Fibro fatigue? I forgot

I think I’d forgotten fatigue was a main component of fibromyalgia. The pain can be so all-consuming at times. Do I take medication or try to manage it through other techniques like meditation? What time is my physical therapy appointment? Am I sitting with correct posture, or is this going to hurt later?

Lately, the fatigue has really been getting me down.

Sunday went something like this.

9:45 am: Oh great! I woke up before 10 am without the alarm. I must really be making progress with my sleep, I’m so excited.

11:00 am: Well, I’m kind of sleepy. The couch looks really nice for a nap right now. But I’m trying to cut out daytime sleep, so I’ll avoid it.

12:00 noon: Okay, maybe reading will distract me from wanting to sleep.

1:00 pm: Right-o, I have to get ready for an appointment. That should keep me occupied.

2:00-4:00 pm: Appointment happening. My eyes are a little blurry towards the end, and I’m having some trouble focusing. Is this fibro fog, fatigue, or something “normal”?

5:00 pm: Food sounds really good right now. I’ll do that.

6:00 pm: Back at the house. What to do?

6:05 pm: Oops, I sat with my neck turned to the left while I was listening to someone. Now my whole left side hurts. Ow ow ow.

6:30 pm: Shit, this really hurts. I guess I’ll take some medication.

6:45 pm: And the meds are making me drowsy. Well, I guess this is as good a reason as any to take a nap.

9:00 pm: Woke up from nap. Dammit, this is really going to throw my whole sleep cycle off.

9:30 pm: Better head towards getting sleepy – maybe read a book or something.

11:00 pm: Sucked into the internet vortex of webcomics, news articles, and random nonsense.

12:00 midnight: I should probably go to bed, but this is really interesting.

1:00 am: Is it 1:00 already? Well, I’ll head to bed in a minute.

2:000 am: Shit shit shit, I was really hoping to get my sleep cycle adjusted. I’ll brush my teeth and such.

2:30 am: In bed. Trying to fall asleep with my new relaxation CD. It seems to be helping, although mostly right now my breathing is nice and relaxed and my limbs feel heavyyyyyyyyyyyy…zzz.

And this is the saga of my day yesterday. It really feels like I’m stuck in this endless cycle of fighting with sleep. Will it be relaxing? How to coax myself to bed on time? How to wake up in the morning before it gets really late? And of course, the struggle to avoid daytime sleep.

I’ve read all of this stuff on sleep hygiene and the like, but it’s so much harder to do in practice.

Camping and fibromyalgia

I grew up with a camping family. It’s a cheap way to go on vacation with three kids and two adults, and it’s fun as well. Sure, there were some…incidents…involving my brother setting up his hammock underneath a raccoon’s mating tree, or when a couple of squirrels fought over a cookie all night long. They make good stories now, and I guess maybe they built character?

I think a good analogy for hotels versus tents that it’s sort of like the difference between driving and walking. If you drive, you’re better protected from the elements, it’s usually pretty comfy, and you tend to get places more quickly. If you walk, you get to notice more. Since it takes time to walk by that house on the corner, there’s time to notice the chihuahua in the window hopping up and down and barking like mad. You can notice when the tulips start coming up, and whether someone new has moved in to a house. It’s more relaxed than driving.

Camping is similar. There’s time to sit out talking by the campfire (it smells so good!). I like listening to the birds in the morning, or watching the sun come up. And the stars are amazing!

When I got diagnosed with fibromyalgia, I thought my camping days were over. Sleep on the ground? You’ve got to be kidding me. Set up a tent, carry gear, ride in a car for hours to get somewhere? Impossible.

I think it probably was pretty impossible when I was first diagnosed. I had trouble going shopping in one store, and I was pretty much limited to half hour car trips. I also stopped exercising because I was afraid of pain, which made it even harder to get around. At the moment, I’m definitely not “cured.” I still have aches and pains, and when I have a flare-up it is, well, agonizing. I really want to make camping work, though. I enjoy it, and it’s a cheap way for someone living on disability income to go on vacation.

I think the key to making camping is going to be having the right gear and being prepared. (Although really that’s the key to any camping experience. You do not want to be cold and wet.)

Here’s my camping plan, complete with accommodations and ways to work around common fibromyalgia issues:

1. Getting there: long car rides are tricky for my back and my body. My doctor has recommended that I take frequent breaks. I think she said I should take 15 minute breaks ever hour, although that adds a lot of time to a trip. Whatever the case, I try to get out of the car and stretch frequently. Solution: take frequent breaks and stretch.
2. Making sure I can manage the gear (e.g. setting up the tent, loading the car, etc.): This is where I probably need an ally to help me. I can do some of this, but no matter what your ability level, setting up a tent alone is tricky. I want to go camping with friends anyway, so this is pretty much taken care of. Solution: recruit a friend.
3. Getting a good night’s sleep: Sleep is such an issue for people with fibromyalgia anyway. I think some people even use it as part of the diagnostic criteria. I managed to get a foam camping mat that is self-inflating and 3.5 inches thick. It’s not cheap, but I think this is one of the most important pieces of equipment. I do not want to feel every bump on the ground when I’m trying to sleep. I would also recommend checking night-time temperatures for the area you’re going to be camping. In my region, it usually drops about 20 degrees overnight. So if it’s a comfortable 65 degrees outside during the daytime, you’re going to be sleeping in 45 degree weather. I have a down sleeping bag from when I was a kid. I think any kind of thick blanket or comforter can work, unless you’re going in winter or something. Camping can also be noisy. I’m used to forest noises (birds, the occasional rustling), and I find them quite soothing. If the dawn bird chorus bothers you, you might want to get some ear plugs. If there are any sleep issues that you usually have at home, think about how you usually deal with them and try to mimic it when camping. Solution: Plan ahead, invest in a good sleeping mat, stay warm, and be prepared for things like noise and temperature.
4. Morning stiffness: This is usually an issue for people with fibromyalgia, even when sleeping in a bed. Make sure you know some good stretches, and bring anything you normally use to deal with morning stiffness. I find menthol rubs such as icy-hot or Tiger Balm helpful, and Thermacare wraps are a-MAZ-ing. If cold is your thing, try bringing a small ice chest with some ice packs in it. It’s also good to bring any pain medication you have. Solution: stretch and use heat or ice therapy, as well as anything that usually helps.
5. Other issues: All campers have to be prepared for certain things. Does your campground have showers with hot water? If not, investigate how other people keep clean. Do you have gear for inclement weather? Do you want to prepare food or eat out? Don’t forget to bring things like sunscreen and mosquito repellent. Check out camping guides and books before you go. Also, remember to bring anything that’s part of your everyday treatment routine – plus things for flare-ups – with you. Don’t forget your medication! Solution: Read up before you go, prepare for the unexpected, and bring necessities such as your medication with you.
6. Don’t forget to have fun! Otherwise, what’s the point?

I tried a test run of my set-up in the backyard last night. It worked well, although I did have some morning stiffness. I’ve been stretching, and it seems to be going okay.

I’m going for a “real” camping trip Wednesday night – beach, here I come! So this is also a roundabout way of saying that there will be no Wednesday update. However, I’ll try to write up some after-thoughts about camping on Friday. Maybe I’ll post some pictures too, who knows.

“Western” medicine, alternative medicine, complementary medicine and my body

I feel like their is a war waging on the battlefront of my body. I’m not talking about the pain or fatigue I feel from fibromyalgia. I’m not talking about migraines, or mood disorders, or any of that.

I’m talking about the way medical providers (“Western”, alternative, and complementary), the media, drug companies, and even sometimes people from my everyday life try to co-opt decisions about what the best treatments are for my body. Often, they don’t agree with one another. Then I’m left stranded, trying to figure out what the best course of action is. It is not therapeutic, and it doesn’t help.

Some (not all) “Western”/modern medical providers are all about science by the books. I think fibromyalgia threatens them, because the diagnostic tools basically involve ruling out other things and then poking the patient in 18 places. If 11 out of the 18 hurt (divided in certain sectors of the body), then it’s fibromyalgia. Even though fibromyalgia has been documented as a real condition in countless places – and new clinical data shows that fMRI’s can pick up signs of fibromyalgia in the brain – many doctors are only now accepting that fibromyalgia is a real condition in the way that arthritis or diabetes is.

“This is the crux of it, the reason more than a handful of physicians have such disdain for FM and its sufferers: they don’t know how to see it, how to measure it or how to effectively treat it.  In short, FM is a mystery many physicians would rather not contemplate…. ‘As treatments have been developed that work fibromyalgia is being more widely accepted as a legitimate, scientifically credible disease.’ In other words, FM might become increasingly viewed as legitimate because physicians are becoming better able to do something definitive to attenuate the suffering.”

These are the words of medical doctors (MDs) who practice/research at Johns Hopkins and the University of Michigan. Wait, wait – the people who diagnosed me with this syndrome might not believe that it’s real? When I was first diagnosed, my rheumatologist basically gave me the following prognosis: you may never be able to work full time. We don’t really have any medications for this. Physical therapy might help. Have a nice day, see you in six months. (Note: I do not see that doctor anymore, and have found much better ones.) I did end up going on some medications that seem to help, which I’ve added to my cocktail of mood disorder medications.

Physical therapy most definitely helps, as do other more “alternative” or “complementary” medical practices. Reiki, light touch massage, integrative manual therapy, meditation, healing drumming…all of these things have helped enrich and improve my quality of life. They also help alleviate mental and physical suffering.

The problem is that there are skeptics in both sides. Western practitioners often don’t “believe” in reiki, because of lack of clinical trials. The same goes for a lot of other alternative/complementary techniques. And a lot of people I know from the alternative community have their own prejudices against Western medicine. There are too many side effects, it’s too intrusive, the drugs often do more harm than good. I am not saying that alternative medical practitioners urge me to go against the advice of my doctor. But when I tell people the medications I’m on – it’s quite a cocktail – there is sometimes a general pursing of the lips. A certain look in the eye that says, “I wouldn’t take all those chemicals.”

Ah yes, the Great Medication Debate. Western doctors often don’t like to prescribe pain medications, as they can be addictive. Emergency room doctors sometimes treat fibromyalgia patients as though they’re drug addicts. As already mentioned, alternative medical practitioners have their own skepticisms about the effectiveness of prescription medications. Meanwhile, I run across the occasional friend who says something glib like, “I really don’t like taking medications.” Guess what. I don’t like taking them either. I take them because they help, even though there are sometimes really terrible side effects.

So what’s a girl to do? I’ve received positive help from medical practitioners from all practices. I’ve also received some care that just hasn’t helped. My social support network is, for the most part, very supportive.

You know what would be really helpful? If I didn’t have to defend one set of medical practitioners or traditions to practitioners of another tradition. If they worked together, and I received holistic advice that integrated healing modalities from a range of traditions.

This is my body. MY body. If you are going to be my medical provider, treat it with respect. Please leave your personal baggage at the door.

(Note: I’m not targeting this at a specific person. So if you’re someone I know, and you’re wondering if this is about you, it’s not. ^_^)

When medicine works

When I was first diagnosed with a mental illness, I had the general mindset that a doctor would hand me some miracle drug and everything would be better. (After all, those Prozac and Zoloft commercials seem to imply something of that nature.) I quickly found out that finding the right medication is a trial-and-error process, and that it usually takes about 6 weeks to find out if one medication works or not…and then you have to decrease it and take another one. My psychiatrist – thankfully – used a very scientific method of only changing one thing at a time. That way, he could tell it was the Topamax that made my face itch, and not some other drug. The whole process took about a year and a half, and oh what a ride that was. But that’s another story.

I learned that while medicine can help, there is a lot of patient-managed care that needs to happen. Even though I have my medication cocktail sorted out, I still need to take my medication, practice coping mechanisms, notice when I’m having a flare up…

I guess I’m just used to having conditions that no one can really fix. Migraines, IBS, Bipolar Disorder, Fibromyalgia…fun little labels that mean I get to spend a lot of time on medical issues, going to the doctor, stretching, and trying to keep my body and life in balance.

So imagine my surprise recently when three medical treatments seem to have just worked. Like, really worked. (I hope I’m not jinxing anything by saying this.)

Treatment one: occlusal guard, or night guard. There is conflicting evidence about whether or not night guards can help night-time teeth grinding. Some people say not to use them if you have sleep apnea or other sleep disorders. (I suppose fibro might fit into that category.)

Still, I have a pretty bad time when I grind my teeth. It’s usually when I’m stressed, and I end up with a lot of jaw pain that often leads to migraines. I was a little skeptical, but since my insurance covered the night guard – wonder of wonders – I decided to try it.

It took a little getting used to, but I’ve slept better than I’ve slept in months – years, even. I’m not saying that this will work for everyone, but I think that grinding my teeth was probably causing some sleep disturbances as well. It is wonderful.

Treatment number 2: my wonderful, wonderful podiatrist gave me diluted alcohol shots to help with my Morton’s Neuroma. The shots are supposed to help break down excess tissue build up to relieve pressure on my nerve. I’m not sure exactly how it works. It seemed to get better at first – although my foot was still numb and tingly, but at least not in horrendous pain. Then the pain came back for a few days, and I was really worried I’d have to have surgery. Now, there is an occasional pang, but the pain is almost completely gone. I’m pretty sure that after a few more treatments I will be good as new. (Again, hoping I don’t jinx this.) Having a medical issue that’s treatable is just amazing to me.

Treatment number 3: custom-fit orthotics in my shoes. I suppose this doesn’t actually count as something that *poof* makes a problem go away. But I now have orthotics in my shoes to help provide extra arch support and deal with my flat-footedness. They make such a difference. I’ve even gotten an extra pair of shoes to wear in the house (ones that aren’t dirty on the bottom) so that I can wear them all the time. My feet hurt less, and I feel more in balance.

I guess these experiences have restored some of my faith in the medical profession in general. Not that I discounted medicine before – I’d just begun to expect treatments to only half work. Or to have a medication that works, but has horrible side effects. This was a pleasant surprise.

State of my body

My body is all kerfuffled at the moment.

I have a Morton’s Neuroma on my right foot, which basically means that the tissue around one of my nerves there has thickened. As you can imagine, this is fairly painful. I started having a really bad pain flare – triggered by the foot pain, but spreading throughout my body. Add to that some depression due to all the pain…

I managed to see a podiatrist, and he started giving me diluted alcohol injections to break down some of the tissue. Or something. Don’t ask me exactly how it works. This has improved my mood greatly in some respects, as I’m not in as much pain. However, my foot just feels weird sometimes. Like there’s this ball of tissue that I can’t feel, so I don’t quite know where to put my weight. I’m hoping it’s not permanent or anything. The thought that it might be is slightly worrying. I need to call the podiatrist, I suppose.

Anyway, I’ve still been having a continuous pain flare of sorts. It varies in intensity. Not enough exercise, too much exercise, being thrown off balance because of my foot…it’s hard to get my body centered again once it’s gone into a really bad flare. I consoled myself yesterday by buying three new books, and I have a pile of books I want to reread. Currently, I’m alternating between speculative fiction and books on postmodernism. My dog is also an excellent console-r and nurse, as he likes to snuggle. Family and friends are being very supportive.

All in all, it could be worse. However, it is one of those things that’s just very frustrating. I was doing so well. I know this state of affairs is only temporary…

This could be seen as a roundabout way of saying that, while I’ll try to stick to schedule, updates may be slightly sporadic. When I’m in a lot of pain or I’m doped up on painkillers, it’s hard to write a coherent post. I have a few posts saved as drafts for occasions such as this one.

Mindfulness on drugs

Drugs and medication have an interesting way of interfering with my mindfulness practice.

I spent much of Tuesday and Wednesday drugged on Tramadol, which I’d taken to deal with the pain/fear spiral that was going on this weekend. The Tramadol made me groggy, sleepy, and ill-coordinated. My brain felt like someone had shoved cotton balls into it, and I couldn’t get to all the important bits.

I suppose the Tramadol did its job in other respects: I wasn’t in as much pain, I could walk (or hobble) when needed, and I wasn’t having panic attacks from fear about how long the pain would last. The pain was not out of control.

I decided to try some mindfulness meditation to cope with my relationship to the pain.

When I started doing some breathing and focusing inwards, I really felt as though my brain was on some bad carnival ride. When I closed my eyes, I saw a pink trapezoid that kept moving and rolling as though it was in a fun house. There were pink elephants and other objects that kept shifting in and out of view.

When I tried to focus on my body instead of on the happy-fun-trip going on inside my mind, it was like wading upriver through sludge. I could kind of feel myself through a dim haze, but it was a lot of effort. The pink elephant kept calling me back.

Eventually, I fell asleep.

I suppose the mindfulness didn’t work in the way I intended or expected, but it did give me insight into the workings of my brain when I’m taking “heavy duty” painkillers. (Tramadol is a “mild narcotic.”) It feels like the medication is closing a door on the parts of my mind which might experience pain. Clobbering them over the head and sticking them in a closet, if you will. Then it distracts the rest of my mind with smoke and mirrors.

This doesn’t usually happen – as much – when I take Tramadol. I think it was because I took a larger dose than usual. However, the feeling of “wading upriver” when trying to practice mindfulness while on Tramadol has happened before.

Fortunately for me,  I managed to see a podiatrist yesterday. I’m narcotic-free today, and I feel like I have my mind back.

Note: This is another early post (Thursday instead of Friday), because it again relates to how I’m doing right now. We’ll see what the weekend holds, and if I do a “weekend extra” or not. It probably depends on how much pain I’m in, or what medication I’m on.

Unfamiliar pain, fear and pain spirals

I think I’ve got a pretty good handle on coping with fibromyalgia-induced pain. My bipolar meds are fine-tuned enough that it’s usually under control, and I know all the warning signs and have my list of coping mechanisms ready. I do what I can to prevent migraines (wearing sunglasses, avoiding too much dark chocolate, avoiding other triggers), and have medications that usually work.

I like to think that I kind of have things “under control,” or at least well managed.

Recently I got hit with a new kind of pain. I’ve had occasional foot pain this fall, which got better when I switched shoes and insoles. On Thursday, though, I found that the occasional pang in my right foot was interfering with my ability to walk…causing me to limp…causing me to throw my body out of alignment…causing everything to hurt (an 8/10 on the “pain scale”)…causing my mood to just come crashing down. I worried about when it would end, how I would cope, and just wanted to scream. I tried doing mindfulness meditation. It helped a little bit with my mood, but I really became aware of just how much I hurt. My pain started feeling like a Jackson Pollock painting. (You know, the ones with all the paint drips everywhere?) It was a discordant symphony of pain – stabbing, burning, crawling, icy, hot, and on and on. I have a lot of experience with pain, but I had never felt anything quite like this.

There is something about unfamiliar pain that is much scarier than pain you know. There is all this emotion tied up with the pain. “When will it end? Is this something acute or chronic? How much will treatment cost? How will it affect my daily life? Am I going to be able to exercise? Am I about to go into a bout of a bipolar flare-up too? I don’t think I can take much more of this…” With fibromyalgia, it’s mostly, “Oh, this again. I know how to deal with you. If you get really bad, I’ll call my doctor.”

I woke up with pain yesterday morning, and managed to get an appointment with my physical therapist right away. She helped a lot, put tape on my knees, etc. I was pain-free all day (always a plus). Later in the evening, though, I found myself with stabbing pain in my foot when I was sitting at the computer. I quickly found the pain spreading throughout my body, and consequently spreading through my consciousness.

I ended up in bed, sobbing and having a panic attack. It was not a fun night. I’m worried about the potential cause, how long it will take to treat it, etc. I really enjoying walking as exercise, and I’m afraid my body will suffer from not being able to get out. I have to climb stairs to get to my bedroom and my office. My brain went on and on into worst case scenarios and pain, and everything started to spiral out of control.

I tried Tylenol, with no luck. I tried my usual dose of Tramadol (25 mg). I tried the higher prescribed dose of Tramadol (a total of 50 mg), and that eventually started to dull the pain. It also knocked me out, which meant I didn’t have to think about the pain for about eight hours. Sleep helped, too. This morning, I’m achy and the only real pain is in my foot.

I managed to get an appointment with a podiatrist my friend recommended. The appointment is in 13 days. I’m going to try not to catastrophize about what might happen, and try to be in the moment.

Here’s hoping for inner strength and compassion towards myself.

Early post (Tuesday instead of Wednesday) because I feel like sharing now instead of later.

To medicate or not to medicate

A friend of mine passed on an interesting article from the New York Times about migraines. (I’m posting it as a “special weekend edition,” as I don’t know how long the article will be freely accessible online. With the newspaper industry the way it is, I think the NY Times charges for older articles.)

“Some early data suggests that if you let headache pain go without treatment it can lower your threshold for pain down the line,” Dr. Saper said. In other words, untreated headaches can make you more vulnerable to pain.

On the other hand, if you are taking over-the-counter or prescription painkillers two to three days a week for months on end, the medications you are taking to dull pain could worsen your condition. You may then start to experience medication-overuse headaches — a risk for migraine sufferers.

I think this is one of the really tricky things about medications. Not only do you have to find the right medication that works for your body, you also have to figure out the right dosage. How much medication is too much? Am I able to lower my dosage safely, or will I have renewed symptoms?

There is also a lot of controversy – particularly in alternative medicine settings – about taking prescription medications at all. I know many people are uncomfortable with taking medications, often particularly with taking painkillers. I can understand this, and yet many people also don’t have a choice about whether or not to take their medications. For example, someone with HIV/AIDS should not go off their anti-retrovirals.

It’s particularly interesting to see this article’s mention of the positive/negative effects of medication on chronic pain. Pain is such a nebulous thing anyway. Different people have different pain thresholds, and chronic pain takes the issue to a whole new level.

How do we treat pain in our society? I think it’s certainly telling that we have medications called “painkillers.” Yet untreated pain, as mentioned in the article, can negatively affect a person’s quality of life. Certainly, having pain all the time – particularly with no effective coping strategies or pain management – is really, really terrible.

Researchers are learning that pain and the medications used to treat pain can potentially change the biology of the brain.

Receiving good treatment can help you function more effectively, and will probably also save you money over the long term. And if you have health insurance, it should cover most of the relevant medical evaluations and treatments.

The question of universal health care aside, I think the key thing this article mentions is “good treatment.” The article continues by talking about effective strategies for talking to your health care provider about migraines/chronic headaches, as well as some supplements migraine sufferers may find helpful if they’re going the “alternative” route.

I’m glad that researchers are studying the effects of medication, unmanaged/untreated pain, and treatment strategies on migraines. I’m interested to see what further studies reveal. I feel like the study and article raise a lot more questions than they answer.