Why do we have to beg for Painkillers ?

The scene – I wake up and before I have time to open my eyes I feel an incredible burning, sharp piercing pain in my shoulder. I lift my head from the pillow to cry out in pain due to the very acute nerve crushing pain in my neck. OMG I can’t move my head at all to the right. I pull the sheets back and my thumb & fore finger is throbbing. I gently swing my legs over the edge of the bed, as my feet touch the carpet my right ankle almost explodes. The pain is like rolling your ankle.

Explaining the pain I would say it feels like my ankle joint is broken…. This has all happened in 30 seconds. I need to go to the toilet to urinate urgently. I put my hands beside me on the bed to help push up to stand. The most incredible pain from my neck that feels like I have whip lash, then I pull my right hand up quickly of the bed because my thumb and fore finger feels like they’ve been crushed – broken. I manage to stand up beside the bed…I’m now standing…OMG my ankle….OMG my ankle, I can’t bear it so I quickly sit back down on the edge of the bed…..I think I’m going to wet my pants, I need the toilet. I see my walking stick.

I get up again…The pain is now at the point where I actually talk to myself out loud. ’This is F@*%#d’ I grab my walking stick. Just holding it in my hand with swollen thumb, fore finger & now wrist I think I’m not going to be able to take the weight…but I have too…So I do….For that 100th of a second I feel that the pain is going to make me pass out. I take my first step. OMG, OMG, I whimper ‘no’. I look towards my bedroom door it looks a mile away. I take another step…The incredible pain..I think ‘This is insane’. I shuffle another step…tears are forming…another step and I take a huge breath of air…OMG…another step another whimper ‘Ahhhh’. I’ve now shuffled 4 steps… every step I whimper. I get to the door and I now have tears rolling down my face…….

I could go on & on. Getting to kitchen, getting a glass for a drink…PAIN….The day doesn’t improve.

Has anyone else felt this? What do you guys use for pain killers?

Thanks
Have a great day
Damian

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Comments

View Comments (19)
  • KarenG.
    4 years ago

    Praying you find relief…. all y’all!

  • Jackie
    4 years ago

    Tramadol 50mg 3x daily
    Plaquenil 200mg 2x daily
    Nuerontin 300mg 3x daily
    Just now being treated again for RA. I have had RA for 31 years. This flare has been bad for me. Besides the pain I am so tired all the time. Also I use a cane all the time now.

  • Rhonda
    4 years ago

    Prednisone 2.5mg daily
    Humaria pen injection 2 x a month
    Methotrexate .9mg per week
    Plaquenil 400mg 2 x per day
    Relafen 500mg 2 x a day
    Morphine 60mg 3 x a day
    Percocet 10/325 4 x a day

    Whew !!

  • Connie
    4 years ago

    Percocet 10 4x daily
    Neurontin 600 3x daily
    Soma 350 mg 2x daily
    Mobic 15mg 2x daily

  • Hermix
    5 years ago

    Hi Damian, are you familiar with PeaPure? It’s a bio-identical and natural painkiller with anti-inflammatory and restoring effect. For research see:
    http://www.chronicpaincoalition.com/1/25/502/pea-normas-peapure-t-clinical-trial-overview-details
    It’s not cheap but very effective as I’ve read in many reviews and the articles, and no side effects. If you decide to try it, take it for 3 weeks before you draw any conclusions; it takes some time for it to become effective.
    I myself have been able to control inflammation and pain with adaptogen herbs untill now, but if things get worse first thing I would do is order this stuff.
    Just like you I need my body to function properly because of work I need to do on my house, some of it quite straining like repairing gutters and replacing ceilings etc. Recently found out that I have food intolerances, which seem to add a lot to my fatigue, which is the biggest obstacle right now for getting things done. Will get the exact results next week, so hopefully I will be able to improve my energy level soon by changing my diet.

  • vicki b
    5 years ago

    I can’t remember a pain free day for a long time now. I have tramadol and Mobic for pain currently. As time (and damage) continues there are many days these are not adequate for the amount of pain I have. I use ice, fish oil, topicals and am working on the fact that I just have to sit instead of participating sometimes now. I am 59 and sometimes look and move like I am 80! It is a shame that abusers of narcotics and financial gain from illegal sales (sadly including some medical professionals also) has taken its toll on people with painful progressive illnesses. It sounds like many of us do not have proper pain control because of this. All the illness education states keep moving, stretch, exercise, do yoga, walk etc… Are these directives coming from healthy people with no pain or what? I so want to do these things and I know they are the healthy way but how for crying out loud can you do these things when you can hardly bend or reach well enough to wipe your own fanny?? Seems like better pain control would certainly enable the painful body to move better and slowly become stronger!?!! So sad the very people narcotic pain medication might help the most are the first to be shut out of their benefits due to bad actions of others and fear from prescribing physicians. Wishing pain free days for all!

  • ralph treg
    5 years ago

    I must have the most bestest Rheumatologist in the free world. I was relating to your pain. And relized I can do just about everything I want to with some limitations, of course. I hope you can find a RA doctor that can help you.

  • DENISE TROYER
    4 years ago

    So what does your Rheumatologist give you?

  • Damian author
    5 years ago

    Hi Wren, Thanks for the reply. My Rheumatologist recently told me that I have to get my GP to write up pain killer’s scripts due to the fact the Australian Governments medical regulating body is auditing any specialists that write up too many painkiller scripts, WTF? So is the Oncology specialist in the same predicament?
    Have a great day to all
    Damian

  • Wren moderator
    5 years ago

    Read through the other comments and your responses. Back in the day (27 years ago) I was given everything from Tylenol 3 (Tylenol with codeine) to Percocet–in limited quantities, usually 10 tabs per prescription. If I needed more, I had to go in and see my doctor.

    I was also prescribed the whole gamut of NSAIDs, trying one after the other in the hopes that one of them might relieve that awful pain. Nada.

    Today I mainly take Tramadol, but my rheumatologist has also given me a prescription for Vicodin. This good doctor treats me like the adult I am and trusts me to take it responsibly, which I do. Both pain relievers help, but as you’ve probably found by now, their efficacy wanes as your body gets used to–and then finds ways around–them.

    I’ve continued to take various NSAIDs here and there. They still have no appreciable effect on my pain.

    Moist heat on a flared joint can be soothing. Ice is helpful for some people, but it tends to make flares worse for me. Wrapping a flared joint with an Ace bandage can also be soothing, both for the support and the compression it offers. I frequently wear Isotoner compression gloves on my sore hands. They are sometimes (not always) soothing.

    Wishing you the best, again.

  • Wren moderator
    5 years ago

    Yes, Damian, I’ve felt this. I felt it many, many times during the first 10 years my RD became active. My heart goes out to you.

    When they talk about increasing the regulations on narcotic painkillers and forcing pain patients to seek “alternative” pain treatment, like biofeedback or “more exercise,” I’m alternately frightened and infuriated. Frightened because how does one even start to function with pain like you’ve described, let alone exercise or sit quietly, focused on one’s own breath and heart rate? Are they kidding?

    Unfortunately, they’re not. So many people abuse pain meds or get them to make a profit on the pain of others. It’s a terrible shame, given that so many of us really do need and sometimes rely on them to live a normal, productive life.

    I hope you’re under the treatment of a good, competent rheumatologist. Treating the disease itself is most important, of course, for getting the pain it causes under control. I also hope that your doctor is compassionate enough to prescribe the serious pain relieving medications you need.

    Wishing you well–and no pain.

  • Damian author
    5 years ago

    Suzette,Melissa & Mary thanks so much for taking the time to reply. The medication that I’m currently on : prednisone 40 mg, Leflunomide 20 mg & Rituximab (Rituxan).

    I’ve also taken at different times over the past 20 years these: Methotrexate, Cyclosporine, Sulfasalazine, Tocilizumab (Actemra), Etanercept (Enbrel), Adalimumab (Humira)& Tramadol. I’ve been involved with two clinical trials. Being high dose Chemotherapy (Cyclophosphamide)& a stem cell transplant @St Vinnie’s Hospital Sydney Australia.

    As you guys would all know, one day I’m fine (1-2 joints that are mildly painful wrist and ankle)to the next day I can’t walk, I can’t open a jar lid – I’m crippled.

    I’ve tried a multitude of pain killers. Currently I have 240 Panadeine forte per month 8 tablets per day…I’ve been on this for 10 years or more. Recently my Rheumatologists agreed to give me 1 script for 28 10mg Oxycontin & 28 20mg Oxycontin. I take the 20 mg Oxycontin in the morning & the 10mg Oxycontin just before dinner in the late evening. I’ve found that this works heaps better than the Panadeine forte (I think that I’m almost immune to this?)

    Both GP & Rheumatologists do not want me to be on Oxycontin for an extended period of time. It’s illegal to use marijuana where I live and truth is I don’t want to be stoned or out of my brains BUT I need-want to be able to do the necessary work so I can sell the family farm & build the new house.

    I’ve proof read this 3-4 times and I keep thinking ‘what a whinging, whining, moaning person I must seem’

    Do you guys take this sort of pain relief? Do you guys work physically (like building a farm fence, drenching cattle or painting a house?)

    Am I asking to much?

    Again I truly do appreciate your honesty & replies

    Have a ripper of a day
    Damian

  • JS Stephens
    5 years ago

    Oh my, sounds like me! This severe ankle/foot pain has happened to me twice during my 17+yrs. with RA. 1st time was a yr. ago, I woke up & couln’t walk at all.My daughter took me to er cause I thought I had broken a bone it was so intense. Xray showed no broken bones, but the dr. obviously knew nothing about RA. He said I had cellulitis & prescribed strong antibiotics. Three days later I was taken to my rhemy & did not have cellulitis, but a huge whole body flare. Terrible horrific pain everywhere. Then it happened again a couple of wks. ago, but at least I knew what it was this time. In bad cases, he gives me a prednisone injection which works, but oh my, side effects are bad. I take 3 Norco tabs daily now for the ever-increasing pain, methotrexate & enbrel weekly.I hope you find your answers and relief from your pain…

  • Melissa Miller
    5 years ago

    Hi Damian, just read your post and it honestly gave me flashbacks to when I first became symptomatic over 6 years ago. The description of the ankle pain sounds exactly like I experienced. It was unbearable…so much so that I ended up literally crawling to the bathroom. I don’t want to seem like I’m stating the obvious or anything, but are you taking any DMARDs to help control the disease, such as Methotrexate or a biologic? Before I was put on Methotrexate, I could barely walk. I was taking prednisone to help with the pain but that’s not good to be on long-term. Once I was on the Methotrexate for a couple of months and we got the dose adjusted things got much better. I still have pain daily and often deal with fatigue but I am able to function fairly well. If you are not currently on a DMARD, I would recommend talking to your rheumatologist about it. I have found the Methotrexate to be helpful though I haven’t had a pain-free day in over 6 years. I wish you the best of luck in finding something that will relieve your pain.

  • Mary
    5 years ago

    I had very bad pain too. My Dr doesnt like giving pain meds but I started taking cinnamon pills everyday. It took a week or 2 to notice but it actually does work!! Its safe to take with all your meds cuz its just cinnamon! Look it up.

  • Damian author
    5 years ago

    Thanks Mariah & Andrew for your replies. I was hoping to get some more replies to see what other people suffering from RA are taking for pain relief.

    My issue is that I have a farm that I’m trying to sell & that there’s a lot of work that needs to be done firstly so that I can sell for a decent price otherwise I will lose lots of $$$$. I’ve purchased a small block of land to build a house that is low maintenance and RA friendly that I will live in once the farm is sold.

    If I’m not doing physical work (sitting resting all day) I have minimal swollen painful joints and I only need mild pain relief….BUT after working physically I have several very painful joints that requires stronger pain relief.

    My new GP & Rheumatologist both say that I shouldn’t be doing such hard work. I’ve explained that without doing the necessary work that I can’t achieve 1 selling farm and 2 building new house and Bankruptcy is almost certain..

    I’m still curious to what other people take daily for pain relief

    Have a great day to all

    Damian

  • Mariah Z. Leach moderator
    5 years ago

    Hi Damien ~ Thank you so much for taking the time to share your story. I am so very sorry to hear that you are dealing with such a large amount of pain. I agree with Andrew that this is a topic that really makes sense to discuss honestly with your doctor. In addition to providing pain killers, your rheumatologist may have some ideas for how to get your RA under better control so that you are dealing with less pain in the first place. Best of luck to you and remember that we are here to support you!

  • Andrew Lumpe, PhD moderator
    5 years ago

    Damian, sorry you’re having so much pain. You should really talk to your doctor about this. I’ve used a variety of pain killers. I took a couple of prescription NSAIDs (Mobic and Salsalate). The Mobic worked really well until it started chewing my stomach up. My rheumatologist gives me a big prescription for Tramadol. It’s similar to narcotics but with much milder side effects. There’s some argument about whether or not people get dependent on it. If pain gets really bad, you should request a narcotic. Most doctors will start with hydrocodone (Vicodin). Oxycodone (Percocet) is stronger. These have traditional narcotic side effects along with concerns for dependency. But research shows that people with chronic pain don’t tend to get addicted. Come people with RA find that a pain doctor or physiatrist is helpful. And if there’s something going on in your joints, it could be that you need to see an orthopedic doctor. Be proactive and I hope you find some relief. http://www.aapmr.org/patients/aboutpmr/pages/physiatrist.aspx

  • Andrew Lumpe, PhD moderator
    5 years ago

    One thing I forgot to mention is that some rheumatologists believe that if the disease is under control, then so should pain. This seems to be a reasonable approach but not maybe universally applicable. The point is that you might also talk to your doctor about your RA treatment plan and whether or not it is working.

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