Today marks 1 year since my
life turned upside down and ultimately resulted with the following diagnosis': RA, Hashimoto's
Thyroiditis, Fibromyalgia, Raynauds and Sjogrens and they aren't sure
they have them all yet. Still undergoing more tests! It amazes me the
way auto-immune diseases cluster in
individuals. If you think about it though there is really one one auto-immune disease and depending on your symptoms and where it is attacking depends on what you are diagnosed with. My body is in a full out war with itself and I am stuck in the middle of a war zone!
I woke up on this day last year and thought I had a bad flu
coming on, well it wasn't the flu and the feeling hasn't left. At least this
year I know for the most part what is wrong and I am undergoing
treatment for all of the above. It is interesting how they declare that
we need early and aggressive treatment and then it can take forever to
get diagnosed. When you are finally diagnosed and they start you on
medications then they sit back and let you know that it will be 3-6months
before we can say for certain if the meds are going to work...so much for
early and aggressive treatments! You would think after a year of
waiting, waiting for dx, waiting for tests, waiting for test results,
waiting for new dr. appointments, waiting for follow up appointments
that I would be the most patient person ever but just the opposite is
true. I just suck at hurry up and wait...not a strength of mine that is for sure.
When I think of anniversaries I think of celebrations. I have never been one to hold on to the dates I have lost important people in my life. I celebrate the life that was lived and tend to stay away from what was lost. I remember love and happy memories. Yet, this date the date the changed my life forever refused to be buried down deep today. It needed recognition and I am not sure why. It has crossed my minds so many times today I decided that maybe if I put it in writing it would go away and stop torturing me. Yes, it feels like torture. Jan 12, 2011 I was on top of the world. I was healthy, I exercised, ate healthy, I was maintaining a 32lb loss, I was in love and loved by my family, I had a great job and I was excited about what the future had in store. Amazing what a difference 24 hours can make. It was after a week of feeling like I was going to die, that I went to my Dr's. I just couldn't manage the pain that I was in. I couldn't get comfortable, the pain unbearable. Little did I know that I have been displaying intermittent symptoms for years and this time it was here to stay.
There has to be something to this. A large number of individuals I have come across in forums etc. mention either this date or the date that they were diagnosed. It seems to have a haunting quality to it :(
For those of you with Chronic Illness do you remember when your symptoms became unbearable or the day you were diagnosed? I guess for me it was so clear cut between healthy one day and falling apart the next that I remember it so clearly.
© 2011 Rhonda
Showing posts with label Chronic Fatigue. Show all posts
Showing posts with label Chronic Fatigue. Show all posts
Friday, January 13, 2012
Monday, January 2, 2012
Chronic Pain
On January 13th, 2012 I will have been living with Chronic illness resulting in chronic pain for exactly one year. Not one day in that entire year have I been pain free. It is a daunting statistic and if that isn't bad enough I know that there is a very high probability that the remainder of my life will be lived in pain. It is no wonder that Chronic Pain often coincides with chronic depression.
It was 8 months before we discovered the cause of my pain. I believed for all those months that if we just figured out the cause then we could treat it and it would go away. I look back at that time and think how naive I was and then I realize it was not nativity, it was how I got through some of the worst months of my life. Today I have a much better understanding of all of the things I have been diagnosed with and while I am not happy about it, I have accepted that this is the way life is. I cannot change it, I cannot wish it away so the best thing to do is to acknowledge the way it is and figure out a way to live my life so that I am not merely surviving but actually living. I decided when thinking about the new year that I was going to focus on the present in hopes that I could start living again even if it is with restrictions. None of these things do anything to help me deal with the crazy amount of pain that I live with. I cannot: think, wish, dream or bargain my way out of pain or the diagnosis'. The pain is very real and very bad.
Each day I live with a constant ache. Now please don't dismiss my ache try to think of it as more of a tooth ache and then you will have an idea. I have that ache in the joints of my feet, knees, hips, legs, back, shoulders, elbows, wrists, hands, neck and jaw. Then I have an ache in pretty much all of the muscles that surround those joints. So basically I ache from head to toe on both sides of my body because RA is special that way. That pain all on it's own, day in and day out is more than anyone should have to face. Then we can add the pain that comes in the form the feeling of somebody stabbing you with an ice pick in all of those joints...sounds more like a horror movie doesn't it.
Did you know that each foot and ankle contain 26 bones and 33 joints and more than 100 muscles. Now remember all those muscles ache and those joints often feel like they are on fire (in my feet especially), while being stabbed with an ice pick. I have often told my hubby I feel like my body is more like the old arcade pinball machines as the ice pick stabbing seems to jump from joint to joint, just as the pinball bounces around the machine from one area to another. When that is happening there is NOTHING that can be done to relieve the pain. Pain meds are a joke, they do not get rid of the pain they simply take the edge off , if you are lucky . If the pain is under an 8 and you take pain meds it takes the edge off enough so that you can actually function and think of something other than the pain. At the same time, I don't want to think what my pain would be like without my pain medication.
My Rheumatologist talks about pain scales. Pain scales mean nothing to me. Pain is subjective. I have had people complain to me about a certain pain and then apologize because they have no right to complain about such minor pain when I am in constant pain. and my standard response is no, you have every right to your pain. Your pain is what impacts your life and you have a right to your feelings and to express your pain and not have it compared to anyone else. We can all experience the same injuries but feel the pain differently. It also has to do with primary and secondary diagnosis. All of my diseases seem to have descended upon me at the same time. I think it is truly safe to say that my immune system is out of control attacking everything it shouldn't.
As for my Dr. she simply wants to know on a scale of 1-10 where my pain is. Not sure how that is helpful other than they want to hear that number going down when they meet with you. She has never asked me why I assign the number on that scale that I do. Behind the scenes is simply what am I able to do in relation to the pain. A ten on the pain scale is when I am unable to get out of bed, I cannot be distracted from the pain, I am in tears and begging for someone to make it go away, often questioning if I am going to make it or in the throws of it wishing I could die to make it stop. Yes, I have had pain that bad that I wished for my life to be over. Maybe it is the fact that we are dealing with the accumulated effects of the pain day in and day out. I have had more than my share of days where I have been in that much pain. In general I tend to stay around a 7-8 and you can often hear me say that life would be okay if we could get it down for a 5. A five I could consistently manage and then I wonder why anyone should have to live in pain at any number.
My family Dr. says that I should never let the pain get that bad. I take heavy duty pain meds 4x daily and even with those I live most days no less than a 7 and often 10+. This is to avoid the peaks and valley's with my pain. Trying to keep me on an even keal so that meds can do their job. I would hate to imagine where my pain is without my daily pain medications. I also use: heat, soaking in a hot tub (I have a walk in tub, thank goodness), ice packs, topical creams and rubs, music (believe it or not it is a known to decrease pain and depression!), meditation (I try but if the pain is over 8 it just doesn't work because I cannot focus on anything other than the pain) and anything I can think of. I used to use massage but that the last two times I went made things worse.
I recall seeing a pain scale that was helpful on RAWarrior.com but I was in so much pain when I saw it that I don't recall much about what it said other than I need to go back and find it. When I do I will share the link so that if you haven't already seen it, you can take a look and see if you find it helpful! It was actually a scale that RAWarrior linked to and here it is. I think I should consider printing this scale out and reviewing with my Dr. so that we are on the same pain scale page!
What do you do to manage your pain? Have you come across an effective pain scale? Please share your techniques for dealing with pain, preventing pain or if you have found an effective pain scale.
Looking forward to reading your comments!
© 2011 Rhonda
It was 8 months before we discovered the cause of my pain. I believed for all those months that if we just figured out the cause then we could treat it and it would go away. I look back at that time and think how naive I was and then I realize it was not nativity, it was how I got through some of the worst months of my life. Today I have a much better understanding of all of the things I have been diagnosed with and while I am not happy about it, I have accepted that this is the way life is. I cannot change it, I cannot wish it away so the best thing to do is to acknowledge the way it is and figure out a way to live my life so that I am not merely surviving but actually living. I decided when thinking about the new year that I was going to focus on the present in hopes that I could start living again even if it is with restrictions. None of these things do anything to help me deal with the crazy amount of pain that I live with. I cannot: think, wish, dream or bargain my way out of pain or the diagnosis'. The pain is very real and very bad.
Each day I live with a constant ache. Now please don't dismiss my ache try to think of it as more of a tooth ache and then you will have an idea. I have that ache in the joints of my feet, knees, hips, legs, back, shoulders, elbows, wrists, hands, neck and jaw. Then I have an ache in pretty much all of the muscles that surround those joints. So basically I ache from head to toe on both sides of my body because RA is special that way. That pain all on it's own, day in and day out is more than anyone should have to face. Then we can add the pain that comes in the form the feeling of somebody stabbing you with an ice pick in all of those joints...sounds more like a horror movie doesn't it.
Did you know that each foot and ankle contain 26 bones and 33 joints and more than 100 muscles. Now remember all those muscles ache and those joints often feel like they are on fire (in my feet especially), while being stabbed with an ice pick. I have often told my hubby I feel like my body is more like the old arcade pinball machines as the ice pick stabbing seems to jump from joint to joint, just as the pinball bounces around the machine from one area to another. When that is happening there is NOTHING that can be done to relieve the pain. Pain meds are a joke, they do not get rid of the pain they simply take the edge off , if you are lucky . If the pain is under an 8 and you take pain meds it takes the edge off enough so that you can actually function and think of something other than the pain. At the same time, I don't want to think what my pain would be like without my pain medication.
My Rheumatologist talks about pain scales. Pain scales mean nothing to me. Pain is subjective. I have had people complain to me about a certain pain and then apologize because they have no right to complain about such minor pain when I am in constant pain. and my standard response is no, you have every right to your pain. Your pain is what impacts your life and you have a right to your feelings and to express your pain and not have it compared to anyone else. We can all experience the same injuries but feel the pain differently. It also has to do with primary and secondary diagnosis. All of my diseases seem to have descended upon me at the same time. I think it is truly safe to say that my immune system is out of control attacking everything it shouldn't.
As for my Dr. she simply wants to know on a scale of 1-10 where my pain is. Not sure how that is helpful other than they want to hear that number going down when they meet with you. She has never asked me why I assign the number on that scale that I do. Behind the scenes is simply what am I able to do in relation to the pain. A ten on the pain scale is when I am unable to get out of bed, I cannot be distracted from the pain, I am in tears and begging for someone to make it go away, often questioning if I am going to make it or in the throws of it wishing I could die to make it stop. Yes, I have had pain that bad that I wished for my life to be over. Maybe it is the fact that we are dealing with the accumulated effects of the pain day in and day out. I have had more than my share of days where I have been in that much pain. In general I tend to stay around a 7-8 and you can often hear me say that life would be okay if we could get it down for a 5. A five I could consistently manage and then I wonder why anyone should have to live in pain at any number.
My family Dr. says that I should never let the pain get that bad. I take heavy duty pain meds 4x daily and even with those I live most days no less than a 7 and often 10+. This is to avoid the peaks and valley's with my pain. Trying to keep me on an even keal so that meds can do their job. I would hate to imagine where my pain is without my daily pain medications. I also use: heat, soaking in a hot tub (I have a walk in tub, thank goodness), ice packs, topical creams and rubs, music (believe it or not it is a known to decrease pain and depression!), meditation (I try but if the pain is over 8 it just doesn't work because I cannot focus on anything other than the pain) and anything I can think of. I used to use massage but that the last two times I went made things worse.
I recall seeing a pain scale that was helpful on RAWarrior.com but I was in so much pain when I saw it that I don't recall much about what it said other than I need to go back and find it. When I do I will share the link so that if you haven't already seen it, you can take a look and see if you find it helpful! It was actually a scale that RAWarrior linked to and here it is. I think I should consider printing this scale out and reviewing with my Dr. so that we are on the same pain scale page!
What do you do to manage your pain? Have you come across an effective pain scale? Please share your techniques for dealing with pain, preventing pain or if you have found an effective pain scale.
Looking forward to reading your comments!
© 2011 Rhonda
Wednesday, October 26, 2011
Dreams
On Wednesday October 5th one of my favourite blog authors Deb from the ABC's of RA wrote a blog called Hocus, Pocus, Refocus! I'll wait right here while you read this brilliant blog and then we can continue!
Welcome back...told you it was a very worthwhile read :-)
Deb really hit the nail on the head. October 2010 is when my health started to fall apart. Then I had the first two weeks of January where I thought finally things were turning around. Little did I know that I had two weeks to enjoy the last bit of "health" I will have for a long time. Since mid January I have been ill. Desperately looking for what was wrong. Reminding myself daily that the chronic pain, fatigue and a myriad of other strange occurrences were untreated. If I could just get a diagnosis things would go back to normal. I WOULD get my life back. It took 10 months and I had all three diagnosis. For those of you who are new to my blog they are: Hashimotos Thyroiditis, Fibromyalgia and Rheumatoid Arthritis. The hashimotos was promising a single pill a day and my thyroid would function normally...awesome...but I was wrong. My Dr. knew what I refused to believe that there was much more to this. 2 months later the Fibromyalgia was diagnosed. I have a family history of FMS so knew what I was in for. I was a little deflated but knew again with meds it could be managed for the most part. Then RA was diagnosed....that was 2.5 months ago.
Illness has taken over my life. First it was figuring out what was wrong, then treating what is wrong and the medications make me feel worse than I did to start. I am still not feeling any better. My life as I have known it for the past 40 years was over. But life was supposed to begin at 40...didn't my body get that memo?
Medication, Dr's appointments, tests and medication refills is what my life has become. Every single thing I choose to do in a day has a cost associated to it. Learning the economics of Chronic Illness has become my new reality. I am slowly learning to understand this new and uncooperative body of mine. I am learning to adjust daily activities to allow me to get the most done in a single day. Sadly most days I can commit to getting just a couple of small things done. Most days getting up and making my bed takes all the energy I have. Making kids lunches and getting them ready and out the door to school exhausts me. Once they are off, I log into work from my computer and make sure nobody is looking for me and then I curl up on the couch and rest while keeping half an eye on work. I now take showers only when my husband is home to help me in and out and of course to wash and condition my hair as I can no longer squeeze shampoo bottles. I keep saying I need to put my shampoo etc. into pumps...but I stay as far away from stores as possible. The walking (honestly less of walking more like shuffling), the looks from people who see a young woman with nothing visibly wrong (you would actually have to look closer than passersby bother to give) but clearly in immense pain, limping, shuffling along with her cane or leaning on a buggy for support. I would rather not go through that and don't for the most part. My husband does 99% of all of the shopping.
Speaking of shopping Christmas is just around the corner and it brings tears to my eyes. The overwhelming thought of trying to get all of my shopping done...sigh. I guess this year we will be trying out on-line shopping and hoping for the best. Oops sorry for the diversion but my daughter comes by her ADD (Attention Deficit Disorder) naturally!
Somewhere in the past year living stopped. Yes, technically I still breath and I am alive but I am watching life pass by with me as a bystander rather than an active participant. When my diagnosis took the wind out of my sails and my life became about learning how to live in a body that was no longer to be counted on I got lost along the way. My dreams were gone, I threw my hands in the air and focused on just getting through the day usually focused on getting through each individual hour minute by minute. I didn't consciously think of my dreams again until October 5th when Deb's blog reduced me to tears.
I have had a difficult few weeks since Deb's post. I have added being sick to my stomach daily which drains the life right out of me. At first I thought I caught a bug but since it does not get worse and the symptoms can be accounted for by active RA and medication side effects I am beginning to think I am wrong. Off to see the Dr. soon to get his opinion. I just have to find the energy to make that appointment. During this time I did however have time to think. Rather than feeling sorry for myself I focused on two things 1) Coming to terms with my diagnosis' which I will share with you in another blog. 2) What were my dreams? Are they still my dreams? What do I have to change to make those dreams possible even with my current limitations?
While I am still figuring out some things, there is one thing I do know. One must have dreams, ambitions and a purpose to life. We all need a reason to get up each and every day. My reason for living is my family: my husband, my children, my parents, my brother. One of my dreams was to work on completing a novel. There is a contest that begins November, the goal: to complete a novel in 30 days. I think it is time for me to find the links again and outline my novel and be ready to go in November. :)
A heart felt thanks to Deb for reminding me that although this is not the life I had planned on living it doesn't mean my life is not worth living! What are you dreams? What makes you get out of bed each and every day to face the world no matter how you are feeling?
© 2011 Rhonda
Welcome back...told you it was a very worthwhile read :-)
Deb really hit the nail on the head. October 2010 is when my health started to fall apart. Then I had the first two weeks of January where I thought finally things were turning around. Little did I know that I had two weeks to enjoy the last bit of "health" I will have for a long time. Since mid January I have been ill. Desperately looking for what was wrong. Reminding myself daily that the chronic pain, fatigue and a myriad of other strange occurrences were untreated. If I could just get a diagnosis things would go back to normal. I WOULD get my life back. It took 10 months and I had all three diagnosis. For those of you who are new to my blog they are: Hashimotos Thyroiditis, Fibromyalgia and Rheumatoid Arthritis. The hashimotos was promising a single pill a day and my thyroid would function normally...awesome...but I was wrong. My Dr. knew what I refused to believe that there was much more to this. 2 months later the Fibromyalgia was diagnosed. I have a family history of FMS so knew what I was in for. I was a little deflated but knew again with meds it could be managed for the most part. Then RA was diagnosed....that was 2.5 months ago.
Illness has taken over my life. First it was figuring out what was wrong, then treating what is wrong and the medications make me feel worse than I did to start. I am still not feeling any better. My life as I have known it for the past 40 years was over. But life was supposed to begin at 40...didn't my body get that memo?
Medication, Dr's appointments, tests and medication refills is what my life has become. Every single thing I choose to do in a day has a cost associated to it. Learning the economics of Chronic Illness has become my new reality. I am slowly learning to understand this new and uncooperative body of mine. I am learning to adjust daily activities to allow me to get the most done in a single day. Sadly most days I can commit to getting just a couple of small things done. Most days getting up and making my bed takes all the energy I have. Making kids lunches and getting them ready and out the door to school exhausts me. Once they are off, I log into work from my computer and make sure nobody is looking for me and then I curl up on the couch and rest while keeping half an eye on work. I now take showers only when my husband is home to help me in and out and of course to wash and condition my hair as I can no longer squeeze shampoo bottles. I keep saying I need to put my shampoo etc. into pumps...but I stay as far away from stores as possible. The walking (honestly less of walking more like shuffling), the looks from people who see a young woman with nothing visibly wrong (you would actually have to look closer than passersby bother to give) but clearly in immense pain, limping, shuffling along with her cane or leaning on a buggy for support. I would rather not go through that and don't for the most part. My husband does 99% of all of the shopping.
Speaking of shopping Christmas is just around the corner and it brings tears to my eyes. The overwhelming thought of trying to get all of my shopping done...sigh. I guess this year we will be trying out on-line shopping and hoping for the best. Oops sorry for the diversion but my daughter comes by her ADD (Attention Deficit Disorder) naturally!
Somewhere in the past year living stopped. Yes, technically I still breath and I am alive but I am watching life pass by with me as a bystander rather than an active participant. When my diagnosis took the wind out of my sails and my life became about learning how to live in a body that was no longer to be counted on I got lost along the way. My dreams were gone, I threw my hands in the air and focused on just getting through the day usually focused on getting through each individual hour minute by minute. I didn't consciously think of my dreams again until October 5th when Deb's blog reduced me to tears.
I have had a difficult few weeks since Deb's post. I have added being sick to my stomach daily which drains the life right out of me. At first I thought I caught a bug but since it does not get worse and the symptoms can be accounted for by active RA and medication side effects I am beginning to think I am wrong. Off to see the Dr. soon to get his opinion. I just have to find the energy to make that appointment. During this time I did however have time to think. Rather than feeling sorry for myself I focused on two things 1) Coming to terms with my diagnosis' which I will share with you in another blog. 2) What were my dreams? Are they still my dreams? What do I have to change to make those dreams possible even with my current limitations?
While I am still figuring out some things, there is one thing I do know. One must have dreams, ambitions and a purpose to life. We all need a reason to get up each and every day. My reason for living is my family: my husband, my children, my parents, my brother. One of my dreams was to work on completing a novel. There is a contest that begins November, the goal: to complete a novel in 30 days. I think it is time for me to find the links again and outline my novel and be ready to go in November. :)
A heart felt thanks to Deb for reminding me that although this is not the life I had planned on living it doesn't mean my life is not worth living! What are you dreams? What makes you get out of bed each and every day to face the world no matter how you are feeling?
© 2011 Rhonda
Wednesday, September 14, 2011
Rheumatoid Arthritis What Is It?
Before I begin today's blog I would just like to remind people. I am a patient who suffers with the diseases that I am trying to share an understanding of. The information that I am sharing is made from notes of my initial research in trying to understand my diagnosis'. I kept mostly to highly trusted sites such as the Mayo Clinic, Web MD, Cleveland Clinic, RAWarrior etc. What I am sharing is my interpretation of my research. Facts as I understand them to be.
As I have blogged in the past Rheumatoid Arthritis is a misunderstood Auto-Immune Disease in large part due to it's name. Most people hear arthritis and assume that it is the same as the touch of arthritis they have in their (insert body part) that comes with a lifetime of use or overuse. This couldn't be farther from the truth. People look at me with wide eyes when I ask if their "arthritis" is treated with Chemotherapy and Antimalarial drugs? Does your arthritis have a high mortality rate? This shocking approach usually grabs their attention enough that they are now interested in hearing what I have to say and an opportunity for RA Awareness and Education is before me. I appreciate any opportunity to help others to try to understand. Support Groups, Forums, Blogs etc. are full of people wishing for more understanding and less judging. While only people who experience RA for themselves will truly understand what it is like to live with it on a daily basis it is important that others try to understand as much as they are capable of. This is so important when it comes to family, friends and caregivers. People who have RA want and need to be heard, understood and most of all to not be judged.
Rheumatoid Arthritis
© 2011 Rhonda
As I have blogged in the past Rheumatoid Arthritis is a misunderstood Auto-Immune Disease in large part due to it's name. Most people hear arthritis and assume that it is the same as the touch of arthritis they have in their (insert body part) that comes with a lifetime of use or overuse. This couldn't be farther from the truth. People look at me with wide eyes when I ask if their "arthritis" is treated with Chemotherapy and Antimalarial drugs? Does your arthritis have a high mortality rate? This shocking approach usually grabs their attention enough that they are now interested in hearing what I have to say and an opportunity for RA Awareness and Education is before me. I appreciate any opportunity to help others to try to understand. Support Groups, Forums, Blogs etc. are full of people wishing for more understanding and less judging. While only people who experience RA for themselves will truly understand what it is like to live with it on a daily basis it is important that others try to understand as much as they are capable of. This is so important when it comes to family, friends and caregivers. People who have RA want and need to be heard, understood and most of all to not be judged.
Rheumatoid Arthritis
- Is an Auto-Immune Disease that causes chronic inflammation of the joints and in severe cases organs. Essentially in Auto-Immune Diseases your immune system attacks healthy cells. It is a systemic disease and affects the entire body.
- Chronic pain. The pain is constant and has been described as an ache, sharp stabbing pains, radiating pain and burning pain. I am sure there are even more ways to describe this pain than I have covered. All in all the pain is difficult to describe and more difficult manage. Needless to say this type of pain can be debilitating. I have gone 11 months and not had one pain free day and have been told in most cases I can expect that I will never see a pain free day again. I cannot tell you what living with chronic pain is like. It is something that you can never understand unless you are unlucky enough to live with it. Pain is sometimes treated by your Rheumatologist but more often is treated by your family doctor (primary care physician) or through a pain clinic. In my case we have tried many different forms of pain relief and the only medication to this point that helps to take the edge off the pain is oxycodone which is a narcotic. I have come to realize that regardless of how you manage your pain, the best you can hope for is to take the edge off so that you can put it on the back burner so that you can function. In months before I found oxycodone the pain was so intense that I could do nothing and think of nothing other than that all consuming pain. I hope this is something that you never have to experience.
- Inflammation is a hallmark symptom of RA. It causes swollen, painful, hot, red joints. Not everybody experiences the same kind of swelling or to the same degree. This can confuse things and make it more difficult to diagnose. It is possible to have RA and have very limited swelling. In my case I experience more puffiness than actual swelling.
- Stiffness. Those with RA have stiffness of the joints. In the mornings or after long periods of inactivity (usually 30-60 minutes will do it for me) our joints become stiff. In the mornings it can take upwards of an hour or more to work the kinks out and for our joints to loosen up.
- Chronic Fatigue is also an issue with RA. Always being extremely tired and waking just as tired as we were when we went to bed is common. Sleep issues are also common which do not help with the levels of fatigue. Waking in the night in pain, not being able to get back to sleep or get comfortable are also issues. Medications such as methotrexate which is a common DMARD (Disease Modifying Antirheumatic Drugs) and usually the first medication prescribed to treat RA which is a low dose chemotherapy drug causes/increases fatigue as well. The constant fatigue limits what we are able to accomplish in a given time period and resting/naping is often required. It should also be noted that while the average person requires 8 hours of sleep. the average RA person requires 10 hours. Medications are often prescribed to assist with getting restorative sleep. Sleep studies are often performed to ensure there are not sleep issues such as Apnea that are causing lack of restorative sleep.
- Depression, Anxiety, Stress and Emotions that are all over the map are common in people with RA. Being diagnosed with a chronic disease that is debilitating, causes deformity and joint damage, changes what you can do, how you do it, the constant fatigue and chronic pain are known to take it's toll. It is also not uncommon for periods of hopelessness, thoughts of suicide, anger and guilt to surface. If you or someone you know is suicidal PLEASE REACH OUT and GET HELP. Remember to keep talking. Expressing yourself in a journal, blog, on-line community really can make a difference. I highly recommend seeing a Social Worker (Arthritis Society has some very knowledgeable and helpful social workers on staff), Psychiatrist, Psychologist or Counsellor to help you work through your feelings around chronic illness. Note: The difference between a psychiatrist and psychologist is the ability to prescribe medication. There is no shame in reaching out for help to learn how to manage your illness and your feelings.
- As with most auto-immune diseases women are three times more likely than men to develop RA. Approximately 1% of the worlds population has a diagnosis of RA. Of that 1%, approximately 25% will have a severe form of the disease. Most often the disease is diagnosed between the ages of 30 and 60. However children can develop the disease and be diagnosed with JRA. Sadly you are never too young to develop Rheumatoid Arthritis.
- Rheumatoid Nodules are often found in people who have a severe form of the disease. My nodules (I believe I now have a grand total of 36 between my hands and feet) presented before treatment and helped to diagnose my RA. Although some medications (Methotrexate is one) that are used to treat RA can cause nodules. In this case my understanding is that the nodules do not represent the severity of disease activity but are a side effect. When nodules form as a result of medication the medication is usually discontinued. Nodules are lumps that form near damaged joints and can vary in size being the size of a pea to the size of a walnut. They can be hard or squishy, some move others don't. Nodules can be removed surgically but often grow back within just a few months. In most cases they are not painful but are often tender. They can have tendon involvement. Be sure to mention development or changes in nodules to your Rheumatologist.
- Symmetry is important for a diagnosis of RA. What happens on one side of your body is mirrored on the other. This means if the fingers on your right hand are impacted so are the fingers on the left hand. Sometimes it takes a day or two to catch up but it is extremely rare for it to involve only one side of the body. In my case even my nodules are symmetric. Sometimes it takes 24 hours but I will develop mirrored nodules on the opposite side in the exact location of the first. This is the one piece of the disease that amazes and saddens me at the same time.
- For the best prognosis when RA is diagnosed early and aggressive treatment is required. The goal of these treatments which are harsh in their own right is to slow the disease progression down so that it does not reach your organs.
- Mortality - It is commonly accepted that the lifespan of an individual with RA is shortened by 10 - 15 years depending on what you read. Organ involvement (lungs and heart are most common) are one of the causes of the high mortality rates in patients with RA. Other causes for the high mortality rates are the systemic inflammation which accelerates mortality and of course there is less preventative care. It is not unheard of for Cardiologists to not even be aware that RA can cause Pericarditis which is an inflammation of the pericardium. Respiratory causes, are a significant contributor to excess mortality in patients with RA ranking as the second major cause of death in the RA population. A number of pulmonary manifestations are associated with RA. The most common is interstitial lung disease (ILD) which leads to pulmonary fibrosis (PF) during which the lung parenchyma is involved. In my books these are all really good reasons to take the medications to try and cut down on these risks and if we can't stop the disease then we can at least slow it down so that we do not suffer from organ involvement any sooner than necessary!
- RA is diagnosed by medical history, exam, review of symptoms, blood tests, X-Rays, Ultrasounds, MRI's and any combination there of. It should be noted that there are large numbers of people such as myself who are seronegative. This means that our blood tests do not show the typical signs of RA. In my case my Rheumatoid Factor (RF) is normal, my ANA, Sedrates etc. are normal. The only marker I have in my bloodwork is the Anti-CCP which was more than double the acceptable limit. This is the one test that accurately is used for determining RA to my understanding. Interestingly enough you can have a positive RF and still NOT have RA...Confusing or what! My Rheumatologist explained to me that my Anti-CCP was a predictor that I would develop RA (usually within 10 years) but it was my symptoms and nodules that clearly indicated that my RA was active.
- Everyone with RA is hopeful that one of their medications will allow them to go into remission (a state where the disease is inactive). Remission is elusive and only reached by approx. 1% of all people diagnosed with RA.
- In the beginning stages RA is an invisible illness. Even as the disease ravages our bodies the damage is often only noticeable when pointed out. Eventually the chronic pain, inflammation, nodules and damage to joints becomes apparent. While we are at the invisible stage we are often met with people who do not understand the severity of pain, fatigue and limitations that we face daily.
- Reduced range of motion, increased pain, joint damage, muscle weakness etc. become more noticeable as we rely on canes, wheelchairs, wear splints, our gait changes (often walk with limp) and we look for other creative ways of dealing with the results of our illness. There are many visible signs of RA that I will cover in another blog.
- Surgery is often in the future of an RA patient. Joint Replacement (Hips, Knees, Shoulders are common), Joint Fusion which straightens joints that have been damaged (fingers, toes) and general arthroscopic surgeries to clean out the debris from the damage that is occuring.
- Loss of Mobility is the hardest part to get used to for a number of RA patients. The damage and inflammation take their toll and patients often rely on canes, scooters and wheelchairs to get around. Mobility is affected by the many foot, knee and hip problems.
© 2011 Rhonda
Tuesday, September 13, 2011
Fibromyalgia What Is It?
Before I begin today's blog I would just like to remind people. I am a patient who suffers with the diseases that I am trying to share an understanding of. The information that I am sharing is made from notes of my initial research in trying to understand my diagnosis'. I kept mostly to highly trusted sites such as the Mayo Clinic, Web MD, Cleveland Clinic, RAWarrior etc. What I am sharing is my interpretation of my research. Facts as I understand them to be.
Fibromyalgia
Fibromyalgia is a widely misunderstood disease. A large number of people argue that it is a catch all diagnosis. The medical community has come a long way in the past ten years in understanding Fibromyalgia. All blood tests and x-rays come back normal. Diagnosis is made my ruling out other diseases and reviewing symptoms that have been present for more than 6 months. There are also 18 tender points (seen in the picture below) that Dr's assess, a diagnosis is made if 11 or more of the tender points are positive. The cause is unknown but it is widely accepted by the medical community that there is a problem with the area of the brain that processes pain. It is also common for those who have Fibromyalgia suffer from nerve pain.
Fibromyalgia is a chronic syndrome in which a person experiences body-wide pain, tenderness and stiffness in the joints, muscles, tendons and soft tissues. It causes sleep problems and can be associated with depression and anxiety. While it is not an Auto-Immune disease it is commonly found in individuals who are diagnosed with Auto-Immune diseases. The pain from Fibromyalgia comes in many forms it can be: a dull ache, a burning sensation or shooting pain. In my case it is a combination of all three.
Fibromyalgia also causes what is coined "Fibro Fog" which is a way of describing the constant brain fog that individuals face. It impacts memory, concentration and recall. The other hallmark symptom of Fibromyalgia is chronic fatigue. You wake just as tired in the morning as you were when you went to bed the night before. Other sleep disturbances are often found along with depression.
Other symptoms of fibromyalgia may include:
Fibromyalgia
Fibromyalgia is a widely misunderstood disease. A large number of people argue that it is a catch all diagnosis. The medical community has come a long way in the past ten years in understanding Fibromyalgia. All blood tests and x-rays come back normal. Diagnosis is made my ruling out other diseases and reviewing symptoms that have been present for more than 6 months. There are also 18 tender points (seen in the picture below) that Dr's assess, a diagnosis is made if 11 or more of the tender points are positive. The cause is unknown but it is widely accepted by the medical community that there is a problem with the area of the brain that processes pain. It is also common for those who have Fibromyalgia suffer from nerve pain.
Fibromyalgia is a chronic syndrome in which a person experiences body-wide pain, tenderness and stiffness in the joints, muscles, tendons and soft tissues. It causes sleep problems and can be associated with depression and anxiety. While it is not an Auto-Immune disease it is commonly found in individuals who are diagnosed with Auto-Immune diseases. The pain from Fibromyalgia comes in many forms it can be: a dull ache, a burning sensation or shooting pain. In my case it is a combination of all three.
Fibromyalgia also causes what is coined "Fibro Fog" which is a way of describing the constant brain fog that individuals face. It impacts memory, concentration and recall. The other hallmark symptom of Fibromyalgia is chronic fatigue. You wake just as tired in the morning as you were when you went to bed the night before. Other sleep disturbances are often found along with depression.
Other symptoms of fibromyalgia may include:
- Irritable bowel syndrome (IBS)
- Memory and concentration problems
- Numbness and tingling in hands and feet
- Palpitations
- Reduced ability to exercise
- Tension or migraine headaches
Treatment consists of : medications (muscle relaxants, pain medication, anti-depressants, sleep medications etc) , exercise, stress reduction strategies, Cognitive Behavioural Interventions
Interestingly enough I have found a large number of individuals who have been diagnosed with Rheumatoid Arthritis have also been diagnosed with Fibromyalgia. In my case the two diagnosis came 3 weeks apart.
Have you been diagnosed with Fibromyalgia? Is that diagnosis in combination with an Auto-Immune Disease? Have you found anything that helps relieve your symptoms?
© 2011
Monday, August 22, 2011
A Reprieve
I have been dreading today since Saturday. As if anyone needed another reason to dislike Monday's its being time to take your next Methotrexate (chemo drug) dose that will do it. It leaves me so dizzy, nauseated and tired for days which is saying something because I have suffered with chronic fatigue since January and this mediction makes it that much worse for 2-3 days after I take my dose. YUCK!! I woke yesterday with a sore throat and this morning with a wicked cough. Saw my family Dr. this afternoon who said that I had a very bad chest infection so ....no Methotrexate today! Antibiotics to clear this up before I end up in hospital with pneumonia. I am to take antibiotics for at least 3 days before I take the Methtrexate...so now I dislike Wednesdays...ugh. Unless of course the antibiotics don't do the trick and I am still sick come Wednesday! Time will tell.
© 2011 Rhonda
© 2011 Rhonda
Tuesday, August 2, 2011
Attitude
Living with chronic pain and fatigue is a challenge. I thought I understood what it is like for others who experience this kind of pain and fatigue. If I were honest, I quickly came to realize that I didn't have a clue what it was like to live that way day in and day out. It is one of those things that to truly understand you have to experience. I wouldn't wish that on anyone. The most frustrating part for me is that I am a mom to young children. My oldest is 19 but the two little ones are only 8 and 9. They still need me and better yet they are still at an age where they want me! It breaks my heart to not be able to make plans from one day to the next because we don't know how I will be feeling. We don't know how bad the humidity is going to be and blatantly we don't know if I will be physically capable of much more than getting out of bed! My fun factor has taken a serious hit. My husband and kids disagree but even I know the difference.
We play board games in my bed, watch movies, talk and get lost in wonderful books. We still do things like visit the Toronto Zoo. I have slowly been learning to do things differently than I used to. When we go to the zoo, we go for a couple of hours in the morning before the heat gets too bad. We use the zoomobile to get from continent to continent and when needed I can rent a wheelchair. Thank goodness we have a family membership and can go as many times as we would like. This has allowed us to see all of the zoo this year broken up into manageable chunks. I can't imagine being without a zoo membership. We also have an Ontario Science Center membership and the same rules apply except it allows us to go anytime of the day because of the air conditioning. Loving indoor activities in the heat of summer and the cold of winter.
Santa knocked it out of the park last year when he gave the kids the memberships for Christmas. Gifts that are remembered, used year round and do not clutter the house. Those family memberships have done wonders for us this year. I am looking to see what other memberships are available for things that are near by (as I don't travel distances well) and will encourage family activity year round. Mind you these two memberships will be hard to beat!
I have spent many an hour in the past 8 months feeling sorry for myself. My life turned upside down, the pain, the fatigue and not knowing if my legs will work from one day to the next. Having to use a cane to make sure that I stay on my own two feet rather than on my backside. Balance issues can be bad and certainly embarrassing when they occur in public. It is amazing the looks I get when I; use accessible parking (I have a permit), when I walk with a cane or on bad days when I use a wheelchair. I guess it is hard for people to understand when there isn't anything visible to help them understand. I have also become very aware of how inaccessible our city truly is. Again something you only see when you are faced with the challenge of having to get around. Our cities need to consider using individuals who use canes and wheelchairs to get around to be the ones to provide them with information on what is and isn't accessible.
I think the biggest lesson I have learned this year is that I have control over only one thing in my life. Yes, just one thing. My attitude. It is my attitude that makes a difference in my day to day life. I choose my attitude no different than I choose the clothing I am going to wear each day. My attitude affects how I feel, what I do and how I do it. It impacts each and every aspect of my life and the lives of those around me. I choose to see the glass as half full. I choose a positive attitude. I choose to surround myself with positive people that have positive attitudes. There isn't anything that I cannot accomplish if I approach it with a positive attitude.
I truly believe that attitude is half the battle. Once you are armed with a positive attitude you can do anything. Your attitude affects your ability to do everything. There are some quotes that I use to remind me about the value of a positive attitude and it's impact on my life.
"Do or Do Not there is no Try" - Yoda
"Destiny is not a matter of chance, It is a matter of choice, It is not something to be waited for, But rather something to be achieved" - William Jennings Bryan
"Be the change you want to see in the world" - Mahatma Ghandhi
"Dream as if you'll live forever. Live as if you'll die today" - James Dean
"When the student is ready the teacher will appear" - Buddhist Proverb
"You become what you think about" - Earl Nightingale
"To "try" is failure with honour" - Unknown
What does your attitude say about you? What are your favourite quotes that inspire and motivate you?
© 2011 Rhonda
We play board games in my bed, watch movies, talk and get lost in wonderful books. We still do things like visit the Toronto Zoo. I have slowly been learning to do things differently than I used to. When we go to the zoo, we go for a couple of hours in the morning before the heat gets too bad. We use the zoomobile to get from continent to continent and when needed I can rent a wheelchair. Thank goodness we have a family membership and can go as many times as we would like. This has allowed us to see all of the zoo this year broken up into manageable chunks. I can't imagine being without a zoo membership. We also have an Ontario Science Center membership and the same rules apply except it allows us to go anytime of the day because of the air conditioning. Loving indoor activities in the heat of summer and the cold of winter.
Santa knocked it out of the park last year when he gave the kids the memberships for Christmas. Gifts that are remembered, used year round and do not clutter the house. Those family memberships have done wonders for us this year. I am looking to see what other memberships are available for things that are near by (as I don't travel distances well) and will encourage family activity year round. Mind you these two memberships will be hard to beat!
I have spent many an hour in the past 8 months feeling sorry for myself. My life turned upside down, the pain, the fatigue and not knowing if my legs will work from one day to the next. Having to use a cane to make sure that I stay on my own two feet rather than on my backside. Balance issues can be bad and certainly embarrassing when they occur in public. It is amazing the looks I get when I; use accessible parking (I have a permit), when I walk with a cane or on bad days when I use a wheelchair. I guess it is hard for people to understand when there isn't anything visible to help them understand. I have also become very aware of how inaccessible our city truly is. Again something you only see when you are faced with the challenge of having to get around. Our cities need to consider using individuals who use canes and wheelchairs to get around to be the ones to provide them with information on what is and isn't accessible.
I think the biggest lesson I have learned this year is that I have control over only one thing in my life. Yes, just one thing. My attitude. It is my attitude that makes a difference in my day to day life. I choose my attitude no different than I choose the clothing I am going to wear each day. My attitude affects how I feel, what I do and how I do it. It impacts each and every aspect of my life and the lives of those around me. I choose to see the glass as half full. I choose a positive attitude. I choose to surround myself with positive people that have positive attitudes. There isn't anything that I cannot accomplish if I approach it with a positive attitude.
I truly believe that attitude is half the battle. Once you are armed with a positive attitude you can do anything. Your attitude affects your ability to do everything. There are some quotes that I use to remind me about the value of a positive attitude and it's impact on my life.
"Do or Do Not there is no Try" - Yoda
"Destiny is not a matter of chance, It is a matter of choice, It is not something to be waited for, But rather something to be achieved" - William Jennings Bryan
"Be the change you want to see in the world" - Mahatma Ghandhi
"Dream as if you'll live forever. Live as if you'll die today" - James Dean
"When the student is ready the teacher will appear" - Buddhist Proverb
"You become what you think about" - Earl Nightingale
"To "try" is failure with honour" - Unknown
What does your attitude say about you? What are your favourite quotes that inspire and motivate you?
© 2011 Rhonda
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