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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.
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.
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.
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.
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.
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!
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
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
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
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

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