fibro-my-HELL-gia--UPDATE Post #59--

[BigFootsCousin]

Back in the day, around the 1880's or so when I was in nursing school, fibromyalgia wasn't even in the curriculum or a word on anybody's lips.

Nowadays, it's everywhere, and everyone has heard of it. I went blissfully through about 20 years of nursing practise, unawares of it's existence, except for the 'usual' drug addict who limped tearfully into view, whining like a two year old who couldn't have a cookie. Have you ever heard an adult 'whine'? It's pitiful. Whelp.....

I'm the one now doing the whining. Fibro-my-HELL-gia, is a rather complex disease, and one of my Docs states that it's not even a disease, rather it's an emotional state. Really? REALLY?

A few years back I had a prolonged, acute episode of feeling "under-attack" by as of yet an unknown illness that lasted about 1/2 a year. I had a rapid and large weight loss, night sweats, small fevers, dizziness, extreme daily nausea, vision changes, bodyaches from hell, fist-sized rash on my chest (scalloped appearing), blood pressure in the 70's systolic, syncopal episodes, profound fatigue, partial and transient paralysis that was 'revolving', headaches from hell, and the general pallor of a ghost. I also had a very severe stiff and painful neck for over two weeks.

And so it begins- my life has never been the same from that illness. Some literature suggests that there is a central nervous system disorder as well as an immune component as well. Rheumatologists are the 'speciality' that are supposed to be able to diagnose and treat this disease......funny thing is- they don't really know exactly what it is. Say what?!

Yep. Seems like this disease, has only gotten the attention of the medical community from around the 1990's or so, and there is considerable discussion as to what type of therapy is suggested for the sufferers of this damnable disease.

Behind curtain number 1 you have the idea that it is psychosomatic in nature and just therapy (counseling) will help to treat/cure this 'anomoly'.

Behind curtain number 2 is a more humanistic approach that uses all of the assets available to a Provider such as: narcotic pain killers, muscle relaxers, anti-depressants, lifestyle changes, & physical therapy to name a few.

Behind curtain number 3 is a whole new set of medications that are fibro-specific in their approach, at least in clinical trials they are. I won't go into all of the new and different meds here, but, after getting on them.....yer 'supposed' to feel better. Supposed to.....key words.

I've been to 3 different rheumatologists, 4 different neurologists, a few ED (ER) visits, and I changed Docs three different times. Apparently, this is relatively typical behavior for fibromyalgia patients as they seek answers to their confounding illness. And believe me....it is really confounding. And, utterly devastating.

My new mantra from my doc is "Man-up". Take it, bear it, stand up straight, hold your head high, & most important of all- don't complain....too much at least.

Damn I hate this disease. Funny thing is, until I got it, I like many, many other nurses out there did NOT believe that it was real, I thought that the patient was full-of-sh*t and just seeking narcotics. Boy, was I ever so wrong.

G-d, you have humbled me before man. I have sinned by not believing others when they told me that they were suffering.....you have opened my eyes and my heart to those around me and I now see your world in a much different way.

I am but sinful dust.

BFC

ETA: Sorry for my above 'rant' but does anybody have ANY ideas/answers to this disease? I'm 'almost' inclined to say that it might have been from a flu shot.....but I won't say that......yet.

 

[packyderms_wife]

Yeppers a lot of folks I know develope fibro after getting lyme's disease, and you just described it perfectly! I had lyme's but unfortunately even though it showed up in my bloodwork at the time ALL THREE docs I saw told me that I could NOT have lyme's because it didn't exist in Iowa. NOTE I had recently travelled to eight other states, to teach, where it is prevelant. Needless to say my symptoms were almost identical to yours with the exception of the paralysis or the the syncopal episodes. I have a friend who managed to get lyme's and west nile at the same time and she DID have the paralysis and the syncopal episodes, in fact she still hasn't truly recovered from this and it's been close to 8 years now. I have another friend who had only Lyme's and she did have the syncopal episodes.

I've heard that it has to do with a very small portion of the brain no longer functioning properly, can't remember it's name off the top of my head but it's connected to the petuitary system somehow.

K-

 

[Hfcomms]

Dr. Jimmy Steger can help you. Here is a video presentation of him at a bible conference. He doesn't specifically deal with your disease in this segment (lasts around an hour) but gets into the nutritional aspects and talks about all the toxins in the environment. He also has a book called 'the nutrition factor' which is a real eye opener. The guy that does the introduction to Jimmy was diagnosed with stage 4 prostate and bone cancer and given a few months to live and that was three years ago and is still plugging along. Take a look at the video and listen to the guy and you'll get an education and a few ideas for yourself.

http://bible-truths.com/video/DrSteger.wmv


http://www.drsteger.net/

 

[FireDance]

BFC my daughter has FM. I have nooo idea about it except that it's painful and no one knows jack about it. Seems to be in the theory stage only. I do know that going to the tanning bed helps her (she went to the beach once and one day on the beach & she was sx free so we started tanning bed when she came home) and D3 helps. Wheat products seem to exacerbate hers, but she hasn't really been able to stay away from wheat completely. If she would listen to me (another story) I would say take Nature's Calm and see what happens. I have a friend that is from the "man up" school and frankly, that attitude pisses me off. I would steer clear of that person if I were you b/c of stress. Going to check the Steger link and see what he says. Hopefully we can drum up some ideas here.

 

[AddisonRose]

My sister got FM 8 years ago right after taking a Tamiflu shot because she was coming down with the flu. Within days she was partially paralyzed and in the hospital for 2 months. Still no relief for her and she lives in constant excruciating body pain, migraines, and sleeping 20 hours a day. A living H3ll.

 

[Sassafras]

I was diagnosed with fibro about ten years ago. At the time I felt it was the house we lived in since it was so close to the ground. It had a lot of mold under the house. We also heated with wood at the time so heat was uneven in the house. My first move was to buy an electric blanket. By using that I found I moved around more at night instead of staying huddled in one place. That helps a lot with morning pain. I guess that would be the same premise as the tanning bed, which I cannot use due to vitiligo and skin cancer that runs in my family. I guess I could if I want to walk around looking like a freak.

After we moved from that house I decided I didn't want to become an old lady before my time so I put the entire thought out of my mind. I refused to admit the diagnosis, telling myself the doctor must have been wrong. I managed for a while still feeling the pain, but refusing to recognize it, until we moved back home where the temps are a bit lower than where we lived previously. It hit like a ton of bricks.

For myself, I've learned that heat is the key. When autumn comes around the pain meter within my body is set at high. It's my favorite time of the year, but my worse time. The rest of the year the pain is not as intense for me, but ever present. I've taken to drinking a lot of hot tea, mostly mint because of the mild pain relieving qualities. I've canned a lot of soups this year since they work wonders heating from the inside out. I still refuse to be medicated for fibro, but I do take an Advil gel cap at night before bed and one in the morning to get me going. I don't know how much longer I'll manage without prescription meds, but I'm sure one day I'll resort to that.

And no, I refuse to be a snowbird or make a permanent move to a sunshine state. It's my lot in life to deal with as I can. It definately isn't fun.

 

[workerbee]

Yep, it sucks.

When we lived im Ohio I saw Dr Mark J Pelligrino, a specialist who has FM himself and does research and written books on the subject. Great guy, but no real answers [at least 10> years ago when he was my doc]

I hope/pray they find THE ANSWER (not a theory) in my lifetime.

I feel your pain and understand.
I REALLY DO!

 

[ceeblue]

I googled this: fibromyalgia herbal

Some sites popped up.

I've seen discussion of herbal treatment for fibromyalgia, but I can't remember where. Sorry. There's a page for it on Facebook with a large discussion group. An old classmate has it and posts some links.

 

[iboya]

Back in the day, around the 1880's or so when I was in nursing school, fibromyalgia wasn't even in the curriculum or a word on anybody's lips.

Nowadays, it's everywhere, and everyone has heard of it. I went blissfully through about 20 years of nursing practise, unawares of it's existence, except for the 'usual' drug addict who limped tearfully into view, whining like a two year old who couldn't have a cookie. Have you ever heard an adult 'whine'? It's pitiful. Whelp.....

I'm the one now doing the whining. Fibro-my-HELL-gia, is a rather complex disease, and one of my Docs states that it's not even a disease, rather it's an emotional state. Really? REALLY?

A few years back I had a prolonged, acute episode of feeling "under-attack" by as of yet an unknown illness that lasted about 1/2 a year. I had a rapid and large weight loss, night sweats, small fevers, dizziness, extreme daily nausea, vision changes, bodyaches from hell, fist-sized rash on my chest (scalloped appearing), blood pressure in the 70's systolic, syncopal episodes, profound fatigue, partial and transient paralysis that was 'revolving', headaches from hell, and the general pallor of a ghost. I also had a very severe stiff and painful neck for over two weeks.

And so it begins- my life has never been the same from that illness. Some literature suggests that there is a central nervous system disorder as well as an immune component as well. Rheumatologists are the 'speciality' that are supposed to be able to diagnose and treat this disease......funny thing is- they don't really know exactly what it is. Say what?!

Yep. Seems like this disease, has only gotten the attention of the medical community from around the 1990's or so, and there is considerable discussion as to what type of therapy is suggested for the sufferers of this damnable disease.

Behind curtain number 1 you have the idea that it is psychosomatic in nature and just therapy (counseling) will help to treat/cure this 'anomoly'.

Behind curtain number 2 is a more humanistic approach that uses all of the assets available to a Provider such as: narcotic pain killers, muscle relaxers, anti-depressants, lifestyle changes, & physical therapy to name a few.

Behind curtain number 3 is a whole new set of medications that are fibro-specific in their approach, at least in clinical trials they are. I won't go into all of the new and different meds here, but, after getting on them.....yer 'supposed' to feel better. Supposed to.....key words.

I've been to 3 different rheumatologists, 4 different neurologists, a few ED (ER) visits, and I changed Docs three different times. Apparently, this is relatively typical behavior for fibromyalgia patients as they seek answers to their confounding illness. And believe me....it is really confounding. And, utterly devastating.

My new mantra from my doc is "Man-up". Take it, bear it, stand up straight, hold your head high, & most important of all- don't complain....too much at least.

Damn I hate this disease. Funny thing is, until I got it, I like many, many other nurses out there did NOT believe that it was real, I thought that the patient was full-of-sh*t and just seeking narcotics. Boy, was I ever so wrong.

G-d, you have humbled me before man. I have sinned by not believing others when they told me that they were suffering.....you have opened my eyes and my heart to those around me and I now see your world in a much different way.

I am but sinful dust.

BFC

ETA: Sorry for my above 'rant' but does anybody have ANY ideas/answers to this disease? I'm 'almost' inclined to say that it might have been from a flu shot.....but I won't say that......yet.

(((BFC)))
...been my experience too, I know where your comimg from...
I'm waiting to see if this mandatory (condition of employment) flu shot I got at 6:30 this morning is going to cause a flare

 

[gawarriorqueen]

I have systemic sclerosis which shares a lot of "pain points" with fibromyalgia. The only drug that gave me any relief is cymbalta. Don't know why or how, but it worked.

 

[sherbar92]

BFC, you have a private message

 

[BigFootsCousin]

BFC, you have a private message

Sherbar92!!

That wasn't a "private message", that was AWESOME!

My vitamin D level IS low. I've been taking supplements and my '5,000' bottle ran out and I've been taking 1,000's for the past week or so. I'm going to go buy some more today and see if there is any appreciable difference.

Folks, thank you for your replies! My computer (10 month old Gateway laptop) has a dying hard-drive. I called Gateway yesterday and that was their 'diagnosis' and I'm shipping this puter off to Texas monday morning........so I'll be offline for 'about' 2 weeks until the hard-drive gets replaced and this unit gets back to me here in Orygun.

When I get back online, this thread will be the FIRST one that I'll be pulling up......if I can remember my passwords for all of the forums that I visit.....and that's a lot of'em too.

Here's the weird part with my 'fibro', some of my blood tests (CRP,ANCA) are elevated, where others such as my sed rate are not. I seem to have a mixture of possible diseases going on, and the 'differential' includes polychondritis as well- which I'm taking a trial period of methotrexate for right now. There goes my immune system, what's left of it anyways.....

As for me taking the flu jab this year....I'm refusing. Absolutely refusing, and it's a HUGE stink in my department where I work. I had to sign three different documents and 'watch' a video that was specific to our hospital. I also have to wear a mask starting on November 1st until the flu season is 'gone'. Which could last for months and months......and I have to wear it from 0800-2030hrs. Each and everyday. Sux when I've got asthma and RAD, ......and, people cannot tell when I'm greeting them if I'm smiling or not. Darn it.

Thanks for listening (reading) my venting here. I'm not a sissy man, not even close. My brothers call me a "Pirate", and my colleagues call me a "Wookie". So, whatever this disease is, it's HUGE, because it's sure kicking my butt.

BFC ><>

 

[packyderms_wife]

BFC another thing to ponder is sleep apnea. My aunt has fibro and really bad, it started getting worse as did her weight gain. Doc did a sleep apnea test and sure enough she had apnea. After being on the cpap machine for two years now her pain levels have dropped off. She also has asthma and that improved as well.

Since you've had a slug of blood tests done what are your O2 levels?

What is RAD?

 

[duchess47]

BFC, Karma is a bitch. Sorry, had to say that for all the times I've had people look at me like I was crazy or lying. Not my doctor, fortunately, who sent me to a university rheumatologist to have it confirmed once he had ruled out everything else. He went to a conference on it and learned about Vivactil (this was years ago) and had me try that. I have since called it my miracle drug. There is a new drug out now called lyrica but my current doctor isn't happy with the side effects he's heard about so I haven't tried it - I trust him totally. Vivactil does not get rid of the pain but most days it stays at a low level and it does combat the fatique. Gardening does wonders for my fibro and I spend a lot of time there spring, summer and fall - in the winter I hang out in the greenhouse a lot. I do take D3, eat a lot of fresh fruit and vegetables and on really bad days curl up in bed with an electric blanket. This year my doctor put me on Nerontin (sic) for bad leg pain and that has helped enough that I can sleep. No one knows why it works for fibro apparently, it's an old drug for seizures but it does help.

 

[BigFootsCousin]

Aha! I'm writing /reading thread using a PS3 game controller . Crazy. R.A.D. is reactive airway disease. And yes, karma is a b#tch. Look, I came clean here and confessed my sins to the entire world/internet- don't condemn me until you've walked in my shoes. BFC

 

[duchess47]

Glad you're back online. Try Vivactil, Nurontin, and please eat as much fresh fruit and vegetables as possible. Try to cut out as possibe preservatives, additives, dyes, etc. I sure do wish you the best with this disease from hell.

 

[packyderms_wife]

Aha! I'm writing /reading thread using a PS3 game controller . Crazy. R.A.D. is reactive airway disease. And yes, karma is a b#tch. Look, I came clean here and confessed my sins to the entire world/internet- don't condemn me until you've walked in my shoes. BFC

was NOT condeming you in any way shape or form, just trying to get more info. I have one aunt with debilitating fibro and two other aunts with RA this is on my dad's side of the family. My mom was diagnosed with RA right before she passed away at the tender age of 57 in 2005.

Will google RAD now that you've said what it is.

Oh and praying for yah

K-

 

[OldArcher]

BFC, Ma'am,

I've had it for 15 years, and it's no picnic. I just ignore it as much as I can, but sometimes, it is not easy... Add to that spinal stenosis and psoriatic arthritis, and there are times one ponders the cost of continuing to march on... Maybe all that's why I've become such a cranky curmudgeon. I don't suffer fools gladly, or at all. So, whenever things get too bad, I remove myself from the "scene," rather than get into a bad situation... I wish you, and everyone else here that has these debilitating diseases, all the very best that life has to offer. I'm old, so the odds of finding surcease or relief is not all that great. My Fibromyalgia was piggy backed onto Epstein Barr. When I was tested for Epstein Barr, my levels were that highest the docs had ever seen. The symptoms of Fibromyalgia had begun just before my testing on EB... Chronic Fatigue is one of the symptoms of EB, and you really don't feel like doing anything short of dying...

Hang in there... Things can ALWAYS get better, and they likewise can go critical with out warning... Always maintain situational awareness, so that you're never surprised...

With exercise, a good/proper diet, and adequate rest, things will get better...

May you and yours always be well, safe, happy, and forever, free...

OldArcher, out...

 

[KerryAnn]

As long as I stay off of my food allergens, eat no sugar and take care of myself (enough sleep, eating regularly, no caffeine, etc...), I don't have any symptoms. Refined sugar will put me into a BAD flare by itself. I'm thoroughly convinced my arms are going to fall off, they scream so bad, after only a small amount of white sugar. If I go too far, my whole body is wracked by it. Otherwise, it normally takes two different things to cause me to flare- like lack of sleep combined with a food allergen exposure.

I know not everyone gets relief this way, but since it has significantly helped or stopped fibro for me and some people I know, it bears throwing out there, in case it helps you. I recommend you get tested for food allergies and celiac disease. York labs online is the best option, you don't have to have a doc order it for you.

 

[Be Well]

I thought of joining the thread a few days ago and now I've succcumbed to temptation... IMO (fwiw) all these odd ailments are due to two things:

1. The unnatural way we live that causes a great deal of anxiety and tension - it's "Modern life". Everyone knows what I mean, probably. This also includes the vast amounts of subtle energies that permeate the airways as well as fractured family life, other peoples' psychopathology you have to deal with, their stress, anger, anxiety, etc. Also the vile MSM, "entertainment", etc.

2. The vast amounts of toxic chemicals in the food, air, water, workplace, home, farm, you name it.

So all these auto-immune and mysterious ailments are experienced. Here's my little story:

After getting heavily poisoned by a neighbor spraying his yard up to our house (all windows open, he probably sprayed into them as well) in the middle of the night, with a 3 to 5 X the legal concentration of Diazanon (then he went to a motel for a few days), I got very ill, had a terribly painful miscarriage at a bit more than 3 months along, and then gradually thyroid went bad, gained 50# for NO reason (active and athletic my whole life), lost ALL energy, got asthma, and then developed Rheumatoid arthritis! Hurt all over, checked the FM symptoms, yup, got 'em all. Tired? ha aha ha Oh, then severe chemical sensitivity set in.

That was 17 years ago or so. I've learned a lot - studied Ayurveda, experimented on myself and anyone who'd hold still, then started having people ask for help and invested in a lot of herbs, books, essential oils and etc. Still experimenting, learning and making forumlas.

Finally got the RA cured a couple of years ago (couldn't walk more than 100 yds and even then with pain, couldn't play guitar or use my mediation beads, hardly could cook or dress myself - took a long time with pain, couldn't bend knees, etc). Now - thankfully - no more RA pain at all. Asthma is under control by avoidance of triggers (ALL perfumes and petro-chemicals), some diet restrictions (gooey cold stuff like ice cream sour cream etc), herbs and essential oils.

Working on the thyroid with herbs, much better but still dealing with extra #s, not as much extra but still extra. Heart symptoms from thyroid all gone, energy much better. Temperature normalized.

Chemical sensitivity at a high point due to circumstances beyond my control.

Now, here is are some general ideas that IMO will help most people with these mysterious but VERY REAL and often debilitating ailments that I classify as auto-immune.

1. Fresh good air and doing some kind of breathing exercises.

2. Good water - I use a Berkefeld but we have good well water now anyway.

3. CLEAN food - avoid any chemicals like the toxins that they are - artificial colors, flavors (including the omnipresent so-called "natural flavors" or "natural flavoring" - just versions of MSG in disguise), MSG of course, preservatives of any kind, hydrogenated or partially hydrogenated oils (I call 'em "industrial oils"), and corn syrup of any kind. For starters... IOW avoid all junk/fast food. Eat food as simple/natural as possible.

4. Avoid microwaves or even being around them when they're on. Avoid being close to TVs and try to not watch very much (the electro/stuff as well as content!).

5. Get enough sleep.

6. Get good massage regularly. Find someone who's good, many are not. I used to be a massage therapist and found that many professional massage therapists are not very good. Even trade with a friend - some of the best massages I've had were from non-professionals. If you live near a school (RCC has a massage school section, BFC - they may do massages!) they often have cheap or even free massages so they're students can practice. If nothing else, learn some simple self massage (I know some traditional techniques if anyone's interested) that take not much time and are better than nothing and do increase mobility and energy and decrease pain. Even if all you can do is massage your own feet, it makes a big difference.

7. Hot bath soaks as needed esp. with some suitable essential oils relieve pain, muscle tightness, tension, etc.

8. Sometimes a good acupuncturist can be very helpful. I've had some good effects but good acupuncturists are not always around (not way out in the boondocks where I now live).

9. Think of adding some kind of meditative prayer or contemplation daily. Whatever suits, there are many kinds, I have taught breathing, breathing with mantras, mantras (prayers) with beads, music etc. This can be extremely helpful on many levels. The rosary done with concentration as well.

10. Exercise as Old Archer mentioned - walking (not on a busy street breathing all the fumes!), but in a peaceful clean place, and non-stressful ones like Tai Chi, Chi Gung and Yoga are traditionally good for these conditions, but whatever one can do.
If I think of more things I'll post them.

 

[Wise Owl]

Great thread!

I have some mystery ailment right now. Thyroid is messed up and we are working on that.
Low blood pressure, some sort of low grade infection going on that we are trying to find out what.
Energy level is about a 3 on the 1 to 10 scale.
Irritable most of the time.
Tired all of the time.
Arthritis hurts constantly in my knees, neck (which is stiff) and shoulders.
Dizziness at different times.

Fluctuating blood pressure which started a couple months ago.
Last week at ortho it was 140 over 96.
Yesterday it was 96 over 66.......!

Night sweats, can't tolerate extremes in temps. I get overheated fast and can get cold just as fast.
I can still walk some days but not everyday like I used to and I mean my daily around the block 1 mile with the dogs. I was power walking up till last fall about this time.

I get leg cramps about 4 nights a week.

Vision is messed up, some days really good with new glasses and some days not so good.

It started with me last year sometime. The energy thing and just not feeling good. I went to the doc and she ran some tests and decided it was low thyroid and put me on Armour thyroid. Upped the dose a couple months ago and that hasn't helped.

I just had 4 vials of blood drawn yesterday. She is running all sorts of tests. Thyroid came back ok but I am not convinced that is right.

Do these symptoms correspond with FM? I sure hope not.

Oh and we are testing for Lyme disease also altho we tested for that a while back, bout a year ago.

I know I feel like crap most of the time. I sure hope I can at least find out what is going on with me so I can work on it but at this point I am stumped.
I eat pretty good, all from scratch cooking. I don't eat a lot of bread anymore but mostly from just not being hungry much anymore.
Oh, I lost 15 lbs in about 2 months.

Weird symptoms, I know.

 

[Be Well]

Wise Owl, sorry to hear of your health problems. Do you have ringing in the ears? Are your ears sensitive to sound, I mean more than before? Is your skin extra dry lately? Any changes in hair? Heart palpitations or tachycardia? Does exercise just tire you out instead of energize like it used to?

How about lungs and breathing?

 

[Wise Owl]

No heart stuff but I have been losing my hair for a few years now. Left ear rings constantly but so far I can ignore it pretty much.
Skin has been dry for years now.

I used to love walking. I have walked miles each week for as long as I remember.

This stuff all started piling up about a year ago that is why I went to the doc for blood work to see what was wrong. The thyroid meds did not help much.

Getting a chest x-ray next Tuesday but not because I am short of breath or coughing. I think doc is just covering all the bases on me. I intend to ask about Fibromyalgia tho. She is even testing for Lupus.......!

 

[Be Well]

I was asking because most of those things are quite common with low thyroid. Among others - can't remember them all, I looked a lot of stuff up when I found my thyroid was not working well. It's so hard when you feel like crap - and didn't used to - and no one can figure out why!

 

[Wise Owl]

According to bloodwork, my thyroid levels were good this time so we are still at a loss.

I managed to get a bit of the outside work done but was so tired I went to bed really early last night. I mean, 2 hours of light work wiped me out.
I am exhausted this morning after getting 8 hours of sleep! And I hurt like crazy and I am not even doing anything, just sitting here altho I already took the dogs out to potty and built the fire in the woodstove. NONE of that should be tiring nor the small amount of work yesterday.
It seems a couple hours outside and I am wiped out. NOT normal at all.

I hope they figure this out. I need to get strong again. Dh has major lower back problems and he is useless after just a few mins of doing most anything. Then he is inside with heat on his back again.

 

[mala]

Yesterday at work I overheard two of the girls talking about how one of them was feeling dizzy all the time, had ringing in her ears, headaches. The other insisted it was the lisinopril she was taking. I looked it up on the net, and sure enough those were all side effects of that drug. Now here's the funny thing, they were both nurses, and the doc who prescribed the lisinopril insisted that her symptoms weren't from the drug.

Lesson: Really look at the meds you are taking and possible side effects.

Also, I think it is possible that a lot of our body maladies come from not cleaning out the intestines well. Someone on this site a long time ago pointed me toward Dr. Christopher, a natural healer who died several decades ago. I have found a lot of good information from him, and one of his students, Richard Schulze, who is still alive and has a website. I had chronic IBS for over 25 years, and after going on his cleanse 1 and cleanse 2, my body is working beautifully and I have come to understand how not having a healthy digestive track can derail other aspects of your health. I'm not saying that FM is caused by this at all, I'm just saying that the cause isn't always obvious, and we could all do with a good cleaning!

Jen

 

[Be Well]

Wise Owl, I was thinking about this thread today and here's another possible connection - maybe, maybe not. DId you get swine flu? I got it at least once and maybe twice. I won't go into the details but it was very, very horrible and completely different from any flu I ever had before - Central nervous systme involvement, feeling totally drugged out and brainless, lungs filled almost and could hardly breathe, kidney pain and UTI symptoms, no energy whatsoever for a long time, complete exhaustion, and other stuff including severe pains here and there. And NO fever...

Now I seem to have strange set backs every few months or so, just strange things. I think a lot of people who had swine flu have had residual long term effects, some that don't even show up all the time.

 

[Wise Owl]

No flu here. Praise God....(had to add that)

None in 11 years now. Thank God again.

No flu shots either. The flu stopped when the shots stopped for me at least. Plus we pretty much stay home when it's going around. Easy when you aren't working anymore and don't really need to go out except for a quick trip to the PO or grocery store once a week or so.

 

[Be Well]

Well, that eliminates residual flu problems at least! I never get flu shots, I have reactions to almost all drugs. I really tried to stay away from everyone - but one day a man came to our property to saw up a bunch of logs into lumber and DH helped him all day outside and the man was coughing all day!

That was it... all it takes is one person.

 

[BigFootsCousin]

Sherbar92!!

That wasn't a "private message", that was AWESOME!

My vitamin D level IS low. I've been taking supplements and my '5,000' bottle ran out and I've been taking 1,000's for the past week or so. I'm going to go buy some more today and see if there is any appreciable difference.

Folks, thank you for your replies! My computer (10 month old Gateway laptop) has a dying hard-drive. I called Gateway yesterday and that was their 'diagnosis' and I'm shipping this puter off to Texas monday morning........so I'll be offline for 'about' 2 weeks until the hard-drive gets replaced and this unit gets back to me here in Orygun.
When I get back online, this thread will be the FIRST one that I'll be pulling up......if I can remember my passwords for all of the forums that I visit.....and that's a lot of'em too.

Here's the weird part with my 'fibro', some of my blood tests (CRP,ANCA) are elevated, where others such as my sed rate are not. I seem to have a mixture of possible diseases going on, and the 'differential' includes polychondritis as well- which I'm taking a trial period of methotrexate for right now. There goes my immune system, what's left of it anyways.....

As for me taking the flu jab this year....I'm refusing. Absolutely refusing, and it's a HUGE stink in my department where I work. I had to sign three different documents and 'watch' a video that was specific to our hospital. I also have to wear a mask starting on November 1st until the flu season is 'gone'. Which could last for months and months......and I have to wear it from 0800-2030hrs. Each and everyday. Sux when I've got asthma and RAD, ......and, people cannot tell when I'm greeting them if I'm smiling or not. Darn it.

Thanks for listening (reading) my venting here. I'm not a sissy man, not even close. My brothers call me a "Pirate", and my colleagues call me a "Wookie". So, whatever this disease is, it's HUGE, because it's sure kicking my butt.

BFC ><>

I got my computer back from Texas today and this IS the first thread that I've pulled up. Now, I've got some reading and more researching to do!

Thank you everyone for your replies. I 'tried' reading this thread using my tv and the PS3 game system that I've got and it was just too difficult, so now that I've got my puter back, life is 'gooder'!

BFC

 

[duchess47]

Glad you are back online. Best of luck to you.

 

[Be Well]

BFC - one of the things I've found the hardest in dealing with various "mysterious" ailments is that many people think I'm just a weird hypochondriac. Had to get a thick skin. Few others know what anyone else is going through. But those of us dealing with those "mysterious" but often debilitating and painful chronic stuff know, oh we know... Hope you find relief soon. Good massage would be very excellent. I just learned about a new chiropractor who has a MT in the office yesterday, he's the son of my dentist. We plan to go and check him out as soon (or IF) we get a bit of spare $. PM me if you want more info. They're in GP.

 

[davidinthewilderness]

New latent virus's are out that once they do their initial dirty work they retreat into fat, central nervous system, etc... Then one gets reoccurring or chronic conditions. I discovered them when I suddenly gained allot of weight after a nasty virus. The weight did not make sense because my diet had not changed, exercised, same ol, same ol. Then I discovered this latent virus and took a supplement for it and voila, fat gone and return to normalcy.

 

[BigFootsCousin]

New latent virus's are out that once they do their initial dirty work they retreat into fat, central nervous system, etc... Then one gets reoccurring or chronic conditions. I discovered them when I suddenly gained allot of weight after a nasty virus. The weight did not make sense because my diet had not changed, exercised, same ol, same ol. Then I discovered this latent virus and took a supplement for it and voila, fat gone and return to normalcy.

Ho-kay.

What virus? What "supplement"?

And......howindahell did YOU discover this "latent virus" of yours? Answers man, answers!

BFC

 

[packyderms_wife]

Ho-kay.

What virus? What "supplement"?

And......howindahell did YOU discover this "latent virus" of yours? Answers man, answers!

BFC

No kidding! Inquiring minds would love to know. I suffered through an extended bought of noro virus in 2007 and have gained a hundred pounds since then. No change in diet or exercise, just the virus.

 

[BigFootsCousin]

Here is an AmazonDOTcom web page that shows the book that I just finished reading about fibromyalgia by Dr. David Dryland.

http://www.amazon.com/Fibromyalgia-...UJVY/ref=sr_1_1?ie=UTF8&qid=1320105623&sr=8-1

I'm seeing him at 0930 tomorrow morning for about my 4-5th appointment with him. This book of his answers many questions that I had about this disease but it also raises many, many more.

Dr. Dryland also seems to have a fibromyalgia 'forum' that I also signed up for. As I know that some of you here also have this damnable disease, I'll forward his web address here as well.

www.drdryland.com

I hope, that as I personally go on this fibroHELL journey of mine, that maybe some of you can get some answers for yourselves as well. His book/web site are worth a look.

BFC

 

[duchess47]

Thank you for your offer and for the link. I'm betting there is a lot of new information since I was diagnosed and I would love to hear about it.

 

[bev]

BFC and others, I'm so sorry y'all are dealing with fibro! I was diagnosed in 1988 I think. Was in a bad car accident in '87 and the pain never went away. I'm sure that was the start of it for me, but other people have different triggers - other accidents, viruses, stress, surgery, and on and on.

My major symptom is severe pain, but I have others to a lesser degree - extreme fatigue, stiffness, sensitivity to cold (love my heated mattress pad!), and of course the fibrofog.

I saw several docs before being diagnosed; they ruled out everything else. None of them told me to "learn to live with it." If your doc tells you that or even acts like he doesn't believe you, FIRE HIM!!! If your doc doesn't provide adequate pain control, FIRE HIM!

I've tried almost every "fibro" drug out there - none of them worked and they all gave me unpleasant side effects. The only prescription drug (other than my pain meds) that gives some measure of relief is Elavil (amitriptylline). It also helped me put on about 50 pounds. I'd love to get off it and have tried weaning off several times, but after a few days, I have to start it back up. My doc prescribes the 25 mg dose with directions to take 3 at night, but he understands that I take less whenever possible. He also prescribes "adequate" pain meds. I am now using a low dose of the duragesic patch, and I am able to function fairly well most days. I do still have bad days and flares (MAJOR flares following surgery), and I just try to sleep those away.

Elavil is an anti-depressant, but the dose is very low to treat the fibro. The thinking is that it can help with deep sleep, when the muscles repair, leading to less pain.

I have also tried most of the "alternative" treatments. Diet, supplements, massage, accupuncture, hypnosis, breathing, tanning beds, neurontin, cymbalta, PT, you name it. Massage is very helpful, and I go whenever I can afford it. Heat helps too, and I am always worse while the weather is cold.

I reached the point a long time ago when I decided, this is what works for me, and I'm not going to keep running after every new thing that comes out, or trying everything my well-meaning friends and family suggest. That was driving me insane, and as you know, stress makes it all worse!

I do still read new research and check into the good fibro boards now and then, but I've got a good doc and I know what works, so I'm resigned to this now. I'm done fighting it. But if a cure comes out in my lifetime, I'll be the first in line!

I wish you luck and I'll be praying for you. Do your own research, see the docs you need to see, and you'll settle on a regimen that works for you.

Oh - I love your word - fibromyHELLgia!

Also...have you heard this one? The good new about fibro is that it won't kill you. The bad news about fibro is that it won't kill you.

 

[NC Susan]

....Lesson: Really look at the meds you are taking and possible side effects. ...Jen

www.rxlist.com

 

[No3buckshot]

BFC,

Sorry to hear you have it, but glad you know the system and can work through it.

Lady was in the hospital with my Mom, while Mom was getting worked up for replacement of BOTH hip joints. This was back in '79, hip joints were new, at least here in "fly-over" country and they were still doing the replacement surgery in a positive overpressure room with the Dr's wearing "space suits".

The lady in the hospital had pretty much the classic FM symptoms, but they were not recognized back then. They could not find some easy cause for the pain, like Mom's degenerated hip joints, so they kept telling her it was in her mind and putting her on the psych ward.

She gave up and let the Drs win and committed suicide. Couldn't take being told the pain was all in her head any longer.

Good luck and keep the rest of us informed, please.

Buckshot