Day to Day Life with Fibromyalgia

Definition of Fibromyalgia

Fibromyalgia is known by chronic widespread pain. No one knows what causes it. But it is believed to be from psychological, genetic, neurobiological, and environmental factors. Touch points are an important part of the diagnosis for fibromyalgia. A doctor can diagnose fibromyalgia without any touch points or with just a few touch points identified.

Everyone has an opinion of what you should do when you have fibromyalgia. You have to find your own toolbox of techniques, medication, and strategies that help. Doctors, nurses, therapists, and psychiatrist can help but only you will know what relieves or even lessens your pain.

Questions & Answers

How bad is my fibromyalgia?

Pain is typically rated on a 10 point scale by most health practitioners. This give them an idea of your level of pain. In addition many doctors make a judgement on how severe your fibromyalgia by how many touch points are actively hurting.

Strategies

Exercise may help people with fibromyalgia. The tendency is to want to stop because you are in so much pain. Starting or continuing to walk helps you stay limber, keep your weight down and reduces stress. If you are accustomed to more strenuous exercise you should consult your doctor but probably can continue. Moving what you can is a good strategy.

Do you have fibromyalgia?

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Environmental Factors vs. Family Tree

Doctors believe that there are environmental triggers to Fibromyalgia. Some people report stress triggers more pain. Other people report the weather triggers pain. Winter and cold weather is sometimes the culprit.

Who in a family will get active fibromyalgia and who won’t is anyone’s guess. Evidence shows more women than men get fibromyalgia. A few men do get the disease as well. There is also evidence to show that fibromyalgia shows up in families. When questioned, women can usually remember their mother, grandmother, and aunts which had symptoms even though no one knew what it was.

Famous People with Fibromyalgia

Susan Flannery, actress

Rosie Hamlin, singer

Sinead O'Conner, singer

Michael James Hastings, actor

Andrea Cooper, graphic designer

AJ Langer, actress

People who probably had fibromyalgia:

Florence Nightingale

Charles Darwin

Frida Kahlo

Finding Health Care Professionals

Unfortunately many people who have fibromyalgia also have co-occuring disorders. There are several strategies you can use to find doctors and other professionals to work with fibromyalgia. When you call any health care professional’s office it is considered reasonable for you to ask questions. You can gage their experience by asking how long he has worked with patients who have fibromyalgia. You should also ask how many patients with fibromyalgia he typically sees in a week or month.

There are several sites online that can tell you if there is a doctor locally or close by that works with this diagnosis. Reading and staying current on your diagnosis will help too. Whether looking online or on printed materials you will gain useful information. You will also find names of professionals and organizations that can help in your search.

You should start to develop a circle of support around your health care. If you have several diagnoses you will have even more people in your circle of support.

Quick Tip

You get to be the one to remind all of your health care professionals that you have fibromyalgia. Anything any one of them prescribe should take this diagnosis into account. You are the hub of your health care circle.

There Is No Cure For Fibromyalgia

Since there is no cure for fibromyalgia you will need to include many strategies and techniques in your care. There may be one treatment or medication that helps. More often it takes a combination of treatments and medications to help you feel better.

Sometimes it takes a while for what you are doing to work. Generally you should try a medication or strategy for a month or two before you give up. Even though it doesn’t work this time or in this combination something may work later.

Medications may be over the counter or prescription medications. They can be anti-inflammatories or pain medications. Surprisingly anti-depressants are prescribed successfully for the pain as well. Topical medications can also be over the counter or prescription. They might be creams, ointments, or even patches.

Are you

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Strategies

Find a support group. They can be invaluable in finding people that understand. The other benefit is finding people who know health care professionals who can help you. Seeing another person cope successfully is so important.

How Will I Afford This

First make sure health care professionals know you are trying to live on a budget. Ask for samples of new medication. Several prescription medications that are used to help people with fibromyalgia have programs to help with the cost.

If you are looking for professionals and do not have insurance check to see if your closest university has any free clinics. At times there are other clinics not associated with universities which may have free clinics for the ‘working poor’. This may help you find someone who can help.

Some people may qualify for their state’s Medicaid program. Occasionally regular doctor’s offices may take pro bono patients. You have to ask. It’s better to ask in writing. This can work with physical therapists and counseling offices too.

Quick Tip

Make sure all of your doctors know about the medications you get or are trying.

Comments 42 comments

sarifearnbd profile image

sarifearnbd 3 years ago from Bangladesh

Thank you for this very informative and comprehensive article. I have Fibromyalgia and the last 3 years it has gotten quite severe and my walking ability is compromised. Just too darn painful. I do appreciate your work on this article. I will be referring people to it. Thanks.


cloverleaffarm profile image

cloverleaffarm 3 years ago from The Hamlet of Effingham

Great hub. I wrote a hub on healing fibro pain naturally, and it has done wonders for many. Check it out. Voted up.


Gcrhoads64 profile image

Gcrhoads64 3 years ago from North Dakota

I have heard of fibromyalgia, but wasn't sure what it was. Very informative article.


Julia Schopick 3 years ago

I was glad to read this post about fibromyalgia, and thought your readers would be interested in learning about a time-tested, non-toxic treatment that has been found to be effective for treating the pain associated with fibromyalgia. It’s called Low Dose Naltrexone (LDN). I first learned about this low-cost, non-toxic, low-dose, off-label drug, which has been used by many people with autoimmune diseases since the mid-1980s, while writing my book ("HONEST MEDICINE: Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases"). I was so impressed by LDN that I decided to feature it in my book. LDN has been found to be effective for many people with Fibromyalgia. A study conducted by researchers at Stanford University in California found LDN to be effective at decreasing pain in Fibromyalgia patients: http://www.ncbi.nlm.nih.gov/pubmed/19453963 (“Fibromyalgia symptoms are reduced by low-dose naltrexone: a pilot study”). I hope you will find this treatment to be of interest. Thanks so much! Julia Schopick (HonestMedicine.com)


AliciaC profile image

AliciaC 3 years ago from British Columbia, Canada

Thank you for the information, mylindaelliot. My sister has fibromyalgia, so I like to read about the disorder.


CozyPozy profile image

CozyPozy 3 years ago from USA

One of my friends (and her mother) have this. While her mother takes pain pills all the time, she has opted for exercise. But it's tough!


billybuc profile image

billybuc 3 years ago from Olympia, WA

I have heard of it, but I know no one who has it and my knowledge of it is quite limited. Thank you for the education.


HendrikDB profile image

HendrikDB 3 years ago

Thanks! Also my first time to hear about this.


DJ Anderson 3 years ago

Hello, Mylinda,

I have had Fibromyalgia for over 15 years. Lyrica, Cymbaltia and a handful of other medications have been my saving grace. Emotional

flare ups can send me into a downward spiral. Learning to live with pain is no easy feat. My doctor will not send me down the pain pill

entrapment, although there are days I would love to have something

to take the pain away.

You have done a wonderful job with your hub.

Keep writing!!!!

DJ.


kidscrafts profile image

kidscrafts 3 years ago from Ottawa, Canada

Thank you for sharing your article about fibromyalgia.

I don't know if you are familiar with this but it seems that Bowen treatments can help with fibromyalgia. It's possible to find more information about it on the internet. The other thing is to find a competent Bowen specialist.

The other thing that I know is that sometimes doctors diagnose the symptoms as fibromyalgia and in fact it can be lyme disease because the symptoms are so close.

Scientists and doctors still have a long way to go to be able to help correctly people with some disease unfortunately.

Thanks for sharing!


DJ Anderson 3 years ago

Hello, kidscraft,

Thank you for the information on Bowen Therapy. I checked it out on line. The photos showing touch therapy made me cringe with fear of possible pain. However, I did a search in my area and there are no certified Bowen Therapist anywhere near me. Most were located in Australia.

I have gone to chiropractors most of my adult life for degenerative

disc disease. I believe, no, I know, they have helped me through

many rough times.

When I was 38 yrs. old, I was diagnosed with Epstein Barr Viral Syndrome. Epstein Barr is not supposed to be painful, but I had

incredible pain. I believe the fibromyalgia came along with the Epstein Barr. At that time, no one had heard of fibromyalgia.

There is a list of health issues that accompanies fibromyalgia. And, wouldn't you know, I have most all of them. One by one, the issues have been followed up by specialist of the field. In the end, they raise their shoulders and say, 'Sorry, this goes along with the diagnose of fibromyalgia.'

Thank you for your suggestions. I may continue to search for a

Bowen specialist.

DJ.


mylindaelliott profile image

mylindaelliott 3 years ago from Louisiana Author

I know several people who have Lyme disease and at one point thought they had fibromyalgia. Fortunately have extended bout with antibiotics they are disease and pain free. No such luck for myself. Thanks for the information.


kidscrafts profile image

kidscrafts 3 years ago from Ottawa, Canada

DJ Anderson

I know that in the Ottawa area, we have several specialist who can help people with Bowen. Often those people are naturophatic doctors as well. I think it's slowly becoming better known.

MylindaElliot

I hope that one day someone will be able to help you! Good luck to you!


KoffeeKlatch Gals profile image

KoffeeKlatch Gals 3 years ago from Sunny Florida

Fibromyalgia is a painful and can be a debilitating disease. I agree when you say that keeping yourself moving is a help. Great information.


lumen2light profile image

lumen2light 3 years ago from Aberdeenshire, Scotland

Thank you for sharing this, a friend of mine from a few years back used to get stressed out all of the time and then would end up in bed for a few days due to the pain in his body. I do not know if he had Fibromyalgia, but his Doctor put him in touch with someone who taught meditation. Through meditation he managed to control his stress levels and reduced the pain he was feeling.


WalterPoon profile image

WalterPoon 3 years ago from Malaysia

The word "pain" scares me. I had slipped disc and the chronic pain was caused merely by the disc pressing on the spinal nerves but it creates a real havoc to my life. I was on codeine until I found an acupuncture who could relieve my pain instantly just with one needle! Thank God, I found him because he is the only one in my hometown who could do that. There are many hocus-pocus acupuncturists around.


MrsBrownsParlour profile image

MrsBrownsParlour 3 years ago from Chicagoland, Illinois

Very helpful and compassionate article! One of my family members suffers from fibromyalgia so I have become familiar with it. All of your information sounded right on target. Voted up! ~Lurana


hawaiianodysseus profile image

hawaiianodysseus 3 years ago from Southeast Washington state

My beloved wife suffers from this, too. She's proactive when it comes to doing research and gleaning information from various sources, and as a spouse, I'm here to support and love her in every way possible, including learning more about this mysterious ailment from excellent articles such as yours. Thank you so much for sharing this! Aloha, and have a wonderful weekend!

~Joe


ocfireflies profile image

ocfireflies 3 years ago from North Carolina

Great information presented in a user-friendly way--I know a lady who suffers from this disease, and so I appreciate gaining a better understanding. V+

Kim


Jackie Lynnley profile image

Jackie Lynnley 3 years ago from The Beautiful South

Thanks for a very informative article. Very mysterious disease. Hope they find a cause and cure very soon.


SandCastles 3 years ago

A very good article. I knew a lady who had this and she said heat helps (hot water bottle or a heating pad).


Mary McShane profile image

Mary McShane 3 years ago from Fort Lauderdale, Florida

I have a sister with fibromyalgia and she takes 4mg low dose naltrexone that she can only get from Skip's Pharmacy here in Florida. It is the only pharmacy she found who will put it in 4 mg capsules because it has to be broken down from 50mg dose. It is tedious and because the public demand is so low and the the drug is not so expensive, many pharmacies won't do it. This pharmacy mails prescriptions all over the country to people who are in search of LDN. Finding a doctor to write the prescription was hard, but when she contacted the pharmacy, they put her in touch with a doctor. She made an appt and about two months later, after testing she was given a prescription. It is now 6 years later and she is relatively still pain free as long as she takes the LDN nightly. From my years in medicine, I've seen remarkable results from patients who take LDN. I hope you can do a little research on it and see if it can work for you. Good hub, voted up and useful.


Mary McShane profile image

Mary McShane 3 years ago from Fort Lauderdale, Florida

http://www.lowdosenaltrexone.org/index.htm#How_can...

That's the link of all the diseases and disorders that LDN is used for and a list of pharmacies all over the world who compound LDN


vespawoolf profile image

vespawoolf 2 years ago from Peru, South America

I have friends who have fibromyalgia. It seems more common nowadays, or maybe just more widely recognized. I appreciate your tips on how to treat it on a budget. This is very useful. Voted up and shared. Thank you for sharing.


tsmog profile image

tsmog 2 years ago from Escondido, CA

A very well written and presented article mylindaelliott. It is appreciated as I have a very dear friend with this affliction and know of her struggles from day to day. It is ominous in a sense, yet as you share personal effort combined with science offers help. Maybe not cure, yet relief enough to function at higher levels while contributing more in some means or way as this article is an example of. Thank you for sharing this delightful article. I will be sharing with that friend and more.

tim


CraftytotheCore profile image

CraftytotheCore 2 years ago

I have an aunt with fibromyalgia. My grandfather suffered from polyomialgia (sp) at one point in his life.

I remember years ago when it wasn't recognized as an actual disease. People thought it was just something that was imagined. But it is definitely real. The pain is definitely real. My aunt went through a lot of therapy for hers including water therapy.


Minnetonka Twin profile image

Minnetonka Twin 2 years ago from Minnesota

An incredibly informative and thorough hub on fibromyalgia. Back when I was a case manger for women in recovery, I had several women with this. Most of the women who had it had also suffered with sexual abuse as children. I am guessing the link here is the stress factor they endured growing up. This will help so many people that are suffering from the disease, as well as caregivers.


FlourishAnyway profile image

FlourishAnyway 2 years ago from USA

I'm sorry you have to deal with this and hope that some day soon there are better therapies or even a cure. I'm in a similar boat with MS.


Writer Fox profile image

Writer Fox 2 years ago from the wadi near the little river

This is a condition which definitely needs more attention from researchers. Hope a cure is found soon.


Sandyspider profile image

Sandyspider 2 years ago from Wisconsin, USA

My Aunt had this. Good to read about it.


SANJAY LAKHANPAL profile image

SANJAY LAKHANPAL 2 years ago from Mandi (HP) India

Thanks for the informative article.


Sandyspider profile image

Sandyspider 2 years ago from Wisconsin, USA

My aunt had suffered from this.


Codebreak profile image

Codebreak 2 years ago from Erwin, TN

I have fibro and this is a Great Hub!!!


ologsinquito profile image

ologsinquito 2 years ago from USA

One of my friends has this, and she is often in pain.


Barbara Kay profile image

Barbara Kay 2 years ago from USA

My daughter has been diagnosed with this disease. I wonder if it isn't another autoimmune disorder, since there are so many relatives in our family that have them.


WalterPoon profile image

WalterPoon 2 years ago from Malaysia

Barbara, Wikipedia says: "The exact cause of fibromyalgia is unknown but is believed to involve psychological, genetic, neurobiological and environmental factors."

Doesn't sound like an autoimmune disorder to me.


teaches12345 profile image

teaches12345 2 years ago

I have friends who suffer from fibromyalgia. It is a daily concern for them as they balance their lifestyle while dealing with pain. Thank you for the education.


WalterPoon profile image

WalterPoon 2 years ago from Malaysia

To be diagnosed with fibromyalgia, a patient must be sensitive in at least 11 of the 18 possible tender points, as well as experience widespread pain in all 4 quadrants of the body.

http://health.jbdirectory.com/Fibromyalgia


suzettenaples profile image

suzettenaples 2 years ago from Taos, NM

Wonderful informational hub! My sister suffers from this and it is no picnic for her. The pain can be excrutiating at times. Thanks so much for explaining this odd medical issue of which there is no cure. More needs to be done to research fibromyalgia and find what causes it. Too many people today suffer from this. Thanks for a great interesting and informative hub.


Lady Guinevere profile image

Lady Guinevere 2 years ago from West Virginia

There are certain families of vegetables that do make this disease worse. They are in the nightshade vegetable family. I know of a few people that have told me this and I did some research on it because I have another type of condition that these vegetables also exacerbate if eaten. The vegetables are potatoes, tomatoes, Peppers (green or red), tomatilla, eggplant or anything with capsicum (sp) in it.


ocfireflies profile image

ocfireflies 2 years ago from North Carolina

mle,

I am back for another visit.

I think researchers should look

closer at the nerve connection.

Also, thanks to Lady Guinevere

for her info regarding the vegetable

connection. I had no idea that

these veggies were in the nightshade family

and am wondering if by nightshade,

it is the same nightshade family that

some homeopathic remedies

are made from.

Best to a very special lady,

Kim


ologsinquito profile image

ologsinquito 2 years ago from USA

So many people are living with physical pain. One of my friends has fibromyalgia, and I can see a little of what she goes through. But she bears it very well.

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