Everything seems to be constantly in flux. I have one health crisis after another...often several at a time. Here's what I've been dealing with lately:
-Frequent, chronic migraines. I'm seeing a headache clinic for this and experimenting with new medications. No more Topamax (i.e. Dopamax--makes you tired and dumb). Trying Lamictal for prevention and experimenting with Relpax and Tramadol for breakthrough migraines. I'm also in physical therapy. The PT involves a technique called dry needling. I've been very interested in trying this treatment, but it can take some time to work, so I'm being patient. The visits are a bit painful, as a small needle is worked deep through my muscle contractures. But it's nothing I can't handle. About a 5 out of 10, I would say.
-Severe GI problems. I've had some severe abdominal cramping and bloating. I've had to return to the "Eating for IBS" diet, along with a new one called the FODMAP diet. My symptoms are much better with restricted eating, but I'm sure this diet isn't great for my cholesterol, because it involves a lot of simple carbs and very little fruits and vegetables. Hopefully, this will be temporary. When this problem first came on, I had to be checked for an abdominal aortic aneurysm. The pain in my abdomen was very severe, and I could feel my pulse like a second heartbeat in my stomach. I tested negative for this, which is good. I was also tested for Celiac Disease, which runs in my family. I tested negative for this, too, which is good. It just means that I need to manage these symptoms with diet and supplements, because the doctors don't know how to help me without more of a diagnosis.
-EDS pain. My joints hurt, more often, and more severely than usual. In particular, my knees, hips, and shoulders are the most painful. There's not much to do for this. I do wear knee braces when needed to help hold things together. There's usually no actual joint injury. Just joint pain due to the joint being too loose.
-Fatigue. This has been in flux. Some days, I thought I was doing a lot better, but I seem to have come back down. So, no real progress for this. My only treatment is caffeine pills, cause Provigil is too expensive. It also seemed to stop working after a while.
-Muscle fatigue. This is a new one. Due to EDS, my muscles get sore very easily. Unfortunately, the day after using a muscle, I'm experiencing muscle fatigue, where the muscle stops working. Nothing to do for this except rest. Most often this is in my hands or forearms. At times, I drop things frequently as my muscle gives out. I can't seem to crochet anymore due to how quickly the muscle becomes fatigued.
-Sleep. I'm always tired. But I'm having trouble sleeping through the night. My sleep is often restless with multiple wake-ups. I need extra sleep since the quality of sleep is poor. I would do well with an afternoon nap, but my current lifestyle doesn't allow it.
-Mood. As always, with many health problems waxing and waning, my mood seems unstable lately. I just have days when it all seems impossible and pointless. I just feel so hopeless. It doesn't seem right, since I've been able to make so much progress in the last few years (no wheelchair, much less time in bed, starting to work a few hours a week...). But it's all so hard. Every day is so hard. It's an ongoing problem for me. Every day is such a challenge, that I just get discouraged. I know that life will never come easily to me. Some things get better; some get worse. So unpredictable. But at the same time, it feels so much the same. Always fighting some new symptom, or returning symptom. Always trying to pull myself through another day. Trying to smile enough to not be completely unpleasant to be around. Trying not to cry about it too often. I do have supportive people in my life. But if I lean on them all the time, it wears on them a lot.
-Coping. Other than that, it's just dealing with life. Cooking. Housework. Part time work. Loneliness. Trying to keep it all together. It's so overwhelming at times. And it's hard to keep up the appearance of being healthy, happy, and normal, when everything seems to be falling apart.
That's the update. Thanks for listening.
