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Maybe RA
jdhnay25 posted:
Hi. I'm 24 years old and I've had joint issues pretty much all of my life. Around 11 or 12 I started complaining about my fingers, and my mom took me to a rheumatologist. I was told that it was just growing pains. Then when I was 16 I started having issues with my knees. My knees hurt whenever I walked and my knees started to burn. They felt like they were on fire. It hurt for wind to even touch my skin. My clothes touching my skin even hurt. Eventually they started to swell to the sizes of grapefruits and walking was all but impossible. I eventually had surgery when I was 18 (they said it was a birth defect). That surgery didn't work and I had surgery again when I was 19 on both knees again. That surgery didn't work either. I had surgery last year, 23, to remove the hardware from the 2006 surgery. In 2008, I started to have major issues with a lot of my joints. My hands started to hurt. My thumbs started to swell. My wrists hurt to move them and touch them. My shoulders became extremely tender to the touch and wearing a bra or having my clothes touch them put me in excruciating pain. I lost some ability to move my arms for a while because it was just that painful. My hips hurt when I walked and my ankles became abnormally swollen. My toes also did the same thing as my ankles. And the pain I was already experiencing off and on in my knees increased tremendously. I went to a rheumatologist again and was told that my rheumatoid factor was negative and I didn't have lupus, but my sed rate was high. He said my results were inconclusive and I just dealt with the pain for about 6 months until it went away. Last year, 2010, I started having swelling in my ankle and toes again. Then by October, I couldn't walk anymore. I had surgery to remove the hardware, because we thought it was the cause of the pain, but I'm still hurting. My thumb was swollen again last month. And now my shoulders are hurting again. It seems to me that thing that was happening in 2008 is happening again. Anybody have any ideas about what's going on with me? Did this happen to anyone else? I went to another orthopedist and they think it may be RA and that I may be one of those 25% that have a negative rheumatoid factor but still have RA and perhaps I was misdiagnosed/undiagnosed. Let me know what you think. Because this is very difficult for me and I thank God that my husband has been so supportive.
53 Replies |Watch This Discussion | Report This| Share this:Maybe RAHi. I'm 24 years old and I've had joint issues pretty much all of my life. Around 11 or 12 I started complaining about my fingers, and my mom took me to a rheumatologist. I was told that it was just growing pains. Then when I was 16 I started having issues with my knees. My knees hurt whenever I walked and my knees started to burn. They felt like they were on fire. It hurt for wind to even touch my skin. My clothes touching my skin even hurt. Eventually they started to swell to the sizes of grapefruits and walking was all but impossible. I eventually had surgery when I was 18 (they said it was a birth defect). That surgery didn't work and I had surgery again when I was 19 on both knees again. That surgery didn't work either. I had surgery last year, 23, to remove the hardware from the 2006 surgery. In 2008, I started to have major issues with a lot of my joints. My hands started to hurt. My thumbs started to swell. My wrists hurt to move them and touch them. My shoulders became extremely tender to the touch and wearing a bra or having my clothes touch them put me in excruciating pain. I lost some ability to move my arms for a while because it was just that painful. My hips hurt when I walked and my ankles became abnormally swollen. My toes also did the same thing as my ankles. And the pain I was already experiencing off and on in my knees increased tremendously. I went to a rheumatologist again and was told that my rheumatoid factor was negative and I didn't have lupus, but my sed rate was high. He said my results were inconclusive and I just dealt with the pain for about 6 months until it went away. Last year, 2010, I started having swelling in my ankle and toes again. Then by October, I couldn't walk anymore. I had surgery to remove the hardware, because we thought it was the cause of the pain, but I'm still hurting. My thumb was swollen again last month. And now my shoulders are hurting again. It seems to me that thing that was happening in 2008 is happening again. Anybody have any ideas about what's going on with me? Did this happen to anyone else? I went to another orthopedist and they think it may be RA and that I may be one of those 25% that have a negative rheumatoid factor but still have RA and perhaps I was misdiagnosed/undiagnosed. Let me know what you think. Because this is very difficult for me and I thank God that my husband has been so supportive.
Lainey_WebMD_Staff responded:
Hi Jdhnay25,
Welcome to the community! Please feel free to join our discussions or post anytime.
It sounds like you are a very strong women to endure all that pain and surgery. I look forward to member's replies.While you wait for members to reply in this community, please consider posting your question in the Pain Management community too. It may give more opportunity for members to respond. Please let me know if you need anything.
Take care,
Lainey
Welcome to the community! Please feel free to join our discussions or post anytime.
It sounds like you are a very strong women to endure all that pain and surgery. I look forward to member's replies.While you wait for members to reply in this community, please consider posting your question in the Pain Management community too. It may give more opportunity for members to respond. Please let me know if you need anything.
Take care,
Lainey
It's at the borders of pain and suffering that the men are separated from the boys.
Emil Zatopek
Report This| Share this:Maybe RAHi Jdhnay25,<br /><br />Welcome to the community! Please feel free to join our discussions or post anytime. <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"> <br /><br />It sounds like you are a very strong women to endure all that pain and surgery. I look forward to member's replies.While you wait for members to reply in this community, please consider posting your question in the <a href="http://exchanges.webmd.com/pain-management-exchange">Pain Management </a> community too. It may give more opportunity for members to respond. Please let me know if you need anything.<br /><br />Take care,<br /><br />Lainey
jdhnay25 responded:
Update: Due to my insurance I have to go back to my primary care doctor to be referred to the rheumatologist again. So I still have no idea when my appointment is. I go back to see my primary care doctor on Wednesday. My pain management doctor has me on Etolodac (even though I told him I've been on it before and it doesn't work for me), Topamax, and Hydromorphone. The hydromorphone works completely on some days and not at all on days that the pain is severe like yesterday. It helped with my knees and ankles with the pain, but my shoulder just continued to ache. And of course there's nothing that can be done about the stiffness right now. The only thing is, that lately I've become allergic to a lot of medications and I believe I'm allergic to the hydromorphone because since I started taking it, I itch a lot. As long as it's in my system, I itch. All over. Even my eyes itch and I rub them a lot and I haven't been sleeping lately either. I sleep for about 1 to 2 hours and then wake up. I hope I get some relief soon.
Report This| Share this:Maybe RAUpdate: Due to my insurance I have to go back to my primary care doctor to be referred to the rheumatologist again. So I still have no idea when my appointment is. I go back to see my primary care doctor on Wednesday. My pain management doctor has me on Etolodac (even though I told him I've been on it before and it doesn't work for me), Topamax, and Hydromorphone. The hydromorphone works completely on some days and not at all on days that the pain is severe like yesterday. It helped with my knees and ankles with the pain, but my shoulder just continued to ache. And of course there's nothing that can be done about the stiffness right now. The only thing is, that lately I've become allergic to a lot of medications and I believe I'm allergic to the hydromorphone because since I started taking it, I itch a lot. As long as it's in my system, I itch. All over. Even my eyes itch and I rub them a lot and I haven't been sleeping lately either. I sleep for about 1 to 2 hours and then wake up. I hope I get some relief soon.
More updates:
So, I'm still not sleeping. Waking up every 30 minutes to an hour in pain. I'm sure some of this is probably side effects to the meds. I had some random swelling today of my left ankle during church. I took a picture with my camera phone for documentation purposes. Things have been getting a bit harder. I have my good days and my bad days. But I'm trying to stay positive. So I guess this is my online diary and blog. I'm glad I have supportive people around me.
So, I'm still not sleeping. Waking up every 30 minutes to an hour in pain. I'm sure some of this is probably side effects to the meds. I had some random swelling today of my left ankle during church. I took a picture with my camera phone for documentation purposes. Things have been getting a bit harder. I have my good days and my bad days. But I'm trying to stay positive. So I guess this is my online diary and blog. I'm glad I have supportive people around me.
Report This| Share this:Maybe RAMore updates:<br /><br />So, I'm still not sleeping. Waking up every 30 minutes to an hour in pain. I'm sure some of this is probably side effects to the meds. I had some random swelling today of my left ankle during church. I took a picture with my camera phone for documentation purposes. Things have been getting a bit harder. I have my good days and my bad days. But I'm trying to stay positive. So I guess this is my online diary and blog. I'm glad I have supportive people around me.
New update: 5/2/2011
So now I'm having swelling in my right elbow. Not sure if it's weather related since it's really cool today, down to 57 as the high, (big drop from 98), or the yoga I tried yesterday. I may have overdid it yesterday. But my mom suggested that I keep documentation of what's happening to my body. I took more pictures and I'm icing stuff. I really wish I could get more sleep.
So now I'm having swelling in my right elbow. Not sure if it's weather related since it's really cool today, down to 57 as the high, (big drop from 98), or the yoga I tried yesterday. I may have overdid it yesterday. But my mom suggested that I keep documentation of what's happening to my body. I took more pictures and I'm icing stuff. I really wish I could get more sleep.
Report This| Share this:Maybe RANew update: 5/2/2011<br /><br />So now I'm having swelling in my right elbow. Not sure if it's weather related since it's really cool today, down to 57 as the high, (big drop from 98), or the yoga I tried yesterday. I may have overdid it yesterday. But my mom suggested that I keep documentation of what's happening to my body. I took more pictures and I'm icing stuff. I really wish I could get more sleep.
Okay, this morning was my first real day of waking up stiff. It hurt very badly to get out of bed. My fingers hurt to move them. My wrists hurt. My ankles hurt to move. My toes. Even the blanket being on them was a bit much. I was so happy to have a touch screen this morning for my phone. It took about 15 minutes for me to actually get out of the bed. Walking was very achy. I made it to work though, albeit 30 minutes late. I've taken my hydromorphone and I'm still waiting for some relief. I'm aching all over. I really don't want to be at work. I would rather be in bed asleep where I can't feel anything. I'm trying to figure out how I'm going to conduct class if my shoulders hurt to move, my fingers hurt, my wrists, my ankles, my toes, my knees, and at random times, my left hip. Even my spine is doing something wonky. And I keep feeling the need to take deep breaths as if my breathing may be in impaired. I don't feel safe driving anymore because I"m afraid that I may go to sleep. And turning door handles hurts today. But I'm still optimistic. It could be worse. I can at least move, albeit very slowly and painfully, but I can still move and to my knowledge nothing is deformed.
Report This| Share this:Maybe RAOkay, this morning was my first real day of waking up stiff. It hurt very badly to get out of bed. My fingers hurt to move them. My wrists hurt. My ankles hurt to move. My toes. Even the blanket being on them was a bit much. I was so happy to have a touch screen this morning for my phone. It took about 15 minutes for me to actually get out of the bed. Walking was very achy. I made it to work though, albeit 30 minutes late. I've taken my hydromorphone and I'm still waiting for some relief. I'm aching all over. I really don't want to be at work. I would rather be in bed asleep where I can't feel anything. I'm trying to figure out how I'm going to conduct class if my shoulders hurt to move, my fingers hurt, my wrists, my ankles, my toes, my knees, and at random times, my left hip. Even my spine is doing something wonky. And I keep feeling the need to take deep breaths as if my breathing may be in impaired. I don't feel safe driving anymore because I"m afraid that I may go to sleep. And turning door handles hurts today. But I'm still optimistic. It could be worse. I can at least move, albeit very slowly and painfully, but I can still move and to my knowledge nothing is deformed.
Lainey_WebMD_Staff replied to jdhnay25's response:
Hi Jdhnay25,
I am sorry you are still in pain and hope you feel better soon. It's a very good idea to keep a journal of your flare ups.
Have you contacted your PCP and let them know of your pain?
I am sorry you are still in pain and hope you feel better soon. It's a very good idea to keep a journal of your flare ups.
Have you contacted your PCP and let them know of your pain?
It's at the borders of pain and suffering that the men are separated from the boys.
Emil Zatopek
Report This| Share this:Maybe RAHi Jdhnay25,<br /><br />I am sorry you are still in pain and hope you feel better soon. It's a very good idea to keep a journal of your flare ups. <br /><br />Have you contacted your PCP and let them know of your pain?
jdhnay25 replied to Lainey_WebMD_Staff's response:
Yes I have. I'm supposed to go to the doctor tomorrow for a referral to the rheumatologist, but I'm going to update my PCP about my pain as well.
Report This| Share this:Maybe RAYes I have. I'm supposed to go to the doctor tomorrow for a referral to the rheumatologist, but I'm going to update my PCP about my pain as well.
Lainey_WebMD_Staff replied to jdhnay25's response:
Good idea Jdhnay25,
I hope your PCP can help. Please let us know how the appointment goes.
Lainey
I hope your PCP can help. Please let us know how the appointment goes.
Lainey
It's at the borders of pain and suffering that the men are separated from the boys.
Emil Zatopek
Report This| Share this:Maybe RAGood idea Jdhnay25,<br /><br />I hope your PCP can help. Please let us know how the appointment goes. <br /><br />Lainey
jdhnay25 replied to Lainey_WebMD_Staff's response:
So the doctor said that she noticed that I had an abnormal thyroid result back in October that she didn't notice until today, so I have to go back to her in the morning at 730 for more blood work. She changed my blood pressure meds because she thinks that it may be causing my edema. I told her that these flare ups have happened once before. But she told me not get my hopes up again about finding a diagnosis because each time they've done my blood work my results either come back inconclusive or only slightly elevated, but nothing screams any disorder or disease although it's apparent that something is wrong. So my PCP wants to start investigating and ruling things out before she refers me to a rheumatologist because she wants to make sure they take me seriously instead of just casting me off like they did last time because things are inconclusive. But she told me to prepare for just dealing with the symptoms again since most of my results are coming back normal. Also, she definitely wants me to go to an allergist since I'm becoming allergic to lots of medications. So I have an appointment with an allergist at the beginning of June.
Report This| Share this:Maybe RASo the doctor said that she noticed that I had an abnormal thyroid result back in October that she didn't notice until today, so I have to go back to her in the morning at 730 for more blood work. She changed my blood pressure meds because she thinks that it may be causing my edema. I told her that these flare ups have happened once before. But she told me not get my hopes up again about finding a diagnosis because each time they've done my blood work my results either come back inconclusive or only slightly elevated, but nothing screams any disorder or disease although it's apparent that something is wrong. So my PCP wants to start investigating and ruling things out before she refers me to a rheumatologist because she wants to make sure they take me seriously instead of just casting me off like they did last time because things are inconclusive. But she told me to prepare for just dealing with the symptoms again since most of my results are coming back normal. Also, she definitely wants me to go to an allergist since I'm becoming allergic to lots of medications. So I have an appointment with an allergist at the beginning of June.
Lainey_WebMD_Staff replied to jdhnay25's response:
It sounds like you have a great doctor, Jdhnay25! I would agree to rule out everything before you see a specialist.
Let us know how your thyroid test comes out. I hope the allergist can help also.
Keep us updated how you feel too. I know some days are better than others.
Keeping my hopes up!
Lainey
Let us know how your thyroid test comes out. I hope the allergist can help also.
Keep us updated how you feel too. I know some days are better than others.
Keeping my hopes up!
Lainey
It's at the borders of pain and suffering that the men are separated from the boys.
Emil Zatopek
Report This| Share this:Maybe RAIt sounds like you have a great doctor, Jdhnay25! I would agree to rule out everything before you see a specialist. <br /><br />Let us know how your thyroid test comes out. I hope the allergist can help also. <br /><br />Keep us updated how you feel too. I know some days are better than others. <br /><br />Keeping my hopes up!<br /><br />Lainey
jdhnay25 replied to Lainey_WebMD_Staff's response:
Today was a pretty good day until the end. A lot of stuff started to swell and I'm pretty tired right now. I'm soaking my feet as I type because my ankles have been swelling. I also printed all of the pictures that I've had as documentation of my swelling and I'm in the processes of dating them. I'm so happy I took most of them with my camera phone because it includes the dates and times. Also, my knees got really big today during my last period class, so my students took pictures of them for me. Today was a moderate pain day. I almost didn't take any pain medication because I was feeling pretty well this morning, with the exception of some knee pain. I'm happy I did take some medication because by the end of the day my right shoulder was hot, red, and felt like it was on fire, my right and left wrists were hurting, my left hip ached, and my left and right ankles were swollen as well as my left and right knees.
Report This| Share this:Maybe RAToday was a pretty good day until the end. A lot of stuff started to swell and I'm pretty tired right now. I'm soaking my feet as I type because my ankles have been swelling. I also printed all of the pictures that I've had as documentation of my swelling and I'm in the processes of dating them. I'm so happy I took most of them with my camera phone because it includes the dates and times. Also, my knees got really big today during my last period class, so my students took pictures of them for me. Today was a moderate pain day. I almost didn't take any pain medication because I was feeling pretty well this morning, with the exception of some knee pain. I'm happy I did take some medication because by the end of the day my right shoulder was hot, red, and felt like it was on fire, my right and left wrists were hurting, my left hip ached, and my left and right ankles were swollen as well as my left and right knees.
So far today is looking to be a moderate to severe pain day. A lot of joints are already swollen or stiff and although I took the hydromorphone an hour ago, I'm still feeling a good deal of pain, especially in the right shoulder. But I'm going to claim that today is going to be a good day. I WILL be productive and I'm so happy that I have this community of other sufferers and supporters who encourage each other and support each other through the good and bad times. It's nice to have this outlet, especially in the middle of the work day to just type what I'm feeling and look forward to the supporting words of the other people out there who truly know what I'm going through and how I feel and let me know that I'm not alone. Thank you so much everyone!
Report This| Share this:Maybe RASo far today is looking to be a moderate to severe pain day. A lot of joints are already swollen or stiff and although I took the hydromorphone an hour ago, I'm still feeling a good deal of pain, especially in the right shoulder. But I'm going to claim that today is going to be a good day. I WILL be productive and I'm so happy that I have this community of other sufferers and supporters who encourage each other and support each other through the good and bad times. It's nice to have this outlet, especially in the middle of the work day to just type what I'm feeling and look forward to the supporting words of the other people out there who truly know what I'm going through and how I feel and let me know that I'm not alone. Thank you so much everyone! <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">
Lainey_WebMD_Staff replied to jdhnay25's response:
Hi Jdhnay
I am glad you are resting and soaking your feet, it means you will do something when you notice a problem. Your photos will be a great reference for your doctor too.
I hope you continue with good days and keep trying new things to help reduce swelling and pain.
Keep us updated we want to know how you are and it does help to learn what has worked for you and maybe what causes pain.
Have a wonderful evening!
Lainey
I am glad you are resting and soaking your feet, it means you will do something when you notice a problem. Your photos will be a great reference for your doctor too.
I hope you continue with good days and keep trying new things to help reduce swelling and pain.
Keep us updated we want to know how you are and it does help to learn what has worked for you and maybe what causes pain.
Have a wonderful evening!
Lainey
It's at the borders of pain and suffering that the men are separated from the boys.
Emil Zatopek
Report This| Share this:Maybe RAHi Jdhnay<br /><br />I am glad you are resting and soaking your feet, it means you will do something when you notice a problem. Your photos will be a great reference for your doctor too. <br /><br />I hope you continue with good days and keep trying new things to help reduce swelling and pain.<br /><br />Keep us updated we want to know how you are and it does help to learn what has worked for you and maybe what causes pain. <br /><br />Have a wonderful evening!<br /><br />Lainey
Scott Zashin, MD responded:
Becuase of the swelling and high sedimentation rate, it sounds as if you have an inflammatory arthritis. 20% of patients may have RA without the rheumatoid factor in the blood. Some of those patients who are RF negative may have a positive CCP antibody which when elevated in a moderate to high level is very specific for RA. Another condition to consider is a diagnosis called spondyloathropathy which is an inflammatory arthritis often associated with a genetic marker, HLA B 27. This genetic marker is found in the blood in up to 8% of patients. The presence of the marker does not confirm a diagnosis and the absence does not exclude a diagnosis.Most people who have the gene will never have or develop arthritis. In some cases of arthritis, a definite diagnosis cannot be made so the treatments used for other inflammatory conditons may be recommended. It is not unreasonable to get a second or third opinion from a Rheumatolgist when the diagnosis is not apparent or you are not improving.
Report This| Share this:Maybe RABecuase of the swelling and high sedimentation rate, it sounds as if you have an inflammatory arthritis. 20% of patients may have RA without the rheumatoid factor in the blood. Some of those patients who are RF negative may have a positive CCP antibody which when elevated in a moderate to high level is very specific for RA. Another condition to consider is a diagnosis called spondyloathropathy which is an inflammatory arthritis often associated with a genetic marker, HLA B 27. This genetic marker is found in the blood in up to 8% of patients. The presence of the marker does not confirm a diagnosis and the absence does not exclude a diagnosis.Most people who have the gene will never have or develop arthritis. In some cases of arthritis, a definite diagnosis cannot be made so the treatments used for other inflammatory conditons may be recommended. It is not unreasonable to get a second or third opinion from a Rheumatolgist when the diagnosis is not apparent or you are not improving.
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