Fibromyalgia ???

reply to post by Vamp333


My mother had Fibromyalgia, just like the second poster in this thread, whenever I accidentally touched her in the wrong place, she would cry out in severe pain. For starters, I can't help you 100%, but all I know is that she was on some kind of meds - I couldn't tell you what kind - but it never fully went away. Although, like others have suggested, a hot tub really helped at some points, according to my mom.

Sorry I can't be much of help, though. I can't remember all the treatments we helped my mom go through. My mother was a medical disaster, with over 60 different diseases that I can't even remember, but some include Candia, Scleroderma (petrification), Leukemia, and of course Fibromyalgia.

She passed away over a month ago, on October 3rd. I still thank God to this day of the miracles he did in saving her life 7 years ago, and for weakening the Leukemia 2 years ago, and for giving her 7 months extra when she was re-diagnosed and given 2 weeks to live.

reply to post by Vamp333


Switch to a plant diet for awhile. No milk, meat white flour, sugar (inc corn syrup and all other fake sweetners) and no chemical additives. In about 2 weeks you should see your symptoms go away completely. Then you can decide for yourself what is happening and not happening to you. Good luck.

Fruit and yogurt breakfast.
Salad lunch
and if you must have fish or chicken without fat and sauces for dinner you can.

Drink caffeine free tea and water.

reply to post by Rhino5


The antidepressant's given to fibromyalgia sufferer's are given at 1/4 to 1/2 dose to relax the body so they can get some sleep. OK Dr RHINO5.

I've had Fibro for many, many years, being first diagnosed in 1989 before it was a medically accepted diagnosis. I'm female, but both my father and my son have also been diagnosed with it. As another poster said, it's more rare in men but it does happen. My father's mother passed away before doctors began recognizing it but, based on her symptoms, i'm certain she had it, too. We also all have other autoimmune issues, migraines, varying degrees of anxiety, TMJ and arthritis. I wonder, of course, about a genetic link.

Based on my experience, LittleBirdSaid has given you some good insight and suggestions.

If Rhino5 would like to take the Fibro off my hands and try it on for him/herself for a while, i will gratefully offer it to him/her; s/he can then report back in a couple of months and tell us how easy life has become and how that whole hypochondria thing is working out for him/her.

Regarding the use of gabapentin (Neurontin) for Fibro: it's a popular treatment but having had it tried on me, i do not recommend it. I had excessive weight gain with it as well as mood changes, as did the 3 other non-family Fibro sufferers i know. There are very few specific Fibro medications here in the U.S. but i believe all of them contain gabapentin. Another treatment method common here is the use of an anti-depressant because some "think" the cause of Fibro might be centered in the same area of the brain that some forms of depression come from. Well, as you said, you're not depressed (and neither am i), so please consider not allowing them to pawn an anti-depressant off on you.

Here is what has helped me the very most: regular exercise (a gym membership being the best thing i ever did for myself) along with a proper intake of water .... not just fluids, but water ...the occasional use of an over-the-counter anti-inflammatory and a (painful) deep tissue massage when the budget says i can.

If your diagnosis does come back as that of Fibro, don't despair and don't think it will ruin your life. Attitude sometimes really is everything. The exercise and massage does hurt, but push through and in a few weeks you'll notice a reduction in pain.

A recent study (sorry, can't find the link right now) took a group of Fibro patients and broke them into 2 groups. One group did gentle stretching exercises and the other group did Tai Chi (sp?) At the end of the study, the stretching group reported only a little improvement; however, the Tai Chi group reported significant improvement. I've purchased a Tai Chi dvd and am going to add it to my regimen and see if it helps. Who knows? It might, though! =)

It sounds to me like you're in a really bad flare. Fibro will sneak up on you, so to speak. If that's what you have, you've likely had it for years and just haven't noticed the increase of pain because it's been incremental. It's impossible not to notice a flare, though.

The issues with your hands and feet may come and go or may stick with you for a while. Develop new habits of how you pick things up in order to avoid dropping them. Try working your feet and ankles before standing when awaken in the morning or if you've been sitting for a while. Rotate your ankles in both directions, flex your feet back and forth, bend and unbend your toes, then get up slowly and take your first few steps slowly.

Through the years, i think they've had me on about every medication they thought might help, but the truth is that they're just treating the symptoms as they don't yet know the cause. Medicating the Fibro patient truly is a case of "practicing" medicine. I think the docs mean well and are trying to provide relief but it's just a guessing game for them and sometimes they get lucky and one medication or another will help the occasional patient for a little while and then it's back to square one.

Lastly, if you've had a particularly draining day with a lot of strenuous activity, it's okay to take it easy a little the next day. However, try to avoid the self-inflicted trap that many Fibro patients put themselves in by giving up on activity ~ that's the absolute worst thing you can do.

I don't know how you'll come to feel about Fibro, but here's my reality with it: I have it. It hurts. It's going to hurt whether i participate in life or not. Each of us have burden(s) to endure and Fibro is one of mine. I choose whether or not i allow it to control me. For example, today i can't type more than a sentence without my left hand going numb. I shake the feeling back into it and then i type another sentence. I very much take a "Scr*w you, Fibro" attitude.

Good luck to you. You have my sympathy and my empathy ... just don't let the damned thing get ya down! =)

reply to post by SeesFar


those are very good words I like you have the exact same symptoms hands going numb I think is the worst for me I used to love to blow glass, write , play guitar but anything that has to do with using my hands or fingers and repetition for more than a min they cramp up or go numb.


you are exactly right when with your attitude towards it I think the best therapy for this pain is attacking it with a good attitude and hard work stretching exercising and being positive.

it does help to know there are others out there who can manifest/imagine this intense pain with their mind.

Originally posted by -W1LL
reply to post by SeesFar

 

those are very good words I like you have the exact same symptoms hands going numb I think is the worst for me I used to love to blow glass, write , play guitar but anything that has to do with using my hands or fingers and repetition for more than a min they cramp up or go numb.


you are exactly right when with your attitude towards it I think the best therapy for this pain is attacking it with a good attitude and hard work stretching exercising and being positive.

it does help to know there are others out there who can manifest/imagine this intense pain with their mind.

Thank you and *LOL* @ "manifest/imagine this intense pain with their mind." Good one!

I worked with stained glass for many years. Husband won't let me now 'cause of the hands issue .... he says i'll cut my wrist and not only will he have a mess to clean, but his supper wouldn't be ready. (he's j/k) I do miss it sometimes, though.

I do Native American bead work, some gourd carving, and other arts involving fine motor skills. Holding those needles or the burning iron really can cause cramping, but i keep going and the more i go, the less the cramping seems to be. Same with hand sewing. Maybe you could pick up another hobby or two that uses your fine motor skills so you can work those hand muscles?

reply to post by AutomaticSlim


What an excellent post. Thank you - this post is level headed and holistic. I liken this condition to arthritis of the body, or diabetes - meaning it is something you'll have - but through management there can be improvement. I have found yoga to be helpful when I can go. Qi Gong also - fantastic, I practiced when could Soaring Crane form which is very gentle and is a healing form.

Also I agree you still need to be worked up for other issues - and not brushed off as everything being Fibro.

Vamp I want to warn you that sometimes Fibro flares can be so bad - you might feel like you are going to die, or that you must be dying this is terrifying for a single mom. Getting out of the way of your fear about this can greatly reduce the panic that a severe flare can bring on. I know exactly the brain fog - it is literally called Fibro fog. I had a doctor that trusted me to use Ritalin at a very low dose. I have used a whole gammet of things. I don't use the ritalin anymore - but for true fogs it can help wake up the brain. Sometimes a run of steriods or a run of ritalin - seems to get you out of these flares and can give you a few symptom free months. It is important to be very careful though . . . I use the lowest does possible because I also find myself to be very sensative.

What has worked well for me for pain - is Lorazepam. A tiny dose I can can up at my own discretion. I take this PRN - meaning as needed. I like it because it is in fast - out fast. It is a valium class. But the tiny dose I take does not knock me out, I can still do single momma. I take it at night, and it relaxes my body and mind. I get on a heating pad with a timer. There are natural methods too. Catnip of all things is excellent - be careful though I did find it made me have some very mild visual hallucanations.

I am a non-addictive, informed patient and I have managed - maybe through setting intention to find excellent care providers that help me manage. Do not over look the help of a good psychologist - they really are cutting edge on pain and pain management and will help you with alternatives to medications. There are distracting methods. I will bring up again breathwork.

I found the renamed anitdepressants like Cymbalta made me irritable and sensative to noise and I could not tolerate the B-*-T-ch I became to my inocent son trying these types of medications. But they may work for you.

What I can definately understand is the challenges of being a single momma with this dreaded pain disorder.
Please don't panic!!! I know it is hard - and you might need to really vent that dark pain cloud sometimes. I liken it to putting all the stuff in a box. When I am really bad I go over to the Department of Veterans affairs and ask for a pain shot of Torodol - and a Psychiatrist - then I sit and vent about the pain, really I just go all out and complain. When I leave I visualize that I left the black cloud of it behind - it helps me mentally.

Maybe you have nerve damage from the electrocution? I would consider that a possibility.
In any regard, always feel free to contact me - even if just for some single momma to single momma support!
~ Bird

reply to post by SeesFar


Beautiful, empathtic post SeesFar.
I notice a trend - those if us with Fibro - wonder about genetics.
Warn about medications. Encourage gentle forms of excersize and body work.
Talk about diet changes - which help!
Mention self Love and acceptance in some form.

reply to post by SeesFar


I actually have been working with my hands trying to get strength back in them this last summer we rescued two young green horses and have been breaking them, with the end of summer the horses have been getting burrs in their main and tail it takes 30 min to get all of them out doing that almost daily has built my tolerances up,

I think doing different things using all the muscles lightly and fish oil I know that helps I notice when i dont take my flaxseed and fishoil for a couple days.

Originally posted by LittleBirdSaid
reply to post by SeesFar

 

Beautiful, empathtic post SeesFar.
I notice a trend - those if us with Fibro - wonder about genetics.
Warn about medications. Encourage gentle forms of excersize and body work.
Talk about diet changes - which help!
Mention self Love and acceptance in some form.

I was just noticing the same thing.

maybe we are ascending

Originally posted by LittleBirdSaid
reply to post by SeesFar

 

Beautiful, empathtic post SeesFar.
I notice a trend - those if us with Fibro - wonder about genetics.
Warn about medications. Encourage gentle forms of excersize and body work.
Talk about diet changes - which help!
Mention self Love and acceptance in some form.

Thank you, LittleBird. =) After 22 years of being what has often felt like a human experiment, i'm happy to share what little i might have to offer for others to consider and to encourage the recently diagnosed at every opportunity. It's what i admired about your posts.

I truly do not believe there is any medication out there yet for Fibro. As the one poster on here mentioned (the one who writes as though s/he is in the medical profession), Fibro is a syndrome encompassing of a whole lot of components, many of which don't necessarily seem identical from one case to another, though the similarities are greater than the differences. I've experienced and seen much better results with a more holistic approach to this ~ encouragement being the greatest one. =)

I'm grateful to you for your use of the word 'acceptance' in this . Fibro is what it is ... and it is also what we make of it. A good mental attitude toward the pain and discomfort that come with it seems to be the most encouraging thing of all.

There's so much we can do to help others and, most of all, it's letting them know they are not alone in it and those simple, effective, non-medication methods you mention, combined with a positive "I'll beat you!" attitude, are really their best bets.

Even after 22 years of it, i've found i can learn a lot from others such as you and the other posters to this thread who deal with it. None of us have all the answers, but love and encouragement go a long, long way and they just don't make a pill for that. =)

Originally posted by -W1LL
reply to post by SeesFar

 

I actually have been working with my hands trying to get strength back in them this last summer we rescued two young green horses and have been breaking them, with the end of summer the horses have been getting burrs in their main and tail it takes 30 min to get all of them out doing that almost daily has built my tolerances up,

I think doing different things using all the muscles lightly and fish oil I know that helps I notice when i dont take my flaxseed and fishoil for a couple days.

 

Originally posted by LittleBirdSaid
reply to post by SeesFar

 

Beautiful, empathtic post SeesFar.
I notice a trend - those if us with Fibro - wonder about genetics.
Warn about medications. Encourage gentle forms of excersize and body work.
Talk about diet changes - which help!
Mention self Love and acceptance in some form.

I was just noticing the same thing.

maybe we are ascending

edit on 11/11/2011 by -W1LL because: (no reason given)

Getting burrs out of horse tails! *L* Wish i had a dollar for every burr i removed from a horse's tail during my teen years. That'll sure work those fine motor skills and you get the added benefit of exercise while working with the horses. Sounds like you've had a nice summer. Now for a winter activity to keep those hands in good shape? Have you ever tried carving or basketry, knitting or crocheting? Even something as simple as the little peg looms and fabric loops we made potholders with when we were children. Just anything to keep the muscles limber and moving.

The fish oil and flaxseed is something i've wished i could try, but allergies prevent me. Ditto with glucosamine.

Ascending? =) A nice thought, isn't it? Maybe in some ways we are.

Check on the disease at www.Whale.to, they have an insider look at a lot of diseases, and can shed light on the problem in ways that medical industry might ignore.

www.google.com...

I especially recommend looking into this :

MYCOPLASMA
The Linking Pathogen in Neurosystemic Diseases

Despite reporting flaws, there has clearly been an increased incidence of all the neuro/systemic degenerative diseases since World War II and especially since the 1970s with the arrival of previously unheard-of diseases like chronic fatigue syndrome and AIDS.

According to Dr Shyh-Ching Lo, senior researcher at The Armed Forces Institute of Pathology and one of America’s top mycoplasma researchers, this disease agent causes many illnesses including AIDS, cancer, chronic fatigue syndrome, Crohn’s colitis, Type I diabetes, multiple sclerosis, Parkinson’s disease, Wegener’s disease and collagen-vascular diseases such as rheumatoid arthritis and Alzheimer’s.

Dr Charles Engel, who is with the US National Institutes of Health, Bethesda, Maryland, stated the following at an NIH meeting on February 7, 2000: "I am now of the view that the probable cause of chronic fatigue syndrome and fibromyalgia is the mycoplasma..."

I have all the official documents to prove that mycoplasma is the disease agent in chronic fatigue syndrome/fibromyalgia as well as in AIDS, multiple sclerosis and many other illnesses. Of these, 80% are US or Canadian official government documents, and 20% are articles from peer-reviewed journals such as the Journal of the American Medical Association, New England Journal of Medicine and the Canadian Medical Association Journal. The journal articles and government documents complement each other.

www.whale.to...

This report still gives me chills :

Testing via Mosquito Vector in Ontario
The Government of Canada had established the Dominion Parasite Laboratory in Belleville, Ontario, where it raised 100 million mosquitoes a month. These were shipped to Queen’s University and certain other facilities to be infected with this crystalline disease agent The mosquitoes were then let loose in certain communities in the middle of the night, so that the researchers could determine how many people would become ill with chronic fatigue syndrome or fibromyalgia, which was the first disease to show.

One of the communities they tested it on was the St Lawrence Seaway valley, all the way from Kingston to Cornwall, in 1984. They let out hundreds of millions of infected mosquitoes. Over 700 people in the next four or five weeks developed myalgic encephalomyelitis, or chronic fatigue syndrome.

(same link)

My condolances to anyone that contracts those, and not to be a fear-monger, but if this research is correct, there is an ongoing danger in mycoplasma that we are not being made aware of which could be the source vector. I have a good friend with FM who saw a specialist after months on a waiting list, and he provided her with a book a couple hundred pages full of information and coping means.

reply to post by Northwarden


Wow. That is a lot of information and nearly scared the Christmas outta me. I've read the article you've provided and will look up some of the citations and research the mycoplasma thing a bit more just as soon as i have a chance.

I don't know what to say, but i absolutely will not dismiss what you've provided without looking into it further. I'd like to research to see if there's any evidence indicating that once infected with the mycoplasma, one can genetically pass it on to offspring.

Thank you for taking the time to provide the information.

reply to post by Northwarden


I cant thank you enough for posting this article this is the first knowledgeable research article i have read I am looking for sources now but first I am going to try and find a Dr to get these tests done.

this article however is very scary and makes me think twice about all the chemtrail threads.

there is so much info in that article I hope everyone reads it all I could quote the Gov. conspiracy surrounding the cause of these diseases, the testing done to our own citizens through lies and the cover of scientific research or the reasons why...

the most important quote from the article for us suffering with this, is at the end.

The body undoes the damage itself.

The scarring in the brain of people with chronic fatigue and fibromyalgia will be repaired. There is cellular repair going on all the time. But the mycoplasma has moved on to the next cell.

In the early stages of a disease, doxycydine may reverse that disease process. It is one of the tetracycline antibiotics, but it is not bactericidal; it is bacteriostatic—it stops the growth of the mycoplasma. And if the mycoplasma growth can be stopped for long enough, then the immune system takes over.

there is hope our bodies are strong there are tests that can tell us whats going on in our bodies and there are treatments to fight this degenerative disease and help our bodies recover.


in a search to contact Donald Scott I found some videos on youtube. here is the man himself, this is truely mindblowing and once i find more sources and research articles I hope to organize all of this including places for testing and treatment so more of us can start healing.

reply to post by Vamp333


I'm going to say this and I hope you seriously take it to heart.

So many people are misdiagnosed with Fibromyalgia when they simply have food allergies. Cut out wheat. And see what happens. If nothing..try cutting dairy. If nothing, still, cut fructose. Then legumes...then processed seed oils (rapeseed oil, aka canola, etc.).

If none of those things relieve some of the symptoms...try a Ketogenic diet, at the supervision of a health professional, of course.

Originally posted by Vamp333
reply to post by AutomaticSlim

 

uric acid level was a little high .. but he puts that down to me not drinking water.

What are you drinking if you're not drinking water?

iron stores are 31.. which is low but as i said they have always been.

Ya gotta eat some meat, dear. Red meat isn't bad for ya. What are you afraid of?

Now lets get the truth on fibromyalgia.

Fibromyalgia is a chronic pain disorder affecting the soft tissues of the body (muscles, muscle coverings and ligaments) over a widespread area from the neck to the knees.

Fibro is not a disorder of the muscles even though the muscles hurt.

Fibro is a nervous system disorder its false signals being sent through the nervous system.
The muscles only hurt because the signals from them are bad.

80% of people vwith fibro have sleep apnea or other sleep disorders.

The top three causes of fibro are autoimmune diseases, thyroid disorders and back injuries. but there are a number of lesser causes.

Lyme disease does not cause fibro. Lyme disease has the same symptoms except there are not tender points with Lyme disease.

Fibro is not curable but is controllable.

For information on fibromyalgia without the BS of sites trying to sell you something and without the lyme disease BS or trying to claim a cure.
Go to Men with Fibro.
menwithfibro.com...

I have fibro co-morbid with Sarcoidosis i also have autoimmune neuropathy, sleep apnea, and RLS.
But i do not have or ever had lyme disease.

Fibro is just as common in countries that do not have endemic Lyme disease as countries with with Lyme disease.

reply to post by DevolutionEvolvd


hi DE

i dont eat most of those already...

i dropped dairy from my diet many many years ago as it bloats me.

i dont eat red meat simply because i dont like the taste of it.. i do occassionally eat lamb.

i eat alot of fruit + i drink mostly fresh fruit juice.. occassionally pepsi

ok.. before i start going back + reading all the posts i'll just say..

yesterday was a good day.. best day in 4wks actually.. only slight tingling pain in my hands.. so i decided to go out + help a freind with a bbq funraising she was holding... i was on the bbq cooking for about 4-5hrs.. still the pain was better than it has been.

this morning i woke up.. moved.. + screamed.. within 5mins i was in tears from the pain in my arms, shoulders + lower back.. not having a good day.

reply to post by Lionhearte

thankyou so much for ur post + sharing ... sorry about the loss of ur mother xo