From Our Readers – Q&A Session 10-22-08

Swollen Glands, FM & Lyme?

Q: I wake up each day with swollen glands the size of golfballs. The back of my tongue is sore too. I have FMS & “had” Lyme disease for 13 years according to my doctor. Could you tell me why this happens? – wendunn

A: Typically, the term “swollen glands” refers to enlarged lymph nodes. Actually, the lymph nodes are not glands at all. They are a compilation of white blood cells that are found in different areas throughout the body.

When there is an infection in the body, the immune system responds by increasing the number of white blood cells in the lymph nodes. These additional cells cause the nodes to swell and sometimes become painful.

One of the earliest signs of Lyme disease can be flu-like symptoms, such as fatigue, headache, chills, muscle aches and swollen lymph nodes. If the infection is treated with antibiotics, then typically the symptoms will resolve in a few weeks. However, if the infection goes untreated, the symptoms may spread to other parts of the body and cause headaches, joint stiffness, or numbness and tingling to the hands and feet that could last for many years.

In the neck, there can be other reasons for swelling, such as with salivary glands in front of the ears and under the jaw or thyroid gland at the front of the neck. These changes can occur because of allergies, infection or even malfunction of the thyroid gland. Although your symptoms may be caused by the Lyme infection, it is more likely that your immune system is reacting to another kind of irritant that is causing an increase in white blood cells. Consult with your doctor to make sure that the cause of the swelling is investigated so that a solution to your symptom may be found.


D-ribose & the Glycemic Level?

Q: Since D-Ribose is a sugar, does it raise the glycemic level in the blood or is it metabolized by the muscles totally?

A: Ribose is a simple sugar that is used by all the body’s cells for energy production. Ribose has been shown to improve heart function and reduce stress on the cardiovascular system after strenuous activity. D-ribose is a 5 carbon sugar, molecularly different from glucose, the 6-carbon sugar.

Glucose and other 6 carbon sugars are used as fuel for the cells and do increase the amount of sugar in the blood. D-ribose is used to synthesize energy in the body and has not been shown to have a significant effect on raising the blood sugar.

However, there have been reports that large doses of ribose can actually lower the blood glucose significantly. As with any new supplement, if you are a diabetic or are prone to hyperglycemia, it is important to check your blood glucose levels after starting the new supplement as well as consulting your physician.


Functioning in the AM?

Q: I have fibro and CFS and I simply do not function physically or cognitively when I get up before noon…. What might explain this, and is there anything that I can do about being unable to function in the morning? – Tammie

A: You’re not alone. This seems to be a common problem with fibromyalgia patients. Many people with FM feel like their internal clocks are backward – they feel best in the middle of the night and worst early in the morning. Since people with FM and ME/CFS do not get quality sleep, it’s not surprising they don’t function well in the mornings.

Most sleep experts recommend practicing good sleep hygiene, including going to bed and getting up at the same time every day – regardless how you feel. They say in time your body will adjust to the new schedule. You might want to talk to your doctor about having a sleep study done to see if there’s anything they can do to help improve the quality of your sleep.

For more about how to improve your sleep, read “Correcting Disordered Sleep in CFS” or an article featured in this issue of FM HealthWatch,
“Reset Your Disrupted Internal Clock Naturally – Using a Dawn-Dusk Simulator.”


Cymbalta for FM?

Q: Is Cymbalta helpful for fibromyalgia? I live in the UK and have tried all sorts of different drugs. I am stuck, as the pain at night stops me sleeping and the fatigue stops me doing much at all, so I can’t even begin to pace and improve… HELP!!! – Sally.

A: Cymbalta is the second drug in the U.S. to receive FDA approval for the treatment of fibromyalgia. In its most recent clinical trial for treating FM, a little more than half of the participants taking Cymbalta reported a 30 percent or more improvement in pain and approximately 65 percent said they felt better overall. As is true with most FM treatments, some people who take Cymbalta think it’s wonderful and say it has changed their lives; others report little or no effect; and still others experience significant side effects. Unfortunately, the only way to know whether or not it will help you is to try it. (This week the European Union’s equivalent of the FDA declined to approve Cymbalta for treatment of FM.)


What is Milnacipran?

Q: Have you heard of the drug milnacipran? – Glenda

A: Milnacipran is in line to hopefully be the third drug to receive FDA approval for the treatment of fibromyalgia. It is a selective serotonin and norepinephrine reuptake inhibitor that is being used in a number of other countries but has not yet received FDA approval for use in the U.S. The FDA advised Forest Laboratories and Cypress Biosciences, manufacturers of milnacipran, that it was not able to take final action by the scheduled action date of October 18, 2008. The FDA indicated that a clinical data question related to the new drug application submission required confirmation, and said that their assessment could be completed in a matter of weeks.


FM Physical Function Questionnaire?

Q: I am interested in finding a copy of the original online self-report questionnaire for physical function for FM quoted in results based articles. Do you have access to a copy? I have not been able to locate it. – Gerri

A: The entire survey questionnaire with 121 questions (questions 52 to 63 on physical ability impact) was posted on the National Fibromyalgia Association’s website on October 12, 2005, and was completed by more than 2,500 site visitors over a period of 3 days. This initial article summarizing all the survey results ( included a footnote (#18) that originally offered a link to the questionnaire, but the link doesn’t work now.

The text on physical ability said:

“Chronic pain, fatigue stiffness, and other FM-associated symptoms frequently impact on an individual’s functional capabilities. Survey participants responded to the question: “even if you did not do the following activities, please indicate what you think your ability to do them during the past week would be?” The percentage of responders who indicated that they would have no difficulty performing each task was as follows: normal activities of daily living (65%); walking 2 blocks (45%); climbing stairs (38%); shopping (34%); light household duties (e.g., cooking/dusting) (32%); lifting or carrying 10 pounds (30%); walking half a mile (27%); walking 1 mile (18%); lifting or carrying 25 pounds (8%); heavy household duties (e.g., vacuuming/scrubbing) (7%); and strenuous recreational activity (hiking/biking) (3%). The respondents were nearly equally divided regarding their ability to maintain gainful employment. Those who were still working felt that their symptoms compromised their ability to be productive due to frequent absences and reduced work hours. Approximately 20% of the respondents had filed some form of disability claim and 6% received workman’s compensation.”

The original questionnaire was developed by and belongs to the National Fibromyalgia Association. You would have to talk to them about the possibility of getting a copy. You can call them at 714-921-0150 or e-mail

Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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One thought on “From Our Readers – Q&A Session 10-22-08”

  1. Sandy10m says:

    I also had a big problem with quality sleep and would not be functioning at all without herbal help. Some people respond favorably to melatonin, others (like me) do not. There are several herbal sleep preparations that you can try to see what works for you. Overall, I look for preparations with the USP certification (for quality control) and find good results with Jarrow products.

    L-Arginine and L-Ornithine are two amino acids that help the brain make the necessary neurotransmitters and hormones for quality sleep. They are usually taken in 2:1 amounts and usually come together in the same capsule. Start with one and see how you do. Then try two, etc., until you either reach 4 or you find you are sleeping well. If you get to 4, it’s probably not working for you.

    GABA is another neurotransmitter that you can take directly. I used to take it with 5-HTP (serotonin precursor), and the combination worked great. Again, try one of each and see how you do. Work your way up to the maximum label dosage, if needed. I used to take 1 GABA and 3 of the 5-HTP.

    The one I am taking now is by far the best one for me at this stage. It is St John’s Wort (SJW, another herb that works with serotonin as an SSRI), and I take 450-750 mg per night and get really sound sleep without any side effects waking up.

    Sleep hygiene is ABSOLUTELY key. I go to bed every night at 11 PM and wake up every morning at 7 AM. If I had a really good night’s sleep, I will wake up before my alarm around 6:30 AM. Then I get up and start my day early, happy to have the extra 30 minutes. Good luck everyone!

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