Letters From Our Readers – Q&A Session 08-13-08

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How Can I Find a Support Group?

Q: I need to find a support group within the St. Louis, Missouri area for Chronic Fatigue/Fibromyalgia disorder. Thank you. – Karen

A: Our two front-line support group resources – ProHealth’s Support Group Listing (http://www.immunesupport.com/supportgroups) and the National Fibromyalgia Association’s Support Group Directory – failed to turn up a group in St. Louis. Since there are many local support groups that don’t register themselves in a national database, here are a few suggestions that might help you locate a group near you:

  • Call local hospitals and ask if they know of any support groups. Some groups meet in hospitals and also some hospitals keep a list of various support groups in the area.
  • Ask the doctor who is treating your FM/ME/CFS if he knows of any support groups.
  • Some local newspapers publish a weekly list of support group meetings in the area. If St. Louis doesn’t, it still can’t hurt to call the newspaper’s Health editor to see if she knows of any.
  • Call the local office of the Arthritis Foundation. They often sponsor FM support groups and some offer training for people who want to start and lead a support group. If they don’t have one, they may know of one in the area.
  • Contact other support groups in Missouri to see if they know of a group in St. Louis.
  • Ask for help finding a group on ProHealth’s ME/CFS & FM Message Board. There’s a good chance you’ll be able to connect with someone else in or near St. Louis.


Night Sweats Related to ME/CFS?

Q: I have had CFS for over 20 years. The last two or three years I have been having night sweats two or three times a night. Could this be related to CFS and does anything help? – Gerry

A: Yes, night sweats is one of many additional signs and symptoms people with ME/CFS may experience that are not part of the official definition. Night sweats can also be a side effect of several different medications. Check with your pharmacist to see if any medications you are taking could be causing them.

One product a lot of people recommend to help ease night sweats is the ChillowR pillow. It’s filled with a liquid that stays cool and can be used alone or with your favorite pillow. You can read more about it on Amazon.com.

You might also try asking others on ProHealth’s ME/CFS & FM Message Board if they have any tips for dealing with night sweats. Our search on “sweat” turned up many posts.


Switching Newsletters?

Q: I am confused – I received the Treatment & Research News – ME/CFS Edition. This is the Chronic Fatigue Syndrome newsletter, correct? I would like to receive the newsletter that pertains to Fibromyalgia. Could my address be added to that list? – Jeannie

A: We will make the change for you immediately. Often items in the ME/CFS edition pertain equally to FM patients, but you can always decide to re-subscribe to that one later if you want. It’s easy if you go to the http://www.immunesupport.com home page (upper right hand corner).

We hope that you will find something helpful or interesting in next week’s FM newsletter, and meanwhile you can access all back issues of both newsletters by going to http://www.immunesupport.com/bulletins (scroll down and click on any date).

And to find issues of our general-health e-newsletter (Wellness HealthWatch), go to http://www.prohealth.com/bulletins/index.cfm


Lymph Node Enlargement?

Q: Do you have any information on lymph node enlargement due to lymph nodes reacting to something in the body? – Mary

A: Lymphadenopathy is the enlargement of one or more lymph nodes that are typically found in the neck, axilla (under arm) or inguinal (groin) region. The majority of lymph node swelling goes undetected, but it is common to find one or more swollen nodes at the time of illness.

Lymph nodes are part of the intricate lymphatic system, which functions to get rid of unwanted wastes in the blood. It is a complex network of vessels that are closely related to the circulatory system. As the blood carries oxygen and nutrients to the tissues of the body, the lymphatic system removes unwanted impurities from the plasma to be filtered through the lymph vessels and nodes. (Plasma is the yellow-colored liquid component of blood, in which blood cells are suspended.) When the plasma is thoroughly sifted and free from contaminants, the blood is returned to the circulatory system.

Lymph nodes normally enlarge due to increased production of cells, called lymphocytes, which are used to fight any pathogens present in the lymph.

Generally, enlarged lymph nodes are caused by infection. However, they can become enlarged due to other illnesses such as connective tissue disease, endocrine disorders or cancer. Enlarged nodes will often be tender, soft and movable, indicating a non-pathological node. If a lymph node is larger than 3/8 inches in diameter, hard and fixed, or has been swollen longer than 2 weeks it is important to consult a physician. In general, however, the majority of swollen nodes are simply your body’s reaction to an infection and should not be of concern.


Q: How can I find a healthcare provider in my area that specializes in CFS? I am in the Hanover, NH area. Dartmouth-Hitchcock Medical Center is my local hospital. – Rhonda

A: As you’ve probably discovered, the Co-Cure ME/CFS & Fibromyalgia Good Doctor List doesn’t include any doctors in New Hampshire. But here are a few ideas:

1. We suggest you post your request in the Message Board string “Please Post Your Good Doctor Here!” There are hundreds of postings in the string, so include “New Hampshire” in the message title so people can search on it.

2. Search on “New Hampshire” in the ME/CFS & FM Message Board. We found the following posting from a Fibromyalgia patient dated a few years back. “To everyone who wanted to know who the great doctor is, his name is Dr. Sandeep Varma. He is originally from India and he really is great. He cares about his patients and totally understands FM without all the BS. He is affiliated with Dartmouth Hitchcock, one of the best hospitals in the US. Hugs to all – Annette G”
Note: According to our Google search, Dr. Varma’s practice is located in Clarement, NH (603/542-5801), which seems to be fairly close to Dartmouth Hitchcock, and if he doesn’t take ME/CFS patients he may know who would.

3. ProHealth’s support group database (http://www.immunesupport.com/supportgroups/) doesn’t list a group for Hanover – but does list groups in several other New Hampshire towns (one led by a physician), so you might contact one of them to see if they can recommend a doctor in the Hanover area.

4. Also, the “Friends with Fibro” website offers a collection of links to CFS support group websites by state at http://www.friendswithfibro.org/support.html. It offers a link to an FM/CFIDS/Chronic Pain support group website in New Hampshire (http://www.seacoastfms.org/) – which in turn offers a listing of support groups in 8 cities, with phone numbers. You can also post a question to this website.

We wish you luck in locating a good doctor – and hope that you will share what you learn.

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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