Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
It's no secret that I've been really depressed recently. Everyone sees it. Professional and personal relationships are suffering. My quality of life is down to nothing. I'm now months into what seems to be a never-ending pity party.
I know that people don't "mean" to be rude or unsympathetic or hurtful in anyway. In fact, I know that they say the things they say BECAUSE they are trying to be sympathetic and caring. Unfortunately, that's not how it comes across. With the exception of a few people who know me on a very personal basis, most others just come across as rude and ignorant.
In the past week, I have repeatedly been told time and time again from different people that I just need to "find the bright side", "make light of the pain/situation to others", "pull myself up by my bootstraps", "it's a choice!", "you're giving up", "you'll get better; you won't always feel this way" and "you're young... you'll learn how to handle stress better with age".
I am just SOOOOOO sick & tired of people telling me stupid things like that as if I'm making up this disease. I am in pain 24/7 and NONE of the people saying these things has the disease or anyone in their life who has it. The constant pain has taken away my quality of life as I am not able to do the things I enjoy (painting, writing, playing various musical instruments, etc.). I am currently only working full-time to pay bills and I can barely make it through the work day/week before crashing on the couch each night.
I can't do house chores anymore! I am lucky if I can do laundry once every 2 weeks and even then, it doesn't get folded and put away! I can't tell you the last time I cooked a meal for myself! And yet people expect me to do the same things I did before at work or in my personal life.
But when I DO try to tell them what's going on or why I can't do what I used to do, they think I'm looking for attention! WTF?!?!? I just can't win! And people wonder WHY I'm depressed????????
I am just venting here... I'm having a REALLY difficult time dealing with this constant pain. I am on sleeping pills for night and I STILL wake up from the pain... I feel like my life has been taken away from me.
I know there are others here who know how I feel... unfortunately.
I know that people don't "mean" to be rude or unsympathetic or hurtful in anyway. In fact, I know that they say the things they say BECAUSE they are trying to be sympathetic and caring. Unfortunately, that's not how it comes across. With the exception of a few people who know me on a very personal basis, most others just come across as rude and ignorant.
In the past week, I have repeatedly been told time and time again from different people that I just need to "find the bright side", "make light of the pain/situation to others", "pull myself up by my bootstraps", "it's a choice!", "you're giving up", "you'll get better; you won't always feel this way" and "you're young... you'll learn how to handle stress better with age".
I am just SOOOOOO sick & tired of people telling me stupid things like that as if I'm making up this disease. I am in pain 24/7 and NONE of the people saying these things has the disease or anyone in their life who has it. The constant pain has taken away my quality of life as I am not able to do the things I enjoy (painting, writing, playing various musical instruments, etc.). I am currently only working full-time to pay bills and I can barely make it through the work day/week before crashing on the couch each night.
I can't do house chores anymore! I am lucky if I can do laundry once every 2 weeks and even then, it doesn't get folded and put away! I can't tell you the last time I cooked a meal for myself! And yet people expect me to do the same things I did before at work or in my personal life.
But when I DO try to tell them what's going on or why I can't do what I used to do, they think I'm looking for attention! WTF?!?!? I just can't win! And people wonder WHY I'm depressed????????
I am just venting here... I'm having a REALLY difficult time dealing with this constant pain. I am on sleeping pills for night and I STILL wake up from the pain... I feel like my life has been taken away from me.
I know there are others here who know how I feel... unfortunately.
I feel better knowing that people out there understand and actually care!!!
To answer a few questions (I'm sorry I can't remember who asked what)...
I have been having pain issues for as long as I can remember. I do remember being tested for RA for the first time when I was 12 years old. I had 4 hand surgeries between the ages of 12 to 17. Of course, that didn't help with pain. But, I guess because I was seronegative, they never suggested going to a Rheumatologist.
Finally in 2011, I went to hand doctor thinking I would need another surgery (thinking the pain was caused by another cyst) and he told me that there was nothing he could do surgically and I needed to see a Rheumatologist. My eyes were open for the first time!
The first Rheumy I saw (and his PA) said I didn't have RA (I guess because my markers were negative?). They diagnosed me with Fibromyalgia and Depression. They also treated me for both. Not much (if any) relief. When I asked about the constant pain in my hands they told me it was "probably some form of Osteoarthritis".
Insurance changed and I had to see a different Rheumy in the SAME office. He told me that I did NOT have OA and immediately said I had some form of Inflammatory Polyarthritis and started treatment that day!
I started Plaquenil, Mobic, added in MTX, took a couple of rounds of Prednisone. Had to stop MTX last month due to side effects. Dr. wrote out Rx for Humira... Got declined by insurance, Got declined by Abbvie foundation... Trying 1 more time w/Abbvie and should hear back this week. If I get declined a 3rd time, I will be starting Simponi.
I got my official Seronegative RA diagnosis last month but I have been in pain for YEARS!
I work full-time and have used all of my sick time. Unfortunately, FMLA is NOT an option because we have less than 50 employees and don't need to comply with FMLA.
I have an appt. scheduled with a Psychiatrist in May but I can't get in any sooner. I am on antidepressants as well. I went to the emergency room to get the meds because no one is able to get my in before May.
I'm trying to hold out until then...
I agree with Annette: Sometimes when your referring doc calls they can get you in sooner. I hope you see this. It's so important to have pain and depression treated!
Your dealing with pain, exhaustion & feeling like crap daily while working at a job you need.
Where is your quality of life here?
Who would not be depressed?
I don't know your history. Meaning I don't know if depression is a battle you face because of your illness & pain or if it's separate.
The strongest of people will struggle with depression in your shoes.
When I started my battle with chronic pain I went from doctor to doctor looking for answers. This was before my DX of RA.
Most of these doctors wanted to slap a diagnosis of depression on me because they could not find the cause.
Needless to say after the 3-4th doctor no diagnosis, every day pain with multiple trips to ER & urgent care I discovered what true depression was. Although it wasn't the cause of my pain it was the result.
Actually was the result of pain & dealing with doctors not listening or providing the right treatment.
Hello sooner or later your going to have problems if your exhausted living in pain & stressed out trying to maintain a job while loosing your
Quality of life. Does not take a degree to figure that out.
With that said perhaps it may be worth asking to see a pain management doctor while searching for the right meds to treat the arthritis.
Sounds like you need some relief & control. It has to start some where & if your Rhuemy isn't addressing the pain factor enough then you & your doctor need to at least give another doctor some consideration.
We all know it can take time to get control of the Arthritis with the meds in the mean time you deserve some relief & quality in your life.
Food for thought?
I do feel for you & it's so wrong to be left with all of this on your shoulders.
When I finally got into decent doctors I told them all I simply want what everyone wants. Some quality & less pain. Some kind of normal in my life. No one wants to watch life passing them by.
The doctors are there to help maintain & preserve life.
For the life of me I will never understand why they allow a person to suffer & play the waiting game for decent treatment.
Good suggestion inquiring if your doctor can get you in sooner.
Maybe asking about any cancellations also.
I wish there was something I could do.
I'll say this you must be one strong person.
You may not feel like it but you make it through & that takes a lot of strength & determination.
I so hope you do get a break here & soon.
Blessings,
Sammy
I have been calling about cancellations, unfortunately I haven't had any luck so far. I don't have a referring doctor so there isn't any way they can get me in sooner :/ I may try to talk to my rheumy about getting a single refill next month to get me through, if he will do it.
To answer Sammy's question, I have had depression before my RA diagnosis. Although it has been pretty well controlled until this year. Pain is worsening and I can't deal with it 24/7! I think that drew me back into depression.
I don't know anything about pain management doctors but I will need to check it out. I definitely don't feel like a strong person right now!
I don't know if you're a religious person, but as my brother-in-law is a minister, I do know that many churches offer counseling services for grief, addiction, illness, etc. If that is part of your life - it might be worth looking into.
In those years I spent recovering from my full body super flare, I found comfort in my animals and believe-it-or-not SIMS World. Had never been into video games before. But being immobile by 4 pm each day due to my regular 'joint lockup' zone - I had to do something to take mind off of misery. So I got into Sims. My mind got lost in the virtual world where I could still run and move freely through my characters. They saved my sanity during the 2+ years it took to recover from super flare. Haven't played it since.
I heard a tale about an older farmer woman who fell from her tractor one day. She'd had RA for years, so the pain from her sprained ankle didn't phase her much and she just kept on plugging away at her chores. A few days later she was at church when another parishioner noticed how swollen and blue her ankle was. They forced her to go to hospital. Turns out it was broken so badly she needed several surgeries to fix it. Yet it hurt so little compared to her RA - she never realized it was broken!
...... I tell this tale to people when they ask about RA. Most seem to then realize the true agony of a flare. At least then they have a reference point.
I'm sorry for being long winded. I hope the sun shines for you soon!
GOD bless you! I know exactly how you feel. I'm so sorry.
I will include you in my prayers.....despite how things can appear at times, Christ does listen and He does care about our sufferings.
A good PM doctor gave me my life back.
It's worth asking & worth fighting for.
Pain cannot help depression in anyway.
My heart goes out to you.
Sammy
Once I FINALLY got into get some real help, I can now see myself living a full life and possibly even enjoying grandkids in a decade or two.
I get a lot of quick explanation miles from the uninformed by explaining that constant pain is very wearing even it is isn't a bad pain. Like a little 'ol cup or water or can of soda that you hold out at arms length. It doesn't matter how strong you - eventually it will be too much for you to carry even one more minute.
For the really slow learners, I dare them to hold that out there until If feel better. :) Then again. I'm still fiesty and when I hurt without any respite, I'm also increasingly cranky.
right now if you are working full time and can not make it home, that is where the energy pot is going. make sure your friends know that. i have quite a few that used to bring food to work to me, right at work, since they knew that once the day was over, so was I.
thinking of you
hugs
Ros
I'm so glad I mostly work alone (well at least for this one reason)... I don't have to put up with ignorant comments from Co-workers. I do have customers who try to be "helpful". I have two articles I should send you to give to any one who makes you feel like your making it up or being a wuss. The links were posted here a while back but I copied into MS Word. Send me your e-mail addy and I'll send it over - you can hand it out to all the people in your life who don't seem to have near enough sympathy.
My mom started complaining about knee pain a while back (osteo) and she keep relating it to my pain and what I'm going through... of course I knew she had no clue. So I told her to go get an Xray and see where things were at. Came back as "mild, stable, osteo of the knee" - in other words quit your bitching and take a Tylenol you wuss!
My Xrays about the same time (which I pulled out and put down beside hers) ... " Moderate to Severe tri-compartmental joint space narrowing, Extremely Large Joint effusion on left knee, Overall Severe Secondary Osteo-Arthirits due to RA".
And I was still going to work everyday. I started to get a whole lot more sympathy from my mother when she then realized that the pain she was feeling was no where close to what I feel on a daily basis.