Any Suggestions for Childhood Fibromyalgia?

Find out which pharmaceutical company produces the drug. Go onto their website and there might be a program which offers free or reduced cost meds. I think they benefit from this in a way -- tax write offs and free advertising for starters. When I found out that my seizure med was $800 a month I found a company that does this called "Bridges to Access". A three month supply was delivered to my home for free. Med prices definitely makes this kind of situation even worse. Hope this helps.

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I am 20 and I have Rheumatoid Arthritis. I was officially diagnosed at 19 though I was showing symptoms since I was 9. My mother has fibromyalgia and it seems from my research that the two are linked (like they may be on the same dna strand). I understand the situation you are in because I have seen how my mother has done most of my life. If she has to be tried on the other medicines first than try them. I believe that prozac came out with a children's version, look into it. Have open communication with your daughter's doctor. Watch her mental stability as she progresses with the disease. This disease can cause a person to be EXTREMELY tired and as that happens it can make it difficult for her to be a normal teen. As well, when she gets older the difficult part for her is that she will need to have insurance for the rest of her life, and it will have to be pretty good insurance. One things that has kept me at a job that I have trouble with is that the insurance is the best I could ask for and I can't go without insurance.

Do the research. I know that something like this is difficult to manage but for the sake of your child you and she should sit down and discover as much as you can. Sit down with the doctor and discuss all the options. Don't be afraid to look into homeopathic options (such as change in diet or herbal rememdies). I'm not telling you to bypass the western medicine (I would never tell someone to do that when I refuse to). However, sometimes if you add on other homeopathic things with the western medicine it gives it more ability to work.

I think the biggest thing I could tell you is to keep her active. Her pain may make her want to stay in bed for days at a time. Don't let her overdo herself (if she does too much than she may crash for days at a time); however, if you keep her getting out of bed in the morning and doing some small things in the day (especially getting out of the house some) than it should help her in both mood and in her pain level. Usually I would not tell a parent this but you have a different situation so if she is in enough pain or exhausted enough to have to stay home from school than consider trying to get her out a little in the afternoon, evening, even if it means her going with friends. When dealing with a chronic condition like this you have to make a few exceptions to what typical parents do. Mornings may be worse than later in the day for her (I know that my pain with the RA is worse in the morning and so is my mom's with her Fibromyalgia).

If you want to talk you can email me at ____@____.com.

I wish you and your daughter luck in dealing with this and hope that your daughter is able to handle the disease well.

I almost forgot check with the drug company that makes the medication because sometimes they will have a program to pay what the insurance doesn't so that she can be on the medicine, usually up to a certain amount (it's how I was able to have Humira).

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Try the Healthwell foundation. www.healthwell.org we applied to them for medication for my husband. The paid for what our insurance did not cover. Over $1000 per month in our case. Lots of paperwork, but well worth it.
S.

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Hi R.,

Read this, I use some of her products in my work as a cosmotologist and CMT...her story is amazing to me, I am going to order her book for my girlfriend who has fibromyalgia....the web site is www.mlis.com

Linda T. Nelson is a Doctor of Naturopathy with a Ph.D. in Preventive Health Therapies. She is a guest professor at the Brigham Young University School of Nursing, and has taught classes in preventive health all over the United States and in many countries throughout the world. Linda is the published author of the book Living Symptom Free: Fibromyalgia & Candida. She is an innovative business leader that has devoted much of her life to improving the health and appearance of individuals through a company that values natural, chemical-free treatments and education to promote rejuvenation and an improved quality of life.

Dr. Nelson's passion for preventive health took root when she was 37 and had developed pain and illness that were controlling her life. Her mother was a Registered Nurse, and as a child living with unlimited access to antibiotics at a time when the dangers of long-term use were not known, was given penicillin for every health problem. Over time, she developed depression, the inability to gain weight, insomnia, and life-threatening allergic reactions to many foods and plants. She had muscles removed in her hip to control muscle clicks and pain, and had her jaw broken and wired shut for six weeks as treatment for TMJ (Temporomandibular Joint Dysfunction). Antihistamines, sleeping pills, steroids, and pain medication were a part of life, and while they controlled immediate symptoms, long-term health problems were compounded.

It was at this point that Linda was introduced to body cleansing through detoxification by a Holistic Doctor in California. Growing up in a conventional medical household, she felt at the time that holistic therapies were bizarre, but was desperate enough to be willing to try anything. She began the detoxification program and felt her life returning within two weeks. Amazed, she focused her energies on education in how the body works, what our organs are meant to do, and how to allow the body to rejuvenate. Because her life was so dramatically changed, she was hooked and had to find out more. She changed her career, returning to school to receive bachelors, masters and Ph.D. degrees in Preventive Health Therapies. She became a Doctor of Naturopathy. Through her education, she determined that what she had been experiencing for many years was fibromyalgia, a medical term that described her health history. After learning how to become symptom free through holistic methods, she placed an emphasis on helping other sufferers of this same syndrome. She developed a natural lifestyle change program and wrote a book that has helped hundreds of women overcome the debilitating effects of fibromyalgia.

While gaining this advanced education, Dr. Nelson purchased quality formulas for the detoxification process that she had experienced, along with a small natural product line that improved health and appearance. She had the desire to create a company that could help others learn the benefits of holistic health and beauty treatments. Over time, this product line has been added to with the help of researchers and biochemists to create The M'lis Company, a supplier of superior nutritional and body products. Dr. Nelson currently resides in Salt Lake City, where she continues her quest to help others achieve health and well-being through education and holistic methods.

I hope this helps,
T.

Hi R., try going to the www.womentowomen.com site for info on Fibralmyalgia. They have lots of articles, written by the women doctors and RN's who run the site. Their premise is to look at the adrenal glands, and adrenal fatigue. Lots of info to absorb, but they do have good insight and info. The thought of your 16 daughter taking prozac and other medications is not a good thing. Please check this site out. I've been using their program for help with menopause and find all their articles informative. Be well, J.

In addition to all these other suggestions, I'd do a google hunt for support groups for you both. As you can tell just from here, there are a lot of people out there who have been coping with this for a long time. Hook up with them, and benefit from their collective experience.
Here's one place to start: http://joannao.blogspot.com/search/label/fibromyalgia

HI R.,

I don't know where you live. but if you are in the silicon valley. There is a naturopathic doctor who may be able to help without all the expensive mediceine. Her name is Dr Tanya Baldwin in Los Gatos ###-###-####. I would look her up on the web and see if she can help you.

good Luck

J.

I was also diagnosed with FMG at 16. I am now 24 and my doctor doesn't know anything about the disease. I would recommend you find a good doctor who is very knowledgeable on the disease. The important thing to do is to support your daughter and believe her when she says her body hurts, the main problem with this disease is that you can't physically see any symptoms so you tend to think they are making them up, trust me the pain is very real. There is some good information on the internet about FMG, and it really isn't as scary if you just take the time to learn about it.

Hi R.,
You should feel very proud of yourself for reaching out for support, it takes courage. I agree with the response from Page. There are many emotional and mental health issues which manifest themselves as chronic pain. I am not suggesting that your daughter has mental illness at all. General anxiety, depression, social phobias, etc. can manifest as physical symptoms. So, she may not need meds for the rest of her life. At 16, I would really -honestly - evaluate her diet and exercise levels. I would also take a look at any school and extra-curricular activities and stresses these things may be putting on her. How is she sleeping. Try to remember when this "pain" started, and events that the family may be experiencing, or close friends? Life issues such as: job change (loss), financial issues, death in family, etc. Also revisit how her "pain" was responded to. Sometimes the attention one gets or does not get for any reason can increase the "flare ups".

Best wishes for you and your family.

My daughter was diagnosed at the age of 18. She is now 21 and is doing well. She uses topomax and ultraset. Winter is worst for her than summmer. We live in Fresno Californias. She is married, works full time and is a full time college student carrying 12 units. Your daughter will manage. Try costco for her prescriptions or Walmart. They seem to be the lowest for cost. I would be careful of the prozac. If the insurance pays for it and she doesn't take it it won't work then the insurance will have to pay for some thing else, right?
J.

There is a book you can get thru your library called from Fatigued to Fantastic - its by a Dr. that specializes in fibromyalgia and has a treatment program that includes herbal supplements and some medicines. Its very hopeful. You can also go to their website and call them. You may be able to heal this rather than assume your daughter will live with alot of pain forever -- with the right help. Good luck!

Hi R.
Sorry to hear that your daughter isn't doing so well, go to this link http://www.naturalnews.com/023452.html
it's a newsletter that I like to read, it has MANY articles, you can do a search on there. The idea behind it is dealing with health in a healthy way... Additionally, I think diet could play a major role with fibromyalgia. Before you succumb to thinking that your daughter may need meds for the rest of her life, check out some alternatives. Again, this website naturalnews.com is a good starting point.
I wish you the best!!

Hi,

I have a friend who has fibromyalgia and other health issues too. She is 39 years old now. I don't know when she got the fibromyalgia though. Anyway, she found a product on the internet that was VERY helpful. She said it gave her life back to her. She said to tell you to go to www.maxgxl.com/maxmagic and check it out. There is a video and other information. There are a couple of other products they sale there too but she uses MaxGXL. Hope this helps! Good Luck!!!

R.,

I just read all of your responses and all of the advice is so wonderful. I just wanted to add an alternative diagnosis for you to rule out (I know, I know, just what you want to deal with, right?)... My son's day care provider was recently diagnosed with Fibromyalgia and after tons of research, she felt that it just didn't seem right to her. She visited several specialists and they have determined that she has Lymes disease. I guess the symptoms are very similar but the treatment is different. After a few months of antibiotics, the best "cure" is diet and exercise. Please make sure your daughter was properly diagnosed. Fibromyalgia seems to be the fall back diagnosis sometimes. I wish you and your family the best of luck.
-E.

prozac sounds very scary.insurance companies don't want to pay out.hypnosis is being used to help with pain-they're starting to use it for dental work in belgium.i know a dancer who was in constant pain after a car accident and got a prescription for marihuana from her doctor in new york.she had been run over by a car and had broken almost every bone in her body.good luck!a

Fybromyalgia, as well as other muscle issues, are often routed in the gut. Might want to have a CDSA done on her to see what's going on. Might be just as simple as cleaning up her diet, which as we know most teens do NOT have a decent diet.

R.,

I think I have information you are looking for.

The Bowen research institute who deals with fibromyalgia patients tested all of their patients for Borrelia burgdoferi bacteria and 100 precent tested positive. Some doctors are treating it with tetracyclines and some naturopaths treat it with SAMENTO.

There is a breakthrough test called Q-RIBb which can find this organism quickly.

please see these websites:

http://www.springboard4health.com/notebook/health_lyme_di...

http://www.marshallprotocol.com/forum32/1263.html

www.ILADS.org (this website lists doctors who support this theory of Bb bacteria and fibromyalgia. One is in SF and one in Palo Alto)

My sister has been sick with neoropothy for 15 years. She is taking SAMENTO - 5 drops, 3 times a day
and also aloe vera and MSM. She has seen a drastic reduction in pain.

Blessings,
G.

R.,
please do not put your child on meds for fibro. Take her to a naturopath (ND) and get her off dairy and wheat. This helped my mom tremendously! Increase her fish omega 3 oils (flax seed oil and fish oils - try Nordic Naturals from Whole Foods) Get her into yoga or pilates. I'll try to write more when i have time - just put my abby down and I'm exhausted tonight. I'm sure you will get some great responses. #1 advice is the diet and take her to see a naturopathic dr!

My mom has fybromialgia and I am showing signs. Anti-depresants aren't just for depression. Anti-D's can be used to treat bells palsy, fybromialgia, sleep disorders and much more. There is a cookbook out at Borders books that teaches you about foods that can trigger more pain and foods that can keep the fybro under control, also you might try a support group for you and your daughter. This is not a fun disease to live with but it's not the worst thing out there either. Try to stay possitive.
T.

Hi R.. I have lots of thoughts on this. First of all, Fibromyalgia is not a disease. Fibromyalgia is the name doctors give for chronic pain with no apparent cause. It is the diagnosis doctors give when you say you have pain but they can't find anything wrong with you.

So this is good news. Therefore, there is no reason to assume your daughter will have to be on medication for the rest of her life. My son went through a strange chronic pain disorder last year, and it was the worst thing I have ever been through. He was in pain non-stop for 6 months. But it was cured. Where is your daughter's pain? If you would like to speak further on this, message me. -P.

I would get a second opinion from a rheumatologist and ask them to double check for seronegative arthritis (an autoimmune arthritis not able to diagnosed with a blood test). Fibromyalgia is often an inaccurate diagnosis.

You are right to be suspicious of anti-depressants. I was in the same boat and they really screwed with my sleep cycles, made me gain weight, and made me depressed. They did not help with the pain at all.

I would also recommend going to an accupuncturist rather than starting down the path of taking lots of medicine.

Hi R.,
You may want to start researching natural options. This website can get you started. Just click F and find Fibromyalgia.
http://www.earthclinic.com/ailments.html#f

I hope you find something that helps.

I am so sorry. I was diagnosed with fibromyalgia in 2006. I live with it every day. Prozac is a great idea. It takes two weeks to start working. Make sure you watch her closely due to the side effects. Once she is on an antidepressant she will get her life some what in order again. I am on Paxil, but was previously on Prozac and it actually worked much better. A couple of things that have helped me: I try to wake up and go to bed at the same time everyday no matter if it is a weekend or not. I try to limit my naps, so I can sleep better at night. I take Paxil daily and half of an Ambien at bedtime due to the terrible insomnia it causes. If you get a good night sleep than you feel better the next day. Within 30 minutes of getting up in the morning I take a warm shower it helps loosen your muscles for the day. I have read a couple of books, but trial and error is the best thing to do. Keep a journal on what works and what hurts. When in pain her memory will not be the best. Try not to have her do one thing for too long(sit and watch television, read,etc.). Chairs with higher backs help me a lot, than I don't get up with a neck pain. Clothing is even a challenge. I can't wear sweatshirts or sweaters with zippers on the front or necklaces, they hurt. Shoes are a challenge. I have to wear flats at all times and some shoes weigh too much. When I get a headache I have learned some stretches to help the neck muscles, so they don't get too bad. One of the worst things I could have ever done was get a massage, I prayed that I would die. I was in so much pain I had a fever and my heart rate was so high they put me in the hospital. Also, physical therapy did not work for me, but works for others. Swimming is probably the best sport, but don't have her do too much at first. Ease into it. If you or your daughter have any questions please e-mail and i will try to help the best I can. Hang in there and be strong for her. I am married, work 6.5 hours a day and have two kids that are both in sports. You just have to mantain it.

Hi R.,

Wow, that must be really though. Have you seen another doctor for this to get a second opinion? There are MANY other options for her. There is something that is acutally causing this pain, and it necessary to get to the cause of the issue rather than masking it with medicaitons. I would recommend seeing a chiropractor. As a chiropractor myself(Align Healing Center), and having a mother that had Fibromyaliga, I know that you can get to the cause of the problem. I can referr you to a great chiropractor in your area. It is important to see the advise of another health care professional before putting your child on strong medications.

Take care,
B.

I'm so sorry and I'm sure this is just terrifying for you. The first thing I would make sure to do would be cut out all fake sugars and fats from your diets. I had a friend who suffered from this for over 10 years and it turned out it was actually aspartame poisoning from diet soda. Those things CAN make chronic pain worse, so dropping them can't hurt. I have another friend who does have fibromyalgia and takes lexipro, which seems to help. Take care and best of luck! From what I have read prozac may help ease the symptoms, and also a mostly vegetarian diet, raw foods when possible, can also control the symptoms (most of her diet coming from non-processed/packaged food). C.

You mentioned that your insurance will not cover the cost of the medications unless other avenues are tried first. I would do research on these "other avenues", including the Prozac, and send a strongly worded letter of appeal to get the meds covered. Go straight up the chain of command if you keep getting the run-around from lower-level "managers". Document phone calls. Ask names and titles. Ask to talk to a supervisor, and ask who their manager is. It makes people think twice about saying no if they know their boss is going to be brought in on the matter.

Good Luck,
K.

I forget what exactly, but there are nutritional supplements that can help with fibromyalgia. Fish oil, magnesium, maybe? You may really want to research that angle.

When I was diagnosed with RA Kiaser did a very poor job of making me feel better. I got so low and depressed. Same thing -- they wanted to give me all the cheap medications before the expensive, new promising medications. I decided to not take any. Once I shook off the kiaser downer, I was a lot stronger mentally... and physically.

In Palo Alto I suggest Dr Bryan at Cypress Natural Medicine.

Good luck. Chin up!

Hi R.,

I am a wellness consultant and have been one for 25 years. In China and Japan they diagnose this illness as magnetic deficiancy. I have helped many with this illness.

The problem with medicine is it only treats the symptom it does not address the cause. There is also side effects from medicine that can be worse then the original problem.

Are you in the Bay Area? I work with doctors that educated Eastern medicine and they have a luncheon in Feb the first Tuesday.You may ask questions and learn how to rebuild your daughters immune system and make her body stronger so she will not have to grow up with this illness.

If you are interested in more info email me and I will share.

Have a great Sunday.

N. Marie

hi

I am an adult with fibro, diagnosed with various stuff in early adulthood, that would now be called fibro.

I am not on medication, and my pain is managable.

I would suggest a few non medicine approaches. First I would suggest a stress reduction program. Kaiser has one that teaches techniques that really help. If we know how to rest and relax our pain is more managable.

I would say that at my worst this was the BEST thing I did. I tried anti depressants and had reactions that were not helpful to me. Not everyone has reactions but consider starting at low doses if you try them as some of us with fibro also have hypersensitivity to drugs.

Exercising will help but it needs to be slow. other wise it can trigger pain.

It is so hard to hear you have a problem that has no answer and hurts, but it is liberating to know you are not crazy. A mixed bag/

write me if I could be of further help.

she is not alone, neither are you. I am sorry your family has to go through this

it sucks
T.

Hi, I personally have dealt with fibromyalgia and am also a nutritional consultant to helps others with all natural support programs which have had life changing results.

I would be happy to help.. please take the time to watch a documentary which I believe will help you understand the true nature of the problem we as moms are up against ..
the medical world is all about managing symptoms.. I work with restoring the foundation of the body so that it heals itself.

www.sharethecause.com.live.

You can reach me via the site if you would like more info on what I have to offer. L. Medina