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Staying Connected

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Many of us with fibromyalgia are so fatigued (and sometimes in so much pain and so foggy), that it takes every ounce of energy we have just to get through the day. We have to focus on the basics, and often, as our illness progresses, the ability to get out and socialize becomes more and more difficult.

For me, I first started declining invitations for social events on the days that I worked, knowing I would be too exhausted to attend. As my illness progressed, I often felt too tired to go out other weekday evenings, and then on weekends you would likely see me on the couch. My immediate family was very supportive, but extended family members were not so understanding. I think they just didn’t understand how fibromyalgia can make you feel.

It takes creativity, some courage, and some time to stay connected to friends and family when you have a chronic illness. But the payoffs can be great. I encourage you to share a bit about what you are dealing with your close friends. Work on ways to stay in touch (Seeing them for lunch on the weekend instead of dinners? Having a potluck to connect instead of trying to pull off an entire meal?).

Electronic media can be great. It can keep you up to date on what is going on, you can stay connected with friends, and you can participate in discussions when you feel like it (and from your couch). It can really brighten your day. But there is something uniquely special about interacting with a live human friend.

When I started to improve and began to return to the social scene, I realized how much fun it is to feel well and be with people. Until you are on a healing path, keeping your connections can lift your spirits and make it easier for you to jump back into the game when you are ready.

Becoming thin but not me

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I have suffered from migraines for many years, and when I started getting them very frequently (about 15 a month) my well-meaning physician placed me on Topamax, a migraine preventative medication. Ah! What relief! The medication did its job, and I did get far fewer migraines. Topamax can have some side effects however. Topamax can make you drowsy, it can make it more difficult for you to come up with the word you want to use when speaking (its nickname is “Dopamax”), and it can cause you to lose weight. Most of these side effects only occur at high doses, but at a very low dose I noticed that I was losing weight (you will have to ask my family and friends if it affected my ability to speak glibly and coherently). I also was slightly more tired.

My weight loss was not significant–about 10 pounds–and I think that clothes looked good on me for the first time since I was 12. I was not too thin, but had a waist, and this was fun. Fast forward to 3 months ago. I now have pretty much stopped getting headaches as my fibromyalgia symptoms are fading away. So I started weaning myself off Topamax. Right away I noticed I had more energy–wonderful. But now I am noticing that I am slowly returning to my pre-Topamax weight. But I liked my new body!

I am trying to be a big girl, and be realistic about this. I love the fact that I am healing and I can start eliminating medications. Side effects that affect your brain are not trivial. So as my jeans get a little harder to put on, I enjoy the fact that I have fewer headaches and more energy. I am returning to my real body and my real brain–before fibromyalgia took a hold on me. Besides, the big smile on my healthier face is what is really in style!

Feeling Thankful

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I have been working hard on reversing my fibromyalgia for 22 months now. Most days are good days. I am able to think clearly, have the energy to work part-time, and most of my fibromyalgia symptoms are fading away. I am able to socialize a bit, and participate a lot more in family activities. There are some days however, that are NOT good days. Some days I have a raging migraine all day/night, and some days I am unbelievably exhausted. But these days are few and far between, and serve as a reminder to me of what my life used to be like, and what the lives of my patients are like now. I am incredibly thankful for the doctors and other practitioners who have helped me find the treatments that work for me.

My bad days serve a purpose. They are flashes of what my daily life was like 2 years ago, and increase my motivation to educate and provide treatment options for people with fibromyalgia. There is hope for ALL of us to feel better!

Fibromyalgia and Sleep–The Impossible Dream?

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“Sleep is the golden chain that ties health and our bodies together.”  Thomas Dekker

Most of us with fibromyalgia long for the kind of deep restful sleep we had when we were kids. This is because most of us with fibromyalgia have non-restorative sleep–meaning that we could be in bed for 12 hours and still feel exhausted when we wake up. Why don’t we just sleep even longer? Turns out it is not that simple. EEG analysis of patients with fibromyalgia shows that during deep or delta wave sleep we have continual “alpha wave intrusions.” This is a fancy way of saying that our deep sleep is continually interrupted and we are thrown back into a light stage of sleep. It would be like having your annoying little brother sitting by your bed all night tickling you when you fell into a deep sleep! No wonder we are so tired. And studies show that certain hormones and natural chemicals are only released during deep sleep, and these allow the body to repair tissue and reduce body pain. Also, we are much more likely to have fibrofog if we are not rested.

Find out what your body needs to get improved sleep. Start with the natural measures, and if you need medications, often over the counter medications can be helpful. If you need prescription sleep medications, then you need them, so don’t feel bad about it. For those of us with fibromyalgia, getting a more restful night sleep is the first step towards feeling better.      SWEET DREAMS!