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Posts Tagged ‘Fibro flare’

A New Year, a New Diagnosis

January 6th, 2013

Lupus often results in a butterfly shaped, or mylar rash, on the face.

Lupus flares often leave patients with a characteristic butterfly-shaped rash.
Photo Credit: University of Minnesota

2012 went out with a bang as I found myself subject to another battery of lab tests to check for more autoimmune illnesses. Most of the time my blood screenings are perfectly normal, however this time was an exception to the rule. I received a dreaded call from my doctor’s office alerting me to the fact that I probably have Lupus, but they couldn’t be sure with 100% certainty.  Dr. House will tell you, “It is never Lupus.” But in the real world sometimes it is. The Lupus Foundation of America estimates that 1.5 million Americans, and at least five million people worldwide, have a form of lupus1.

Lupus, like Lyme Disease, is often called the great imitator because of its ability to mimic other diseases. Similar to screening for Fibromyalgia, other illnesses must be ruled out before a patient receives a diagnosis of Lupus. One would hope any screening for Fibromyalgia or Lupus would included testing for Lyme disease, however there are glaring inaccuracies in screening for Lyme bacteria. Blood tests for Lupus aren’t 100 percent accurate either. Sometimes patients have all of the symptoms without positive labwork, so doctors find themselves making a diagnosis based upon symptoms alone.

Much of my bloodwork for Lupus was negative, however I did test positive for the Lupus anticoagulent that can lead to blood clots. Also my body was producing a small amount of antibodies to double-stranded DNA (anti-dsDNA). These are antibodies that attack the DNA, the genetic material inside the cell nucleus. Anti-dsDNA antibodies are found in half of the people with lupus, but lupus can still be present even if these antibodies are not detected2. This autoimmune response means that my immune system cannot tell the difference between foreign invaders and my body’s healthy tissues causing inflammation, pain, and damage in various parts of the body.

I am a bit confused by this new diagnosis and I find that I have more questions than answers. Do I really have Fibromyalgia? How long have I had Lupus, if it is really Lupus? Did the Lyme bacteria and other tick-borne coinfections trigger this autoimmune response in my body? Will the Lupus go away after receiving proper treatment for the Lyme Disease? Could I have drug induced Lupus from the aggressive antibiotic treatment I have been undergoing for Lyme Disease and other tick borne coinfections? How will this new diagnosis impact my quality of life? Will I ever feel well again? Hopefully this new diagnosis will provide a better pathway to treating my illness, but as of now I am feeling quite ambivalent.

 

 

  1. Statistics on Lupus []
  2. Laboratory Tests for Lupus []

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Adrenal Fatigue and Fibromyalgia

November 8th, 2010

Adrenal Dysfunction is listed as a possible cause of Fibromyalgia on the Environmental Illness Resource website in an article by Dr. Rodger Murphree. The adrenal glands tell the body when to release hormones that help us cope with stress. If your adrenals are not working properly, your body is unable to cope with stress and this could trigger a Fibromyalgia flare.1
Book Cover for Treating and Beating Fibromyalgia
Special adrenal support supplements are available to help you restore proper adrenal function to your body. I’ve started taking one and it has made a world of difference. After starting the adrenal supplement, I’ve managed to work three full weeks without having to take a sick day due to a flare-up! It isn’t enough just to take the supplement though, you also need to learn how to better cope with stress. I’m currently reading a few books about coping with stress and I’ve also made an appointment for counseling. Maybe I can learn how to say no to people.

For more information read Dr. Rodger Murphree’s book, Treating and Beating Fibromyalgia and Chronic Fatigue Syndrome. Dr. Murphree recommends various supplements and sells them on his website. You should consult with your doctor before using any supplements. The adrenal support that I am on is formulated by my doctor and sold at his office. I have not tried any of Dr. Murphee’s supplements, and therefore do not endorse them.

  1. Causes and Treatment of Fibromyalgia. Environmental Illness Resource. []

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Weather and Stress Trigger Fibromyalgia

October 15th, 2010

Over the summer I felt that I had made an almost full recovery from my Fibromyalgia. Modifying my diet to one that consisted of low grains, no gluten, and no processed foods changed my life. I felt like a new person. The summer has ended and so has the concept that diet alone affects my Fibromyalgia flares.

Fall has always been a rough time on me because of the change in weather; the decreasing sunshine and the cooler weather can wreak havoc on most sufferers’ Fibro. In June of this year I was diagnosed with vitamin D deficiency, and so I made a big effort over the summer to get morning sunshine so my body would make its own vitamin D. I just felt like the supplements the doctor put me on wouldn’t be absorbed properly given the current state of my digestive system. My gut is still healing from the years of abuse from chemically treated processed foods. Now that I am back to my work as a middle school librarian, I’ve been missing my morning walks in the sunshine. Is that why this year’s fall fibro flare has been so bad or is it something else entirely?

I have been back to work for about 8 weeks now, and on average have taken about one sick day per week. The pain and stiffness have been so bad at times that it was difficult for me to hold a phone to call the doctor. Of course there have been days that I have gone to work and suffered through times when trying to carry just a few paperbacks was a chore. It has gotten so bad that several people have mentioned the “D” word – Disability. I cringe. My response is that I am only 32 years old and I have a Masters degree. I want to work. I want to have a career. I shouldn’t feel like this.

So I went back to keeping a food journal, and also started tracking my work activities, along with my chemical exposures at work using Google calendar. My doctor diagnosed me with environmental illness upon my return to school because I was reacting to fragrances the students wear, along with the VOCs the laminator puts off into the library. The days the lamminator is on I feel extreme nausea, fatigue, dizziness, and the fibro fog hits me so hard I can barely walk around the library.

I’ve tried all kinds of medications, and most of the time the side effects seem to make me feel worse not better. However, as a last ditch effort, my family doctor wanted me to try Savella. I was optimistic that it would help. If medicine will help me cope I will take it, but if it is not effective I don’t see the point in overtaxing my liver and kidneys. I was only on the Savella for 3 days before I was advised to discontinue the drug due to chest pain. I was still on the lowest dose in the titer pack, and was feeling dizzy, nauseous and that fog came back. I am just baffled that Savella and Lyrica are marketed for Fibromyalgia treatment, when the side-effects they cause can be so similar to what they are trying to treat. I don’t want to feel like a walking zombie, and I don’t think I should have to suffer with chronic pain either.

I hit rock bottom about a week ago. I am so sick of trying to figure out how to cope with this syndrome, but yet I persist because I am only 32. I want to work and I have an almost 4-year-old son. What I discovered while tracking my day to day schedule, with my food diary and chemical exposure, will not surprise you. It may annoy you because you have heard it many times before, but I think this not-so-hidden trigger is really just stress. I went from enjoying my summer holiday, to being thrown into the lion’s den that is middle school. My fight-or-flight reflex has gone into overdrive triggering a horrible Fibromyalgia flare.

So at my lowest point, I went back to my rheumatologist begging him to help me cope with the pain caused by the stress and anxiety. The doctor laughed at me and offered to put me on some medication. He wanted to try Savella, but I told him of my bad experience with it, and he said, “Well I would like to try it again.” I told him it hadn’t been a week since I had taken it. He said, “What about Cymbalta?” My response to that was, “Isn’t it essentially the same thing as Savella?” It is also an SNRI, and I just thought that I would probably react to that one with chest pain too. “So we will go back to the Lyrica then.” Ugh.

I told the rheumatologist that when I was on Lyrica before, that I could barely drive. I was so fatigued and foggy headed that I almost got into two fatal car accidents! His response was, we will just put you on a low dose and you can take it at night only. We will pair it with Flexiril, a muscle relaxant. I just said “Okay.” Obviously this doctor was not going to listen to me. I had to spend more time explaining to him why my job was stressful than we dealt with treatment. Shouldn’t the fact that I work in a middle school be red flag enough that my job is stressful? He said, “How do you want me to advise you? Maybe you should leave your job.” And do what exactly? I love my job, even though looking at my calendar I discovered that most of the time I am literally suppose to be in two places at once, the broadcasting studio and the main library. Instead of just giving me some drugs that will make me numb, how about you refer me to someone that can help me cope with stress? But I guess it is easier just to give me some drugs and send me on my way than actually do anything to prevent triggering the Fibro flares in the first place.

I left his office and headed for the pharmacy. I was still debating whether or not I wanted to go back on the Lyrica, but I had to pick up my Vitamin D pills for the month anyway. I decided to speak (I mean cry) to the pharmacist. She suggested trying Nerontin over the Lyrica, if I decided to go back on that type of medication. Mostly she recommended I find a new doctor. I seem to go through doctors like water.

I spent the afternoon trying to find someone that specialized in environmental illness with no luck. Many mainstream doctors, like my lovely rheumatoligist, don’t seem to recognize it as a valid diagnosis. Remember when the diagnosis of Fibromyalgia didn’t hold any water? Well at least Fibro is becoming more recognized today. Pharmaceuticals are marketing drugs for treating it so, now doctors have options for helping treat patients with a diagnosis of Fibromyalgia. I think perhaps the only way someone with environmental illness will be able to be treated is through holistic medicine. Giving me more drugs doesn’t seem to make me feel better. Sure you can numb my hands and arms so I can’t feel the burning pain sensations, but that doesn’t really fix my problem.

Besides going to the rheumatoligist, I went to Dr. Charles Turner’s office for a somewhat weird body-balancing treatment (BBT), that uses accupressure to sort of reprogram your body not to react to certain foods, chemicals and emotions. This is based on Nambudripad Allergy Elimination Techniques (NAET), which comes out of more eastern medicine practices. I’ve only had two treatments, and I do seem to improve each time I have one, but I have no idea why this works. More than the BBT, I think the adrenal support supplement they gave me is helping me get through each day. I seem less emotional, I have more energy, and less pain on the supplement.

I didn’t start back on the Lyrica, and I am hoping that I won’t have to do so. I’m continuing to research adrenal insufficiency and stress coping mechanisms. I’m a type A perfectionist, people pleaser to the core. Learning to say no without feeling guilty is the next thing on my to do list.

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Oh the Pain

September 29th, 2010

web-icon GrainI haven’t felt this bad in a while and I can only attribute my latest fibro flare to my mishap at the dentist’s office on Monday. Having felt bad all day, I decided to take some benadryl to see if that would help. If anything I think it made the situation worse. Then yesterday I had a horrible migraine which I think was triggered by taking my class on a field trip to a 3D IMAX film. Not sure if it was wearing the 3D glasses or I noticed fumes on the bus ride back to the school. I took some ibuprofen and that just increased my stiffness. I can barely walk today. If there is anything that has helped you get through an episode, I am open to suggestions. I’ve tried stretching, walking, a steaming hot bath and nothing is touching the pain. I simply cannot miss another day of work this week.

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