Where Is the RA Help Button?
What, There’s No Easy Button?
Once a blogger I know mentioned how easy it would be to write a Rheumatoid Arthritis help blog. “Just write the tips you learned that make it easy to live with RA.” I just said, “Thanks.”
Of course, he did not realize that living with RA is difficult. And that there is not something we can do to make it easy. It’s too exasperating to explain sometimes. That’s why RA’ers are so grateful to find one another – it’s like finding a friend who already knows you.
Rheumatoid Arthritis help wanted
Sometimes we joke about being a professional patient because managing RA is like a part time job. It gets a little easier after a few years when you get used to it. Here are 20 tips I’ve found that I need to know about the management of Rheumatoid Arthritis. I can promise you it won’t make it easy.
There’s something else that’s really important – trying to find a good doctor. Here are 21 things you need to know. But it might not make finding a good RA specialist easy.
Of course, you’ll want to get a peek at all your doctors’ notes before you pass them on to the new RA specialist. It’s best you find out what is in there before the new doctor does. Sometimes, there is surprising news: one friend of mine found some bizarre facts about herself that she would never have known. She’d never heard that she had five children!
When the big day comes, you’ll want to be prepared to meet the new Rheumatoid Arthritis specialist. There are 11 things you might want to bring with you.
When you have RA, help is everywhere
For those who live with RA, help is everywhere. Use the word Rheumatoid Arthritis a couple of times in an email or a Google search, and the ads will begin to pop up like crabgrass with all kinds of tips to live easy with RA. Here’s the dish on which tips in the Arthritis Foundation book are good and which are less… easy.
Speaking of easy RA help, good luck finding the RA diet cure. It’s not here on my Rheumatoid Arthritis diet tips post! That’s for sure.
Life is hard enough with RA. Help for RA sleep problems would be nice. There are so many great suggestions from readers on that RA sleep series; you might fall asleep reading them.
And it will be good that you got some rest. Then, maybe you’ll begin one of those many hard projects which have been piling up due to RA. I have a couple of ideas about how to get started…
Recommended reading:
- E-patients’ Role: Do Doctors Hate Blogs?
- Ultrasounds for Rheumatoid Arthritis, Part 1
- Five Ways to Spread Rheumatoid Arthritis Awareness
If there’s one thing that isn’t easy, it’s coping with RA.
Also, blog writing is easy- for about a week. Then it gets harder and harder as the motivation goes!
ur blog really serves as a help for ra sufferers. atleat I found it useful.It gives an encouraging feeling that its not only me who is suffering n also that that everybody have such probs like to write n type. i mean it got me to know that it actually happens.bcos when i say to my doc anything,he a kind of deny with smile, n when i m afraid he just says its nothing.i feel my hands r a little disfigured he says baby they r normal.he is right at his place as he never wants to dishearten me but bt i think smtimes atleast he shud understand the things i m noticing….huhhhhh well,as always i do…..i reached another topic.
really kelly.i must say u r hhelping us.
just wanted to ask…..r the meds to b taken fr lifetime?
i mean i m 17 only..10 years hv already passed ……i mean the whole life wid meds? i hate to swallow pillss!!!!
Rachel,
Until there is a better answer (cure), I think we will have to take medicine to treat RA for the rest of our lives. Maybe this will help a little: I began to be treated for another disease when I was a teenager like you. After a couple of years, I was just too tired of medicine. Without treatment, I became very sick. This is what I learned: I was looking at it the wrong way. Instead I am now very grateful that there is medicine to treat my disease(s) because without the medicine, I’d be completely disabled or dead, depending on which disease we are discussing.
I know that it’s hard. I hope that it helps some to know there are so many of us in this together. Take care. :heart:
It helps greatly that you and others are out there…
Thanks for sharing your insights and experience Kelly!
It sure hasn’t been easy, but I have actually been in remission – without drugs – for almost 15 years. I can only pray that it will stay this way. I’ve done everything I possibly can to get well, and it feels like it’s MORE than a full time job at times, but I so grateful that my RA is not active now that I’d gladly do anything.
This winter has been tougher than most, even though I don’t have active inflammation in my joints I have constant inflammation and pain in muscles and tissue, but I’m still hanging in there, and I’ve been keeping my chronic pain support blog going with new posts every day on how to cope with living with pain on a daily basis. At least that feels meaningful 🙂
Dear Anna,
I’m not sure I like remission where you still have pain. I’ve never had a minute without “flare” in 4 years, but when I get “remission” someday, I imagine it in my mind without pain. I do hope there is no damage occuring for you.
That is interesting about your pain group. I have wondered sometimes about how it would be different for me to work on this site if I were no longer suffering as I do now. Would I do the same things? I have found that as folks get treatment & if they make progress, I don’t hear from them for a while – usually until they are in flare. How is it for you?
Of course it’s meaningful! :rainbow:
All the newly diagnosed people that I run across I refer to your blog. I always tell them to allow plenty of time to read thru your posts. I remember when I first found you I spent HOURS reading at every topic. And, still so much to read!! No “easy” button here! LOL!
Thank you, Krista. Someone really did say that to me. I’m working hard to make things at least “easy to find” here since there is so much to know. Maybe another menu??
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Can I paint a diagonal black line through the “RA Easy” button in the picture? “RA Easy” is an oxymoron! Wouldn’t it be nice if we could live like the people in those RA medication commercials “after” they take whatever is advertised?
I’m very thankful for the great strides being made in RA medications, but those new biologics commercials are over-the-top misleading. This frustrates me immensely, because those commercials are the public face of RA today. Where else does the general public (which includes our families, coworkers, and friends) hear anything about RA? Unless they have reason to seek out more information on their own. And why would anyone do that, when the commercials make it sound like this drug makes everything okay? No wonder people in our lives don’t understand.
When I was first diagnosed with RA, I went to what I thought were reliable top medical information websites to find out more about RA. I was VERY surprised to find that the information on some of the top, supposedly highly credible websites painted very different pictures of what RA is and how it can (or can’t) affect the body and a person’s daily life.
Like those simplistic misleading TV commercials, some top medical information websites minimize or even completely ignore true-life consequences of having RA. In my search for the truth and for validation of what I was experiencing, I was relieved to find other top sites that were more accurate (like Johns Hopkins and some other major hospital sites).
But why is the public picture of RA, especially in commercials and some websites, so inaccurate and misleading? Okay, commercials are made to present the medications in the best light possible, especially since they are competing for treatment plans that can cost over $1,000 a month. But what about those websites? Wait a minute… There’s ads for those same medications in the margins of those web pages! Or, sometimes, the sponsor is hidden and buried deep in the “About this website” pages.
It is wonderful to know we can find the truth about RA, even if we have to search it out. I am so very thankful for this RA Warrior blog site, because the information presented here is thoroughly researched and accurate. Equally as important, Kelly and the members of this site understand and support each other. Like Kelly said in today’s blog, “That’s why RA’ers are so grateful to find one another – it’s like finding a friend who already knows you.” Thank you, Kelly, this website is a huge blessing to everyone who comes here.
Wouldn’t it be nice if “RA Easy” was true? If it was, maybe I could go to my rheumatologist or pharmacist, saunter up to the bar – oops, I meant to say – counter and order an “RA Light.” Or we could all have a big party with a keg of “RA Light.” Now THAT would make a nice RA medication commercial! If only it were true…
Caysea,
I’m thankful for the medicines they bring to us, too. The Biologics are the most expensive prescriptions so their ads are obviously highly sought. As you say, everywhere we turn they are there. We see them on every site we visit – even the site which had stolen my entire website minus the copyright statements: Zikkir. (As they emailed me, “It’s been removed” now.)
I think that the drug companies have a responsibility to portray the disease more accurately. If the AF does not do it and the pharma companies don’t do it, it is no wonder that the public is confused about RA.
We will keep fighting. :soldier:
Kelly you are wonderful!
I was diagnosed a year ago. For eight months I took all the medicine the doctor prescribed. Every month I would go to the doctor, get my blood checked, get x-rays of different body parts, etc. He kept adding medicine, said I had fibromyalgia along with the RA. I was hurting even more with the medicine. On my last visit, he prescribed a pill that made me hurt so badly that I was in bed for several days. I stopped taking everything. I’ve been off all meds for several months now. I hurt so much that I just want to crawl in a closet and die. I’m afraid to go to another doctor and start the whole medicine thing again. I feel like I’m whinning all the time if I actually tell my husband how much I hurt. I know he is going to get tired of me complaining all the time so I try to just deal with it without saying much. I just found your blog and I’m trying to read everything. I know I need to find another doctor and start getting treated again so I’ll read your advise on finding a RA Specialist next. Thank you.
My heart goes out to you Becky. Finding a doctor who will listen is hard. Trying to get family to understand is hard. RA is all hard. Let me know if I can help you find anything.
I was diagnosed with RA, in late March of this year. So, I am still a newcomer to dealing with it. I am being treated with Methotrexate and I have a question: Can this drug or RA cause skin discoloration?
I have a huge place on my lower, right leg that looks to be getting darker. I have an entire right jaw visibly darkened by a brown patch of skin. Another is starting on the left side of my face.
I realize, at 50, age spots can start. This is not an age spot — way too big. If it’s sun damage, it is odd that I never saw it prior to my RA diagnosis & the Methotrexate. It doesn’t hurt or itch. It isn’t flaky. It literally looks like blotches of a sun tan!
Has anybody had this problem, or even heard of it????
Julie, I don’t know about that. I’ll look around. I did have RA rashes that were really odd but this is a new one on me. Did you ask a doctor yet? I’d get a dermatologist appt.
At my second visit to a rheumatologist she kept telling me that I didn’t have RA and didn’t need Remicade. We argued about it as I’d been diagnosed three years prior and had been on Remicade for 2 1\2 years. I discovered as I was leaving it was because she had someone else’s chart. And it was a chart for a male patient.
I had to go for the Rolodex with that rheumy ’cause after that she was fired.
Mary, that ranks right up there with the guy who told me his MRI report noted his hystorectomy! Thanks for sharing 😀 I hope you found a good rheum doc eventually?
Since receiving the Rheumatoid Arthritis diagnosis three weeks ago, this blog has been my RA help button. I’ve had a hugely steep learning curve from wondering why I was so crashingly tired and couldn’t turn the kitchen tap to testing positive for antiCCP. I haven’t even seen a rheumatologist yet. So, after some fierce Google sessions, here I am, and very grateful that you have taken the time and energy to create this resouce for RA.
Irene, I’m sorry about your diagnosis, but glad you found us. Did you go thru the RA Mall Map for the newly diagnosed? There are lots of links there to more info too. Let me know if I can help you find something.
Kelly, yes I did explore the RA Mall Map – very useful! Thanks so much for your offer of help.
My daughter has been diagnosed with RA and her doctors do not seem to listen to her. She seems to be sinking further and further in depression with no one taking her pain seriously except me. I cannot do anything but listen. What else is there? She has changed her diet. She has a “green” house. She is beginning to isolate herself from people.
I’m so glad she has you to listen Sherry. Some don’t have anyone who believes them so you are already helping her. Maybe together you can find a doctor who will listen. It is hard, I know. I’m sorry she has to go through this.
My daughter has been in pain for a long time. She had unusual pains in her joints as a child. We took her to doctor after doctor. She had unusual fevers. Approximately two years ago she was diagnosed with moderate to severe RA yet the doctors do not seem to acknowledge the pain she is in. She has changed to an all natural diet. She uses natural things like vinegar to clean with. She even quit uses regular deodorant. She doesn’t sleep because of the pain. She cannot live like a normal twenty-three year old and she feels like a failure as a mother. She is sinking further and further into depression. What can I do to help her besides listen?
Sherry, I’m so glad you are looking for answers & help for her. I don’t think that her hygiene habits or diet gave her RA and this is not anything you did either. I talk w/moms of babies too & what could they have done to cause this? Nothing at all.
What can you do? There are some links here on this post to look at. Some ideas: Help her get to the doctor if she needs help to find a good one or pay for it. Help her to tell the doctors about her symptoms – help her make them listen. Sometimes you can take photos of symptoms to bring or make a journal of symptoms. Help to to find a friend or counselor so she has others to talk to also. Help her to talk about her fears & to be prepared to take whatever treatment she needs to – it can be scary.
Gosh, how many of us wish we had someone like you – don’t underestimate what you are already doing! Standing by her means so much.
I was wondering if there is any household help for RA patients? My daughter is on SSI and has alot of trouble keeping up. She has fallen in the shower a few times now.
“RA help” button make it easy? I don’t know about easy, but I do know the diagnoses though scary eased my mind. I now at least know what I have fight even if I can’t see it. I now know I didn’t just suddenly get lazy, it’s just RA fatigue that prevented me from having the energy to do all the things I use to do. I know now that the pain I was feeling, though my doctor couldn’t see anything on exam, wasn’t just “in my head”. I know now that just because I am over weight and didn’t exercise like I should, it didn’t account for the pain I was actually feeling. I know now that though my purse may be heavy and aggravating my sore shoulders, it wasn’t caused my purse tearing some muscle in my arm. I also know now, that you can’t really believe everything you read about RA on medical websites or see on TV. I also know now that though the RA won’t go away, it does make it easier to have sites like this where you have people that understand what you are going through. RA is a very bad disease that doesn’t fight fair, but it would be unbearable without an RA family to share it with.
Thank you Kelly! I am new to the website and appreciate all the information and truth. I am a RN who has worked in the health care field for over 20 years and have never been so discouraged in my life. I have had symptoms of RA or autoimmune joint disease for over 3 years. I have completely normal lab counts and feel like this discredits my symptoms. In addition to all over joint pain, I also have terrible pain and stiffness in my entire spine. Every MD I have seen tells me that RA doesn’t affect the spine and that my back pain is related to either DDD or something else. I have had a herniated disc at L4 and have developed a mild scoliosis and they also “incidentally” found Schmorl’s nodes from T10-T12 which “normally” don’t cause pain. I did see a Spine Specialist who handed me a paper entitled ” Juvenille Discogenic Disease” which has no “magic cure.” I find it hard to believe that I went from a “normal” person with no pain to a person with pain in every joint of my body in addition to constant back pain in a 3 year time span and still hear that is is likely “wear and tear” arthritis. As a nurse, I know that a person doesn’t suddently develop this type of arthritis. My Rheumatologist finally started me on Methotrexate last week after scratching her head as to the cause of my severe pain and agreed with me that it couldn’t hurt to try it. I also developed hard white lumps and linear white lines on my DIP joints of my fingers and toes when this started and no one can explain what they are. They apparently are not Herberdens or Bouchards nodes (not sure if I spelled that right)? I am still in the process of trying to get people to understand. I’m tired of people calling my Husband and asking him if they have “figured out” what’s wrong with me yet? I am on short term disability again for the 2nd time in 2 years and if something doesn’t improve, doubt I will ever work again. I have never felt more depressed in my whole life and feel like I am completely alone. Even my Sister who also has seronegative RA tells me to “get tough” and that she too has pain but goes to work. How can anyone understand when my own Sister who has it doesn’t? Why do I have to explain that her pain is likely much different than mine? Who wants to be 41 years old and facing the rest of their life like a prisoner in their own body? I appreciate having a place to turn by reading your website. Lisa.
Dear Lisa,
Thank you for sharing. I’m glad you found us. Your comment tells the story of so many of us – so first of all – while there might not be someone close to you who gets it right now, you are NOT alone.
I’m glad you have a rheum doctor who is willing to treat you and hopefully the mtx will give improvement to your symptoms. That’s the most important thing.
Your logic is correct about wear&tear arthritis versus symptoms Rheumatoid disease. There are so many illogical things that are said to rheum patients – I think it may be rooted in not listening carefully to patients’ descriptions of symptoms.
Your sister may have a diagnosis of RA, but as you know, that doesn’t mean she has the symptoms you have. There is a wide range from mild (people who still go mountain climbing etc) to moderate to severe disease – that goes for symptom range as well as disease activity level. Some have all joints affected (full-blown) and some don’t. Some have a remitting pattern, with flares, and some just have 24-7-365 Rheumatoid disease. Just as it’s hard for those who don’t have it to understand, it seems very hard for those with mild or remitting disease to understand what it’s like for others with a more severe situation. There are several articles here written to help people understand or addressing the issues of mild v. severe disease. I’ll see if I can get a link to post here for you.
https://www.rawarrior.com/severe-rheumatoid-arthritis-versus-mild-rheumatoid-arthritis/
https://www.rawarrior.com/category/information-to-understand-rheumatoid-arthritis/
Wow, thanks for your getting back to me Kelly! This is the first time I’ve reached out to anyone on the web and wish I would have done it sooner! I am struggling with major depression and isolation since this happened to me and have sat outside crying, looking up in the sky and begging God to please give me some kind of an answer. I don’t know how I keep making it day after day and am putting all of my faith in the Methotrexate. I can’t tell you what kind of a relief it is to finally have someone to talk to who understands. Thank you so much for the information and I hope we can chat again sometime! Lisa from Minnesota
I have recently found the pain harder to take and wonder if anyone has tips around pain relief ? My knees throb so much sleep is impossible even withy sleeping pills and anti inflammatories as well as methotrexate and biologics! Well at least I can read your blog in the middle of the night !
I am not even sure at this point that I have RA, but… in May of 2016, I thought I had Lyme disease. I asked my ARNP to check for that. When I next went to her office. She told me she had good news that I didn’t have Lyme, but I did have RA. She didn’t mention doing anything about it and I being naive in the ways of RA didn’t ask what I should do next.
Sometime during this time, I think it might have been Jan 2015, I had a strange thing happen to my right hand. I woke up one morning and I could not even use it. My sister loaned me a brace to immobilize it, but the pain was excruciating. I could barely sleep for the next 2 nights, it hurt so bad. I didn’t have the money to go to the ARNP and I figured she would not do anything any way. After 3 days it went away. It happened about 2 weeks later to my left hand. Then I knew I had not hurt my hand before, because that is what I thought. A month or so later it happened again to my right hand. I went to the ARNP then and she told me she didn’t know what was causing it. Put ice and alternating heat on it and come in if it happens again!
I don’t remember how long it was until I had pain again, I do know that in Nov 2015, I had severe pain in the middle of my right foot and what felt like a lump on the bottom of my foot. I went to the nice ARNP again who had no idea what could be causing it. I could barely drive due to the severe burning pain. The pain went away and then would come back. In April my right ankle was swollen. I am not lying when I say that my ankle has been swollen every day since the middle of April. I went to my new PCP and he told me I had osteoarthritis and gave me a prescription for meloxicam. I took it, but didn’t see an improvement. I just carried on with my usual activities, living with the pain every day. Last week, I decided I could no longer stand the pain, so I went back. I told him I am practically an invalid. Every step I take is painful. I sleep 12 hours a day and I have a part time job that I suffer through. He did blood work. I was called and told my Rheumatoid factor was 219 and that they are referring me to a rheumatologist. I called my old PCPs office today and asked what my rheumatoid factor was on my last blood work and was told it was 205. That really made me mad, because I was never told that and it was never suggested that I see a rheumatologist. So, I am waiting impatiently to see the rheu doc and will see what he has to say. That is my story and I’m sticking to it! Sorry to whine, but I have about reached the end of my rope. I feel like I have lost the last year and a half of my life. At my age, one can’t afford to lose any time!
Hi Kelly,
I thought that was interesting to say that when people are in ‘remission’ you don’t hear from them for a while…
I’m never in remission but what can I keep saying I ask myself. I do though have varying levels of despair, and many times I’m so internalised that I can’t reach out to anyone or relate to anything.
I am having a despairing time, when I’m awake which isn’t very often.
I wish you well Tess from UK ??