Posts Tagged ‘Fibro’

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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Sleeping on a Cloud

September 8th, 2010

So today is my birthday, and I just happened to convince my hubby that a worthwhile birthday present would be a new mattress. My current pillow-top is sagging in the middle and the old springs just aren’t doing my Fibromyalgia flares any favors. My birthday just happens to coincide with the biggest week for mattress sales, Labor Day Weekend. I spent two days going around to several stores that were featuring half-price mattresses just to get the best deal.

Bargain shopping for a mattress is tricky. You want to make sure you are getting the best value, which does not equal the cheapest bed. I argued with my loving hubby about a bed being an investment, and he told me that it isn’t really an investment because beds depreciate in value even faster than cars. The Better Sleep Council has this to say about the matter:

Considering that you’ll probably be using your bed more than any other product you own – including your car, TV, computer or cell phone – the mattress you sleep on is one of the best cost-per-day values on the market today.1

While my husband argued that he needed a new car, I argued that I needed a good night’s sleep and that he would benefit from one too. If I tell you I spent $1,200 dollars on a mattress set, that certainly sounds frivolous. My husband could buy another clunker to drive around town with that. But he probably would only spend about an hour or two a day driving his car, when we both will hopefully be getting 8 hours of blissful sleep each night in our new bed. This works out to cost about $3 per day for the next year, which really seems like a drop in the bucket for something we will most likely be using for the next 10 years. However you choose to justify this expense, it really is a worthwhile investment to healing your body. Quality sleep is essential for Fibromyalgia sufferers.

If you have determined that you are ready to invest in your health by purchasing a quality mattress, I’m sure you are wondering by now which bed I chose. With so many different brands on the market, it was mind boggling to do research and exhausting to walk into stores and lay around in beds for two days straight. First let me discuss my research. Before I even stepped foot into a mattress store I searched Google using the keywords, Fibromyalgia and Mattress. Sure enough there are other people out there recommending specific mattresses for people with Fibro and/or Arthritis. What is hard is to discern between someone that is looking to sell you a mattress, versus another Fibromate that is just sharing information.

The Sleep Doctor has a lot to say about mattress shopping. He cautions that people shouldn’t put off buying a replacement mattress just because it is expensive and it isn’t fun. While Tempur-Pedic and Select Comfort are among the top dogs, Dr. Michael J. Breus says that what you feel most comfortable sleeping on is the most important thing.2 You really should take your own pillow and lay on each bed for a minimum of ten minutes on each side, and on your back. If you are a stomach sleeper, make sure you lay that way too. Pay attention to any pressure points and make sure that your lower back is not sagging in the bed.

The most recommended bed for Fibromyalgia was the Tempur-Pedic, or comparable memory foam bed.3 Also mentioned were air beds like the Select Comfort Sleep Number bed. While one of my coworkers said that her specific Sleep Number was difficult to find, but now that her Sleep Number bed is properly adjusted she loves it. I didn’t see any of these out at the stores to try, and I simply wasn’t going to buy a bed without spending some time laying in it. This was simply too expensive of a purchase to buy sight unseen.

I started by laying in a Sealy Posturepedic, because when I went in for my sleep study I slept great and that was the type of bed that they had in the sleep lab. I thought I wanted a pillowtop posturepedic because it was more affordable and it was something that I slept well in when I was actually being monitored for disruptive sleep patterns. I felt like this was a quality bed, but I kind of felt like the Princess and the Pea. Even though the innersprings were covered in foam or fluff, the bed felt uneven and my lower back would droop like I was laying in a hammock.

After trying out a few different brands of pillowtops, including a $3,000 overpriced Sleep to Live bed by Kingsdown, I started truly considering memory foam. I was nervous about foam because of my chemical sensitivity, but my mom has a Tempur-Pedic and I have taken a couple of great naps on her bed. I was afraid to spend that kind of money, but I believe Tempur-Pedic has some type of comfort guarentee. They have a new line called the TEMPUR-Cloud that is almost $3,000 for a King size and I made the mistake of laying in it. It really is like I imagine sleeping in heaven. For someone with Fibromyalgia, it is truly a dream come true. No pressure points and the new foam is suppose to wick away some of the heat. The foam responds really well to your movement. There is still a sinking feeling, but when you shift positions the foam springs back more quickly. One of the biggest complaints of the older Tempur-Pedic model is that it sleeps hot because the foam retains your body heat. My mom loves this feature because it helps keep her warm.

At less than half the price, I ended up choosing the Simmons Comforpedic Loft which has NxG memory foam that is also pretty responsive to your movement and also helps wick away some of your body heat. Rumor has it that a couple of employees of Tempur-Pedic left to work for Simmons and the Comforpedic was born. I actually preferred the Comforpedic to the original Tempur-Pedic. While I won’t be sleeping on a cloud, I will definitely be floating off to dreamland.

My husband had me lay on my stomach with my face in the foam to see if I had a reaction to the chemicals in the foam. I didn’t in the store, but that bed has been sitting on the floor out-gassing for lord knows how long. Hopefully I won’t have a reaction to the foam in a new bed. I’ll definitely post an update after I have slept in the bed for a week. I’m very excited about my purchase, and I can’t wait for my new bed to arrive this weekend. I only wish it could have been delivered today! Happy Birthday to me.

Further Reading

Better Sleep Guide

Buying a Mattress for Fibromyalgia

Fibromyalgia Beds

Going to the Mattresses: How to Cut through the Marketing Gimmicks of Sealy, Serta and the Rest

Knowing What to Shop for while Mattress Shopping Will Bring You Sweet Dreams

Tricks of the Trade: Shopping for a Mattress

UPDATE: See my Review of the Simmons Comforpedic

  1. Better Sleep Council []
  2. Huffington Post []
  3. Fibromyalgia Pain Relief and Memory Foam []

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Tart Cherry Juice, Fad or Cure?

May 4th, 2010
Comments Off on Tart Cherry Juice, Fad or Cure?

Tart Cherry Juice may seem to be a new fad, or to some just an old folk remedy, but science could prove it to be a cure for common ailments like arthritis and possibly Fibromyalgia. The key seems to be in the pigment of the cherries, anthocyanins, which give the cherries their color. According to Dr. Muraleedharan Nair at Michigan State University, lab tests show that these pigments give 10 times the anti-inflammatory relief of aspirin, without irritating the stomach. Plus they are also powerful antioxidants1.

These powerful antioxidants have been shown to decrease oxidative stress in healthy older men and women2. A study published in the British Journal Of Sports Medicine has shown that drinking Tart Cherry Juice decreases strength loss and pain due to exercise3.

I thought that this was most likely just another fad diet, but I picked some up from the store to try it. I drank about 8 ounces an hour before bed and I fell asleep as soon as I hit the pillow those nights. When I ran out of juice, I had a much harder time falling asleep. Sure this could be related to many factors, but maybe it has something to do with melatonin. Cherries are apparently high in melatonin, which is a hormone that helps regulate your sleep 4.

Getting a good nights sleep is often a challenge for individuals suffering from Fibromyalgia and it is important to help restore our bodies. So anything I can do to help myself get a better nights rest can be beneficial. I picked up some more tart cherry juice at the store today. I just drank some and I am getting ready for bed. I’ve had a really hard time sleeping the past two nights, so we will see how the juice helps with my sleep tonight.

  1. Underwood, Anne . “A Prescriptive Palette.” Newsweek, Dec 6, 1999, 91-92. []
  2. Traustadóttir , T. “Tart cherry juice decreases oxidative stress in healthy older men and women.” The Journal Of Nutrition 139, no. 10 (2009): []
  3. Connolly , DA. “Efficacy of a tart cherry juice blend in preventing the symptoms of muscle damage.” British Journal Of Sports Medicine 40, no. 8 (2006): 679 []
  4. []

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Good-Bye Dr. Du

April 9th, 2010

Well I went to see my neurologist, Dr. Du, yesterday and told him about my success with going gluten-free. He didn’t seem all that surprised that a food allergy or intolerance could manifest into Restless Leg Syndrome and Fibromyalgia. I told him that I have been sleeping better and have more energy since going gluten-free.

He was very pleased with my progress and said that I didn’t need to see him again unless my condition worsened for some reason. I tried to get him to explain why an allergy or food intolerance can affect the central nervous system, but all he would say is that “It just happens.” He went on to tell me that he was at a conference earlier this week about Fibromyalgia and they didn’t even mention Gluten.

I was frustrated that another doctor could not explain to me why I have Fibro. My GP is always telling me that doctors have just figured out how the heart works and it is just a pump (albeit a very important one). The human body is very intricate and there is much to be studied. It is easy to be angry with doctors, but I just think they don’t understand what is going on either. They can make educated guesses but ultimately they are trained to figure out the best way to manage our pain.

Call for Research
I read an article the other day that talked about the importance of pain management because there is no treatment for Fibromyalgia. When discussing treatments that implies that there is a cure and the medical community currently seems to believe that there is no cure for Fibromyalgia.

Obviously there needs to be more research done regarding Fibromyalgia and food intolerances. The first time I saw my allergist he told me that he was surprised that my skin tests were negative. I had no allergies. He said that it is common for people with Fibromyalgia to have a multitude of allergies. After being a month gluten free I have reduced my Fibro symptoms by half. I’ve been able to stop taking two medications and I am weening off of my Lyrica. I know I am not a doctor, but I think there might be a connection here.

Family History
While I was saying good-bye to Dr. Du I talked to him a little bit about my family background. I have a mother and a maternal grandmother that have also been diagnosed with Fibromyalgia at one point in their lives. Along with my grandma, many of her daughters have thyroid issues. One of my aunts has Crohn’s disease and has had part of her intestines removed. Of course GERD is common in my family and my grandmother has even been hospitalized for bleeding ulcers. Don’t you think they might feel better going gluten-free? I told Dr. Du I can’t convince my mother to give up her bread. He encouraged me to keep trying.

Maybe there is a relationship between all of these symptoms, but we need trained doctors to help get to the root of the problem. What we don’t need are doctors that will just give us some drugs to help with the pain and mask the problem. Luckily I seemed to have caught my food intolerance early enough that maybe I won’t have to have part of my intestines removed like my Aunt Glenda.

The Fibromyalgia conference my neurologist went to didn’t even mention Gluten. Dr. Du wasn’t surprised to hear about my success, but Gluten doesn’t even seem to be on their radar. Hopefully he will share my story with some of his colleagues and help educate his peers. What else can we do to advocate for ourselves?

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