Rheumatoid Arthritis and Depression
New Rheumatoid Arthritis and depression study not surprising
Rheumatoid Arthritis and depression is in the news this week. It seems researchers have found that most RA patients battle depression. The study was done with 75 RA patients, mostly women.
Was anyone surprised? I have never met anyone diagnosed with Rheumatoid Arthritis who did not experience at least some depressing thoughts over the diagnosis. It is a normal reaction to news of such horrifying proportions.
For me, it was like a sentence without a crime. Of course I grieved! I grieved the myriad things which I had planned but would never do. I grieved my future. And I grieved the delight of running on the beach. I grieved the pleasure of being able-bodied.
There is a normal grief process with several stages. Psychologists call it the normal grief process for a reason. It is considered healthy to encounter and process grief in each of those ways. And then it can be put aside.
Clinical depression is a more lasting sadness. It is like getting stuck. Often, counseling or even medication is needed to become un-stuck.
Rheumatoid Arthritis does not go away, like other problems may
That’s the catch. Most things in life tend to cycle around: We have hard times, but they usually pass. Then there are some better days. There is an opportunity during a stronger period to process what has occurred.
But Rheumatoid Arthritis never reads the rule book. It tends to only progress. (That means “get worse.”) So, there may never be a period of lower stress during which you can process the feelings and move forward. Instead, there are often more shocking developments and more losses to grieve as the days go on.
It is pretty difficult to avoid getting stuck. Remember the diagram of the 4 courses of RA? Who could scale those peaks and not fall into a pit?
4 Things we can do about Rheumatoid Arthritis and depression
First, we can allow ourselves to grieve. We can face the facts as they unfold and purposely move through the normal stages of grief, even if we must do it repeatedly (since the onslaughts of the Rheumatoid Arthritis are repeated). We can even welcome the grieving as healthy since we have honestly lost much.
Second, we can connect with others who understand and validate our grief. Often, those close to us do not understand what Rheumatoid Arthritis is or have denial issues about RA. Imagine trying to process grief over the death of a friend while folks are telling you “It’s not so bad.” As if it really is not. As if there had not been a death. That denial would not help the grief process.
Third, we can examine our medications and supplements. The study in the news today found that Rheumatoid Arthritis patients who use steroids are more likely to become depressed. Some supplements like Omega fatty acids are good for the RA symptoms and for our brains. Discuss depression with your doctor and consider what might be changed.
Fourth, of course, if we become truly stuck, we should ask for help. Sometimes, as mentioned, this means counseling or medication. At least for a spell.
A final word on how to think about Rheumatoid Arthritis and depression
Once in a Bible study on I Peter, I was taught something that really helped me: Stop being surprised at the trial you are enduring. You have brothers who are enduring the same suffering all around the world.
Peter was referring to persecution. But, it helps so much to stop being surprised at our suffering. No one is surprised at the grief of a cancer patient. Getting diagnosed with Rheumatoid Arthritis is bad news. We ought to grieve.
Edit: updated 8/29/14
Here’s one of the other articles on RAW Rheumatoid Arthritis and depression – click here.
And an interview I gave on depression recently in a magazine (scroll down to page 15) – click here.
Links to the RA / Depression study:
Recommended reading:
- Why Am I Rheumatoid Arthritis Warrior?
- Rheumatoid Arthritis Makes Things Difficult
- Mistaken beliefs about an RA blog?
Kelly – I can so related to these feelings. Sometimes the pain and the just not feeling well feelings never subside and of course, that causing feelings of depression. I have learned to accept have RA and Fibro and I know that "a sentence without a crime" feeling and all these feelings of grieving – I know it all. I still feel like somedays like I will be in wheelchair within a year and other times, I remind myself it does not have to be that way. But stress plays a big role in my flare ups and working in a law office is not place for someone who needs to minimize. I take it one day at a time. I have to.
Hi Living it.
Yes, you are right. One day at a time; we have to.
Thank you Kelly, that's really helpful and a proper boost to morale! Best, Franky
Kelly,
A very inspiring post. Even for non RA patients, we could all use some encouragements from this article. Some good ways to deal with depressions, applicable to many. Most importantly is to not keep it within our ownselves, but to speak up, telling somebody about it. Praying is a good way, as we know our prayers will be listened.
@wchingya
social media/blogging
Thanks for addressing a touchy subject. I have certainly seen the five stages of grief since my own diagnosis. And it oftentimes bounces back and forth. I think that sometimes it's different for folks with chronic illnesses like RA. We know we have many more years ahead of us but the continual fight with RA tends to wear us down at times.
Ching Ya, welcome 🙂
Yea, we can't grieve and be done with it because there is always another blow coming in.
But we gotta try…
Hey maybe for RA there should be the 50 stages instead of 5. Haha.
Finding myself in a whirlwind of depression, with no signs of out, I live day to day and hope the next is better then today. It doesnt always work but its all I have. Alot of the medications say not to take with alot of others i wonder how prozac falls into that category. i sure could use 10 mg in my daily life to help the humps.
Dear Shannon, I think I know how you feel. My RA is always worse & never better – no matter what I do. I did see a counselor for a while in the beginning to help with the grieving. By the way, lots of RA patients take anti-depressants so maybe ask the dr. Feel free to email or FB message me any time if you need to talk.
I have been with RA since I was 32 years old, when the doctor told me i had RA I thought my life as I knew it was over.I had so much anger & rage i wanted to tear my house apart at times,fell into a depression for a few weeks but then I thought I am not going to let this RA take ME down. I’m a strong woman I can handle anything it throws my way.I pick myself up & moved forward on the fight for my life. Her I am still standing after 27 years of this misery & pain & still get down in the dumps, but always somehow pull myself out with out another Pill 2 help me along..So we must always talk to our self and just fight another day & pray a lot,what & b patient for a cure HOPE!! is our friend.
Good advice, Roxie. You have faught a long fight. Thanks for sharing – it builds our hope, too, to hear your stories.
Kelly, one day at a time is by far the best advice you can give. I to live one day at a time, but I also “Refuse to Lose” I will not let this beat me. Yeah I am in pain, it hurts sometimes just to move, but mentally I refuse to let this get me down. People are shocked sometime when I desribe RA as a Blessing from God, for now I appreciate everything I am able to do. From the simple things like getting out of bed to going on walks w/ my little girls. Kelly you are right in saying we are not alone in this fight, and that helps me every day, for I am always reminding myself that somewhere there is someone else who is probale suffering far worst then me, and if they can keep going on then so can I. Thank you again for this site,I count it as one of my many Blessings, and remember to “Refuse to Lose”
Hi Tom, thanks for taking time to share. That is a healthy point of view and I know it will encourage others. Do you have any other friends w/ RA?
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Given the emotional roller coaster ride, side effects from the meds, not knowing how you are going to feel until you try getting out of bed in the morning, the constant pain and fatigue battle…, it is enough to get even the strongest person down at times. The out come of some of these studies is so obvious. I just hope that they lead to the health care providers reaching out to give people all the help they need. I also hope it helps those with RA find comfort in knowing it is OK to reach out for help. It is in their best interest to keep the mind healthy when fighting the ugliness of the disease!
Love your picture with this post!
True Jamie. I think a large number of people fighting RA struggle with depression and we don’t know how many of them get the help they need. I love that you look at the pictures. It takes time to create them and choose them and I always wonder if anyone looks. LOL – sometimes it’s “depressing” to work so hard on them & no one notices. Joking. 😉
Kelly, this is the first time I’ve posted a reply but I’ve been reading your site for a while. I feel as though you have provided me with a desperately needed life raft these past months. I’m so grateful and so impressed with your efforts to educate others about RA. THANK YOU!
I am 33 years old, and it has been 9 months since my diagnosis, and it just recently hit me that this is not a temporary thing. You can know it in your head, but to really accept that is a huge thing! My grief about this has been a series of these types of realizations.
For me, the reactions of people around me really add to the depression I feel. Even people who are the closest to me have said things that make me feel as if they don’t believe me or that I need to just suck it up. It’s very hurtful! It’s helpful to know that I’m not the only one who runs into this!
Hi Gina, thanks for speaking up so I know you are there and what you are dealing w/!
That is a good point. You are not alone in that situation. I get plenty of letters saying similar things. This is why I’m working so hard on trying to get Woman’s Day to acknowledge their error and portray the real RA. (link for anyone who hasn’t seen it) Media misrepresentation of RA is a huge barrier to us getting the support we require. Meanwhile, we can reach out to one another, because others w/RA ( or AS or PA) get it!! I hope you are finding a treatment that works.
aarrrggghhh Kelly! The picture of the tree you used up there is covered with poison ivy – the blight of my childhood. Well actually remembering that misery might make my RA seem less disastrous. Guess I’m a little less depressed now. lol.
Are you sure? We took it in my neighbor’s back yard. I’m going to ask her. LOL!
Prior to being diagnosed with RA, I was married to a man with an injured back and his chronic pain definitely manifested itself thru depression. I have read articles about the link between chronic pain and depression. It seems a likely progression. So it means another thing to treat. I’ve had some really low moments with my RA and my life and divorce, but with the right help and positive mental attitude, I’m better than ever. I take 1/2 of a celexa most days to help combat the depression. It works wonders. I exercise at least 5 days a week – somedays I only can ride the bike for 15 – 20 minutes or take a short walk but I still try to get out there and get the endorphins flowing.
I have also constantly reminded me that while RA is a cross to bear, it’s mine to bear and it truly could be worse. I’m with a man now that lost his wife to breast cancer at age 41. I’ve lost friends to cancer, accidents and some to depression that they never recovered from. The way I look at it is that we have a choice. We can wallow in our self pity, or we can try to rise above it and try to look at the bright side. It takes an effort to be miserable and it takes an effort to be upbeat. But being upbeat pays off in dividends and you can fool yourself into feeling more upbeat!!! And keep telling yourself that you’re going to go into remission. Swear to god it helps!!
Leigh
Thanks, Leigh. I have told myself every time that this new treatment will work. What we say to ourselves can help. If anyone else wants to read it, I wrote a post about that last year – link – click here.
Actually it might be Virginia creep instead of poison ivy but I could only spot “leaflets three, let it be”. Virginia creeper has 5 leaves but the plants look really similar.
Great article, Kelly. We, with RA, should not be afraid to ask for help. Chronic pain actually changes the brain chemistry, and sometimes, no matter how positive we try to be, we need medications to correct that chemical imbalance. There should be no shame attached to that, any more than a hypothyroid (under-functioning thyroid) patient should have taking thyroid hormone supplement. I look forward to additional articles on RA-related mental health issues, to bring awareness, and lessen any possible shame, attached to them.
Thanks, Julie. There have been some great points made here too about how we need acceptance and assistance and how dealing with the RA on top of the discrimination and ignorance makes it much worse. You are so right – funny how when someone finds a remission, all these other issues are “better” too. It is depressing to not be able to move and to live in chronic severe pain that is “invisible.” That’s why it also helps to know we aren’t alone. :heart:
Thank you for talking about this issue. It is quite relevant to me b/c I was dx with bi-polar d/o in 2003, and everyone seems to treat the two as separate illnesses. I may have mentioned this before, but if I could just get the dr’s and family etc to see that I am an entire human being and not just made up of these composite illness parts, I might get a little more understanding!
Kelly I think i’m fighting RA depression each day and pushing it back as best I can.Living with pain daily is overwhelming even for those of us who think we can ignore it. I keep believing that I just need to find the right stuff…Methotrexate and what? to work it out for me. Frozen shoulder and jaw pain are the enemies im fighting currently. Toes, wrists, hands and ankles joined the club almost a year ago. I am so blessed to find you at this site where someone that actually cares and gives advice and love to others through writing. Often this site is a balm for me mentally to stave off my private tears and depression about this awful, awful disease. Love you Kelly. God uses each of us to help others. Your gift is this site.
Thank you, Debra Alexander
Hi —
Thanks for all you do! I’ve been reading RA Warrior for several weeks now, and I am so impressed with your courage, and the fact that you are using some of your precious, limited energy to help other people with RA.
I have to consider myself one of the lucky ones. I have had RA for about 10 years (developed it at about age 69, for heaven’s sake!) and though it deformed my hands, we (my wonderful rheumatologist and I) were able to suppress it with methotrexate and a biologic. I generally have a pretty high energy level, am physically active, and volunteer at the local Arthritis Foundation. So I am indeed privileged.
The best to you. Please know how much your blog means to other people who have RA.
Thank you so much for all you do too Janice and for letting me know you’re there!!
First of all, I live with a son who has had clinical depression for over four years now. He is on meds for it that have greatly improved his life.
Depression is an illness just like RA and not something you can “push through” or “think positive thoughts” to make go away. It is a chemical imbalance which has nothing to do with having a better attitude or looking at the bright side. It’s as misunderstood in society as RA is. What we experience with RA is grief that can and does turn to depression at times. If you have depression get help because it’s a very dangerous illness untreated.
I think to keep grief from becoming depression is a good goal. Experience your grief but, seek support through sites like this, through starting your own local support group. Have them meet in your home if you can’t get out. No worries if your home doesn’t look like Martha Stewart lives there because you’ll be meeting with other RA people who fully understand how hard housework is for you.
I just wanted to throw out some info on depression since if you have it *and I know this wasn’t intended at all by anyone* but, people tend to misjudge you all the time. They tend to say things which are the equal to “buck up!” That just makes real depression worse. Without treatment for depression since it is a chemical imbalance you literally cannot physically “look at the bright side” by definition. So don’t feel bad if you find that impossible. It’s normal, but depression is far more treatable than RA, find a good doc and decide how to treat that secondary illness too. Most times depression is very treatable. Untreated you are at very high risk so don’t just blow it off. Tell your doctor if you think you are clinically depressed rather than just experiencing normal grief processes.
I find grief websites helpful! The steps are the same whether it’s because of RA or the loss of a loved one. We have lost a part of ourselves, the vibrant, able bodied part of us. You can work through grief as many times as you need to. But again please, please don’t just try to white knuckle through true depression. That’s very dangerous and there is no need with proper treatments available.
Diane, we are on the same wavelength lately. Working on a post abuot this. Just got a great new ebook on depression today – can’t wait to share it all – in a day or so. Thanks for your helpful words.
I’m glad you find the post helpful Kelly. Living with someone who has depression I’ve learned how dangerous it can be if it goes unrecognized for what it is. I also know how people confuse normal grief stages with depression..grief experts recognize that certain types of prolonged grief can become depression which requires further medical help. That’s why I think grief groups are so helpful here. You get help walking through the steps and are taught to recognize any pathology cropping up that could lead to something more serious for you.
What I’m finding I want to learn about is all the co morbidity with RA. There’s a lot of it. So many questions! Since it’s auto immune does that mean we should look at children who have very severe allergies both food and environmental as being at risk for RA later in life OR are these extremely severe auto immune responses a kind of RA too? Depression is understandably something we are at risk for but, there seems to be more.
I just think being pro active is the only way to fight back. I want every tiny bit of info I can get so I will have the best tools to make decisions with going forward.
The depression thing worries me with some people since it is indeed terribly dangerous untreated. Thankfully, it is also one of the most treatable illnesses you can have. Being motivated to seek treatment when you are depressed is a major challenge so I posted in hopes if anyone sees it they’ll feel a nudge to discuss with their doctor whether they are depressed and seek the best treatment options before it becomes life threatening.
I am 74 and I have had severe RA since I was 35. There has been a great deal of damage done in many places, I am taking Humira injections every second week and Methotrexate onece a week. Something new has happened, osteoarthritis is happening where the damage has been done by the RA. Because of this I been going through grieving again, wondering what the future will bring and whether I will be able to manage. Of course I will!
Thank you for posting this, it helped enormously as I just had a weekend of grieving for what we (principly me & my husband) have lost, what the disease has done to us, what it has stolen from us, what it could still take from us and how unjust the opinion of other people often is. Even my newly dry eyes managed to produce great big tears!
I don’t consider it depression but reaction to a realistic view of what’s actually happening, and grief is a much better word for where I am.
After I’d let it all out I was ready to face the world again and cope with a genuine smile because there’s also a huge amount I give thanks for.
Well said, Penny. Grieving as needed and then getting back to living – it’s a very normal response. And healthy response to unexpected great loss.
Wow! What a powerful post. I was diagnosed with Rheumatoid Arthritis 5 months ago. In my area of the country, it is very difficult to get in to see a Rheumatologist and all of my initial energy was focused on getting my pain under control and getting into a doctor. When I finally got into see one, I don’t think I was prepared for this yo-yoing with the different medications and my pain is still not under control. I am particularly low right now. I was not able to get out of bed for Thanksgiving and I feel guilty about what this disease means for my kids. I am on an antidepressant, but after this holiday and reading your post, I think I need to get into counseling too.
I was finally diagnosed 3yrs ago after years of pain and it at the time came as a relief to have an answer in that time I lost numerous jobs as I work in construction(earthmoving)and to not turn up can cost a employer thousands as trucks and workers can do a thing without you there costing me several highly paid positions my partner and mother of my children saw me as a bludger and my relationship fell apart. Which all added to unbelievable stress which as I’ve learned brings on my flare ups or bouts as I called them. The feelings of worthlessness is my constant companion my now ex partner needs financial help to raise my two beautiful children and so I bounce from job to job as no employer can understand the irregularity of this disease so depression is also a companion of mine which again brings my bouts on. The hardest part I’ve found is not the pain as its a part of my life now it’s the lack of understanding out there if I say oh I have RA people always say is it worse in the cold thinking ostio it’s the arthritis part that throws people not realising its a disease not wear and tear. I’m glad I found your article tonight as I’m seeing my doctor tomorrow and will let him now of my depression it’s some thing I’ve kept to my self as I’ve felt it was just a weakness but to get treatment for it might at least lessen one more trigger thank you for putting it up. Best wishes to to my RA family
I have RA- officially diagnosed in 2008 when I was 32 but started to have pain several years earlier. I am also a therapist. I am pretty open with my clients (I work in a community mental health center so tend to see low income and medicaid/medicare clients) about my health issues as well. It is hard not to be open becasue i am frequently wearing braces or compression gear to help while I am working. I find that this opens up the discussion with many of my clients who are dealing with pain even if not related to RA. I am able to use my own experience to help them realize how much of an impact medical issues have on your mood and daily life. It is grieving for your past life and finding your new one. Learning to accept your limitations rather than fighting against them. Depression comes frequently with medical and chronic pain. Getting help makes a big difference. Medications can help but many of my clients come to weekly group sessions which make them feel like they are not alone. They talk and this helps them feel better. I highly recommend this. Online support groups work as well. Sometimes I feel talking to my clients helps me as much as it helps them – this is slightly unethical but a product of feeling understood by others who share your diagnosis in a way others can’t. Your blog is very helpful to others and is providing some of these services as well. Thank you to bringing these issues to the fore front.
I posted about adjusting to life with RA and depression on another blog on this site recently. Since that time, I’ve obtained some medical records of a visit I made to ER for a severe reaction to one of the medications I was on.
From what I can gather from the records, the reason for my ER visit was inaccurately reported by the resident to the consulting rheumatologist. What is written as the reason for the visit was generalized pain instead of accurately reporting my symptoms. The rheumatologist did a cursory exam of my joints – I was complaining of gastrointestinal upset, flushing, feeling very unwell so it seemed a little odd to have a joint count. The rheumatologist decided and wrote that my symptoms were likely due to “somatizing depressive symptoms” since my joint count didn’t show any active inflammation and my CRP was normal, exam of abdomen was normal.
First, I’m not sure “somatizing depressive symptoms” makes any sense if one studies what somatization means. I have read the criteria for somatization diagnosis and I doubt any of us would fit this category. This nonsensical term is right in step with other terms we’ve heard: catastrophizing, exaggerating, arthritis personality, centralized pain disorder, etc…
Second, because I have been honest about my struggle with depression and pain (don’t we all have episodes of depression with this disease and in life)… the doctor grabbed depression as an explanation of my symptoms rather than looking for the obvious connection between my symptoms and side effects of medications.
How does one battle this antiquated approach to treating RA ? I can tell you I feel totally demoralized and misunderstood. This example of medical treatment, or lack thereof, is wrong on so many levels. This incident and some subsequent events has made me want to hide what I’m going through practically at all costs. I no longer trust that I can get proper medical treatment from the doctors I’ve been seeing.
Because I am intelligent and resourceful, I have obtained further imaging tests. Surprise, surprise, the results show that my RA is actually worsening – which I have been reporting. There’s more erosions of the bones in the joints, active synovitis, and hypermia. I do not have conspicuous swelling – as we have all read on rawarrior is often the case. My CRP and ESR are normal – which is also evident in a large percentage of people with RA as reported in many research studies.
So what am I taking away from this?
1. The shared experience of thousands of people with RA on this website has been invaluable in giving me the knowledge, courage, and strength to continue to fight this disease having faith in my own integrity.
2. I will not be reporting all my symptoms or struggles to the doctors – I’m sorry. I know we’re encouraged to do so but I simply won’t anymore.
3. I am pursuing finding a new rheumatologist, but as we know, the choices are usually very limited.
4. It is essential to have the proper imaging tests of joints when disease activity is in question. We have to advocate for MRIs and ultrasound tests to monitor disease activity as these tests give the most accurate picture.
5. I will continue to attend counseling for adjusting to life with RA and monitoring mood as I know how important this is to maintaining health.
Here’s another link to a research article on RA and depression.
http://rheumatology.oxfordjournals.org/content/45/11/1325.full.pdf+html
It’s an important topic. I suspect depression is totally under-reported by people with RA.
Thank you for this article.I keep grieving about a life that will never happen again. All my husband would like is for me to walk down a sandy beach again as we have done in the past.The pain that would cause I can nearly walk on a tile floor.What can I do. The people that just say you could do it if you wanted too drive me crazy
They just don’t get that I can’t pick and choose when I feel good
The Vancouver Sun newspaper, in Vancouver BC Canada just published a few articles about the potential impact of the recent publication of the DSM-5. This is the manual used by psychiatrists to diagnose mental health illness. The criticism of the new DSM-5 has come from psychiatrists, professional associations, people with medical conditions, and other prestigious sources who recognize that there are normal reactions to life events that will now be labeled as mental health disorders. For example, the normal grief response that follows the diagnosis of RA might be labeled as a major depressive illness. If one wants to become knowledgeable about the disease and spends time researching, this can be labeled as somatization disorder.
Please take the time to view the video, read the article, and post comments. Thank you Sharon Kirkey and the Vancouver Sun for writing on such an important topic. Many people who are diagnosed with chronic medical conditions such as cancer, diabetes, rheumatoid arthritis or muscular dystrophy will be given a mental health label when their reaction to developing a catastrophic illness is normal.
Medical science is light years away from adequately explaining the anatomical and physiological changes that occur in the body when certain medical conditions are diagnosed. For medical doctors who are not well-equipped to accept these limitations, an easy scapegoat is to blame the patient who presses for answers and to now assign mental health labels to them, essentially oppressing natural inquiry and shutting people down.
With the DSM-5, we are returning to the dark ages where people who are physically ill were treated as mentally ill or crazy. This is terrifying to those of us who have chronic health issues as the consequences can be severe. http://www.vancouversun.com/health/Infighting+boycotts+resignations+Psychiatry+faces+another+crisis+confidence/8401678/story.html
TIRED DEPRESSED. DIAGNOSED AT 32. NOW 58. NO FIGHT LEFT. DEPRESSION IS CLINICAL I AM SURE. CANNOT COME UP WITH GOOD REASON TO GET UP MOST DAYS NO ENERGY LEFT ISN’T THERE A MEDECINE THAT CAN GIVE ME THE GET UP AND GO THAT IS NOW TOTALLY GONE? RITUXIN AND METHOTREXATE NO LONGER WORK ALL ELSE FAILED A LONG TIME AGO VICODIN LEAVES ME A ZOMBIE I WANT TO FEEL UP NOT DOWN WHY CAN’T THEY GIVE ME SOMETHING FOR THAT PROBLEM ANY ADVICE WELCOME FADING FAST
JUST TO FURTHER CLARIFY, BOTH FEET SURGICALLY ALTERED 2000, 2002 METACARPAL HEADS REMOVED; MCP JOINTS REPLACED IN LEFT HAND IN JANUARY WITH SOME SUCCESS BUT NOWHERE NEAR THE MOBILITY I HAD HOPED FOR AND LITTLE PAIN REDUCTION BUT AESTHETICALLY MORE PLEASING WHICH HELPS BUT I WILLM NOT DO MY RIGHT HAND – BTW BOTH FEET NEED FURTHER SURGERY AND NOT NO WAY BUT NO *&%^%$WAY. SO I AM NOT A WHINER, HAVE TRIED TO BE BRAVE AND A WARRIOR AND STOIC BLAH BLAH BLAH AND NOW I NEED A LIFT AND WHERE IS IT?
Deborah- I am sorry to hear you are in so much pain. I understand about being so tired. I just started Modafinil to help give me a little “pep”. It works pretty good but when my body needs to rest my mind is still going, which is a little frustrating. It might be worth asking your doctor about it.
I had a really bad night and thought I was going to die last night. It turns out I was having a reaction to my 2nd dose of Orencia. Back to the drawing board for another new medicine.
I just want my old body back for a few days. I forgot what it feels like to have no pain.
We all have to hang in there for each other until a cure is found. Hopefully tomorrow will be a “good” day for both of us.
Hang in there!
Deborah,
So sorry to hear of your struggles. It is a battle to find the right meds to help controls the symptoms and pain. Remember, what does not kill us, makes us stronger! You are an RA WARRIOR! You have a purpose and reason to be on this planet and to be going through this trial. You must be here to teach others how to deal with pain and adversity. How to go on when you feel like you have nothing left. How to dig down deep into your soul and live another day. And to be determined to make that day a bit better than yesterday. Tell your doc that the Vicodin doesn’t work and that it messes you up. There are other meds out there. YOU are your best advocate for your care. It is tough but find a good doc that will listen to you and treat the whole patient.
Sending you hugs (careful not to squeeze too hard and hurt you) and strength to keep fighting!
I hear you Deborah. It’s a shame the meds don’t work for some of us & that being stoic doesn’t make it go away, isn’t it? I wouldn’t worry right now about what anyone else thinks – you just need to get some relief. Have you talked to a doctor about how bad you feel? There are options if the Vicodin is not the right thing for you.
I’m praying that you find relief soon.
Fourth: If we become truly sick… Huhhh?
Guess I just assumed that depression is handheld by an auto-immune diagnosis, not realizing some may feel, heal & deal better.
I’m on the path to happiness, but keep getting stuck on life’s ups & downs .. family probs, 3 generations.. Very difficult to pretend you feel okay when you just.. don’t.
You don’t need to pretend you feel ok. I think we all do it & it can be a good strategy sometimes, but not when we are stuck (the fourth point was about when we are “stuck”). When the low points really stick us, we need to ask for help – whether it’s a loved one, a counselor, or medication.
And no need to apologize. This is about honest discussion of feelings – how else can we help ourselves or others?
I just really needed this article and these comments today. I’ve had lots of ups and downs the past 5 and a half years since the sudden onset of RA. I have never thought of myself as one to let myself get down and stay down too long. I am generally pretty upbeat in spite of the trials. With RA though, the pain is always there…some days are milder than others but it’s always there. Just earlier this week I was really struggling with depressed feelings, wondering if I should talk to my doctor about it. I don’t burden my friends talking about it…I don’t want to come across as whiny and attention-seeking. It’s difficult to feel like you’ve just got to suck it up and deal with it alone all the time. I can’t remember the last time I woke up and thought, “Man, I feel great today.” It just doesn’t happen for me. It’s pretty depressing to think about the fact that I haven’t felt truly “good” in over five years. So thanks so much for the validating article and comments. It really helps.
“I don’t burden my friends talking about it…I don’t want to come across as whiny and attention-seeking. It’s difficult to feel like you’ve just got to suck it up and deal with it alone all the time. I can’t remember the last time I woke up and thought, ‘Man, I feel great today.'”
Melissa,
Like you, I’ve been in constant pain since the sudden extreme onset. I’d love to wake up & feel ok again someday & I never give up hope of it.
It is sad that some wouldn’t accept that & were not the same after that. But you do need to have someone you can “burden” with it – who can handle it when you let it all out once in a while. After a while I found those few rare people who can handle more of it than others & more than I thought they could – without thinking I’m weak. I hope you do too.
Sorry my last post was such a downer — chins up!
This is why I loved my former primary care doc. When I finally worked up the courage to ask about depression, her response was, “why haven’t we talked about this before?” She understood that depression went along with everything I’ve been dealing with all these years. I’ve taken an anti-depressant since, and it has made getting through two hip replacements with complications and multiple surgeries (4 per hip!) and two knee replacements, all in the last 5 years, plus a recent diagnosis of diabetes, more tolerable. So, don’t be afraid to ask, and don’t convince yourself you’re handling things well when you know you’re not!
thank you Anne. Beautiful words.
I was diagnosed over four years ago, almost can’t finish college, had to quit soccer team, i used to practice 3 times a week, i was very active in my community and church and i had to give up ’cause i wasn’t strong enough.
my family still doesn’t understand my pain, they keep calling me lazy ’cause i can’t get out of bed so easy. i haven’t found comfort in any of my friends, i practically lost all my friends ’cause they can’t understand why i can’t go out to party and dance like they do and i choose to stay at home and watch movies instead.
it’s been really hard, and to be honest only my faith has given me the strenght to go on. i’m thankful for having this kind of websites so i can relate to other stories and know that i’m not alone in this. We have to Stay Strong and do our best, and if you’re having a bad day don’t even thing about what others might say, just live your life YOUR way, ’cause you’re the only one who can completely understand your own body.
Let’s keep trying, stay strong, and hope for a cure!
Here’s one of the other articles on RAW about depression: Fighting depression>>
https://www.rawarrior.com/fighting-rheumatoid-arthritis-depression/
And an interview I gave on depression recently in a magazine (page 15)>>
http://www.healthmonitor.com/sites/default/files/arth_jj13_noa.pdf
Depression first and foremost is a liar. Don’t believe a word it says. This disease can really suck and there were times when I just wonder why bother…I felt useless, I felt like a burden, worried, scared, the uncertainty. What I realized is that I have to take it day by day. I have finally come to accept that I have this disease, but I don’t have to accept crappy treatment, Dr’s who don’t listen, and friends and family who want to give me a hard time. I have to learn that I have put myself first and take care of me, or there will nothing left for anyone else. I does get better. Don’t compare your disease to anyone else’s, because we are all different. We all react differently to different treatments. Find a good support group. There are many on Facebook. Be nice to yourself. You deserve it.
Thank you Kelly for another thoughtful article! It’s been a year since my struggle started, and I have had my moments that’s for sure! My boyfriend suffers from depression, he is on Cymbalta and highly recommends it. So far I have been able to pull myself out of it after a few days, but mostly because of him.
It is so great to have a place like this where we are free to talk about our illness and complain to each other! It was hinted to me that maybe I didn’t want to talk about my illness so much, but that can be difficult. I have tried to explain, I don’t talk about my disease because I want your sympathy or expect you to help me. It’s just a part of my life, like my job or my child or my hobbies. It’s frustrating when people don’t understand. So I started a blog, just a place where I can go and vent or talk about issues or write about the funny things that cross my mind during the day. I think having that, and a place like this to come to, are a great help! Sometimes I come here just to read the stories and remember how lucky I am I can still go to work every day and do most things without too much trouble. There is always someone worse off than me…..
I’ve experienced depression several times throughout the corse of my RA, diagnosed in 2004 by FP dr and diagnosed with Rheum in 2011. With that diagnosis is life changing events. With all the denial of the disease with family, friends and some doctors is it any wonder that depression happens.
Kelly -GREAT topic! Reading through all the responses makes it VERY clear that those who encounter indifference or misunderstanding from lived ones about RA are those who seem to be expressing the most suffering. I can sympathize – with an ex husband who used RA against me in many ways, deepening the depression and (I believe) creating more emotional stress that resulted in a worsening of symptoms – a vicious cycle!
I am so glad for this forum and for Kally’s tireless work. This. Website should be required reading for all of our loved ones – it is too important to maintain a support network and too much damage can be done through careless or ignorant words from those who are closest to us.
I’m heading into a flare – triggered by emotional stress – but since I am also experiencing depression my Rheumy is not comfortable going to steroids as they might make the depression worse. As a result, I’m dealing with agonizing hot poker pain that so many of you are familiar with, and I can’t stay on my feet for longer than a couple of minutes. I have to say, I am getting to the point where I feel the need to avoid any entanglements/relationships. I realize I am too sick to even absorb the petty cruelties that often creep into these relationships – what used to be a minor annoyance now, literally, cripples me. This is a new grief…but, as I have for the last several years, I’ll weather this one as well and believe it is right to allow myself to experience the grief and move through it rather than burying it. Thanks for this thought provoking subject Kelly.
This is rambling, but it’s the best I can explain. My first symptom of rheumatic disease (there’s disagreement about diagnoses) was depression. I hurt, had no energy, had difficulty concentrating, remembering details, and making decisions. I felt guilty and worthless, could not help myself, was anxious, irritable, and restless. I tried to maintain my former activities, I could not get going, and I blamed myself! The more I struggled, the more I felt mired in quicksand. I was treated for depression, and I felt better, but it did not help enough with the pain and fatigue, because depression was a symptom.
I finally realized that when I feel better my mood is better, and when I’m in pain and/or fatigued, I feel worse. D’uh. Sure, there is a mind-body connection, but I do not have as much control over how I feel as I thought I did.
Researchers know that the rheumatic diseases–rheumatoid, Sjogren’s Syndrome, Systemic lupus erythematosus, etc.–involve inflammation, and that inflammation affects all parts of the body. Chemically, the same inflammatory cytokines that affect our joints and other body parts affect our brains. Drugs, foods, and behaviors affect our chemistry, and we can alter those, but not predictably, and not all the time.
The sameness and unpredictability of chronic disease wears on you, and you get tired, and the cascade of chemicals washes over you. There’s a certain type of surrender that is needed to create a certain type of resilience.
Yes, we’re warriors, and we fight, but judo is required. The principles of seiryoku zen’yō (maximum efficiency, minimum effort) and jita kyōei (mutual welfare and benefit) applied with the concept of jū yoku gō o seisu (gentleness controls hardness): “In short, resisting a more powerful opponent will result in your defeat, whilst adjusting to and evading your opponent’s attack will cause him to lose his balance, his power will be reduced, and you will defeat him. This can apply whatever the relative values of power, thus making it possible for weaker opponents to beat significantly stronger ones. This is the theory of ju yoku go o seisu.” (http://en.wikipedia.org/wiki/Judo)
Life is bearable when I rest when I have to and do what I can when I can. I had to learn how to be sick well–to learn what I can (thanks, Kelly!), to give up what I had to (my job, my income, many friends) and pursue what I need (disability income, support from others).
The only real mistake, I think, is failing to be kind to ourselves.
I understand depression too. I just spent half of the summer in hospital. First a hip fracture, now a bone infection in my foot caused by neuropathy – caused by documented surgical blunder years ago.. Facing weeks on IV antibiotics, risking C-Diff from all those antibiotics. Over 30 surgeries in 15 years.. Can’t take TNF’s now because of this serious infection, can’t increase Prednisone for same reason…..joints flaring…little sleep, 2 big city hospitals, no solutions. I’m 50 and just get so tired of the fight sometime. The light at the end of the tunnel seems so dim sometimes and seems to keep moving further away.
And it seems that loneliness is compounded by isolation, lack of independence, sense of friends pulling away. Does anyone else encounter that or is it just me?
My hope circles around my faith and family. I’m encouraged by this blog and Kelly’s work and activism. I can’t understand why this disease is so underfunded, under researched and downplayed by so many. What other disease causes so much damage? What other disease causes suffering and disability for years and years and years? I’m confident that there will be better treatment in the future, but it is time now for rheumatoid disease sufferers to speak up and fight for themselves and for future sufferers. I certainly never want my children or nieces or nephews to walks down the path I am now hobbling and sometimes rolling along.
Wow! I’ve had depression for years before I realized what is really going on. I have six living children from 3 mo to 9 years. I have had flare ups with all of them but they have gotten worse over time. I’ve prayed over the years for a source of this depression and now I think I have it! The effect of the chronic pain on my mind and body. It’s hard not to be unable to keep up with laundry and dishes, etc and to be so sore I can’t hold my baby up to bounce on her legs or even carry her in a backpack because of the pain. The tears are falling fast even as I wrote this. Thanks for providing a place where I can share and others will understand what I’m going through. I’m finding it hard to even stand up by the end of the day. I’m trying diet and lifestyle modification first and trying to moderate stress and for healing of past emotional pain to get at the root of this.
Yes. Been there and got the T-shirt so to speak. What’s really depressing is that my RA doc won’t treat any of the side effects and other diagnoses that relate to RA (RD).
Depressed? Go see your general practitioner.
Pain? Go see a pain specialist.
Hands hurt (swan fingers and trigger fingers)? Go see an orthopedic surgeon.
Broken back? Oh well.
He wants nothing to do except prescribe biologics.
Makes me even more depressed since I did have a doctor who treated everything but she retired.
Anyone else whose doctor doesn’t want the responsibility/liability of treating anything other than the disease?
Debra your comment has struck a point related to one of the core reasons for this site – I’ll try to answer more fully in a blog post soon.
As for now, my advice is to do whatever you need to care for yourself. And yes I’ll acknowledge it’s really hard work with RD.
It truly is a vicious cycle and I look forward to reading your comments and those of others.
I truly believe it shouldn’t take a village of doctors to treat this disease. Comprehensive care from one source is ideal and is the most compassionate care giving. Whatever happened to that? I hate talking about my symptoms and repeating myself five times over to every doctor treating side effects caused by this hideous disease. Don’t get me wrong. I understand that this day and age is full of specialists, and of course, I’d want an experienced and knowledgeable heart doctor to treat heart disease, but the basic issues we deal with, like depression because of this disease, could be treated by a Rheumatologist.
Diagnosed almost twenty years ago, I was never depressed. Mine at least was manageable with a prescription. They have us shuffling around from doctor to doctor when we can barely shuffle anymore!
There has been a definite switch in the Rheumatologist’s role since my diagnosis and it is not a good one. Many have left the field of rheumatology and those newbies are not in tune with the critical care required of the patient. Either their hands are tied with regulations and the fear of malpractice or this new breed of specialists are not medically trained as those earlier ones.
Rheumatologist’s are a dying breed… just like us.
Thanks for listening, Kelly. It really does “take one to know one” and I truly appreciate the time and effort you put into keeping us informed as you fight this battle too!
OMG! This is brilliant, just found it. I’m a nurse and it took me months to figure out that I was grieving my diagnosis. And am still grieving and just started with a counselor. Will see if I can get her to understand that part. Anyway, my rheum and I held onto the hope that I had some post-Lyme autoimmune arthritis for a year and half. But it kept progressing and once I got him to radiograph my hands … now I’m living the MTX dream. Ha, ha.