|FibromyalgiaPage 1 of 8 (1, 2, 3, 4, 5, 6, 7, 8)|
|Anyone have any experience with this condition? Someone very close to me has been diagnosed with it.|
Posted: 10/11/2005 9:56:29 PM
|Knock out flour and suger completly for two months and she will be feeling better most likely. Talk to doctor first. Don't knock it until you try it. It works. No cheating. You have to clean out your system of the built up fluids. The flour and suger, causes the fluid to get thicker than normal which confuses the brain signals to where the help is needed. |
Your body is saying help me, and help is being sent out, but don't know where to send it, so it keeps sending it out. Over time it builds up in the system, and there gets to be more problems from it. Brain waves don't flow well in thicker fluid. Its hard to pin point where the problem started at, that had the thicker fluid around it, that needed the help in the beganing. So it never got help. Now you have more fluid getting thick at other places in the body as well. They aren't enough to show up in test, just enough to mess up brain waves.
After you start feeling better, start adding your suger, and flour back in, keeping track of your carbs. So you know when the signs come back to let off again, and to how many carbs you can be o.k. with. Mostly comman scence.
I have it, and don't have to take meds for it no more after I did this. What can it hurt to see if it works for you to. Talk to your doctor first. I am not a doctor. I just did a lot of reading, and kept track of mine, and put two and two toghter, and it has helped a lot of people, be med free. so talk to your doctor. If you don't know about carbs, check akins diet to learn. Its easier to just cut out suger, and flour. Just my intake on it, each to their own, all people are different. I will tell you its nice to live like I don't have it. So think about it.
Posted: 10/13/2005 5:14:01 AM
|Thank you so much for your advice. I will pass it on to my friend.|
Posted: 10/15/2005 7:52:07 AM
|yup; got it, had it for at least 17 years before much was known.|
docs scared the crap outta me after a sedimentation rate blood test,
(which rates the amount of pain in system; not the cause or location of...
it's determined by the rate at which certain cells fall from others via a spinning machine)
normal range is 6-10; i was at 66... and curled up, felt like i was dying from joint pain.
from my high rate they told me straightout i was rheumatoid variant
or had some undetected rare form of cancer...which i didn't and don't.
sammy beat me to it;
avoiding sugar/flour/processed foods is key in tackling this excruitiating "syndrome".
also, yoga/beginning pilates or simple stretching excercise is important too.
personally i like hydrotherapy because it's stress reducing.
but so is getting involved in activities you like and can lose yourself in.
keeping a journal of what's going on with you may help you find patterns to avoid.
and can also be therapuetic too. as can meditation and relaxation techniques.
when i get a flare that has overwhelming pain the stubborn part of me tries to hold out.
i don't like pain meds, but a child's dose shot of kenalog has me better in a few hours!
i am also chemically sensitive/severly allergic to many drugs and everyday things.
felt like a freak till i took an active part of self learning regarding this insiduous thing.
don't let the diagnosis become you,
keep searching for what works best for you.
seek and you shall find, this works if you put it into practice, i promise!
gaining control over your own health is the answer.
anyone would try anything to feel pain free, and it's easier than it sounds.
Posted: 10/15/2005 8:16:00 AM
|i meant life threatening emergent allergic reactions; |
no more shellfish (sigh, a small thing, but i do miss it) or tylenol and many other meds, both over the counter seemingly harmless, and prescription for me.
any new medication is a gamble,
i have to be monitored in a quick care or er while taking first doses of new meds.
even some homeopathic and "natural" remedies can be threatening.
anaphylaxsis is not a pretty thing;
literally fighting for life and breath is a serious and sometimes fatal condition.
what attacks some does not attack all; everyone's body is so different,
medical science isn't the end all answer.
different meds have also saved my life, under extreme supervision.
i hope everyone with fibromyalgia doesn't have all that comes with mine.
it can be pretty much a nightmare;
but also another chance to learn and understand what works and doesn't~
personally, that has been the key.
Posted: 10/21/2005 9:08:45 PM
|I have fibro and managing it pretty well with herbs and massive vitiman and mineral therapy and staying away from most of the crap they sell in grocery stores. One thing I've found is that most fibro sufferer have very thick blood which keeps oxygen from reaching areas supplied by the smaller capilaries. The thick blood can't get through the smaller vessels and the resulting lack of oxygen causes a lot of pain. Anyone who's had a limb go to sleep knows that, as the limb comes back to life there's a brief period of pain untill full circulation is achieved. |
You should have your doc check your pro time to see if you have thick blood and if you do then heparin could possibly give you much relief or if you prefer the alt med route, then serrapeptase is your best choice
Posted: 11/7/2005 5:40:25 PM
|ok, i feel like a real dork here, |
particularly in light of my prior posts in this very thread.
i'm in the throes of an excruitiating flare and besides myself.
i went to the doc today after not getting much sleep this weekend past.
now i hafta wait for the referral to a new rheumatologist as my insurance dictates.
meantime i'm using alternating ice and micro rice packs and small doses of ibuprofen.
that lemon cheesecake in raspberry sauce yesterday after lunch really kicked my ass.
and i even had a kenalog shot last month.
back to physical therapy and dr ordered massages too.
i abhor this "syndrome."
Posted: 11/7/2005 5:55:21 PM
|Ultravox - I'm really sorry to hear about your flare-up, I know it can be excrutiating, I hope it goes away soon...|
a friend of mine has been suffering from fibromyalgia for a long time too, and only recently she's been trying the dietary restrictions thing...I was wondering, if some over the counter pain killers make the pain worse, do some high-power prescription meds exacerbate it too??
my friend has been on some serious pain killers for years, and she is still constantly hurting...her diet has been pretty bad all of her life, but she teaches water arobics five days a week...is there any chance the prescription pain killers are doing more harm than good??
Posted: 11/7/2005 6:59:02 PM
|thank you, franny z, for your kind words.|
i refuse to take and become addicted to any of the many meds i have been prescribed.
one of my biggest problems is not acknowledging this diagnosis and carrying on as if i don't have it, that is, until it becomes so debilitating and severe as to interfere with my work.
as yet i have tinkered here and there with my own dietary restrictions to no avail; save for as sammy stated, avoiding sugars, flours, and heavily laden chemically processed foods.
i have also found that for me dairy, grains, wheat and gluten trigger flares.
i've had numerous medication reactions even to vitamins that have landed me in the er and while docs agreee the meds cannot be tolerated sometimes are still at a loss as to how to proceed. some think it may be the bonding agents in some cases, rather than meds themselves.
the cheesecake i had yesterday while delicious with each and every small bite literally has me in an undeniable huge flare; not worth the few minutes indulgence.
the new doc i saw today recognised FMS as what it is, and immediately referred me to an associate of hers well versed in all phases of the syndrome.
i've endured the syndrome for more than 15 years now, and finally have been given the indication that this specialist will take the time necessary to treat my case in all phases, dietary, physical and has even treating the stigma even i myself have with it.
it's difficult for me because i used to teach aerobics at a southern california women's spa and have always been active; now this "thing" limits some of that and i have a hard time dealing with that on an emotional level; i still expect to do whatever i want whenever i want!
the limitations rear themselves as simply refusing to let me continue with that thinking. i sit here looking at the mountain bike i recently bought; knowing i cannot take advantage of these too few left lovely 70 plus degree fall desert days.
making sure to stay hydrated and get enough sleep are a few other things i've been neglecting, and i know better! hopefully a few visits with the sports physical therapists and some massage therapy combined with heat and ice packs will alleviate this indescribable burning pain untill i see the new doc and get on a complete life renewal program.
i am very much looking forward to it; life without searing, burning, stabbing pain would be more than nice!
before today the last time i cried was last spring when my dear mother passed; but i was reduced to tears after talking with my boss about this crazy syndrome after my dr appointment. i hate feeling so powerless over something that takes over my body for weeks at a time, sometimes months even with the fighting pain continuously.
fighting this kind of pain even takes it's toll on my breathing patterns i notice.
i wonder if anyone else with FMS has noticed this for themselves?
sorry to ramble, thanks for reading AND your kind words; i cannot answer your query because i won't take the strong stuff prescribed; as many years back i was practically immobile for months then, even while on those types of medication.
even in these depths i prefer less invasive therapy and still seek alternatives.
hopefully a managed dose of supplements, herbal therapy, monitored pt, and a doc willing to go through the long process of ruling out what will and won't work for me will bring relief.
for anyone with this i can truly identify. Health and Godpeed to all of us.
Posted: 11/7/2005 7:43:28 PM
|don't ever apoligize for going on, especially not about something like this....fibromyalgia is a truly a terrible thing because it is so debilitating...I know from my friend's experience that aside from the pain and immobilization it causes, people also suffer from it being such a misunderstood condition..my friend is a grade-school teacher (sometimes full-time, sometimes substitute, sometimes assitant, etc) and she has actually lost jobs because of Fibromyalgia; because of the relatively undefined nature of the condition some employers have refused to accept her missed time as anything other than psychological...I am just so sorry that you're suffering from it and I really hope you recover soon...and thanks so much for posting on this, and I will pass along the info about the bonding agents in certain meds and supplements, your input is truly invaluable...the only thing I have to offer is that I read that the hormone COLOSTRUM, found in breast milk and cows milk may help (and I think it can be purchased in the cow's milk form as a concentrated supplement), as well as magnesium and coenzyme Q10...i'm sure you probably know about those things, but I thought I'd throw them out in case they could be of some use...I wish you a speedy recovery and all my best wishes|
Posted: 11/8/2005 11:48:51 AM
|You were talking about your body going to sleep, and the thick blood.|
There is fluid in the blood, and when you lay still the clear fuild weighs more and settles. When you have a lot there and its thick, the blood don't run normal, putting your body parts to sleep until you move, and making you hurt and be stiff. (Have you ever woke up and one part be really cold and not the other parts.)
Don't belive me, poke your finger on one hand, and see if its thick are thin, and then do the other. Sometimes they are different, because of where the fuild is at in the body. When you lay still and get up, you hurt more for awaile until you get it worked lose. When the sceincetist find away to keep it from settleing they will have fixed it, and the signs will go away.
Posted: 11/9/2005 2:54:51 PM
|Hi there psychman - yes i have got fibromyalgia - have had it for the last ten years also have chronic fatigue syndrome - if you want to learn about this illness then log onto Immune Support.com - by Pro Health - they give all the information and help that is available - it is a very helpful site and they will also send you a weekly news update to your email address - i hope this is of some help to you and your friend - it certainly has been for me - i wish your friend well very soon - good luck.|
Posted: 11/11/2005 1:03:12 PM
|Thank you for the post, 2ndhandrose. I will look at the website. I have researched this topic so much, I feel like I could write a book about it.|
Posted: 11/11/2005 11:37:51 PM
|My ex-wife has it. It highly effected our relationship in every way imaginable and it's hard not only for her, but it was for me as well. The most important thing for those of us who do not have fibromyalgia but are with or close to those that do is - be supportive and understanding and exercise much patience. Losing weight is a must for those afflicted if overweight. The complaint might be that the pain is too much to bear but without going through it to lose weight, it will only get worse with time. Best of luck!|
Posted: 11/13/2005 4:22:31 AM
|I was diagnosed with FMS almost 3 yrs ago, but I've been really lucky so far. I have a high pain threshold and my symptoms are usually on the lower end of the spectrum, interference-wise. But when I get a flare up, it puts me down like a punch from Evander Holyfield.|
It can be tough but I try not to let the disease define who I am or what I can do. I've learned to listen to my body more and respect its needs more than I would've if this had never happened to me.
I found it difficult to work out at the gym that much because most of the machines and exercise classes were too painful so I wasn't getting any cardio or muscle strength work done. But then I tried a bellydance class and it's been the best thing I ever did for my condition. I also went to a doctor of Chinese medicine and had accupuncture done to rebalance and unblock my energy pathways. Keep in mind that alternative medicine can work in cases that traditional western science thinks are beyond help. Keep exploring options and treaments.
Posted: 11/27/2005 12:20:27 PM
|hadit since 95|
and the information i am reading now is that people with fibro tend not to get into alpha sleep
the time when the body repairs itsself
hence the constant fatigue
whichleads to our pain receptors firing off all the time
eventually you learn to deal
and if that means a snooze in theafternoon then thats what it means
heat on sorespots helps too
ihave not found any diet thatrelieves symptomsyet!
stress is the enemy
for exercize a swim is easy on the jointsand keeps you mobile followed by a whirlpool
mostdocs are prescribing noramitriptilineto ease body pain in very small amountsitseems to work well ive been much more active since taking this stuff with less pain!
hope thishelps a bit
Posted: 11/29/2005 1:19:54 AM
|My moms has fibro..but she also is on meds for high blood pressure, diabetes, has asthma, etc, that her Doctor won't put her on anything for it. I bought her one of those bracelets for her birthday (you know the 'magnetic' ones) and it helps her alot..suggest she try that in addition to a good diet.|
Posted: 12/5/2005 4:19:06 PM
|had it bad since 1991, came on suddenly, has settled into the muscles and jowls, pretty dehabilitating at times. Don't take any meds as I cant find a doctor who treats it. I figure mine is caused by a virus that is akin to what causes cold sores in the mouth.|
Posted: 1/15/2006 5:29:07 PM
|the pain management "specialist" i was referred to last week was a huge disappointment;|
despite his option of prescribing pilates and other types of therapies,
he only wanted to discuss narcotic therapy and cortisone shots that
as he said were "likely to last 6 to 12 months" for living pain free.
no thanks, as i'm not into narcotics or shots.
so, it's back to pt and massage therapy for me.
Posted: 1/15/2006 5:29:15 PM
|oops, double post; sowwy.|
Posted: 3/31/2006 7:45:24 AM
|The most frustrating thing I have found is that I have been going to my fam. doctor for many years with signs and syptoms,..so many of which that seem unrelated to one another,...|
yet they are ALL there on the list for fybro,...
why the he!! didn't my doctor send me off years ago to be tested???,...
has anyone found the same problem with the lack of knowledge of physicians?
I am almost beside myself with the intensity of pain and lack of mobility that I feel about 102 yrs old,...but all my doctor seems to do is give me pain meds,...a handycap sticker and a cane,..so,..now what???
and what do you do if you are on a very low income and have no coverage for perscriptions???
I can't afford to buy vitamin and mineral supplements,..and I'm this close to dsaying what's the point and call it a day,...
as for the quality of life,..there isn't much,...
to make matters even more frustrating,..from time to time I feel almost good enough to be normal,...I think that's just God's way of reminding me of what that is,..and it had me wondering if I could possibly be making it all up,....
I have been suffering with IBS,...for over 15 years,...and have had hypothyroidism for at least as long if not longer,...both of which can lead to Fibro,...
I know they make strides in medicine every day,..is there a cure?
and or a best way to deal with this disorder,....one that doesn't cost a lot?
Posted: 3/31/2006 8:09:31 AM
why the he!! didn't my doctor send me off years ago to be tested???has anyone found the same problem with the lack of knowledge of physicians? there is NO test, per se, the only one i know of that isn't definitive is the "stress points" which can send one practically flying off the exam table in the pain of an acute flare.
this isn't a disease, it's a type of disorder as far as i know. i have off and on struggled with this since the early 90's when i had my most excruitiating and longest lasting "flare." now it seems to be triggered by my allergies, periods of extreme stress or overload of tiredness. the best remedy i have found, thankfully, is recognising when i am going into a flare and paying attention to get enough rest, eat well, and light excercise until i am feeling well enough to resume more extreme physical activities again. in other words, be nice to yourself and listen to your body symptomology when you feel it coming on. in the midst of it do your best to relax and baby yourself, don't let it take over your life completely if you can avoid it. it is a most insidious monster.
medical science is called a "practice" because that's exactly what it IS.
everyone is made up differently and this thing isn't a disease, it's a syndrome.
we are far more individually responsible for our own bodies than any doctor ever could be;
so i believe it is up to ourselves to learn the slight shifts indicating an impending flare, and acting accordingly. avoid as many chemically processed foodtuffs as possible, (it's cheaper to eat healthier, anyway) and any known/learned irritants... i cannot stress enough the benefits of relaxation and proper rest. mild excercise will help to lightly keep the joints and tissues more flexible and fuller/better sleep will ensure a quicker recovery.
my worst flare lasted a good three months and now i know at the first signs to get to my doc, pronto, get a kenalog shot, take breathing treatments via my nebulizer, eat better and get as decent and full rest as possible. i'm in an allergic flare right now, been out of work since wednesday, but i know taking care of myself now will keep me out of the hospital, and i will be better by monday and back to work. i also know if i didn't heed my symptoms i may get extremely sick with some variant viral problem, and well end up in the hospital er for days, as i did last year, with excrutiating immobilizing pain, a fever of 103 for days despite taking steroids via iv, orally and inhaled, along with various other meds. i dont wanna go there again... and several docs were stumped, fibromyalgia is a cluster syndrome, and affects and is brought on by as many different things as there are people afflicted with it.
good luck to you marita, we are here, and we DO understand your frustration.
Posted: 3/31/2006 9:34:43 AM
|FYI to me,...just how do you get the rest you need if youo can't sleep but a few hours at a time,...and even with that you are constantly in discomfort no matter what position you are in?|
and can this be brouoght on due to enviromental things like fungas in your home?
I have had a lot of pain in my life from a variety of sources,..and usually any long term pain you can adjust to and modify yourself around but this,...it's like the severety,..and location keeps moving,...making it more difficult to adjust to,...
only recently I have been having some episodes of sleep apnea making the whole rest thing even harder,....
I do appreciate your help,...
what if any tests have you been sent to for verification?
Posted: 3/31/2006 10:46:06 AM
for me, this has been one major factor in my flares.
i can only tell you what works for me. i have undergone relaxation and biofeedback therapy.
a warm or sometimes hot bath tires me to the point of sleep; but not necessarily restful or length of restful sleep. whereas i once took 3 and a half pills of a benzodiazepene, (which is very addictive and thusly dangerous for many to take) i've weaned myself down to literally 1 quarter of klonopin (clonazepam) each morning and at bedtime. from 3.5 pills down to 1/2 pill a day... it stabalizes my blood pressure, anxiety, sleep pattern and has worked great.
it completely changed my life and has made it manageable and productive again, but it took more than 10 years to get to the point i am now at.
have played a huge part in my flares, as well. i have many allergies, to medications, to some of the bonding agents in medications, laytex, some foods, and environmental things such as molds, various chemical agents as in pesticides, food additives, dyes, perfumes, etc.
my emergent situation last year was suspectedly due to mold in my apartment which i lived in and the management company refused to do much about until they hazmatted my bathroom as i lived in it...at which point i checked myself into a nearby hotel and informed them they would be responsible for the complete stay. the flooring had been replaced due to mold in the bathroom's foundation spread to the interior framework, and then to the flooring. i was given a $400. moving allowance (big woop, huh) and was given a new lease into another apartment not only in the same complex, but simply onto the other side of the same building. by the time i had moved, within one month i found myself so virally ill i went to my dr and was imediately ambulanced to er for several days with high blood pressure, low oxygen levels and a dangerously high spiking fever for days and something attacking my cns with no known cause to the docs. i am grateful to be here today, after serious steriodal treatment and benadryl to counteract the treatment. the at home steroidal treatment included a tapering off from it that took 2 weeks before i was able to go back to work. i was completely and totally out of control of what happened to me at that time. so i know not what to say except molds and fungus are very dangerous to me. i cannot tolerate any cillens, sulfas etc. but we all are different, so our treatments are different.
my first serious allergic reaction resulted in total central nervous system shock, an acute reaction known as anaphylaxsis to allergy shots i received as immunotherapy treatment in spain, in 1987. i received twice weekly injections of what i was allergic to, in an effort to gradually change my body's resistance and acceptance of the agent(s). each time i was made to wait in the lobby after receiving the injections in case of a reaction. but in my case, i reacted more than an hour after getting my injection. had i not chosen to stay on base after my injection that day, surely i wouldn't be here now. i lost consciousness and luckily was around other americans that understood i wasn't merely fainting, and called for an ambulance. i remember the young paramedic with me praying, sweating and crying as i drifted in and out of consciousness. long story short, after entering the er, my allergist ran to administer benadryl and epinephren which in the correct dosage saved me.
i am in a flare right now, brought on simply by the tremendously huge ratio of pollen from a now outlawed from sale or planting of any more of a simple mulberry tree blooming in my valley. unfortunately, most of these trees are confined near a downtown area very close to that in which i work, and we have had high winds the past week or so. the current reported ratios is more than 1500% per cubic meter in my city for the last several days, very high. i have been home sick and off work since wednesday, with symptoms of acute lung/chest pain, difficulty breathing, low oxygen rate, high bp and restlessness. i am grateful and fortunate that my boss recalls my having ben ambuolanced from my worksite a few years back after taking a new medication and also the mold issue i had last year that also sent me to the er for days after mold exposure. i was given one steriod injection wednesday, prescribed a broad spectrum antibiotic and am taking home breathing treatments via a nebulizer. the chest pain is still here, as is the pain throughout my joints, which to me indicates a fibro flare.
as i said earlier, i know of no tests that prove or disprove the existance of fibromyalgia, save for the pressure point test, wherein certain trigger points are pressed upon one's body. the immediate pain shoots throughout the body, stemming from various certain "trigger points."
if they manage to hit on them, you will know it, immediately. and the doc will know from the severity of your reaction. that and sedimentation ratio which indicates the rate at which certain cells in your blood fall in relation to others, only showing somehow a scale of pain within the body, but, unfortunately not showing from where or what. so sed rate tests aren't very indicative of much. my first high rate was a 66, whereas a normal rating is under 10 if i recall correctly. but it still doesn't show WHERE the pain is or from what cause. the doc whose care i was under at that time freaked and prematurely told me i was a rhematoid variant or had some sort of rare cancer or leukemia. not great news to hear, especially feeling so very ill. that was my first flare, and i was given high doses of pain medication which left me as incapacitated as the pain itself. it was like the worst burning painful flu but wasn't the flu, it was a viral reaction as yet unknown in origin.
whereas i was once very active, having taught 10 or more classes a day of aerobics in the 80's i now must be careful to not overdo it, and that's ok because i know not to push myself too hard. swimming, simple stretching and light weight training, a bike or hike are ways i have managed to do ok with, without going overboard. there have been times when the only relief i received from pain was while in physical and massage therapy, and could actually fall asleep while undergoing it, but very restless at home when i was supposed to be relaxing. near impossible to relax when your body chemicals and sleep pattern are already involved in a vicious cycle of a fibro flare. even more so when one cannot tolerate many medications normally used to treat those symptoms.
i have rare flares now, and they seem to be abating in pain, but i am ever vigilant when i begin to physically not feel right, or become overtired, as those times leave me susceptible.
again, finding the right set of doctors is most beneficial and key to your health.
i suggest you do any and everything possible to get away from the mold, it CAN prove deadly to those with sensitivities to it. also, again, good luck to you in finding the right doctor, a good team is a necessary part of any treatment. while bedside manner is less important than knowledge, it sure does help to have an understanding and caring doctor that LISTENS to you, respects you, and encourages you to become the most necessary factor in your own health. i am careful to only see doctors that accept and work with me regarding my numerous allergies and take me seriously rather than the ones that consider themselves Gods that are all knowing. after all, who knows us better than ourselves?
Posted: 3/31/2006 1:59:22 PM
|i am goin to be goin for my first set of cortisone shots soon...but i have no idea what to expect...at this time i am only needing it in one wrist..as my other pains are not as severe|
anymore..except in wrist...it has been xrayed.and ultrasounded..and sofar nothing visible showing up for that area..so they figure the cortisone shot should help me there.
i have tried many things sofar to help live with the pains that i get..as i usually only have most of my problems in the morning..
have found high protien does help..and am constantly on the go all day so as not to sit too long (or i wont be able to get back up)
i even have a little pedal gadget that i use to keep legs moving while i type here on the computer...
but any advice on how painful it is to get shots..and if it really does help..would be great.thanks..