# Fibromyalgia Support



## vwkitten (Apr 10, 2009)

I don't know if this should go in introductions or here, but ....

I post here a lot (maybe not as much as others, but a LOT for me).  I disappear for weeks at a time.  Sometimes I disappear to write, but sometimes I disappear because I'm too sick.  When I post (just like when I work/write), I do a lot at once, but then I drop everything for a week or two.  I'm not a flake.  I have fibromyalgia.  If you don't know what it is, that makes two of us.  It's a lot of different things for different people.  The overall qualifying symptom is constant, daily, pain.  For me, it means the pain plus... the plus is why I'm writing this here.  

Plus... I crash once a month or so.  Crash means that when I work hard at something, I then spend from 3-5 days as a drooling moron who can barely remember her own name and barely get out of bed.  After a bad crash, I don't remember what I was doing for the past six months or so.  They call it a fibrofog, I guess, though no one else I've talked with about fibromyalgia has fogs this bad.

Now I hate sob stories, I really do.  The sob story I hate the most is my own.  I hate telling it more than I hate living it.  But who takes you seriously when you can't build relationships with daily attention?  So, it's hard, but I'm asking... I'm asking for understanding.  Please mods, help me, because I even forget the rules... I've read them four times now.

I just wrote a book.  I wrote 7000 words per day on average.  It took me 20 days with breaks for minor brain fogs.  I hurt so bad, it's hard to breath at night, but I finished it.  I don't remember the four day crash that came at the end of it.  I just lost those days.  If I'd hit that big crash before the end of the book I was writing, I would have lost the whole book and where I was going with it.  This is my second book and a miracle to me for which I thank God.

So if I seem intense and driven one week, and almost a zombie the next, can we overlook the idea that I'm ... I don't know... but sometimes I feel like a stranger every time I come back...  I'm not mad at anyone really, just asking for help... and anyone else who has fibromyalgia or thinks they may, I'd love to talk with you, whether you know less or more than I do on it.


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## Forster (Mar 9, 2009)

Never heard of it before, sounds terrible.

At any rate did a search and it looks like there is a DVD regarding it. Didn't know if you were already aware of it or no so I posted the link anyway.

http://www.livingwithfm.com/


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## vwkitten (Apr 10, 2009)

Thanks for the search. My favorite website for information is:

http://www.wearefmily.com/faqs.htm


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## Anju  (Nov 8, 2008)

I have had several friends that have lived here with the exact same problem.  Of course a lot of folks that move here have some kind or another physical problem, vs. mental   , celiac, MS, crones, children, parents, etc., so we just deal with folks like they are ordinary folks, and that is the way I think of you kitten, just an ordinary gal - who happens to write.  So don't worry about it, we all love you anyway.


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## Thumper (Feb 26, 2009)

I have fibromyalgia, chronic myofascial pain syndrome, (DX in 1997 on both of those) and spinal/hip arthritis, so I have an idea where you're coming from. I'm fortunate in that I don't have the chronic fatigue that seems to


Spoiler



bitch-slap


 most PWFMS and I'm doubly fortunate that I had a pituitary tumor which made me eligible for HGH. That's got to be the thing that's benefited me the most. What I can mostly relate to is the crushing pain...it's hard to explain to someone who doesn't have it because for the most part people never experience pain that goes on for weeks on end without letting up.

I once tried to compile a book on FMS, using real-life stores from people who have it...it's extremely difficult to get a group of people with ongoing brain fog to write anything. When you're putting your milk in the dishwasher and you laundry in the fridge, you just can't think straight enough to cough out 2500 coherent words.


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## Chad Winters (Oct 28, 2008)

Oh, I hate that diagnosis....mainly because its so hard to treat. There have new some new meds that have finally been effective for some like Cymbalta and Lyrica. Savella is the newest and shows some promise. It would be nice to have effective treatments!


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## akpak (Mar 5, 2009)

I'm another fibromite. Recently DX'd, but I've known I had it for about three years. I go here for support:
http://www.healingwell.com/fibro/

The folks there are great!


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## Forster (Mar 9, 2009)

The important question is does this ailment qualify you for medical marijuana?


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## Thumper (Feb 26, 2009)

Forster said:


> The important question is does this ailment qualify you for medical marijuana?


I do know a few people here in CA who have gotten a card simply because they have FMS. Sometimes I am tempted, to be sure...if not for my weight and the munchies, I'd probably go for it.


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## KindleKay (aka #1652) (Jan 20, 2009)

Wow!  Your case sounds just awful!    I am so sorry!  I have never heard of the "fog" issue but I can certainly understand it.  In the last 6 months, I was diagnosed with Lupus, then they took it back and gave me a DX of Palindromic Rheumatism saying that my lupus factor is not active, but that it can go active at any point so I must be closely monitored.  I am on hydraoxychloraquine for it.  The main symptom of what I have is joint pain and fatigue.  Since being on the meds, I have only had about 2 or 3 flare ups, but they were certainly no joking matter.  

It is awful when it happens as people always want to know if I took pain med or what I need to do to feel better and, of course, there is nothing you can do to help feel better nor does taking my meds help!  Very disheartening.  Actually, when I was first diagnosed, several KB members reached out to me for support so I know that many of us are on here.  rho immediately comes to mind.  I think that the Kindle appeals to us all for the help it gives us with our hands.  I mean, holding a featherweight, little Kindle sure is better than a giant book!!

You are not alone and you have my prayers for your situation.  Thank you for sharing with us....


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## vwkitten (Apr 10, 2009)

Thumper said:


> I once tried to compile a book on FMS, using real-life stores from people who have it...it's extremely difficult to get a group of people with ongoing brain fog to write anything. When you're putting your milk in the dishwasher and you laundry in the fridge, you just can't think straight enough to cough out 2500 coherent words.


That's it exactly. I did it... I pounded out 7000 words a day (and you understand the miracle of that), but today I can't remember half of it. Today's a milk in the dishwasher kind of day.

I'm on the Lyrica, but it's fading... I'm going to try the links here so thanks to all for those. Marajuana - funny but while it might dull the pain, I fear the fog worse and it sounds like a perpetual fog to get into that... 

I could cough out those 2500 words except that I don't remember what it felt like to be healthy enough to write because I'm in a milk in the dishwasher day, and on an I can write 7000 words day, I don't remember what a bad day felt like. I just know the fear that grips me when I take on the project of writing a whole book and I have to pray that bad day doesn't hit before I get it done.


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## akpak (Mar 5, 2009)

My doctors tried me on Cymbalta, but it made the fog, fatigue and poor sleep even worse! I'm now on Pristiq (along with magnesium, vitamin D and B12), which is much better. I sleep better, my pain is less and the migraines are all but gone.


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## rho (Feb 12, 2009)

I so understand what you are saying - I was dx'd in the early 80's - and to this day I don't know what bothers me more - the fatigue, the pain, or the fog - The fog sucks when you are in the middle of a sentence with someone and it is gone - or a word is gone - or when you take an IQ test and realize that your IQ has dropped about 20 points .... the pain sucks - not being able to get pain meds suck - the fact that severely broken bones (spiral fracture, bones grinding together, 4 separate pieces of bone where they should be 1) is bad but you have had worse from the fibro - Frequently.  And the fatigue just plain sucks - 

I do the same thing - I will be very active on a forum then I will seem to disappear for awhile - usually I am here reading but I just don't have it in me to reply or post. 

And it especially sucks when your friends and family don't understand - that you feel like they do when they have the flu and go to bed because they feel so bad - but that can be how you feel on an ok day -- 

Another reason that Kindle is a wonderful thing - easy to hold, and many books available when you feel like crud...


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## vwkitten (Apr 10, 2009)

rho said:


> I so understand what you are saying - I was dx'd in the early 80's - and to this day I don't know what bothers me more - the fatigue, the pain, or the fog - The fog sucks when you are in the middle of a sentence with someone and it is gone - or a word is gone - or when you take an IQ test and realize that your IQ has dropped about 20 points .... the pain sucks - not being able to get pain meds suck - the fact that severely broken bones (spiral fracture, bones grinding together, 4 separate pieces of bone where they should be 1) is bad but you have had worse from the fibro - Frequently. And the fatigue just plain sucks -
> 
> I do the same thing - I will be very active on a forum then I will seem to disappear for awhile - usually I am here reading but I just don't have it in me to reply or post.
> 
> ...


yes yes and yes yes... it's so hard to explain. I went undiagnosed for 20 years. I'd been convinced there wasn't any pain and that it was just feeling pressure and that everyone felt like me. But I got over that... now I worry that I've actually admitted my illness before and don't remember so I'm repeating myself or not saying anything - lol. I tell people to imagine that movie 50 First Dates and add pain, a lot of it. It's not quite that bad, I don't think, but I cried and cried at that movie.

My family tries to understand but they forget until they have the flu... for me the pain isn't even categorized as pain in my head any more. Instead, I only know that when the meds are working, it feels like someone lets go of their paralyzing grip on the back of my neck.

I'm on Lyrica and b12... but I've never heard of Pristiq


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## Chad Winters (Oct 28, 2008)

I highly reccomend vit D.


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## vwkitten (Apr 10, 2009)

Chad Winters (#102) said:


> I highly reccomend vit D.


What dosage of vit D -- that's one I haven't tried yet...? *insert disclaimers here that I will not mistake this for medical advice -- ad naseum*


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## rho (Feb 12, 2009)

vwkitten said:


> now I worry that I've actually admitted my illness before and don't remember so I'm repeating myself or not saying anything - lol.


Oh you have no idea how many times I have that thought about things - well actually you do have an idea hehehe I am constantly worrying that I am repeating things


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## vwkitten (Apr 10, 2009)

Well you don't have to worry about repeating yourself with me... even if you do, I won't remember from the first time you said it.... lol


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## rho (Feb 12, 2009)

I've often said that one of the benefits of fibro is I can read and reread and then reread a book again and enjoy it every time because I forgot so much of it


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## MAGreen (Jan 5, 2009)

Ok, this is a little scary. You are all describing something similar to my pain. It's mostly in my neck and shoulders and seems to be getting more constant as I head toward 30. I always have headaches because of it and get a lot of migraines. I also go through days where I am so foggy and can hardly add 2+2. I have had to force myself to take care of the basics, change diapers and feed kids...otherwise I lay here and just pray for the pain to stop. If I rest enough it seems to manageable, but I worry it will get worse over time. Right now I only have maybe one or two really bad days a month, but five years ago I would only have one bad day every 3 months...and 5 years before that it was one bad day every 6 months. I keep saying I need to see my doctor, but when the pain is bad, it's too much effort and when I feel better it seems silly to go see a doctor when I am not sick. I'm not crazy or a big sissy am I? 
PS I love your stories Kitten! Thank you for making the effort!


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## KindleKay (aka #1652) (Jan 20, 2009)

MAGreen...you need to see a rheumatologist.  Sounds like you may possibly be a part of the club    But there are meds to manage it if you can find the right doseage....


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## vwkitten (Apr 10, 2009)

MAGreen said:


> Ok, this is a little scary. You are all describing something similar to my pain. It's mostly in my neck and shoulders and seems to be getting more constant as I head toward 30. I always have headaches because of it and get a lot of migraines. I also go through days where I am so foggy and can hardly add 2+2. I have had to force myself to take care of the basics, change diapers and feed kids...otherwise I lay here and just pray for the pain to stop. If I rest enough it seems to manageable, but I worry it will get worse over time. Right now I only have maybe one or two really bad days a month, but five years ago I would only have one bad day every 3 months...and 5 years before that it was one bad day every 6 months. I keep saying I need to see my doctor, but when the pain is bad, it's too much effort and when I feel better it seems silly to go see a doctor when I am not sick. I'm not crazy or a big sissy am I?
> PS I love your stories Kitten! Thank you for making the effort!


Not crazy. Not a big sissy. I thought the same things. Did you know that there are pressure points on your body that aren't supposed to hurt? The ones above my knees proved it to me. I kept touching them and feeling big pain, and then asking my husband and brother if they felt pain at the same amount of pressure. Nope. Did you know that while lots of people complain of back pain when they get weary, that they don't feel it every day for years? I didn't know those things.

My point is that it's a simple pressure point test. Ask your doctor for it. What can it hurt. He presses several pressure points (and it's not a poke, it's a light pressing, like you'd use to push those big buttons on kid's toys), and if more than a certain percent of them hurt....well, then you get to start worrying about what to do about it.

And thanks for the encouragement -- I need that on days like this...


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## MAGreen (Jan 5, 2009)

I guess it is time to make that appointment. Has anyone tried accupuncture? I know it is supposed to be really helpful with some pain disorders. It's funny (not really) that you mention pressure points...I always just thought I was sensitive. My son climbs on me sometimes and it's like going 10 rounds with a heavy weight. There a post somewhere with a "spoon theory"...I will have to see if I can find it again. I'm not even sure it was here, but it's a pretty good description of living with most chronic disorders. 
Anyway, I am off to bed. Here's to hoping we all can get a good night's rest and feel good tomorrow.


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## Chad Winters (Oct 28, 2008)

vwkitten said:


> What dosage of vit D -- that's one I haven't tried yet...? *insert disclaimers here that I will not mistake this for medical advice -- ad naseum*


http://www.uptodate.com/online/content/topic.do?topicKey=endocrin/5765&selectedTitle=1~150&source=search_result
TREATMENT:

Vitamin D supplements - There are many types of vitamin D preparations available for the treatment of vitamin D deficiency or insufficiency. The two commonly available forms of vitamin D supplements are ergocalciferol (vitamin D2) and cholecalciferol (vitamin D3). We suggest vitamin D3 when possible, rather than vitamin D2, because vitamin D3 is the naturally occurring form of the vitamin and it may raise vitamin D levels more effectively.

Dosing - The recommended dose of vitamin D depends upon the nature and severity of the vitamin D deficiency.

In people who do not have problems absorbing vitamin D:

In people whose 25OHD is <20 ng/mL [50 nmol/L]), treatment usually includes 50,000 international units of vitamin D2 or D3 by mouth once or more per week for six to eight weeks, and then 800 to 1000 (or more) international units of vitamin D3 daily thereafter.

In people whose 25OHD is 20 to 30 ng/mL [50 to 75 nmol/L]), treatment usually includes 800 to 1000 international units of vitamin D3 by mouth daily, usually for a three month period. However, many individuals will need higher doses. The "ideal" dose of vitamin D is determined by testing the individual's 25OHD level, and increasing the vitamin D dose if the level is not within normal limits.

In infants and children whose 25OHD is <20 ng/mL [50 nmol/L]), treatment usually includes 1000 to 5000 international units of vitamin D2 by mouth per day (depending on the age of the child) for two to three months.

In people who have diseases or conditions that prevent them from absorbing vitamin D normally (eg, kidney or liver disease), the recommended dose of vitamin D will be determined on an individual basis.

In people whose vitamin D level is normal (>30 ng/mL [≥75 nmol/L]), a dose of 800 international units of vitamin D per day is usually recommended. (See "Prevention" below).


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## Thumper (Feb 26, 2009)

Question for those trying Lyrica: are you battling the weight gain that seems to be a common side effect?


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## rho (Feb 12, 2009)

MAGreen said:


> I guess it is time to make that appointment. Has anyone tried accupuncture? I know it is supposed to be really helpful with some pain disorders. It's funny (not really) that you mention pressure points...I always just thought I was sensitive. My son climbs on me sometimes and it's like going 10 rounds with a heavy weight. There a post somewhere with a "spoon theory"...I will have to see if I can find it again. I'm not even sure it was here, but it's a pretty good description of living with most chronic disorders.
> Anyway, I am off to bed. Here's to hoping we all can get a good night's rest and feel good tomorrow.


I have had acupuncture when I was in the start of a huge flare and it did ease it for me - to the extent I was able to stop and shop on the way home - when I was almost in tears with the effort of going to the appointment - but my insurance doesn't cover acupuncture so I don't go anymore - I would say it brought me down from a 9 on the pain scale to a 5 which is huge to me 

I would definitely say see a doctor though - you could also have something more treatable - do you grind your teeth that can cause huge neck pain and headaches too - worth checking into at least - and they will check all kinds of things on the road to the fibro dx.


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## rho (Feb 12, 2009)

vwkitten said:


> Not crazy. Not a big sissy. I thought the same things. Did you know that there are pressure points on your body that aren't supposed to hurt? The ones above my knees proved it to me. I kept touching them and feeling big pain, and then asking my husband and brother if they felt pain at the same amount of pressure. Nope. Did you know that while lots of people complain of back pain when they get weary, that they don't feel it every day for years? I didn't know those things.
> 
> My point is that it's a simple pressure point test. Ask your doctor for it. What can it hurt. He presses several pressure points (and it's not a poke, it's a light pressing, like you'd use to push those big buttons on kid's toys), and if more than a certain percent of them hurt....well, then you get to start worrying about what to do about it.
> 
> And thanks for the encouragement -- I need that on days like this...


here is a story that you will relate to and will make you all laugh -- I had had doctors do the pressure test before I went to a rheumy for confirmation - and it hurt for sure -- but when I went to him - and he pressed on the points I literally tried to scoot away from him across the table - it hurt that bad - guess he really knew where those suckers were and exactly how much pressure to put on them 

I'm also doing vit D along with calcium since I have been breaking bones despite my bone density test being good - so ortho recommended I up them ...


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## Brenda M. (Nov 26, 2008)

Raising hand here. I have fibro too. I am on Cymbalta and it has helped. I lost weight last year so don't want to try Lyrica. Although sometimes when I am feeling particularly yucky, I do want to try it. 

When I was first diagnosed and at my worst my doctor recommended B12 and magnesium injections. Magnesium helps a LOT, but to take such a high dose orally, you end up with some not so pleasant side effects. So, injections are the better way to go for a while. I was doing mag injections every week and B12 every other week. I can't remember how long I did this, 6 months maybe? 

Now I take mag orally along with other supplements. I also have Hashimoto's which made me hypothyroid. I am on a large dose of Armour Thyroid for that, and it's helped a lot as well. I don't take prescription pain meds, but do take prescription Naproxen (Aleve) twice a day. 

I, too, get tired of acting "normal" all the time when I am not. My husband and I went for a walk last night and I just couldn't make it our normal length. He was giving me a hard time about "well you used to be able to do this". Sorry... I am just really hurting right now. He was nice about it, but it still bugged me. 

I read a TON about fibro and thyroid issues when I was first diagnosed. Another site is: www.immunesupport.com.


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## MAGreen (Jan 5, 2009)

Thank you rho, I am hoping it is something more fixable! This is not a club I look forward to joining, no matter how cool I think the other members are! I have been looking at symptoms and there are actually 3 or 4 things that match well, fibro is one of them. 
Brenda, my husband is the same way, as caring as he is, he always manages to say things that are hurtful. I think it has more to do with his own frustration about the pain than anything else. Men hate when they can't fix something, and are very cranky when the woman they love is hurting.


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## kari (Feb 15, 2009)

Remember there is no blood test (yet) to diagnose Fibromyalgia.  It is often given as a diagnosis when everything else has been ruled out...when the symptoms fit of course.  But it's best to rule out other (possibly more treatable) conditions before assuming one has Fibro.


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## rho (Feb 12, 2009)

Brenda M. said:


> I, too, get tired of acting "normal" all the time when I am not. My husband and I went for a walk last night and I just couldn't make it our normal length. He was giving me a hard time about "well you used to be able to do this". Sorry... I am just really hurting right now. He was nice about it, but it still bugged me.


I get that a lot unfortunately - like the time we were at Disney and I was feeling that I was doing pretty good with how bad I was feeling - and hubby says - "No one wants to wait while you sit down for a few minutes every so often - you HAVE to get in shape" really destroyed me .... that was the same trip that a few nights before I hit the wall and couldn't stay for the night parade - didn't ask anyone else to leave and the only way I made it back to the bus was to literally count steps 1, 2, 3, 4, -- I started counting 10 at a time by the time I got there I was doing 1,2 -- and by the time I made it to the room I was in tears.. .

Hubby is always telling me I have to get in shape - I am tired of _*trying*_ to explain - and I am tired of trying to pretend things don't hurt when things are screaming at me - and today I am just plain tired - and have to go to a knitting circle at the local museum where we will sit in a barn and watch over dolls that are for sale and sell if people come in - and it is going to be pouring soon! And I don't even know what I am going to bring to knit...

AND I am cranky today too boot - can ya all tell


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## vwkitten (Apr 10, 2009)

Thumper said:


> Question for those trying Lyrica: are you battling the weight gain that seems to be a common side effect?


Yes, I'm battling the weight gain.

Getting in shape... dang I Know it would help to lose weight. I hear that Yoga is a way to exercise for us. The stretching of the muscles can actually calm some of the effects of the FM rather than aggravating them like walking. I heard someone explain FM as always walking around with all our muscles tense all the time. A muscle burns as much energy stretching as it does pounding...

But here's a little known fibro-fact: Most people who are struck by this disease are intense, driven people. It takes all our intensity and drive just to barrel through the fog and pain. While I don't think our intensity and drive brought on this disease, I think maybe (and don't hang me for throwing out the G word) it's a gift God gives us to help us get through it. I haven't talked to, met, or heard of a single fibro-inflicted person, current company included, who doesn't put their heads down and push through to try to act as normal as we look.

So... bravo! for getting up this morning. Bravo for posting here and baring your stories! From someone who's hurting too, Bravo for working through every day... and thank you for giving me a hand by being there.


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## Anju  (Nov 8, 2008)

I honestly can't say a whole lot about fibro, other than I do know some people here that have been diagnosed with it.  One lady does t'ai chi, the Taoist variety.  Some of you that have Taoist t'ai chi in your area, you might check it out.  It is not a strong movement, it is soft and gentle and good for arthritis as well as balance.  I only have Georgina's experience to go on so don't know if it would help the rest of you, but if you are thinking of yoga, you might consider this as well or instead.

Did any of you ever think you would find a support group in an electronic book forum?


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## akpak (Mar 5, 2009)

Here is my daily regimen of meds:
Magnesium/Malic Acid/Folic Acid (http://www.jigsawhealth.com/products/magnesium_supplement.html)
Vitamin B12 1000
Vitamin D3 2000
Pristiq 30mg

I like it because apart from Pristiq it's all natural supplements, and nothing that wouldn't be good for me anyway.

I'm sleeping better, the pain is a lot more manageable and the migraines are all but gone. The fatigue and low energy reserves are still around, but reduced pain makes everything else more bearable.

Still have the tinnitus, the occasional fog, the occasional stomach irritation/cramps/nausea, and some dizziness.

But things are Better, no doubt.


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## VictoriaP (Mar 1, 2009)

Warning: Post is likely to be rambling. Fog is a bit of a problem today! I'll see if I can pull some coherence from the swirl in my head.

First and foremost on the Vitamin D: Do not self diagnose this one. While adding a D-3 supplement is probably a good thing, D toxicity is a problem you want to avoid. Do a little research on the Vit D deficiency, and then call your doctor to set up a blood test. Of course, the next problem is that the range of what's considered "normal" varies from doctor to doctor. And **if** you are deficient, your doctor's idea of how to treat it may vary as well. I had three diagnoses of it last year from a general practitioner, a neurologist, and a rheumatologist, and the prescriptions varied from take 1 1000 IU capsule a day to my current dose of 50,000 IU every other day! There's a pretty damn big difference there--and in my case, the latter (which is an obscenely high dose) is the only one to show any effect. Definitely do some research first and find out where your doctor stands on the issue.

On the neck & migraine issue: Welcome to my world for nearly 30 years now. While certainly neck & head issues can be autoimmune related, like everything else there are plenty of other causes you need to investigate as well. I was 18 when a chiropractor took xrays (something none of the previous doctors did) and found I had scoliosis of the neck in two different directions. Add on that I carry all my stress in my neck & shoulders, and it's not terribly surprising to find I have migraines 2-3x a week. Depending on the type of migraine you have, you may have major risks for heart or stroke issues--this is another problem you can't afford to ignore. Find a neuro who actually specializes in migraine though; my first neuro last year ran through a bunch of options with me, but as it turned out, he left out quite a few that the second neuro was surprised at (and she's still not a migraine specialist, we'll get to that in a minute). What I learned there was that even within a medical specialty, doctors are going to further specialize, and you need to know WHAT their pet interests are. There are a ton of different treatments out there, including preventatives such as Topamax and even treatments with Botox (Tried both; Topamax is great for a lot of people, but I had a serious reaction to it. Botox took away my forehead wrinkles--and any ability to move my eyebrows! LOL--but made no dent in the headaches.)

Here's the Spoon Theory, for those who haven't read it. It's a PDF, put it on your Kindle. 

http://www.google.com/url?sa=t&ct=res&cd=2&url=http%3A%2F%2Fbutyoudontlooksick.com%2Fnavigation%2FBYDLS-TheSpoonTheory.pdf&ei=PbdoSrbdM5GwswPp5bGWBQ&rct=j&q=spoon+theory&usg=AFQjCNGEOnyg3o6Blp4J3Dlyb_mGMI8TWg

Read it. Share it with your family and friends so they may understand you a little better. I've got an extremely supportive husband, but he still didn't quite "get it" until I made him read this. Now he'll ask me if I have enough spoons to do something. 

_The rest of this post is my experience--totally optional reading! Moral of the story below: Do go to the doctor. Make sure it's a good one. Do compile a list of everything you're experiencing. Don't accept a dismissive answer on anything unless it's coming from someone who actually *specializes* in the disease you're investigating. _

So it's obvious I've seen way too many doctors in the last year. What started this journey?

I work for a high tech company where stress and fatigue are the norm. The chronic migraines made that all the more evident, and and the three together were rather neatly disguising other issues. Anytime I felt crappy, it was so easy to just go the "well, it's the job" route, or blame it on the post headache crud, etc. I was holding down a full time job & building towards a full time business on the side. I was tired all the time, but I expected it.

Early in the year, I finally completely lost it when one too many catastrophic events hit in too short a period, and I ended up on leave for major depression. The psychiatrists added a diagnosis for generalized anxiety disorder, and later one for adult ADHD--I apparently tested off the charts for that one. LOL As the year progressed, the depression wasn't responding to any treatment, which was odd, and the fatigue, which everyone assumed would go away now that I wasn't working actually seemed to be worse. By summer I was developing physical symptoms that finally had the psych team send me to a neurologist. That first neuro was the one treating my migraines; he ordered an MRI, though he said flat out he wasn't expecting to see anything. He was damn surprised when it came back with some abnormalities the radiologist wasn't too keen on. Ran some additional tests for MS, all of which came back clean, so he announced that it all was due to the antidepressants. The psych team was not amused, and while decreasing dosages according to his suggestion, they requested a second neuro opinion. Changing meds & doses had zero effect.

The second neuro is the best known MS doctor in the area. Further testing under her revealed more issues, but not quite what she wanted to see for a definitive answer. Her first reaction, based on the radiology reports, was to say it was MS; a month later, she backed down to possible/probable. A couple of prescriptions to try and treat the symptoms, let's retest in June/July. Meanwhile the psych team suggested a rheumatologist--the depression and anxiety were under control, but all the physical/cognitive problems were still there. Thank God for their willingness to push me to look at all possible issues. I probably wouldn't have seen either doctor if I hadn't been basically ordered to.

The rheumatologist specializes in chronic fatigue and fibro, but he's an absolute friggin genius as far as just about anything in his field. He found problem #1, Sjogrens, a inflammatory disease I'd never heard of and couldn't pronounce. This one was interesting since he chased it down by asking about symptoms I had never thought to tell anyone. Remember the whole stress and fatigue thing & how it makes everything easy to dismiss? My eyes would ache, and I just assumed it was fatigue along with too much computer time. Or maybe it was time for reading glasses. Try again. One thing Sjogren's does is attack all the moisture producing glands in your body. The dry mouth and dry eyes I had weren't from the prescriptions I was taking. But that's just not something I would have ever thought to mention!

He's also the first doctor in this process to say, "Well, I don't have a 100% definitive diagnosis here, but I'm fairly certain. You can choose to treat the symptoms, or we can try to attack this at the source." Everyone else has had a bit of a wait-and-see-until-you-perfectly-fit-the-criteria attitude, or has dismissed the issues as being from some other known problem I have. He also is the one who prescribed the ridiculous amount of vitamin D--one of the only two treatments that have produced any results. The primary treatment used to mitigate Sjogrens is methotrexate, which is also used for rheumatoid arthritis; it's not a fun drug by any standards, but it IS working. Joint pain is way down, balance is mostly stable again, most of the numbness in both hands and feet are gone. And my eyes don't hurt constantly any more! Even the headaches are down a bit, since the arthritis caused by the neck issues is somewhat mitigated by the reduction in joint inflammation.

The latest 2 hour MRI was last Saturday. Monday I had a call from the neuro's office with the "we want to review your test results with you in person" message, and an appointment set up for next week. This woman is NEVER available that soon unless it's urgent; this should have been a test results by phone or a follow up a month out or so--obviously something is up. Since we've been in a heat wave for the last two weeks, the worst of all the symptoms has been fully flared up. The fatigue has been so bad, I spent all of that time in bed--not on the laptop, not reading, just zoned out or asleep for 22 hours of every day. There's a pretty fair chance we've got more info from that MRI that brings us closer to an MS diagnosis. As my rheumo puts it about having both, "I don't see it often, but some people just roll snake eyes." LOL

Needless to say, I'm still at home. The business is closed. I'm still on leave (hard to work when you only have 4-5 good hours in a day). The depression that kicked all this off is under control, I'm not taking any bad falls, and I just generally don't feel as bad physically. Unfortunately, I'm still left with the inability to multitask AT ALL (can't follow a conversation with the TV on, for example, can't be on the phone & loading the dishwasher, heck, I can't follow a conversation that has more than two people involved), major short term memory issues, and absolutely crippling fatigue. And in the last two weeks, both the dizziness and the tingling/numbness are back, though muted compared to where they were. The few cooler days we've had during this period are the only relief I've had from this flare. I'm almost hoping the neuro has some answers this time; they won't be answers I like, but they'd come with some treatment options and by now, almost 18 months after this began, I'll take anything that might offer some help!


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## vwkitten (Apr 10, 2009)

First wow... I actually managed to read it.  That's not a dig.  You also managed to write it... good job.

All I've got is some stats for you.  I've been diagnosed with FM and I'm sick to death of being pushed into depression medicines that only make the fog worse.  I could handle the daily pain (ok except really bad days that - like you're saying - keep you in bed for 22 hours a day), and the weekly migraines, and the tenderness of my muscles, and the emotional mood-swings (that I think are natural and heroically managed with all the physical swings my body goes on).... what I can't handle is that fog that steals my memory and my ability to focus.

I am also sensitive to heat, noise, light, smell, humidity, and idiocy (but I think the last one is just a personal trait   )

Don't you think it's amazing that most of us have taken charge of our healing?  I think that's another trait that makes us special...


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## sjc (Oct 29, 2008)

My mother has suffered with it for years and Trigeminal Neuralgia as well.  Both very uncomfortable.  The Trigeminal is really bad; as it effects the face.

All the best.


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## vwkitten (Apr 10, 2009)

Does anyone know if we've got a ribbon color or is that just cancer types...?


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## rho (Feb 12, 2009)

our ribbon is purple and sometimes is made up of butterflies -- very pretty 

http://www.zazzle.com/fibromyalgia_awareness_button-145605153000644059


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## VictoriaP (Mar 1, 2009)

vwkitten said:


> First wow... I actually managed to read it. That's not a dig. You also managed to write it... good job.
> 
> All I've got is some stats for you. I've been diagnosed with FM and I'm sick to death of being pushed into depression medicines that only make the fog worse. I could handle the daily pain (ok except really bad days that - like you're saying - keep you in bed for 22 hours a day), and the weekly migraines, and the tenderness of my muscles, and the emotional mood-swings (that I think are natural and heroically managed with all the physical swings my body goes on).... what I can't handle is that fog that steals my memory and my ability to focus.
> 
> ...


LOL--couldn't write it now, that's for sure! It's one of those days where I'm looking around going, "Where did my energy go? It was around here somewhere..."

I have gone completely off all meds & back on. For me, the fundamentals don't seem to change, and nothing related to the cognitive problems changed--the reality being that with white matter lesions in so many areas of my brain, there's a lot that may never be the same. Then add in the deficits that chronic pain and fatigue cause, and you can pretty much kiss off any chance I'll remember a darn thing! Much of the last year has been spent trying to adjust my thinking to the new "normal"--and then days like today don't even match that image. LOL

I think it's unfortunate that we HAVE to take charge of our healing. I know I'm the least qualified person at this point to handle that level of responsibility, both by education and by physical/mental ability. But that's life.


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## Thumper (Feb 26, 2009)

vwkitten said:


> Don't you think it's amazing that most of us have taken charge of our healing? I think that's another trait that makes us special...


It's not like the medical community did such a bang up job with that until recently...we didn't have much choice.

Really, when I was dx'd I got 99% of my information from a FMS newsgroup...those people may have saved my sanity. Or what little I actually had, that might be up for debate


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## vwkitten (Apr 10, 2009)

Personally, I'm starting to come out of this fog, so it's time for me to get back to work work work.

That ribbon is wonderful -- now that I know, I'm going to use it.  Butterflies.  Neat.  Thanks.


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## vwkitten (Apr 10, 2009)

Came out of the fog and plunged back in -- I kept thinking -- hey, there's this thread... and I came back and LOL.

Anyway, just a note - I'm still here.  I'm trying to remember where I put that milk... oh yeah, the dishwasher.


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## Thumper (Feb 26, 2009)

Go ahead...drink that milk


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## akpak (Mar 5, 2009)

Spent today in what I'm calling "fibro-flu." Second time it's happened now, felt so nauseous all day all I could do is lay in bed and whimper. Wish I knew what that was all about. :/


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## vwkitten (Apr 10, 2009)

Thumper said:


> Go ahead...drink that milk


ROFL -- oh yeah... that sounds yummy... btw - Thumper, I'll give you those 2500 words anytime... just remind me what I'm supposed to write about again...


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## vwkitten (Apr 10, 2009)

akjak said:


> Spent today in what I'm calling "fibro-flu." Second time it's happened now, felt so nauseous all day all I could do is lay in bed and whimper. Wish I knew what that was all about. :/


Ah sweetie. We could speculate all day, but we all wish we knew too. Our sincere empathy is with you though and the fog WILL clear. Drink lots of water and forgive yourself. Those are all that ever help me (and I have the roughest time with the forgiveness part).

Hugs,
Trish


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## Anju  (Nov 8, 2008)

I forgive all of you all of the time!


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## vwkitten (Apr 10, 2009)

Anju No. 469 said:


> I forgive all of you all of the time!


Woot -- that helps me smile.


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## rho (Feb 12, 2009)

I wanted to mention - before I forget again - that a few years ago I tried the MBT shoes - and they are very good for me - I find that I have less pain wearing them - in fact I just ordered a pair of sandals and a pair of mary jane style in them -- they are ridiculously expensive but worth it .


rho - who is feeling particularly cruddy because of the heat and humidity - off soon to read in the air conditioned bed room ...


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## vwkitten (Apr 10, 2009)

rho said:


> rho - who is feeling particularly cruddy because of the heat and humidity - off soon to read in the air conditioned bed room ...


heat and humidity mess you up too? I didn't read anyone else having that problem -- I thought it was just me.


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## VictoriaP (Mar 1, 2009)

Heat's one of those things that often causes flares in the various autoimmune illnesses--I know I have that problem this year as the Seattle area has had a ridiculously abnormally warm spring & summer.  And of course, none of us have central air!  Hadn't seen that it affects fibro patients as well, but it really wouldn't surprise me given the connections between all those diseases.

Hope the a/c helps, rho!


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## vwkitten (Apr 10, 2009)

Here in Vegas it gets hot, but not humid.  I can handle that... but put me in a hot shower and I'm knocked out for a few hours... which is a bummer since I love hot showers.


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## Thumper (Feb 26, 2009)

vwkitten said:


> heat and humidity mess you up too? I didn't read anyone else having that problem -- I thought it was just me.


Heat + humidity + me is why we decided to never live in Texas again. I'm not sure it's the FMS, but it wipes me out.

Granted, I only have about a 5 degree range where I'm really comfortable, so I may just be a weenie.


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## vwkitten (Apr 10, 2009)

Me too... I keep the house at 69 degrees (colder is ok but no one can stand it but me).  If it goes up above 73, I'm getting miserable.


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## rho (Feb 12, 2009)

sorry - haven't been on much - too hot to sit with laptop for long - and I can't wait for fall - cool days and cooler nights - sounds like heaven to me - yesterday everything hurt - bleech....


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## vwkitten (Apr 10, 2009)

So I wake up one morning and I haven't been on kindleboards in over 3 months, I've written 5 chapters in my new book, and I don't know or understand any of it.  Does this level of disorientation hit any of you?

It's so hard to keep friends when my mind gets positively buried in something (I don't understand what) and when I "wake up" (for lack of a better term), I feel like I have to start all over on any relationships.


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## MAGreen (Jan 5, 2009)

My headaches do that to me sometimes, I get to a point that I can't take the pain, so I avoid anything that might make it hurt again, which means no going outside or looking at the computer screen. 
Welcome back!


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## akpak (Mar 5, 2009)

I've only had one really bad "fog" period, when they had me on Cymbalta. Those two weeks are a total blur of insomnia and cranky.

Welcome back, and I'm sure you'll get your stride back with your writing


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## vwkitten (Apr 10, 2009)

I don't feel like the fog clears for long since I started taking Lyrica but I can't stay awake without it (and my thyroid med is at the right level).

Thanks for the welcome back. =)


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## Brenda M. (Nov 26, 2008)

I was going to ask if you are on Cymbalta. I've been on it for 5 years now and didn't realize how much it has helped me. But, for me it's mostly the pain. My new insurance comany wants prior approval and has already rejected it once. I tried to wean off of it and could not believe how much pain I was in! I now have samples from the doctor while he wrote an appeal letter.


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