Fibromyalgia
Does anybody know anything about Fibromyalgia? Treatments? Doctors? Meds? Just got diagnosed with it. Looking for some input of how your dealing with it.
DJB Please confirm that you don't have Lyme Disease. "Fibromyalgia" is a "disease" that doctors admit do not know it's genesis.
I would venture a guess that over 50% of individuals that have been diagnosed as having "Fibromyalgia", are actually infected with the Lyme bacteria and a host of co-infections.
Have your blood checked by a Lyme literate lab, the standard tests for Lyme are virtually useless.
Restaurant Ralph Am familiar with one case that would not diminish and drugs had very little effect. Such a brave person to live with this ---- a puff of breeze provided excruciating pain.
Tried many DRs, found no relief. Sorry.
strangerdanger IMO Fibromyalgia is a made up term for when doctors have no clue as to what is causing pain/symptoms.
Calico696 Fibromyalgia is NOT a "made-up term"; altho knowledge about the condition is still in it's infancy. It's a real thing, and could have many connections, since symptoms are so similar to other things such as lyme and epstein-barr.
There is not "test" for fibromyalgia, but that just means they don't know what causes it, it doesn't mean it doesn't exist.
I agree with the above poster re: lyme. It's my understanding there are only 2 labs in the country the "advanced" lyme testing, you have to find someone who works with those labs.
I am getting this testing soon, through Northwest New Jersey Wellness Center.
http://www.thewellnesscenternwj.com
JeffersonRepub Multiple Doctors, Nurses and health care professionals I’ve spoken with claim it is nothing more than a scam perpetuated to benefit the pharmaceutical industry.
Stymie I had all the Lyme tests done all negative, Spinal tap for MS was negative, MRI was negative, biopsy on thyroid nodule negative, Lupus ruled out, RA ruled out. EMG was negative, But neuropathy was positive, Your right fibromyalgia is dx when it can’t be figured out. Was going to go for a second opinion. But the tests results are the results,
There’s so many links, out there. I could see one going mad, trying to sift through all of it, dividing sponsored content and fact. A person, I know, having fibromyalgia, said that even certain light touches makes her see stars. She said it’s a nerve pain condition, but I thought ALL pain was nerve pain. She said Lyrica helps somewhat, but without insurance it would’ve cost $1400 per month. She pays a $100 co pay, still too high (IMHO).
I’m sorry to hear about your diagnosis, DJB. I hope you can receive the proper comfort care, as the search for a cure, continues.
Guilty-Remnant People with fibromyalgia are deficient in magnesium and malic acid. There is loads of malic acid in apples. I eat applesauce from Donaldsons with my vitamins every day. Apples really help the symptoms. Google ...foods to eat/foods to stay away from. Lots to read over the internet. Your doctor should give you literature himself for you to read. Ive had fibromyalgia for many years. I do not make a big deal about it nor do I dwell on it. Best wishes to you. Do your research and shine on!
Angela Fibro: fibers, fibrous tissue
Myalgia: Pain in muscles
A diagnosis of fybromyalgia means the doctor agrees you have pain, but doesn't know what causes it or what specifically to do about it. Basically, Calico is correct.
I agree, go to a Lyme doctor. Not any doctor that will send you for a standard lyme test. Rule it out. Good luck!
maja2 DJB
I don't know if my Dad donated the rather thick (1+) inches book I had on Fibromyalgia yet. If he didn't, I'll be glad to give it to you in a week or two. I know it's not the latest info, but it provides a good overview of everything.
Fibromyalgia is normally diagnosed when no other disease fits the bill and you meet certain criteria, such as the continual tiredness and hypersensitivity to touch, etc. Normally you have to have pain when certain trigger points are touched, or at least 4 of 6 or something like that.
One thing I would ask though is whether or not you've been tested for Gluten Intolerance or Gluten Sensitivity (they're not the same btw). While I tested highly positive for the Gliadin antibody via blood test, the actual sample of the intestinal villi was inconclusive, so I'm sensitive, but not Intolerant. In other words it will cause me pain and neurological issues to some extent, but it won't kill me, which true intolerance can do over time, due mainly to malabsorption of nutrients.
Like Lyme disease, it mimics many other diseases and causes numerous odd symptoms. Unless you have the simple blood test to at least screen for it and rule it out, then it could continue to play havoc with your body, including neurological effects and tireness, all of which I had.
If you need a second opinion, I'd recommend Dr. Pare in Roxbury at 66 Sunset Strip, near the theater. She's really good, at least imho.
Many people find that beginning an exercise program, though it's hard to start and keep with, is a key to relieving the depression that often accompanies it, as well as the tiredness and muscle/joint pain issues. Good luck!
Phil D. I was diagnosed with Fibromyalgia when I was 16. I am almost 43. I have never taken meds for it other than OTC. Its rough bc it does come with a whole host of other effects to your body aside from muscle/nerve pain, but the most important thing you must remember is, fibro is a part of your life, but your life is not your fibro! Stay active, massage and acupuncture help too. Also it's important to remember that every person's body is different and fibro may affect you in a different way than another. It's just important to remember that YOU ARE OK! #fibrowarrior
Weebiekins My Fibromyalgia is treated with Cymbalta. This medication is usually prescribed as a anti-depressant, but have side effects that help easy the pain. I have been on the medication for 12 years now and very rarely will I have a flare-up. The only time I did not take the medication is when I was pregnant with my children. I did try Lyrica, but all that did for me was make me gain weight.
NJMOM"Multiple Doctors, Nurses and health care professionals I’ve spoken with claim it is nothing more than a scam perpetuated to benefit the pharmaceutical industry."
That's interesting, since there are no drugs to treat fibromyalgia specifically... they prescribe antidepressants, nerve blockers, muscle relaxers, analgesics .... all treating the SYMPTOM but not the cause.
Anyone who lives with fibromyalgia, or chronic myofascial pain syndrome, can assure you it's not a "scam". Again, JUST BECAUSE THE DOCTORS DON'T KNOW WHAT CAUSES IT DOES NOT MEAN IT DOES NOT EXIST. The only "scam" is rX-ing drugs that don't really address the issue.
It means they have no idea. Yet.
Doctors don't know what causes cluster headaches either, but I can ASSURE you they DO exist.
https://www.medicalnewstoday.com/articles/315721.php
I use daily prednisone lexapro and plaquenil to treat my sjogrens and fibromyalgia. It’s a bit of an autoimmune cocktail I guess. To Jefferson’s point it does just seem to treat the cause but rather the symptoms. There is a whole lot about auto immune disorders that humanity needs to get a grip on. Nobody has real answers yet as we do in other things like aids.
Electron Ursa I have been treated for Fibromyalgia for around 15 years... Not a scam , not fake!!! The pain is REAL... I’ve tried all the medications out there..Some work better than others.. Lyrica works... But it has a lot of side effects.. Most of them do.. I choose not to take them , because of the side effects.. Some days the pain is worse than others... I just take alieve or any over the counter meds...
Havaclue So JeffRep- is this one of the UNUSUAL cases when modern medicine is doing right by the general public?
Referring to your prior posts.
In this case I’ll stand by unsolicited statements from health care professionals I am associated with that claim it is merely an excuse to dispense narcotics
I was diagnosed with fibromyalgia many years ago. I was advised by a doctor friend that many fibromyalgia sufferers were actually deficient in Vitamin D. So I started taking 1000 IU of D3 supplements a day. Most of my pain went away. Just a thought. Might not work for everyone.
Lonesome Dove "So JeffRep- is this one of the UNUSUAL cases when modern medicine is doing right by the general public?"
Pardon? You'll have to be more specific... denying fibromyalgia is NOT "doing right" by the public...
"In this case I’ll stand by unsolicited statements from health care professionals I am associated with that claim it is merely an excuse to dispense narcotics"
And you (and they) can be wrong, which is something you should be used to by now ;)
You may have lyme,
In hackettstown my younger son, nephew niece had positive to lyme and show only one band , even thought did not show all the bands and primary doctors did not want to do anything about it, we found doctor at PA they got treatment and now they are doing great.
My sister got detected late and suffered so much for few years until months ago she used kids Doctor and she is doing much better.
I had so much pain on my spine and inside my body I had so many test done and I asked my doctor to do lyme test, he denied bc he said ( he is the Doctor and he knows what he is doing)
I used my mom’s doctor and got positive for lyme all the bands were positive got medicine and with in 2 days I was feeling amazing..
My older son got babesiosis and with medicine is doing good!
I hope you find the cure for your pains
Send you a hug
Irma Avoid Gluten (wheat/rye/oats/barley) and ALL milk products, including cheese.
Buy the book, "The Yeast Connection".
Go to a natural healing doctor. around here, there is one on the side-road near Walmart near Donaldson Farms.
Hackresident Irma,
If you don't mind my asking, what medication did you take for the lyme?
"what medication did you take for the lyme?"
AFAIK, doxycycline is the antibiotic typically prescribed to treat Lyme...
ianimal yeah, familiar with antibiotic treatment, that's why I asked... if it was something else/new, I want to know what it is!
I'm getting the advanced lyme test in 2 weeks.
I have been tested for Lyme 3 times since my diagnosis and I have no bands.
In this case I’ll stand by unsolicited statements from health care professionals I am associated with that claim it is merely an excuse to dispense narcotics ~ Stymie
What about the people who don't and never have taken narcotics or been prescribed any pills by their doctor? I know several people who just keep living their lives without narcotics and find other ways to deal with the pains and other fun things associated to this syndrome. I would say live one day in my body and tell me that my fibro isn't real, but I wouldn't want that for you. I don't want to live with it, but it is the hand I was dealt. I would never choose to wish it on anyone else.
Lonesome Dove has a point. I also have a Vitamin D deficiency and I take 3000 unit of Vitamin D a day. I have a double edge sword. I have a Vitamin D deficiency, but can't be out in the sun a lot because I get skin cancer. Go figure!
Did you get the Western Blot Test for Lyme Disease? That used to be the best, assume it still is (?).
Fibromyalgia is what they call it these days. It used to be called hypochondria.
Quack, Quack- That is not fair to say. Before I was diagnosed and placed on medication, I was in so much pain that I actually thought about killing myself. My feet and ankles were so swollen, I couldn't even wear shoes. It affected my job performance and I got let go. It is not a made up disease or people being hypochondriacs as you are claiming.
The western blot and ELISA tests are the "gold standard" amongst GPs. But it can very easily give a false positive OR negative.
The tests can be problematic. The ELISA and Western blot can only detect whether a person has been exposed to Bb. The tests cannot determine if there is an active infection which could be causing the persisting symptoms, since antibodies can be produced for months or years after an infection has cleared.
IDK what the newer, more accurate test is called. I just know that because it's newer insurance companies won't pay for it, and there is an additional test that goes with it that tests for other, different co-infections that are also tickborne.
This is from 2017, I'm guessing this must be referring to the new protocols.
https://www.sciencedaily.com/releases/2017/12/171207095001.htm
ru R u. Some treatment protocols might be misinformed or overly marketed. But fibromyalgia is not a scam. There is much more evidence for the existence of fibromyalgia than there is for the existence of catastrophic man made climate change.
https://www.mayoclinic.org/diseases-conditions/fibromyalgia/in-depth/fibromyalgia/art-20048097
Debbie Polson From my experience, fibromyalgia or whatever you name it, is real and sometimes there is little beneficial medicines or life-style changes that can be done. As in nothing works. I trust the Drs we had on this, they were well-respected in their fields. Many a strange malady they diagnosed and corrected in the past, but this one had them flummoxed for over a decade as to finding anything to dull the pain much less provide any curative value. Like I said, a puff of wind to the forehead caused excruciating pain. That's a life changer.
https://fedupwithfatigue.com/
fibromyalgia and lyme disease
and mostly, fibromyalgia connection to MOLD EXPOSURE (at home; at work).
"Scam - no medical test will reveal it."
Ignorance is not bliss. There's no specific test for lupus either... I guess it doesn't exist? Wake up.
QUACK QUACK!!! It’s mostly women who have Fibromyalgia.... Its real pain! Not a SCAM.. And also it’s women who. Have babies.. And go through the pain of child birth!!! So I respectfully take offense to your comments....So what I’m trying to tell you.. Is women know what real pain is!!!!!! Having Fibromyalgia is. Having real pain!!!
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