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 like to post this for newbies...
The first three go-to meds for fibro are Cymbalta, Savella, and Lyrica. I have had great success with Cymbalta and with a low dose of naltrexone (3mg) which boosts energy and the immune system. It can take Cymbalta and Savella 3 or 4 months to start working on the pain ( I don't know about Lyrics). This means that if the dose is increased before three months, the person might get side effects before they start to get benefis, discontinue the med, and lose out on a possible helpful treatment. I would choose Cymbalta over Lyrica because a lot of people gain weight on Lyrica. Cymbalta has helped me keep my weight down.
I have also undertaken lots of lifestyle changes tailored to my symptoms. I think it is extremely important to treat all symptoms. Think of your body as a "terrible two-year-old" who is having a dreadful tantrum. It is not going to listen to reason and start to become agreeable until it has calmed down. Don't force it.
The three lifestyle changes that I think are likely applicable to most people are:
1) aqua-therapy,
2) vitamin supplements, all, plus as needed to get average or high blood levels of b12 and D, and
3) anti inflammatory diet that is gluten, dairy, and additive free (except for Greek yogurt).
I strongly urge people to read up as much as possible, such as the fibro for dummies book. Here are two files that have very good information.
https://www.dropbox.com/s/sbsl6juz0jo1wrg/What%20Primary%20Care%20Physicians%20Should%20Know%20About%20Fibromyalgia%202.docx
https://www.dropbox.com/s/ou6dd3x4kuqsczo/What-to-do-while-looking-for-a-good-pain-doctor.pd
The first three go-to meds for fibro are Cymbalta, Savella, and Lyrica. I have had great success with Cymbalta and with a low dose of naltrexone (3mg) which boosts energy and the immune system. It can take Cymbalta and Savella 3 or 4 months to start working on the pain ( I don't know about Lyrics). This means that if the dose is increased before three months, the person might get side effects before they start to get benefis, discontinue the med, and lose out on a possible helpful treatment. I would choose Cymbalta over Lyrica because a lot of people gain weight on Lyrica. Cymbalta has helped me keep my weight down.
I have also undertaken lots of lifestyle changes tailored to my symptoms. I think it is extremely important to treat all symptoms. Think of your body as a "terrible two-year-old" who is having a dreadful tantrum. It is not going to listen to reason and start to become agreeable until it has calmed down. Don't force it.
The three lifestyle changes that I think are likely applicable to most people are:
1) aqua-therapy,
2) vitamin supplements, all, plus as needed to get average or high blood levels of b12 and D, and
3) anti inflammatory diet that is gluten, dairy, and additive free (except for Greek yogurt).
I strongly urge people to read up as much as possible, such as the fibro for dummies book. Here are two files that have very good information.
https://www.dropbox.com/s/sbsl6juz0jo1wrg/What%20Primary%20Care%20Physicians%20Should%20Know%20About%20Fibromyalgia%202.docx
https://www.dropbox.com/s/ou6dd3x4kuqsczo/What-to-do-while-looking-for-a-good-pain-doctor.pd
Those who took objection are correct in pointing out that I am relating my experience. However, my experience is not unique or bizarre. Look at the research literature. I provided one link that summarizes research findings as of 2010. Because lots of people respond to Cymbalta, Savella, or Lyrica, those three meds are the first go-to meds for fibro. Of course, plenty of people don't respond to those meds so there are other options for non-responders.
A forum such as this is excellent for seeking and receiving support, so of course, we all vent. Very valuable. But for newbies, I think it can be quite scary and defeating. I try to inject hope and I do it because my experience and that of other people I know has been incredibly positive. But, I haven't forgotten the dark days when I thought my life was over; the fear, the anxiety; the pain. Newbies deserve to be encouraged to seek what will work for them. I always speak about good management of fibro. I never speak of cure.
Again, my apologies to those I irritated. If you have things that have worked for you to improve your life, please share them.
I see a Dr. Of Traditional Chinese Medicine for Acupuncture. She is the first Dr. that every picked up on the fact that I have "low energy" as she calls it, because she doesn't put labels on illness like in western medicine. She has been very helpful reminding me that I am sick and I need to rest and take care of myself for the first time in my life. Regarding the wheat free diet, I was telling her that I was gaining weight and was going to try cutting out wheat. She told me not to worry about the weight until I was feeling better. She reviewed my diet and told me that I was not overeating and that it was the meds and the illness causing the weight gain. She urged me not to try ANY diet at this point. Eliminating something totally would cause my body a shock that it wasn't up for right now, and trying to monitor my eating my following a diet would add more stress to my life which would only cause more problems. Her advice made sense to me. I realize that we were not talking about weight gain, we were talking symptom relief but I just wanted to share this as it really made sense to me. Hopefully I didn't offend anyone!
Here is one article from the Washington Post written by a doctor and his concern about drug companies and their so called research.
As drug industry's influence over research grows ... - Washington Post
www.washingtonpost.com/...drug-industrys-influence-over-research-grows...
Nov 24, 2012 - For drugmaker GlaxoSmithKline, the 17-page article in the New England Journal of Medicine represented a coup. The 2006 report described a ...
There are many more articles with the same concern and it gets down to profit. I remember a few years ago on a news show a man that use to work for the pharmaceutical company was talking. He told how the company would develop a drug then decided what it should be used for to make the most money.
Please beware of research papers. It's not all black and white.
All experience is valuable - you never know what will resonate with someone, no matter how unusual or off balance it might sound. It's just really important to remember that that is all it is - one person's experience.
It's really easy to mistake one's own experience for the universal experience.
My use of "most people" refers to aqua-therapy, vitamin supplements, and anti-inflammatory diet, NOT to medicines. Medicines are in the paragraph above. Fibromites have sharp differences in their responses to medicines. Indeed, one of the things that I heard recently on a podcast was that if the low dose of whatever does not make you feel at least a little bit better is some way or other, don't increase the dose. It makes sense given our sensibility.
I do believe that one or more of those three things "are likely applicable to most people." Why? One at a time.
Aquatherapy: 1) Research on aquatherapy resulted in significant improvement among study participants. Look at the NIH link above. Of course, it doesn't mean everyone, but enough people improved for the results to be statistically above chance. 2) There is no pharmaceutical profit motive there that would lead one to question the findings. 3) The fibro specialist I see prescribed for me it because she says that she has had great luck with it. 4) It did wonders for me. Having said that, if you are not comfortable in the water and don't find it relaxing, it's not for you. I never said everyone.
Vitamins. From forums, from the fibro specialist I see, and from my personal experience, it seems that most of us have some sort of vitamin deficiency. B12 and D deficiencies seem to be common. Other supplements often recommended are magnesium and vitamin C. Many if not most of us have IBS which PROBABLY interferes with our absorption of nutrients. Stress causes the body to increase its use of certain vitamins. So, I stand by statement that "most people likely" could benefit from some sort of vitamin supplement.
Anti-inflammatory diet. This diet is not about inflammation as in the type associated with auto-immune disease. It is recommended for people with heart disease, with cancer, with all sorts of conditions. As best as I understand it, it is a diet that is easy to digest. The fibro specialist I see recommends it to her patients and it is also recommended for people with chronic fatigue. Google, Dr. Weil's diet for more information.
None of these things will cure, either by themselves or in combination and some might only make us feel a little better. But, a little improvement here from one strategy plus a little improvement there from another strategy, it can add up to make it worthwhile.
First, you stated that "The first three go-to meds for fibro are Cymbalta, Savella, and Lyrica." This is not true for most people. Doctors try a lot of other things before going to these and many doctors do not prescribe them at all. They are not "go to meds".
Yes and most people do Not use aqua therapy, supplements and anti-inflammatory diet.
Painkillers have a short half life. In other words, they start to work within minutes. That means that the chemicals get to the brain quickly and spike. The spike relieves the pain but because it is a level higher than normal, the brain shuts down some of the receptors, as in, it figures it has more than it needs. With fewer receptors, the person feels more pain and needs higher doses.
SSRI and SNRI work by causing a build up, a little bit left over that accumulates over time. So, they take longer to kick in, but they don't have the same burst type effect. This is the way I understand it. A physician or pharmacist would do a much better job at explaining it.
The first of the two links In my original post is a very interesting discussion of fibromyalgia by physicians who are researchers. Have you taken a look? Some pieces are a bit technical, but I found it worth wading through; so helpful!
I have no side effects - just pain relief. I'm not an isolated case - there are many people like me, here at DS and elsewhere, who have a life because they have the proper tools to manage their pain.
Lyrica made me sleepy, stupid, and angry. Cymbalta nearly blinded me after six days. Savella was a good pain control med but I couldn't tolerate feeling as if I was repeating the first trimester of a never-ending pregnancy (without the reward at the end) - the nausea was unbearable.
Many of the most effective treatments are "off label" and not approved specifically for fibromyalgia treatment. That's why it's so important to find a doctor who will treat you as an individual, not just as a file with forms to complete.