intentionally. I take 5000 IU a day and have for 2 years along with a round of an additional 10000 IU a week for 8 weeks and another round of 20000 IU a week for 8 weeks. I should have been through the roof. Further, better than taking any pill, because our bodies are terrible at using dietary vit D is to produce it endogenously through the skin. I am also required to spend as much time as possible in the sun (NO sunscreen because the vit D is produced by the UV rays of the sun that we normally block).... nude.

Few doctors actually know what they are talking about as well as a patient would hope....unless of course the problem happens to them or someone they love. Textbooks and labs aren't everything.

As for alcohol, it really depends on the source. Fruit source alcohol, especially that of grapes (ie wine) have shown effectiveness in REDUCING cancer risks. Things aren't so black and white.

Oh and no one is going to live forever. What we can hope for is to live better!

PS: Lockit, you are welcome sweetie! Don't know if you found anything to look into further, but glad you took a look anyway.

lovingpet

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RE: Fibromyalgia and treatment options? - 7/31/2009 4:04:55 PM

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quote:

ORIGINAL: Lockit

I believe that we have genetically changed... which agree's with this doctor on a few things, but I also believe that what is genetically changed, will predespose people to many things and until we understand all genetic's/dna and how things work, we may never resolve some medical issues. Until we know the effects of all things... paint... weather... local business and enviormental things... race factors and on and on... NO ONE Has the answers.

They are much closer to unlocking the connection between the genome and our predispositions towards disease than you may think; currently it costs around $100,000.00 but someday the price will be more affordable and with that will be the advent of personalized medicine.

http://www.bostonmagazine.com/articles/the_burden_of_knowing/page1

(The article raises another point: do we really want to know and what is the cost of knowing)

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RE: Fibromyalgia and treatment options? - 7/31/2009 4:12:50 PM

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quote:

ORIGINAL: lostyoungling

I was diagnosed at 15. The rheumotologist's exact words were "You will never live a normal life"...of course I burst into tears and my Mom ripped him a new one. My treatment plan is Celebrex because I finally bitched so much that they had to give me some help to shut me up and I only accomplished that in the last 4 months. The general consensus between all those around me is "Put on your big girl panties and suck it up". No one will prescribe anything for the pain, no one is empathetic on my bad days, and apparently everyone else lives with chronic pain and never misses a day of work so why the hell should I. I was in absolute agony on Tuesday and got told to come in to work because that would help distract me. It hurt to sit, it hurt to stand, it just plain hurt so bad to exist. I'm on Lyrica only it doesn't help with the fibromyalgia, only my anxiety. My personal treatment plan is take enough ibuprofen to kill my liver. I try not to do it often but sometimes I just need to do SOMETHING even if it doesn't really work. It makes me feel less helpless. I say just keep hope. And if you need a change in treatment or something more from your Docs then bitch until you get it. You have the right to exceptional care from a knowledgable source.

I am sorry that you have to fight so hard to be taken seriously.
Have you sought treatment at a university hospital or one with a comprehensive approach to pain management issues?

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RE: Fibromyalgia and treatment options? - 7/31/2009 4:14:52 PM

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Oh I believe we are close to a lot of things! But close doesn't always mean we have the complete answers to all things. There are so many things that come into play.

Take my family. All the same genetic's basically. Same illness in Cadasil. By what is known of Cadasil... when I found out what I had, there were one hundred and fifty families worldwide that were known to have it. There was one web site about it. Now... other countries have done research. Other countries have data that was added to what the French researchers discovered.

By all the information... I should be dead, buried or ashes blowing in the wind. My mother and sister have it as well. Now, I was the first to get any of the symptoms. Mom and sister got them about the same time. They had better medical care, less stress, support and all sorts of things I didn't have as a single parent, no support, rarely medical coverage and choices because I was labled early on and no insurance company would take me. My life was far more stressful and I smoked for half my life, had sex when and with who I wanted, took risks and all sorts of things.

Mom, two years after her symptoms started was in a bed for eight years in another world and then died and my sister might as well be dead and here I am going strong, here to befriend or harass and care for my son and grandbabies and all that I am still able to do, when by all information I should have been the first one dead!

Even if we understand genetic's... there are other things that may play into things. Hell, maybe in my soul I was a much happier person or maybe I didn't live in CA as long as they did or maybe fucking saved my ass! Who knows? lol

< Message edited by Lockit -- 7/31/2009 4:19:56 PM >

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RE: Fibromyalgia and treatment options? - 7/31/2009 4:25:13 PM

Brain

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I think I remember him saying something about vitamin D and weight. I know he said something about vitamin D being stored in fat and it being fat-soluble. But I'd have to watch it again and I need to take a nap right now. I think it does get complicated and it helps to be a doctor but they don't know everything either. Maybe if you have some things going on with your weight it's affecting your vitamin D levels but I don't know how that works exactly.

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RE: Fibromyalgia and treatment options? - 7/31/2009 4:31:11 PM

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He did say vit D was stored in fat cells. I can't remember all he said about it, but he did say that.

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RE: Fibromyalgia and treatment options? - 7/31/2009 4:44:37 PM

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Once it's stored, however, it does not release well at all. I am a chubber, no doubt, so I should be sopping in vit D if it were bioavailable, but it isn't. It is intentionally hard to access because EVERYTHING stored in fat cells is there for emergencies. The body is fairly reluctant to give up those cells for that reason. It is part of what makes weight loss difficult. Unlike many of us, our bodies prefer to be prepared.

I can study the same stuff the docs study. I don't have to have the letters beside my name to know my body and conditions well. I trust me when it comes to medicine. I trust a doctor who listens to me and considers what I am saying, not because I am right or wrong, but because in following up on things, we may actually stumble upon something useful along the way. It all adds pieces to complete the puzzle. People scare me to death that walk into a dr's office, tell the dr their symptoms, take the pieces of paper, take the pills, and repeats. No research about their own conditions. No awareness of what treatments are available or what some of the best ones are. Nothing. They tend to die young these days.

lovingpet

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RE: Fibromyalgia and treatment options? - 7/31/2009 4:49:04 PM

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Here is a good website about vitamin D.

http://www.vitamindcouncil.org/

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RE: Fibromyalgia and treatment options? - 7/31/2009 4:53:04 PM

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Most of the 17 things listed are common symptoms of hyperparathyroidism. Just thought I'd throw that out there!

lovingpet

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RE: Fibromyalgia and treatment options? - 7/31/2009 5:33:00 PM

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quote:

ORIGINAL: lovingpet

On the vitamin D issue. When I hit what I thought was rock bottom (enter the pickaxe I seem to have found now), my vit D was 8. 30-60 is normal. After two years, I have still only made it to 23. Now if vit D were the great cure all, I should be feeling better. NOPE. My symptoms are worse than every and I am finding I have new symptoms every day. It's not all it's cracked up to be.
lovingpet

I stop eating dairy last year, and mine went down to 8. Now I take 3000mg/day.

When it was 8, my legs, ankles, and feet were killing me. I figured it was bad shoes, but it was the Vit D. So sometimes it can do a lot of good for musculoskeletal pain.

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RE: Fibromyalgia and treatment options? - 7/31/2009 5:43:24 PM

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It can and it does, no denying that. Some cases are just more involved is all I was saying. Something like a cheap bottle of a vitamin is very tempting when a person is dealing with chronic pain and fatigue. It was only a word of caution. Hope balloons get popped often enough without setting ourselves up for it. I'm glad it helped you! I am sure it wasn't a cure you were quite expecting! The answers pop up in the strangest places sometimes.

lovingpet

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RE: Fibromyalgia and treatment options? - 7/31/2009 5:58:02 PM

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Just last week, we had to decide whether my daughter told her doctors all she is genetically predisposed to and we know she has. We decided to say nothing because she could lose her insurance. It will all come out later on and since she is only mildly effected by certain things and we look into medications and such, we feel safe so far in doing this. It can be risky and some might feel it is wrong, but limiting her life and putting her where I have been earlier than I got there would be insane to do!

She not only got all my illness, but added a new one we just discovered. She has a lot on her plate and handles it well. She even has determined she will care for my son when I no longer can.

There is something about going through all of this that may weaken us, but it sure strengthens us in many ways. If I weren't ill, life would have been better, but I never would have met hundreds of people I was blessed to know.

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RE: Fibromyalgia and treatment options? - 7/31/2009 6:04:52 PM

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LOL I was diagnosed at Duke University's childrens pain clinic. Or at least that's where I got my last opinion at. I think it was the fourth. Unfortunately, I never went back after my 12 hour marathon day of testing. I'd go to another pain clinic if it weren't for the fact that I can't afford it and my parents won't help pay for it. I already know some meditation exercises (focusing on the pain melting down from you, focusing it on one spot and out through there, visualization, etc). It helps sometimes, especially when I'm going to bed at night or trying to wake up in the morning. Thankies muchly though for your concern. It's greatly appreciated :)

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RE: Fibromyalgia and treatment options? - 7/31/2009 6:27:55 PM

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Lots of good information. I have been battling fibro since 1995. I hurt so badly, i went to a pain management clinic. when i left, i had the diagnosis and enough meds, including narcotics, to prevent me from functioning on any level. but i did learn a few things.

First, my fibro was caused by another illness, viral... and stress. i had a rash from neck to toe. when that left, i ached in every joint, i couldnt even move my thumb. since then, every day is painful. but, as most of you know, you learn to cope. its slowly getting worse. i manage mostly on ibuprophen and hot baths.

one of the things i didnt see mentioned was what happens when you dont get REM sleep. Rem sleep is when your body heals all those tiny rips and tears to your muscles. not enough REM means more pain, which is why we always feel so much worse the next day. i discover that Advil PM works wonders, im just careful to take it only when i hurt.

so, each day your hurting, your adding more rips and tears. (forgive me if it seems like im rambling, im dealing with a fibro spike right now) too cold, indoors or out, can make it worse. sometimes ice works better than heat. took me a while playing with both to realize which and when.

Vit D... another good topic brought up, but, research it before you begin treating yourself. Vit D isnt absorbed in the absence of vit C... you have to take both. Also, mineral oil, even meds or foods containing such, can inactivate vit D. Antacids, diuretics, cortisones and other steroids can also prevent absorption.

Low impact exercise is best. Walking, biking, swimming... this is not a good time to take up yoga!

It can be bad. my mother ended up on disability from this disease. she has good days... and bad days... and still she hurts. we all hurt. but, if you notice, its primarily a disease of younger women, 30's to 50's. any wonder why they dont do more clinically?

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RE: Fibromyalgia and treatment options? - 7/31/2009 6:37:28 PM

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I didn't specifically address REM sleep, but I did talk about the need to determine which sleep disorders may be at work, as it is a very common part of the fibro puzzle. This was a good addition to that discussion. Thanks!

lovingpet

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RE: Fibromyalgia and treatment options? - 7/31/2009 6:47:26 PM

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They say we can't get into REM sleep, but I disagree because they also say that it is when we are in REM sleep that we dream. I can dream right after going to sleep. It is kind of like... pass out! Dream and be awake in an hour. So I believe we can get into REM sleep, we just can't stay in it. That alarm clock in your head goes off and the eyes open. Or pain wakes you.

Having a good sleep enviorment and trying to go to bed at the same time every night help. But there are times when you are just up for days. My longest was five days... not a wink. I knew what snow was but didn't know how to get it off my car. That's tired. I decided not to drive and go back in the house.

Anybody have any funny fibro moments?

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