Newly Diagnosed Rheumatoid Arthritis Map
Lately, I’m getting more mail and messages from the newly diagnosed. Rheumatoid Arthritis is such a complicated diagnosis to handle. There is so much to figure out, I’ve often joked that we ought to get a degree and little letters after our name: RA.
Answering emails and messages is an enjoyable part of my day because I love hearing more of your voices and stories. Every day, I meet fascinating, compassionate, and buoyant warriors who melt my heart. And I often cry with the newly diagnosed with RA.
Of course, I can never write everything I want to say because there is never enough time. That’s actually why I started the website. I thought that it might save some time if I could write out a post and then be able to just give someone a link. Are you laughing out loud at this point? If you know me very well and how much time I spend working on the site, you are rolling on the floor – or at least rolling yo
ur eyes.
A list of newly diagnosed Rheumatoid Arthritis questions
Here’s my idea: a Newly Diagnosed RA page can help those don’t know what to ask or do or read first. I hope it can be like the You Are Here map when you walk into a new mall. Only much less fun.
This week, I’m working on my newly diagnosed page. What questions would you ask if you were newly diagnosed? What do you wish someone told you? I will use your comments as I finalize the page.
Are you newly diagnosed with Rheumatoid Arthritis?
If you are newly diagnosed with RA yourself, you might want to look over the RA 101: Basic Rheumatoid Arthritis Information pages that answer some basic RA questions from a patient’s viewpoint. Another good place to start is the Methotrexate and Rheumatoid Arthritis pages since this is the most prescribed RA treatment. If you are looking for a friend with RA, you might want to try our friendly RA Facebook group. If you want to read more, you can find every post in the category “Newly Diagnosed” here with this link.
Being diagnosed with Rheumatoid Arthritis is hard. There’s no real RA easy button, but two things that will help you most are information and companionship. My advice: Keep asking questions. Try not to become isolated: connect with others who understand what you are enduring. Take it one day at a time.
Recommended reading:
- Where Is the RA Help Button?
- What Is it Like to Have Rheumatoid Arthritis? Part 2: Why Don’t They Tell You?
- The Me Before Rheumatoid Arthritis
I for one would have liked being told what to expect as in Quality of Life issues that I encounter and have to wonder, is this RA related? I was told , “you have rheumatoid arthritis” was handed a pamphlet and told it may take 4 to 6 weeks for symptoms to improve and sent on my way. Ten years later, I am still questioning, is this RA related? My pamphlet only talked about my joints and morning stiffness with some fatigue. I never expected to lie on the couch freezing with a fever of 95.2? with every joint screaming. I never expected to have difficulty swallowing or talking with hoarseness……I wish I were told of the indepth details of the impact that RA has on my quality of life.
Cindy
good ideas, Cindy. Thanks, maybe “expectations” would be a good topic.
Is a lower body temperature common to RA? Mine normally runs at 96.5-96.8. I have to convince doctors that 98.6 is a fever for me, and 101 is a high-grade fever for me. The last time, I made my PCP look back through my entire record and pointed out several instances of the lower temp to convince him 99 was a fever.
I am also always freezing, especially my hands and feet, which I had just chalked up to Raynaud’s. Just makes me wonder if this isn’t more common… Thanks 🙂
May, From the many, many post I have read, RA and “lowgrade fever” seems to go hand in hand. My rheumatologist never discusses this with me. My Family practioner explained that the lowgrade temp such as my 95.2 is a sign that my body is in fact fighting something such as; inflammation due to my RA. So, after years of trying to figure this out, I finally got an answer. I do believe from reading the many post of RA’ers, it is a common symptom of Rheumatoid arthritis.
Well this is really helpful. I, too, have a sub-par temp – usually around 96 degrees. When I am at 99 I am running a real temp. I had no idea this was common with fellow RA’ers. Thanks.
Thanks Cindy. I too run low 95 to 96 point something. I was always wondering why it was so low.
Thank you for helping to put one more piece of the puzzle in place! It is such a relief to know I’m not alone.
I have wondered about the lower-than-usual (I don’t use normal for anything my body does) temperature myself. I am almost always below 97 unless I’m sick. If I go up to 99, I am unable to function. My PCP “gets it”, as long as I remind him of my ‘usual’ low. I have believed it to be related to RA for quite a while, seeing these posts just helps confirm it.
Thank you for all you share!
Angela
this is amazing kelly!! you are so unique! it helps a great deal if someone is there to guide them as they begin their battle with RA….i feel the initial phase is most confusing and exasperating….i remember having left completely lost after my diagnosis, which i still am sometimes :silly: …your post is nothing less than a blessing for our pals who have recently been diagnosed with RA!!
What is the thing that you think would be most important to know?
Kelly, the fact that RA causes such severe fatigue, the issue you have addressed in your previous posts…..doctors prescribe medicines, but invariably skip to mention what naturally tags along with RA, apart from acute pain of course! It is important for those figuring out life with RA to know that how important it is to conserve energy and constantly focus on nutrition. I know complications of RA are beyond us, but small efforts may just help us handle it better. The reason I say this, is because most of us tend to go back to regular hyper active life the moment we feel medicines are working and we start feeling better. It is hard to cut down on activities with never ending responsibilities, but it’s only for our own good that we need to take it easy.
I have made a lot of mistakes with RA and one of the biggest ones was that I totally went berserk with work during the time I experienced remission. And now the situation is such that even when my pain is under control I don’t have the energy to even step out of house! My mom always asked me to eat better and rest more…I wish I had paid more attention. But now I am :-))
I agree with Cindy. I was told basically the same thing– we’re putting you on methotrexate. It will take 4-6 weeks to see if it works. Come back in 4 weeks for blood work, 6 weeks for a check up. Bye,bye. So I was not prepared for how I felt the morning after taking the first oral dose of mtx. I was worse than I had ever been before. I could barely get out of bed much less go to work. I called my doctor’s office and he seemed to not be concerned at all. Finally, 2 days later and no improvement I called the after hours number and they called him at home. He gave me a steroid pack and said “you will feel great for a week but don’t get use to it”. That’s it. So, thankfully, things are some better now that I’m 4 weeks on the mtx. Feet are swollen and hurt constantly as well as hands and fingers but at least I can get out of the house and work. I am still adjusting to how drastically different my daily life is and the surprise of waking up each morning not knowing how my body is going to perform.
Sherron, Thanks. That’s helpful. By the way: 4 weeks? Sounds like you are still new to this. Anything else specific you would wish someone would tell you? I think it’s hard because you don’t even know what to ask since you can’t know what to expect…
Luckily I got a great Rhuematologist. That being said, I was extremely well informed about what my life was going to be like and still did not understand what I was in for with this rotten disease. I have a low tolerance for Docs who seem to spend 5 minutes with you and send you on your way with 500 pages of ‘informative materials’, however, in defense of SOME doctors, there are so many different ways RAers feel. In the beginning I had major flare ups, but in between those I felt ‘okay’. After the first year I started to develop the severe morning stiffness, and the severe fatigue that made walking from one room to the next feel like a marathon. Now at 2 1/2 years if I have one or two good days a week I am lucky. On the other hand, my sister, who has had RA for quite a few years (over 10), is not affected by weather changes, and does not have the daily symptoms that I do. She has MAJOR flare ups, and I have mostly minor inflammation and redness now. Her RA is also a part of a disease called CRST disease and she deals with things that I don’t. It is so frustrating because you are right about the question “Is this RA related?” I often wonder if I have something else but chalk it up to RA. The frustration continues when a medication that has worked for a while stops working. Then it is back to the drawing board. Yesterday was a GREAT day and now this morning I am miserable. Did I overdo it? Possibly. But I would not have missed a trip to the wild life zoo with my hubby so today would not be bad. Basically what I am trying to say I guess is that as frustrating and painful as this disease is sometimes really good doctors can’t tell you all of this because every person is affected differently. Don’t get too discouraged and continue to communicate through sites like this with others who have RA. Unless you can find a doc who HAS RA, they will never fully know what our days are like. If you don’t like your doctor, get a different one that you do like but even a specialist cannot predict what symptoms you will have. It does get frustrating but you also can help the people around you understand how you feel. I feel like I am now also an RA Warrior trying to help those around me understand what it is like to live with RA. Keep a positive outlook and know that there are others who DO understand and can help you.
Bless you and I am sorry you had to join us in the RA World, but we welcome you with open arms.
Thanks, Pamela. Some good thoughts there. I’m sure you will encourage someone with your words.
I can’t imagine the 500 pages thing. No doc has ever given me anything to read about RA. Or encouraged me to do so either.
Hey Kelly! I think your idea of linking people to a listing of local support groups in their general area would be really valuable. I know you are aware I am still fighting for a diagnosis, and the largest questions looming in my mind (other than what is treatment going to look like) is how am I going to navigate the real changes in my life … like what about my job? What about disability in the state where I live? What about medical leave? What about medical insurance? And since you can’t possibly know the answers for every area, maybe being able to direct new RA’ers to local resources would be a great pairing??? Your site is so full of great info … and the personal stories (onset, etc.) are so important because I think everyone can find someone they relate to there. It helps to know you are not alone.
Hey there KimbraLee! I agree with you – don’t go it alone & one day at a time since it’s overwhelming – Many of us are several years in and still have not figured out all of this stuff.
Kelly,
I have to hand it to you. This is a great idea.
I would have just one thing to say…it probably isn’t what people want to hear, but I wish someone would have told me. I’ve talked about it on my own site, but basically it is this:
Sometimes the disease does not get better. Sometimes it gets worse.
Of course, we all hope to get better. We should never give up that hope, but if we are told from the beginning that our lives may be changed for good, we might make different decisions…like maybe I wouldn’t have earned an MA thinking I would be back to work as soon as “the meds. kicked in.”
Can we say student loans?
– RA SB
It would have been very helpful to me to have a handout or resources that tell you how to deal with everyday life while owning RA. Maybe be directed to a website that gives common sense tips on how to make it through the day. Like new ways to put on your clothes while in pain, how to do routine things in new ways to conserve what strength and stamina we do have. I am still looking for such a website and am not having a lot of luck. Maybe we could start something like that!!!!
Jamie, I’ll bet you are expert on so many of these things you’ve figured out for yourself. If you want to start a list of tips or ideas, maybe we could post it here or on Facebook.
By the way, I saw this one today about how to clean safely. But, you know what? I can’t do most of the things they describe anyway. :razzmad: However, many can, so it may help them.
Hi Kelly. It is up to you as it is your site but I think it would be a good idea. It would help to new comers and us old-timers. Everyone finds ways to cope and new ideas are always great as we progress down the RA road.
I once read a tip about how to get out of the bathtub safely. I still think of it on those rare occasions that I get to take one. I could never figure out how to do it. Hhaha. Jamie, if you start a list of tips, we can get folks to add to it if needed & I’ll be glad to post it. I’m really tired, so I hope I’m making sense. 😮
I just read through those tips for spring cleaning!! I am hopeful that some of the RA warriors out there can do these.I don’t think I will be doing too much of their spring cleaning!!!
Great idea having this Kelly. When I was diagnosed I was scared to death of the meds, still am. Had no idea what to expect from my body. When I go in for my check ups I’m still asking questions a year later such as is this normal, I feel like this or that, is it because of RA? Every day is different. I had no idea of the impact it would have on me. I am just sort of figuring it out as I go along. Of course with this site I am finding more and more people like me and learning from everyone’s experience.
Kelly, I would be ROFLOLing, but it would hurt too much to roll on the floor, and then I wouldn’t be able to get up. I am LOLing though! 😀
I think a page for the newly diagnosed would be fabulous. I was just diagnosed four weeks ago. My rheumatologist gave me a prescription for plaquenil, told me it would take three to six months to work, and said he would see me again in two months. I was so frustrated because I wanted to know what else I could do to help myself along, such as nutrition. I ordered a huge number of books for amazon, which ended up just overwhelming me with information and different theories. I just wanted someone to tell me what to expect right now and what are good first steps to take for improving my health.
I ended up setting all the books to the side and deciding on my own to focus on one thing at a time. I bit the bullet and made an appointment with a nutritionist to improve my diet as a place to start, which makes me feel like I am being proactive. I have no idea what else I should be doing though.
Thank you for your wonderful blog!
Morgan, I know how you feel. I went thru a pile of books the first couple of years, too. There’s still a photo of a stack of books on the About page (I’m re-arranging that page soon.) There were times I just could not even look at those books again. It is truly a maze. Part of the problem is that since there is no cure, there is a ton of money to be made with “cure” claims – taking advantage of how desperate folks are.
As one of the newly diagnosed, I think a good explanation of remission would be good. Is it just that the pain has gone away, maybe the swelling’s down, but you’ll still feel the fatique, etc. or is it the miracle “you show no signs of RA” belief. Likely it’s different for everyone, but it would be good to have a better sense if the meds are working well enough. (I see my rheumy next week and will be asking him as well.)
Hi Diane. Thanks for the idea. Let me know what the rhuemy tells you. That would be interesting.
Last fall I did a 3 part series on Remission. You can click here to read it.
Thanks, this was very helpful. I thought I’d read most of your posts, but hadn’t come across this series.
I’m glad. Let me know how it goes. There are about 300 pages here – hard for me to keep track, too! 😎
He mentioned that the “traditional” definition deals with the number of swollen joints/ painful joints, but that the current movement (which he agrees with) is more about patient ability: can you do what you used to do before onset?
That is incredibly enlightened! I’ve been saying that for a couple of years, but I haven’t had a doctor agree with me yet. That is a good sign for you. 😎
I think the best thing to tell ANYONE with RA is the most important member of your treatment team is YOU. Be educated, ask questions if your not satisfied- ask more questions. You really need to participate in the decisions you make about what meds you take, your activity level, everything. I wish I would have known this 23 years ago when i was dx.
Noel,
Great advice. :yes:
The first thing I tell someone is: “I’m sorry.” Only one person said that ever about my diagnosis & it meant a lot.
But the 2nd thing is the same as you. I say: Read, learn, question, study… RA needs to be managed and faught & you have to learn how & build a team…
I was dx 3 weeks ago. My rheumy explained in detail the med options she recommended which were meloxicam and either sulfasalazine or methotrexate. I chose sulfasalazine as the side effects are expected to be less. My doc informed me that it could take 3 months to see if it’s working. She gave me a handout with some very basic RA info. She also told me that I would need to have blood drawn every 2 weeks for awhile, then every 3 months to keep an eye on my liver and kidneys. Next follow up appt in one month. Then she asked if I had any questions. My head was spinning but I had NO IDEA what questions to ask. Since that day, I have been reading your wonderful blog site (thank you for seeing the need and doing something about it, Kelly), along with other websites and books. Sometimes it is very overwhelming and discouraging to read too much. So far, I have had some symptoms almost every day but usually a couple days per week that are much more severe. Some days I feel almost “normal”. One of the things that is very disconcerting to me is not knowing from one day to the next how my body will feel and what I may or may not be able to do. Trying to take one day at a time, educate myself and those around me and trust in my God who knows my future and holds me gently in His hands.
Robin, 3 weeks? I’m sorry.
You are doing great by education yourself about RA. There’s so much to learn. Please ask whatever questions you need.
I agree with you that God is holding you. Trusting that will help you in this fight. Did you read this – especially the last paragraph.
This is a great page to have. I was diagnosed as palendromic a few weeks ago; my doctor hesitated to diagnose me as RA because the aches and pains were not usually on both sides at the same time. Now he has said that I have an agressive RA because it affects so many of my joints at once. I constantly come up with questions about what I can/cannot do, if a specific symptom is associated with the RA or the mtx or the plaquenil or the prednisone…and I never know what sources to trust. My rheumy told me that a great resource for info is at arthritis.org, but it’s not easy to find what you’re looking for.
I do have a question, though. I always thought that RA was simply an arthritis. I now know that is such an incorrect statement. Of course my radar is now up and I notice hearing about it much more. I heard a man say his sister died due to her RA and I recently read something about someone’s father being “taken by RA”. My rheumy didn’t say anything of this sort, but is/can this be a terminal disease? Please pardon my ignorance on this subject. I just don’t know where else to go to find this info.
Dear Jen, Don’t be afraid to ask anything! If you have been reading this page, then you know it’s a lot more than “arthritis” – Patients are constantly asking how we can change the name of the disease. There are some posts about mortality. We do have a higher mortality rate to tell the truth. Now don’t let that scare you. You can fight this & there is hope that with newer medicine & better care, that mortality rate will go down. There are many places on this blog that things relating to living longer & preserving your health are discussed. You can start with RA 101 or use the search box or the tags list. Let me know if you need more help. Here are a couple that are under the tag “death” click here. I know how you must feel – I hate answering this question.
Thanks Kelly. I appreciate the info. I have found so much helpful information on this site in just the one hour that I have been looking around.
Jen
I was just told that I have RA based (as far as I can tell) on a blood test that reported that my “RA Latex Turbid.” result is 20.3H. The report lists the limits to be 0.0-13.9. I can see that I am well above the limit. I am desperately seeking more information on what this means. I can find no other indication that I have RA. I saw a rheumatologist last month and was diagnosed as having fibromyalgia. This doctor based his diagnosis on my reports of symptoms and finding a lot of trigger points on my body. He felt my finger joints and told me that I am not arthritic. I am now experiencing a lot of burning, stinging pain in my feet. My family doctor ordered tests which indicated I do not have nerve problems (peripheral neuropathy) and I was given an MRI yesterday on my lumbar region of my spine. I have not received results of the MRI yet. My biggest concern is the diagnosis of RA. What does the Latex Turbid number mean? Any help would be so greatly appreciated. I was also told that I am pre-diabetic with a glucose level of 105. I feel that I can get this under control with a better diet and more exercise. I also should mention that I have been a semi-vegetarian (I do eat fish) for 4 years to reduce inflammation in my body.
Carol, I’m going to refer you to another page w/ more info about diagnosis & some more links – click here. I think that might help you some. That blood test could mean RA, and your symptoms sound like RA, but it’s not always that clear at first. Do you know if you have had an anti-CCP blood test? It is a good idea to get copies of all your tests & keep them yourself. By the way, feeling your finger joints is not a way to tell that you don’t have RA. When you get time, you might want to watch my video – click here – where I mention a similar situation.
Thanks for your timely reply, Kelly. The ironic part of my situation is that since I turned 60 this year and have the new diagnosis of Fibromyalgia, I requested a complete blood test this time when I went in to get my annual cholesterol check so that I could get a new prescription for my cholesterol meds. If I had not requested this expanded test, I would not have any of this new information. To complicate matters, my family doctor is retiring at the end of this month-this week. My rheumatologist did not do any blood tests,which I think is a bit strange. I do have a copy of my blood test results from my family doc:
C-Reactive Protein, Quant is 1.4 mg/L
Antistreptolysin O Ab is 58.7 IU/mL
Sedimentation Rate- Westergren is 6
These three results are all within the recommended limits.
I do not see the anti-CCP test that you asked about listed.
The family doc put me on pain meds which have eliminated the burning, stinging pain in my feet, allowing me to get to sleep. I see this doc again on Tuesday. It seems to appear that the problem with my feet is due to a “pinched nerve” in my sciatic. I am trying to read and study all the information that I can but now I am very confused! I am going to ask my family doc if I should make an appointment to see the rheumatologist. This doctor had very good reviews on line. It took me over 4 months to get in to see him.
There is a wealth of information on your site of which I am very grateful! I will keep reading and learning.
Keep reading thru the section on tests here & the links. You will probably get that (anti-ccp)test. RA is not diagnosed by blood results alone. But that is a more reliable one for confirming RA. It’s not rare to have RA & all normal test results though. Good luck w/ the new doc.
I have just been diagnosed with RA and start Methotrexate on Monday, been on steroids for a month, at least that got rid of the pain. I am really scared of whats happening and how much longer I will be able to work.
Hi I am in Seminole County and am so frustrated with my rheumatologist-would love to find a female md or a better male m.d.covered by bcbs. Does any one have any suggestions?? Thx!
Not sure which Sem. Cty. Norene, but if it’s Florida, send me an email if you’d like to be added to our local email list. We sometimes have a lunch or coffee event in the area.
Hi! I am sorry to ask again, what has probably been asked a hundred times before, but…. I have been diagnosed with RAat age 26. I am scared, I imagine the worst case scenario at this point, and after doing some research, I am also angry at my doctor for not figuring out what my problem was earlier than she did.
I have been dealing, with what I now realize is RA for a lil over two years, and even though it was not the typical symptoms when you add them all up it was clearly RA; yet now diagnosis was ever made.
I am wondering, after two years, is it too late to reverse any damage already done?
is my age going to decrease my overall prognosis?
am i gonna die too young to see my grandchildren? ( thank goodness bearing children is out of my to do list, at this point)!
is the internet the best place to look for information? it all seems so grave.
I need help, as you can rea and would greately appreciate any advices.
thanks =)
Thanks for the newly dx subject matter! I have been having symptoms for years but was just finally tested for RA and was positive. The unfortunate part is I am the full time caretaker for my 90 year old grandfather and have no insurance! I am part cherokee so I can get free healthcare..the catch is I have to drive 4 1/2 hours to get it and cant see a rheumatologist for 6 months!!! After my first trip for medical care driving 4 1/2 hours 2 days in a row I ran high fever and couldnt hardly move without pain for the next week! I am taking Mobic, Prednisone and Hydrocodone daily to try and keep the inflammation at bay til I can see the Rheumy in Oct! I see my only option as being disability..but then I can no longer take care of my grandfather! My pain is daily..some worse than others..but it never goes away….Night time is the worst!!!! I also have experienced joints in my knuckles locking up. And most days cannot even lift a jug of milk! Then of course there is the family issues…no one understands!!!!! They cant see it there fore it must not exist right?? NO, I am not crazy!! This disease is NOT pleasant..to say the least! Thats my newly dx experience!
Kathy–
Thanks so much for being our “Warrior Princess”! Reading the entries on the site has brought tears to my eyes today.
I’m NOT “newly-diagnosed”, I’m “pre-diagnosed.” A month ago my primary care MD referred me to a rheumatologist, based on symptoms and slightly elevated RF. But I won’t be able to see the specialist for 3 months.
Based on my symptoms, I firmly believe I have RA. I’ve asked my primary care Dr. to order an anti-CCP test. I’m taking 800-2800 mg.of ibuprofen per day. I wear a highly padded bicycle glove on my right hand when using a computer mouse. (For years, I’ve worn them on both hands for driving or garden work.)
Any suggestions for dealing with stiffness/pain, (especially in the early AM), BEFORE the official diagnosis is made?
Thanks.
I am newly diagnosed with RA. I also have COPD. I want to quit smoking, and have googled everything I possibly can, and still have not found a definite answer whether I can use the patch of not. Please help.
You need a pulmonologist who knows about rheumatoid disease to help you navigate this. The smoking is related to both diagnoses obviously, and you could possibly improve with quitting. Also, the “COPD” might be part of the RD.