Could this be something besides fibromyalgia?

Discussion in 'Ask the Doctor' started by Karen57, Jan 14, 2015.

  1. Karen57

    Karen57 Member

    Nov 1 2013 I had a phantom fever of 102+ with no other symptoms but rigors until it got higher th an 101 and aches. After that I had bronchitis steadily with a wheeze and one bout of pneumonia for a least 6 months. I am 57 and have had arthritis problems for awhile mainly painful in my lower left back because of a curve and slightly shorter (inch) left leg. The matching pain on the right side came months into the bronchitis. Plum oncologist found no lung or heart problems just the hiatal hernia I have had causing GERD for years. The bronchitis got better in the summer however fatigue and the phantom fevers about one day every 6 weeks on average took their toll and pain in my back spread to both sides. This is when fibromyalgia was diagnosed. I have also been off balance and dizzy. This fall the back got better so I started getting daily migraines. MRI without contrast, they could not get the needle in s vein which is common, was normal only s hoeing a few bright T2 spots in the white matter which is considered normal for my age. Maintenance meds are helping an helping me lose weight. I went for a nerve conduction test yesterday which was painful but normal however this morning I was on pain and could not straighten up for hours. I have also become anemic which is unusual without a specific cause such as pregnancy and peri- menopause the other 2 times. Migraines were common once a month pre-menopause but that was almost 8 years ago. Now I only get them a few times a year except recently.
    My concern is that the all over pain came in the middle if my health weirdness over the past year and comes and goes occasionally but what hurts frequently has severe arthritis. I can't take anti-inflammatories due to gastrointestinal issues so I was surprised that RA, ANA, and SED rate were all normal. My T2 reactive protein was high but that was 3 or 3 years ago during a physical.
    My paternal grandmother died of leukemia in her 70's but had health issues for years. My mother believes she had chronic leukemia before that but my grandmother passed away in the 1970s so I don't know how well things were checked. I have the same blood type, b negative. Could the anemia, fatigue, pain be early symptoms of that? My father passed from pancreatic cancer the horrible silent killer.
    Could it just be that I h Ave Chronic Fatigue Syndrome instead of of in addition to Fibromyalgia? FYI I can check off practically every symptom on both lists and did believe the Princess and the Pea story was based on truth when I was a kid. Cramps kept me out of school.
    Other than that I had pre eclampsia at the end of my one pregnancy and viral meningitis around 6 months after that. Otherwise, other than broken bones, I am healyhy. That is what bothered my doctor last year we it the constant illness. I do work fulltime or did, missing alot, and live with my mother so she can stay in her home.

    Thank you, Karen
  2. Nanie46

    Nanie46 Moderator

    The key is finding the root causes of one's symptoms. Labeling us as having FM does not address the cause, it only gives a new name to a set of symptoms.

    Many doctors do not try to find the cause. Often the root cause is infectious, such as Mycoplasma Pneumoniae, Borrelia burgdorferi (Lyme disease), Bartonella, etc.

    A functional medicine dr or integrative medicine dr would look for the root causes of your illness, and address them with you to help you get better.

    Here are some links so you can read about these infections. There is much more information available to read:
  3. Karen57

    Karen57 Member

    Thank you. I always wonder about Lyme and others suggested it but I think I was a kid since I had a tick. They used to get in my hair constantly from our Germany shepard. But that was in Charlotte NC not really known for Lyme. But you never know. Perhaps the time as a kid I thought I had ring worm from a pet was a bullseye rash. But would it wait till my 50s?

    Thanks for the info. I will check it out since it all started with a definite fever and one one fever occasion I was able to get into the doctor and had a white count of 18. No other symptoms but shakes and aches. It could be one of the other issues you mentioned.

    I appreciate your help.
  4. Karen57

    Karen57 Member

    Ok, now I am going to ask a total off the wall question. Several years ago I had a fever for a day where I could hardly stand and anything touching me was extremely painful, mattress, sheets, etc. It did not come back so the doctor thought it was just from the fever. Who knows. My off the wall question is that I just remembered that about 25 years ago a pregnant cat we adopted, owners were going to take her and her babies to the pound - do irresponsible- but after the babies one day she suddenly just bit my the back of my ankle pretty badly. She died when the kittens were about 8 weeks old. We aren't sure how but some of them had feline leukemia which we found out prior to preventative medication. Does that cross over? Grasping at straws. I probably am just worn down from years of working and caretaking my mother many times after surgeries. Thank you.
  5. Nanie46

    Nanie46 Moderator

    Hi Karen,

    I believe that feline leukemia virus only affects cats, not humans.

    It is my experience that there are many factors that can cause our chronic symptoms. It can start with one or more infections and if not properly treated at that time, a domino effect of dysfunction can occur in many body systems.

    Most doctors are not Lyme literate and do not understand chronic lyme disease. Testing for Lyme disease is horribly unreliable. Many people with Lyme disease have only ever tested negative. Most doctors don't know that though, and they think a negative test is the final say. Not to mention that the typical Lyme tests through Labcorp, Quest, etc leave out many Lyme specific bands from their western blots. These types of tests miss many cases of Lyme disease. The first Lyme test that Doctors usually do, an ELISA (Lyme screen), is even worse....misses most cases of Lyme.

    Conventional medicine is disease based. They diagnose you (give a name to your symptoms) and then give drugs to cover up the symptoms instead of looking for the causes.

    Functional medicine looks for the root causes of your symptoms and then works with you to address them, so that you can recover. Many times, we have to pay out of pocket to see a functional medicine dr and have testing, but it is worth it to get to the bottom of the illness.

    Perhaps you can ask friends and family if they know of any Functional medicine or Integrative Medicine practitioners in your area.

    I definitely wonder about Mycoplasma pneumoniae due to the symptoms you described. Often, people have more than one long standing infection though.

    It is also possible to have a dormant infection, such as Lyme or Bartonella, and then it reactivates due to some stressor, such as illness, an accident, death of family member/divorce, etc.

    You need a very knowledgeable doctor to take a good history, perform a good physical exam, order testing and look at the whole picture to figure out what all is going on, and where to go from here.

    Since food is medicine (or can also be poison), also try eating a very healthy, clean whole foods diet, avoiding processed/packaged foods, sugar, sugar substitutes, preservatives, dyes, etc. Going gluten free, dairy free and soy free, along with sugar free, is also usually very helpful since many people have leaky gut that contributes to their pain, fatigue, etc.

    Sugar is very inflammatory. Aspartame is poison, which is found in diet soda and other products.

    I'll add some more sites here so you can continue reading and researching.

    lots of great info, articles and podcasts on this functional medicine practitioners site:

    This is a functional medicine dr's site, you can search topics and read articles, etc:

    Another functional medicine dr's site that you can search and read articles:

    I like this can search for topics and find lots of great info:

    "Dr. Holtorf on Lyme Disease Diagnosis and Treatment - A Culmination of the Literature":

    "VIDEO: The Surprising Connection Between Lyme Disease and Fibromyalgia":

    "Lyme Disease: The Basics":

    article about infections:

    Info about Leaky Gut: gut

  6. Nanie46

    Nanie46 Moderator

  7. Karen57

    Karen57 Member

    Thank you.
  8. Alyssa-Admin

    Alyssa-Admin Active Member

    I totally agree with Nanie47. It is now time to move to a different doctor that is a functional medical practitioner. They take ALL of what is going on into account -the whole you... Sure wish there was someone like that where I live (central Scotland). I know that for CFS it can definitely be set off with an illness...Which would correlate with what you are saying. However, as you also rightly said, the two are both very similar in so many ways. However, it seems FM is brought about more from trauma than illness. My friend got CFS after having glandular fever, and that did it for her...she now has bouts of this on a regular basis. And then as mentioned - there is Lyme. My understanding is that there ARE tests for Lyme. To me it sounds like you have a lot of things going on and your doctor is doing their famous 'it's just your fibromyalgia'. I have been through 7 doctors since being here for 13 years! The internet is a wonderful place to meet well as get well as ending up being your own doctor and diagnosing yourself. Easily done! Do some research on a functional doctor. Hope you have a pain free day. A.x