Are my expectations for pain relief too high?
I am getting very frustrated with my RA pain. About 6 years ago I developed carpal tunnel and had surgery to correct it, this began several years of repeated efforts to solve my joint pain in both hands all fingers.
I was seronegative so my Primary Care and my Ortho Dr keep up with many different meds and 2 more carpal tunnel surgeries. My PC finally referred me to a Rheumatologist who repeated blood work which was still seronegative, prescribed meloxicam, and some NSAIDS.
After several months of contained worsening pain, the doctor said and I quote "Well what else do you want me to do?" I'm sure I don't need to explain how I felt.
I found another Rheumatologist who diagnosed the RA, started me on steroids and methotrexate. I felt a big sense of relief mentally that I could now address the issue. As I watched my a couple of fingers and toes cripple, and pain that continued I started to feel discouraged again.
I am a retired Psychologist and believe heavily in using your mind as well as medical help to deal with pain.
I started Humira 5 months ago, and I am not feeling relief.
Here's the question. Are my expectations for pain relief too high? There are times I cry in pain and other times I can deal with it. My Rheumatologist sent me to a pain specialist who said "nothing I can do for you, you've tried all the meds I would recommend!"
Hi,
!
I am so sorry you are in such pain. It does sound like you have done what you can to get answers and potential relief.
I hate to say that your expectations are too high, as that's kind of defeatist and I don't think hoping for minimal or no pain is some unattainable ideal that you shouldn't reach for. That said, you may or may not have hit the edge of what the medical community is able to provide for you at this time. RA is such a tricky condition, as some people can experience relative comfort while living with the condition while others are in near constant pain. Some folks' bodies respond quite well to medication while others' do not. And we don't seem to fully understand "why" at this time.
I think you are fully within your rights to want and to expect less pain. Whether science/medicine can help you is another issue. Have you looked into any alternative therapies? Please know that I don't recommend trying anything without checking with your physician first and, like any treatment, what works for one person may not work as well for another. Some of our members have tried things like acupuncture, tai chi, massage, etc, with varying levels of success (full disclosure; some individuals have experienced a worsening of symptoms when trying these treatments, but that's not the norm within this community). https://rheumatoidarthritis.net/alternatives-therapies/.
I am so sorry you are hurting. Please know you are not alone in this and you are not being unrealistic. I do hope you keep fighting for treatment options and that you find one that works for you and brings you some lasting relief!
Best, Erin, RheumatoidArthritis.net Team Member.Erin, thank you so much for your honest answer, I'm currently looking into alternative therapies. I realize for acceptance is important mentally, but I'm not sure when I should move from keep trying to acceptance and I realize that's a very personal decision.
With your professional background, I am sure you understand much better than I about knowing when to move forward, for your mental health. I think Rick offered some good insight as well. RA can be such a lonely disease because every person experiences it so uniquely and its still a poorly understood condition for the general public. Best, Erin, RheumatoidArthritis.net Team Member.
SUEANNE61
I wish I could say this will be all OK, if only you will try this one thing. I cannot say that, and if I did it would be a lie. There is no magic bullet.
Still there are several bullets to try. It is a safe bet that your doctor suggested Humaria, it is a a leading early use biologic medication. It works well for many but not all. To that end there are several different RA medications. I have used 5 and when the right one is found it is amazing. but as you know you must give it time to work. In my case my docotr insisted on one year. For others it is less, but your rheumatologist will help make that decision.
I also caution that it is important to be as open to trying things as possible. I would suggest trying a different pain doctor and instead of telling them what you have tired, ask instead how their solution might work better than what you are doing at present. One can never know exactly how things will work out in combination with new therapies. I have found that trying thing twice sometimes works out.
I hope you will find the best outcome. I know this is awful but I know just as much it will be better.
rick - moderator
Rick
Thanks . I needed to be reminded this will be a long process of trial and error. I just wanted to hear if the trial and error is worth it, and when do you stop searching and just accept. I will talk to my Drs again. Thank you for your time in responding.
Hi!
I just wanted to share that your expectations are not too high because you have a right to have expectations, but know that dealing with RA can be a roller coaster event. So sometimes setting expectations on your body can cause some stress to come up because certain goals aren’t being met. Finding out your RA management groove sometimes take time or even some changing up as time goes on. Continue to be patient with your body! All of our experiences with RA is different, and I am happy to hear that you have the drive to feel better😀
