How much does Rheumatoid Arthritis really hurt?

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And the number one symptom of rheumatoid arthritis is…PAIN!

Yes, Pain.  Not discomfort.  Not just a bit achy.  Severe,  unremitting, endless pain.

Pain prevents rheumatoid arthritis patients, or at least those with moderate to severe RA, from doing many simple daily tasks.  Like doing up buttons.  Like opening a jar.  Like walking…

Sometimes I can physically do these things.  It’s just that it hurts so incredibly much to do so, that I choose not to.  But is that really a choice?  Does this mean that I can’t do it, or does that mean that I just won’t?

It means I can’t.  If the pain is so great as to prevent a person from doing something, they can’t do it. Period.

Should you do it?  Hard to say.  Some people subscribe to the ‘push through’ or ‘use it or lose it’ mentality.  I do that when the pain is mild to moderate.  I go ahead and do whatever I need to do that day, and I don’t usually complain.  I don’t usually show it.  No one around me would be able to tell that I am in considerable pain.  Because RA pain is invisible, and of course pain itself is subjective.

I have said before I wish I glowed red or purple or some other colour when the pain is bad, so people have a finate way to guage what I am feeling.  Inarguable evidence, because clearly my word is not good enough.

Not so that I can get sympathy.

So I can get some understanding.

So that people might realise why I am moving slowly.  Or why I’m a bit quiet, or why I’m a bit down today.  Or why I don’t want to spend hours shopping.

Or why I don’t like their big dog jumping all over me.  Or why their child hitting me with a toy baseball bat is not at all funny.  Why I can easily lose balance and fall…and why that landing will hurt me so much more than most people.

When the pain is severe, I rest.  I don’t see it as a choice. It is not a choice.  It is exactly what RA does – it takes choices away from you.  Whatever needed doing that day can’t be done.  It doesn’t matter if I am out of milk.  I have to go without.  My kids have to go without.

The pain is so all-encompassing that even when I am lying still, it remains.  RA pain is not pain that happens on moving a joint, it is always there.  It is never gone. Some days are better than others, but I always have joints that hurt to some degree.

When it is severe, I am incapacitated.  Pain causes fatigue.  Just dealing with pain day to day is exhausting.  It’s like you’re using half of your brain power just to block out the pain.  You are constantly doing things to try and shift the focus.  Your brain is constantly engaged in that struggle.

When the pain is extreme, you can’t think of anything else.  You can’t ‘take your mind off it’ …try to work on the computer.  Or watch a movie.  Or read a book. You can’t concentrate on anything.  You can’t follow the plot.  Your entire world is the small space around you, and you protect that zone.  Even someone trying to give you a hug, or a reassuring squeeze of your hand can cause renewed agony.  It’s well meant, but it can make things hurt worse.

I am not overstating the case. 

The pain of a Rheumatoid (or other inflammatory) Arthritis flare is well acknowledged by the medical community as some of the worst pain there is.  People ask me occasionally what does a Rheumatoid Arthritis flare feel like.  This is what a flare feels like.  Some people have flares every few weeks…or every few months.  Some people feel like this every day.  Some people with very mild RA have never felt this.  But they live in fear that one day they will.

This is RA.  Pain.

 

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14 COMMENTS

  1. My daughter tells me all the time that she hates hearing me say I can’t do something…I have always been a strong person and have always done everything myself. In some instances I can’t, physically it would be so painful for me to do some things I just don’t even try. or that I would pay for it the next day. I know that I am perceived as lazy, but I don’t care anymore. I have seen the photos and have known people with severe joint damage. The pain is bad enough thanks.

    • Its hard, isn’t it Claudia? But good for you. If the pain is so bad as to make something impossible, you really can’t do it. You don’t have a choice. Hopefully your daughter will come to realise that. It’s great to have a positive attitude and say “can’t doesn’t exist” but I’m afraid it does! Accepting what you can and can’t do is one of the hardest lessons to learn with this disease…and getting to that acceptance is not negative, or lazy…its a positive step down a very long road. We have to be realistic while we fight the pain. Which is most definately bad enough!

      Arthritic chick signature

  2. I hangout on google, no website. Great title, caught my eye immediately because right now it hurts to even sit and type, hey there were days 3-4 in a row I couldn’t do that!

    I wasn’t diagnosed until last month and am in moderate to severe stages based on cartilage and joint damage, as well as bone. I don’t have flares anymore. This is 24/7 for over a year now. Haven’t seen a rheumatologist yet. I do qualify for biologics automatically as I’m recovering from cancer and used corticosteroids for years (asthma, allergies, eczema) and of course it always worked best on my arthritis everyone ignored.

    • Hi Patricia, you mean because you have been on corticosteroids for years, your RA was ‘masked’…the corticosteroids were keeping it in check? Obviously it didn’t prevent joint damage…very sorry. I hope you can see a rheumatologist soon – and that a biologic can help you. 24/7 severe pain is a misery. You have had a very tough road, and must be a very strong lady! Keep me posted on how you go with your rheumatologist – good luck.

      Arthritic chick signature

  3. Hi, I’m 35 years old and I just had my hip replaced a month ago. My hip had gotten so bad that when I would stand it not only hurt but I would have to wait a few minutes to move because my hip was locked and I couldn’t take a step until the joint rotated to the right place. My friends and family finally convienced me to get the hip replaced saying how much better I would feel but I had my doubts. Well the hip actually feels great but its the rest of my body that is still me that hurts like hell. It’s depressing to be in this much pain day in and day out. I am a miserable person. No depression medicine can touch the reality of the pain I live with. Imagine someone takes a baseball bat and beats you black and blue….thats what my RA pain feels like in half the joints in my body….only my wounds don’t heal…I live in the hellish pain every single day:( If you don’t have Severe RA I pray you never get it, if you do have severe RA I pray you can find a place in your mind to go. God Bless!

    • Hi Alice, I’m so sorry you’re in so much pain! I can very much relate, I have some very bad days. But it sounds like every day is pure agony for you. Do you have pain meds? I don’t doubt that depression meds don’t help…you’re not suffering ‘depression’ but misery from pain. What treatments are you on? Have any helped? Don’t give up! There must be a medication combination that can help you…at least get some relief. Please stay in touch…we can support eachother. Wishing you some relief soon.

      Arthritic chick signature

  4. I’m currently 23, I was diagnosed when I was 16 but was living with the pain for at least a decade . I’m fairly optimistic about having RA because there are way worse to things to be diagnosed with, but the one thing that angers me is that NO ONE understands the pain!! My wrists are the most targeted spot and for some ungodly reason people seem to be attracted to my wrists and grab/squeeze them tightly. It infuriates me to the point where I feel the need to yell at them, because how many times do people have to be told ‘don’t touch my wrists, please’. By the end of the conversation I’m being laughed at and told to stop exaggerating. People are not informed enough about RA, and the pain/damage it causes, especially people my age!

    • I feel for you, Steff. While I agree, there are definately worse things to be diagnosed with, RA is rough. Especially when you are so young. Very few people take the time to learn about RA and really understand that the pain is *real* and it is BAD! Having people laugh at you is appalling tho…I’m sorry. The lack of understanding makes Rheumatoid Arthritis a worse disease than it otherwise might be, and so much harder to deal with.

      Arthritic chick signature

  5. I have had severe JIA since age 11 and am currently in a battle with the state of Arizona to give me back the health insurance I need to be able to receive treatment with a rheum/Orencia (they discontinued because of state budget cuts and my not having dependents – for real). They are refusing to cover me while waiting to attend an appeal hearing, it has been 6 months and I cant believe I dealt with this as a kid. It is very depressing and today has been my worst thus far, but there is 6 days left til my hearing and I am so glad I found the words of someone who can truly empathize. It makes me sad to know other people, especially children and young people like myself (23), have to suffer the same way i have, but it also gives me renewed courage to keep going forward and find that place in my mind where there is still hope for my future. After the hearing, regardless of its outcome I am going to file suit against the Department of Economic Security and State of Arizona. Thank you.

    • Hi Brittani, I’m sorry for not responding sooner…and sorry you’re in so much pain and can’t get the treatment you need! Its the same all over, it comes down to money. Which is appalling when there are treatments that can really change your life available…but the state budget says you’re not worth it. And you are so young…so much life you should be living. Just a few days until your hearing now – please write back and tell me how you went? And with your suit!!! All the very best to you…hoping for the best!!!

  6. Thanks! No worries on the reply, everyone is busy! My hearing did not go the way I anticipated, it is complicated to explain but basically I have to go through the appeal process all over again, with this latest hearing taking place June 7th. I got to where I was unable to care for myself and my mother had to fly in and help me and I even required an ER visit in order to get a little relief so I could get a few days of >3-4 hours of sleep at a time. Fortunately my family scrounged up some cash to send me and I was able to visit my usual rheumatologist and she very thoughtfully provided me with Orencia subQ samples and a methotrexate script so I can at least start the healing process now. I didn’t think anyone could be angrier than myself at AZ DES but I think I was wrong on that – immediately after examining the damage she wrote a very to-the-point, handwritten letter to the department and insisted I present it at my next hearing date. <3
    Unfortunately there is little faith I will be covered by any government agency before Jan '14 so my dad is looking into adding me onto his policy and I'll probably leave Arizona end of June to stay with family. Still set on filing suit, however, just gotta do the research and find a lawyer willing to help. 🙂

  7. Hey, I was 16 when I found out I had RA I am now 20 years old and I feel like an old person. I have it in my knees and believe me not a day that goes by it doesnt hurt , I feel like in 20 years Ill be in a wheel chair because I can barley walk now. I just want to know is this really a serious disease because just dealing with this is making me so depressed.

  8. I’ve never been so happy and actually couldn’t wait! for ONCE! to wake up ? Pain or no pain ! ((Well I wish no pain were true ,))but if it were? To join and read ,everything on this site ..that I accidentally found …y’all have actually helped my pain ? Oddly enough? because I now see other people saying the same things!! I say or think every stinking day of my life! It’s like OMG!? I’m not going crazy !? I seriously had screamed in my house, I guess I need to check myself in the mental ward !!! where they can just keep me sedated so I can quit complaining as I have lately , I realize this is a severe severe flare !! as it’s called, there’s so many things I want to say ? but I will wait but it’s so true I’ve tried every single thing out there to relive this mind boggling pain ? other than going downhill to the drug seeking world and become an addicted addict stuck somewhere or just plain dying

  9. I’ve been waiting for three months after going to a “quack” who asks me ?? because he don’t remember me ? Each visit,,, why did we take you off that drug? Ohh because I was sick and almost died , pretty much each time I’ve went for over a year! I was finally diagnosed April 2012 so maybe I still am new to this ? I thought I’ve read everything as they sent me out of the office with a bunch of pamphlets and said you’re going to need to read these but yeah! hey ? we caught it early,, I believed! With every positive thought ! I was actually going to go in “remission “? I would be fine like the PA said ,, so with that being said from that day on! I have lost just about everything I HAD my own salon friends “!,friends” ? I had high hopes ! Unrealistic expectations because I am a type A personality …ADHD ,,,My Mind keeps going,,, my mind says do it ! you can do this Brenda you are a strong person ! you have been through hell and back !I am going to write a book if I can ever use my hands again .. But while my mind tells me to walk my BODY refuses ! stops me! but I have since lowered those expectations because I’ve learned no matter what every doctor smiles and walks out the door and goes on happily! Making money off people like me!! I feel like I have been a guinea pig for doctors…. thank God , so far my husband has insurance! But I have learned nothing lasts forever nothing is for sure you have to lower your expectations or you will just go into depression as I have many times! I guess positively speaking ? LOL doctors get two buy the new cars! So maybe at least I’m making them happy? I don’t seem to be a burden on them ? maybe I should of went into the rheumatology school of medicine instead of hairstylist for 25 years a job I loved my career disintegrated little by little people left

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