I was hurting before this week, but now it's even worse. It's not in my muscles. It's in my knuckles, neck and lower back. According to my blood work, though, I'm not having inflammation problems. At least, not 1.5 months ago I wasn't.
I took the kids to the pool twice this week. Great exercise. I know my rheumatologist will be happy to hear I haven't just been sitting. We have also walked around. Not speedy, mind you, but we have. I actually feel a difference in my body, which is good.
However, Wednesday when we went to the pool, my 4 yr old wanted to jump off the side. I was standing to catch him. I had to turn my head because my oldest jumped in and splashed me. Well, as my head was turned, my 4 yr old jumped and messed up my neck.
I know it will never happen, but I'm so afraid that my little family here will NOT want to be around me anymore, because I hurt. I try to do things, even if I really can't, because I still _want_ to be part of everything. I cry a little now and again and hope they don't see. Sometimes I am crying and no one can tell because tears won't form or fall. Guess that's another progression of the disease. Along with the fact I have to use nasal spray because ... well...
*sigh*
Friday, July 29, 2011
Wednesday, July 13, 2011
How I explain RA to my kids
Explaining RA or any autoimmune disease to children (or adults) is not easy. It takes a while and repeating myself and even then, there is no guarantee the people will understand. So, I drew out some stuff the other day. It took a while because using my hands is not something I can do for a period of time. I love to write and draw. I prefer the old pencil/paper method to computer because I type faster than my thoughts so most of the time I sit staring at the screen waiting for the next thought to pop into my head. Hopefully the images I am going to upload to my computer will post here decently.
This is the first picture.
The second - introducing the immune system.
This is a very basic look at what happens when a virus or bacteria enter the body. The WBC fight until the foreign antibody is dead.
This pain she is feeling (or he, just happens that autoimmune occur in more women then men), is constant unless she takes a pain killer. The stiffness every morning from 30-45 min (give or take) and the pain pays no regard to if it is cold or hot outside. When the barometric pressure increases, however, so does her pain.
This is just an minute example of what happens in her body. The WBC are attacking the tissues (in this case) between the bones in her fingers. Now, picture that happening all over her body, in all joints. Her body is begging the WBC and immune system to stop trying to attack it. Telling the system it's NOT the enemy. But it's not listening.
There is no cure for RA or any autoimmune disorder. Medication can slow down the process and make life comfortable and livable. One person can have more than one autoimmune disorder, too, and they are not only attacking the joints, but they will attack the heart, liver and other organs in the body. To these people who suffer, their immune system sees it's creator, owner, host as an enemy. And we all know, that the immune system will fight until the enemy is dead.
That last sentence, when I wrote it last night, made reality sink in for the first time in a year.
There is no cure for RA or any autoimmune disorder. Medication can slow down the process and make life comfortable and livable. One person can have more than one autoimmune disorder, too, and they are not only attacking the joints, but they will attack the heart, liver and other organs in the body. To these people who suffer, their immune system sees it's creator, owner, host as an enemy. And we all know, that the immune system will fight until the enemy is dead.
That last sentence, when I wrote it last night, made reality sink in for the first time in a year.
Monday, July 11, 2011
Life since increase of Cymbalta
Well, as much as I don't want to admit it, I think a lot of the pain I was feeling was from my fibromyalgia. It really sucks. I'm now on 60 mg of Cymbalta a day. I love the way it helps me with my depression, I just wish I didn't have the fibro along with it.
I do still have a lot of the hand, shoulder pain from the RA. I doubt that will ever change. At least I'm sort of managed now.
One thing that Cymbalta does that isn't good, is increase my BP. When I wasn't on Cymbalta or Savella, my BP went down considerably - back to normal limits. Now, I have to fight it again. Maybe now that I'm not in CONSTANT pain, I can start walking in the mornings, because I really need to get my body going.
Guess that's about all for this little update.
I do still have a lot of the hand, shoulder pain from the RA. I doubt that will ever change. At least I'm sort of managed now.
One thing that Cymbalta does that isn't good, is increase my BP. When I wasn't on Cymbalta or Savella, my BP went down considerably - back to normal limits. Now, I have to fight it again. Maybe now that I'm not in CONSTANT pain, I can start walking in the mornings, because I really need to get my body going.
Guess that's about all for this little update.
Friday, June 24, 2011
Latest Appointment
After accidentally missing my last appointment, someone canceled and I was able to get in on 6/22.
*takes a deep breath* I liked it when I first went into the office and she spent time with me. Now, it seems like she barely has time to check me out before she leaves the office. She asked where my pain is, I told her neck, shoulder hands and now my elbows (they never hurt before). She asked if the shot I received last time helped, I told her no, but I walked anyway. I did a week of exercise and it was ... so painful. I forced it and was down so much, it wasn't funny. Because my inflamation went down to normal, she said it was probably my fibro. Oh, and my blood pressure was 165/118. I've never been that high before. She said no shot because it didn't help and my BP was too high.
She had the nurse draw blood and give me a TB test (so we can be prepared for biologics if it comes to that). I go back today to get it read.
If the pain persists, then she will send me t a pain management secialist. Until my next visit in 2 months, I'm now on 60mg of cymbalta (up from 30), 2mg of folic acid (up from 1), 15mg of methotrexate (same), 2000mg of sulfasalazine (same). Tylenol or advil as needed during the day and a PM med at night.
By the end of my appt, my bp was 140/88.
A little frustrated. SSDD
*takes a deep breath* I liked it when I first went into the office and she spent time with me. Now, it seems like she barely has time to check me out before she leaves the office. She asked where my pain is, I told her neck, shoulder hands and now my elbows (they never hurt before). She asked if the shot I received last time helped, I told her no, but I walked anyway. I did a week of exercise and it was ... so painful. I forced it and was down so much, it wasn't funny. Because my inflamation went down to normal, she said it was probably my fibro. Oh, and my blood pressure was 165/118. I've never been that high before. She said no shot because it didn't help and my BP was too high.
She had the nurse draw blood and give me a TB test (so we can be prepared for biologics if it comes to that). I go back today to get it read.
If the pain persists, then she will send me t a pain management secialist. Until my next visit in 2 months, I'm now on 60mg of cymbalta (up from 30), 2mg of folic acid (up from 1), 15mg of methotrexate (same), 2000mg of sulfasalazine (same). Tylenol or advil as needed during the day and a PM med at night.
By the end of my appt, my bp was 140/88.
A little frustrated. SSDD
Monday, June 20, 2011
Months of pain
The last time I went to my rheum, was in April. I had bloodwork done and it said my inflamation was down. I was also given a shot. It was supposed to help with the pain so I could exercise more. It did nothing for the pain.
I'm still on 15mg methotrexate every Friday, 2000mg sulfasalazine every day, and 30 mg of cymbalta every day. I am limited to acetaminophen, ibuprofen or naprosyn. Tramadol conflict with cymbalta, so I can't take that.
I tried walking after the shot, and it was not good. I forced it, regardless. I then gave up, tired of the pain.
I have gone to taking acetaminophen or ibuprofen PM medicines when Keith is home or at night, so I can get some sort of rest or relief from the pain. I know it only masks the pain, but I have to do something so I can function.
When I'm in this much pain, I really would just love to be held, cuddled, anything of the sort, because it reminds me that I'm loved, regardless of how I am feeling.
All I have wanted to do the past few months was cry. Today the pains are so sharp in my shoulders, I swear someone has an icepick and jabbing it into the bones. My hips are the same way.
The new nsaid the doc gave me is useless. Nabumetone. It also comes with a huge warning about heart risks. For prolonged use or for those people who have heart problems, high blood pressure or high cholesterol. Makes me leery of taking it. I've taken 2 and have had no relief. I would think the medication would be like most pain relievers - be affective after 30 minutes or so.
I missed my last appointment, and it was even for the better, because I couldn't drive. I just had the dates mixed arond. I am fortunate that I get to attend one this Wednesday. I need to get a list of concerns/questions going so that I am more prepared. I wish I had an adult who could go with me, to facilitate the questions, etc.
I try so hard to not let any of this get to me, but lately, I just can't help it. I hurt so much and it's affecting me mentally. I think it's affecting my children, too. Yesterday was too much. I couldn't do ANYTHING and it was Father's Day. I was able to make it out to lunch. I apologized so many times. I am so glad Keith understands.
I guess I am just needing a lot of TLC right now.
I'm still on 15mg methotrexate every Friday, 2000mg sulfasalazine every day, and 30 mg of cymbalta every day. I am limited to acetaminophen, ibuprofen or naprosyn. Tramadol conflict with cymbalta, so I can't take that.
I tried walking after the shot, and it was not good. I forced it, regardless. I then gave up, tired of the pain.
I have gone to taking acetaminophen or ibuprofen PM medicines when Keith is home or at night, so I can get some sort of rest or relief from the pain. I know it only masks the pain, but I have to do something so I can function.
When I'm in this much pain, I really would just love to be held, cuddled, anything of the sort, because it reminds me that I'm loved, regardless of how I am feeling.
All I have wanted to do the past few months was cry. Today the pains are so sharp in my shoulders, I swear someone has an icepick and jabbing it into the bones. My hips are the same way.
The new nsaid the doc gave me is useless. Nabumetone. It also comes with a huge warning about heart risks. For prolonged use or for those people who have heart problems, high blood pressure or high cholesterol. Makes me leery of taking it. I've taken 2 and have had no relief. I would think the medication would be like most pain relievers - be affective after 30 minutes or so.
I missed my last appointment, and it was even for the better, because I couldn't drive. I just had the dates mixed arond. I am fortunate that I get to attend one this Wednesday. I need to get a list of concerns/questions going so that I am more prepared. I wish I had an adult who could go with me, to facilitate the questions, etc.
I try so hard to not let any of this get to me, but lately, I just can't help it. I hurt so much and it's affecting me mentally. I think it's affecting my children, too. Yesterday was too much. I couldn't do ANYTHING and it was Father's Day. I was able to make it out to lunch. I apologized so many times. I am so glad Keith understands.
I guess I am just needing a lot of TLC right now.
Thursday, May 26, 2011
Ow?
Okay, since my last post, I did get another shot. It was apparently to help me get moving. Now I have to wonder if I even received medicine in the shot, because I felt no relief. However, not thinking, before I went to the doc, I took naprosyn. I wonder if that somehow skewed the blood results, because my inflmation was down.
Since then, my pain has come on strong, subsided slightly (after mtx on Friday) then come back again. The most I can do is sit and read/comment on twitter or facebook. I used to play World of Warcraft, but I can't even enjoy that because my hands hurt so bad. Voice command on that would be a lot better.
I took a survey that asked if I have problems with buttons, tying shoes, etc. I started thinking about my life over the past few years (if not longer). I've converted to bras that fasten in front (I can't move my arms to do the back fastens). I keep my hair in a ponytail constantly because I can't brush my hair, it hurts my shoulders/wrists/fingers too much. I've converted to a battery operated toothbrush because I of the pain when using a regular one. I bought a pair of "tennis shoes" that have no ties/back so I can just slip my feet in them. All my shirts are pre-buttoned so I can just slip them over my head. And whenever possible, I wear pants/shorts that require no zipping/buttoning.
I also started remembering when I first had back pain. I was 13. Knee pain when I was in high school. Both were attributed to my active life. I rode bikes, played volleyball (I dove for the balls), did gymnastics (not taught professionally), ran, walked, etc. Because the pain I had was always dismissed as "nothing" I just pretty much learned to ignore it.
By the time I was on my own, I was religiously wearing knee braces. I was not overweight, then. I was in the military and was very far below the weight allowance. I was still active, walking, running, dancing (a lot).
It was about the time I was 23 when fatigue started being a huge issue. Military doctors attributed it to stress and sent me to various stress management classes. Even with all the techniques, I was still tired most of the time, and if I wasn't kept busy, I would fall asleep very fast. Not one doctor thought of running blood tests or to check for Vit D deficiency.
Around age 23-24, I started experiencing more and more back pain. More hip pain (bi-lateral) and my knees and shoulders "crunched" when moved. I was still super active, rollerblading, running, walking, lifting weights, etc.
Then I got preg with my first child. Toxemia took over and I've been fighting my weight and blood pressure ever since. After him, my back hurt a little more than normal, but I kept being active. Then, my daughter came and she was vbac. same pain, same activity, but now officially diagnosed with depression. It would be 10 yrs after that when I realize I had been depressed since I was 11 or 12 years old.
It was somewhere after her and during our move to Texas my pain started getting worse. Mainly in my back and wrists. I could type anything for as long as I wanted as long as it was on an ergo keyboard. My ability to write for periods of time began diminishing as well, too much pain in my wrists/fingers.
It wasn't until I stopped being "busy" every second of the day that I realized I was in constant back pain, that my knees, neck, shoulders, wrists and fingers hurt. The back, knees and neck were the worst of it all.
I went to a chiropractor and found out my lower back was broken at some point. I was under constant care for 3 years then I got pregnant and I cut back on visits.
Even during all this, I was stil walking as often as I could. Then, I have our last child and life changed. I thought it was the lack of activity because I was on bedrest for 5 months, or even the c-section. But my hands started hurting more and more. I kept going, ignoring it. Figured it was over use. Then all the other joints began to chime in and remind me they hurt, a lot.
It took over 4 years for me to find a rheumatologist and a GP that listened when I said, "This isn't normal. I've never been typical in my life, something is WRONG."
Now, almost a year after the rheumatologist, I'm on meds, but the pain is crazy bad. I think it's because I went for so long without anyone listening/treating me. I also think it's because I spent so many years ignoring the pain, keeping busy to keep my mind off things.
Right now, I just know something has to give. Over the past 2 weeks, I've had to have my daugther help me put my bra on because I can't move my arms the "right" way. When she isn't here, I take a hot shower to relieve some pain for a while so I can force my arms to do what they need to do.
I feel so guilty having to rely on my children and husband to do things for me.
So, with my diagnosis of RA/Fibromyalgia and depression, I'm on 15mg Mtx weekly, 2000mg sulfasalazine daily, 30 mg of cymbalta daily, 1 mg folic acid daily. Plus, because I can't seem to absorb Vitamin D - I take 5000-6000 mg daily. No pain killers have been prescribed. I take 1000mg ibuprofen at a time, about ever 6-8 hours. Sometimes I'll take 1 naprosyn (200mg) but it won't touch the pain.
Since then, my pain has come on strong, subsided slightly (after mtx on Friday) then come back again. The most I can do is sit and read/comment on twitter or facebook. I used to play World of Warcraft, but I can't even enjoy that because my hands hurt so bad. Voice command on that would be a lot better.
I took a survey that asked if I have problems with buttons, tying shoes, etc. I started thinking about my life over the past few years (if not longer). I've converted to bras that fasten in front (I can't move my arms to do the back fastens). I keep my hair in a ponytail constantly because I can't brush my hair, it hurts my shoulders/wrists/fingers too much. I've converted to a battery operated toothbrush because I of the pain when using a regular one. I bought a pair of "tennis shoes" that have no ties/back so I can just slip my feet in them. All my shirts are pre-buttoned so I can just slip them over my head. And whenever possible, I wear pants/shorts that require no zipping/buttoning.
I also started remembering when I first had back pain. I was 13. Knee pain when I was in high school. Both were attributed to my active life. I rode bikes, played volleyball (I dove for the balls), did gymnastics (not taught professionally), ran, walked, etc. Because the pain I had was always dismissed as "nothing" I just pretty much learned to ignore it.
By the time I was on my own, I was religiously wearing knee braces. I was not overweight, then. I was in the military and was very far below the weight allowance. I was still active, walking, running, dancing (a lot).
It was about the time I was 23 when fatigue started being a huge issue. Military doctors attributed it to stress and sent me to various stress management classes. Even with all the techniques, I was still tired most of the time, and if I wasn't kept busy, I would fall asleep very fast. Not one doctor thought of running blood tests or to check for Vit D deficiency.
Around age 23-24, I started experiencing more and more back pain. More hip pain (bi-lateral) and my knees and shoulders "crunched" when moved. I was still super active, rollerblading, running, walking, lifting weights, etc.
Then I got preg with my first child. Toxemia took over and I've been fighting my weight and blood pressure ever since. After him, my back hurt a little more than normal, but I kept being active. Then, my daughter came and she was vbac. same pain, same activity, but now officially diagnosed with depression. It would be 10 yrs after that when I realize I had been depressed since I was 11 or 12 years old.
It was somewhere after her and during our move to Texas my pain started getting worse. Mainly in my back and wrists. I could type anything for as long as I wanted as long as it was on an ergo keyboard. My ability to write for periods of time began diminishing as well, too much pain in my wrists/fingers.
It wasn't until I stopped being "busy" every second of the day that I realized I was in constant back pain, that my knees, neck, shoulders, wrists and fingers hurt. The back, knees and neck were the worst of it all.
I went to a chiropractor and found out my lower back was broken at some point. I was under constant care for 3 years then I got pregnant and I cut back on visits.
Even during all this, I was stil walking as often as I could. Then, I have our last child and life changed. I thought it was the lack of activity because I was on bedrest for 5 months, or even the c-section. But my hands started hurting more and more. I kept going, ignoring it. Figured it was over use. Then all the other joints began to chime in and remind me they hurt, a lot.
It took over 4 years for me to find a rheumatologist and a GP that listened when I said, "This isn't normal. I've never been typical in my life, something is WRONG."
Now, almost a year after the rheumatologist, I'm on meds, but the pain is crazy bad. I think it's because I went for so long without anyone listening/treating me. I also think it's because I spent so many years ignoring the pain, keeping busy to keep my mind off things.
Right now, I just know something has to give. Over the past 2 weeks, I've had to have my daugther help me put my bra on because I can't move my arms the "right" way. When she isn't here, I take a hot shower to relieve some pain for a while so I can force my arms to do what they need to do.
I feel so guilty having to rely on my children and husband to do things for me.
So, with my diagnosis of RA/Fibromyalgia and depression, I'm on 15mg Mtx weekly, 2000mg sulfasalazine daily, 30 mg of cymbalta daily, 1 mg folic acid daily. Plus, because I can't seem to absorb Vitamin D - I take 5000-6000 mg daily. No pain killers have been prescribed. I take 1000mg ibuprofen at a time, about ever 6-8 hours. Sometimes I'll take 1 naprosyn (200mg) but it won't touch the pain.
Thursday, April 14, 2011
To get a shot or not
On 3/1/11 my rheum gave me a steroid shot because my flare was severely out of control. The relief was felt within 2 hours and amazing within 24 hours. After two weeks, though, I could feel pain coming back. By my appointment on 4/12/11, my hands, hips, elbows, lower back and neck were in pain. Not as severe as before, but definitely not fun. I'm now tolerating methotrexate and sulfasalazine well. Cymbalta is helping the fibro and depression. Now... if I can combat my fatigue. I was thinking how annoying it was to get a shot, feel the amazing relief, then feel it slowly come back. It's discouraging, in a way, because I can go do stuff, my body isn't battling as much (or so it seems) and I felt... "normal". All I wanted to do when the pain started creeping back in, was cry. I guess maybe one day I'll let that out. After talking with my rheum, she is going to review my bloodwork and then recommend some possible changes in my medication. I'm only on 6 methotrexate tablets per week and on the max dose of sulfa. It's been 9 months on MTX - 8 on the 15mg dose; 4 months on sulfa, 3 on the full dose. My options are for the increase in MTX and stay on sulfa; go to injection (we both want to wait until it's not an option before we do that) and stay on sulfa; or increase MTX and go to another injectable and remove sulfa. I do NOT like the thought of injecting myself. And I don't feel it's right to have my husband do it for me. My neck pain is more than likely RA related, by why is my lower back in so much pain (other than the fact it was broken at some point in life and didn't heal correctly). The recommendation to combat my fatigue was to exercise 30 min/day. I hadn't been raising my heart rate enough, I guess. I wish I had access to an indoor pool and the time to go do it. During the summer, I have access to a pool, and will have my 2 oldest to help with the 4 yr old, so I can exercise and play with them at the same time. I have an air walker and forced 30 minutes out, ended up taking an Aleve shortly after for pain. I've also walked about a mile, increasing my pace to get my heart rate up on 3/12 and 3/13. *sigh* I just have so much on my mind. Another "kicker" is my lymph nodes are inflamed. I will call tomorrow to schedule an appointment with my primary care doc for next week if they have not gone down. Any thoughts, comments are welcome.
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