When I was diagnosed with fibromyalgia in May 2015, my doctor and I discussed my options for medication. As anyone with fibromyalgia and several other chronic illnesses can attest, few medications exist to treat our condition. The two major ones for fibromyalgia are Lyrica and gabapentin.

Lyrica has myriad side effects, many of which are downright frightening, including increasing your chances of being diagnosed with lymphoma. Well, I’ve already had lymphoma (yes, my health is a fascinating story), so I wasn’t eager to try that medication out. That left gabapentin.

I started taking gabapentin in June 2015. At times it seemed like the medication was helping, but another disconcerting thing started happening. I gained weight. I was 127 pounds in May 2015 and 160 in June 2016, when my husband and I decided together to stop me taking gabapentin. My husband has done a ton of research into fibromyalgia and chronic illnesses in general, and found some disturbing things about gabapentin.

So I ramped off the medication over the course of a month. You can’t just stop taking any of these medications – the withdrawal is often horrible even if you end the medication slowly. But, around the end of June, I was off gabapentin completely. Traces of it should have left my system by then too.

Brain zaps stopped, weight gain seems to have halted. I don’t feel any different; in fact, I believe I’m feeling better. And I’m taking one less medication.

A win for all.

Lately I’ve grown weary of explaining my chronic illness and how it affects my life. I’m sure those of you out there who have dealt with this situation for years are far more frustrated by how few people understand or seem to have sympathy for those of us struggling every day to live some semblance of a normal life.

So I’m fighting back, harder than I ever have before. Want to know what I’m doing? Maybe something I talk about below resonates with you. One of the goals of this blog is to make those with chronic illness feel less alone. I hope I’m succeeding.

1. Walking on a consistent basis: I’m finding a way to be more active, but in a way I can go at my own pace and have measurable goals. My father, at 69 years old, runs a 5k about once a month during good weather. I’m going to try walking in some of them. For many healthy people, this doesn’t seem like much of a “thing”, but we all know how challenging any kind of exercise can be for someone with a chronic illness. Can I walk a 5k (3.2 miles)? I’m not sure. I need to test my current abilities, and then I need to assess how I feel the next day. I won’t put pressure oh myself to try to get the distance. If it doesn’t even happen this year, that’s okay.
2. Taking control of my meds: I was on a bunch of prescription meds last fall and winter. I don’t think any of them were helping me. So, together with my doctor, we’ve made a schedule to slowly ramp off everything I can. When I’m done, I’ll be taking Synthroid, which I have been since 1998, Wellbutrin, which I’ve been taking since 2005,  and birth control pills. No “fibro” drugs, no extra antidepressants, no drugs to help me sleep.
3. Watching the amount of sleep I’m getting: Since I’ve gotten off Effexor the amount and quality of my sleep has risen dramatically. Mostly gone are the endless days of four or five-hour nights; of not being able to sleep at all. Now, as long as I’m not dumb and stay up too late, I can get between six and eight hours of sleep a night. Those aren’t all awesome sleeps that make me wake refreshed, but like I said, far better than before.
4. Looking into “partner” autoimmune diseases: Most autoimmune diseases seem to come with “friends”. I’ve already asked for testing to see if I have Hashimoto’s Thyroiditis, which it appears I don’t, and I plan to push for more testing to eliminate others. Part of that push will include a trip to the Cleveland Clinic, which will hopefully yield some answers. My husband and I did extensive research on where the best doctors and researchers for autoimmune diseases were, and Cleveland Clinic, about three hours from my home in Buffalo, seems to be a good choice.
5. Not letting anyone but me make the biggest decisions: Yes, my husband is obviously very involved and invested in the choices I’m making, but ultimately, there’s no one else who can or should be the last word on my health. I’ll talk to doctors, gather research, confer with other chronic illness warriors, and whatever else I think I need to do to improve my situation. But no matter how badly someone else wants me to do something, if I don’t think it’s right, I won’t. That doesn’t mean I never will. I might change my mind and decide to try a certain treatment or drug or lifestyle change, but it will be my choice.

What steps are you taking to fight back? Big or small, they all count. They all matter and can make a difference. Tell me about them in the comments!

Most people believe you have to stop doing things you love when you have a chronic illness. True, there will be some activities it simply isn’t possible to do with a low energy level and plenty of pain to deal with, no matter how high your various tolerances.

But a great many things can be accomplished, as long as you learn the “new” method that will work for you given your current health. If you love to go out, then do it. Just take precautions and plan ahead. Don’t spend the entire day cleaning your house and then expect to hit the town. You’ll crash. Or maybe not, but you probably won’t have a lot of fun. Instead, rest as much as you can.

Do you enjoy gardening? Then plant. But temper your expectations. Whether it’s flowers or vegetables, it may be necessary to scale back on what you previously grew. Leave part of the vegetable garden unplanted and only do those foods you love the most. If you’re talking flowers, you might have to decrease the size of your beds. I’ve let part of two of mine go back to grass so I’m better able to tend the rest. I weed when I have energy, and when the sun isn’t blazing down on me.

Is cooking your thing? Concentrate on doing one dish well, rather than trying to put out a large, several meal. Make a huge pot of chili. Don’t try to do soup, a main course with sides, and dessert. If you’re having a gathering, that’s what other people are there for – to help you. Friends and family should all know about your condition and be willing to help. If not, maybe you shouldn’t be hosting parties yourself. Why drain all your energy for people who may not be grateful?

These are just a few examples of how you can work your favorite activities into your life, even with a chronic illness. Do you have your own things that work for you? Tell me in the comments.