This isn't exactly related to my RA (at least I don't think so- still want to talk to the rheumatologist), but I finally found out what's wrong with my back. I have severe lumbar arthritis, stated in the MRI report as "extreme facet ligamentous hypertrophy" (swelled ligaments pressing on a nerve).
It started Sept. 30th. For over 2 months, my primary care doc insisted it was a muscle strain, even though I told her it hurt in my spine and down my butt and hips. I was out of work for 2 months, and used up all of my accrued time. I went to the rheumatologist, expecting it might be some type of arthritis, and got stuck with the PA, who said it's impossible that it's arthritis, because arthritis would have to show up on an X-Ray! (I can't wait to shove the MRI in her face). Finally, I found a back pain secialist in the phone book. He did the MRI and gave me the results. Now he wants to stick needles in my spine once a year and fry the nerves.
The problem is, the back specialist didn't take me out of work- he wants me to keep popping oxycodone until he sticks needles in my spine (supposedly in the next month or so, if I even consent to it, I'm scared to). My primary care doc sent me back to work a couple of weeks ago, because I was feeling better for a few days (of course I was at home sitting down, and she still insisted it was a muscle strain), and so now I have no note to take me out. Also, if I had a note, I would still need her to fill out disability insurance forms, because I'm out of time and would lose my income. But, she's out of the office 'til Tuesday, and I can't get an appointment with her until January 5th. I called the back specialist's office back, and they said he'd call me back, and he never did. I do have an appointment with my rheumatologist on the 28th (the actual doctor), and I plan on bringing the MRI with me.
I have been working through the pain of RA for 2 years, often limping into work because my hips hurt so much. Now, this back pain, which hurts 5 times worse, I just can't deal with anymore, and no one will help me. I broke down sobbing today at work after standing for 2 hours, and then lifting a 50-lb. box. I've actually been fantasizing about suicide, though the only thing that stops me is I can't stick my husband with a mortgage he can't pay by himself, which is also why I can't stop working unless someone fills out the papers.
I don't know what to do anymore. I'm trying to get somewhere with 3 different doctors, and 2 of them refused to do an MRI, and all 3 are always unavailable. I'm in constant pain every day, and expected to do a job that involves extended standing and lifting mail totes and records boxes. Do I have to crawl into work when I can't walk anymore? I'm taking oxycodone like Tic-Tacs, and I'm still in pain. If I call into work Monday, I'll probably get fired soon, and then I'll lose my house, or have no food or heat (I have no savings). I really just don't want to live anymore. No one will help me. What can I do?
Q: How much pain am I expected to work through?
If you have thought of suicide because of the pain, you are in too much pain and clearly need help. if you can handle seeing another doctor, try a second opinion - there may be other options for your pain control. Ask one of your doctors for a referral to a pain clinic where they treat pain with a multidisciplinary approach that can often be more helpful than just a prescription. As well, check out a post I wrote a while back about working with RA - your employer is legally obligated to accommodate illness/disability and that post has links to a number resources who can help you find out what kind of accommodations you are entitled to that can make your job easier on your body. You may also want to consider applying for SSD (that link will take you to a post that has links to places with helpful information to speed up that process) or going back to school to help you find a career that is less physical (if you're on SSD, you may qualify for vocational rehabilitation services that can help you financially with tuition cost, etc).
However, your first step is to get effective pain control, because without that, everything is more difficult. I looked at your profile and you're only on one of the DMARDs (disease modifying antirheumatic drugs like sulfazalazine,
Methotrexate and Enbrel) and it's clearly not doing the trick for you. The first step to effective pain control is to get your disease suppressed, so I would recommend that you talk to your doctor about treatment options such as switching to another of the DMARDs or perhaps combination therapy with two or more different DMARDs that will hopefully suppress your RA to such a point that you pain lessens. You will likely still need painkillers, but getting your RA under control will be a big help.
I, too, have RA and am dealing with chronic back pain. I have osteoarthritis in my neck and lower lumbar spine with ruptured discs and degenerative disease. I can understand what you mean when you say it's one thing to deal with the RA pain, but the back pain is almost intolerable. My back pain really makes my hips hurt worse too. I finally gave in to having the injections into the vertebra and I'd say it helped about 50% - but that better than nothing. The relief lasts about 2 months and it creeps back up agan. They can do about 3-4 shots per year. Unfortunately, there is nothing that makes it completely better. I would recommend seeing a good Pain Specialist. They will be willing to listen to you, but make sure they let you partcipate in the plan of care. Don't give up... just keep on searching for someone who will listen to what you are saying. I've also found that using a muscle relaxer at bedtime really helps with that early morning back stiffness and pain. Good luck!
donna
I think you need a new Dr. I also have RA, and an Xray showed AS in my lower back. I thought it was just the Fibromyalgia. Now Doc tells me I have Lupus too. I'm trying to keep working but it's getting so hard! I hear you about getting fired. Are you getting family medical leave? I also take a muscle relaxer at night. You may need more meds! It's called better living thru chemistry! I wish you the best of luck...hang in there and have a Merry Christmas!
I have what is called disintigrating arthritis. Every part of my body hurts at one time or another. I take Morphine sulf and Hydrocodone and cry a lot. And think about suiside, but I am to weak to do it. My family doesn't know my pain so I can't get help from them and they all live to far. My husband does all the care fore me. He is my caretaker.
Well Starhill13, Try to be brave. I am one of Jehovah's Witnesse's and I put my faith in him. I pray to him for the help I need.
If you ever get the chance to speak to one, please do, you will have a moment of peace.
Bless your heart, just know a lot of us have been there with the extreme pain and the thoughts of throwing in the towel are normal. You need to find new Doctors who will listen and get you under better care!!! ( and you also need better pain medicine control for the time being) until you can get some answers and real quality care. Talk to your RA about a pain specialist unless he will over see your pain meds and also see where he wants to refer you next. And if that doesn't work, keep trying , do not give up! There are doctors out there that will give you quality care and good pain control. Good Luck
Jessica
VA
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