posted
Yesterday a pain specialist told, he thinks I have fibromyalgia. My first reaction was: �No way. Fibromyalgia is rheumatism, which I don�t have.�
when i came home and looked at the symptoms on wikipedia I was surprised: i have nearly all of them: fatigue, nerve pain, muscle twitching, bowel disturbances, chronic sleep disturbances, brainfog, paresthesias, sensitive to cold and noise. It also gets worse when I am stressed. And I was wrong: Fibromyalgia is no rheumatism or autoimmune disorder.
But: my trigger points were negative (no reaction), i have no swellings, am (obviously) no woman (90 % of fibro-patients) and what also makes me doubt: fibromyalgia seems to be no real disease but only a syndrome or name for a group of common neurological symptoms. There is no clear reason or therapy for this "disease".
So I am unsure. I had positive and negative westernblots, have had good (rocephin), bad (flagyl) and no (some other abx) reaction to certain antibiotics.
Have you taken fibromyalgia into account? Do you think there is a disease like fibromyalgia or is it just a word for doctors to label sick people?
Posts: 226 | From earth | Registered: Sep 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I have lyme induced fibromyalgia. This is not at all unusual in patients who were either inadequately treated for lyme or who have untreated lyme.
You asked: Do you think there is a disease like fibromyalgia or is it just a word for doctors to label sick people?
It is a group of symptoms for which I believe there can be a number of different causes.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Fibromyalgia is a made-up umbrella term with no cause - it's a groups of symptoms, a "syndrome"
I see that Terry was posting at the same time. For some, the term can be used to explain the pain, the deep tissue pain. Infection CAUSES pain patterns. It's easier to say and everyone knows what we mean. But it is not a precise medical diagnosis.
Bottom line, even when that term is used, the symptoms are often caused by undiagnosed lyme or other tick-borne or chronic stealth infection. Fibromyaglia is not the stopping point of a dx, Fibromyalgia is a set of symptoms.
If you have lyme, the pain, fatigue, hyperacusis, etc. are all connected to lyme. Lyme is often a chronic illness and, even with the best care, it take take years to achieve remission. Still, it is vital to keep addressing the infection(s) with some kinds of anti-infective therapy as well as nutritional support for the body.
If you are not satisfied with your progress, seek out a LLMD who may be better suited for your needs. Seek out better support, perhaps.
But, as you said you had positive Western Blot for lyme, please do not ignore the infection. Also of importance is assessing the full range of tick-borne and other chronic stealth infections as well as heavy metals, etc.
Are you gluten-free? Have you assessed heavy metals? Have you done detox methods to help your liver? Are you supporting your endocrine system/adrenals? Do you avoid all simple and processed foods? Avoid MSG and artificial sweeteners?
All this matters for any pain syndrome. But many pain specialists ignore the complex approach to support of the body so that infections can be best treated. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Steven, my case is very clear. I had a known tick bite on my foot. Ten weeks later, I got my first symptoms, stiff neck and sore shoulders.
A year and a half later, I had full-blown muscle pain that was declared to be fibrocitis, with the term changed to fibromyalgia in 1990.
I met in fibro support groups for years, trying everything for it. Nothing worked.
The many practitioners I saw included pain clinics and pain specialists. They were not trained at all about Lyme disease. And when I went back to tell them I came in with a Lyme diagnosis, they were not interested!
I'm wondering if the reason for that is financial, as in keeping everyone coming in to see them. Still, they could have a business treating what we really have.
In 2006 I was told I had Lyme. I bloodtested positive, went on antibiotics - for me, clindamycin 150mg every six hours - and a week later, no more fibromyalgia pain after 25 years of it. We're all different when it comes to our response to antibiotics and other treatments.
The symptoms you list are all Lyme symptoms. We all get to see what works. For me, for example, drinking mangosteen juice stops Lyme eye symptoms and keeps my intestines regular.
I suggest you study here what people are doing for remedies, and figure out what you might like to try. Also a good Lyme doctor and some testing can help a lot.
One more thing - when I got diagnosed with Lyme, I tried to find the people I had known in fibro support groups. Those I contacted had found out that they had Lyme and some had co-infections (babesia, bartonella, ehrlichia).
Posts: 13171 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You had positive Western Blot. I don't see that you need other lyme tests. Maybe tests for coinfections but the positive lyme test, with symptoms is very clear.
But, I see from your history that treatment has not been helpful - so questions about that might yield a redirected approach. Lyme is a very difficult infection to treat. It can take many years to achieve a remission.
Also, there can be structural issues with or without lyme. Have you been assessed for Arnold-Chiari malformation (neck, back of scull thing - just google the term)? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
LymeMD Blog: � of the way down: Wednesday, March 3, 2010
BABESIA, Babesiosis, blood parasites, malaria like organisms, piroplasms-protozoa: all refer to the same Lyme associated co-infection
===============================
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about: ----------
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link.
===============================
Anyone with Porphyria (a specific kind of enzyme/liver deficiency) also has be very careful about exposure to toxins in their environment - whether at home, in their car, at work or even during a shopping trip as new merchandise in stores has lots of chemical treatments. More about all that and what can help: -------
posted
I lost 10 years of working in the right direction because of a diagnosis called fibro, i was trying to heal but i had no real directions, so i was going in circles that wernt healing if anything caused just as many scars and this disease has caused.
Now i know what i have i have and idea of what to do , errr i think.... still u get what im saying.?
Still confused about the guifensisn protcal i gave up though. :?
Posts: 106 | From Wales, RI usa | Registered: Jun 2010
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Ditto the above posters.
Just a note - my fibromyalgia symptoms went away with Lyme treatment.
If you have a positive Western Blot, I think your path is clear.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i thought fibro WAS lyme....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
First ask yourself... What caused the Fibromyalgia? it is not a disease with a known cause...
So look to Lyme or some other infection. Since you had a positive test and a reaction to the meds, then you can pretty much bet that you have LYME as your cause of the "FM."
---IF there really is a disease called fibromyalgia.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
My rheum/pain doctor refused to diagnose me with fibro b/c I didn't have enough of the pressure points (even though my primary labeled me fibro).
The pressure points are how fibro is diagnosed. No points, no fibro.
Posts: 252 | From New York | Registered: Apr 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Fibromyalgia is a term that Dr's made up for a set of symptoms when Dr's were not able to figure out what is really wrong with the patient.
A patient thinks they have found their answer when given a diagnosis like this.
Nothing could be further from the truth.
Fibromyalgia is a symptom of a larger infectious picture.
I have had this symptom for 23 years and found out on my own in 2009 that the cause was Borrelia burgdorferi.
People given a Fibromyalgia diagnosis will often never find out the real cause of their illness because Rheumatologists will tell them there is no known cause and no known cure.
That does not even make any sense. Something caused it and you just have to find it.
Borrelia should be the first suspect, along with other tick-borne diseases, viruses,etc.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Agree with above posters it's an easy diagnosis and then they say here take pain pills or anti depressants for the rest of your life.
Posts: 805 | From Utopia | Registered: Feb 2006
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posted
At least greengirl's dr wouldn't give her the fibro diagnoses without points; my rheum dr told me fibro with no points, a low-grade fever every day isn't actually a fever, band 41 indicates nothing,and the best one, there's no Lyme in Florida. This still gets me so mad!! "Here, Honey, take some sleeping pills and your arthritic knee,neuropathy, fatigue, malaise, and splitting headaches will be just fine."
Thank God, even with brain fog I could see he was an idiot.
Posts: 246 | From south florida | Registered: Mar 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I had fibromyalgia. My LLMD diagnosed it (so he could prescribe Lyrica). All but one point reacted, so it was a clear diagnosis.
It went away completely with treatment. I no longer have it at all.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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"Here, Honey, take some sleeping pills and your arthritic knee,neuropathy, fatigue, malaise, and splitting headaches will be just fine."
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