Complementary Treatments
American Academy of Medical Acupuncture
4929 Wilshire Blvd., Ste. 428
Los Angeles, CA 90010
(323) 937-5514
American Association of Naturopathic Physicians
Naturopathy combines traditional medicine with other modalities, including homeopathy
4435 Wisconsin Ave. NW, Suite 403
Washington, DC 20016
(866) 538-2267
American Association of Oriental Medicine
PO Box 162340
Sacramento, CA 95816
(866) 455-7999
American Chiropractic Association
1701 Clarendon Blvd.
Arlington, VA 22209
(800) 986-4636
American Holistic Medical Association
12101 Menaul Blvd., NE, Suite C
Albuquerque, NM 87112
(505) 292-7788
American Massage Therapy Association
500 Davis St., Suite 900
Evanston, IL 60201-4695
Find a massage therapist: (888) 843-2682
American Music Therapy Association
Music Therapy uses music to address physical, emotional, cognitive, and social needs
8455 Colesville Road, Suite 1000
Silver Spring, Maryland 20910
(301) 589-3300
American Osteopathic Association
142 E. Ontario St.
Chicago, IL 60611
(800) 621-1773
American Physical Therapy Association
1111 N. Fairfax St.
Alexandria, VA 22314-1488
(800) 999-APTA
Aquatic Physical Therapy Section of the American Physical Therapy Association
7853 East Arapahoe Court, Suite 2100
Centennial, Colorado 80112-1361
(303) 694-4728, ext. 60
Aquatic Resources Network
3500 Vicksburg Ln. North #250
Plymouth, MN 55447
(715) 248-7258
Association for Applied Psychophysiology and Biofeedback
Monitoring involuntary bodily functions to gain voluntary control over those, relieving stress and chronic pain and promoting relaxation
10200 W. 44th Ave. #304
Wheat Ridge, CO 80033
(800) 477-8892
Feldenkrais Guild of North America
Individual or group instruction in ways of moving that increases ease and range of motion, coordination, and flexibility.
3611 SW Hood Ave., Suite 100
Portland, OR 97239
(866) 333-6248
Hellerwork Combination of deep-tissue bodywork, movement education, and dialogue.
Hellerwork International
National Center for Complementary and Alternative Medicine
9000 Rockville Pike
Bethesda, Maryland 20892
(888) 644-6226
National Association of Cognitive-Behavioral Therapists
CBT is a form of psychotherapy that identifies thought patterns that have negative effects, and teaches how to replace them with more positive thought patterns
PO Box 2195
Weirton, WV 26062
(800) 853-1135
American Occupational Therapy Association
Occupational therapists evaluate the impact fibromyalgia has on clients’ lives, and help clients lessen or overcome limitations at home or work
4720 Montgomery Lane
PO Box 31220
Bethesda, MD 20824-1220
(301) 652-2682
Reflexology Association of America
Reflexology stimulates specific points in the feet to affect corresponding organs or areas of the body.
PO Box 26744
Columbus, OH 43226-0744
(740) 657-1695
Reiki Council
Reiki is the laying on of hands for healing purposes
799 Roosevelt Road
Building 4, Suite 001
Glen Ellyn, IL 60137
(630) 926-5891
Worldwide Aquatic Bodywork Association
P.O. Box 889
Middletown, CA 95461
(707) 928-5860
Yoga Alliance
7801 Old Branch Avenue, Suite 400
Clinton, MD 20735
(877) 964-2255
Allsup
Allsup is a leading nationwide provider of financial and healthcare related services to people with disabilities. Founded in 1984, Allsup has helped more than 100,000 people receive their entitled Social Security Disability Insurance and Medicare benefits. Allsup employs approximately 500 professionals who deliver services directly to consumers and their families or through their employers and long-term disability insurance carriers. Mention the National Fibromyalgia Association for priority assistance.
(800) 279-4357
Disability Attorneys
The National Fibromyalgia Association is developing a list of disability attorneys who serve individuals affected by fibromyalgia. Click here to view or to add an attorney to the list.
“Ticket to Work and Self-Sufficiency”
A program run by the Social Security Administration to help people on disability get a job.
(866) 968-7842
Patient Advocate Foundation
Offers assistance to patients with issues connected to insurance, job retention, and debt or crisis matters.
700 Thimble Shoals Blvd, Suite 200
Newport News, VA 23606
(800) 532-5274
Disabled Online
Disability Rights Education and Defense Fund, Inc
2212 Sixth St.
Berkeley, CA 94710
(510) 644-2555
National Center on Physical Activity and Disability
(800) 900-8086
National Organization of Social Security Claimants’ Representatives
560 Sylvan Ave
Englewood Cliffs, NJ 07632
(800) 431-2804
Allsup - Social Security Disability Representation
Allsup is a leading nationwide provider of financial and healthcare related services to people with disabilities. Founded in 1984, Allsup has helped more than 100,000 people receive their entitled Social Security Disability Insurance and Medicare benefits. Allsup employs approximately 500 professionals who deliver services directly to consumers and their families or through their employers and long-term disability insurance carriers. For more information, visithttp://www.allsup.com/.
Caregiver Guide to Senior Health Issues
http://www.care.com/senior-care-p1142-caregiver-guide-senior-health-issues.html
Eldercare Locator
(800) 677-1116
United States ElderCare Referral Agency
1525 Mesa Verde Drive, Suite 210
Costa Mesa, California 92626
(800) 848-1008
National Council on the Aging
(202) 479-1200
Benefits Checkup
People over 55 and those on disability can find out what benefits they may be eligible for:
Social Security
Provides Medicare and Medicaid information
(800) 772-1213
Chronic Disease Fund
6900 North Vallas Parkway
Suite 200
Plano, TX 95024
(877) 968-7233
US Department of Housing and Urban Development
This department can connect you with your local Housing and Urban Development Office, which can lead you to a local housing authority that provides rental subsidies to low-income families.
451 7th Street S.W.
Washington, DC 20410
(202) 708-1112
Government Benefits
Agency for Health Care Research and Quality
Offer a booklet with suggested questions to ask about health insurance coverage, which also contains worksheets to help compare plans
(800) 358-9295
Kantor and Kantor, LLP
19839 Nordhoff St.
Northridge, CA 91324
(800) 446-7529
Legal Services Corporation
National service can provide referrals to local legal aid societies that provide legal services to low-income people
3333 K Street, NW, 3rd Floor
Washington, DC 20007-3522
(202) 295-1500
National Council on Independent Living
Advocates for people with disabilities who strive to live independently
1710 Rhode Island Ave. NW
5th Floor
Washington, DC 20036
(877) 525-3400
Patient Advocate Foundation
A pharmaceutical co-payment assistance program for insured patients suffering with chronic pain.(866) 512-3861
www.copays.org/
Needy Meds
Partnership for Prescription Assistance
Search for prescription assistance programs by state
(888) 4PPA - NOW
Lilly Cares
Program of Eli Lilly to help indigent patients without insurance. Requires no fees.
(800) 545-6962
Together RX Access
Patient assistance program for those who do not have drug coverage. Amount of assistance is dependent on total household income.
(800) 444-4106
Astra Zeneca
Foundation Patient Assistance Program
Provides medications free to qualifying
(800) 424-3727
http://www.astrazeneca-us.com/
Bridges to Access
GlaxoSmithKline’s patient assistance program for non-oncology medicines provides GSK prescription medicines to eligible low-income patients without prescription drug benefits.
(866) PATIENT
http://bridgestoaccess.gsk.com/
The Medicine Program
(866) 694-3893
Novartis
Patient assistance program
(800) 277-2254
RxHope
(877) 979-4673
Helping Patients
Lawson Healthcare Foundation
(888) 380-6337
Free Drug Card Program
Bureau of Primary Health Care
Website provides referrals to health care providers across the country
U.S. Department of Health and Human Services
Health Resources and Services Administration
Parklawn Building
5600 Fishers Lane
Rockville, Maryland 20857
(888) ASK-HRSA
Healthfinder
Resource for finding government and nonprofit health and social service information on the Internet
US Department of Health and Human Services
P.O. Box 1133
Washington, DC 20013-1133
National Institute of Arthritis and Musculoskeletal and Skin Diseases
Information Clearinghouse
1 AMS Circle
Bethesda, MD 20892-3675
(877) 22-NIAMS
National Institute of Mental Health
6001 Executive Boulevard
Room 8184, MSC 9663
Bethesda, MD 20892-9663
(866) 615-6464
American Psychiatric Association
1000 Wilson Boulevard, Suite 1825
Arlington, VA 22209-3901
(703) 907-7300
American Psychological Association
Does not offer referrals
750 First Street, NE
Washington, DC 20002-4242
National Mental Health Association
2000 Beavregard St.
6th Floor
Alexandria, VA 22311
(800) 969-NMHA
National Suicide Prevention Lifeline
1-800-273-TALK (8255)
http://www.suicidepreventionlifeline.org/
American Council for Headache Education
19 Mantua Road
Mt. Royal, NJ 08061
(800) 255-ACHE
American Autoimmune Related Diseases Association
22100 Gratiot Avenue
East Detroit, MI 48021
(586) 776-3900
American Chronic Pain Association
PO Box 850
Rocklin, CA 95677
(800) 533-3231
American Pain Society
4700 West Lake Ave.
Glenview, IL 60025-1485
(847) 375-4715
Anxiety Disorders Assn. of America
8730 Georgia Avenue, Suite 600
Silver Spring, MD 20910
(240) 485-1001
Association of Repetitive Motion Syndrome
PO Box 471973
Aurora, CO 80011
Crohn's & Colitis Foundation of America
386 Park Avenue South
17th Floor
New York, NY 10016
(800) 932-2423
Chronic Fatigue
The CFIDS Association of America
PO Box 220398
Charlotte, NC 29222-0398
(704) 365-2343
Depression and Bipolar Support Alliance
730 N. Franklin, Ste. 501
Chicago, IL 60610
(800) 826-3632
Depression and Related Affective Disorders Association
Meyer 3-181
8201 Greensboro Dr., Suite 300
McLean, VA 22102
(888) 288-1104
Ehlors-Danlos National Foundation
3200 Wilshire Blvd.
Suite 1601, South Tower
Los Angeles, California 90010
(213) 368 -3800
Endometriosis Association
8585 N. 76th Place
Milwaukee, WI 53223
(414) 355-2200
International Foundation for Functional Gastrointestinal Disorders
PO Box 170864
Milwaukee, WI 53217-8076
(888) 964-2001
International Pelvic Pain Society
(847) 517-7225
Interstitial Cystitis Association
110 N. Washington St., Ste. 340
Rockville, MD 20850
(800) HELP-ICA
Lupus Foundation of America
2000 L Street, N.W., Suite 710
Washington, DC 20036
(202) 349-1155
Lupus International
17985 Sky Park Circle, Suite J
Irvine, CA 92614
(888) 532-2322
National Headache Foundation
820 N. Orleans, Ste. 217
Chicago, IL 60610
(888) NHF-5552
National Multiple Sclerosis Society
733 Third Avenue
New York, NY 10017
(800) FIGHT-MS
National Sleep Foundation
1522 K St., NW, Suite #500
Washington DC 20005
National Vulvodynia Association
PO Box 4491
Silver Spring, MD 20914-4491
(301) 299-0775
American Reflex Sympathetic Dystrophy Hope Group
PO Box 875
Harrison, ME 04040
(207) 583-4589
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
99 Cherry St.
Milford, CT 06460
(877) 662-7737
Restless Legs Syndrome Foundation
819 Second St. SW
Rochester, MN 55902-2985
(877) INFO-RLS
Scleroderma Foundation
300 Rosewood Dr., Suite 101
Danvers, MA 01923
(800) 722-HOPE
Sjogren’s Syndrome Foundation
8120 Woodmont Ave., Suite 530
Bethesda, MD 20814
(800) 475-6473
Temporomandibular Joint Assn
PO Box 26770
Milwaukee, WI 53226-0770
(262) 432-0350
The VP Foundation (vulvar pain)
Post Office Drawer 177
Graham, North Carolina 27253
(336) 226-0704
We Move
movement disorders support
American Academy of Pain Management
13947 Mono Way, Suite A
Sonora, CA 95370
(209) 533-9744
American Academy of Pain Medicine
American Pain Foundation
201 N. Charles St., Suite 710
Baltimore, MD 21201
(888) 615-7246
North American Spine Society
22 Calendar Court, 2nd Floor
LaGrange, IL 60525
(877) 774-6337
Pain Treatment Topics
202 Shermer Road
Glenview, IL 60025
(847) 724-0862
Center Watch
Clinical Trials Listing Service
22 Thomson Place, 47F1
Boston, MA 02210-1212
(617) 856-5900
National Institutes of Health Clinical Trials
(301) 496-4000
211
For information about health and human services available in your community
dial 211 or go to www.211.org/
Family Caregiver Alliance
180 Montgomery St., Suite 1100
San Francisco, CA 94104
(415) 434-3388
National Association of Social Workers
Find a social worker in your community
750 First St., NE
Washington, DC 20002-4241
(202) 408-8600
National Family Caregivers Association
10400 Connecticut Ave., Suite #500
Kensington, MD 20895-3944
(800) 896-3650
National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004
(202) 272-2004
National Pain Foundation
300 E. Hampden, Suite 100
Englewood, CO 80113
(866) 590-7246
www.nationalpainfoundation.org/
Well Spouse Association
A support network for spousal caregivers
63 West Main Street, Suite H
Freehold, NJ 07728
(800) 838-0879
From NFMCPA
New Research - Cytokines in FM?
A possible paradigm shift study published in BMC Clinical Pathology on December 17, 2012, describes cytokine abnormalities in fibromyalgia (FM) patients compared to healthy controls. It expands the theory that significant immune-dysfunction is part of FM pathogenesis. More relevant is that this scientific study identified a blood testing method that demonstrates value as a FM diagnostic tool. Researchers used multiple methods to examine cytokine (proteins that help regulate your immune response) levels in people with fibromyalgia. Their findings demonstrated that the FM group had considerably lower cytokine concentration than the control group, which implies that cell-mediated immunity is impaired in fibromyalgia.
Continue here from February 2013 FM-CP Advocate Newsletter
Interestingly, this published study demonstrates an immunology response in people with FM which strays from the last decade of science that has pointed to abnormalities in the central nervous system. The science of neuroimmunology, which has only been around for about ten years, may hold some interesting answers that might illuminate these disparities. Neuroimmunology is the field that combines the study of the nervous system and the immune system. This area of science seeks to better understand the interaction of these two complex systems during development, homeostasis, and response to injuries. A goal of this new area of science is to further develop the understanding of the pathology of several neurological diseases, some of which have no clear cause. The study of the interactions of both the immune and nervous systems,including the physiological (study of origin) function, has stimulated the development of new pharmacological treatments for several neurological conditions, including multiple sclerosis.
Neural targets that control thermogenics (body temperature), behavior, sleep and mood can be affected by pro-inflammatory cytokines (small cell-signaling molecules) which are released by activated macrophages and monocytes during infection. The production of cytokines in the central nervous system has been detected as a result of brain injury, during viral and bacterial infections, and in neurodegenerative processes.
More From the National Institutes of Health[1]:
“Despite the brain’s status as an immune privileged site, an extensive bi-directional communication takes place between the nervous and the immune system in both health and disease. Immune cells and neuroimmune molecules such as cytokines, chemokines, and growth factors modulate brain function through multiple signaling pathways throughout the lifespan. Immunological, physiological and psychological stressors engage cytokines and other immune molecules as mediators of interactions with neuroendocrine, neuropeptide, and neurotransmitter systems. For example, brain cytokine levels increase following stress exposure, while treatments designed to alleviate stress reverse this effect.
"Neuroinflammation and neuroimmune activation have been shown to play a role in the etiology of a variety of neurological disorders such as stroke, Parkinson's and Alzheimer’s disease, multiple sclerosis, pain, and AIDS-associated dementia. However, cytokines and chemokines also modulate CNS function in the absence of overt immunological, physiological, or psychological challenges. For example, cytokines and cytokine receptor inhibitors affect cognitive and emotional processes. Recent evidence suggests that immune molecules modulate brain systems differently across the lifespan. Cytokines and chemokines regulate neurotrophins and other molecules critical to neurodevelopmental processes, and exposure to certain neuroimmune challenges early in life affects brain development. In adults, cytokines and chemokines affect synaptic plasticity and other ongoing neural processes, which may change in aging brains. Finally, interactions of immune molecules with the hypothalamic-pituitary-gonadal system indicate that sex differences are a significant factor determining the impact of neuroimmune influences on brain function and behavior."
It will be interesting to see where this new area of fibromyalgia research will lead and what kind of help it will offer patients.
[1] Function Links between the Immune System, Brain Function and Behavior
Click here to read more about neuroimmunology from the National Institutes of Health
Things Not to Say to Someone With Fibromyalgia or Chronic Fatigue Syndrome
...And what we'd like to hear instead.
By Adrienne Dellwo, About.com Guide
Updated September 12, 2012
When someone we know is sick, especially with a chronic illness, it can be hard to know what to say to them. Often, people want to appear understanding, sympathetic or helpful—only to come off hurting the feelings of the sick person.
Certain phrases really annoy a lot of us with chronic illnesses such as fibromyalgia (FMS) andchronic fatigue syndrome (ME/CFS). While they're usually said with the best of intentions, we hear them so often, and they reflect such a lack of true understanding, that they're like fingernails on a chalk board.
Some of the things in this article might sound to you like the reactions of someone who is really over-sensitive. Keep in mind that chronic illness inflicts unwanted changes on people's lives and can really do a number on their self-esteem. Someone who's had to give up activities— especially a job—may be deeply wounded by, and feel a lot of guilt over, their limitations.
Five Things NOT to Say
Here are 5 things to avoid saying to someone with FMS, ME/CFS, or other "invisible" illnesses:
- "You look great—you must be feeling better."Looks can be deceiving. It's possible, even likely, that we're just getting better about concealing how we feel, not actually feeling better. Or it might be a single good day after a month of horrible days. Either way, this comment—which may have been intended as a compliment—makes a lot of people feel misunderstood. It's a judgment made without an effort to truly learn how we're doing.
- "Let's get you out of the house. It'll give you a boost!" Believe me, most chronically ill people wouldlove to get out of the house more. If we're staying home all the time, it's likely that we're not feeling well enough to get out. Being pressured to do something we're not physically up to causes added stress, which makes us worse.
- "Are you sure you're not just depressed?" It's true that many of us are depressed, and even if we're not, the symptoms can be similar. However, depression alone can't explain the broad range of symptoms we experience, which is often several dozen. This comment discounts the validity of our physiological ailments. (Plus, depression is a very real and serious illness, so the phrase "just depressed" is never appropriate.)
- "I know how you feel; I get tired, too. " If you're so tired that you feel on the verge of complete physical, mental and emotional collapse, you might know how we feel. Otherwise, statements like that make it seem like you're trivializing an illness that's much more than being tired. If you want to appear understanding, you're better off saying something like, "I've been really exhausted lately. I don't know how you live like that all the time."
- "If you'd (exercise more/lose weight/eat a better diet/get back to work) you'd feel better." While exercise or dietary change do help some people with these conditions, the wrong changes can make us much worse. We know our bodies best, and we need to research those changes for ourselves. Losing weight is extremely difficult for someone who can't be very active, and being told to do so is hard on the self-esteem. Plus, there's no evidence that losing weight would help much anyway. When it comes to "getting back to work," again, that's something most of us would love to do but can't.
So What SHOULD You Say?
Now that you have an idea what topics to avoid, here's a look at some things that would be especially welcome by people with these conditions.
- "If you're not up to going out, we can just get together and (talk/play cards/watch a movie)."This shows that you understand the limitations of the illness and gives the person an alternative to canceling plans that may better accommodate their symptoms.
- "Let's do our grocery (or Christmas) shopping together. I'll pick you up." Shopping can be extremely tiring for us, and it can really help to have someone else there to help with things like loading and unloading the car, or trekking back across the store for a forgotten item on the other side. A really good friend will read Holiday Shopping With FMS & ME/CFS and give helpful suggestions while out and about.
- "How much are you up for today?" This shows that you understand energy levels can vary from day to day and can help your companion feel comfortable expressing his/her limitations.
- "How are things going?" This is better than asking "how do you feel?" It opens the door to all aspects of life, instead of just physical well-being. Most days, I don't feel that great, but other aspects of my life might be going really well.
- "Can I (give you a ride/help with that/etc.)?" This works better than something like, "Do you need me to...." because it shows a willingness to help without implying the person is incapable or is a burden.
If you're willing to put in the effort to understand your friend's/family member's illness and limitations, thank you! Chronic illness can be lonely, and having supportive people around us is invaluable.
Research has revealed that fibromyalgia drugs are only effective for 22 percent of patients. Twenty-one percent of patients taking medication for the debilitating syndrome have to stop due to unwanted side effects.
Fibromyalgia is a syndrome, most common in women, that is thought to cause long-term symptoms of pain and tenderness in soft tissues. Patients regularly report experiencing chronic muscle pain and fatigue which can lead to depression and insomnia.
Read more at http://www.inquisitr.com/542789/fibromyalgia-drugs-only-effective-for-22-percent/#Ik8SMtPMl068v6TW.99
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