My life, with Fibro.

It's been a while since I wrote. I've been busy with life, having fun, flirting with gorgeous boys and settling into my new apartment. It's still waiting for the finishing touches but it's almost done. I wasn't abandoning you- just on hiatus.

Back in November, I wrote a post revealing my diagnosis of Fibromyalgia. It took me a little while to come to terms with it all and it's something I'm going to spend the rest of my life adjusting to. But I think at this point, I've finally accepted that this is what I'll have to live with. And while i hate that I'm almost 26 and living with a chronic syndrome, its something I'm just going to have to suck up and deal with.

I mentioned in that entry that they'd put me on Cymbalta- supposedly it's the miracle drug for Fibro patients according to my doctors. Bullshit. Shortly after my follow up appointment in December with my rheumatologist I came off the Cymbalta entirely. It wasn't doing much to make me feel any better anymore and I wasn't willing to up my dosage- the last time they put me on 60mgs I was practically manic and still in pain. Around the time of the appointment I'd been stretching out my doses anyway- taking one every other day and none on weekends. When I finished off the last of them, I didn't get a refill. I decided I'd had enough of medications. The pain wasn't significantly worse when I came off it and I found I was sleeping better at night. I've found through other medications I've taken in the past that I tend to take paradox reactions to things. What doctors expect me to have as side effects rarely show up and often the drugs do the opposite of what they're supposed to. While I've read about the horrible withdrawals of Cymbalta, I was lucky enough not to encounter them. For most people, Cymbalta withdrawal consists of a horrible flu-like feeling, headaches, nausea, even psychosis and suicidal thoughts. Then again, Cymbalta screwed with my sleeping patterns, made me feel exceptionally fatigued in the afternoons and didn't do much to improve my pain. Coming off it was a breeze in comparison to going on it. Apparently, most people have to take it at night to sleep off the fatigue feeling they get from it. I had to take mine in the morning because I would be wired and bouncing off the walls for the first 6 hours I was on it. I guess I was lucky with the Cymbalta- my side effects and withdrawal effects could've been much worse.

These days, I've been managing my pain through various methods- I'm on a very restrictive diet which is mostly vegetarian. I occasionally eat chicken or fish a couple of times a week (certainly far less than one serving a day) and I get most of my protein through sources such as yogurt, cheese and eggs. I avoid foods with gluten and wheat (since I'm allergic to them) and foods with a high glycemic score such as potatoes and rice. I also avoid large quantities of soy, tofu or tempeh because of the estrogen content of it. For the most part, it works well. I'll admit, I don't always eat as much as I should, or what I should so I may be slightly malnourished at times. I'm supposed to be on a regime of vitamins including a multivitamin, potassium, magnesium, fish oil, selenium and vitamin D. I'm awful at remembering to take them.

Other than my diet, I only take pain medications when I'm absolutely desperate- often times i'll use naproxen or asprin on the days when i'm more irritated than sore, or co-codamol when it starts to get painful. If I feel like the pain's worsening or it's making it difficult for me to sleep, I'll take a left over prescription of flexeril I have from when they were first trying to figure out what was wrong with me.

I've found stretching and exercising has helped tremendously. Obviously, I'm not going to be doing P90X anytime soon unless I want to end up in my bed for the next month, but walking, yoga and light pilates have definitely helped make a world of difference. Sometimes I'm too exhausted or too sore to try and walk or do yoga for an entire hour, so I'll do a few stretches and lift some light weights for about 15-20 minutes so that I at least get the muscles worked a little bit to keep them more supple.

Overall though, I've found my attitude towards it has helped significantly. By accepting it, i've become more positive about it. Sometimes I wonder if it's a blessing in disguise and if I'm soon to find out what exactly that blessing is. Other times, it makes me stronger emotionally. It makes me want to stand and fight to have the most fulfilling and exciting life I can since I have to make the most of the good days. It's certainly made me more humble and made me realize that I'm not as invincible as I once thought I was. Maintaining a positive attitude and reminding myself that there are better ways to cope with my pain than wallowing in it certainly makes life easier. Keeping positive about it myself helps those around me to be more supportive too.

My friends and family are usually quite supportive and they can see that I really do try to work through the pain, fatigue, nausea, fibro-fog etc. as best I can. There are the few people who remain skeptical and would rather call it "laziness" or "psychosomatic" simply because it's classed as a syndrome currently. It angers me to hear that. When you've lived in my body, you can tell me it's all in my head, but until then I would appreciate your respect. I wouldn't tell you you're lying if you said you had a heart condition just because I can't blatantly see it. Yes, I realize I'm very young to have what could turn into an exceptionally debilitating situation. But that doesn't make it exist any less. My great-grandmother was only 28 when she was diagnosed with RA. One of my friends was only 15 when she got it. Just because I'm learning to cope with it and manage my pain doesn't mean that it isn't there. And as far as I'm concerned, anyone who isn't going to support me doesn't need to be involved in my life.

People often ask me "What does having fibro feel like?" and it's a difficult question to answer. I usually get caught off guard and tongue tied about it. The best way I've found to describe it, is that it's kind of like having the worst flu ever. Or even more like having Mono.

Recall the worst case of the flu you've ever had in your life. The aching joints, the muscle cramping, the fatigue, the feeling of weakness, the fever, the nausea- all of it without the respiratory part. Now, that's what I feel like every day on a normal day. Some days are better than others, but for the most part, it's rare that I don't have a dull, irritating ache somewhere in my body- usually my upper back and shoulders or my legs- which makes me feel weak and unsteady. When its a little sharper and i can feel it through my whole body, I'll get nausea and headaches with it. If I get a flare up, I'm almost screaming trying to walk just a couple of feet- I practically crawl everywhere. I spend most of my time crying and not a single medication (unless you want to put me on a bag of morphine) makes the pain less. At one point back in August I had to be helped from the bed to the sofa and back again for a weekend because I was in so much pain through my hips, legs and back.

The fatigue comes and goes as well. Some days are better than others- sometimes I can go to bed at a reasonable time and wake up feeling great the next morning. Other times, I have to count the minutes before I get up because all I want to do is sleep. Then other days I can feel okay, but I'll still need to lay down and rest, if not take a nap for an hour or two before I can do anything else.

That fatigue also contributes to the well documented "Fibro-Fog." Have you ever stayed up for more than 24 hours? Remember that fuzzy feeling you got as you felt so exhausted that you faded in and out of your surroundings? That lack of concentration and that difficulty to remember even the simplest thing? That's what fibro-fog feels like. It's like trying to find things in your head that you know are there, but you just can't seem to find them because there's this heavy cloud buzzing around in there too. I like to think of it like a scene out on the Yorkshire Moors. It's incredibly frustrating. Sometimes it's something as simple as forgetting what 2+2 equals. Other times, it's forgetting someone's name, or an appointment, or an ingredient for dinner.

Sometimes the pain makes me extremely moody and snappy. The frustration of the fibro-fog, the fatigue and the pain just becomes unbearable. I try my hardest not to take it out on other people though- they don't deserve it and it's not their fault I'm in pain. The extra energy I end up exerting trying not to cry, snap at someone, or just generally be a bitch usually leads to me being extra tired by the end of the day.

You have to calculate your life based upon how you feel that day. If you push yourself too much, you'll be useless tomorrow and maybe the next day too. I try to keep as active as I can- even if I don't feel like going out for dinner with a friend, I'll still go because I know that I'll regret it if I don't. If I'm feeling too tired to out to a party, I'll often show up early and stay for an hour before heading home to my sofa or my bed. I invite people to come over to visit me a lot of the time, rather than going to theirs because I get uncertain about driving alone late at night- the fibro has affected my eyesight to the point where I'm wearing my glasses almost constantly and I get very tired, very quickly.

Some days, even just getting dressed is exhausting and painful. I'm at the point now where I've resorted to having a uniform for work rather than just a dress code. It's always the same thing- black pants, black, white or grey tank top, black cardigan and medium heeled knee boots. I know I'll be comfortable wearing it and while everyone else is complaining of overheating in the salon, I'll still be warm under my cardigan when they throw on the air conditioning since I'm usually running a low-grade fever.

I'm very sensitive to temperature changes and touch these days. While I used to love the extremes of heat and cold (and I do still love the extremes of heat) I find myself feeling very cold when the temperature drops below 50, and excessively hot when it's above 75-80. I tend to keep my apartment around 67F. If I'm cold, I throw on a sweatshirt and a blanket. If I'm hot, I strip down to gym shorts and a tank. But its the most comfortable temperature for me to deal with. Even the heat from someone's touch can feel scorching hot to my skin at times. I've found over the past few years that I've been dealing with this illness I've become less and less prone to physical contact with people. The pain makes it difficult sometimes to be held or hugged and that's difficult for me- I need that physical reassurance in my relationships & friendships. I've never been a big on being touched in any manner by people, but to a certain degree- hugs, back rubs etc. from those I care about mean the world to me and I hate making anyone feel like they're the ones that hurt me when they didn't do anything at all.

It's a complicated illness to explain and it's even more difficult to understand when you aren't the one living with it. That's the best explanation I can offer. I hope it helped give you a little more of an idea of how I feel every day and why I act the way I do sometimes.