wildhope
wildhope - Oct 13th, 2009 4:45 PM
[ Original Post ]

Hi everyone,
My 17 year old daughter has recently been diagnosed with fibromylagia. She has been to the doctors who have given her Amitriptyline tablets which just gave her migraines, she has also had acupunture, unfortunately that made her 10 times worse. I would be grateful for anyone who can give me some advice about where we go from here, the doctors don't seem to have much idea. She suffers greatly from joint pain all over her body. I'm hoping as she is so young that she will maybe grow out of it. Any ideas anyone? Thanks

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brooksidefarm - Oct 13th, 2009 4:59 PM

Oh dear. I feel for you. There are so many people here that can tell you different things. Take as much time as you can reading the threads. That will help. I manage my pain without meds right now. I have had this for about 1 1/2 years and am 40. First, pray. God brings comfort. Second, I manage the joint pain with lots of Vitamin B. I order Lindberg vitamins and get the women's multi pack which are good, but I added in the Supreme Stress B and that really reduced the joint pain after about 3 weeks. Heating pads at night or anytime of severe pain are helpful. Go to quantumheat.net. They have these amazing heating pads that you use over and over and do not need to be plugged in. Rest a couple times a day. If she can work through any low impact exercise, that will help. The less active we are the weaker we seem to get which makes the pain worse. Hot baths can help relax before bed. Get the best sleep possible. Experiment with pillows and pillow tops for comfort. At bedtime, read something comforting or funny like Scripture or a favorite author, drink something wrong, keep the room dark. Some people have great luck with regular massage. I am just going to start that next month, but just make sure to get a massuer who understands FMS. You will also find others on this site who have used oxygen, hot tubs, etc. Look at the Alternative Therapies on this site as well. Have your daughter read this site, as when she feels that she is not alone, that will help her state of mind. Lastly, to battle that emotional spiral, stay focused on what she can do, not what she cannot. God bless you.


Fantod - Oct 13th, 2009 7:00 PM

wildhope - Welcome to the group. There is a lot of good information contained in the blue boxes on the lefthand side of this page. Your daughter and the whole family should take some time to read through all of the topics.

The reason that your daughter was prescribed Amitriptlyine is due to the sleep problems associated with Fibromyalgia (FMS. It is virtually impossible to get restorative sleep as an FMS patient. The reason for this is that FMS causes short bursts of high intensity brain activity which disrupts the deep sleep cycle. Your muscles need deep sleep in order to repair themselve from the days activity. No deep sleep means higher levels of pain. Amitriptyline may not be the answer for your daughter but it is a usually the drug of choice for sleep issues associated with FMS. She does need another medication for sleep ASAP. Restorative sleep is a crucial part of the treatment of FMS.

I used accupuncture myself and had good results. It does make you feel much worse intially and then things start to turn around. I could not continue as I could not afford the out of pocket expense.

Have you seen a rheumotologist? That is the doctor best suited to manage FMS. You can go online to the National Fibromyalgia Association website and register. Then you can see a list of fibro-friendly doctors in your area. Believe me, there are still plenty of doctors including rheumotologists who either don't believe that FMS exists or do not keep up to date with the current treatment plans. You can also call your hospital physician referral service and ask them for a rheumotologist and/or a pain specialist (I have both) with an interest in FMS. FMS is recognised by the National Arthitis Foundation and the Center for Disease Control. The better educated you are on the subject the better able you will be able to make informed choices for your daughters care. There is no cure for FMS; the mechanism that causes it is not understood. It can be managed with medication. Unfortunately, it is not likely that she will "grow out of it."

There are now 3 drugs used to treat the widespread chronic pain associated with FMS. Only certain classes of prescribed medication work. OTC remedies do not and taking an excessive amount of Tylenol over time may cause liver damage. The most popular drug is Cymbalata which is used to treat the depression that usually accompanies FMS and well as the pain. I use it, and I find it very effective. Lyrica is another choice which is advertised on TV all of the time. The most common complaint seems to be rapid weight gain. The newest medication in the FMS arsenal is Savella. It has been used in Europe for years and is now available in the USA. We have some members that are using Savella and have had very good results. Most rheumotologists have 2 week trial packs for patients to try pior to paying for a prescription.

Diet is important when it comes to managing pain levels. Deep fried food and lunchmeat (nitrates) will probably make her pain level worse. Also any artifical sweetner is a big no-no.

I hope that some of my comments are helpful to you in some way. Take care and God Bless.