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| | FibromyalgiaPage 2 of 8 (1, 2, 3, 4, 5, 6, 7, 8) | that seems to be one of the biggest problems,...finding a doctor that actually puts it all together and doesn't,...there,..there you,.... and send you on your way,...
It seems from the information I have gathered here and elsewhere this is almost a designer disorder,...made different for everybody,...
just like no two people endure pain or even feel it the same,....
so I am assuming the treatments will be the same,...or rather different for everybody,...
I happen to have a high tolorance to all serious pain meds up to and including morphine,..which means for my body weight I require about 3x the normal,..and then I usually if I'm lucky only get enough relief to turn down the volume,...and be functional,.....
this is something that hasn't progressed over years by abuse but has always been even as a child,....and I reqire equal doses of antinauseant to be administered with it,..many nurses have refused even when it was writen in the chart ordered by my physician,...
So I have learned that pain hurts but it won't kill you,....although sometimes that's almost a tempting choice,....
and now I can't afford any meds,....anyway,....my GP gave me a script for meds SHE wanted to give me for discomfort which costs about 150.00 per month,...she gave me a script to cover the whole year,...I asked her for something equal in strength but only about 10 bucks for the month,..and she refused,..both were narcotics,...so clearly she isn't listening or caring,..and I need to find someone who considers what is possible for me,...and what is out of the realms of possibillity cost wise,...
and if it is the moulds that make it worse here...I can't even afford to move,...
Here in Canada seeing a doctor may be free but you get 5 minutes with them and then it's next,....
My ex was a Doctor (well actually he still is) ,..gastroenterologist and I ran the clinic for him and spent many of our years together being his office/endoscopy assistant,...so I know all about the God syndrome,...
and you are most deffinately right,...the only doctor that ever helped me for my migrains which are chronic as well was a fellow who also suffered from them,....
sometimes it takes one to help one but a dr with fibro???
and the problem is those living with you get tired of your constant complaints and inabillities,...too,..and who can blame them???
PS,...if you pass out do you wear a medic alert for that?
you have been very helpfull,...and forthcoming,...although I have been dealing with the signs and syptoms for over 5 years,....undiagnosed,...I am at the very early stages of getting help,....but I think I have earned the right to demand nothing less,....and am digging in my heels,....I am not going to be patted on the head and sent on my way again,.... | |
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| Fibromyalgia
Posted: 4/2/2006 5:32:08 PM |
and can this be brouoght on due to enviromental things like fungas in your home?
I don't know if it's brought on by that but I know it sure doesn't help things. When I lived with my ex there was a serious mold problem in the house. I literally had a constant headache (of varying intensity) for over two years. I had a constantly refilled rx for Demerol. The Demerol didn't do much except maybe take the edge off the pain for a couple hours.
My fibro pain is not as constant as it was when I was in the other house. And I no longer have a constant headache. My headaches eased up and then went away with in two months. The pain in the ass and neck was also greatly reduced when the divorce was finalized. I still have bad flare ups but nothing like before when I lived in the moldy house. My main reasons for flare ups now are lack of sleep and stress.
I hope you find something that helps you feel better. Not everything works for everyone. I was told to try extra B vitamins and it didn't help. But it may just have been because I was in the moldy house at the time. I can't stand the smell of the B vitamins so after five months of 'nothing' I quit taking them YMMV  Fibro sucks. | |
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| Fibromyalgia
Posted: 4/3/2006 7:46:23 PM | HELLO, I HAVE FIBRO. HAVE HAD IT FOR SEVERAL YEARS. I WAS DIAGNOSED AS HAVING MULTIPLE SCLEROSIS BECAUSE IT HAS MOST OF THE SAME SYMPTOMS. BUT WITH M.S YOU CAN GET SOME RELIEF. MOST DRS.WILL TELL U IT IS ALL IN YOUR HEAD. WELL IT IS IN YOUR HEAD.LOL NOT FUNNY BUT IS A NEUROLOGICAL THING. THE BRAIN CONTROLS EVERY PART OUR BODY. IT IS EXCRUCIATING. LOSE VISION. LOSE MOBILITY. SEVERE HEADACHES. LEGS JERK UNCONTROLABLY, SEVERE PAIN FROM HEAD TO TOE. CANT BEND, WHENU DO BEND CANT STRAIGHTEN BACK UP. BASICALLY TAKES YOUR LIFE AWAY. VERY DEPRESSING. IF YOU DONT HAVE INSURANCE YOU ARE SCREWED. YOU NEED TO SEE A DR THAT STUDIES FIBRO AND HAS SOME IDEA OF HOW TO TREAT IT. MOST PPL WHO HAVE IT ARE ON NUMEROUS PAIN MEDS. AND ANTIDEPRESSANTS. I TAKE AMYTRIPTILYN FOR THE PAIN IN MY LEGS. IT IS SUPPOSED TO HELP WITH THE JERKING. MY KIDS SAY THEY STILL JERK, BUT IT MAKES ME SLEEP SO I DONT KNOW. I ONLY TAKE IT BEFORE I GO TO BED BECAUSE IT MAKES ME SLEEP FOR AT LEAST 10 -12 HOURS.
SOME TIMES I STILL CANT SLEEP EVEN WHEN I TAKE IT THE PAIN IS SO BAD YOU CANT GET COMFORTABLE ENOUGH TO SLEEP. I ALSO TAKE DEPAKOTE WHICH IS A SEIZURE MEDICINE, I DONT HAVE SEIZURES BUT IT HELPS THE HEADACHES. I TAKE IT TWICE A DAY AND IF I MISS ONE DOSE. I WILL HAVE A HEADACHE FOR AT LEAST 3 DAYS . I HAVE ONE EVERY DAY BUT THE MEDICINE TAKES THE EDGE OFF SO I CAN AT LEAST HOLD MY HEAD UP . USUALLY SO WEAK CANT STAND OR GRIP ANYTHING. SOME PEOPLE USE VOICE ACTIVATED PROGRAMS THAT TYPE FOR THEM. I DONT HAVE ONE, IF MY HANDS HURT THAT BAD, THEN I DONT USE THEM ON THOSE DAYS. MOST OF MY PAIN IS IN BACK , NECK KNEES AND ANKLES. THIGHS . I HAD KNEE SURGERY TO TRY TO HELP IT. IT HELPED FOR MAYBE ONE MONTH THATS IT. ANYWAY JUST TRY TO BE SUPPORTIVE OF YOUR FRIEND WHO HAS IT AND TRY TO LEARN AS MUCH AS POSSIBLE. THERE IS A DR IN LAKE TAHOE CALI. WHO TREATS IT AND YOU CAN GO ONLINE AND HE WILL SEND YOU FREE INFORMATION AND DVDS ON IT. GOOD LUCK.
DONNA | |
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| Fibromyalgia
Posted: 4/3/2006 7:49:41 PM | | FIBRO CAN BE BROUGHT ON BY TRAMA TO THE BODY, LIKE WHIP LASH. ANYTHING TRAMATIZING TO THE NERVES OF THE SPINAL CORD LIKE YOUR NECK AND BACK. CAN ALSO BE CAUSED BY SURGERIES. ANITHESIA TUBES THAT GO DOWN THE THROAT CAN DAMAGE NERVES IF NOT DONE EXACTLY RIGHT. THIS IS WHAT MY DR TOLD ME. I WAS BORN WITH HEART DEFECT AND HAVE HAD NUMEROUS SURGERIES. I HAVE ALSO HAD CANCER AND HAD SURGERY FOR THAT AND MY GALL BLADDER. BUT I WAS ALSO IN A VERY BAD AUTO ACCIDENT SOME YEARS AGO SO I REALLY DONT K NOW WHAT CAUSED MINE . THE DR SAID COULD BE ANY OF THESE. | |
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| Fibromyalgia
Posted: 4/3/2006 8:48:16 PM | LOSE VISION. LOSE MOBILITY. SEVERE HEADACHES. LEGS JERK UNCONTROLABLY, SEVERE PAIN FROM HEAD TO TOE. CANT BEND, WHENU DO BEND CANT STRAIGHTEN BACK UP. BASICALLY TAKES YOUR LIFE AWAY. VERY DEPRESSING. IF YOU DONT HAVE INSURANCE YOU ARE SCREWED. YOU NEED TO SEE A DR THAT STUDIES FIBRO AND HAS SOME IDEA OF HOW TO TREAT IT. MOST PPL WHO HAVE IT ARE ON NUMEROUS PAIN MEDS. AND ANTIDEPRESSANTS. i am sorry to hear of the severity of symptoms above referred to as fibromyalgia. i've been diagnosed for more than fifteen years and have never dealt with any of the above symptomology, with the exception of difficulty falling asleep. and that, coupled with the amount of stress i encounter or allow to overwhelm me without doing as i know i ought, as relaxation/meditation, swimming, hiking, etc. i notice when i make and take time out to do things i really enjoy, or even do more little things i enjoy i've noticed my flares dissapating in severity, but i also partly attribute that to the dry and warmer climate i live in, and even that is suspect, who knows? my intolerance of chemical, medicines, foods and herbal treatments have not lessened in their severity. i refuse to be on numerous pain meds or find a need for any antideppresants. i'm allergic to tylenol, so i have to take motrin, ibuprofin or aspirin based meds for pain. i'm currently in a flare for over a week, and have yet to take even an ibuprofen, i just don't like taking stuff if i can manage without it. steroidal and antibacterial treatments, while lifesavers, come at their cost to my physical self, but the benefits ultimately outweigh the inconvenience to drag me out of a flare, or more seriously, an er visit or hospital stay to get my system back to safety and out of danger.
again, fibromyalgia is an elusive and insidious syndrome, with the sufferers having such varying degrees of symptoms making it difficult to diagnose. i wish all with it, or those that care about someone with this monster, all the best in this maze of confusion and pain.
do whatever you must to keep yourself as healthy as you can, rest, eat right, excercise as mildly or as strongly as you can or need to gain strength. keeping things simple is best for me. i can't say enough about relaxing baths, whole foods and healing physical touch helping more than i can say. knowing there is an end to the pain and flare helps me get through it, and i can concentrate on living to my fullest potential. fibromyalgia taught me i used to take my health very much for granted, and also that i will never have that option again, so i'd better make the best choices, and take the best options now to ensure my best future. | |
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| Fibromyalgia
Posted: 4/4/2006 8:48:10 PM | There is a new treatment that you can also try...Emotional Freedom Techniques...EFT for short. It's a process of tapping on the same energy meridians that are used for acupuncture...except EFT uses no needles.
Here is an exerpt from a case study:
The EFT is working just great for me, it is night 13 of falling asleep without the pain of the Invisible Chronic Illness (fibromyalgia) and this is a phenomenal record for me. Since 1991, the onset of this illness, I have not had two pain free nights in a row. The tapping has been done whether there is pain or not. Your inspiration at the Las Vegas Convention and our one on one consultation was just what the "doctor ordered." You are very much appreciated and a great big "Thank you."
With best wishes, I am
Janet Cole
Here's another:
I've used it [EFT] very successfully with a woman diagnosed with fibromyalgia. The technique helped not only in relieving her pain, but in increasing her feelings of energy and motivation. This was during a period when there had been no changes in her diet, medication, or usual pattern of activities, and the changes happened rapidly, so I'm relatively sure the EFT was responsible.
I have also been happy with some preliminary work with a person whose arthritis pain was impeding therapy. Regards, Ken Barclay, MS, MHP
It's easy to learn and certainly worth a try.
Message me for more info.
Bob | |
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| Fibromyalgia
Posted: 4/5/2006 5:07:09 AM | what does MS, and MHP stand for and the threrapy you mentioned has been around since Jesus was in shorts,...for some it works and for other's not so much there are many web sites and books on the subjets,...
I have tried it myself for migraines in the past,...occasionally it helps,..often it doesn't but it does NO DAMAGE, has no adverse side effects that I know of and so it can't hurt anyone to give it a go,...like they used to say about chicken soup,...
may not help,..but,..couldn't hurt,...
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UPDATE,...I had an appointment yesterday with my family doctor,....who first appologised for the mix up with her office staff last week,..and then we talked,...for over an hour which is kind of rare for a GP office visit where they hustle you in and out ,...usually in under ten minutes,...
I mention this only because of what I had done to prepare for this visit,...after I left her office last week I was as usual in a great deal of pain,....but now I was mad too,...
so I sat down and wrote out everything I had that was physically bothering or hurting or immobelizing me, (at that time),...
I gave each sign,and symptom,...a grade 1-10 in severity of pain,....and I added the first onset,...how long each had been going on that was currently present,...and what I have tried that made it better,..worse or had no effect either way,....
I also added any signs and syptoms that I had previously complained to her about and what she told me to do,..be it theraputic,..or RX,.. and again what the outcome (if any) there was.
and with all of that I went surfing on the net,...to see what could possibly responsible
ALL THOSE SEEMINGLY UNRELATED SYMPTOMS,....the only thing that kept coming up again and again is fibromyalgia,...
So I read as much information as I could AND,..I found one site that summed up everything I had endured and suffered,...(not to mention complained to her about) in the past,..and was plauging me still,...One site had in 3 pages summed it all up,...If I didn't know any better aI could have written it,...I also printed it up and had it with me for my office visit,...
First during that hour I recapped everything I had already brought to her over the course of the better part of 10 years,...
then I explained what was going on with me that day,...I asked her if she could think of anything that could account for all of that,...Fibro was among one of her choices,...
So I asked her how much she knew about it and sadly it wasn't what I had hoped,...so I gave her all of my information,...my own notes and the site info,...
Because over the course of the last ten years she had already sent me on numerous test,..be it bloodwork or x-ray, or MIR,..or bone density etc,..etc,...etc,...all of which came back either on the high end of normal or normal,...now this made sense to her too,...
because once a suspicion of fibro is being considerd,..the preponderance of testing is done,..
NOT TO CONFIRM the diagnosis,..but TO RULE OUT ANY OTHER POSSIBLE CAUSE,...or contributing factor,...(IE,...I have been IBS for 15 plus years,...a migrain sufferer over 35 years,...have been in 3 major car accidents causing whiplash,...had multiple surgeries,...and am hypothiroyd for almost 20 years,...as well as osteo arthritic (for which I took VIOX for almost 3 years) about 7 years now stemming from an on the job related injury)
so there is this chicken egg factor at work,...do I have fibro because of a preegsisting factor,...or is it the end result??? Ultimately it'll be impossible to know for sure but who cares,..at least now it is being agnowledged,...and can be dealt with,...
In the intrim she is treating me on the presumption and for the symptoms that are currently present,...(THANK YOU GOD!!!!),....and thank you who have helped me here,...
I never would have guessed the simple act of listening,..and validating me,..would mean as much as it did yesterday,....
Something worth mentioning,...I have actually on many occasions minimized the true ammount of discomfort and severrity of symptoms to her,...now you would think "I KNOW BETTER" having spent a great portion of my life working in a nursing capacity,..in hospital, clinic and private home settings,...turns out,...this is NOT UNUSUAL,...seem to be that many of us do just that,....so that in case the testing comes back negative,..which many of us know often is the case,...we will seem less nuts,...
my recomendation to you all out there,...DON'T DO THAT,.....
the best weapon we have in supporting our own personal heath,...is DOCUMENT!!!!
I can't overderstate the importance of this,...because we also all forget,...
one other thing to mention is,...there is no bigger patsy on the planet than a person in a great deal of pain,....we will do almost anything try almost anything,...
JUST TO MASKE IT STOP !!!!!!,....
So before any of you shell out a lot of money on things,...do your own research,...
As I discovered,...our home computer is a powerfull thing,....and it's all out there for you and I to tap into,....
because this insiddious disorder comes with a great deal of pain,...and physical limits,...
we will,...or have tried a lot,....and because we are all as different to how we respond to therapy and medication,... as there are symptoms of fibro,....we should try it all,..
including reflexoligy,..accupunctor,...massage therapy,..hot wax,...EFT,...whatever,...
if you find something that works for you,....GREAT!!!!,...fabulous even,...
****just be carefull of calling any one thing the "magic bullet" for everybody,****
because it it has with it the potential of seting us up for yet another failure,...
and haven't we all had enough of that already?????????
just remember where there are desparate people,...there are people willing to exploit them for it,... | |
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| Fibromyalgia
Posted: 4/5/2006 5:48:06 AM | http://www.sover.net/~devstar/
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This is "THE BEST EVER" site I found on the subject,...
it has everything on there from questions,...diagnostic aids to physicians,...and everything you could want to know on treatment,...
Dr DevIN STARLANYL,...is a best selling author who has done extensive research and writing on the subject and many doctors use her information as the bible to help them,..help their patients,...
it also is where I found the three pages that I could have written based on my own experiences and that I took copies of to my physician,,...   | |
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| Fibromyalgia
Posted: 4/5/2006 6:55:17 AM | thank u for posting that site..i did find it very informative...
i dont go see my rheumatologist again until august..but i am taking your advice
and i am goin to start documenting more information...so then maybe she will have some
better treatment options for me..my pains are not too bad at this time, except my non-dominant wrist which is the worst ..and the xrays and ultrasounds came back normal..so
just waiting for more diagnostic tests for that
still havent read much about cortisone shots...if they do work...and if they are overly
painful to get..any help with that is appreciated. | |
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| Fibromyalgia
Posted: 4/6/2006 9:15:56 AM | If you google the doctors name,...you will find a lot of sites,.that are informative,..
It seems she is the person other doctors go to,...for help in looking after their patients,...
as for cortisol shots.......the following is from the American Pain Foundation site,...
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The research on fibromyalgia supported by NIAMS covers a broad spectrum from basic research to clinical studies to behavioral interventions. For example, NIAMS investigators are examining the interactions between the nervous system and the endocrine (hormonal) system and regulation of adrenal function in fibromyalgia patients. Studies have shown that abnormally low levels of the hormone cortisol may be associated with fibromyalgia. Researchers are studying regulation of the function of the adrenal glands (which make cortisol) in fibromyalgia. People whose bodies make inadequate amounts of cortisol experience many of the same symptoms as people with fibromyalgia. It is hoped that these studies will increase understanding about fibromyalgia and may suggest new ways to treat the disorder
http://www.painfoundation.org/page.asp?menu=1&item=2&file=documents/doc_006.htm
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so as with any treatment for some it works and is necessary,..for others not so much,...
I suspect this disorder is going to mean a lot of trial and errors for all of us,...and some of those treatments are going to hurt, I dare say, but pain just like this disorder varries for all of us,..what might be agonizing to me may be nothing more than an irritant to someone else,...
however,...even if the treatment does hurt,...I look at it in the same way as Dentistry,...
sure it hurts to get a tooth pulled,....but keeping it in is going to hurt more,..and for a lot longer,....
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the above site also lets you sign up for regular updates in research, and development,....in the management of many other diseases as well as Fibro,...this I think is helpfull because as I discovered and is certainly applicable to me ,....many of us have other conditions that exaserbate the fibro,.....like IBS,...Hypothyroidism,..etc
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| Fibromyalgia
Posted: 4/12/2006 2:49:39 PM | Soft,
I have it too among many other things that cause the same symptoms. I do take OTC meds and a mild narc at times. I can tell you I could hardly use my right arm for almost three years before they FINALLY desiced I needed shots. I still feel like thers something else going on in there but I'm typing again. At least some. Don't be affraid of the shots. It WILL help. My first shot worked for years. These last few have been better for months. MONTHS are not short when it comes to everyday pain. It's worth a try. | |
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| Fibromyalgia
Posted: 4/13/2006 1:23:47 AM | i am looking at about two years worth of posts here re "fibromyalgia". so, i would like to add a little bit of info as well. take what you want and leave the rest:
1) fibromyalgia is a description of many symptoms that group together a la "syndrome". nonetheless it needs to be addressed as just that. if you had a stomach ache wouldn't you want to know if it was gas or cancer? well the same goes for a syndrome. so, what causes it?
2) there is a lot of overlap in diagnosis with fibro, chronic fatigue, gulf war syndrome, hashimoto thyroiditis and often with ms, als, lupis and other autoimmune disorders. often a person will get more than one of these diagnoses. 3) many people are given steroids which can be absolutely devastating IF, in fact, your fibro is caused by lyme disease or one of the other tick co-infections such as babesia , ehrlichioses, et al. only recently has a form of micoplasma which is a contributing factor of gulf war syndrome been also linked to the tick as a carrier.
3) most doctors are totally ignorant about lyme disease, most tests are not sensitive to detecting it and many hmo tests are cheap and will show negative results as this is a highly sophisticated little spirochete that scientists have documented to avoid detection in many ways. after a prolonged time it leaves the blood stream, has many forms that hide and often enters heart and brain tissue undetected. sometimes spinal taps are needed, but less painful approaches require spec scans and then again, only "lyme literate" doctors and practitioners understand the selection, administration and interpetation of these findings. for example the babesia test was until only a couple of years ago limited to the east coast strain. only recently was a west coast strain discovered and those testing negative until that point, suddenly tested postive.
4)further most chronic, long term lyme sufferers require very long term doses of antibiotics which the average doc knows nothing about or is afraid to treat for fear of retaliation from his group practice peers and insurors who need to keep the costs down. advocates currently are passing legislation in the US, state by state, to curb this attack on lyme literate physicians.
5) children are severely affected by lymes. in my own neighborhood a young teen tri-atheloner was diagnosed with lupis and confined to a wheel chair. fortunately her coach knew me and she went to a lymes literate doctor. she now walks, but still copes with cognitive issues and will be on antibiotics a long while.
6) many lymes patients develop allergies and chemical insensitivies and share a number of strange symptoms, some of which come from the lymes, some from the coinfections and some from the required meds themselves. also for some, the immune system breaks down and other viruses , bacteria, fungal infections can invade.
7)for some, there are psychiatric like symptoms ranging from secondary depression and anxiety about the illness to actual psychotic behavior. research by brian fallon at nyc columbia university is addressing this as well as long term antibiotic use and is funded by the nih.
8) the good new is that there is hope for this, but you need to get educated and be willing to make your own decisions. sometimes you need to pay for the tests and treatment or get involved with the advocacy groups so you can get help. the longer you wait, the worse it gets. my good friend and her little girl after six years are symptom free but still take antibiotics. my other friend just had a baby which many said was impossible. she had the umbilical cord tested and the infant is lymes free.
anyone wanting more info after searching the web for the more appropriate references, can fell free to contact me and i can forward to more appropriate references. i wasn't prepared enough to bring them to this particular response as i didn't expect to see the posts, but with a little preparation, i hope to be of any assistance if needed.
i might add that in my "past life" i researched and addressed a lot of health issues and i can only see that natural remedies only go so far. if you had cancer or AID or syphilis would you only use natural remedies? no. but that's not to say they don't assist in rebuilding immunity.
good luck to all of you and i hope you find this post.
namaste. | |
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| Fibromyalgia
Posted: 4/14/2006 5:11:37 AM | One thing that reassured me of the fact that I have a good doctor is what she told me at my last meeting with her,...that being,...for a long time we were looking for something to find,..
Now we are looking for something not to find,...by that she said having made this diagnosis,..we have to have you tested to make shure that it's nothing else but this,...
So the list you mentioned above has to be ruled out and since many of those on the list already are,...ruled out I mean,...we are working throught the remaining list of possibillities,..
Although many of us live in a part of the world where some of those things are as rare as hen's teeth,...ie lime disease,...in as much as the carrier of this is a tick ,...
the truth is we are a global comunity,...and we do tend to take our pets with us far more than ever before,(they no longer need to be isolated for 6 months,...a simple set of needles and they are good to go)..I myself spent 6 months living with my dog in mexico only last year,...god knows what I picked off of him nightly and what might have escaped my notice,...
and I too was bitten by things that made me very ill,...but I went to mexico with most of the problems I have today,....this however doesn't mean I may not inadvertently have brought something unexpected back for someone else,...
checking,...just in case,..is never a bad thing,...and checking a whole bunsh of things,...even better,..because you never know,....until it's been confirmed,...either in the positive,..or sometimes by exclusion,.... | |
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| Fibromyalgia
Posted: 4/14/2006 12:43:38 PM | I just got diagnosed with fibro. What can you do to help the aches and pains and get a good nites sleep?
~beach | |
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| Fibromyalgia
Posted: 4/14/2006 1:06:05 PM | well that depends on what your particular diagnosis and syptoms are but if you have been diagnosed I suspect the doctor that made the diagnosis would be the one to go to for meds and treastment options but if you don't get satisfaction there check out some of the sites I and others quoted in earlier posts,..lots of good help there,...
mine has started my on anti depressants which also help in getting the much needed sleep I,...and there are many different ones for them to try,...
problem is after the diagnosis comes a long time of trial and error with what works for every individual,...and what doesn't,....and in that way the cure is as variable and different as the disorder and it's signs and symptoms,....sorry but that's it I'm afraid,... | |
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| Fibromyalgia
Posted: 4/25/2006 11:28:08 PM | Turns out,...serenitycw,..that lyme diseade is as difficult to diagnose as fibro is and actually you were very right fibro can be caused by lyme disease,....
I did look into it and pertaining to me it's actually reasonable for my doctor to rule me in/out in this case because I spent 6 months living in Puerto Vallarta,....with 2 dogs,...whom I nightly had to de-tick,...and every time I had a shower I had to check myself for moled and freckles that moved,...those suckers can be sooooo tiny,...anyhoo turns out Puerto Vallarta is a known area for not only a tick problem but for lyme disease,....
and as luck would have it,..my doctor is in a multy physician office and one of her collegues, had the oportunity to have a patient with this disease,...it took them over 2 years to diagnose,....and after many useless tests found the one that told them what the problem was,....
Even a spinal tap which is often used to diagnose according to the informational site on lyme disease,....is accurale only about 20% of the time,.....so it helps for them to know what tests NOT to send you on too,....
so thanks for the info,..serenitycw,..and I'll keep you posted one way or the other,.... | |
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| Fibromyalgia
Posted: 4/26/2006 3:25:21 AM | | tell her to talk to her doctor about getting started on meridia.... its a weight lose drug but does wonders for fibromyalia. | |
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| Fibromyalgia
Posted: 4/26/2006 2:52:10 PM | first,..who is the "HER" you are referring to???
and what exactly is this (meridia) drug for and what does it do?
you have to be carefull when recomending drugs to anyone,....because every fibro patient suffers differently and has different signs and symptoms,...and there is no one drug panasea as I understand it,...to cure all,.....
this is not to say any one drug or treatment should be excluded off hand but neither should it or anyother drug be used without the direction of your physicians especially since I as well as others (I assume) are taking a variety of drugs already and no one really knows what the interaction of what meds can create,...
nothing in "my opinion only",...should be done on our own without discussing it with our primarry care giver first,....it's only prudent,....and safer,.... | |
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| Fibromyalgia
Posted: 4/27/2006 7:32:07 AM | | Great information on fibermyalga i have sufferd with it for close to 10 years now i have tryed just about everything finally i just gave up took advil for pain.This didn't help very much tho.Sleeping is pretty much out of the question tried sleeping pills but nothing worked because you system just got use to it.I have all the tender points and here in cape breton its very damp at times so pain is worse .However i never let the pain once stop me from walking or anything i do not use white flour nor do i use sugar there are days i can hardly walk ive been a personal care worker for the last 9 years.I have found that glucosamine sulfate helps very much doesnt take pain away much but without it my pain is worse.Anyway i ended up getting arthritis in my hip from a fall i had many years ago ive had 2 shots and nothing can hardly make it up the staris most days.Ive had to go on a mild pain killer and that does not help takes the edge off a bit.So does anyone have any suggestions on what i could do to help lessen the pain.My fibermyalga was inhearted btw and i pray my daughter does not get it.So any help with this pain in hip would be greatly appecated. | |
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| Fibromyalgia
Posted: 4/27/2006 8:11:12 AM | there are of course the standard pain meds,...that go from regular over the counter tylenols to T-3's and even T-4's and then there is demerol and well a whole bunsh of them,...but
My doctor has me on the waiting list for the Pain clinic and since you are Cape Breton,..you too can be sent to the VG hospital here in halifax for it,..there is a long waiting list but better than nothing and,...
My doctor has made arangements for me to get my own tens mashine,....
if you have ever been to phisio,...which I suspect most of us have been then you know how much help tens mashines can be in cutting off the pain message to the brain,....and no adverse side effects,....
I don't know if your doctor has you on anti depressants,..which I see on most sights is the first thing they put you on,....as mine did me and it does help me sleep,...still not the whole night through,..but as many as 3-4 hrs at a time,...which is pretty darn good for me,...
also I went out and got myself one of those pads you can get from Can tire or several different stores,....that are the torso length,..heating/message pads ,...they can help too,...
you can also get information on bio feedback and self hypnosis,...(either through your doctor,...or a physio clinic or the library,...or just google it)...
http://www.medicomm.net/Consumer%20Site/am/bio.htm
http://www.futurehealth.org/BFfaq.htm
http://www.bcx.net/hypnosis/induct.htm
http://www.hypnosisdownloads.com/
you might even try accupuncture or accupressure,...
all of these may help you help yourself,......at least they can't hurt you anymore than you already do,...
this particular page will get you to a hypnotherapy page exclusively for hip pain
http://www.hypnosisdownloads.com/downloads/pain-relief/hip.html
I just love the computer,...with just a mouseclick anything you need is right there,...including support from the many nice people here,....to which I say thanks,.... | |
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| Fibromyalgia
Posted: 4/27/2006 8:33:13 AM | http://wendi.com/html/free_scripts-mp3s.html?type=GoogleAdWordsContent&gclid=CLrrvOGzzYQCFR6ISAodMCXkLw
this site is a site for self hypnosis,..one that helps you without having to buy any tapes,..because if you follow the script on this page you should be able to do it,....
maybe not the first time or even the second but eventually,...
good luck,... | |
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| Fibromyalgia
Posted: 6/7/2006 11:17:24 AM | two visits to my regular doc and a specialist in the past two days, kenalog shots both times.
pain sucks. | |
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YogiZ
| | Joined: 2/23/2006
Msg: 48 | |
| Fibromyalgia
Posted: 6/7/2006 11:57:36 AM | Someone I know has this horrid illness. It's nothing short of heartbreaking to witness the pain they experience.
There are support networks out there though. The 'Net has a wealth of info and websites that you can find with a simple Google search.
Good luck to your friend. She's lucky to have someone like you in their life man. :) | |
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| Fibromyalgia
Posted: 6/12/2006 6:00:25 PM |
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?
My heart broke when I read this post. Sadly, the first part describes my mom. She was eventually diagnosed after over ten years of pain. Sadly the diagnosis came the day after her funeral. 
I seen what it did to my mom. And I'd love to say that my mom didn't more than one do stupid things, all to just get rid of the pain.
NO ONE in their right mind would make that kind of pain up, NO ONE. I seen the pills that woman would consume. There is no one who would put themselves through that kind of torture. She had IBS herself. And as a result was totally dependent on laxatives the last ten years of her life.
She couldn't eat anything without it bothering her. Nothing.
She couldn't walk anywhere. No where.
She was always in pain. Just everywhere.
I honestly didn't read all of the responses...couldn't. But felt compelled to reply. If for anything, it's to beg, not to give up the fight. There HAS to be something out there, some doctor who will listen. And do NOT give up. You are NOT crazy. You have the pain.
My mother had other issues in her life, it wasn't totally the pain that took her young life from her. She had her fair share of health problems. Depression, high blood pressure, anxiety, and fibromyalgia. Plus she had some emotional issues going on and she had lost her husband suddenly the year before.
I think it's great that you're all getting help and talking about it. No one but yourselves truly knows what you are going through. And I know that can cause a lot of lonliness and that a lot of people don't understand.
But the more awareness that is brought to it, the more sufferers that come out. And the more people come out, the more there becomes a need for further research. | |
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| Fibromyalgia
Posted: 6/12/2006 7:27:26 PM | such a bittersweet and heartfelt post above mine, here. thanks for so thoroughly understanding so much because of the love you shared with your mother!
(i lost mine last year on st patty's day, and still a bit raw over having lost her though she had lived a full and long life, i still miss her every day.)
the steroid shots and just 2 doses of flexeril pulled me out of the awful burning flare i had for the past few weeks, so i am grateful for that. the damn flares sure do kick my ass when they arrive, each time i am still suprised at their velocity and strength, even after being diagnosed fifteen years ago. the above poster IS right about everyone maintaining the most positive outlook possible, yes, sometimes kinda tough; especially in the midst of a flare. the diagnosis is such a strange one, acting so insiduosly in so many different ways, but it ISN'T a death sentence.
i'll never forget a doctor from the past who said to me, "the bad news is you have a painful condition named fibromyalgia and sometimes it may feel like it's killing you; defeating you; but the good news is it ISN'T." please remember this. | |
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