Managing pain and failing biological agents

[Rasux]

Hello all, I’m wondering if your management plan includes opioid pain management. I was diagnosed 5 yrs ago. I have worked through the baseline meds to four biological agents. I currently have gained a significant amount of weight and my cholesterol and blood pressure has become elivated, during this last month of use with Actemra so not sure how this will impact my continued use.

I have always used pain management past a year of being strictly against them. I decided that having a greater sense of well being and comfort was needed. I lost my rheumatologist whom had originally suggested that I look at accepting pain management with opioids. My new doc is very against them. And is very upset that I continue to use them. I fear that I will lose my quality of life if I try again to not have them in my arsinal it treatment if my other medicine isn’t working well. I cannot tolerate large doses of steroids anymore. And seemingly my body is against the meds to target disease control. I’m feeling very hopeless in finding a medicine that’s going to keep my pain away. I don’t enjoy relying on medication but yet it allows me to be more active. As a mother and 34 year old I want to be living my life not throwing up in pain.

I guess my question is am I the only one who feels that pain management is important? And do you take pain medication? Is there anyone out there who had “failed” all of these other drugs to keep the ra away? I feel like I’m running out of options. My doctor looks at me like I’m being selfish for wanting to have control of my pain the best I can. God give me a time I don’t need to manage it and I’ll throw all medicine away! I hate the way opioids feel and they make me sick feeling even after years of use. I’ve never raised my dose and refused to move to stronger ones. I just don’t like them. But I accept that they help me be more comfortable. My life was horrid before I managed my pain, my rheumy at the time looked me in the eye and said “listen, your in extreme pain! You need to treat it” so I did and I felt less anxious having more control and was able to be more active!

So I guess I hope to find a medacine the eliminates my need to control pain; but Until then I want to be able to live semi comfortably in my own skin. Am I alone?

Just feeling frustrated and alone.

Secondly , I feel that if this med already made my cholesterol increase to moderate and I’m 34 I’m really uncomfortable taking Stats. They’re tough on the body, and I’m too young to think that’s a life long cure. I eat well, I try and exercise as much as I can. I am active. But when exercise takes out the next two days it’s hard to keep going.

Does anyone have any suggestions? Yoga is good but many poses hurt my hands too much to hold and the dancing is hard on my feet. How do you manage your weight and how do you manage pain?

Thanks for listening

[Hessie5]

Hi Rasux, it really is a journey finding that right potion. I am still searching as all the meds and biologics are failing. I am starting yet another one next week sometime. It has been tough and makes me unintentionally grouchy too as the sheer pain bellows through my feet most days. 😩

For pain:

I am on prednisone for now it does takes the edge of the pain, but gosh do you notice when you don’t take it!

I also try to relax. I stretch and walk - without overdoing it. I have set myself a challenge to do the plank everyday!

My weight:

I am the opposite and my weight has plummeted to a size 8 (even 6). I can’t bear to look at myself in the mirror as no fat 😕.

I did change my eating to no bread no pasta - but looking to add the pounds not take away - this is my challenge.

I sincerely hope you find the potion that works - don't give up! And trust me you are not alone. Take care of you 🤗 Hessie x

[Simba1992 in reply to Hessie5]

Have you eliminated dairy and eggs as well?What carbs are you eating, you know you really need them too.

[Rasux in reply to Simba1992]

i have not eliminated really anything. i cannot afford at this point to purchase alot of additional items, we have a very limited income and i have a household to feed, they are all good eaters and i do most of my own cooking and baking. i do buy high quality foods and generaly make my own bread that doesnt seem to upset my stomach. i am looking to stop easting as many carbs, but its hard.

[Simba1992 in reply to Rasux]

I was more thinking of why you have lost weight. Eggs and dairy give good proteins and calories.These helped me when I lost a lot a weight eliminating gluten. More good carbs help as well.

[Rasux in reply to Simba1992]

Oops. No I’m gaining! So so much

[Hessie5 in reply to Simba1992]

Hi Simba - i personally eliminated all dairy and eggs too. I eat lots of potatoes. I need to increase my protein. Take care.

[Simba1992 in reply to Hessie5]

Adding gelatine powder gives good proteins as well.Helped me a lot. Great Lakes hydrolate powder easy to use and clean. Does decrease inflammation as well.

[Hessie5 in reply to Simba1992]

Simba you’re a star, going to order that now! Thank you.

[Simba1992 in reply to Hessie5]

Good luck! Start with 1-1\2 tbs dose and increase after a week and gradually get up to 4-6tbs daily mixed in anything disolves in warm and cold. You will be surprised how much it helps with quality of sleep as well.😊

[oldtimer]

to take your last point first: it might be worth discussing this with a physiotherapist to get the balance right. I do mainly aquafit as I find that exercise in the water is so beneficial for me. Otherwise I walk and do (gentle) international and circle dancing. You need a mix of aerobic exercise for your cardiovascular system and other exercise for flexibility and strength. Walking on uneven ground is supposed to help with bone strength too. But you would have to do an awful lot of exercise to reduce weight gain unfortunately - that's best tackled by a good mixed diet in smaller amounts!

But you can't take exercise if you are in too much pain...or do much else to be honest! So pain relief is really important, and taken regularly, so that the pain gates on your nervous system aren't kept open by long term pain.

Inexperienced doctors often have fears about people becoming addicted to pain medication - but it has been shown that most people drop down their medication as soon as they don't need it.

[AgedCrone]

Have you asked to be referred to a pain management clinic......maybe you could have a word with your rheumatologist & see if he thinks it might help?

All the time you are in such pain you are presumably stressed & that raises your BP,& makes you feel out of control..do ask ...I know it's hard to ask for yet another doctor, but hopefully you could get some help!

If your medics have suggested Statins..for what it's worth I have been taking them for 30 years with no ill effects at all.

[Rasux]

Thank you all.

[nablur]

I am a firm believer in pain management and incorporate lots of things from Pain Program with my daily life.

[Hidden]

Hi Rasux, I’ve had RA for 22yrs and been on lots of biologics, damards , anti tnf treatments, also steroids. I think keeping your pains at bay is MOST important. Not all meds

stop the pain and I think finding a balance between stopping the deformities and alleviating pain is the best for me. I certainly could not function at all without daily paracetamol and Tramadol, even morphine when it gets tough!! and I think that we all need and deserve a better quality of life! My motto is “quality not quantity” with this rotten disease so no your NOT ALONE but don’t lose faith as there are always new meds on the horizon.

Don’t worry about your weight at the moment! I’m sure your doing all you can to keep it down, but unfortunately some meds can cause weight gain and there’s nothing we can do about it, as long as your pain free you can be more mobile but try not to overdo it, listen to your body.

Take care 🤗 X

[Rasux]

I wish I was in control of my pain enough to exercise. But I can’t. I walk daily. Used to ride everyday; but now can’t because of the weather. Riding actually is the kindess to my body. Mostly due to muscle memory I think. It takes me very little to ride well and I don’t have to think about it. As I did it for so long before I came I’ll.

[Simba1992 in reply to Rasux]

Riding is such good excersize not only for body but also soul. I do envy you, I used to do a lot of riding, was my passion. Unfortunately when fell ill didn't have a horse of my own and at the time was too much of a project so now it feels it's too late with the bodily changes caused by RA