Hello there world! I had a follow up appointment with my rheumatologist today who treats my Lupus and Fibromyalgia. As you may recall in a previous blog, I have been having a very difficult time with the fibromyalgia for the past 7 months and have had to try several drugs such as a combination of Lyrica and Prozac, Soma, and now Cymbalta.
Good news: I am now on week 3 and the Cymbalta is now finally starting to help with my fibromyalgia pain and paresthesia. I am 30% better than I was before starting the Cymbalta. I still have depression and the Cymbalta hasn’t done a single thing to help that out. The doctor said to let it take a little more time to work its way into my system before we try an added medication to help with the depression.
Bad news: Lupus has been slowly making its way back in the forefront. My fingers are swollen to the point that they are shiny and red, my knuckles are bright red. I have traveling joint pain. My rashes from Tumid Lupus are out of control, covering my upper arms, cheeks and chest. And last but not least, my scalp is inflamed and forming new sores on a daily basis.
What does this mean? I am in a flare up, and its a bad one! I am on the generic version of Plaquenil called Hydroxochloroquine. This medication should be helping out my rashes and joint pain but it is not doing a single thing for my symptoms. It is time to start name brand Plaquenil to see if it helps me out any more than the generic version. He does not want to raise my Prednisone again, as we have been trying to lower it since September.
If the name brand of Plaquenil does not work then we will try Methotrexate weekly injections to try and control the skin and joint flare up. He does not want to jump into the Methotrexate, as I am already on another immunosuppressant called CellCept for my Lupus related kidney disease. The rheumatologist is testing my kidneys to see if they are going haywire again as well. I had 5 tubes of blood drawn today, which is not too bad seeing as though most of the time they draw anywhere from 5-10 vials.
My rheumatologist has informed me that I am not just sensitive to most forms of commercial lighting and sunlight anymore, it is making me extremely sick! Well, isn’t that lovely? He told me that I need to break down and buy a big hat to shade my face and wear long sleeves any time I am outside of my house on top of using the sunscreen. He said to buy sun protective clothing as well and to call my dermatologist for a visit. I looked online for some clothing, and Mr. Rheumatologist is out of his mind! These clothes are outrageously expensive!
I was so upset earlier today because of my news from my doctor that I called my husband to cry to him. I told him, “This whole Lupus business is way too expensive to keep up with.” He said that I was referring to the Lupus as if it’s the newest fad that I could choose to or not to follow. Okay, well, maybe the way I said it was a little bit ridiculous, as are many of the things that spit out of my mouth when I’m upset, but it is so true as well! Being sick is so expensive!
As far as my inflamed and sore covered scalp goes, I am a bit discouraged. Last December 2008 I began to develop the same symptoms of sores, inflammation, and itchiness which lead to hair loss by the end of the month. I had lost my hair for 3 months straight, and had a patch missing that was the size of my hand on my left side and on the back of my head. Oh goodness gracious, please don’t let me lose my hair again! I do have 2 wigs from the last time my hair fell out, but no matter how wonderful a wig looks, it is still not MY hair! And even if the wigs do look natural, they are itchy and make my head sweat. Big brimmed hat, you are my newest accessory!
Well, I guess it is time to get to researching sun protective clothing and preparing to sweat in long sleeves in the Sunshine State. I wonder if I am better off buying clothing or material to make my own clothing. Maybe there is a special type of detergent that will add the protection that I need. There has got to be a way to adjust more to my incredibly sensitive skin.
Showing posts with label flare up. Show all posts
Showing posts with label flare up. Show all posts
Thursday, December 3, 2009
Sunday, November 22, 2009
Fibromyalgia Flare-Up Rant
Fibromyalgia is one of those incredible diseases in which you never know what each day will bring. I almost wish that I got a memo to let me know what would be hurting me the following day so that I may plan my activities accordingly.
I have been suffering with Fibromyalgia since 2002, however, I have never had a flare up that has lasted for this long! It has been 7 agonizing months since my current Fibromyalgia flare up has begun, and there is no sign of it backing down. I have tried everything and anything that have been suggested with no success, and I am fed up.
Muscle relaxers do not help, narcotics do not help. I cannot take a bath, as the tub is too hard of a surface to sit on. The couch does not offer enough support and creates a restlessness in my hips that I cannot shake. The TENS unit feels good as long as I am using it, as does the heating pad, and no longer than that. We did manage to sweet talk Brent's father into giving us their memory foam mattress and that has been the only saving grace.
Muscles burn and tense up from my shoulder blades down to the back of my thighs. I can actually feel the muscles contracting, which is a very strange and uncomfortable feeling. Sitting or laying in one position for more than 5 minutes is impossible. I have got to keep shifting the weight of my body from one side to another. I catch myself clenching my jaw throughout the day from the muscle pain that just will not let up, and I grind my teeth in my sleep all night long. Brent tells me that the sound of me grinding my teeth is so loud that it wakes him up from a dead sleep. This is a man who wouldn't wake up if you told him that he had won the lottery, and the poor thing is waking up from my jackhammer jaws.
I have random stabbing pains in my hips. All I can think of to describe it as is a long needle being forced into my hip repeatedly as if it were a dart board. Soft massages help, but any sort of real pressure will send me flying out of my pants.
My clothes feel as if they are rough. Imagine wearing a shirt lined with short pine needles, and every time you move, the needles scrape against your skin. Now imagine wearing that pine needle lined shirt on top of a sunburn. Ouch! Yes, that is what my clothing feels like. I spend a lot of time during the day wearing nothing more than underwear (blinds closed of course!). My 3 1/2 year old daughter thinks its fun and takes her clothing off too. She wants to be like mommy. My poor angel, if she only knew!
Put any sort of pressure onto my skin, even the slightest touch, and I flinch. I feel as if I am one big gigantic bruise, and not one of those light bruises. I feel like a deep purple, black, and red fresh bruise. It is hard for people to understand how much pain they inflict by touching me at times, and I feel so horrible for backing away before physical contact.
I am so tired of trying medication after medication, and having to wait a few weeks to see if they will help me out. I am beginning to think that Fibromyalgia is a disease with no relief. The only thing I can do is pray that tomorrow will be the day that I wake up flare free.
I have been suffering with Fibromyalgia since 2002, however, I have never had a flare up that has lasted for this long! It has been 7 agonizing months since my current Fibromyalgia flare up has begun, and there is no sign of it backing down. I have tried everything and anything that have been suggested with no success, and I am fed up.
Muscle relaxers do not help, narcotics do not help. I cannot take a bath, as the tub is too hard of a surface to sit on. The couch does not offer enough support and creates a restlessness in my hips that I cannot shake. The TENS unit feels good as long as I am using it, as does the heating pad, and no longer than that. We did manage to sweet talk Brent's father into giving us their memory foam mattress and that has been the only saving grace.
Muscles burn and tense up from my shoulder blades down to the back of my thighs. I can actually feel the muscles contracting, which is a very strange and uncomfortable feeling. Sitting or laying in one position for more than 5 minutes is impossible. I have got to keep shifting the weight of my body from one side to another. I catch myself clenching my jaw throughout the day from the muscle pain that just will not let up, and I grind my teeth in my sleep all night long. Brent tells me that the sound of me grinding my teeth is so loud that it wakes him up from a dead sleep. This is a man who wouldn't wake up if you told him that he had won the lottery, and the poor thing is waking up from my jackhammer jaws.
I have random stabbing pains in my hips. All I can think of to describe it as is a long needle being forced into my hip repeatedly as if it were a dart board. Soft massages help, but any sort of real pressure will send me flying out of my pants.
My clothes feel as if they are rough. Imagine wearing a shirt lined with short pine needles, and every time you move, the needles scrape against your skin. Now imagine wearing that pine needle lined shirt on top of a sunburn. Ouch! Yes, that is what my clothing feels like. I spend a lot of time during the day wearing nothing more than underwear (blinds closed of course!). My 3 1/2 year old daughter thinks its fun and takes her clothing off too. She wants to be like mommy. My poor angel, if she only knew!
Put any sort of pressure onto my skin, even the slightest touch, and I flinch. I feel as if I am one big gigantic bruise, and not one of those light bruises. I feel like a deep purple, black, and red fresh bruise. It is hard for people to understand how much pain they inflict by touching me at times, and I feel so horrible for backing away before physical contact.
I am so tired of trying medication after medication, and having to wait a few weeks to see if they will help me out. I am beginning to think that Fibromyalgia is a disease with no relief. The only thing I can do is pray that tomorrow will be the day that I wake up flare free.
Tuesday, November 17, 2009
Here we go again!
Good evening! Or rather good morning... early morning. As you may have read in my earlier blogs, I have several health issues. I am in the middle of changing medications, trying new ones, weaning off of old ones, and it is taking a toll on my body right now.
I have been in a major flare up of Fibromyalgia flare up for about 6 months now. Before finding my current rheumatologist, I had gone to another one who believed that the only thing that would ever help me was steroid treatments of prednisone. I had no relief from the prednisone, but my doctor would not listen to me. I started to feel as if my symptoms were all in my head. How could I possibly feel so awful with being on steroids, muscle relaxers, and narcotics?
After months of agonizing pain that only the healthy can imagine when they are actively sick with the flu, I said enough is enough! I am extremely lucky to have a very good friend who is a nurse, who by the way just happens to work at my doctor's office. She sweet talked the top rheumatologist to take my case on and help me (this is a doctor who is not accepting new patients).
So, to make a long story short, I saw him and it was love at first visit! This doctor has taken his time to review my records all the way back to 1999 when all hell broke loose. He listens to my complaints and to be honest with you, I think he enjoys the challenge of trying to fix me!
No matter how wonderful my doctor is, I lay here in bed in a full fledged flare up of the dreadful Fibromyalgia. We have tried Lyrica with no success. I am onto Cymbalta as of 3 days ago. I should be able to tell within a couple of weeks if this will help me. I would love to be able to sit on my couch or in a chair for longer than 5 minutes before I want to curl up in a ball and curse the world for my muscles aching and my skin burning.
As if muscles and skin weren't enough of a problem, now I am experiencing more intense joint pain again and headaches are a daily occurrence. Oh Lupus why do you have to come back with a vengeance?
I sometimes wonder how much abuse my body can handle, but each time I begin to doubt myself, God reaches for my hand and guides me. My mother has always said that God doesn't give you more than you can handle. So, of course, you know what that means: I'm a force to be reckoned with.
Brent, just bear with me, and I am sorry for snoring, kicking you, grinding my teeth, and talking all night long in my sleep. And please try not to wake me up too much tonight to tell me to stop waking you up. If you just deal with it for tonight so I can finally get a little bit of a better night sleep, I will bake you a nice big batch of brownies! I love you honey!
I have been in a major flare up of Fibromyalgia flare up for about 6 months now. Before finding my current rheumatologist, I had gone to another one who believed that the only thing that would ever help me was steroid treatments of prednisone. I had no relief from the prednisone, but my doctor would not listen to me. I started to feel as if my symptoms were all in my head. How could I possibly feel so awful with being on steroids, muscle relaxers, and narcotics?
After months of agonizing pain that only the healthy can imagine when they are actively sick with the flu, I said enough is enough! I am extremely lucky to have a very good friend who is a nurse, who by the way just happens to work at my doctor's office. She sweet talked the top rheumatologist to take my case on and help me (this is a doctor who is not accepting new patients).
So, to make a long story short, I saw him and it was love at first visit! This doctor has taken his time to review my records all the way back to 1999 when all hell broke loose. He listens to my complaints and to be honest with you, I think he enjoys the challenge of trying to fix me!
No matter how wonderful my doctor is, I lay here in bed in a full fledged flare up of the dreadful Fibromyalgia. We have tried Lyrica with no success. I am onto Cymbalta as of 3 days ago. I should be able to tell within a couple of weeks if this will help me. I would love to be able to sit on my couch or in a chair for longer than 5 minutes before I want to curl up in a ball and curse the world for my muscles aching and my skin burning.
As if muscles and skin weren't enough of a problem, now I am experiencing more intense joint pain again and headaches are a daily occurrence. Oh Lupus why do you have to come back with a vengeance?
I sometimes wonder how much abuse my body can handle, but each time I begin to doubt myself, God reaches for my hand and guides me. My mother has always said that God doesn't give you more than you can handle. So, of course, you know what that means: I'm a force to be reckoned with.
Brent, just bear with me, and I am sorry for snoring, kicking you, grinding my teeth, and talking all night long in my sleep. And please try not to wake me up too much tonight to tell me to stop waking you up. If you just deal with it for tonight so I can finally get a little bit of a better night sleep, I will bake you a nice big batch of brownies! I love you honey!
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