Instinct

Whenever I am in pain I find myself trying to crack the pain away. It's almost like it's instinct... after all I know that the effort is futile. The pain with fibromyalgia is muscular.. a deep tissue massage might help, but not cracking it. I recently discovered that I am not alone in this behaviour. I was talking to someone that has arthritis in her knee and it would seem that when she is in pain she does the same thing. I wonder why it is that we both try uttery futile ways to get relief.... even while knowing that it won't help.

Facts About Fibromyalgia

I keep seeing the ads for Lyrica and for the web site MyFibroRelief. Now the second web site is really just a way to introduce you to the disorder and to try and get you to ask your doctor for Lyrica. Generally I prefer I web site that is not quite as biased and not presented by a pharmaceutical company but it was still informative and I wanted to pass on some of the information.

Fibromyalgia Facts

1. Fibromyalgia is one of the most common chronic widespread types of pain in the U.S. The condition affects millions of people.
2. Fibromyalgia pain is widespread and persistent. There is often muscle tenderness. Plus soreness or burning pain. Which often causes a lack of sleep. Sometimes, patients also have stiffness in their muscles or flu-like aching.
3. Fibromyalgia is thought to result from neurological changes in how a patient perceives pain.
4. To be diagnosed with fibromyalgia, patients must have widespread pain lasting at least three months. Plus pain in at least 11 of 18 parts of the body known as "tender points" (according to the American College of Rheumatology).
5. Women are much more likely to report having fibromyalgia than men. 80% to 90% of those diagnosed are women. Although both men and women can experience fibromyalgia.
6. The outlook for people with fibromyalgia has never been better. Exercise, diet and rest can help manage this condition. So can counseling and medication.
7. Several types of health care providers are available to help manage fibromyalgia. These include rheumatologists, primary care physicians, nurse practitioners, neurologists, psychiatrists, physiatrists and pain specialists.
8. Fibromyalgia may place large financial costs on patients and society. It may cause lost work days. And lost income and disability payments.
9. As with other chronic pain conditions, fibromyalgia is not a psychological condition, it can impact mood and cause distress. In that way it is similar to other chronic pain conditions. However, the majority of sufferers do not have mood-related disorders.

The main reason that I wanted to post this information is for point #9. While growing up I was repeatedly told that the pain was simply growing pains and would disappear.... even after I stopped growing. When I was in London I was referred to a rheumatologist and after 18 years finally got the diagnosis. Then I moved to Peterborough and it was like a trip back in time. I was told that I would never get treated for it here. When I was on an LOA from work I was told Fibromyalgia doesn't exist and was all in my head. I was told that it was a symptom o a psychiatric disorder and as a result was put on the wrong medication... They were treating depression... Too bad I wasn't suffering from depression. So to see the point made that it is NOT a psychological condition makes me feel validated. And I want to emphasize that to others who may know someone with Fibromyalgia or may be suffering themselves.

The Life of Pain

Pain is part of my identity... more so then most. Tonight I am really reminded of how much the Fibromyalgia controls my life. I am currently fidgeting a lot. For some unknown reason I keep thinking that if I can just crack the joint the pain will go away. But since the pain is really in the muscle obviously it isn't helping. Right now I think it has flared up because of the change in weather and because I have been pushing myself way too hard. Add to that the other major symptom: fatigue and it makes life a challenge.

It's pretty frustrating to be limited like that. You feel tired all the time and would give anything to feel rested. When you get fatigued it impacts all aspects of life. Your reaction time slows time, your cognitive ability gets impaired and you don't want to go anywhere or do anything. You just want to sleep.

No one likes to be in pain either. You end up irritable and all you want is for the pain to stop. Tonight I was taking Tylenol 8 Hour in an effort to at least lessen the pain. It never really goes away though. I also go to the chiropractor biweekly in an effort to at least keep my spine in line. It does help the pain as well.

When you have a chronic pain condition you also feel pretty isolated. People just don't understand. Fibromyalgia is also an invisible disease so people forget that you have more limitations then other people. I've had doctors tell me it's all in my head and is just depression. So even on the bad days you hide it from the world, grit your teeth, and push forward. The cardinal rule of pacing yourself just doesn't happen because all too often in the real world it is just not an option.

Fibromyalgia Flare-Up

Saturday I was at work until 9:30. Sunday I had to be back in at 9:00 a.m. As I am sure you can imagine those numbers don't go together very well. I went to bed at midnight and with the changes in weather... or stress,... or whatever the Fibromyalgia was really acting up. It was worse then it has been in years. I spent the entire night just tossing and turning. I couldn't sleep and was trying to get rid of the pain to no avail. Plus I had forgotten to take my pills which didn't help. I kept getting up and was wandering around. Azrael was always lying on the floor at the end of the bed and he would follow me around. He's like my guardian. When I go to bed normally he will lie in the doorway and watch me.... And then as soon as the alarm goes off he knows I am awake and will get his daily quiet time with mommy. Any ways that night I just wasn't getting any sleep and was in a tremendous amount of pain. I got about 2 hours of sleep before the alarm went off. I had so much work to do that I couldn't call in sick. It was a rough day and I was pretty glad when it was over. the pain isn't as bad now. It's still there but is much reduced now.

Hiding Behind a Mask

I've come to the conclusion that I don't need to watch soap operas. My life always seems to have enough excitement in it. I suppose the upside is there there is never a dull moment. But some days I would like peace and quiet.

The other day I had someone say I look more relaxed at work. Yes the LOA did some good things for me... it wasn't all good... but it did give me a chance to get some rest. Aside from that it's actually surprising that I look more relaxed. Guess I do a good job, most of the time, of hiding behind a mask. I know we all wear them at times to hide from people or to hide from the truth. For the most part I try to leave everything at home before going to work but that's not always possible. Of course, even when I do show the stress I make it appear like it's related to work. But again that is just a mask. I know I can get the work done... well along with Pat I can any ways. Yes I'd like more time for training but in terms of the mandate it will get done. The truth is (and you'll probably never hear me admit to this again) that I am scared to death. Fear of the unknown.... fear of the consequences.... I am so used to being the strong one... the survivor.... and now that may not be possible. I'm not as strong as I thought I was.

I also feel extremely alone and isolated right now. I know that everyone has been sympathetic to the fact I likely have to have a bone marrow biopsy done and have been trying to tell me it's likely something small. Yes I am comforted by the fact they didn't feel I need emergency treatment but it's a small comfort. And no one really understands what I am going through. I don't look sick so people don't realize what I'm going through. There's the chronic pain from the fibromyalgia. Any idea what it's like waking up in the morning in pain and going to bed still in pain? A life ruled by pain.... but you never look sick. I still look relatively healthy. Add to that 2 years of fatigue. Fatigue that has caused me to completely withdraw from everything. Imagine, for a moment, what it is like to go to work for 8.5 hours, come home and be too tired to cook dinner. It's not like I work in a factory or anything that is labour intensive. In that respect I have a pretty cushy job. Even if I do have the energy to cook I run out of energy while eating. It's a rough place to be. I am still too prideful to admit I need help.

As I have said before I had the bloodwork done in February (or maybe March) from the rheumatologist. They had to repeat the tests. The results came back the same. My white blood cell count and my platelet count were both low. I suspect that when they redid the tests in May my red blood cell count was also low. When they did the first tests I was taking 6x the recommended dose of iron and the results only came back as being normal, not high. My family doctor said they "wanted to check to make sure the bone marrow was still producing blood cells." Now the fact that is even a question is pretty frightening. If it were just one blood line that came up low then it would be more likely that it is a vitamin deficiency or something minor. But it's not. There aren't nearly as many things that cause more then one to be low. I have to go back to the rheumatologist but I have no idea if he got the results from the third test. A month later and the fear has not gone away or lessened any.

If that wasn't enough Adam stopped by with mail today. One of the items was from the cancer research society and it said that 1 in Canadians will be diagnosed with cancer. Now that's inspiring. Definitely not going to reduce the anxiety level and fear with that news. Since as much as I want to deny it that is one of the many possibilities.

And now it's time to put the mask back on. The one that says everything is fine... I'm doing okay... and I am strong. No fear, right?

Fibro's Back with a Vengeance

Until today I don't think I had realized how much better I had been doing compared to where I was 4 years ago. I'd forgotten just how much pain I was in. And now it's back... I guess I really shouldn't be surprised by the flare-up and should consider myself lucky that overall it has been manageable for the last 4 years. The current flare-up could have been brought on by any number of factors: the medications, irregular sleep patterns, not getting enough exercise, stress, etc. For anyone that doesn't have a chronic pain condition count yourself lucky. They say fibromyalga is the "invisible disease" because you don't appear sick. You're just in constant pain and low on energy. I keep cracking my back hoping for some relief of the pain but since it's not in the joints it doesn't help. For most of the day I was curled up with Azrael on the couch. It hurt too much to do anything else. Been a long time since I hurt like this. I'm hoping it's short lived since, as I've already been told no doctor in Peterborugh will treat it. Without a family doctor I can't go see a specialist either. It's a no win situation. All I can hope is that tomorrow is a better day, with less pain than today.