Sorry to hear you are having pain issues. Is the pain related to active RA flares, RA damage or fibromyalgia? I ask, because pain can come from all three.

Pain meds are never the way to go, except as a stop gap, or if you have exhausted every possible med. narcotics work less, the more you use them I'm not saying your pain isn't bad, but your doctor may see you as a drug seeker, because it is possible to get addicted to prescription pain meds.

If you are having active flares, then maybe Humira isn't working well enough. It would be a time to ask for a new biologic. If it is damage, time to get exercising. Stretching and strengthening help tremendously to keep the joints strong and aligned, despite damage. It is hard to start, but gentle stretches and light weights, and aerobics like walking, swimming or bicycling are good low impact activities.

You didn't say if you are on anything for fibromyalgia. I take Gabapentin 3 times a day, and have little pain. There are several other drugs than can help with it.

Sorry to hear you are suffering, but do look beyond pain meds. I lay in bed for the first 8 years of this disease. No one told me to get on better meds. When I finally complained to my rheumatologist, he put me on a biologic, and my whole world changed. But it did require pushing myself to start with a few leg lifts on the bed, and riding that exercise bike in the basement for one minute, the first times! Eventually I got up to thinking in hours of cycling, and 30-35 km.

Let us know more about your conditions! I'm just taking some stabs in the dark. And welcome to the group, if not RA.

Thank you for replying. I swim everyday. I take lyrica twice a day for the fibromyalgia. I'm not a drug seeker, so that's clear. And my doctor doesn't see me as that, he doesn't like my insurance because it's welfare that's what his problem is. I am disabled and on SSI. I'm only 90lb. My strength in my hands are gone so weights is out of the question. I'm also epileptic and had brain surgery because of a subdermal hematoma with a midline shift to the brain. I have a number of health problems but the RA. Affects my body in ways no one understands. I have tried CBD oil and natural pain relief things other than narcotics and found they don't do anything for me. So I've always went back to the pain meds. Anyways now that is all cleared up.

Okay, the fact that you're still functional at all is kind of amazing, with all you have on your plate. You are sure dealing with a lot of challenges. I'm assuming the 'mask' in your online name must be a superhero mask. I haven't any magical answers for you, but I'd like to suggest that you try placing an ad on Craigslist or Facebook, or possibly working through an outreach program at a church - whatever feels comfortable for you - to find some support on the island. Maybe you can be the catalyst for getting a support group in place.

Most days I'm not functional, especially when I have flare ups. but I push my body to the limits . But when I know I have a flare up and can't walk or lift my hands above my head to wash my own hair or get dressed that's when I have to go really easy and I can't even open jars anymore which was a big eye opener and depressing. I usually have to get cortisone shots in my joints that are flared and my hip has a tare in it and my knee caps are off the bone so joint replacement is in the future I'm just scared to get them done . Has anyone else had there joints replaced? I always have been independent so asking my daughter to help me with things is hard for me but we manage just fine. I don't like people seeing me weak so I am strong and faithful in the WORD. I'm a single mom and my daughter needs me. :-) we do go to church and read our bible every night. We pray to God and I also go to healings in my church. Thank you for your input I appreciate it. I have all my bases covered atleast I try too. God bless all of you who take the time to read my posts and also post your thoughts.i am grateful for that:-)

Oh.. the mask in my name is not super hero related... it's just because it's covering and masking my RA. Among other things. Ha... I was a RN and had to quit my job because I could no longer work and my doctor that passed away helped me get SSI. So not being able to work anymore due to my RA was like a slap in the face. Being told by your doctor that you can't work anymore and coming to the realization that it's true is a bummer... but it's okay. IT IS WHAT IT IS. So you just deal with life's curve balls. I have good days and bad days so I make the mist out of my good days and I take care of myself on the bad days. Take care and God bless.

you sound like a wonder woman to me. congrats on all you have done while hanging in with what is on your plate medically. is your daughter close to launching (work college whatnot)? if so that's another kudos.

welcome

depot

My daughter will be 11. But she is knowledgeable beyond her years. I say that because she reads encyclopedias and is a math wiz. She wants to be an engineer. Also she knows all about my medical issues and she knows what to do if I have a seizure and is very strong .. like me. She is my mini me:-) we are very close. We are all each other have in this world. Two peas in a pod. God blessed me. I also had cervical cancer last year . I had a total hysterectomy at 32 and went through radiation. But I have been cancer free for a year. :-) I feel like God wants me here to be her mommy and if all I can give her in this life is the Word of God and Jesus Christ and we have been baptized than I have served my purpose. Thank you for the kind words I am grateful :-)

Hey there. I am 100% with you on the RA and Fibro. Everyday i am in pain. I too take humera every 2 weeks and vicoden every 6 to 8 hours every day. Some days are better then others. I truly feel you need to find another doctor. Its hard enough trying to live with the frustrations of chronic pain, you shouldn't have a doc that treats you badly. Find a new doc immediately!!!! And if there are no support groups then why not start one?

I had weightloss surgery in 2012. And since then i was diagnosed with RA and fibro. And there are days i fight through the pain and depression. Like i had surgery to improve and save my life. I wanted to learn to surf and do a mini marathon. None of which i can do now bc of my physical limits and and chronic pain. So i totally get the depression you feel. Talk to us anytime and remember today is a new day and hopefully a better one. Xoxo

Your RA is not under control, if you cannot lift your hands over your head. You need to get on a different biologic, and preferably in combo with a DMARD, as they do more together than if you just added it up.

Please demand new meds. I let myself be in that state for too many years, because I didn't know any better. Let us know what new biologic you try.

DITTO. And I hope you find another doctor, and soon!

NO!!!! There are numerous reasons why you can't lift your arms over your head, beyond RA not being under control. Don't be playing doctor, Marlene. I would love to connect with you again, but you just can't help yourself about dispensing medical advice. I can't lift my hands over my head, but it's due to severe rotator cuff injuries. Let's connect again, when it's not confrontational. I am seeking PT tomorrow, because my cervical spine is messed up, and nerves are impinged, and I have problems with my shoulders.. It affects FUNCTION. Not RA, not RS not under control. The world is bigger than your eyes!

i have a cervical neurosurgeon who diagnoses and changes in my neck (mri/consultation/testing function) since I had a fusion at C 5 and have a plate and screw. sometimes your rheumatologist will farm you out to an orthopedic or a neurosurgeon if its messy. all the years of RA meds have not stopped the cervical degeneration, for me. i think the surgery was pretty successful. i put it off for years and years and years (and years and years - decades area) until I had the emergency (loss of left arm use). I got function back in that arm after the surgery. i do not bother with PT so much anymore in the neck area but I own both a heated wet hydroculator pad and a freezer gel soft pack. i mimic pt treatments at home. you know what I additionally like best is the hospital heated arthritis pool. something like what 106 degrees.

good luck buddha with your consult.

depot

You have to fight! I found out I had RA few years back, I'm an aircraft mechanic, and was 36 years old when I found out.(42 now) ..so kind of a mood killer to find out my body was attacking itself causing pain and causing me to not be effective at my job I love. I can't live on pain meds...with that being said I quit smoking (I cape now)..smoking was a part of my life I could stop and some of my inflammations slowed down, also there are many natural anti-inflams and natural pain foods...here is my short list
Kale, ginger, Hot peppers, B12, drink lots of water, I have more to add later when I have more time to respond, but the most important....DONT give up!! You need to push back at ur body and tell it NO that you won't be beat!!
whalejetwrench
whalejetwrench 06/16/2017
Okay to continue...things to eat.. prickly pear (cactus fruit), pineapple, tumeric. ..

Things that set me off into pain..tomatoes, pizza,ketchup, pasta sauce, smoking...

Also my symptoms started when I started working nightshift and being less active, melatonin production and inflammation go hand in hand, so I try to sleep no more than approx 5-7 hrs Dailey and then get out and do stuff! Stay moving, pain killers slow you down and can add to depressed mood hence continues the cycle! I don't know everything and it's not like you can just eat a couple things and feel better, you have to stay strong and fight it daily

Good consult, depot. She'll focus on areas below my neck (trapezius, rotator cuff muscles) and ROM. Also erector spinae muscles. With care and light touch.

lady - i can't function on narcotics and they are not dispensed at my ra practice or at my pain management practice. I have had pt in a heated pool by script. not bad. and I have had steroid injections over the years and years by a pain management person into my body as pin cushion. sometimes helpful sometimes not. check your local meet up for an auto immune support group that would be in person, also. i go to one. it aint bad.

jet wrench welcome - glad you are finding your way.

buddha - sounds like you are headed off to PT. if so, have fun and give everyone a wicked hard time. buy a hydroculator from them. and the pad. i use that at home. makes a difference. .

depot