Thursday, May 13, 2010
Taking over....
It's been a bad week. I'm starting to let this take over my life. I'm living my life like I already have a diagnosis. I think about it all the time now. I never realized that I was in pain all the time. It is all the time. I have always just ignored it. Right now I'm trying to remember when and where I feel the pain so that I can tell the Dr. the next time I go, so instead of dismissing the pain I'm taking note of it. It's getting to me. It's very overwhelming. At work, my shoulders, head, face, back and hands hurt. At home again it's my head, back and then my legs. I'm exhausted and confused most days. It's awful. I think I need a break. For the rest of the week, I'm not going to think about the fact that this might be my life. I'm just going to do what I've always have done. Dismiss the pain and go on. That's what they do with Cognitive Therapy anyway. Teach you to just deal with the pain. I think I've already learned how to do that. It's just pain, it won't kill you! No it just makes you miserable. I'm tired of being miserable. I'm ready to fight!
Monday, May 10, 2010
Now What?
Okay, so it's been a week. I've been taking the medication as the Dr. prescribed. I have noticed that I am sleeping better. I have noticed a few of the side effects, like the pain in my stomach. Yes it does give you stomach cramps. Tingling in my feet, kind of like you have been sitting on them for a long time. I'm also noticing congestion, but I could actually be getting an honest to goodness cold. Other than that, nothing. I'm still tired all the time. My body still aches. Oh I do feel a bit more confused. Yeah like I really need that! I want to know for sure if this is what I have. I don't like not knowing. If I have it then I can logically work on dealing with it. If I don't then I can work on figuring out what is wrong. I'm a logical person. This is not logical. No known cause. No known cure. No known definitive diagnostic test. I think that's why it has always sounded so crazy to me. But this pain and fatigue I'm feeling is not crazy. It's real. The hazy cluttered thinking. That's real. The pressure in my face and head, also real. I know it's not psychosomatic. If it were I would have willed it away ages ago.
Thursday, May 6, 2010
Topamax?
On Mon. my Dr. (or should I say his nurse) called to tell me my brain scan was normal. Which surprised me I always thought I was crazy. Or maybe it just doesn't show on a scan..... hmmmm. Anyway, she said "The Dr. want's you to take Topamax (Topiramate) for your headaches, and come and see him in 4 to 6 weeks" HUH? For my headaches? As I'm talking to her on the phone I do a quick Internet search. I'm informed that Topamax is an anti seizure medication. I'm totally confused now. So I ask the nurse. Is the Dr. going to address all the pain I've been in. "Pain?" she says. Now I'm just irritated. Again I feel like no one is listening to me. "Umm Uhh, let me talk to the Dr. I'll call you back." After she hung up I was dejected. Here I thought the Dr. understood what I was saying. I decided to look further into this medication Topamax. It's also used to treat Migraine's. Okay I have had Migraines, but I really haven't had one in a long time. A few years actually. So now I'm really confused. Time to do some more digging. What do I find out? Some Dr. use it to help patent's with Fibromyalgia. It's not approved for the treating of Fibromyalgia at this time. Since I have the headaches, I guess he figures we need to deal with that first. Who knows? Since he didn't talk with me directly.
Six hours later the nurse called me back and said very bluntly "The doctor just wants you to take the Topamax and see him in 4 weeks." By this time (after stewing for 6 hours) I'll try it. So I give her my pharmacy number and pick up the prescription. One of the side effects isn't bad. Weight loss. The others are. Blurry vision, kidney stones, dizziness, fatigue(like I don't have enough of that), confusion(or that), tingling in extremities etc... etc... . that's why I hate taking anything. It can help some things but then create a whole host of other problems. Sometimes I feel like if what you have isn't life threatening just deal with it instead of inviting new problems. I did decide to try it though.
The Dr. prescribed 50mg to be taken at bedtime. Of course because I don't want kidney stones I took it with a ton of water. DUH I woke up twice to use the bathroom during the night. YEAH that's helping with my REM sleep! Go Serotonin! Last night I decided to take it with little water and try to make up for it during the day and thankfully I slept through the night for the first time in a very long time. Of course only being on it for 3 days I'm not noticing much yet. My stomach does feel a little queasy here and there. My mouth is very dry already, I hear this goes away after a few weeks though. I'm one of Jehovah's Witnesses so I was out in the Ministry work for about 3 hours yesterday and was walking, it was the same old same old. I spent most of the evening on the couch exhausted and sore. So obviously it hasn't helped yet. It usually takes a month or so for a medication like this to really make a difference. I wonder if it will. Only time will tell.
I'm doing my best to be humble and learn my limitations. I always thought of my self as a strong woman. I used to be able to move furniture alone and do heavy yard work. I saw myself as someone who was very capable. The last few years so much has changed. These days it's difficult for me to move a simple coffee table. I think if I just learn to live within these limitations I'll be happier.
Six hours later the nurse called me back and said very bluntly "The doctor just wants you to take the Topamax and see him in 4 weeks." By this time (after stewing for 6 hours) I'll try it. So I give her my pharmacy number and pick up the prescription. One of the side effects isn't bad. Weight loss. The others are. Blurry vision, kidney stones, dizziness, fatigue(like I don't have enough of that), confusion(or that), tingling in extremities etc... etc... . that's why I hate taking anything. It can help some things but then create a whole host of other problems. Sometimes I feel like if what you have isn't life threatening just deal with it instead of inviting new problems. I did decide to try it though.
The Dr. prescribed 50mg to be taken at bedtime. Of course because I don't want kidney stones I took it with a ton of water. DUH I woke up twice to use the bathroom during the night. YEAH that's helping with my REM sleep! Go Serotonin! Last night I decided to take it with little water and try to make up for it during the day and thankfully I slept through the night for the first time in a very long time. Of course only being on it for 3 days I'm not noticing much yet. My stomach does feel a little queasy here and there. My mouth is very dry already, I hear this goes away after a few weeks though. I'm one of Jehovah's Witnesses so I was out in the Ministry work for about 3 hours yesterday and was walking, it was the same old same old. I spent most of the evening on the couch exhausted and sore. So obviously it hasn't helped yet. It usually takes a month or so for a medication like this to really make a difference. I wonder if it will. Only time will tell.
I'm doing my best to be humble and learn my limitations. I always thought of my self as a strong woman. I used to be able to move furniture alone and do heavy yard work. I saw myself as someone who was very capable. The last few years so much has changed. These days it's difficult for me to move a simple coffee table. I think if I just learn to live within these limitations I'll be happier.
Tuesday, May 4, 2010
Denial
For years I've been in denial. I've known something was wrong but never wanted to admit it to myself. There has always been a stigma attached to the word FIBROMYALGIA. People who had it weren't really sick they were just hypochondriacs who were lazy. Someone who just wanted attention. Granted the wrong kind of attention but attention none the less. Whenever I was overly fatigued I blew it off as overworking. When my body ached beyond belief that's how it's suppose to be when you work out (even though I was only walking 2 blocks). Not remembering things is a part of aging. The pressure in my head is allergies or a sinus infection. My views have changed.
Let me start by saying I have not been officially diagnosed with Fibromyalgia! My Dr. highly suspects I have it. At this point we are still in the testing stage. They have looked at my thyroid. I've had a brain scan. We've done blood test. He has found nothing that is causing my fatigue and pain. He's done a few trigger points, though he didn't go through all of them, which I was confused at but will address at my next Dr. appointment. I have not yet seen a Rheumatologist.
How did this journey start? What made me finally admit to myself that it might be what I had dreaded for years? It started with headaches. That's all just headaches. I've had migraines but this was different. It was pressure it felt like I had a sinus infection all the time. I was constantly asking my family to feel my head. But I had no fever, so no infection. It would hurt just to touch my face. Last year my Dr sent me to an allergist. He said that the reason I was feeling so tired all the time and had so much pressure was probably due to allergies. Off to the allergist I went. She insisted I didn't have any allergies (no reaction to the scratch test) and then looked at me like I was crazy. I was crushed. I felt like a hypochondriac and that it was all in my head. When it would get bad I would take an allergy pill and it did seem to help alleviate some of the pressure but not all the time.
It took me a full year to gather the courage to go back to the Dr. I had too. I was coming home from work and I couldn't get up off the couch. When I did I could barely walk. I would be hunched over like I was 95 years old, I'm only 41! My muscle's would ache so bad. My husband just kept telling me. It's normal, your getting old. I'm sorry I don't feel like wanting to go to bed at 8:00 p.m. is normal, especially when all I have is a desk job. It isn't normal to walk for 20 minutes and then a half hour later be so stiff and sore that walking again is difficult. It isn't normal to go to a store and 10 minutes later feel so tired and weak you need to sit down and you want to go home. It isn't normal to not go somewhere because your body just aches. I think I've felt like this for so long I don't even recognize it as pain. I call it aching. In actuality it is pain. Pure and simple pain. I can look back and see I've felt this way on and off for years.
During that Dr. appointment he brought up the dreaded word. FIBROMYALGIA He said he would have to do some test to rule out other illnesses but that the symptoms I was describing fit it. I was so crushed. I almost hoped it was something else just because then I could take antibiotics or have a surgery and be done with it. I knew the pain and fatigue I was feeling was real, not in my head. I also knew that the community as a whole does not understand or even empathize with those who have this disease, syndrome I'm still not sure what it's classified as. I went home and scoured the Internet. It was time to do some real research on this. I started crying as I was reading about it. It was like reading my life story, fatigue, muscle pain and weakness, IBS, Fibro fog, memory problems, Flaring. All of it fit. It made so much sense to me now. There are times when I feel okay. Then something happens and BOOM it's like I'm an invalid.
So here I am. I'm at the very beginning of my journey. I'm not positive I have Fibro (found out that's the slang word for it) but I'm 90% sure I do. I've decided to write down my experience. If it helps even one person then I've accomplished more than I can hope.
Let me start by saying I have not been officially diagnosed with Fibromyalgia! My Dr. highly suspects I have it. At this point we are still in the testing stage. They have looked at my thyroid. I've had a brain scan. We've done blood test. He has found nothing that is causing my fatigue and pain. He's done a few trigger points, though he didn't go through all of them, which I was confused at but will address at my next Dr. appointment. I have not yet seen a Rheumatologist.
How did this journey start? What made me finally admit to myself that it might be what I had dreaded for years? It started with headaches. That's all just headaches. I've had migraines but this was different. It was pressure it felt like I had a sinus infection all the time. I was constantly asking my family to feel my head. But I had no fever, so no infection. It would hurt just to touch my face. Last year my Dr sent me to an allergist. He said that the reason I was feeling so tired all the time and had so much pressure was probably due to allergies. Off to the allergist I went. She insisted I didn't have any allergies (no reaction to the scratch test) and then looked at me like I was crazy. I was crushed. I felt like a hypochondriac and that it was all in my head. When it would get bad I would take an allergy pill and it did seem to help alleviate some of the pressure but not all the time.
It took me a full year to gather the courage to go back to the Dr. I had too. I was coming home from work and I couldn't get up off the couch. When I did I could barely walk. I would be hunched over like I was 95 years old, I'm only 41! My muscle's would ache so bad. My husband just kept telling me. It's normal, your getting old. I'm sorry I don't feel like wanting to go to bed at 8:00 p.m. is normal, especially when all I have is a desk job. It isn't normal to walk for 20 minutes and then a half hour later be so stiff and sore that walking again is difficult. It isn't normal to go to a store and 10 minutes later feel so tired and weak you need to sit down and you want to go home. It isn't normal to not go somewhere because your body just aches. I think I've felt like this for so long I don't even recognize it as pain. I call it aching. In actuality it is pain. Pure and simple pain. I can look back and see I've felt this way on and off for years.
During that Dr. appointment he brought up the dreaded word. FIBROMYALGIA He said he would have to do some test to rule out other illnesses but that the symptoms I was describing fit it. I was so crushed. I almost hoped it was something else just because then I could take antibiotics or have a surgery and be done with it. I knew the pain and fatigue I was feeling was real, not in my head. I also knew that the community as a whole does not understand or even empathize with those who have this disease, syndrome I'm still not sure what it's classified as. I went home and scoured the Internet. It was time to do some real research on this. I started crying as I was reading about it. It was like reading my life story, fatigue, muscle pain and weakness, IBS, Fibro fog, memory problems, Flaring. All of it fit. It made so much sense to me now. There are times when I feel okay. Then something happens and BOOM it's like I'm an invalid.
So here I am. I'm at the very beginning of my journey. I'm not positive I have Fibro (found out that's the slang word for it) but I'm 90% sure I do. I've decided to write down my experience. If it helps even one person then I've accomplished more than I can hope.
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