Fibromyalgia vs Chronic Lyme

[Granny_Weatherwax]

If you have experience with either of these, please respond. Please don't quote as I am including lots of personal info and may delete the main post later.

 

I'm being assessed for fibromyalgia. I don't think I have it and do not want to see the rheumatologist. My symptoms began about a year ago (pain in the feet and ankles) and have now progressed (quite rapidly) to include both elbows and both knees. In looking online, I do not meet the criteria for the tender points. I cannot find any documentation indicating ankle pain in fibromyalgia. The ankles are my biggest source of pain.

 

I think my response to the pain was normal. When my ankles began hurting, I purchased new running shoes and hiking boots. I was training for an AT hike and hiking/walking between 5-20 miles a day. It made sense to me that my ankles would be sore.

 

When my elbows began to hurt, I thought it was due to my tennis game, which picked up considerably once my AT hike was cancelled. I began playing 3 times a week again and spending lots of time on the court practicing a variety of serves (including a kick serve). I'm not as young as I used to be and figured my body was reacting to the heavy practice load. That didn't account for both elbows though. :(

 

I have had multiple tick bites in the past three years. I've been on multiple rounds of Doxy to combat Lyme symptoms but nothing longer than 10 days. The generic lyme test has come back negative.

 

Five months ago I was bitten by a spider. The bite ulcerated but it healed (mostly) over time. I still have a dime sized purple spot where the bite was. The doctor has shrugged this off and hasn't even looked at the bite site.

 

What would you do? What type of care or assessment would you seek?

[Tiramisu]

Is there any swelling in your joints?

 

Are they stiff at any time of day?

 

Is the joint pain symmetrical on both sides of your body?

 

Do you remember being flexible in your younger years?

 

Can you gently pull your thumb forward so that it touches the inside of your wrist?

 

If you put your palm flat on a table can you bend your pinky to a ninety degree angle?

 

Have you noticed any increase in seasonal or food allergies?

[Spryte]

I would look for an LLMD. Go to lymenet.org and post in the Seeking a Doc section.

 

I was misdiagnosed by two neurologists, two rheumatologists, an Infectious Disease doc, a GI specialist, and at least 3 family practice docs. There were more along the way. Misdiagnoses that I lived with for significant amounts of time, long enough to internalize them and have them feel like part of my identity (years and years): fibromyalgia: CFS; connective tissue issues; MS; plantar fasciitis; gosh, there were tons more.

 

I finally was accidentally diagnosed, clinically - by a VET! After that, we ordered testing for Lyme and co-infections (I had an open minded NP). All of my tests were negative though. There was one, which showed what she said was an "old" infection, for a co-infection of Lyme called babesiosis. That little clue prompted me to find an LLMD and get on the waiting list. In the meantime, the NP did some research and started treating me for babesia, thinking it might still be active, but not any othe co-infections or Lyme. Order of treatment matters. It got ugly. DH feared I wouldn't wake some mornings. It was so much better with a knowledgeable LLMD.

 

So - long story but I don't have any of my misdiagnoses. I had 13 chronic infections simmering though. I needed a doc to run the right tests, from the right lab. (Igenex is good, but I never got a positive test for Lyme, in the form of a western blot. My body no longer produces antibodies to Lyme - Lyme cloaks itself to hide from the immune system (some great research out there on that), but I had a positive Lyme PCR, so that's proof positive.

 

Ugh, That was a lot of I statements, but there's my story.

 

I hope you don't have it, but just in case - get a god LLMD to evaluate you.

 

By the way, your foot pain and elbow pain made me think of Bartonella or Dr Burrascano's "Bartonella Like Organism." So do look into co-infections.

Edited August 31, 2016 by Spryte

[Ravin]

I would lay all this out for the rheumatologist. Fibro is a process of elimination diagnosis. That is, if you meet enough of the criteria and they have ruled out everything else, that's what you are diagnosed with.

 

The rheumatologist will be able to find tender points if you have them. And will be more likely to have run across less common complications of lyme associated with joint pain than your GP.

[Jean in Newcastle]

I have had fibro for 30 years now.  My ankles hurt a lot.  So do my wrists and elbows during a flare.  But I also have overwhelming fatigue, tender points and other symptoms of fibro. 

[Pawz4me]

Has rheumatoid arthritis been ruled out?

[TranquilMind]

If I were you, I would go directly to a lab that will run whatever blood tests you request, and request a Western Blot.

Skip the Elisa test, which most doctors do first.

There is a gold standard Western Blot,  done by IgeneX, but it must be ordered by a physician, typically an LLMD.   

 

I'd just do the regular Western Blot first and see if any bands show up positive.  If nothing is positive, even the more generic ones that can represent a variety of infections, I would move another direction, but I would have concern since you know you have had tick bites. 

 

The test will say the CDC demands you have 5 or more positive ones to have Lyme, but that isn't actually true.  Your body is changing all the time, and sometimes more and sometimes fewer will be positive until it is eliminated (which sometimes takes a long time for some).

[Granny_Weatherwax]

Thank you for the replies. I'm between classes and will come back and answer your questions as soon as I am able.

[MomsintheGarden]

How did your body react to antibiotics? Did you have any herxing? A hexheimer reaction of new and/or strange symptoms when on antibiotics can point to Lyme. Our ds had some very weird symptoms when he was put on zpac before he was diagnosed with Lyme.

 

I hope you can get some answers.

[Farrar]

I don't have any expertise, but I do know someone who lived for several years with a fibro diagnosis who was later diagnosed with chronic Lyme and, as I understand it, the fibro diagnosis was... I don't know the right word? Taken away? It sounded like a nightmare - none of the things she was being told to do for fibro really helped and it wasn't until she had the Lyme diagnosis that she was able to really get more relief. From talking to her, it seemed like they were potentially pretty easily confused, even by medical doctors.

[Spryte]

I don't have any expertise, but I do know someone who lived for several years with a fibro diagnosis who was later diagnosed with chronic Lyme and, as I understand it, the fibro diagnosis was... I don't know the right word? Taken away? It sounded like a nightmare - none of the things she was being told to do for fibro really helped and it wasn't until she had the Lyme diagnosis that she was able to really get more relief. From talking to her, it seemed like they were potentially pretty easily confused, even by medical doctors.

Yes, this is similar to my experience. I did have fibro, but it was the name for a set of symptoms, really, and when we removed the cause - I no longer had the symptoms. I would say I no longer have it. Ditto for chronic fatigue and myofascial pain syndrome and some other diagnoses.

 

Now, I always think it's wise to get someone experienced in tick borne diseases to check out diagnoses like those, that sort of don't have an identifiable root cause. It's certainly not always TBDs at the root, but why not do some serious checking before moving forward without hope?

Edited September 1, 2016 by Spryte

[kewb]

My personal opinion is that people who are diagnosed with fibro really have Lyme. Since the cdc says chronic Lyme doesn't exist you can't have that and they call your symptoms fibromyalgia.

 

Find a lyme literate doctor.

[Jean in Newcastle]

Fibromyalgia is a syndrome - a collection of symptoms.  There can be different root causes for symptoms.  For some people those root causes might be lyme.  For others, it can be a central nervous system disorder like fibromyalgia (at least that is the latest theory on what causes fibro symptoms.)

[Starr]

I know a young person with a similar spider? bite, cellulitis, lyme story. She noticed a red area that grew and appeared to be cellulitis, was treated with antibiotics and it appeared to heal for a couple of weeks. When it wasn't completely healed she went back and they treated her for lyme. Another friend ignored her health issues and was eventually diagnosed with fibromyalgia secondary to Lyme. She's been ill for a year. I continue to be surprised that doctors don't look/treat for Lyme in the beginning.

[HSmomof2]

I've had fibro for over 20 years along with Hashimotos. My symptoms in ankles/knees/elbows (and hands) are very similar to what you describe. I've never had a tick bite, and I don't live in an area where ticks are a big problem. I think being evaluated for Lyme and seeing the rheumatologist is still a good idea. My experience with rheumatologists has been very good. They've been much more thorough and look at the big picture of my symptoms better than any other dr.

[PinkyandtheBrains.]

 

 

I would go ahead and see a rheumatologist and look for a Lyme specialist too. Both have long waiting lists and a Rheum can help you rule out Fibromyalgia too.

[Granny_Weatherwax]

Is there any swelling in your joints? No swelling.

 

Are they stiff at any time of day? Ankles are stiff and painful every AM and after periods of non-movement. I haven't been able to find a pattern with my elbows, wrists, and knees.

 

Is the joint pain symmetrical on both sides of your body? Yes

 

Do you remember being flexible in your younger years? I've never been flexible.

 

Can you gently pull your thumb forward so that it touches the inside of your wrist? I can't make it touch the center of my palm but not in a downward motion to touch my wrist.

 

If you put your palm flat on a table can you bend your pinky to a ninety degree angle? No

 

Have you noticed any increase in seasonal or food allergies? No seasonal allergies. I'm already gluten/dairy free with a fairly mild diet. I cannot tolerate spicy foods.

I am curious as to what some of these questions indicate.

[Granny_Weatherwax]

I have had fibro for 30 years now.  My ankles hurt a lot.  So do my wrists and elbows during a flare.  But I also have overwhelming fatigue, tender points and other symptoms of fibro. 

I am curious as to how the rheumatologist will determine tender points. After reading about them I had DD and DH, on two separate occasions, palpate the ankle and elbow areas that are painful. They used some pretty decent pressure (especially DH) and there was no pain. As soon I stood up, however, the pain arrived and I limped around for awhile before working it out.

 

This is what I find most interesting about what is going on. I can play tennis for 2 hours and be just fine; my large motor function skills allow me to run, jump, serve, all of it. However, I cannot open a can of tennis balls because of the wrist pain. I can paddle my kayak without a problem but not open a bag of pasta. I can drive but have difficulty turning the ignition.

 

My elbows hurt almost constantly but I am not able to determine if anything aggravates them. Serving a tennis ball does not make them more painful. Neither does doing the dishes (drats, I was hoping to get out of that chore). 

 

Being a passenger in a car for more than 15 minutes is the worst. I don't know if it's the position or the lack of activity but getting up out of the car and trying to walk is an awful experience. I've begun carrying my trekking poles with me as walking aids.

[Granny_Weatherwax]

Has rheumatoid arthritis been ruled out?

Via blood analysis yes. As has Lupus & MS.

[Granny_Weatherwax]

How did your body react to antibiotics? Did you have any herxing? A hexheimer reaction of new and/or strange symptoms when on antibiotics can point to Lyme. Our ds had some very weird symptoms when he was put on zpac before he was diagnosed with Lyme.

 

I hope you can get some answers.

When I've been on the Doxy in the past, I've always felt better. The most recent zpac was at the beginning of this experience and I had a chronic cough (it had been hanging around for about three months; it began a few days after the spider bite). The cough cleared up but I cannot recall any herxing. 

[Granny_Weatherwax]

I went through a supposedly comprehensive list of fibromyalgia symptoms and am laughing at the inclusion of excessive gas. OMG, I am gassy. I think I posted on a thread earlier this summer about how I used to try to cover my flatulence by scrapping my tennis on the court. I found out that I wasn't successful and the ladies all knew about it.

 

:)

[Jean in Newcastle]

I am curious as to how the rheumatologist will determine tender points. After reading about them I had DD and DH, on two separate occasions, palpate the ankle and elbow areas that are painful. They used some pretty decent pressure (especially DH) and there was no pain. As soon I stood up, however, the pain arrived and I limped around for awhile before working it out.

 

This is what I find most interesting about what is going on. I can play tennis for 2 hours and be just fine; my large motor function skills allow me to run, jump, serve, all of it. However, I cannot open a can of tennis balls because of the wrist pain. I can paddle my kayak without a problem but not open a bag of pasta. I can drive but have difficulty turning the ignition.

 

My elbows hurt almost constantly but I am not able to determine if anything aggravates them. Serving a tennis ball does not make them more painful. Neither does doing the dishes (drats, I was hoping to get out of that chore). 

 

Being a passenger in a car for more than 15 minutes is the worst. I don't know if it's the position or the lack of activity but getting up out of the car and trying to walk is an awful experience. I've begun carrying my trekking poles with me as walking aids.

 

Even very small pressure on the tender points will cause me to jump through the roof.  I cannot even imagine playing tennis for two hours.  Fibro flares can start with hard exercise.  I just posted on another thread the breakthrough where I can now vacuum one floor of my house at once without pain or going to bed literally for two days afterward. 

 

Have you gone to a chiropractor?  I would see if having your spine aligned would help. 

[Granny_Weatherwax]

Even very small pressure on the tender points will cause me to jump through the roof.  I cannot even imagine playing tennis for two hours.  Fibro flares can start with hard exercise.  I just posted on another thread the breakthrough where I can now vacuum one floor of my house at once without pain or going to bed literally for two days afterward. 

 

Have you gone to a chiropractor?  I would see if having your spine aligned would help. 

I am so very sorry you have to live with pain like that. My experience is opening my eyes to what some individuals must deal with. It  makes me sad for you. It really does.

[Joules]

When I've been on the Doxy in the past, I've always felt better. The most recent zpac was at the beginning of this experience and I had a chronic cough (it had been hanging around for about three months; it began a few days after the spider bite). The cough cleared up but I cannot recall any herxing. 

 

I've been diagnosed with fibromyalgia and always get better on Doxy.  I just found out that I have SIBO.  It can cause a pain complex that is misdiagnosed as fibromyalgia.  I don't really have any of the classic GI symptoms...except a chronic cough.

 

It's a slim chance that it's your problem, too, but since I never heard of it before, I didn't even know to research it.  

[Katy]

Have you ever looked into Histamine Intolerance?

[Tiramisu]

I am curious as to what some of these questions indicate.

First, Rheumatoid arthritis. But now I see that has been ruled out.

 

Second, joint hypermobility or Ehlers-Danlos hypermobility type. Often there is a history of joint flexibility but often it is mild and overlooked. Pain can seeming come out of the blue or it can worsen over time or with overuse of certain joints. My DD has this problem. There are often co-existing gi is issues because it's a disorder of collagen synthesis and the gi tract has a lot of collagen.

 

Third, allergies. I had pain for years and my doctors were thinking fibro. Then I stopped taking the krill oil supplement I was using and my pain went away completely. I was also able to stop allergy meds. Prior to that my pain would flare if I stopped allergy meds for a few days. Also, my pain would flare when I was exposed to dust or high pollen counts. Now nothing. My friend had the same joint pain experience due to undiagnosed allergies.

[Ravin]

My personal opinion is that people who are diagnosed with fibro really have Lyme. Since the cdc says chronic Lyme doesn't exist you can't have that and they call your symptoms fibromyalgia.

 

Find a lyme literate doctor.

 

My DD was diagnosed with fibro. She's never been bitten by a tick. She's never been anywhere where she could have been bitten by a lyme tick. So there goes that theory.

 

It's important not to overgeneralize. The OP's situation DOES sound like one where it's reasonable to question ignoring Lyme as a possibility.

[Ravin]

I am curious as to how the rheumatologist will determine tender points. After reading about them I had DD and DH, on two separate occasions, palpate the ankle and elbow areas that are painful. They used some pretty decent pressure (especially DH) and there was no pain. As soon I stood up, however, the pain arrived and I limped around for awhile before working it out.

 

This is what I find most interesting about what is going on. I can play tennis for 2 hours and be just fine; my large motor function skills allow me to run, jump, serve, all of it. However, I cannot open a can of tennis balls because of the wrist pain. I can paddle my kayak without a problem but not open a bag of pasta. I can drive but have difficulty turning the ignition.

 

My elbows hurt almost constantly but I am not able to determine if anything aggravates them. Serving a tennis ball does not make them more painful. Neither does doing the dishes (drats, I was hoping to get out of that chore). 

 

Being a passenger in a car for more than 15 minutes is the worst. I don't know if it's the position or the lack of activity but getting up out of the car and trying to walk is an awful experience. I've begun carrying my trekking poles with me as walking aids.

 

With my DD, when she examined her, the rheumatologist just gently palpated various spots, and DD would jump and yelp. The amount of pressure was nothing that would warrant that in a spot that wasn't bruised or, well, tender, and she had experienced no injuries.

[Granny_Weatherwax]

With my DD, when she examined her, the rheumatologist just gently palpated various spots, and DD would jump and yelp. The amount of pressure was nothing that would warrant that in a spot that wasn't bruised or, well, tender, and she had experienced no injuries.

I am so sorry for your daughter. I am lucky that at this moment external pressure does not elicit or increase pain. It is this difference between me and your DD and Jean that piques my curiosity and further makes me question a fibro diagnosis.

[kewb]

My DD was diagnosed with fibro. She's never been bitten by a tick. She's never been anywhere where she could have been bitten by a lyme tick. So there goes that theory.

 

It's important not to overgeneralize. The OP's situation DOES sound like one where it's reasonable to question ignoring Lyme as a possibility.

I said it was my opinion. I fully admit I have no medical data to back up my opinion. I only have my own experiences and research. It is my opinion. I don't want to see one more person live without knowing. And yes, I think everyone with a fibro diagnosis should be checked for Lyme and it's coinfection friends. I am not overgeneralizing. Ticks are on all continents. If your daughter has ever been outside she has had the opportunity to meet a tick. Just because you never saw the bite doesn't mean it couldn't have happened.

 

My life and my families lives have been impacted greatly by my husbands undiagnosed Lyme. He was robbed of being part of his children's lives because he was too sick to be part of them. He missed plays, swim meets, track meets, family functions, just being with them because no one would say what was wrong with him. It was years before we were able to get a diagnosis. The OP should not rule at lyme because she didn't see a rash. That is a fact.

[Spryte]

I said it was my opinion. I fully admit I have no medical data to back up my opinion. I only have my own experiences and research. It is my opinion. I don't want to see one more person live without knowing. And yes, I think everyone with a fibro diagnosis should be checked for Lyme and it's coinfection friends. I am not overgeneralizing. Ticks are on all continents. If your daughter has ever been outside she has had the opportunity to meet a tick. Just because you never saw the bite doesn't mean it couldn't have happened.

 

My life and my families lives have been impacted greatly by my husbands undiagnosed Lyme. He was robbed of being part of his children's lives because he was too sick to be part of them. He missed plays, swim meets, track meets, family functions, just being with them because no one would say what was wrong with him. It was years before we were able to get a diagnosis. The OP should not rule at lyme because she didn't see a rash. That is a fact.

To further head down that bunny trail... Penguins in Antarctica have been found with ticks. So, really, they are everywhere. If a bird can fly there, or migrate there, they may carry and drop a tick with diseases.

 

And when someone like kewb mentions Lyme, she's never really just saying Lyme. I'm 99% sure she means the whole constellation of Tick Borne Diseases. Most people, and many docs, can't name more than 4 tick borne diseases. And the ones that aren't Lyme are much more serious long-term, than just Lyme, in my experience. My eldest son had Bartonella, which he contracted with no known tick bite, but did have what he thought were chigger bites, in a non-Lyme endemic area. This is a kid that almost never stepped outside. My younger son had Babesiosis over the summer, that started with viral meningitis (that part subsided on its own). We do daily tick checks and never saw a tick or a rash. He almost died twice over the summer, before we figured it out. So many docs missed it, even the Infectios Disease specialist at a national children's hospital. :(

 

It's definitely worth investigating. Plus, didn't OP say she's had tick bites? And several ten day courses of abx would not clear acute Lyme, you need to treat for a minimum of the entire lifecycle of the spirochete, to kill all the bugs. That's 30 consecutive days, minimum.

[Jean in Newcastle]

I said it was my opinion. I fully admit I have no medical data to back up my opinion. I only have my own experiences and research. It is my opinion. I don't want to see one more person live without knowing. And yes, I think everyone with a fibro diagnosis should be checked for Lyme and it's coinfection friends. I am not overgeneralizing. Ticks are on all continents. If your daughter has ever been outside she has had the opportunity to meet a tick. Just because you never saw the bite doesn't mean it couldn't have happened.

 

My life and my families lives have been impacted greatly by my husbands undiagnosed Lyme. He was robbed of being part of his children's lives because he was too sick to be part of them. He missed plays, swim meets, track meets, family functions, just being with them because no one would say what was wrong with him. It was years before we were able to get a diagnosis. The OP should not rule at lyme because she didn't see a rash. That is a fact.

Opinions like this are a slap in the face to people who have fibro and have been tested and examined for any number of things including tick borne diseases. It's one thing to suggest that people get certain things ruled out or possibly diagnosed. It's another thing entirely to dismiss my lifelong ( since my early 20's ) illness as being nonexistent. Believe it or not but there is real research being done on this condition. I agree that the OPs symptoms do not totally match mine. But don't tell me that I don't have fibro.

 

 

Sent from my iPhone using Tapatalk

[Jean in Newcastle]

Oh and I was on antibiotics for seven months straight last year and six months straight the year before. I still have fibro. Comparing one year of illness to my 30 years experience- well, perhaps I know something about this.

 

 

Sent from my iPhone using Tapatalk

[kewb]

Opinions like this are a slap in the face to people who have fibro and have been tested and examined for any number of things including tick borne diseases. It's one thing to suggest that people get certain things ruled out or possibly diagnosed. It's another thing entirely to dismiss my lifelong ( since my early 20's ) illness as being nonexistent. Believe it or not but there is real research being done on this condition. I agree that the OPs symptoms do not totally match mine. But don't tell me that I don't have fibro.

 

 

Sent from my iPhone using Tapatalk

I am certainly not trying to slap you in the face. I think people with fibromyalgia are absolutely sick and I don't think science has caught up with the illnesses.

 

No one should have to try to navigate the grey area of medicine.