LymeNet Flash: Lyme/Fibromyalgia

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Posted by Dave Wiliiams on :

I tested positve for Lyme two years ago. Like many, I keep relapsing. I am wondering if there is any direct or indirect link between Lyme and Fibromyalgia/Chronic Fatique Syndrome? The symptoms seem all too familiar.
Dave

Posted by lifewithlyme (Member # 4557) on :

Hi Dave,
What kind of symptoms are you experiencing? are you currently being treated?

Posted by JillF (Member # 5553) on :

I have been diagnosed with FMS. I'm still waiting for my test results to tell me if I'm positive for Lyme...

Anyway, my Rheumatologist kept telling my doctor that most of my symptoms aren't FMS related and to keep looking for whatever it is that I have. She, the rheumatologist, says there is no way I have Lyme...

I have 16 of the 18 trigger points. But anywhere you touch me pretty much hurts - although it hurts alot worse at the trigger points.

So, yes, I think FMS and Lyme are either related or have something to do with one another - they both have some of the same symptoms.

Of course, Lyme is known as the great imitator. So, maybe it just imitates FMS and that's why some of the symptoms are FMS and CFS related.

I know that some think I may have Lupus because my symptoms are very closely related to Lupus.

My test results couldn't come any faster for me...

Posted by Kara Tyson (Member # 939) on :

My personal opinion is that Fibro. and Chronic Fatigue do not exist as a disease. A list of symtpoms like Fibro is not a disease & You dont have a disease of being tired! Something is causing it. I believe that there is an underlying cause...whether it is Lyme or not could be debated.

In regards to Lupus & MS it isnt really an either/or situation. You can have Lupus caused by the Lyme bacteria. You can have MS caused by the Lyme bacteria.

Dont rely on a lyme test to rule out Lyme Disease. Like many others here, I dont make antibodies.

Posted by JillF (Member # 5553) on :

That makes a lot of sense about FMS being just one of many symptoms.

I'm just HOPING I test positive. It would be nice to be positive about something, anything...

Posted by Dave Wiliiams on :

I am currently being treated off and on with oral antibiotics. This seems to help but I relapse within 3 weeks after treatment. In 2003 I was treated with IV Rochphrin for one month. No improvement. Symtoms are pain/swelling in joints (ankle,knees,hip, etc. Severe fatique particularly in the afternoons. Some inability to concetrate.

quote:
Originally posted by lifewithlyme:
Hi Dave,
What kind of symptoms are you experiencing? are you currently being treated?

Posted by David95928 (Member # 3521) on :

Dave,
There is an abstract floating around here reporting a finding that a high proportion of CF patients test positive for Lyme. Many here were previously diagnosed with fibromyallgia, chronic fatigue, MS, and even ALS. There is another abstract around here regaridng an entymologist (bug scientist) who has found strong positive correlation between tick infestations and MS cluster. So, to answer your questing, many here believe there are strong connections and thatLyme and other stealth infections are the underlying cause of many syndromes that are described but not explained.
David
P.S. Please ignore the spat that's going on right now. It isn't always like this. We are a fun group and episodically pick up troublesome hitchikers.

Posted by David95928 (Member # 3521) on :

Dave, you posted again while I was responding to your first post. It seem most probable to me that your Lyme has gone chronic and are not getting long enough runs of antibiotics. A lot of people here are fairly disenchanted with Rocephin. Although it does help some, there are A LOT of prompt relapses.
Your symptoms are very familiar. Fortunately I'm much better now that I have been being treated for over a year.
You will probably need to find another doctor, preferably one specializing in Lyme. However, mine is a family practitioner who only treats a few Lyme patients. He's been wonderful.
David

Posted by mrdsmom (Member # 5630) on :

Hi Dave,

Here's my story: In 2000, I was treated orally for LD for 2 months. Still had symptons, so I went to a Infectious Disease doctor. He told me my LD was "cured" and since I was a single mom with a 4 year old it would take up to 6 months to feel better because I had to run after my son, clean house, work, etc. If I didn't do that(& rested), I'd feel better in 4 wks. (Never did go back to that doctor. So I went to Reumo. and was dx'd with FMS/CFS. In 2002, had a car accident which sent me to a chiropractor. He told me that if I found the disease that was causing the FMS/CFS symptoms, I could get better. He thought if I was tested for LD before, I probably still had it. He sent me to a LLMD and of course was tested positive for Lyme. Maybe a different Med. with IV might work. I had Vanco. and it didn't help, but the doctor is planning on trying Doxy. again.

After I left the chiropractor, I pulled out both my Lyme book and my FMS book and read the symptoms...they definately overlapped...

------------------
Do unto others as you would have them do unto you.

Posted by Dave Wiliiams on :

Most definately I am chronic. I have just finished mega doses, orally, of Biactin and Augmentin. Symptoms actually worsened during treatment. Some noticable improvement three days after stopping. Few doctors understand Lyme in So. California but fortunately my current doctor is taking agressive action. I'm not too comforatable with massive doses of antibiotics but, if it works?

quote:
Originally posted by David95928:
Dave, you posted again while I was responding to your first post. It seem most probable to me that your Lyme has gone chronic and are not getting long enough runs of antibiotics. A lot of people here are fairly disenchanted with Rocephin. Although it does help some, there are A LOT of prompt relapses.
Your symptoms are very familiar. Fortunately I'm much better now that I have been being treated for over a year.
You will probably need to find another doctor, preferably one specializing in Lyme. However, mine is a family practitioner who only treats a few Lyme patients. He's been wonderful.
David

Posted by Aniek (Member # 5374) on :

Dave,

Fibromyalgia is not a disease or an illness in and of itself. Any good doctor will tell you that.

Fibromyalgia is a syndrome. The definition of a syndrome is "A group of symptoms that collectively indicate or characterize a disease, psychological disorder, or other abnormal condition."

So, the dx of Fibromyalgia is saying you have a number of these symptoms, that seem to occur collectively and indicate there is something wrong. But, we don't know what's causing the symptoms. (Chronic Fatiuge is also a syndrome)

Think about it this way, before we knew about AIDS before we knew about the HIV virus. The S in AIDS stands for syndrome.

BTW - fibro is also referred to as the great imitator.

Posted by katclimber (Member # 5604) on :

Funny, I thought Lyme was the 'great imitator.'

Or was it Chronic Fatigue Syndrome?

Seems like that label is getting stuck on an awful lot of disorders/syndrome/collections of symptoms.

Dave, those of us with fibromyalgia or myofascial pain syndrome (myself) have extra complexities to deal with, because there are so many different things that can cause it or aggrevate it.

Links have been made between CFS and Epstein-Barr virus...

I'm wondering the same question as you, 2.5 years after having lyme and still struggling with bad back/neck/etc. pain. Is it still Lyme or is it just leftover neuromuscular damage?

I think a lot is nutritional. People with these syndromes usually respond well to diet/exercise/lifestyle changes. Most of us lead really unhealthy lives!

Do you have "tender" points or "trigger" points? Trigger points (which are tight and knotty feeling) are myofascial pain syndrome. Tender points (soft and painful) are fibromyalgia. (Just wanna make sure your doctor is not sending you down the wrong path, with all due respect. I accidently went down that path myself once.)

Karyn

Posted by Dave Wiliiams on :

Thanks for the information. Most helpful. A bit of a dilemma, No? I wonder how they treat Fibromyalgia and CFS?

quote:
Originally posted by Aniek:
Dave,
Fibromyalgia is not a disease or an illness in and of itself. Any good doctor will tell you that.
Fibromyalgia is a syndrome. The definition of a syndrome is "A group of symptoms that collectively indicate or characterize a disease, psychological disorder, or other abnormal condition."
So, the dx of Fibromyalgia is saying you have a number of these symptoms, that seem to occur collectively and indicate there is something wrong. But, we don't know what's causing the symptoms. (Chronic Fatiuge is also a syndrome)
Think about it this way, before we knew about AIDS before we knew about the HIV virus. The S in AIDS stands for syndrome.
BTW - fibro is also referred to as the great imitator.

Posted by Aniek (Member # 5374) on :

Most commonly, fibromyalgia is treated by treating the symptoms. However, some doctors believe it is caused by neurotoxins, mycoplasma, or other infections and aim to treat those.

The common treatments of the symptoms aim to reduce pain and improve sleep. Many people with fibro end up on multiple medicines.

It is common to prescribe antidepressants that are supposed to increase seratonin and therefore improve sleep and decrease pain. Studies have shown people with fibro have an imbalance in their neurotransmitters. Nobody knows if it's a cause or reaction though.

Many people are on pain killers. I have a prescription for vicodin that I take very rarely, because I don't like how pain killers make me feel. Those who are constant pain killers often become physically dependent and have to continually increase the dose or change meds. (Physically dependent is not addicted, it just means your body adjusted to the meds)

I also take Flexeril, which is a muscle relaxer. My pain specialist said that he has seen a large success in his patients who complain of upper back and shoulder pain with Flexeril.

The other side to treatment is physical therapy and exercise. I spent months in PT with the therapist working to release my trigger points. I started in November, and switched to light strengthening about a month ago.

My pain specialist says exercise is the most important thing. I think the sooner, the better. The longer you have fibro, the harder it is to start exercising because of muscle atrophy.

Posted by docdave130 on :

something very interesting is going on with autoimmune disease treatment in this country within the last year or two. they are now treating most autoimmune diseases with either the same abx regimen as lyme disease or they are trying the aids approach using antiviral agents. I have thought for 20 years now, since I diagnosed my mother in law with lupus while i was in dental school and Hopkins could not,that most of the autoimmune diseases are very very similar, and therefore probably have a common modality.
I felt that if they were able to find treatment for 1 disease then they could use the same treatment on all autoimmune diseases. they are still treating lupus unsucessfully with cortisone, knowing that this is the wrong treatment , and steroids lower the immune response.
all this new info on the sarc website and the rheumatoid arthritis website proves my theory because people are finally starting to get the right treatment.
for years they treated ulcers with antacids until they found a bacteria caused it.
So in conclusion, it should not matter that much what the actual diagnosis turns out to be , the treatment should be the lyme protocol for your symptoms and you must find a literate doctor that knows to treat you with iv abx and the lyme protocol.
docdave

Posted by Dave Wiliiams on :

I have learned a lot from this discussion but I remain somewhat confused. I wonder how many patients, testing positive for Lyme, also have Fibromyalgia? Or is Lyme just mimicing Fibromyalgia? In addtion to being treated with the Lyme protocol would it not be some relief to add Flexinal or some drug like it to the treatment? In-other-words get treatment for both Fibro and Lyme.

quote:
Originally posted by docdave130:
something very interesting is going on with autoimmune disease treatment in this country within the last year or two. they are now treating most autoimmune diseases with either the same abx regimen as lyme disease or they are trying the aids approach using antiviral agents. I have thought for 20 years now, since I diagnosed my mother in law with lupus while i was in dental school and Hopkins could not,that most of the autoimmune diseases are very very similar, and therefore probably have a common modality.
I felt that if they were able to find treatment for 1 disease then they could use the same treatment on all autoimmune diseases. they are still treating lupus unsucessfully with cortisone, knowing that this is the wrong treatment , and steroids lower the immune response.
all this new info on the sarc website and the rheumatoid arthritis website proves my theory because people are finally starting to get the right treatment.
for years they treated ulcers with antacids until they found a bacteria caused it.
So in conclusion, it should not matter that much what the actual diagnosis turns out to be , the treatment should be the lyme protocol for your symptoms and you must find a literate doctor that knows to treat you with iv abx and the lyme protocol.
docdave

Posted by treepatrol (Member # 4117) on :

I was good for 7.5 months and relapsed so I start really looking around about is lyme a std sexually transmitted disease and I found quite a few things pointing to maybe it is.

So I had my wife tested guess what she has lyme too she did exhibit some symtoms. So now shes being treated for lyme also.
I guess I should have just asked if you are married ? Maybe your passing it back and forth. If your not disregard.

Sexually Transmitted ??? http://flash.lymenet.org/ubb/Forum1/HTML/017501.html http://flash.lymenet.org/ubb/Forum1/HTML/023077.html

------------------
Do unto others as you would have them do unto you.

Posted by AmandaPI (Member # 5587) on :

I was diagnosed three years ago with FM and told that there is no cure and that I would need to "manage" my symptomes with pain meds, muscle relaxers, antidepressants, stimulants, etc... I questioned my dr. and she said that there was nothing else wrong. It never felt right. Last Novemeber a Naturapic dr. told me that I had Lyme but I had no proof so I went to a infectious specialist and she tested me for Lyme and told me I was negative. I still questioned the results and went out of state to a LLMD and he had me tests sent to Igenix. Then I got a stong positive Igm western blot.
My point would be...anyone that is tested positive for Lyme in my opinion should be on antibiotics and have a good LLMD. I wasted three years for a diagnosis and agree with what has been said before. FM is a syndrome not a disease and therefore there may be an underlying cause.
Good luck and be well

Posted by Aniek (Member # 5374) on :

I wouldn't look at it as Lyme and Fibro. Lyme can cause the symptoms that are called fibromyalgia. So can other infections. Often there are multiple infections manifesting in the symptoms.

Lyme isn't mimicking fibro. Lyme may cause fibro, as other infections or an accident can cause fibro. Because fibro is not really an illness. It's just a word that engulfs about 50 or so symptoms you might have.

Yes, if you have fibro symptoms you should get treated while treating the Lyme. But the fibro treatment doesn't get rid of the fibro, it just helps reduce the symptoms. I am continuing to see a pain specialist who has me on Flexeril for the pain. Hopefully, the Lyme treatment will eventual get rid of the fibro symptoms.

quote:
Originally posted by Dave Wiliiams:
I have learned a lot from this discussion but I remain somewhat confused. I wonder how many patients, testing positive for Lyme, also have Fibromyalgia? Or is Lyme just mimicing Fibromyalgia? In addtion to being treated with the Lyme protocol would it not be some relief to add Flexinal or some drug like it to the treatment? In-other-words get treatment for both Fibro and Lyme.

Posted by riversinger (Member # 4851) on :

Dave, I have to say I agree with Aniek.

I was diagnosed with FMS years ago, and more recently with Lyme. I believe Lyme is at least one of the causes of my FMS.

You can certainly treat both, though FMS treatment is mainly palliative. That means they are just trying to relieve symptoms.

There is a benefit to pain relief beyond the obvious. When you experience pain for a long time, the nervous system becomes oversensitized.

By aggressively treating chronic pain, the over sensitization can be reversed, and you will actually experience lower pain levels.

This is one instance when it is not best to tough things out.

Many methods can be used to manage the pain, from medications to biofeedback, deep breathing, gentle manipulation, stretching or yoga. Usually it takes a combination of these. Don't let anybody tell you it is psychological! It's physical and chemical.

And treat the infectious cause!

Posted by lymeinhell (Member # 4622) on :

Just wanted to say hi and welcome.

You mentioned during your one post that you'felt better after 3 days off the antibiotics'.. My guess is you were herxing.. And that could be a positive thing, if you're still seeking a Lyme diagnosis.

I too am of the belief the Fibro/CFS are symptom sets. Lyme can cause these 'mystery ailments'. A good LLMD will help you address the pain issues and inflammation issues - not just give you antibiotics and send you on your way.

There are options out there. My LLMD put me on Flexeril about 8 weeks ago - it has made a huge difference in my life. I sleep all night now, and I'm not in so much agony when I wake up.

Also, you haven't mentioned if you were tested/treated for co-infections. This could also be adding to your relapses. If you have co-infections (Bartonella, Babesiosis, Erlichiosis) and they aren't treated, you'll never be able to get rid of the Lyme. Co-infection testing is also quite reliable, so you may need an LLMD to diagnose clinically.

Good luck to you.

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

Posted by Aniek (Member # 5374) on :

Julie,

My grandparents used to live in Tom's River. Spent many a summer day by the boardwalk

How much Flexeril are you taking? Flexeril is the only reason I can function on a daily basis. I gradually increased my dose. It helped at lower doses, but when I went from 20mg to 30mg, it was like a whole new me. Pain that had been there for 18 months was just gone.

The only think is waking up. I have a friend who likes to ask me what the high and low points of my day are. Since taking Flexeril, waking up is always the low point.

Posted by Dave Wiliiams on :

Many thanks for your comments. I will ask my MD about Flexeril and testing for other coinfections. I tested positive for Lyme over two years ago. The PCR test was also a strong positive. I was told that they could see bug parts on my DNA. I'm not sure what that means but I conclude that it was not good. I have no idea when I became infected but it must have been some time ago. I'm familiar with the "Herx" reaction and, most probably, I was having it. After two weeks on 2000 mg of Augmentin daily, they added 1000-mg of Biactin. Within days, all hell broke loose. I've been off everything for one week and feel some improvement. The whole thing gets discouraging. So far, as you say, I get nothing but antibiotics and they send me on my way. If Flexeril can give some relief for the aches and pains, why not? Thanks again for your helpful comments. I'm starting to get into some active reading about this strange disease. Just finished Bullseye-Unraveling the mystery of Lyme and Coping with Lyme. The more I read, the more of a puzzle this becomes. Dave

quote:
Originally posted by lymeinhell:
Just wanted to say hi and welcome.
You mentioned during your one post that you'felt better after 3 days off the antibiotics'.. My guess is you were herxing.. And that could be a positive thing, if you're still seeking a Lyme diagnosis.
I too am of the belief the Fibro/CFS are symptom sets. Lyme can cause these 'mystery ailments'. A good LLMD will help you address the pain issues and inflammation issues - not just give you antibiotics and send you on your way.
There are options out there. My LLMD put me on Flexeril about 8 weeks ago - it has made a huge difference in my life. I sleep all night now, and I'm not in so much agony when I wake up.
Also, you haven't mentioned if you were tested/treated for co-infections. This could also be adding to your relapses. If you have co-infections (Bartonella, Babesiosis, Erlichiosis) and they aren't treated, you'll never be able to get rid of the Lyme. Co-infection testing is also quite reliable, so you may need an LLMD to diagnose clinically.
Good luck to you.

Posted by JillF (Member # 5553) on :

I have noticed that alot of my pain and symptoms have faded since I started taking Flexeril and Amitriptyline.

I don't know if it's the pain medication (Flexeril) or sleeping full nights (Amitripyline). All I know is that I feel soooo much better!

Posted by Aniek (Member # 5374) on :

As patients, we must always remember that we have the right to pain relief. Enduring large amounts of pain not only prevents us from enjoying and participating in many activities, it can actualy hinder or recovery.

Pain causes stress that can impact your immune system. Intense pain from a herx may force you to choose a longer recovery path. It can disturb your sleep, limit your exercise or impact your mood.

If your LLMD will not treat your pain properly, then find a pain specialist. A pain specialist should be able to help you find the right medicines and other therapies for your particular pain.

Each of us will find a different path to pain relief. Flexeril was the fourth drug I tried, and it worked. Flexeril is not a pain reliever, it is a muscle relaxer. So it may not help joint pain. I also take vicodin or ibuprofen when I need to.

Posted by LLLucille (Member # 1443) on :

My primary doctor tried to give me a diagnosis of FM or CFS after the so-called infectious disease "specialist" told him there was no way I could have lyme disease. When I asked what caused FM and CFS and how were they treated, my doctor told me that they had no known cause and no known treatment. I refused to accept this diagnosis because I knew I had been bitten by a tick and my symptoms started a week later. I kept insisting I had lyme disease.

It's my personal opinion (which, granted, probably doesn't count for much) that FM and CFS are diagnoses that they lump you into when they can't figure out what the REAL problem is. In my case, it was lyme disease.