Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
I,m a member on DS colon cancer group as i was diagnosed stage 3 last year but now doing well, thought that was bad but my daughter has just been dx with fibromyalgia, and I am devastated for her, she is only 23 and been suffering quite a while, its taken two yrs to dx, is that normal? She is constantly in pain, and most days cant get out of bed, she is on so much meds, docs have also advised hydro therapy, acupuncture, cognitive therapy. Any other advise would be great? I cant bear to think what the future holds for her. Anybody any constructive suggestions. All ive heard up to now sounds horrendous.
There are several things she can do to help herself without having to grovel to doctors who are of little or not help.
The first thing I would recommend is for your daughter to determine if she has myofascial pain where the muscles get knots in them that refer pain elsewhere. The knots are called trigger points and have to be broken up in order for the pain to subside which you can learn to do on yourself with a bit of time and effort with trigger point massage. Myofascial pain goes hand-in-hand with fibro, and accounts for a high percentage of pain that isn't from RA, arthritis or other types of illnesses or injuries. The easiest way your daughter can determine if she has myofascial pain is to go to triggerpoints.net, click on a tab of where her pain is and follow the diagrams to see if she has a trigger point for somewhere she has pain. They're very easy to locate, and she has it, she'll be very surprised at how painful the spot is that she didn't know was there. If she does have myofascial pain, she should buy the trigger point therapy workbook at triggerpointbook.com and some sort of massager so she can learn to do the massage on herself. I use a percussion massager and think it's the reason I've done so well controlling my pain. I've had myofascial pain for 40 years now and have gone from being in one degree of agony or another to being pain-free 85% of the time so I know it can be done.
The second thing I would advise your daughter to do is to listen to this seminar on fibro put on for doctors by Dr. Rodger Murphree, a chiropractor who specializes in treating fibro using orthomolecular medicine where you give the body the nutrients it needs to function.
http://www.youtube.com/watch?v=vPGdqpMxU24
Here is a great article by Dr. Murphree entitled Are Fibro Patients Crazy dealing with neurotransmitter deficiencies and other issues. The second link is a brain function questionare that goes with the article:
http://www.drmurphreestore.com/newsletters_letters/healthnews3_21_07.html
http://www.drrodger.com/brainfunc.html
Like most naturopaths, he sells his own line of supplements, but don't let that put you off in reading his stuff. I buy my supplements from vitacost.com as they have a very good housebrand called NSI that I've done very well on. They also sell most other namebrand supplements at a nice discount.
I don't know what meds your daughter is on but I can tell you from experience that I was on several meds for bipolar disorder which is what they use in treating fibro and became progessively sicker and sicker and sicker and sicker to the point I would have had to perk up to die. At the time, I didn't realize that I was experiencing all sorts of unrecognized side-effects from the meds as they mimicked fibro symptoms. I finally went off them as a couple triggered a receding hairline that freaked me out, and I was amazed at how much better I felt. I should also note that I had been forced to clean up my diet due to severe bloating which also helped me get feeling better. I replaced the meds with amino acids that the body uses to make neurotransmitters and am amazed at how much better I feel on them.
One reason fibro sufferers end up with so much pain as time goes on is that our brains don't produce enough serotonin to keep the pain neurotransmitter Substance P in check. The problem with antidepressants that work on serotonin is that they don't enable the brain to produce fresh serotonin, they merely keep the old stuff from being reabsorbed by the brain so you end up with old, stale serotonin that loses it's effectiveness. This is where the amino acid 5-htp comes in as it is used by the brain to produce fresh serotonin. I'm on a high dose of it as I have horrific insomnia, and since increasing the dose, my pain is more worse than the average woman's my age. Dr. Murphree discusses serotonin and fibro patient's brain chemistry beginning in part 3 of that seminar.
One other thought about the cost of supplements that I know scares people. The way I look at it, I can buy and take supplements so my body has what it needs to function, or I can traipse from doctor to doctor trying to find one who is willing to help me with all the related costs and stress. While I do spend a lot on supplements, it's no more than if I was paying co-pays for prescriptions and office visits. I'm also not at the mercy of a doctor demanding I try a certain med or he won't treat me.
BTW I have 2 boys and felt better during my pregnacies. I hold my own career and yes it is the most difficult thing to deal with. I just wanted to share a possitive light on a dark illness. There is hope and getting a dx now is better than when I was told in '93. My docs said sorry just go to bed.
Good luck wish you and your daughter the best, Beth
I'm sorry about your daughter. It is common for sufferers to go from doctor to doctor and have many tests before the diagnosis is given. I was finally sent to rhuematologist and had the tender point test before I was told. I had never heard of it before and had to ask him to spell it.
I have tried many different medications since I was diagnosed in 97. Many made me feel worse. I've finally settled on a pain med, a sleep/anxiety med and Neurontin for the terrible nerve pain that the regular pain meds don't seem to touch.
I've tried the hydro therapy, acupuncture, lumbar epidurals, physical therapy and many more. What I've found is that some of the treatments brought temporary relief, but not enough relief to maintain and afford the expense.
I'm sorry that she is so young and will have to live with this during this critical stage in her life. I was 42 and my daughter was 18 when I was diagnosed. There are some groups for young people where she could talk with others her same age. You could find them fairly easily by google search.
You might think about have her tested for XMRV.
I recommend acupuncture. I tried tons of meds. and found the most relief with acupuncture. I've heard it works for everyone differently, but it is definitely worth a try!!! The acupuncturist that I used had me go every week for about a month, as my symptoms got better I started going less and less. Right now, I hardly go - and that is usually when I have a flare up. She explained that the acupuncture process isn't meant to constantly treat symptoms, but to retrain the body to function more normally. (Not sure how - but it has helped me!) Even with acupuncture, I still deal with symptoms everyday - but I have learned how to deal with them and grown used to their presence in my day-to-day life. At first, I was overwhelmed by the amount of symptoms that I was experiencing. It seemed like each day brought a new pain or body issue. After awhile, your daughter will be able to identify pain that she has had before and will learn what treatment worked best the last time. For me, fibro has meant learning to be flexible with my body, knowing that it can change from one moment to the next. I know it sounds scary, especially to someone who is so young, but its not life-threatening and its not degenerative - it may require you to make some changes, to slow down (which was HARD for me), but life is still beautiful and you just have to learn to enjoy the little things.
I highly recommend having someone to talk to, a pastor or counselor, someone to just vent openly to. My mom and I are SUPER close, but after awhile it was hard for her to hear about my constant pain - it became extremely painful for her. I was also very angry about potentially having to deal with this for the rest of my life. I think one of the hardest things for me was feeling super sick but not looking it. Physically, people with fibro look normal. Its hard to explain to someone who doesn't have fibro how out of control your body is feeling when you look fine on the outside. This discussion board is really helpful! Not only can you find out what is/is not working for other people, but you can also just VENT - let it all out. We've all been there and are still going through it! We know how emotionally draining it is to deal with a chronic illness.
I know the future looks uncertain. After almost six years, I still get down on myself - thinking that things would be so much easier if I just had someone elses body. The most important thing is to stay positive, not because it will cure you, but because it will make the journey easier to bear. I come from a family of doctors, the type of (wonderful) people who are able to push themselves mentally/physically to the brink for success. I used to have a similar mentality, thinking the only way to be successful was to accomplish a/b/c and work my body to its limits. Today I understand that true success is living as fully as you can. Some days that means celebrating just getting out of bed or getting the dishes done! Other days it means relishing in the fact that you made it through the week or made it through a short jog. Today I am better able to see that its not about changing you life, but changing your mindset. Being able to say Yes, I have fibromyalgia - but that doesnt control my life or make me who I am! Its hard, no lie, but it will be okay. Ill pray for you both!
Blessings.
xxxxx