Fibromyalgia

[LibertyChic]

don't be sorry, the ama buried the remedies for a lot of ailments since about 1910/20.
too many people have been healed of fibro, and other diseases also
to say it is not possible. some after a few weeks, some after decades with a medical file inches thick.
if you trust the ama, fine, go ahead, that's your choice,
but i learned with 1,000,000 others not to; including the licensed ama doctors 100,000 strong in the NHF in the usa.

while in medical school, which i completed in the 80's, then worked in pharmacy 3 years, i learned how the system works.
in the usa, they (in the system) will not and are not allowed to tell you the truth. period.

still, a lot of people don't know this - they either find out on their own or from someone else, or they don't ever find out or admit it.

enough posts are in the christianforums by dozens if not hundreds of members about this to verify it for now. then follow up at at a book store or on the internet.
don't take anyone's word for it - verify everything with prayer and testing, possibly a lot of reading (outside of approved ama material).

it certainly helps if you find people who have been healed that were
given up and supposed to die, like pastor josephson.
pastor josephson was given 6 months to live by several standard licensed doctors.
a year later he was healed of his terminal illness
and finally did die --- 60 years later !!!
his book "God's Key to Health and Happiness" is readily available on the internet
and explains why doctors aren't able to do what they're supposed to do, including "first of all, do no harm".

there are hundreds of books and medical publications, a lot you can read for free, that verify every bit of this over and over again.

Well, since this isn't a debate forum, I'll simply say, "Thanks" and leave it at that.

 

[AdeliaGreen]

If all I had to do was figure out what allergies I had and be done with all these issues, that would be great. I'm currently on detox, mostly raw foods plus poultry. I have been re-introducing foods into my diet and so far I haven't had any reaction to them. Also, scratch tests for allergies and stuff like that don't work for me as I also have dermographism and my skin will swell up and go red no matter what is on my skin when I am scratched or pricked.

All of those who suffer with fibromyalgia jsut have to find out what works for them and do their best to avoid things that cause flare ups. I'm just thankful that I do have good days. There are those who are less fortunate.

 

[TiaLola]

I just wanted to say that my father suffers from Fibromyalgia, and I wish the best for all of you. It's a very difficult disease to cope with, and I wish you all the best. I will keep you in my thoughts and prayers.
<3

 

[LibertyChic]

Thank you Tia.

 

[allieisme]

I would say yes to testing and actually being diagnosed. In all probability you are familiar with the symptoms of fibro but what if it were something else? I have self diagnosed myself from time to time and often I was wr ong.

There is no actual tests for fibromyalgia.. They simply rule everything else out.

 

[BigToe]

So how does one know they have it for certain? What are some treatments one can ask their doctors about for relief? My sister has been told she has it, from a doctor, but has since moved. I'm worried she is resigned to not getting better being the same as not being able to have relief.

 

[chris777]

So how does one know they have it for certain? What are some treatments one can ask their doctors about for relief? My sister has been told she has it, from a doctor, but has since moved. I'm worried she is resigned to not getting better being the same as not being able to have relief.

I am about to be there myself.
as for certainty there is no certainty, as the whole dx is from them NOT knowing whats wrong.
And dont even get into looking into coexisting conditions, lol.

I can say this, If one can function wo meds do it.
I am crippled by medication, and at the point of disability,
If I had allowed myself to be terminated by my employer. rather than Try to keep up with their demands, I would likel ybe in much better shape.
Not to mention how doctors are so terrified of causing addiction, that one will never likely get relief.

 

[BigNorsk]

Well fibromyalgia isn't just a garbage diagnosis but it does seem like that sometimes. Diagnosis relies on history of symptoms plus the testing of tender points. While the elevated levels of substance P would point to the possibility of diagnostic testing, at this time, no standard laboratory test can show fibromyalgia.

There are many problems with how many physicians diagnose fibromyalgia, one such problem is if they find something, anything else, it is common to ignore that the patient also has fibromyalgia.

In any case, rheumatologists are generally the best at diagnosing. If you have a local fibromyalgia support group, I would recommend contacting them and getting a recommendation as to a doctor or doctors in your area who are skilled in it's diagnosis.

There are reasons why a diagnosis is useful. One is that many if not most fibromyalgia sufferers have horrible sleep. Even if you do not treat your pain, it is likely that you can receive help which results in better rest and that can have a significant affect on your life. Even if you are not that concerned about getting your fibro diagnosed, a workup at a sleep clinic can be very worthwhile.

Another reason is that I would think you, as a woman would certainly want to try Cymbalta, it is reported that half of women suffering from fibromyalgia have a significant improvement of symptoms with the use of Cymbalta, without regard to whether or not they suffer from depresssion. Certainly worth a try. Interestingly, the drug does not seem to help men, other than it does function as an antidepressant.

And that brings up depression. Many fibro sufferers are also depressed. And even if other symptoms are not alway amenable to treatment, often depression can indeed be much improved.

So many reasons indeed. Note that most of them aren't so much fibro oriented as symptom oriented and so you can treat symptoms whether or not you are diagnosed with fibro. Normal treatment can vary a bit depending on whether or not you have fibro though. Probably most of all for sleep problems. If you go to the average doctor and say you have sleep problems, you will probably get some sort of "sleeping pill", these tend actually to be counterproductive for fibro sufferers since most of them tend to make your sleep more shallow, which is already the problem for the person with fibro. With fibro usually something is done to increase seritonin levels and produce deep sleep.

It's up to you, but I would recommend at least working on the symptoms. There is such a variation that it's almost impossible to know how you will react. Like I said above, the 50-50 chance that Cymbalta would significantly help you seems to me to be worth a shot.

Marv

 

[david01]

I spent seven months and a huge amount of money (I did not have health insurance at the time) getting diagnosed and being told I was in perfect health. I went to Mayo Clinic three times. The third time one doctor sneered at me and said, "Nobody ever died of pain. Just go home and get over it." Another doctor there smiled at me and said, "Well, at least we know what's not wrong with you and you should be happy with that." The pain got worse and worse. I was diagnosed with the doctor's fallback illness - depression. Shortly after that I saw a psychologist who told me first off that my pain was real, physical, genuine pain and was not pschosomatic or the result of depression. Shortly after that I developed the classic trigger points of fibromyalgia. I am doing better now that I am finally being treated. I would definitly skip the whole scene of testing if I could do it over again. If you have the trigger points and the other classic symptoms (moving pain in your body and insomnia) and if you respond to treatment for the pain and insomnia, then I would go from there and forget any other testing. My problem was that for months and months my doctor limited me to Tylenol and ibuprofin, neither of which did a thing for my pain. So, I hope this helps you. Also, for the lady who is trying to get disability, Fibromyalgia Network has a good forum and one of the threads tells you how to get disability. You might look it up. I hope this helps you folks.

 

[LadyOfMystery]

Hii..How is everyone doing with their Fibromyalgia? Find any new pains? lol
Lately I've been exercising for the first time in quite awhile and I've noticed some pains that I've never had before. It hurts more to exercise than it does to not exercise. It's really actually discouraging because I want to lose weight, but it's a chore to even exercise because it's a lot of pain. Also, it varies from day to day. One day you're fine! You get through your exercising, not a lot of pain, and you're doing good. The next day, you're doubled over in pain and can hardly even get through the first 5 minutes of the warm up. It's so frustrating. Anyone know how that is?

 

[Marvin123]

Similar symptoms between restless leg syndrome and fibromyalgia:

Both the syndromes are characterized by uncomfortable sensations in the limbs. In restless leg syndrome, you feel often the urge to move the legs while in fibromyalgia, you feel fatigue or pain in the muscles or joints.

Both syndromes tend to have disrupting sleep patterns, though troubled sleep seems to be the problem with those suffering from restless leg syndrome and fibromyalgia sufferers tend to have problems maintaining REM sleep due to periods of brain activity through the night.

Marvin.

 

[Lost]

Thank you for the bump. This is a helpful thread.

 

[AdeliaGreen]

Hey everyone It's been a long time since I posted in here. About a year and 1/2 actually. I got pregnant in December '06 and we welcomed our baby girl into the world in September of '07. I noticed a decrease in symptoms during my pregnancy. I've discovered that this happens quite often with fibromyalgia sufferers. This leads to me ask if there's something hormonal about fibromyalgia? Has anyone else had a similar situation? My daughter is almost 9 mths old now and this past month I've noticed my fibromyalgia pain is getting worse than it was before. I'm also noticing new sore spots. I've decided to go back to a naturopathic doctor and stick with it this time. How's everyone else doing?

 

[Merlin]

Hi.
Congrats on the new addition.


What you are describing is a change in symptoms.
Of course the pain lessons.
Could you imagine the pain of stretching out your body for 9 mo. of pregnancy?
There is natural anesthesia during that time.

 

[BigNorsk]

Some women feel much better during pregnancy, some worse. I've wondered if the hormones produced either by the woman or the child could have something to do with it but haven't found research linking symptoms during pregnancy to the sex of the child.

It's difficult to tell how much hormones are directly involved. A fair number of the men with severe symptoms have relatively low testosterone levels and are sometimes helped with hormone therapy. Part of it may be that they tend not to exercise and such which can affect hormone levels.

I'm not as familiar with the effects of exercise and such on women's hormone levels but I would suspect that would have some effect. Could be a partial reason why exercise is so important for a fibro sufferer to do relatively well.

Marv

 

[Dr. Holly]

I was diagnosed over 10 years ago and at the time of that diagnosis, they found that I had been suffering from Fibro and CFS most of my life. I had been (and still get referred) to so many doctors that I've lost count. However, it is worth it in my opinion. I'd say the most important thing is to go to a specialist, not fool with general practitioners that give you the run-around and wind up doing more damage than they help. I'm not saying all GP's are the same but I've found most to be totally inadequate. No matter what - you just need a doctor that truly listens to you and doesn't disregard what you say because they don't have the knowledge to deal with it. I'm not sure where you live, but there are clinics called "The Fibro & Fatigue Centers of America." Dr. Jacob Teitelbaum is the leading authority on these conditions and knows what it's like because he actually had them and has now been in remission for many years. He is the medical director of these clinics so that doctors who have dedicated their lives to helping people with these syndromes have a place to make a difference. Dr. Teitelbaum also has a book called "From Fatigued to Fantastic" and it's wonderful in my opinion! I have learned so much, from the natural supplements to take and the prescription medications to speak with your doctor about. It is a lot about trial and error because 1 method doesn't work for everyone who tries it. It does take time to see what you'll respond to.

Here's the link to those clinics to see if you can possibly get to one if interested:

http://www.fibroandfatigue.com/

You'll be in my prayers. I sincerely hope you feel better soon & get the help that you need in the near future. God bless you sister!

Hello,

after doing a lot of research and having a mother with fibromyalgia....I believe I might be suffering from the same it too......my question for you is.....is it worth going tohough a lot of testing and possible misdiagnoses and everything else that going to a doctor involves.....if there is nothing that can be done for you other then treat the symptoms......if you have this and were properly diagnosed....would you have gone through the diagnotstic proscess again?

Thank you for your guidance and in put
Roxanna

 

[green wolverine]

I've had fibro for 27 years now

 

[renewedfaith]

I am pretty sure i have a milder form of this,and have had it at least 15yrs. Today I'm having the migratory pain, and burning sensations. The funny thing is, the two times that i notice flares up is when I'm stressed or when i eat really healthy. I mean like barely any mean,and fat, etc. I just came across an article about a woman who said that when she was at her lowest weight due to dieting, that's when she felt the worse. I had a wheat bagel for brkfst this morning, and when she said that wheat makes her symptoms worse, i had a lightbulb moment. Actually, wheat/gluten has been proven to make it worse. I am going to start keeping track of what i eat the days i flare up.

 

[hopeinGod]

I have been experiencing all the many symptoms I have found on various websites that describe fibromyalgia and CFS (chronic fatigue syndrome). Digestive problems, fatigue, burning/stinging, freqent urinating, TMJ, tinnitus, headaches, some difficulty sleeping, itchy hands, climate discomfort, noise and temperature sensitivities, skin discoloration, and more.
For three years, I've been seeing a pain specialist who has me on Lyrica and xanax, but he refuses to conclude I have fibro. A rheumatologist I saw months ago sent the results of tests to my pain dr. and I'm not able to get them over the phone, but have to drive to the office for a copy of the results. Since I am a vet, I also have my VA dr. helping me with diagnosis.

There is a program called the "Guaifenesin Protocol" that uses guaifenesin at doses of no lower than 600 mg. daily, the stuff that's in Mucinex, to flush out phosphates in one's body, but it is a strict regimen as the person has to stay away from any products that contain salisylates as they block the clearing of phosphates. Also, carb consumption and hypglycemia are big concerns. I tried the protocol, but because I have ETD (Eustachian tube dysfunction) and tinnitus, it didn't work for me, but instead increased the ringing so loud that I was about to take the bridge.

So, now I just take xanax and Lyrica (only 50 mg. a few times a week as it too causes the ringing to increase). It is one day at a time for me. Hopefully something will come down the pike to be more helpful. No more standing in prayer lines for me, sorry. Been there, done that.

Dave