Hi, I'm new. Anybody familiar w/ the fibro/vitamin deficiency connection?

[lonniedifranco]

Hi my fiBROS and sisters. Just just found this place so I have no idea what has already been discussed and discovered- but it was absolute fate that I found this website today (well, I think it is). I don't want this to sound like a plug for some website, but I'm gonna link something that I just found like 3 days ago, because the information is good. Edited By Admin The thing is, I was at the website looking for info on vitamin b6, and then i saw some fantasticly encouraging info about fibromyalgia and the connection the symptoms have with vitamin deficiencies. Basically, the symptoms of certain vitamin/mineral deficiencies are IDENTICAL to fibro symptoms, and apparently, at the proper doses of the right vitamins, people have found EXTREME relief from fibromyalgia. I hope this helps somebody. It took me YEARS to wean myself off cymbalta in the slowest way possible to avoid the horrible withdrawal symptoms, like the well-known "brain zaps", which plagued me if I even missed one single dose- not to forget the unbelievable vertigo I got when simply moving my eyes. So I'm DONE messing with pharmaceuticals or "head meds" concerning my issues with fibro. I'm gonna buy the recommended vitamins as soon as I can and hope for the best. I highly suggest everyone read the literature concerning vitamin deficiencies and fibro- it is very promising! Take care

[Ian123]

Hi, Welcome lonniedifranco there is a Search HealthUnlocked top right of the screen for things that have been talked about. Keep posting how the vitamin experiment is working out for you.

[ninjananna]

Hi...and welcome to the mad-house!! I haven't read your link yet but I too have been checking out vit supplements and fibro!

About 3months ago someone posted about the benefits of Magnesium citrate that sounded pretty good to me, so I bought a good brand of this and haven't looked back since!!...♥♥♥

[Keeleybee in reply to ninjananna]

Hi, iv just invested in some magnesium citrate and Epsom salts. How has the magnesium helped you? X

[ninjananna in reply to Keeleybee]

For me it's great keeleybee! I really didn't know how much of a benefit they were until I went to Spain for a week and forgot to take them for 3-4 days....then I found them in my case I take 400mg at bedtime as recommend and they have definitely helped with the night pain and sleep pattern! Still have the odd night where I'm up every couple of hours but much better!...♥♥

[Keeleybee in reply to ninjananna]

Brill! Giving them a try hopefully they will work for me. Give anything a chance! X

[lonniedifranco in reply to ninjananna]

Hello, if you do look at the link, it says a dose of 1000 mg/day or more may be needed for maximum benefit. I have found that the federal vitamin recommendations are always low, like worthlessly low sometimes. I personally recommend looking into the info on higher doses and.see if it speaks to you. I actually haven't had the money to buy all the supplements I want to try, but whenever I take anything, I always follow the advice of more natural type, or "alternative" doctors, since they generally have a more open-minded approach to healing, versus the all too common approach of simply throwing pills at symptoms. I'm glad you are getting a benefit! It is amazing to me how clueless our culture has become regarding the vital roles vitamins play in our health, and how so many disease conditions are reversed with proper nutrition; this shouldn't be such a profound discovery, yet that's exactly what it is lol! Ive had to start from scratch and reexamine everything I thought i knew about health- but I am better off for it. Good luck, take care

[rosewine]

Hi and welcome to the site.

Quite a few people on the forum have been found to be lacking in things like Vitamin B, Vitamin D and magnesium and have found some relief from some of their symptoms when they have been prescribed supplements. Your GP can test you for these deficiencies (I was but fortunately wasn't affected) and prescribe the supplements if you need them.

I personally would not dose yourself up with any mega amounts unless you do know you are deficient as too much of any one vitamin can sometimes do you more harm than good. I do take a good all round multivitamin with priobotics and find that as long as I take them it does seem to help me ward of coughs and colds.

I think you are on a good path of trying to get of drugs that seem to have affected you quite badly and trying alternatives as we are each individuals and what suits one person does not suit another.

Please let us know how you get on with your new regime.x

[dillydally1]

I've just bought magnesium oil, it absorbs into the skin and is mean't to work quicker, tinles a bit when you put it on, but it says if your short of magnesium this happens. take enough tablets so this is better for me x

[Hidden]

I agree with Rosewine - get your doctor to test you to see exactly which deficiencies, if any, you have, as dosing up on things that you are not deficient in can lead to a whole host of other symptoms and problems. My doctor prescribes me what I need, and the prescription versions of supplements are much more effective than any you can buy over the counter, and this way I know I'm getting exactly what I need, and not getting too much of the things I don't lack.

[dillydally1]

you can also get magnesium oil goodnight spray to help with sleep. it has essential oils grape seed, bergamot, chamomile, clary sage x

[fenbadger]

just be aware these "supplements" are described as food, and as such are not regulated as drugs. That alone is an indication what the UK authorities (and others) think of the claims. You'd be right to look into it, but even more to consult the GP. SOME of these supplements may even fight your medication. It's true vit B complex and D may have some bearing on pain, though not necessarily fibro. It's a bit of a grey area, I've heard and read conflicting opinions from respected authorities. Proceed with care.

That said I take a couple supplements and love a lavender pillow at night.

[Jay_Sea]

Hi and welcome - I only joined last month but find I have little time to read and post very much as I find my life is generally work and sleep!! Found this really interesting as I have only just been diagnosed and am seeing my doc on Monday for pain management. I am vit D deficient so am taking a supplement. Only been on it a few days so haven't noticed any improvement yet and I try to go out every lunch time for at least half an hour in the sunshine (or at least daylight!). Trouble is being so exhausted and in pain makes it difficult to go out as I try to conserve energy for my commute home! Going to have a read of the link you sent. Thank you and best wishes.

[Hartleyhare2]

I think it's important to remember that 90% of the UK population is deficient in vitamin D! It is in fact not a vitamin really as the body can produce it itself via sunshine but was labelled as a vitamin in the 50s and stuck, sorry bit nerdy! I think we should all be screened for vitamin and mineral deficiencies, a bit of proactive and preventative health care.

Patrick x

[aura2]

All very interesting and good luck in your venture ... but as others have said been careful ..get your levels check out by your GP first before taking any extra vitimins ...

I took a good brand of magensuim for a long time and until I came off it didnt realise how good it was . Then come the punch line .... In taking it without getting levels che ked out first my calcuim was sky high and vit D extremly low ..result in minor operation to remove my parthyriod that was blocked by a calcuim tumor.

Caused By to much Magensuim ... All good now only I can no longer take Magensuim.

[lonniedifranco]

Well, thank you all so much for the warm welcome and the interest! I appreciate the warnings of caution, as well. I suppose, in truth I am a bit of an oddball, as I have spent countless hours over several years researching many many medical things, and have concluded that the system itself is quite flawed, in that the pharmaceutical companies pose a conflict of interest in funding medical schools, and conducting their own drug studies, to the point of having been caught "red-handed" fixing the data on drug studies when applying for federal approval of drugs. This is quite boring for most people, but the info is out there for those who are interested. These corruptions have put a sort of mistrust in me, or maybe better, a skepticism about pharmaceuticals in general, and medical journals and doctor's opinions as well. Sorry, I know i am a little unusual in my thinking, but I have good reason for it anyway. One thing i will put out there, is the idea that some lab tests are not sesitive enough to detect milder deficiencies that may still be posing a big problem in some people's health. The link above describes this somewhat, but there is more literature oout there on this subject- specifically I have read this about vitamin b tests, and thyroid testing. It is something to look into. Hopefully my odd opinions do not alarm or offend any of you. I sincerely appreciate all the feedback

[BaffledKaffy]

Lonnie, thanks so much for posting this ... I am quite anxious to read it!

I was given 5000 units of Vit D daily for a period of 3 to 4 months because of another issue, tho' it could be related to Fibro as we've come to realize many things ultimately are! I feel there was an increase in my energy level during that time, and I imagine other vitamins could have an impact on the symptoms of FMS as well, IF the short time I spent taking the vitamins was indeed what helped me! As a matter of fact, I had stopped taking it after the period it was prescribed and feel as tho' I noticed a wane in that energy "boost" awhile afterward ~ so I got another 100! I had to postpone my follow-up, so I don't yet know the full impact of taking the Vit D on the original "issue" (per my labs) but don't think continuing it can hurt me for just this short time, till I get in again!? I've read that people take much higher doses than this?!

This is just my personal experience ~ I'm not at all suggesting you follow my lead!

gentle hugs, and a really happy weekend to all! Bk

PLUS ... a P.S.

I take Cymbalta (recently the generic for it, which we now have here in the 'States) ... and was without it for just one & a half days, waiting for my prescription to be filled b/c of a human glitch: I thought my head was going to burst open, and small winged creatures would appear. Not hallucinations, just the "drumming sound" inside of wings beating inside my skull ~ on and off ~ and I was dizzy, w/vertigo, just as you describe. I really have to admire you, Lonnie! I can't even imagine trying to wean OFF this med. I wonder how it is even done ...

I weaned myself, not so slowly, from 230mg / day of MorphineSulphateER to 60mg / day of MorphineSulphateIR. I thought THAT was difficult ...

[lonniedifranco in reply to BaffledKaffy]

Hey, you are awesome!! Let me tell you, I take 20,000 IU vitamin D daily. Our general understanding of health and disease is super off kilter IMO, as per my research. I also take about 4,000 mg vitamin c per day, and MUCH more when I feel a sickness coming on, 8,000 mg initially, and then several more grams throughout the day, and continue for days, slowing down after a while. This is the Linus Pauling protocol. For everyone here- to grasp my absurd sounding ideas, you should watch a most EXCELLENT documentary called "World Without Cancer" by G. Edward Griffin. Take care, God bless

[lonniedifranco in reply to BaffledKaffy]

By the way- you won't believe how I weaned myself off cymbalta- literally, I opened my capsules and removed ONE TINY BALL, and then the next day, removed two tiny little balls, and so on. It was super crazy once I got to 200+ little balls to remove, so I counted the entire contents of several pills to get an average number of balls per pill, and then reversed my counting method, to count only the balls that I would be taking- versus counting how many balls to remove. This was the ONLY feasible way to avoid withdrawal, and 2.5 years later, I finished my last cymbalta dose- consisting of one ball my doctor respected my determination to quit I only quit in the first place, because after nearly a decade, I began to get brain zaps for no reason at all. Before that, it had only occured after missing a dose or being late taking it. Every time i laid down, I got the electric zapping sensation in my brain, so I began to fear what might be happening physiologically inside my brain. I was scared and just HAD to quit. The other benefit of weaning SO slowly, was how easy it would have been to detect a negative mental health response to lowering my dose; thankfully that never happened! I am also currently on a S L O W wean off my pain meds, which is somehow easier Take care!

[BaffledKaffy in reply to lonniedifranco]

Oh, goodness ... Just "seeing" and then keeping track of those minuscule beads sounds an almost insurmountable task! No wonder it took years.

But having the worrisome sounds and dizziness I do, I can understand how you'd be motivated to go through such a lengthy and difficult process. Mine aren't what I'd call "zaps" ... those sound sharp and perhaps "electrical" feeling? That really would be frightening ...

Thanks for the info/insight on how to do it ... I may get there, too, because I am also experiencing the symptoms when taking the drug very regularly ... I had mentioned the noises previously here, asking if any others have noticed them ...

I've taken the drug for quite a few years, and worry about the ongoing effects, especially now. It may be connected to a slightly diminished hearing capability (or vice versa!).

[BaffledKaffy in reply to BaffledKaffy]

p.s. You take care, too! What patience you must have ...

[BaffledKaffy in reply to BaffledKaffy]

I just remembered (F/Fog again AND it's another sleepless night ~ 4am in Dallas, slept from 11p to 1:00a) some weird head pain:

rather short duration, sharp pains on my forehead over my eyes ... but mostly on the right. Pain doc said they were likely from sinus. Get both lying down & standing, just past 6 months or so.

[lonniedifranco in reply to BaffledKaffy]

The sharp pains you describe sound exactly like my migraines, except mine generally happen on the left side. The pain sometimes is inside my ear, and behind and above my eye, and does feel like either sinus issues or dental issues in a way, although the pain itself feels more "sickening" and "feverish", as though I have a fever inside half my head, along with stabbing pain. Interestingly, cymbalta actually cured my migraines for a time. Chronic daily migraine was my diagnosis, and somehow that all stopped unexpectedly about 3 weeks into cymbalta treatment, which was prescribed for completely different reasons. I was migraine-free for over a year, which felt like a miracle! But then they came back. The cymbalta also seemingly began working less effectively, which is how i ended up going from 30mg/day to 90mg/day. What kind of noises do you get? Immediately before i get the electric zapping sensation, audibly hear a sort of "electrical charging" noise, which comes from within the head area. The noise can be fairly loud, and kind of feels like a "wave" somehow. The REALLY odd thing, is I can "predict" the sound before it comes; I dont know if there is a precursor that I can detect but am unaware of consciously, or if I somehow CREATE the sound by briefly thinking about it! Of course, I felt this zapping many times before i realized I could feel it coming on, so it seems impossible to have created it. It is hard to even guess, when these symptoms are so unique in the first place. I would love for someone to conduct a study and take an EEG, or an fMRI, or other brain scan of a patient withdrawaling from these types of medications, to see if anything lights up when the zapping occurs. I am convinced SOMETHING is physically happening when this occurs. Oh my goodness- I just experienced a mild brain zap just this very second; maybe I really DO cause it to happen subconsciously!! SO VERY ODD and INTERESTING!! I NEVER get zaps unless im lying down these days, and I get them Very rarely, so this is very coincidental if it is indeed only a coincidence. Wow. Freaky. Well, take care

[BaffledKaffy in reply to lonniedifranco]

No noises seem connected to the facial pains, but I do have the "wing" noises that I associate with Cymbalta/its generic. Those seemingly come in threes, are quite sporadic, & extremely frustrating.

[TheAuthor]

I would also like to echo the members that have urged a word of caution as it is possible to overdose on supplements and cause more harm than good. I want to genuinely wish you all the best of luck.

All my hopes and dreams for you

Ken

[BaffledKaffy in reply to TheAuthor]

I very much agree, Ken. Actually, I've always heard that Vit. C is the only vitamin our bodies can "throw off" any excess amounts of ~ any other vitamins it cannot and thus stores. Because of this, other vitamins can possibly do harm. I'd consult my physician and do more research before taking any high doses beyond the D she prescribed for my parathyroid "issue."

Thanks for your input, along with the others replying earlier. As I said, I wasn't suggesting anyone take D as I did ~ I was just pleased with my rather positive, tho' short-term, experience. Anything that's even/possibly giving me a little boost of energy with my FM is worth at least my second thought! (If I can REMEMBER that thought, that is, in my Fogs!)

Hope it's a great weekend for all! =}. bk

[lonniedifranco]

Hey everyone : ) I just now realize the link has been removed by admin. It is my understanding that the website I had linked does not sell any products, but has a link to a shop which sells vitamins, but which actually has a different web address; likewise, the "clinic" shop website has a link at the bottom of the page to the information only website, which is the website I had linked. Maybe this is a grey area in regards to this website's policies, although it seems like it might be rather hard to link anything if indeed the rules do not allow for website links which have links within them to other websites which sell things (if that makes any sense lol). Either way, I apologize for the possible infraction, and also for the good info not being accessible. So I will see about linking the info in a different manner. For the record, as far as my understanding of the law goes, any website selling supplements is NOT allowed to make health claims about their products, as per FDA rules on what is and is not a "drug", and/or capable of improving any condition. This is why I am fairly confident that the original link surely sold nothing, as they would not be able to legally explain the benefits of any vitamins. Does this make sense? Well, i will see what happens- hopefully that link will be put back in, because it is fantastic information, and if they *were* selling any supplements, they would have serious legal trouble on their hands. Thanks everybody, and sorry- I promise i came here excited to help people potentially, and certainly didnt mean to "rock the boat" or stir up trouble. Take care, God bless

[lonniedifranco in reply to lonniedifranco]

Sorry i keep writing more and more- but I have to apologize again! After taking more time to look over the original link, I see the author of the site is selling something; she is a practitioner of functional medicine with her own practice, and for patients who cannot be seen in person, she does phone consultations for a cost. So she is selling her time and her services as a healthcare professional. Again, sorry if this broke the rules here- I am a noob! Take care