9-9-11
I need to make my appointments soon. Yesterday at 3:00 PM, my BP was 167/114 - and I couldn't go to urgent care or to the doctor. It was braces, pick up son, cross country practice, etc. At 9:30 PM, it was 147/101. I haven't checked it today. I seriously hate that Cymbalta raises my BP so much. When I was off it, my BP was normal.
My fatigue is crazy. Really driving me bananas.
I am just having a heck of a time no being blah.
For now, that has to be all. I will try to write more later.
8-26-11
I created a spreadsheet & graphs for the blood work I've had done over the past year, since I found a doctor who listened and diagnosed me with RA. I've noticed a few trends. One of them, the medicine is working to reduce the inflammation rated in my blood associated with RA. The second, my glucose likes to spike. Something I think I've had a problem with since pregnancy with my last babe. Third, that the RDW - I'll have to look it up again - is consistently getting higher and out of limits. Not sure what all this means, I'm not sure the rheum looks at the history like I have. I still need to make an appointment with a pain management specialist and one with my GP. I have also seem to have developed RLS.
With all this on my mind, and the pain, I've not been very social. I asked the twitter support group I found if anyone else had this desire to just give up and say I'm tired of this crap, take it away, and there was an overwhelming response of yes.
Things have gotten so crappy with my RA that I can't enjoy the MMORPG I like to play because of the hand movements required. I can go do stuff, like simple quests, but I can no longer heal a party or raid. Very disappointing, as it was my escape. So, I created my "alter ego" on twitter and a website where I write erotica type short stories.
Anyway, enough complaining. Hope you all have a great day.
8-19-11
Went to my rheumatologist today. Ever since I started on Cymbalta for the fibromyalgia & depression, my BP has elevated at least 20 point dia & sys. Which means, no matter how much pain I'm in (if it's from inflammation) I can't get a steroid shot or pills to help reduce it.
Explained that for about 4-5 weeks my pain has been getting increasingly worse. Mostly in the joints. My fibro points were NOT active today, maybe 1 was.
She asked if I was taking my medicines. I said yes. Religiously. I also have 2 children who will NOT let me forget to take medication. The pain is crappy. I explained that it feels like someone has crowbars prying my joints apart.
This is probably the longest she has spoken with me in the last 4 appointments.
She says she doesn't understand. One visit, I'm okay, another, I'm not. My inflammation levels are below the limit, so it's not the RA inflammation hurting me.
I also found out today, that sunlight will cause me to flare. Well, for the past month or so, I've been outside with band practice or cross country or just walking with the kids or even at the pool. I've lost 5 lbs.
She asked if I'm exercising. Yes. Walking when I can, not speedy, but I walk.
So, it's not fibromyalgia and not RA causing my pain, so she is sending me to pain management. I have the card for who she recommended, and the name of a PM doc my husband's boss uses. I am going to do more research before I make a decision.
Today's blood tests should be emailed to me Monday or Tuesday. All the normal stuff and a Vitamin D check.
She also suggested I go to my general doctor or my GYN to see if my hormones are out of whack.
There is still the fact that RA does NOT affect my neck/back so... what do I do there?
Friday, September 9, 2011
Friday, July 29, 2011
I swear I'm pushing people away
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*
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*
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.
Wednesday, March 16, 2011
Slowly coming back
Well, the shot lasted roughly 2 weeks and the pain is slowly coming back. I'm just so glad for the relief I had. Hopefully this level will last for longer and not get worse.
The Cymbalta is working well, too. My skin isn't on fire or painful to the touch, and my depression is more manageable. I knew it would work nicely for the depression, but didn't realize how it could help fibromyalgia.
I go back into the rheum in a few weeks. I think she is pondering changing my meds a little, because the inflamation rate just won't go down. I am glad she doesn't believe in giving me a steroid on a perm basis.
I have noticed, though, the longer I'm on MTX and Sulfa, the more dry my mouth gets. I'm going through water like it's.... water *giggles*
I wrote a poem about RA and the pain I feel, and how _I_ feel daily. Kelly Young, a great advocate for RA put it to music. Here is a link to her blog:
http://rawarrior.com/isolation-of-ra-pain-poem-video/
Enjoy.
The Cymbalta is working well, too. My skin isn't on fire or painful to the touch, and my depression is more manageable. I knew it would work nicely for the depression, but didn't realize how it could help fibromyalgia.
I go back into the rheum in a few weeks. I think she is pondering changing my meds a little, because the inflamation rate just won't go down. I am glad she doesn't believe in giving me a steroid on a perm basis.
I have noticed, though, the longer I'm on MTX and Sulfa, the more dry my mouth gets. I'm going through water like it's.... water *giggles*
I wrote a poem about RA and the pain I feel, and how _I_ feel daily. Kelly Young, a great advocate for RA put it to music. Here is a link to her blog:
http://rawarrior.com/isolation-of-ra-pain-poem-video/
Enjoy.
Friday, March 4, 2011
Amazing relief
So, 1 Mar, I went to my rheum. I've been feeling wiped out and in more pain than I would ever admit. My family knows if I admit ANY pain, than I'm above my threshold.
I talked to her about the pain I had, how it started nearly 5 weeks ago with the RA pain, and within the past week to 2 weeks, my skin started feeling as if someone was taking thin, sharp needles and running them along my legs. I also told her my depression was coming back and it has been 7 months since I've been on an antidepressant or fibrmyalgia medication.
She didn't change my Methotrexate or the Sulfazine. We added Cymbalta to the mix and I received a steroid shot. I think all the weight lifted off my shoulders after seeing her, because I was utterly exhausted. I got home and took my first Cymbalta. I figured between the shot and the Cymbalta, I'd feel relief in a couple days.
Well, the pain, for the most part, was down 90% by 2 Mar. I swore I was imagining things. I was still sleepy, because for some reason, with the steroid shots (only my 2nd), my brain goes on overdrive, no matter how exhausted I am. So, every time I needed to turn over, I ended up tweeting in my dreams. *rolls eyes*
The night of 2 Mar, instead of tweeting, every time I woke up, I was singing a new country song in my head, so I guess I was a DJ of sort.
Yesterday, I walked slow, but I wasn't in intense pain, only little stabs of pain here and there, and my skin...doesn't scream at me anymore.
Who would have thought I could feel decent? I hate being dependent on medications to feel well, happy, etc. But, I think I learned my lesson. When my next flare decides to rear it's ugly head, I will be calling the doctor to see what she can do to help, because feeling this way is just...awesome.
I did, however, forget to ask a few questions. I need to remember to write these things down.
OH! So, I did the RAFit Kit survey online to get a "customized" workout. I wish I had asked my rheum in December, because she would have told me what I learned the other day. The exercises were NOT tailored at all for me. And when I told her about it, we both said at the same time, "It was just to get me information about a biologic."
Well, time to get on with the rest of my day.
I talked to her about the pain I had, how it started nearly 5 weeks ago with the RA pain, and within the past week to 2 weeks, my skin started feeling as if someone was taking thin, sharp needles and running them along my legs. I also told her my depression was coming back and it has been 7 months since I've been on an antidepressant or fibrmyalgia medication.
She didn't change my Methotrexate or the Sulfazine. We added Cymbalta to the mix and I received a steroid shot. I think all the weight lifted off my shoulders after seeing her, because I was utterly exhausted. I got home and took my first Cymbalta. I figured between the shot and the Cymbalta, I'd feel relief in a couple days.
Well, the pain, for the most part, was down 90% by 2 Mar. I swore I was imagining things. I was still sleepy, because for some reason, with the steroid shots (only my 2nd), my brain goes on overdrive, no matter how exhausted I am. So, every time I needed to turn over, I ended up tweeting in my dreams. *rolls eyes*
The night of 2 Mar, instead of tweeting, every time I woke up, I was singing a new country song in my head, so I guess I was a DJ of sort.
Yesterday, I walked slow, but I wasn't in intense pain, only little stabs of pain here and there, and my skin...doesn't scream at me anymore.
Who would have thought I could feel decent? I hate being dependent on medications to feel well, happy, etc. But, I think I learned my lesson. When my next flare decides to rear it's ugly head, I will be calling the doctor to see what she can do to help, because feeling this way is just...awesome.
I did, however, forget to ask a few questions. I need to remember to write these things down.
OH! So, I did the RAFit Kit survey online to get a "customized" workout. I wish I had asked my rheum in December, because she would have told me what I learned the other day. The exercises were NOT tailored at all for me. And when I told her about it, we both said at the same time, "It was just to get me information about a biologic."
Well, time to get on with the rest of my day.
Monday, February 28, 2011
Something new to me
So, Saturday night, I picked up my daughter's new book Vampire Diaries and began reading it. I just wanted to check out the writing style, etc. I looked at my finger holding the book open, both hands, and they were dark. In the absence of light in the room (the light behind me in the kitchen was on) it looked like they were black.
I went into a panic. I've never seen my fingers turn purple before. From my 2nd knuckle to my finger tips were deep purple (even after the light was turned on) on all 10 fingers, all the way around them. Between the 2nd and 3rd knuckles, they were starting to change colors.
Oddly enough, they were very cold too. But, my hands have been cold before and not turned colors. My husband looked at them and just held them for a few minutes. I bundled them in a blanket for about 20-30 minutes and then looked at them. They were still slightly purple, but not cold anymore. About 1 hr after that, the normal flesh color had returned to my hands and finger tips.
I had looked at my feet/toes during this, and they were not affected with the same thing.
Looking at them today, I notice that one of the veins he looked at and asked if it was normal, is not as prominent.
I went into a panic. I've never seen my fingers turn purple before. From my 2nd knuckle to my finger tips were deep purple (even after the light was turned on) on all 10 fingers, all the way around them. Between the 2nd and 3rd knuckles, they were starting to change colors.
Oddly enough, they were very cold too. But, my hands have been cold before and not turned colors. My husband looked at them and just held them for a few minutes. I bundled them in a blanket for about 20-30 minutes and then looked at them. They were still slightly purple, but not cold anymore. About 1 hr after that, the normal flesh color had returned to my hands and finger tips.
I had looked at my feet/toes during this, and they were not affected with the same thing.
Looking at them today, I notice that one of the veins he looked at and asked if it was normal, is not as prominent.
Monday, February 21, 2011
The past 4 weeks
Not sure if it was the freezing weather that spawned the latest flare for my RA, but whatever did, I wish it hadn't. I'd feel semi-decent and then go out and quick shopping (between snow storms, or just to grab something that I need to finish dinner) and come home, feeling 3x as bad as I did in the morning and by the next day, I'd hang up any thought of being active.
I finally break down and get a refill on my tramadol. That helped. took the edge off the pain, although the pain was still near my threshold.
Of course, we had a great weekend, about 2 weeks ago, and I helped spring clean the garage. How I wish I only had sore muscles after that.
Then, giving into normal human urges...wasn't any help to me at all. It never is a good idea, I pay for it for 2 days, but...
Then, my body decides to revolt against me with the last methotrexate dosage. I've not felt that sick after mtx ever. I had to give in and spend most of the day Sunday in bed. I took my 3 mg of folic acid dosage (usually I just take one) last night and my stomach seems to be less angry with me today.
And, if things couldn't get weirder, my fibromyalgia decided to rear it's ugly head again. My clothing touching my skin sends sharp pain through me. That I haven't felt in over a year.
Today, although it's President's Day, doesn't mean anyone in the house is home but my 4 yr old and I. Kids are at school and hubby is at work. I think knowing I'd be alone today made me ignore most of the nausea/pain than I did Saturday and Sunday.
I can only hope things improve as the day/week unfold.
I finally break down and get a refill on my tramadol. That helped. took the edge off the pain, although the pain was still near my threshold.
Of course, we had a great weekend, about 2 weeks ago, and I helped spring clean the garage. How I wish I only had sore muscles after that.
Then, giving into normal human urges...wasn't any help to me at all. It never is a good idea, I pay for it for 2 days, but...
Then, my body decides to revolt against me with the last methotrexate dosage. I've not felt that sick after mtx ever. I had to give in and spend most of the day Sunday in bed. I took my 3 mg of folic acid dosage (usually I just take one) last night and my stomach seems to be less angry with me today.
And, if things couldn't get weirder, my fibromyalgia decided to rear it's ugly head again. My clothing touching my skin sends sharp pain through me. That I haven't felt in over a year.
Today, although it's President's Day, doesn't mean anyone in the house is home but my 4 yr old and I. Kids are at school and hubby is at work. I think knowing I'd be alone today made me ignore most of the nausea/pain than I did Saturday and Sunday.
I can only hope things improve as the day/week unfold.
Thursday, February 17, 2011
Blog Carnival - by Rheumatoid Arthritis Warrior
SUBJECT: "Are Rheum patients pressured to not take medical treatment? Have you ever read an article that sounds like it discourages medical treatment for rheumatologic conditions? Whether the alternative offered is Eastern medicine, non-prescription medicines, or dietary changes, or spiritual advice, what would you liek to say to anyone who would tell patients to forgo medical treatment."
BLOG RESPONSE: I think the only time I can remember that it was suggested that I seek an alternative treatment for my pain, was when it sounded like my primary care physician (PCP) was giving up on me and the pain I'm deal with daily.
I went in because I couldn't handle the pain any longer, and I had not decided to find a new rheumatologist yet, and was asking what could be done for the pain, and if there was anything other than tramadol. He said that it seemed like Western medicine was not working and that I should try accupuncture.
And yet, now that I type that, I recall my chiropractor suggesting multiple times that I try this cleansing diet to lose weight because it will help with my pain. And, since I couldn't afford it, he wrote down the names of some items I could purchase at GNC that would do the same thing.
Last I checked, I didn't walk on my head, hands, so losing weight would NOT help with the pain in my neck, hands, wrists, shoulders. Yes, I could probably stand to lose weight, but since I don't snack all day, over eat, most of the "diets" out there are not for me. I was exercising, but as I got worse with pain, the exercise took back seat to everything else.
What would I love to say to people who haven't been in my (our) shoes, feeling the pain I (we) have, day in/day out at times, who think it's all in our head, that no medicine can help us because we need to think/do this or that.... wow...
Until people walk in my shoes, don't think that medicinal treatments are not a viable option. It may take a while to get into my system (everything takes a long time to get into the system), but they help ease the pain I feel and slow down the progress of my disease. I've had such great improvement on the medicines I'm taking and it's only been seven months. I don't go into the doctor's office begging for medicine, I go for the expert opinion of the person who studied my disease and knows how to treat it. I don't want more than what is going to help reduce the pain and have it barable.
None of what I'm feeling is IN my head. I'm not imaging the pain. I don't dwell on it. I won't talk about it because most people don't want to HEAR about what is happening with someone else, or, they have to one up the other person.
I'm open to other ways of treating this in conjunction with what I'm undergoing, as long as it doesn't conflict with my current treatment.
I don't want anyone to press upon me their thoughts/views as to how I need to be treated or what I need to look into for help. I want the doctors to listen and believe me, not think I'm fabricating things. I want family and friends to be there when I need to talk or need a shoulder to cry on, because 9/10 of the time, that's what I need from them. Not advice, just someone to listen.
BLOG RESPONSE: I think the only time I can remember that it was suggested that I seek an alternative treatment for my pain, was when it sounded like my primary care physician (PCP) was giving up on me and the pain I'm deal with daily.
I went in because I couldn't handle the pain any longer, and I had not decided to find a new rheumatologist yet, and was asking what could be done for the pain, and if there was anything other than tramadol. He said that it seemed like Western medicine was not working and that I should try accupuncture.
And yet, now that I type that, I recall my chiropractor suggesting multiple times that I try this cleansing diet to lose weight because it will help with my pain. And, since I couldn't afford it, he wrote down the names of some items I could purchase at GNC that would do the same thing.
Last I checked, I didn't walk on my head, hands, so losing weight would NOT help with the pain in my neck, hands, wrists, shoulders. Yes, I could probably stand to lose weight, but since I don't snack all day, over eat, most of the "diets" out there are not for me. I was exercising, but as I got worse with pain, the exercise took back seat to everything else.
What would I love to say to people who haven't been in my (our) shoes, feeling the pain I (we) have, day in/day out at times, who think it's all in our head, that no medicine can help us because we need to think/do this or that.... wow...
Until people walk in my shoes, don't think that medicinal treatments are not a viable option. It may take a while to get into my system (everything takes a long time to get into the system), but they help ease the pain I feel and slow down the progress of my disease. I've had such great improvement on the medicines I'm taking and it's only been seven months. I don't go into the doctor's office begging for medicine, I go for the expert opinion of the person who studied my disease and knows how to treat it. I don't want more than what is going to help reduce the pain and have it barable.
None of what I'm feeling is IN my head. I'm not imaging the pain. I don't dwell on it. I won't talk about it because most people don't want to HEAR about what is happening with someone else, or, they have to one up the other person.
I'm open to other ways of treating this in conjunction with what I'm undergoing, as long as it doesn't conflict with my current treatment.
I don't want anyone to press upon me their thoughts/views as to how I need to be treated or what I need to look into for help. I want the doctors to listen and believe me, not think I'm fabricating things. I want family and friends to be there when I need to talk or need a shoulder to cry on, because 9/10 of the time, that's what I need from them. Not advice, just someone to listen.
Introduction
I can't really remember when I first started having pain. The pain in my lower back has been plaguing me for many years. I've had problems with my joints before, but usually only when it's really cold outside. For that, I would just wrap them with an ace bandage and be done with it.
I started noticing my hands hurting shortly after my husband bought me an iPhone for our anniversary. It's a 3G and sort of had just come onto the market. So, I stopped "playing" on it and used it solely for calls. That didn't seem to make a difference. I can't remember if that was before or after our son was born in 06.
But, I do remember, that after he was born, I began developing a "rash" behind my ears (similar to what I had as a child, pre-pubescent) and on my face. Then it spread to my underarms and chest - which I didn't have as a child. I went to the doc and was told it was only seborrhea (sp) and given some cream and told to use Selson Blue. Well, when that didn't work, I went back and was told to do the same thing, but it had become infected, so they gave me an antibiotic. I was also experiencing a lot of back pain at the time, but I guess there was no putting 2 and 2 together.
Then, the pain started getting worse. My hips and knees and feet were horrible. I continued to walk, but my toes would get numb, but I kept at it, only to pay for it (not with sore muscles) for a couple days. I was given Mobic and told to come back, it could be OA. That he was going to do a bone density test. Well, as I showed up for my next appointment, the secretary some how didn't schedule it. By this time, I'd been seeing a chiropractor for nearly a year, because of my back, so I asked him at an appointment what could be going on, given my symptoms. He said it could be fibromyalgia.
So, at the next appointment with my Primary Care Doc, I mentioned it. I wish I hadn't. He tested the tenderspots. I had 15/16 of them. woo hoo (sarcasm) I now have fibromyalgia. Mind you, NO tests were done to rule anything else out, and because I have a broken lower back, spondylitis and psoriatic arthritis weren't even consiered.
So, I start a regime of different meds for fibro. The first was Lyrica with mobic. I basically got to a point where it wasn't working and I was distancing myself from the family. So, I found a new doctor. He ran test and my RF was high, so he sent me to a rheumatologist.
I walked in, she felt my hands, ran blood tests and scheduled a follow-up. My RF was still elevated, my Vit D lvls were extremely low. She felt my hands again and said there was no swelling, so it's not RA but only fibro and put me on neurontin. No one told me that I'd lose my sense of taste. That was bad. I ended up on something else along with mobic. But nothing was touching the joint pain I was suffering. My muscular pain and spasms subsided, fatigue came and went with the vit D getting back into my system.
Well, the new doc left and another took his place. SO, I went in and talked with him and the PA about my pain, the rash, etc. I felt like I was just talking to thin air with the doc and the Rheumatologist. I started doing studies.
The "rash" behind my ear resembles more pictures of psoriasis or sebhorrhea psoriasis than anything. The first derm I went to looked at me from 6-8 feet away and said nope, only seborrhea (more meds/creams). By this time, I'd been fighting the pain for 2-2.5 years. Could even be 3 yrs.
So, I got to talk to the PA. She agreed, my RF and rash indicate an autoimmune disease (gave me tramadol and another med for fibro that had an antidepressant in it), and scheduled a biopsy because the 2nd derm I saw (this was Jan of 2010 - so it'd been nearly 3.5 yrs now) would not do one. The results came back as a dermatitis that was caused by autoimmune disease. I went back to my original rheumatologist for her to feel my fingers, say no (RF was at 93 at this time), still only fibro. I left and cried all the way home. I wasted money and no one would listen.
I went to get my tramdol refilled, and saw the new PA at my doc's office. She ugh, more tears from me. She looked at my chart, said RA was not autoimmune and that my ANA came back neg, so my "rash" wasn't autoimmune.
I had given up. Decided to live with the pain until one of my sisters pulled me from my slump and I found a new rheumatologist who LISTENED to me. I got all my records and read thru them before I gave them to the new rheum. I cried for hours. My doctors thought I was faking it. That there could be no way I'm feeling what I was feeling.
I walked in, she talked WITH me. Not AT me. She wiped the slate clean and started over. This was June-July of last year. By this time, I'd become so bad, I couldn't walk to my driveway from my front door without immense pain.
She ran tests. Took me off all meds and gave me methotrexate and a shot of prednisone.
We are still working on getting the right combination of meds. As of December 2010, I'm on 15 mg of MTX a week, 4 tabs of sulfazine a day.
Things were working well until about 4 weeks ago. My depression is coming back in full force (maybe because it's hereditary) and the pain is unbarable. And, amazingly enough, the pain causes my "rash" to increase....
Thanks for reading.
I started noticing my hands hurting shortly after my husband bought me an iPhone for our anniversary. It's a 3G and sort of had just come onto the market. So, I stopped "playing" on it and used it solely for calls. That didn't seem to make a difference. I can't remember if that was before or after our son was born in 06.
But, I do remember, that after he was born, I began developing a "rash" behind my ears (similar to what I had as a child, pre-pubescent) and on my face. Then it spread to my underarms and chest - which I didn't have as a child. I went to the doc and was told it was only seborrhea (sp) and given some cream and told to use Selson Blue. Well, when that didn't work, I went back and was told to do the same thing, but it had become infected, so they gave me an antibiotic. I was also experiencing a lot of back pain at the time, but I guess there was no putting 2 and 2 together.
Then, the pain started getting worse. My hips and knees and feet were horrible. I continued to walk, but my toes would get numb, but I kept at it, only to pay for it (not with sore muscles) for a couple days. I was given Mobic and told to come back, it could be OA. That he was going to do a bone density test. Well, as I showed up for my next appointment, the secretary some how didn't schedule it. By this time, I'd been seeing a chiropractor for nearly a year, because of my back, so I asked him at an appointment what could be going on, given my symptoms. He said it could be fibromyalgia.
So, at the next appointment with my Primary Care Doc, I mentioned it. I wish I hadn't. He tested the tenderspots. I had 15/16 of them. woo hoo (sarcasm) I now have fibromyalgia. Mind you, NO tests were done to rule anything else out, and because I have a broken lower back, spondylitis and psoriatic arthritis weren't even consiered.
So, I start a regime of different meds for fibro. The first was Lyrica with mobic. I basically got to a point where it wasn't working and I was distancing myself from the family. So, I found a new doctor. He ran test and my RF was high, so he sent me to a rheumatologist.
I walked in, she felt my hands, ran blood tests and scheduled a follow-up. My RF was still elevated, my Vit D lvls were extremely low. She felt my hands again and said there was no swelling, so it's not RA but only fibro and put me on neurontin. No one told me that I'd lose my sense of taste. That was bad. I ended up on something else along with mobic. But nothing was touching the joint pain I was suffering. My muscular pain and spasms subsided, fatigue came and went with the vit D getting back into my system.
Well, the new doc left and another took his place. SO, I went in and talked with him and the PA about my pain, the rash, etc. I felt like I was just talking to thin air with the doc and the Rheumatologist. I started doing studies.
The "rash" behind my ear resembles more pictures of psoriasis or sebhorrhea psoriasis than anything. The first derm I went to looked at me from 6-8 feet away and said nope, only seborrhea (more meds/creams). By this time, I'd been fighting the pain for 2-2.5 years. Could even be 3 yrs.
So, I got to talk to the PA. She agreed, my RF and rash indicate an autoimmune disease (gave me tramadol and another med for fibro that had an antidepressant in it), and scheduled a biopsy because the 2nd derm I saw (this was Jan of 2010 - so it'd been nearly 3.5 yrs now) would not do one. The results came back as a dermatitis that was caused by autoimmune disease. I went back to my original rheumatologist for her to feel my fingers, say no (RF was at 93 at this time), still only fibro. I left and cried all the way home. I wasted money and no one would listen.
I went to get my tramdol refilled, and saw the new PA at my doc's office. She ugh, more tears from me. She looked at my chart, said RA was not autoimmune and that my ANA came back neg, so my "rash" wasn't autoimmune.
I had given up. Decided to live with the pain until one of my sisters pulled me from my slump and I found a new rheumatologist who LISTENED to me. I got all my records and read thru them before I gave them to the new rheum. I cried for hours. My doctors thought I was faking it. That there could be no way I'm feeling what I was feeling.
I walked in, she talked WITH me. Not AT me. She wiped the slate clean and started over. This was June-July of last year. By this time, I'd become so bad, I couldn't walk to my driveway from my front door without immense pain.
She ran tests. Took me off all meds and gave me methotrexate and a shot of prednisone.
We are still working on getting the right combination of meds. As of December 2010, I'm on 15 mg of MTX a week, 4 tabs of sulfazine a day.
Things were working well until about 4 weeks ago. My depression is coming back in full force (maybe because it's hereditary) and the pain is unbarable. And, amazingly enough, the pain causes my "rash" to increase....
Thanks for reading.
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