Bilateral hand, wrist & knee pain
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An_215706 posted:
Hi, I woke up about 5 months ago with a sudden onset of severe pain, stiffness, swelling, and "locking" of all the joints in both hands. I've tried PT, Mobic (had to quit; too much nausea), with no relief. I started experiencing the severe pain in both knees (no trauma) about 1 month ago; now this week, bilateral wrist pain. I have decreased strength in both wrist. My ortho tested me for RA, gout, etc; all results were within normal limits. Last week, my ortho said that although the initial bloodwork came back normal/negative, I could still be suffering from RA, or some componet of RA. He referred me to a rheumatologist for further dianoses.
I was wondering if anyone else, diagnosed with RA, suffered these type of symptoms, including the normal/negative blood tests?

At this time, I have moderate/severe pain in the the joints noted above during the day. However, at night I have severe hand and wrist pain, waking up with my hands clenched tightly, severe stiffness. These symptoms last for approximately 1-2 hours before easing. The knee pain is more severe during the day when up and about.

I have trouble doing anything at all with my hands & wrists - opening doors, cans, bottles, taking the end off of the toothpaste, cutting up my food, etc. I have severe pain in both knees while doing any kind of walking or standing. My husband is extremely supportive, and helps with almost all activities of daily living.

Any insights to my symptoms, treatment options? I am getting very close to being at the end of my rope. HELP.
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lsrs5356 replied to MarySusan403's response:
Hi, MarySusan403,
I'm not sure if you have read all of my posts, or not. However, if you did, I'm sure that you noticed that I already been evaluated by a rheumy, started on medications (Arava), and am continuing on the medications. I have also been a registered nurse, with a Masters in Public Health, for the last 34 years. I have only had very minimal relief of my symptoms, to date, from the med. However, I have not even thought about stopping my med at this time. I have only been on the med for about 5 weeks - it takes up to 8 weeks, possibly more, to obtain the maximum relief from this med.
I am aware of RA, not only the symptoms, but also what it can do to your body in regards to your immune system and the destruction of your joints. Not only do you have the "normal" symptoms of RA (joint pain, swelling, stiffness, etc), but the RA itself can cause numerous problems - heart disease, lung disease, eye and mouth problems, etc.
Do you have RA? If so, please provide me with "your story".
Thank you for your imput.
 
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jdhnay25 replied to lsrs5356's response:
Your symptoms sound similar to mine. I was told that I didn't have RA back in 2008 because my Rheumatoid factor was negative, but my current Orthopedist thinks that I may have had it all along and that I'm having another flare up. It's getting increasing worse. My shoulders are red and warm. I'm having issues raising my right shoulder. The left one hurts, but not as bad. My ankles are swelling. My right hand was swollen yesterday. My wrist and shoulders ache to the point that it's difficult to get dressed or brush my teeth and typing is a pain. I have to take breaks now. I'm only 24. I just got off the phone with the appointment line, so I'm waiting for my rheumatology appointment.
 
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lsrs5356 replied to jdhnay25's response:
Hi, Jdhnay25,
I appreciate your feedback.
It can be so confusing when you get different reports from different doctors. Who do you believe? I, too, have been told that my blood work was negative for RA; then, later told that about 25-30% of blood work came back negative in patients who did indeed have RA. I have only seen my rheumy on 1 occasion, but he was great. He spent a lot of time with me, and let me fully explain my condition and symptoms. He answered all of my questions. He started my on Arava, saying that this drug would offer me the greatest relief with the least amount of side effects. It has been about 6 weeks since my first visit with the rheumy and starting on my med. But I have only had very minimal relief of the stiffness in my fingers since beginning the med. In fact, I think that I am actually worse since starting the med: it seems as though the pain and stiffness is spreading to other joints, and the "original" pain (and stiffness, swelling, warmth, etc) is getting worse. I am getting discouraged. I see the rheumy again the last of May. I really hope this med will kick in before then and I won't have to try other meds. I have read and heard so many horror stories about all of the RA meds - I hate to try anything. But, I do want relief.
I, too, have a lot of trouble just typing brief items. Trying to get dressed is painful. In fact, any activity of daily living is difficult.
Are you taking any meds right now? Any relief yet? How about side effects from the meds?
Keep me updated, and let me know how you appointment goes. I do hope that you get both answers and relief soon.
 
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jdhnay25 replied to lsrs5356's response:
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.
 
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lsrs5356 replied to jdhnay25's response:
I'm so sorry that you are having such a hard time with getting an appointment with a rheumy. And, usually, you have to wait so long to get in the docs office - that's so frustrating, especially when you're in severe pain. I'm not heard of the Etolodac, at least not yet - is it a RA med? For what reason is the Topamax being prescribed? What kind of side effects does the Etolodac have?
On Friday, 4/29, I had the very worst day that I have had since the beginning of my symptoms. It was terrible. I woke up with severe pain all over my body; my hands were very stiff, hot to the touch, and very swollen. I could not move a single joint without pain. As I stated before, I think my pain is spreading to other joints - my ankles are now hurting. The pain in my knees is getting worse. And, my left shoulder hurts terribly whenever I move my left hand/arm in any way. I still have about 4 weeks before I see my rheumy. I've only been on my med, Arava, for about 7 weeks; I was told it could take up to 8 weeks, or more, to see results. I guess I'm just getting frustrated with so little relief so far.
I'm a nurse, so I know that the morphine can definitely cause you to itch really bad. In the past, I've received morphine, and yes, I itched all over. Over-the-counter benedryl might help with the itching; not sure if it will completely resolve, though. It seems like with this disease, you have to decide just what side effects you are able or willing to live with to get relief from the RA. But, how do you decide???
I'm sorry that you are having such trouble sleeping. I know the feeling. Have you mentioned this problem to your physician? If not, mention it, and see if it is appropriate for you to take something to help you sleep. It's worth a try. I haven't had alot of trouble sleeping, as yet, but . . . I do seem like I could sleep 24 hours a day 7 days a week. I hate that feeling. You just don't feel like doing anything when all you want to do is sleep.
Please let me know how your appointment goes on Wednesday.
I wish you well and hope you get some relief soon.
 
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jdhnay25 replied to lsrs5356's response:
Thanks for the Benadryl recommendation. It kind of works. Sometimes it does, sometimes it doesn't. Perhaps I need to take two pills instead of one. The appointment with my PCP is today, so I'll let you know this afternoon how it went. Thanks for the support.
 
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lsrs5356 replied to jdhnay25's response:
Hi, jdhnay25,
Glad you got a little relief from the Benadryl. Like I said, the morphine definitely makes you itch - everybody that I have ever talked to that has taken it said that it caused them to itch. It probably would not hurt you to take 2 of the Benadryl; if I remember correctly, 2 tablets would be 50mg. BUT, definitely check the Benadryl label and see what the directions are for adults. And, you probably should check with your PCP, or whichever doctor you see, if the Benadryl is OK, of if there is something they could write a prescription for to help with the itching. Your doctor might try another pain med, something besides the morphine that would not cause the itching. However, so far, I've not found anything that really helps with the pain. I've tried Oyxcontin for the pain, and it really doesn't give me that much relief from the RA pain.
Being in so much pain, with nothing to relieve it, is so scary. I can't imagine living the rest of my life in this much pain. I only hope that my rheumy finds the right med(s) for me, with as few side effects as possible, that will relieve the pain. It seems like every day is getting worse. I don't see my doc until the end of May. That seems like a lifetime being in this kind of pain.
It seems as it becomes harder each day to perform normal, everyday activities, at least without being in pain. I'm very lucky (Ha, Ha!) that I don't have any children to care for; that would be so very hard. And, my husband goes out of his way to do as much as possible for me. But, he can't be around to do everything for me. It's just that little things are getting so hard to do; like brushing my teeth, putting on makeup, doing my hair. Bless his wonderful heart, he even offered to do my makeup and hair this morning to try to help me!!! Oh, what a wonderful sight that would be!!!
To make things terribly worse: my husband has been in severe pain for the last 6 months with newly diagnosed gout. And, now his doc thinks that he has a herniated disc in his low back that is causing horrific leg, knee, ankle, and foot pain. He cannot sleep at night because of the pain. We just went today for a lumbar MRI and a total body scan. Unfortunately, there was something abnormal on the body scan, because they called him back down to the radiology department after the completion of both tests to perform more tests. Apparently, there was some abnormalites on the bone scan. They asked him alot more questions about whether he was a heavy smoker, what kind of chest pain he had been having, etc. To make things worse, the last time he had a bone scan, he had cancer. In fact, we both were diagnosed with cancer in 2004. I am worried to death; I cannot imagine us having to go through all of that again, not to mention losing him. I just don't know what to do. He sees his doc next week to get the results. I don't know if I can stand it that long waiting on the results. At least, it will take my mind off me and my pain. I will take everything just for him to be OK!!!
Please let me know how things go today. I am waiting for a good report for you.
Take care.
 
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jdhnay25 replied to lsrs5356's response:
I'm sorry to hear about your husband. I hope things get better and that whatever is going on with him is treatable. My husband has a bulging disc in his back, but so far it's just causing him back pain. The poor man even offers to try to carry me when I can't walk even with his back pain (And I'm hardly a feather to carry). 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. Let me know how your appointment with the Rheumatologist goes as well. Take care.
 
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Lainey_WebMD_Staff replied to lsrs5356's response:
Hi Isrs5356,

I am sorry you are in pain and hope you find relief soon. None of you should have to wait to see a specialist.

You all are very inspiring to me!
It's at the borders of pain and suffering that the men are separated from the boys. Emil Zatopek
 
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lsrs5356 replied to jdhnay25's response:
Sorry your appointment wasn't all you had hoped for.
Thyroid disorders can drive you crazy with all their symptoms. Blood pressure meds aren't any better as far as side effects; I tried about 6 or 7 BP meds before I found one that controled my blood pressure and that I could tolerate. It doesn't make sense that a blood pressure med could cause edema - it is supposed to keep your pressure down and some also have a diuretic in them to reduce edema!!
Have you been told that you are "seronegative" as far as the RA is concerned? My RA factor initially came back negative with no signs of RA. But, my ortho told me that many people had negative blood work but still had RA. The ortho finally referred me to the rheummy, who again told me that just because my blood work was negative, that didn't mean I didn't have RA. He gave me a thorough exam, inquired about all of my symptoms and them told me I definitely had RA. He then ordered more blood work, ordering further RA tests. I haven't been back to him yet, but will get the results the end of the month.
I have been having really weird (spelling) symptoms the last few weeks - severe hot flashes, fast heart rate, nausea. I saw my PCP Friday - he ordered every test in the world, to include tests on my thyroid. If that is the problem, that would be all I need, another disease. Then I saw my gyn on Tuesday; she will get the tests results from my PCP. She thinks that I'm "goint thru memopause"!!!!!!! I had a hyst, with tubes and ovaries, 10 years ago, and have been on Estrogen since that time. NOW she tells me I probably going through menopause!!! LOL!! But, she also mentioned the thyroid. Maybe we'll get that issue straighted out SOON!!! I hope so for both of us.
Also, for the last week, when I saw both of the above docs, my blood pressure was very high, even though my BP is controled with meds. Both docs asked if I were in pain, and, of course, that answer was yes. I'm sure all of the pain from the RA is causing the increase, which isn't good at all. I just hope I can get everything straightened out SOOOOOON!!!!
Please keep in touch and let me know how you are doing.
Lila
 
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jdhnay25 replied to lsrs5356's response:
Lila, once again thanks for the responses and the support. Today looks like it's going to be a moderate to severe pain day. Things were starting to swell within an hour of waking up and it hurts to have my shoes on today so I'm taking them off. One of my students suggested that I start bringing houseshoes to work. I keep forgetting them, but I think they may be on to something with the houseshoes/slippers comment. I don't understand the comment my doctor made about the blood pressure medication either. It would be great to have finally have a diagnosis after all of these years. I haven't been told that I'm seronegative. I was just told that my "rheumatoid factor tests came back negative the last time we checked" So I'm not entirely sure what that means. They took blood to check for that again yesterday, so I should know something within a week hopefully. She said she'd call me if something screamed out abnormality. And I'm happy that I hadn't taken any of my meds yet before they drew my blood so it should've been nice and pure with whatever is wrong. No blood pressure pills in there, no anti inflammatories to skew the inflammation results, no pain meds. None of that should have been in there. Or very little should've been left. On a positive note, I am getting some sleep now. So that's good. I wish I could sleep a lot longer, but what I get is fine. And I'm finally listening when my body says take a nap or rest. So that's helpful. I'm still not really getting any exercise in because I've been having a lot of ankle and leg swelling this week. My knees were humungous yesterday.
The research I did on this site and the mayo clinic said that the thyroid could mess with the menstrual cycle and other female issues as well as the metabolism and producing more sweat or very little sweat since that all goes together. So hopefully it's not your thyroid, but it is good that they are checking. From my research it seems pretty easy to treat if it is though.
I wonder what's going on with your blood pressure. I know pain can increase it because we saw first hand when I was hooked to some monitors that my pressure was normal, but they started messing with my IV and causing me continuous pain and my blood pressure began to rise quickly. Although studies say that long term pain or chronic pain isn't supposed to keep your pressure high. Your body is supposed to adjust to it. That's why I was so concerned about my blood pressure since October because it was always high. Yes I was in pain all of the time, but wasn't my body supposed to adjust to the chronic pain, so that's when they put me on medication for it. It seems to working. I was on Lisinopril, but like I said before she changed it because she thought it might be contributing to my edema despite me telling her that these episodes of joint swelling, pain, and muscular pain have happened before and I wasn't on any ACE inhibitors at the time. I was 19 and in college. Now I'm on Microcardis or Misocardis or something like that. I've only been on it for two days so I don't fully remember the name. I just know it has the root for heart in it and starts with M. I hope you get your blood pressure and female issues straightened out and please keep in touch. I enjoy talking with you and having someone who truly understands what I'm going through.
Jay
 
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wendybird65 responded:
Anon_18407 I was just reading your post and I thought I wrote it. I was diagnosed with RA one yr ago I had those identical symptoms and still do.I changed rheumatologikst last month and this Dr actually says my test were negative for RA. Im baffled I see her again on Monday I am going to ask her to retest me and I am asking her that specific question how can I test positive then negative but have all the signs and symptoms of RA. Plus the other Dr. had me taking meds for the disease for a yr.I have these pea and marble sized firm nodules under my skin on my knucles,forearms and elbows that are also symptoms.My activities are almost void somedays especially if its cold or cold and damp I can barely move.I understand your need to scream help.When I get answers I will be sure to post them.
 
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Lainey_WebMD_Staff replied to wendybird65's response:
Hi Wendybird65,

I am sorry you are in pain and still no results. Have you looked into Seronegative RA or other possible medical conditions?
Check out the link and let me know if you are interested in more information.

Soft hugs,

Lainey
It's at the borders of pain and suffering that the men are separated from the boys. Emil Zatopek
 
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wendybird65 replied to Lainey_WebMD_Staff's response:
Thanks for the info Lainey I will look into that, I was told by the new Rheumatologist that I have 3 of the 11 symptoms of Systemic Lupus Eyrathematus(sle) well when I looked it up I have almost all the classic symptoms.But I have just as many signs of RA. I am going to check out the link right now. Thank you so much.
 
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Lainey_WebMD_Staff replied to wendybird65's response:
Hi Wendybird65,

We have a Lupus community and I have also heard that some people were told they had Lyme disease but it was (misdiagnosed) RA. Here are more links.

Lupus Community

Lyme Disease

A Patient Voice Community Great discussion you might be interested in.

Let me know if you need anything. (even just a vent)

Soft hugs,

Lainey
It's at the borders of pain and suffering that the men are separated from the boys. Emil Zatopek