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» LymeNet Flash » Questions and Discussion » Medical Questions » Fibromyalgia or Lymes or Same?

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Author Topic: Fibromyalgia or Lymes or Same?
woodslyme
Junior Member
Member # 5589

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Has anyone like myself been long time diagnosed with Fibromyalgia which there seems little help for, and actually gotten well by being treated for the tick diseases? I have been somewhat helped being treated with all kinds of antibiotics orally mostly, but some IV recently, with little change with not sleeping , colon problems constantly, inability to have much mental clarity - depression - much pain - exhaustion (which a few hormones like cortisol has really helped on this in last year of the fatigue,but not much else). Thanks for any advice - husband went to be with the Lord, and I'm on the farm alone now and struggling to feel well enough to keep going much of the time.
Posts: 5 | From Bucklin, Mo. USA | Registered: Apr 2004  |  IP: Logged | Report this post to a Moderator
JillF
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I was diagnosed with Fibro a few months ago after about a year of symptoms.

You name it, I got it. Muscle spasms, muscle twitches, soreness anywhere I'm touched, easily bruised, IBS-like symptoms, chest pain on both sides, rib pain (it sometimes feels like I've been beaten and kicked in the ribs, side and back area), sore muscles bones and joints, fatigue, tension headaches, stiffness, vision problems (floaters, spots, extended visual symptoms, night vision problems, problems with bright lights), teeth pain, myofacial pain, memory problems, concentration problems, word/name finding problems, dyslexic like speech, slurred words, chills, cold and hot off and on, night sweats, flu-like achiness at times, sun problems, etc. I also have fevers off and on and my CRP rate is now at 95!

My Fibro doctor keeps telling my doctor that not all the symptoms are Fibro related and for her to keep checking me for other things.

She, the Fibro doctor, does not think I have Lyme at all.

I self-diagnosed myself with Lyme (maybe? hopefully?).

I see the LLMD 2 Fridays from now.


Posts: 1485 | From USA | Registered: Apr 2004  |  IP: Logged | Report this post to a Moderator
Kerryblue
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I was miss dxed with both for over 10 yrs.

Have done alot of research on FM. Invovled with tests groups, worked in pain clinic lots of fmers.

In INHO there is a diff. Now is it a sub group...Possible.

Some were just in car accident, 1 was struck by lightening, few had been subjected to chemicals. Many found it inheritied qualities. Most had symptoms,mild as child, took major stressor to trigger.

The question here & on Fm board are diff. Most fmers the pain is overwhelming symptom.

There are diff. between fmers/cfids, which suffer more fatigue than pain. MS, which many times suffer also diff. symptoms. From loss of speech,bowel control,bladder.

The symtoms are close for sure. There are suttle diff.

Some of us just are fortunate enough to have both, Arghhhh..

Antibiotics work on mycroplasm infect. which may be 1 reason you may be getting help for both.

Fm is really a neuro/endocrine disorder. Most fmers, have had spinal or neck injury. There pain started many times higher up & spread. Not sure if lyme folks have all the TP`s that are apart of fm.

Do think now doc`s are just guessing & tell people they have fm when they do not. Just to get them off their backs. Without really listening & folowing up on ALL patient symptoms.

Do think alot of time they have lyme.

That is just my 2 cents. From hands on in clinic. Could go into alot more. Too boring & long & I feel like doo-doo....

Good Luck, Hope it is just 1,& not both.Lyme is enough so is Fm.


Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
riversinger
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Hi woodslyme,

Sorry to hear how you are feeling, but glad you found us. i hope we can help.

I was diagnosed with Irritable Bowel Syndrome 10 years ago, and Fibromyalgia 5 years ago.

Last year, when everything was getting much worse, I pushed to find out what else was wrong. Last fall I was diagnosed with Lyme, and was fortunate to have positive tests that left no doubt about the diagnosis.

We now suspect that I have had Lyme at least 11 years. I've been on various antibiotics for 8 months now.

Many of my Irritable Bowel symptoms are slowly resolving. Sleep problems are better, but I believe thyroid medication is making some of the difference there. My pain levels are much lower than 6 months ago.

Cognitive issues are up and down. These may also be affected by thyroid, which is still being adjusted.

While I feel Lyme and antibiotic treatment for it are very important, you have to cover all your bases. Hormone levels are often thrown off by long-term illness. Diet can be critical. Toxins may need to be addressed. Many also have co-infections that complicate the Lyme disease.

Your best bet is to see a Lyme Literate Medical Doctor to be evaluated. Diagnosis is complicated, and only someone with experience is going to know what to do.

You can go to the Seeking a Doctor section and make a request for a recommended doctor near you. And keep reading, there's lots to learn.


Posts: 2142 | From California | Registered: Nov 2003  |  IP: Logged | Report this post to a Moderator
WildCondor
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A small tidbit from my website explains it well...

What everyone needs to realize is that chronic fatigue, fibromyalgia, and arthritis are not diseases by themselves. Of course, they are real, but they are symptoms, not diseases. If you go to the doctor, and complain of being tired all the time, for 6 months or more, you are probably going to be diagnosed with chronic fatigue.

You have to use common sense here. You have a symptom, and you are being diagnosed with a symptom. It makes no sense! You need to find out the cause! Lyme disease, and the bacteria b.burgdorferi are the cause of the chronic fatigue. People join chronic fatigue support groups, they go on disability, they tell their family "I know what's wrong with me now, and I have chronic fatigue."

I still find it amazing just how many people get sucked into this giant conspiracy and line of thought. None of it makes any sense, yet we are so happy to have a diagnosis, we accept it. Meanwhile a cause is not found, and the person is left with an undiagnosed and untreated infection.

Many thousands of people believe they have fibromyalgia, chronic fatigue syndrome, depression, multiple sclerosis and more, and still they have no idea what the cause is. Wake up people and think with your brains! Normal, healthy people do not just suddenly come down with MS, or are exhausted all the time for no reason, there is always a cause.

Do not buy into the word syndrome either; it is just a word for a collection of symptoms for which the doctors label a syndrome because they have no idea what is wrong with you. The same thing is true for treatment of diseases. People seek out a cure, and what they get is not a cure, but medication to treat the symptoms. An example of this in Lyme disease is anti-inflammatory drugs, NSAIDS, or steroids prescribed to treat painful joints. The medications will work on the symptom, the pain, but the cause of the pain goes untreated. The smart treatment would be antibiotics, which directly kill the cause, plus supportive prescriptions to treat the symptoms and make the patient more comfortable. Therefore, in the previous example, the patient benefits from treatment aimed at the cure, plus they get symptom relief. Seek the cause people, always seek the cause.

------------------
Lyme Disease Help
http://www.wildcondor.com


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lymeinhell
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Woodslyme, your symptom list could be mine. And yes, I have Lyme, and suspected Bartonella.

Wildcondor - Bravo!!!!!! Well done. I'd like to put your words on a poster.

------------------
Julie G.
___________
lymeinhell


Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003  |  IP: Logged | Report this post to a Moderator
Sarah'smom
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Great post, Wild Condor-I thought I would scream if another doctor diagnosed Sarah with another syndrome!!!! I emailed you a few ???? Susie
Posts: 19 | From Spring Grove, PA USA | Registered: Aug 2003  |  IP: Logged | Report this post to a Moderator
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
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Oh yes, I was told the same thing. My symptoms were pain, vertigo, migraines, seizures, nose bleed, etc etc.

I came home "that day" from the doctor who poked me in various places and headed straight for the internet to look up fibro. This was after I was told I had MS, "a neurlogical disorder of unknown origion, etc".

I remember reading this forum of people with fibromyalgia and just balling reading the words

"There is no known cause, there is no known cure".

Right then and there, I refused to give up. And a thought came into my head.

If you weren't born with it, YOU ACQUIRED IT. And I sat and thought, these people HAVE to have something. What did they get into, or what got into them that caused this?

From there, I took my search further and kept coming up with something I kept coming up with a WEEK, just a week into becoming sick and that was "Lymenet". It took me NINE months to realize lymenet had an actual forum to it!

Do not give up! Don't fall for the fibro diagnosis. The MD's aren't done yet with coming up with diseases with no knownn cause or cure. It simply wont end.

A year from now, there will be something for example and hypothesis called "klonia disease". ANother disease with no known cause and no known cure. New diseases don't just spring up!

I believe in First Grade we are all taught about cause and effect. There is a cause for everything, and Fibro my friend is infection.


Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
rosesisland2000
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woodslyme, sounds like you are already seeing a Lyme Literate Medical Doctor (LLMD), are you?

If not, you have one of the top LLMD's right there in Missouri. LLMD's are few and far between. I come from very south Arkansas to MO to see mine. Just thought with all the antibiotics (abx) you've been given, that you may be seeing one. If you are not seeing him, check this out:
www.drcharlescrist.com

Welcome to LymeNet come back often...I hope you saw these responses...click the Post Reply to respond.

Rosemary
Edited to add something.

[This message has been edited by rosesisland2000 (edited 26 April 2004).]


Posts: 6191 | From Arkansas | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
woodslyme
Junior Member
Member # 5589

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Thanks to all replied to my question about Fibro. or Lyme - Same? But only l I think actually said they were significantly helped. I am seeing Dr. Crist in Springfield, and he has sure tried me on many anti., hormones have definitly helped energy (low on cortisol and it was always such an effor to just get around doing anything. But nothing else seems to improve after a l and a half years, and I don't think he hardly knows what else to try - IV treatments got too hard to do any more of - starting to have night mares again - sleep only if I take something to, and that usually causes some other problem like a blocked colon in the hospital with so many drugs. Be praying for all of you - the God of the Universe, and all that lives created through His Son will here us in His great mercy.
Posts: 5 | From Bucklin, Mo. USA | Registered: Apr 2004  |  IP: Logged | Report this post to a Moderator
   

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