Anyone else dealing with fibromyalgia? - Page 4

[Arianwen1174]

Ugh, so sorry about all those medical issues, paintedfire! I was wondering, do your docs know why you have the vertigo? I was DX'd with BPPV (benign paroxysmal positional vertigo) about a year ago but I also get vertigo attacks that have nothing to do with position. I hate it so much! What I hate even more is that there's not a lot that can be done about it. Anyway, glad you're here!

[paintedfire]

Originally Posted by Arianwen1174

Ugh, so sorry about all those medical issues, paintedfire! I was wondering, do your docs know why you have the vertigo? I was DX'd with BPPV (benign paroxysmal positional vertigo) about a year ago but I also get vertigo attacks that have nothing to do with position. I hate it so much! What I hate even more is that there's not a lot that can be done about it. Anyway, glad you're here!

Thanks. I've been sick nearly all my life (had pneumonia for the first time when I was three-months-old and it just never stopped). I was officially diagnosed with lupus when I was eleven but the symptoms where there pretty much my entire life.

As far as the vertigo goes, my doctors have a theory that it may have something to do with the "accident" I had when I was nine. One of the surgeries I had while in the coma was to remove part of my skull to help relieve the pressure that was building inside of my brain (the pressure and the bleeding being the cause of the coma).

Basically, if it's not that it's that I also have some sort of neurological disorder. I haven't had an MRI on my brain and/or spine since I was about sixteen, so while it's rare for someone to have both lupus and something like Multiple Sclerosis (one possibility) or Parkinson's (another possibility as my great-grandfather died of complications stemming from Parkinson's, although this wouldn't show up on an MRI).

I had the MRI planned for a little while and then found out I was pregnant. Even though MRI's don't contain any radiation (just a very, very large magnet), my doctor agreed that it would be fine to wait until I'm further along if it would help me feel better.

I'm very lucky to have found a team of physician's that are completely willing to work in concert with me and one another. It's one of the things thats given me the most confidence in being able to handle a pregnancy.

[tireesix]

Paintedfire....... You just verify what I think, I am lucky to have what I do have cos it could be worse!!!!!!

That totally sucks!

A lot of my Docs kept saying I just suffered from depression because of the way my life is, I never thought that possible because no matter what our living conditions etc, I always see the positive, at least I have a roof over my head, at least I can still kinda walk etc etc etc.

We are the same age too!!!!!

How are you finding the pregnancy? I wasn't diagnosed with any of my crap until after my second (OK, I was diagnosed with EDS after my second was born which totally sucks because that is the definite genetic one), I was told to not have anymore children but ended up with number 3 and it was after number 3 was born that I I found out I definitely had fibro etc, not sure how much that sucks yet, there are implications that it could be genetic, I have a friend who suffers and has two children with it and I am 100% positive my 4 year old has it although no one is prepared to diagnose her, yet (I am working on it, if it isn't, thats cool, but too much matches up with me).

I found my first and third pregnancies easiest, the second was the worst but I went into that one totally unhealthy etc.

You wouldn't happen to be hyper mobile as well????

[paintedfire]

Originally Posted by tireesix

Paintedfire....... You just verify what I think, I am lucky to have what I do have cos it could be worse!!!!!!

That totally sucks!

A lot of my Docs kept saying I just suffered from depression because of the way my life is, I never thought that possible because no matter what our living conditions etc, I always see the positive, at least I have a roof over my head, at least I can still kinda walk etc etc etc.

We are the same age too!!!!!

How are you finding the pregnancy? I wasn't diagnosed with any of my crap until after my second (OK, I was diagnosed with EDS after my second was born which totally sucks because that is the definite genetic one), I was told to not have anymore children but ended up with number 3 and it was after number 3 was born that I I found out I definitely had fibro etc, not sure how much that sucks yet, there are implications that it could be genetic, I have a friend who suffers and has two children with it and I am 100% positive my 4 year old has it although no one is prepared to diagnose her, yet (I am working on it, if it isn't, thats cool, but too much matches up with me).

I found my first and third pregnancies easiest, the second was the worst but I went into that one totally unhealthy etc.

You wouldn't happen to be hyper mobile as well????

Glad I could be of assistance!

Depression (or any kind of mental illness, really) runs in my family. My grandmother was schizophrenic; my great-grandmother killed herself with rat poison, of all things; I have a cousin who jumped from the roof of a twenty-four story office building in Chicago and LIVED; my biological-mother had narcissistic personality disorder; my brother suffers from depression, as does my Mom; a great-great-grandfather shot his wife and them himself; and so on, and so on. We're kinda just chock full 'o the crazy. Add to that my history and all of my illnesses and it's just the way that it is. I try my best to be realistic about things. I've been in therapy twice a week since I as ten - I turn thirty in a few months and I have no intention of stopping any time soon.

Pregnancy so far has been really good to me, other than the fact that morning sickness is making me heave anything I put in my mouth that doesn't have a particular craving attached to it. I've lost ten pounds since February. I had an ear infection, went to the doctor, was weighed, and turned out to be 107 pounds! My hyperthyroidism makes it hard to keep weight on in the first place, then you add in all my meds and it's like I'm Sisyphus - pushing the boulder up the hill only to watch it roll back down again before I can reach the top.

There's so much going on in my life right now: I'm changing jobs, DF and I finally moved into our house, I'm getting married this August, etc.. I have to work really hard at staying calm and not freaking out; but so far, so good.

The only things that are worse right now - other than the morning sickness - are that my back is bothering me more than it usually does and the pain in my legs keeps going back and forth between non-existent to kill me now.

I try not to let myself worry too much about the possible genetic factors. I used to be dead-set against having children at all because of all the mental disease in my family history, but realized that was just a cop-out for me. I love kids. I want kids. I've already made the promise to myself not to let the mistakes of the past repeat themselves and I've got the greatest partner in the world, so I'm trying to look on the bright side of things - not my natural inclination.

I'm not hyper mobile, no. I have arthritis and the lupus causes random swelling of my joints, but I can't even crack my knuckles. Nor can I whistle, but that has nothing to do with anything does it?

[tireesix]

I was dead set against having kids originally cos my family is also kinda crazy........ No actual suicides, plenty of attempted and I just didn't want to bring a kid into it, then I found out I had PCOS and thought, well thats kid, I can't have them anyway......... Then I met DH and everything kinda changed, needed help conceiving DD1 but from then on it was all natural (and very surprising PMSL...... I discovered I react to contraceptives so everything I tried I got taken off and ended up with 3 kids instead of one lolol. I got my tubes done and an ablasion so I am pretty sure its not going to happen again but DH seems to have super sperm, because I suffer so much nausea and sickness everyone is accusing me of being pregnant despite knowing that I am about as done as done can be with my uterus (the only thing left is having the damn thing totally removed lol).

I thought of hyper mobility because some of us with the syndrome (HMS/EDS although I am only suspected of having EDS 3 apparently it could be another type of EDS but not been checked out and NHS funding is limited lol), anyway, yes, those of us with HMS/EDS tend to suffer from phobias and mental health issues more than most, for instance, I have arachnaphobia and social phobia and an intense fear of the future (to the point of panic attacks). I don't mind dieing, not bothered about getting old, its just THE FUTURE. Totally freaks me out, as does space and the universe (again, to the point of panic attacks (this is a secret of mine, you are the only people who know this, I refuse to let my DH have another thing to tease me about and my Docs are definitely not to know!!!!)....... I gaze up in the nights sky and I get lost in it, totally lost, maybe its a more extreme kind of agoraphobia, not really bothered about open spaces on this planet, move it up a notch to the galaxy and beyond and I am done in!!!!!!!!

When I was pregnant with my last child, we had a stressful time, moving house, both me and DH sick, 2 kids to think about as well, major money issues as neither of us can work, we had literally 2 weeks notice of moving,signed tenancy agreement 1 day before the move and I was 32 weeks pregnant at the time and in the process of coming off of an opioid pain killer in preparation for a home birth....... (Home birth turned into an unplanned free birth, just what I needed but it was fantastic!).

My back was awful during the pregnancies, apart from the fibro affecting it, my back is also my most hyper mobile part of me, like, physios use me as an example to their students type hypermobile (oh, rheumatologists too, I stand there (ior lie there) in pain and they are poking me, putting their weight on my back and bending me this way and that way, narrowly avoiding dislocating me, just to show their students what is not normal in the human body........... I only put up with it because its good for students to see and practice and be able to feel what isn't right and if me being used as a dummy helps those in the future (like my daughters) then I will put up with it. So, yeah, anyway, my big belly would always pull my back out of place and it hurt like hell...... I found using various, strategically placed duvets, blankets and pillows could help, well, they took the edge off and allowed me some sleep but that was it.

Oh, and partners, DH is the best, we are good together (we are currently having issues, not really with each other but we are in the middle of a stressful situation, might elaborate on that at a later date when its all done, I need to get back to the old days, seems so long ago but its really less than a year ago), anyway, both DH and I come from messed up homes and we the most important thing for us was providing a safe, happy, fantastic home life for whatever kids we have. We do have issues getting out and about but I think apart from that (and this years events) we have succeeded. So, yeah, my Dh made a difference to my wanting children and bringing them up etc, it is possible to break the cycle, sometimes it takes a lot of hard work, I have had to learn a few things, retrain my brain and I had to learn to love (DH and I had a lot of trouble in our first year of marriage, it was violent and crappy because of our baggage but we recognised it, got counselling and now rarely argue (except for this past year, ok, will tell you about that tomorrow because it has had a major impact on my health).........

I think when you have lived a kinda crazy existence with craziness in it its hard to see a future, let alone think about having kids joining you in it!!!!!!!

[JaneS]

Originally Posted by QueeTheBean

Not meaning to open a can of worms, but . . .

I get very confused with all the vitamin/supplement stuff. I recently just stopped taking everything after reading that there haven't been any reliable studies proving that any of them are effective. That said, I know that there are a million studies out there that show otherwise, but how do I know what to believe?

I am so frustrated.

I think, who is saying there is no reliable studies and who is funding them!?

There is also the simple fact that the type of nutritional intervention makes a huge difference, a small amount of a vitamin or mineral does nothing in some cases... so do a study with a tiny amount to show that it does... nothing! No surprise!

The key for me to learn about nutrients is this: We have been all eating deficiently to build our bodies naturally with the high amounts of minerals and vitamins, in food form (not chemicals) which they are meant to run on.

This is based on the work of Weston Price, a dentist who travelled the globe in the 1930s for 10 years studying traditional populations eating their natural extremely high nutrient content diet from (surprise) lots of animal fats, organ meats, seafood, eggs and dairy. He found very healthy people with no cavities despite not brushing and no dentists, immune to tuberculosis, positive dispositions, completely straight teeth (wide faces and stong jaws and palates to hold them all straight) and more. He compared them to people he was treating as a dentist at the time in Cleveland, and to people from the same tribes and villages as he studied who moved to the city and started eating processed food and became sick, lost teeth, etc. because their diet was deficient.

His studies really spoke to me because it was *before* all this dueling medical study crap! It says to me that this is what a healthy human body is supposed to eat, high in nutrients. It makes sense that a body would break down if it simply doesn't have the right fuel.

Originally Posted by brymommy

Also a big problem is the dose and a large part of what I think JaneS is trying to get across is that we need HIGH doses of many vitamin/mineral therapies before they do any good. I am sure she will be back with her thoughts, maybe we can get her to share what supplements she thinks are the most important and the dosage?

Oy, that's hard! but here are some thoughts of how I approach it...

Magnesium, magnesium, magnesium! and lots of it which is why baths and topical application is so good b/c it tanks you up more easily than supplements which can be difficult to absorb.

Vitamin D according to www.vitaminDcouncil.org guidelines which is in the range of 4,000-10,000 IU per day tracked by blood tests.

B12, Jarrow 5000mcg. sublingual if B12 need is indicated.

For B vits, dessicated liver caps or Brewer's yeast. Or MegaFood balanced whole food B complex.

Zinc, this is a hard one for me as I've never done well with supps as I'm probably copper toxic, I need to address this myself b/c it is very important. Zinc chelate or MegaFood zinc are better absorbed. Or lots of oysters and liver.

Natural, not chemical vitamin C, up to 250mgs per day... my new favorite is acerola powder from Mountain Rose Herbs, 1 tsp divided. I only use chemical C when ill for high doses or toxicity (when I had fillings out). The cofactors in C are very important to keep the C circulating in the body and how naturally humans got their C, not isolated ascorbic acid.

Revise diet: take out allergens, stop the high omega 6 inflammatory oils such as corn, soy, cottonseed, canola, safflower, sunflower, etc. and eat higher omega 3s from fatty fish, pastured meat and dairy, and take high vitamin cod liver oil, Blue Ice or Radiant Life.

I haven't seen fibromyalgia (because I haven't looked) connected to high omega 6/low omega 3 modern diet but I wouldn't be surprised from what I know about omega 6 overload if this isn't a major factor.

Eat according to WAPF principles (see my sig. link) and now the Mark's Daily Apple link is really interesting to me currently for its exposure of insulin's role in the body.

Originally Posted by JENinOR

JaneS, what doses do you recommend of the mag, b12, and folate? Also, I was all set to buy some methyl b12 but then read somewhere that if you have amalgams this form of b12 may be detrimental! Have you heard that before? I have all the symptoms of b12 def. as I'm looking into it. I'm hoping to get my amalgams out asap as I feel this may be the root of my nutritional deficences and need for high levels of nutrients. I have come across ladies whose tenderpoints (any many other symptoms) went away after removing mercury fillings!! Mercury suppresses the immune system anyways, so it can't but help.

I like Jarrow's methyl B12 5000 mcg. sublingual but I don't know about the amalgam issue b/c it didn't apply to me, sorry! I had my fillings out safely before I started on it. Be sure that your dentist follows the IAOMT protocol and use lots of vitamin C, preferably an IV on those days. It wasn't a magic bullet, I had to do lots of other healing but I'm sure it helped.

Andrew Hall Cutler's books are excellent for detailing what mercury toxic people need in terms of specific nutrients, I cannot recall what he says on B12 but I'm sure he would have a good analysis. He is here: http://www.noamalgam.com/ and at the Yahoo group "Autism Mercury" which is not just for autism or children.

Food form of folate is really the best, like from lentils, chicken livers. I've made pate a regular thing in my life. Folic acid the chemical form in most vitamins is not at all utilized by people with the MTHFR defect which could be a factor in many people's healing. See the "Detox Pathway Guinea Pig" thread by WhoMe.

For magnesium, I love epsom salts baths and Ancient Minerals magnesium gel/oil for topical application. Sometimes I take some magnesium chloride liquid by Nutricology, that doesn't irritate my intestines while others do. Many people in the Allergies forum like magnesium glycinate too.

[JaneS]

Magnesium and FM:

I just looked at my favorite book by Dr. Carolyn Dean, The Magnesium Miracle who considers it an important part of treatment b/c it relieves the muscle pain, fatigue, and chemical sensitivity of FM and CFS.

google "carolyn dean fibromyalgia"

[subtlycrunchy]

Good article on fibro from Women to Women: Natural Solutions for Fibromyalgia Focusses on the SHIN protocol.

[tireesix]

Link doesn't work sub.

While I think nutrition is helpful with fibro, I just don't think its the be all and end all.........

I know people who have fibro, their kids have fibro and their mums and grandma had fibro (or dads and grandads and aunts/uncles/cousins). It just seems to me that for some, its a genetic issue. There is EDS in my family anyway and with fibro being quite commonly found in those with EDS (and other illnesses as well ie cancer, arthritis etc) so there are bound to be more fibro sufferers in my family but there are others out there who don't have any other 'known' issues and yet there is at least one person with fibro in each generation or every other generation.

[JaneS]

Yes, allergies and immune system issues also need to be addressed.

You can also have genetic weaknesses, mutations, passed on through generations which require much more nutrition to bypass than the "average" person, such as the MTHFR gene defect which effects methylation:
http://www.dramyyasko.com/nutrigenom...ation-pathway/

[LionessMom]

I wal told that yoga is great for fibro so i got a y membership. yoga classes are free. if you are low income you can apply for a discount. I am only paying $16 a month! woot! cant wait to start.

[Arianwen1174]

I was thinking about taking a yoga class, too. There's a "gentle yoga" class here in town. Too bad it's in a location that's not near a bus stop and is too far to walk to. But it does sound so good.

[paintedfire]

Originally Posted by tireesix

I know people who have fibro, their kids have fibro and their mums and grandma had fibro (or dads and grandads and aunts/uncles/cousins). It just seems to me that for some, its a genetic issue.

My Mom has fibromyalgia, too. Biologically, she's my maternal grandmother, but legally she's my Mom (long story).

She was healthy right up to her fifties. She had breast implants that ruptured - twice - and left her with silicone poisoning. That was almost twenty years ago, maybe longer, but she still has little sores every once and a while where bits of silicone work it's way out of her body via her skin, particularly her forearms. It's beyond freaky.

Originally Posted by LionessMom

I wal told that yoga is great for fibro so i got a y membership. yoga classes are free. if you are low income you can apply for a discount. I am only paying $16 a month! woot! cant wait to start.

I've been taking yoga since I was a teenager and I LOVE it. It helps me with not just my physical problems, but when my mental and emotional issues as well. I find - for me at least - that it makes me become more present in the moment, makes me focus on my body and not the pain created by my body. If that makes any sense at all.

Meditation is a great distraction technique, as well. It took me years to even get a beginners skill at it, though. My brain never turns off, so stopping and just focusing on breathing was really hard for me. I got really frustrated at one point and wanted to quit because it seemed like something so stupid to not be able to master. I'm very glad I didn't throw in the towel, though. It's helped me quite a bit.

[earthmama369]

Got the diagnosis Thursday morning. Fibromyalgia.

[paintedfire]

Originally Posted by earthmama369

Got the diagnosis Thursday morning. Fibromyalgia.

's, mama.

At least you know what you're fighting now. I know right now that might now seem like much comfort but it means a lot as far as how seriously doctors take managing your pain. Hopefully you can find a supportive specialist to help you through.

And if you ever want to talk feel more than free to PM. I just wish I could do more.

[LionessMom]

my mom has it too. mine is worse than hers though. mine showed up earlier in life.

the yoga has been great. but i have to do it or something physical everyday or i start to hurt. i have to stretch every day or it starts tightening back up. but after yoga i feel great and come home and clean and cook. if i sit down for just one day i fall back into the slump. gotta keep moving.

[earthmama369]

paintedfire, thanks for the hugs. Very much appreciated.

I'm coming to terms with this, but it pretty much sucks. I'm using two canes to get around almost all the time now and I always hurt. This flare crept up on me, but once it got going, it's hit hard. Still trying to find a local fibro specialist and figure out meds and such.

I think yoga is going to be a big help though, and I'm setting up a consultation with a local naturopath who advertises as specializing in fibro treatment. We'll see.