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RA’s Secret Symptom

RA’s Secret Symptom

Rheumatoid disease (arthritis) has a secret symptom. It’s one that’s never mentioned by doctors or in medical texts in books or on the Internet, but it ought to be. In fact, I think doctors should be compelled to talk about it with their patients. It should be listed right up there along with pain, fatigue, and malaise. It should be right there, right out in the open.

It’s fear–and everyone who has RD copes with it almost daily. We do it alone and we do it without support.

The secret symptom of RD: fear

Fear of pain

There are a lot of things to fear when you’ve been diagnosed with RD. Fear of pain tops the list. Once you’ve experienced your personal version of an eight on the ubiquitous doctor’s office pain scale (zero being no pain, and 10 being the worst pain you’ve ever felt), you can’t help but dread the thought of ever hitting that agonizing, excruciating level again. And surpassing it? OMG. Each new flare ratchets up the fear again. But no one mentions it. Not you, not your doctor, not your friends or relatives.

Fear of disability

Then there’s the fear of disability, both the current version and the disability you might face in the amorphous but oncoming future. RD pain can make us limp and gimp. We sometimes need to use a cane, or crutches, or a wheelchair or wear splints or braces. These devices are just useful tools, like sunglasses and shoes. They make living and getting around easier for us and allow us to live as normally as possible. But sadly, in today’s world, they come with a stigma. Somehow, people with disabilities are “other.” They’re seen as sick, as less than equal, even as contagious. It’s cruel and unreasonable and makes life much harder for those who have to bear it.

Disability can make daily living difficult. Sometimes it’s hard to do simple things, like twist a lid off a jar or get dressed by ourselves. If RD attacks our temporomandibular joint–the joint that hinges the jaw to the skull–we might have a hard time opening our mouths to eat or even to speak. Disability like that can make us miss work, cancel outings with friends, and even just prevent us from getting out of the house for a while. Is there any wonder that disability–large or small–makes us afraid?

Fear of failing others

And if that’s not enough, we also fear of failing others because of the pain and disability our RD causes. If we’re in a relationship, or married, we might not be able to do our half of the daily household chores, or maybe we can’t manage the yard work. Pain or disability–or both–might interfere with intimacy when the lights go out at night. As parents, we might not be able to play with our kids like we think we should. We might need help with them that other young moms or dads don’t need. And as employees, pain and disability might interfere with our work. We might not be able to do the tasks we’ve been hired to do, or be as punctual as we should be, or even make it to work every day. These things–and many more–make up the fear that RD patients experience along with pain, disability, and fatigue. It’s the secret symptom, and it can be devastating.

How to combat the symptom of fear

The fear-symptom is real, and it’s perfectly normal. Who wouldn’t be afraid, faced with the challenges the average person with rheumatoid disease faces every day? But fear can be controlled. Remember that the fear of something is usually far worse than the thing itself. The way to beat it is to live one day at a time. Don’t hide from the future, but don’t dwell on it. It hasn’t happened yet.

Be honest about limitations

Instead, be open and honest with yourself and others about your limitations–and about everything you can do, too, because there’s far more of it. Learn everything you can about your RD and be assertive about your medical treatment.

Try to live positively

Live positively by treating yourself well, eating healthy, nutritious foods and exercising your body to keep it strong. Forgive yourself when you fall short. Failure is a necessary stepping stone to success, after all.

Tapping into inner courage

Having RD can be scary. It’s a real challenge, but you have all the strength and courage you need, right there, ready to tap into. Remember to smile, laugh, enjoy the beauty of the world around you and be open to the small gifts it has to offer each and every day. Surprise yourself.

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”

— ELEANOR ROOSEVELT, 1884-1962

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • BarbaraA
    2 days ago

    Please help me I was wondering if RA can cause sore throat and some pain in swallowing. I have been to my PCP twice and there is no infection but two days before I went to see her I had a little white spots anyway she did some tests which came back negative. Now she is doing blood work for mono and I know it will come back negative. Is there a chance my voice is hoarse also is there a chance it could be my RA

  • Lawrence 'rick' Phillips moderator
    2 days ago

    Barbra, I looked and I did not find any specific papers on the issue you describe. I did find one article about throat involvement and RA. However, I do not believe it addresses what you describe. I am sorry you are dealing with this and I hope if you reach out your rheumatologist will be able to shed more light on the situation.

    Here is the article I found.

    https://www.hindawi.com/journals/ad/2013/103081/

    rick – moderator.

  • wontgiveup
    2 weeks ago

    Thank You I enjoyed reading your article. I suffer from fatigue especially at work. When I feel I fall short of being able to complete a job in a timely manner. I get the job completed but at a slower pace then my co-workers.

  • lindar1207
    2 months ago

    Fear has been my biggest problem. December will be 2years ago that I left my last job. As I was no longer dependable at work, never knew when I was going to be able to go to work. I applied for disability once I was approved fear triggered depression, as I now knew life as I once lived was no longer in store for me. My normal life style is my new norm for me and I’m learning to accept the new norm . Very scary with RD we have to be open and accepting of changes.

  • stacy1992
    3 months ago

    Thank you so much for this posting.I am always afraid of not being reliable at work or not being able to do the job.missing work..also fear my new medication won’t work.I know when I project it’s always negative so I try not to but I have had flairs all summer and some days I just don’t have it in me to be grateful. On a happy note so glad I found this group.I felt so alone.thanks

  • jojo4ever
    4 months ago

    I am sorry I also am very fearful of how far this will deform me and the use I cry a lot right now every tine I hurt something I am afraid

  • jojo4ever
    4 months ago

    I have rd I started having problems as a child with really bad growing pains that were dismissed by doctors, I also had migraines and really bad stomach issues all which were chalked up to be growing pains, regular headaches or mental issues and nervous stomach and prescribed over the counter antacids to control throwing up all the time. I have not talked to my doctor about my childhood and was only diagnosed with rd about 5 years ago but also suffered problems in my hands as well in my 20,s all dismissed as other issues I now know that I had rd and my joints are really bad now. I am loosing my right hand my two right fingers pinky and ring finger are disfigured and will not straighten out now I was drilling something in my shed and when I woke up my two fingers were so huge that I could not move at all and I could not touch them what so ever the pain was unbearable I called the doctor they put me on steroids three times to no help really going back soon. I cannot write very well now pick things up or open anything sad to say my mother who is 70 with rd can still open my jars. I am going through a lot of depression and crying any time I hurt my hands at all because they won’t go back to normal any more once I hurt them the damage is done I really did not realize how bad rd really is. I cut my left ring finger at Christmas to the bone and ended up with a bone infection because the cut now that finger does not work right and getting nogles on all my fingers which are so painful I can’t stand it. I also have other issues like not healing very well, I get sick a lot, can’t sleep or sleep to much, can’t touch my feet in the mornings or hardly get out of bed without taking pain medication and then lay there for over an hour waiting for them to kick in, terrible stomach issues where I can’t eat at all down to 125 pounds as they test me for everything under the sun to know reason for the stomach issues yet anyway, stifffness is an understatement, I never sit do to it hurts so bad to get back up I just try not to sit at all, I also have fibromyalgia, degenerate back desease, scoliosis, some spinal arthritis, and other stuff. I guess what I am wondering is this all associated with the rd or do I really have other problems on there own. I study fibromyalgia but not so much the rd now I regret this because I can no longer work never realized I could hurt my joints so easy and loose so much function so quick. I do not test positive in my blood work my mom either only in xrays I find that weird also. If any one has any advice for me I would greatly appreciate it. I have filed for disability but they stated because my education and my management skills I should be able to find a job that’s was exactly what I was turned down for but now have a court date thank god I just need help figuring this out and what to look for and what my limits are and what else I need to know I don’t get much time with my ra doctor plus wanted to see what helps others thank you joy p.s sorry so much info in my text

  • Lawrence 'rick' Phillips moderator
    4 months ago

    JoJo,

    I am sorry you having such awful difficultly. It must be very frightening.

    I think most members here will agree that we have cried with and because of RA as well. I do not knwo if you are seeing a rheumatologist, but if not do find a way to get to one. A quality rheumatologist can make a big difference for the quality of our health.

    You did not mention if you use a Biologic medication but one of the many might be effective for you. I hope you will check in with your rheumatologist and please let us knwo how you are getting along.

    Our worst fear is often realized when we feel that others do not understand what we are going through. At this site you should not fear that. We all at some level or another understand how you feel.

  • kkharrod
    5 months ago

    Do physicians discuss symptoms other than pain, swelling, and mobility, symptoms like fatigue, malaise, and brain fog? I am asked to rate my pain, but if I bring up the later three I feel like they are dismissed, I suppose because there is not much the doctor can do but suggest exercise. I know doctors are limited by brief appointments and heavy patient loads as well as medical limitations. Sometimes just having experts acknowledge that these symptoms are part of the disease is somehow reassuring. Has there been a poll on patients whose doctors bring up symptoms other than pain, swelling, and mobility— in other words, the invisible symptoms?

  • Lawrence 'rick' Phillips moderator
    5 months ago

    My docotr certainly asks about these things. in fact he spends more time on fatigue, malaise, and brain fog than pain, swelling, and mobility. We have been together now for many years so maybe he may understand my concerns fairly well.

  • JJ
    6 months ago

    Thank you
    So very true. We also do not talk about the negative effect these painful diseases have on our relationships..
    including divorce

  • Kelly Dabel moderator
    6 months ago

    Thinking of you JJ. Thank you for commenting and being part of our community. I hope this article helped remind you that you are not alone in this. Best, Kelly, Rheumatoidarthritis.net Team Member

  • tckrd
    12 months ago

    I guess I am pretty lucky. I am already disabled, use braces, splints, a cane and a wheelchair. I do fear not being able to do the work I want to do in our marriage

  • Westie
    12 months ago

    This article is great and will help a lot of new suffers.
    I was diagnosed in 1998 and I would like to bring to your attention one other aspect of having RA. That not only are the suffers ;
    In pain
    In fear
    Damaged in other ways by the medications we take for RA. These also contribute to misfortune of RA suffers.

  • Bella14
    6 months ago

    Am I the only one who refuses any medications? That’s my fear. As a senior once I start them, I fear the side effects. So I continue to suffer but not like I would on meds. I drop a lot of things, just sprained my ankle taking forever to heal…my hands and fingers are in pain I use arthritic gloves that help. But my DNA just is not good with medications of anything. I had the shingles while back and on my third pill it didn’t agree with me… so I said the heck with them too as there is no cure for that either. Trying to find functional medicine after reading horror stories. I feel bad for all who just want to be well. I go to church a lot I pray for all of you as well.

  • tckrd
    5 months ago

    In this country you have the choice to decide to not get well. I am surprised your doctor takes care of you.

  • Nanci Burns
    6 months ago

    I also refuse all biologics and DMARDS, and methotrexate. I can’t have any prescription pain pills (I’m allergic to all synthetic opioids) because I use cannabis in a state where it is still illegal. I take CBD oil, I eat a diet full of foods with anti-inflammatory properties and antioxidents, and I take a plant-based multivitamin and plant-based probiotics.
    I will not take any drug that suppresses my immune system to the point that the first bug I catch could kill me. I am more afraid of those meds than I am of RA. I have Ankylosing Spondylitis, I’m certified 100% disabled, I don’t have to worry about working anymore, so I can do what I need to do to take care of myself.

  • Norreen Clark
    1 year ago

    Refuse to live in fear

  • Sallygal
    3 weeks ago

    Norreen, I feel the same as you. I also refuse to live in fear of my RA. Or my MS, which I’ve had far longer.

    I have always had a positive outlook on life and I want to keep on doing what what I am able, yet I am kind to myself and accept it for what it is when I have to turn down an invitation or take a nap.

  • Indigo2
    1 year ago

    I have fear at times however, now I try to
    find balance,
    turn the page,
    get enough sleep,
    simplify and have gratitude;
    let go of people who can not understand.

  • Sallygal
    3 weeks ago

    Beautifully said! Thank you.

  • betharooski
    4 months ago

    I agree. !

  • MrsT
    1 year ago

    I’ve had RA for 46 years(since I was 11 yrs old). When I was diagnosed, in 1972, they had NO drugs for JRA. I was given high doses of aspirin. As a consequence, I have alot of joint damage and deformity, especially in my hands.

    I don’t fear the pain; it’s just what my body has always felt, and it’s perfectly normal for me. (In fact I ‘play’ with the pain, use my mind to manipulate it.) I don’t fear the RA becoming worse; I understood from day one that its a progressive disease and that it will always be something to deal with. It just is what it is. I’ve never feared letting others down; Maybe this was because my family always supported me. I just do the best I can and if others can’t understand that, then that’s their issue, not mine.

    I have had a very different relationship with RA than you. I don’t experience the fears that you mention. Maybe its just that I’m ‘me’, a different person. Maybe something happened in my mind at that instant of being diagnosed that set me on a different type of path of life with RA. I’m not sure why such a different experience. I just know I don’t live with the fears you mentioned you deal with, and I wanted others to know…:)

    Thank you.

  • Hab4453
    1 year ago

    This article fits my RA experiences to a tee. I was diagnosed with RA, OA, and gout 5 years ago. Now at age 77, I struggle each day just to do the simple things I once took for granted. I had been on a biologic but recently developed a large ulcer on my lower left leg. My rheumatologist will not permit me to take any biologic until this ulcer heals. It has been 2 full months and still not healing. Has anyone else experienced this type of problem with their RA?

  • KarenG.
    2 years ago

    Amazing article….. Thanks so much!

  • Tich
    2 years ago

    Another great piece Wren. I was still working when I got my Dx, and was able to increase my employer-offered private disability benefit from 50 to 60% of my final salary during annual enrollment. This made a huge difference when I applied for disability ten years later. Still, the insurance company denied my claim and made my life very uncertain while I appealed and went through the whole ugly process. After nine months of economic fear I received notice of my award, and was able to draw a breath. Then as new symptoms came along my Cobra insurance expired and I was dumped into the marketplace as one with pre-existing conditions which would drive premiums up. My employer’s insurance plan for retirees was not available until I started drawing my pension, which had I started it would have thrown me out of the disability plan. So I thank Obama daily for ACA. It works for me. We need this safety net. We have plenty of other uncertainties to fear. Tell your kids to buy disability if their employer offers that. And vote for public healthcare law that prohibits exclusion of applicants with pre-existing conditions. Without it we really are sunk.

  • BLReady
    2 years ago

    Great article. Finally getting some coverage on this disease. Thank you for writing this. Often times, especially in the early times we do not even realize how scared we are. I was fortunate (although sceptical) to have a psychiatrist at my Rheumatologists office I saw for 6 months who helped me immensely through the life changing events. I’m eternally grateful for him.

  • Lawrence 'rick' Phillips moderator
    2 years ago

    Fear can be both debilitating and empowering at the same time. For me, I was stunned with fear when first diagnosed. Then I was empowered to pursue aggressive treatment because of the fear of not doing so. Is one more powerful than the other? Again for me, it was the fear of not seeking treatment that has been more powerful. I realize that is just me and everyone is different of course.

  • sharoncookie57
    3 years ago

    I am so sick of feeling fear of what is to come. As I cannot do yard work or walk in the yard. I am growing my garden in big pots up with reach standing up. Went outside a walked over to get a small pot and started to fall and was able to grab hold of the tree trunk and steady myself.
    Can do floors anymore or wash cloths because they are in the basement.
    What is next year going to be like? Of course my fearful!

  • jojo4ever
    4 months ago

    I completely understand I am only 45 can’t hardly bend grab can’t mow my lawn my house is going to hell in a hand basket I hate this I am to young not to be able to move or do what I want to do. I am sick of people going I have arthritis you can do what ever I do that’s not the case with ra you are literally rotting away at your joints and every time I hurt myself it never goes back the way it was. I fear so much right now I can’t stand myself never been scarred in my life

  • CatherineFH57
    3 years ago

    Amazing article which took some of the guilt away from not being able to do my share of the chores. I’ve often said that I’m so tired of being tired.

    I’ve tried for several days to get to the basement to do my laundry but I can’t keep climbing the stairs so I make a plan to stay down there half the day. We have half of the basement finished into a studio living area for the kids when they visit. My problem is I’m just so tired to get going in the morning from lack of sleep and fighting the pain in my feet, knees, shoulders, hands and my low back. It’s exhausting! At least this article helps me to understand it more.

  • Wren moderator author
    3 years ago

    Hi, Catherine!
    I’m so glad that my post about fear is helping you dissolve some of that “I can’t” guilt. It’s such a deadening emotion, one that can stop us before we even get a start.
    I love that you’ve worked out a way to deal with your laundry in spite of your fatigue and pain. Going up and down stairs to do that chore doesn’t sound like much until you try to do it with RD. Boy, do I get that! So yes, just plan a day “down under” resting while the washer and dryer work. Read a good book. Watch a movie. Just enjoy the downtime you’ve carved out of what was a dreaded task.
    I applaud your strength and ingenuity, Catherine, and I hope that this finds you enjoying the little gifts of the day. Thank you so much for stopping in and taking the time to comment! 🙂

  • Susan Slater
    4 years ago

    A great discussion of some of the fears we face when RD rears it’s ugly head! I faced the fear of disability that you touched on, and thought I had handled it pretty well, all things considered! I chose to think of myself as “differently abled”, rather than disabled, made adjustments to my lifestyle and was moving forward. Until I ran into the dreaded obstacle of discrimination, from the least likely source-my family! My father left a sizable estate when he passed away 4 years ago, to be divided between my brother, sister and me. He knew I was receiving Social Security disability benefits based on my diagnoses of RD and a heart condition which required the placement of a pacemaker, and that without the medical benefits I was receiving, I would deteriorate rapidly and not be able to live independently. So, he established a special needs trust for me, with my siblings serving as trustees of that trust. He meant well, I’m sure! But I am now in the process of taking my siblings to court, having filed a legal suit to have them dismissed as trustees of my trust. We were not a close-knit family; my siblings and I went our separate ways years ago. But I still would never have imagined that they would fall prey to the greed that often accompanies the position of trusteeship! After all, your family cares about you, protects you. My siblings have attempted, legally, to limit my access to the funds in my trust. I should mention that, upon my death, they, and my children, are heirs to my trust. If I did not have RD and a pacemaker, was not receiving SSD benefits, I would have received my inheritance outright, unencumbered, as my siblings did! But because of my medical conditions, my own siblings are treating me as a “second class” citizen, someone sub-par, impaired to the point that I can’t care for myself or notice that I am being cheated out of what is rightfully mine! I am struggling to make sense of the meanness of their actions, the disregard and disdain they obviously feel for me. I have an excellent attorney battling for me, and the support of the incredible people at my state ARC organization. But, I am feeling totally alone in my anger! I worked for years with children and adults with developmental disabilities, and I’ve seen the discrimination that is heaped on them almost daily. But I feel so alone in my fight, and desperately need a voice for my frustration! I would love to hear what other RD patients have faced and experienced in the way of discrimination. I want to shout to the world, to call attention to what my siblings, and others like them, have done simply because they don’t care, or haven’t taken the time to learn about RD and how it affects our lives! Thank you for giving me a place to share and vent safely-any ideas about increasing awareness are gratefully accepted!

  • CatherineFH57
    3 years ago

    My prayers go out to you that you will get the funds your father intended for you. When my husband’s father died, his sister and himself were to receive the sale of the family home and a division of the estate but never received it because my father-in-law’s step daughter and her lawyer were somehow able to take off with all the funds. Best of luck to you.

    As far as the discrimination, my sister had juvenile rheumatoid, my brother was diagnosed a years ago, my grandmother and great grandmother had rheumatoid arthritis. It was no surprise when my diagnosis was rheumatoid. I know it runs in families, perhaps members of your family will get our disease and will become sympathetic.

    I know how exhausting it is to go through each day. This article helped me to understand why. Perhaps your family members should receive and read the articles in this news letter as well as the judge handling your case. It explains the disability and why.

  • Darla
    4 years ago

    Thank you for the excellent post. A gift of describing our truth .

  • jan curtice
    4 years ago

    Well said! I think the fear also triggers alot of the anxiety and depression. Which in turn make the symptoms worse … vicious cycle. A couple of other fears I’d like to add to your list is the “fear of making plans” and the “fear of isolation”. Cancelling much anticipated plans is heart-breaking with deep disappointment. Also, I never knew what it felt like to be truly alone/isolated until RA came to visit and stayed. My support network is there … however, there are times I feel the RA has me captive and I can’t “reach” my loved ones. This fear drives me to carefully follow my doctors’ orders, eat right, go to physical therapy, and practice good sleep hygiene. In the midst of the pain, I remind myself the “true definition” of RA is “Really Active” … and one day that will be me again. I just have to find those times, places, and ways to make that happen!

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