Fibromyalgia Pronounced "Real Disease"

Neurologic signs common with fibromyalgia

Last Updated: 2009-09-22 13:01:04 -0400 (Reuters Health)

By Michelle Rizzo
NEW YORK (Reuters Health) - Fibromyalgia isn't all in your head, new research suggests.

In a study, researchers found that people with fibromyalgia were more likely than those without the chronic pain condition to have poor balance, tingling and weakness in the arms and legs, and other "neurologic" signs and symptoms.

Fibromyalgia, a debilitating pain syndrome that affects 2 to 4 percent of the population, is characterized by chronic pain, fatigue and difficulty sleeping. It's a somewhat mysterious condition with no clear-cut cause. Many people with fibromyalgia have faced the question of whether the condition is real.

The new findings, reported in the latest issue of Arthritis and Rheumatism, support a growing body of literature suggesting that the condition is real and also support the possibility that a "neuroanatomical" cause may underlie fibromyalgia.

Dr. Nathaniel F. Watson, of the University of Washington Medicine Sleep Institute at Harborview, Seattle, and colleagues studied 166 people with fibromyalgia and 66 pain-free controls. 

All of them were examined by a neurologist who was unaware of their disease status. All study participants also completed a standard questionnaire on neurologic symptoms. 

In 27 of 29 neurological categories tested, significantly more neurologic symptoms were seen in the fibromyalgia group than in the control group, Watson and colleagues found.

The greatest differences were found for light sensitivity, or "photophobia," seen in 70 percent of fibromyalgia patients but in only 6 percent of pain-free controls; poor balance, which plagued 63 percent of fibromyalgia patients but only 4 percent of controls; and weakness and tingling in the arms or legs, seen in more than half of fibromyalgia patients but in only around 4 percent of controls.

In addition, those with fibromyalgia had greater dysfunction than controls in certain nerves in the brain. They also had more "sensory" problems, motor abnormalities and gait problems.

Within the fibromyalgia group, there were significant correlations between several neurologic signs and symptoms. For example, numbness in any part of the body or tingling in the arms or legs correlated with neurologic test findings. Poor balance, poor coordination and weakness in the arms or legs also correlated with objective findings on neurologic tests.

These observations, Watson told Reuters Health, underscore the need for "careful neurological examinations in all fibromyalgia patients, particularly those with neurological complaints."

Watson cautioned that this study does not confirm a neuroanatomical basis for fibromyalgia and tha much more work is necessary before this can be known with certainty.

SOURCE: Arthritis and Rheumatism, September 2009.

Copyright © 2009 Reuters Limited.

Fibromyalgia and CFS Rating Scale

I enrolled myself into an 6-week, online self-help course about coping with Fibromyalgia and Chronic Fatigue Syndrome. The course came with a textbook entitled, "The Patient's Guide to Chronic Fatigue Syndrome and Fibromyalgia: Take Charge Using Proven Self-Management Strategies," by Dr. Bruce Campbell. The course started yesterday and the first assignment was to read Chapter 1 of this textbook.

I'm only halfway through this chapter and have found something I want to share with you, my readers and friends who also suffer from these debilitating disorders: the rating scale.

Everyone with Fibromyalgia and/or CFS has different circumstances and different levels of pain and abilities. Dr. Campbell says, "To get an idea of how your situation compares to others, place yourself on the CFS/Fibromyalgia Rating Scale."

Rating Scale

100 Fully recovered. Normal activity with no symptoms.

90  Normal activity level with mild symptoms at times.

80  Near normal activity level with some symptoms.

70  Able to work full time, but with difficulty. Mostly mild symptoms.

60  Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms.

50  Able to do about 4-5 hours a day of work or similar at home. Daily rests required. Symptoms mostly moderate.

40  Able to leave house every day. Moderate symptoms on average. Able to do about 3-4 hours a day of work or activity like housework, shopping, using computer.

30  Able to leave house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work or activity like housework, shopping, using computer.

20  Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less a day.

10  Mostly bedridden. Severe symptoms.

0 Bedridden constantly. Unable to care for self.

"If there is a discrepancy between your score based on activity level and your score based on symptoms, rate yourself using the severity of your symptoms." So sayeth Dr. Campbell.

Considering my activity level and symptoms, I am currently about a 25. I have been as low as 10 and as high as 70 for activity (with a 30 for symptoms at the same time).

With the help of this course, I am hoping to get to a 40 or 50. Of course, 100 would be ideal but I want to be realistic here!

As I go along in this course, I will share things I learn in an effort to help all of you.

Gentle hugs,

Jessica

CFIDS & Fibromyalgia Introductory Self Help Course

Update: Getting Help With Prescription Costs

The cost of prescription medication is astronomical, even if you do have health insurance. However, because many Fibromyalgia sufferers are unable to work, a lot of us are left uninsured. Because I am one of those unfortunate uninsured souls, I have been conducting an exhaustive search of companies and agencies that offer help in paying for my medication. Being on a fixed income with my Social Security Disability, I don’t want to spend my whole check on medication when the mortgage, car payment, utility payments, etc still need to be paid on a monthly basis. As my 21-year old son adequately puts it, “Being a responsible adult sucks!”

Regardless, it’s something we all have to do. So I have compiled a list of the companies and agencies I have found that offer assistance in paying for medications:

Needy Meds: NeedyMeds.org has information on medicine and healthcare assistance programs. They also offer a FREE drug discount card to take to the pharmacy and receive up to 70% off your medication costs. I have found it to be a one-stop shop to find medicine assistance programs. They also have healthcare assistance programs listed on this site. If I find more of the same, I'll post them in another blog.

Patient Assistance: Another free service. Sign up, enter in ALL your prescriptions, and the site will find assistance programs and coupons for the medications you entered. They also offer a FREE drug discount card to use when picking up your prescriptions!

Together Rx: A public service program created and sponsored by a group of some of the world’s largest pharmaceutical companies gives you a FREE prescription-savings card for eligible residents of the United States and Puerto Rico who have no prescription drug coverage. Most cardholders save 25%–40%* on prescription medicines and products. (FYI: I was told by the pharmacy tech that this one gave the highest discounts.)

Rx Assist: "Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need."

Partnership for Prescription Assistance: "Helps qualifying patients without prescription drug coverage get the medicines they need through the program that is right for them. Many will get their medications free or nearly free."

Free Rx Plus: "Free For All® Inc. is dedicated to helping you control your healthcare costs we have discounted programs, providing FREE access to Prescription Medications, Imaging Service and Lab."

Dispensary of Hope: "A not-for-profit network of dispensing sites, sourcing partners and financial partners that assist people without prescription drug coverage. The network provides short-term and long-term assistance to those under 200 percent of the poverty line. Some estimates say that nearly 10 percent of our nation's population lives in this bracket every day."

Walgreens Prescription Savings Club: I signed up for this one as soon as I lost my health insurance. It has saved me at least 50% of my medication costs! There is an annual fee of $20 to $35, however. I will updating this blog post regularly with names and URLs of any new programs I find. They are also being added to my "Links" section on the right side of this page.

In case you were wondering if these actually work, they really do! I had to have four of my prescriptions refilled today. Because I don't have insurance, they would have cost me somewhere around $600 or more. Using the Walgreens Prescription Savings Club and every printable discount card on the sites listed above (and the one sent to me by Together Rx), I only had to pay $116 for my medication. There is a way to get your prescriptions for free, if you are willing to complete the paperwork/have your doctor complete the paper, and send it in. There aren't too many hoops to jump through, but it is definitely worth it. I'll be working on that next and will let you all know how it works and how long it takes to get the medication.

If anybody else has used any of these programs, please let us know!

Gentle Hugs and save a bundle!

Jessica

Love, Understanding, and Support

I have lost many friends since developing Fibromyalgia. I don’t know why they have chosen to abandon me in my time of need, because they did not tell me. I can only assume it was because being a friend to a chronically ill person is difficult. But it doesn’t have to be! I don’t ask for much; just your love, understanding, and support. 

It’s ok to ask me how I’m doing. However, I'm not going to lie and say I feel "fine" just to make you feel better.  I'm not fine. I don’t feel fine. I’m not doing fine. I hurt everywhere, I can’t sleep, and it depresses me. But it’s still ok to ask me, because it shows me that you care.

Please, please don't ask me if I'm getting better. Once I figure out how to manage my pain and other symptoms, the entire world will be the second to know. Until then, everything changes from day to day, minute to minute, even second to second. It's all about learning how to manage the pain and other symptoms when outside stressors, the weather, and sometimes nothing at all can change where it hurts, how it hurts, and how much it hurts. 

I beg of you not to tell me that I need to exercise more or to just “walk it off.” I do what I can – light stretching, moving around, and now even water aerobics. It’s excruciatingly painful. Unless you can feel my pain and understand exactly how my body reacts to every movement, unless you have Fibromyalgia as well as the myriad of spinal conditions from which I suffer, unless you are me, you have no idea what will make me feel better. My son does the best he can in this area, but he doesn’t tell me what I should do to feel better. He asks if there is anything that will help – “Will a bath help?” “Will an ice pack help?” “Will your heating pad help?” “Will your TENS unit help?”

I'm not asking for your pity. I'm asking for your understanding and compassion. If you really want to help me, just talk to me, make me laugh, focus on my abilities instead of my disabilities. If I need to vent, just listen (and it helps to validate my ventings). There is no right thing to say. In fact, more often than not there is nothing that can be said to make things right, make me feel better physically, or change my life or perspective.  But one happy or funny moment could change my day. However, saying nothing at all, not even trying, can hurt me deeply. I am, after all, human.

If I'm crying, it's still ok to talk to me. I don't cry (much) from the pain. I mostly cry because I'm stressed out, exhausted, overwhelmed, angry, feeling emotional, or just plain frustrated. Sometimes it's just one remark that sends me over the edge. At any rate, I cannot control this any more than I can control the weather. Again, I only ask for your understanding and compassion.

In short, don't avoid me because you don't want to deal with my issues. I won't force them on you and, for the most part, won't even mention them until you ask. Unless you're my Momma. I seem to unload all my pain and symptoms onto my Momma because she'll actually listen to me and not judge.

Which brings me to my final rant: don't judge me. I don't have control over my symptoms, which includes my inability to remember what I need to do as well as function as a normal person.

Keep in mind that Fibromyalgia is incurable. And ask anybody who suffers from FMS and they will tell you that it is, for the most part, resistant to medications. If I had to list the number of medications I have to take in order to function (and I use that term lightly), you would be shocked. But, please, don’t tell me that I take too much medication. I have ONE doctor prescribing this medication to me, we review my prescriptions every time I see him, and, as he spent years in medical school to become a doctor, I trust his opinion. Leave my medications to him, as he knows what he’s doing and has my best interests at heart. 

I can understand that maybe some feel FMS is not such a big deal. After all, it's not cancer. It's not heart disease. So, it's not considered fatal by those standards. However, there are people who suffer from FMS who consider suicide as their only option for relief. Dr. Jack Kavorkian assisted suicide in Fibromyalgia patients. People who suffer from Fibromyalgia feel helpless, hopeless, and unable to obtain any relief from pain and the myriad of other debilitating symptoms associated with FMS (which stands for FibroMyalgia Syndrome). So, it is not life-threatening by the classic definition, but don't say this to fibro sufferers. This is not a harmless disease. 

While people who do not suffer from Fibromyalgia, Chronic Fatigue Syndrome, scoliosis, or any other invisible illness may have a lot of advice for those of us who do, we ask that you, unless you are a doctor or pain management specialist in the treatment of these diseases and disorders, please keep it to yourself. We are doing the best we can to manage with what we are given. We don’t want your advice; we don’t want your pity. We want your love, your understanding, your company, and your support.

Invisible Illness Anthem?

Thank you to Angel, who posted this in her blog "Fibromyalgia Journal." People who suffer from an invisible illnesss, such as Fibromyalgia, Chronic Fatigue Syndrome, Lupus, and the like, deserve to have an anthem that speaks to the very heart of what we are feeling.

I second the nomination of having "Unwell", by Matchbox Twenty, as our Invisible Illness Anthem.

Unwell - Matchbox 20

You'll have to click on the "Play full song here" link to hear it all. And you really need to hear it all!

Gentle hugs and rock on!

Jessica

The Funny Thing About Fibromyalgia...

Following are some things I've said on Twitter regarding Fibromyalgia, Fibro Fog (not to be confused with Fibro Blog), and other things related to my condition and situation. My doctor always tells me, "At least you haven't lost your sense of humor!" It's the one part of the "old me" that I've been trying to hold on to. I mean, if you can't laugh at yourself...ok, totally lost that train of thought. I'm not as funny as I used to be, but I'm working on it. 

• You know you have fibro fog when you stare at the On/Off button of your heating pad, trying to remember how to turn it on.
  
  
• I don't know if I slept so much as was knocked unconscious by pain.
  
  
• You know you have fibro fog when you gently stretch, close your eyes...then freak out because you think the lights just went out.
  
  
• Keeping myself occupied by playing Scrabble on my DS. The only words I can come up with are like "doh" and "ow" and "hurt" and the like.
  
  
• Massage therapist: "You're going to be sore tomorrow." Me: "I'm sore every day."
  
  
• PSA: Do not exfoliate while on pain meds. I almost lost my nose in a freak sloughing accident.
  
  
• Feeling good & comfy. It's a nice feeling, but must resist the urge to do something stupid that will aggravate the pain...like clean!
  
  
• You know you have fibromyalgia when you walk...and your elbow hurts.
  
  
• Even in my dreams, I'm sleep deprived!
  
  
• You know you have fibro fog when you try to turn your computer on with the TV remote, and the TV on with your cell phone!
  
  
• I don't care what killed Michael Jackson. I have my own problems.
  
  
• SSA disability approved. Seems like a good enough reason to no longer aspire to anything.
  
  
• Am I the only person who can seriously hurt herself by patting a pillow?
  
  
• Long-term disability from work was approved today based solely on depression. FMS "not disabling". If they only knew!
  

In all fairness, I got the idea from Adrienne Dellwo's Fibromyalgia and CFS Blog on About.com. Laughter is supposed to be the best medicine, right?

Gentle hugs and have a good laugh,

Jessica

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are Fibromyalgia, Chronic Fatigue Syndrome, and scoliosis in my neck. And I had a double-level spinal fusion at L4-L5-S1.

2. I was diagnosed in the year: Spondylolisthesis: 1993; Scoliosis and Fibromyalgia (as well as a hematoma on my T2 vertebrae): 2007; CFS: I've always just known.

3. But I had symptoms since: CFS started when I was a teenager, severe back pain started when I was 23 (spondylolisthesis), spinal fusion in 2003, car accident in 2007, FMS diagnosed in late 2007.

4. The biggest adjustment I’ve had to make is that I can't do the things I used to do.

5. Most people assume that I'm blowing this out of proportion, or that if I "just exercise" I would get better.

6. The hardest part about mornings are waking up to pain, stiffness, and another day of the same.

7. My favorite medical TV show is House, of course!

8. A gadget I couldn’t live without is my TENS unit. If you have back pain, I highly recommend you getting one!

9. The hardest part about nights are not being able to sleep because of the pain, or having bad dreams when I do sleep.

10. Each day I take approximately 25 pills & vitamins.

11. Regarding alternative treatments, I am open to it if it works.

12. If I had to choose between an invisible illness or visible I would choose the one from which I would experience less pain

13. Regarding working and career: I am currently unable to work because I can't sit up due to severe lower back, hip, and leg pain.

14. People would be surprised to know that I used to be very active; I was a hard worker; I excelled in college; I'm close to earning a Master of Arts in Education; I was fiercely independent.

15. The hardest thing to accept about my new reality has been that I can no longer do the things I used to do, the things I want to do, the things I need to do.

16. Something I never thought I could do with my illness that I did was take road trips to Dallas, go to hockey games, and still be able to have fun.

17. The commercials about my illness are a joke!

18. Something I really miss doing since I was diagnosed is going to school and feeling well.

19. It was really hard to have to give up my life.

20. A new hobby I have taken up since my diagnosis is researching my illness.

21. If I could have one day of feeling normal again I would enjoy it to the fullest.

22. My illness has taught me to be mindful of my limitations.

23. Want to know a secret? Things people say that gets under my skin are "you should exercise more" or "walk it off".

24. But I love it when people understand and accept my limitation and don't try to fix me.

25. My favorite motto, scripture, quote that gets me through tough times is: When someone I love tells me, "I love you."

26. When someone is diagnosed I’d like to tell them to research every aspect of their illness, and to take that research to their doctor. If your doctor does not allow you to be an active participant in deciding on treatments, get a new doctor.

27. Something that has surprised me about living with an illness is how people will abandon their friendships with you just because they don't know how to handle it.

28. The nicest thing someone did for me when I wasn’t feeling well was made me dinner and brought it over.

29. I’m involved with Invisible Illness Week because I may not look sick, but I am sick.

30. The fact that you read this list makes me feel like someone is listening.