1. < Autoimmune Diseases

Rheumatoid Arthritis (RA) - Introduce yourself and meet others

Posted by Kanaaz Pereira, Connect Moderator @kanaazpereira, Mar 30, 2017

Let's talk about living with rheumatoid arthritis.
As moderator of the Autoimmune Diseases group, I noticed that several people were talking about RA, but those conversations were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Let’s grab a cup of tea, or beverage of choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

fighter | @fighter | Aug 13, 2020
In reply to @sasilla "Hello: My Grandmother, mother, sister and myself have arthritis RA and i have been waiting for..." + (show)
@sasilla

Hello: My Grandmother, mother, sister and myself have arthritis RA and i have been waiting for a group to join. All are dead but myself so I would like to learn more from others on this group. Thank you

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RA Warrior is a great place to get correct information.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 13, 2020
In reply to @sasilla "Hello: My Grandmother, mother, sister and myself have arthritis RA and i have been waiting for..." + (show)
@sasilla

Hello: My Grandmother, mother, sister and myself have arthritis RA and i have been waiting for a group to join. All are dead but myself so I would like to learn more from others on this group. Thank you

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Hi @ sasilla and welcome to MayoClinicConnect. We’re all volunteers who share advice and helpful info on our different medical conditions. I’ll try to get @sueinmn to join us as she has RA. I have a different autoimmune disease so can’t help with any details.
Have you seen a rheumatologist yet? Tell us a little more about you and what’s going on.

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susandenise | @susandenise | Aug 13, 2020
In reply to @fighter "RA Warrior is a great place to get correct information." + (show)
@fighter

RA Warrior is a great place to get correct information.

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Thank you

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ellens | @ellens | Aug 13, 2020
In reply to @susandenise "I also use CBD tincture under the tongue. I don’t spit it out. I swallow it..." + (show)
@susandenise

I also use CBD tincture under the tongue. I don’t spit it out. I swallow it and within minutes I feel less pain. ( tastes like grassy dirt) I found a better option for me is the 3000 mg. Gummies. It’s like a little snack with pain relief. I smoke with a bubbler to make “ less” harsh on my lungs the CBD industrial grown hemp at any reputable CBD store. I live downstate Ny and we have a CBD clinic in the area. The CBD really helps. My doc recommended smoking marijuana but that’s not me... I don’t want to be high I want relief. My doc also tried to put me on that methodextrate and prednisone, told me I will never get better the RA will eventually kill me as my organs succumb. The chemicals in both those drugs are killers themselves... so I decided I’m staying on the CBD route and let my RA destroy my body little by little. Doc says I have about 10 years if I’m lucky ( just to live) in that time I will lose my motor skills, etc. try the CBD load up on it. Take the highest dosage which is 300 mg. It really does help. Capsules are even stronger.

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Thanks for the lessons on using CBD. I have a little but haven't used it much. One other thing I have is cannibis tincture which is consumed, not smoked. Cannibis is supposed to be anti-inflammatory. I'll try your suggestions. We have gummies here in MN but nothing available yet where I live. I bet I could send for gummies 3000 mg--I sent for the CBD.

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ellens | @ellens | Aug 13, 2020
In reply to @kozlo52 "ellens, the usual efffect on the body is high liver enzymes. This is an old chemtherapy..." + (show)
@kozlo52

ellens, the usual efffect on the body is high liver enzymes. This is an old chemtherapy drug from the 1940's. iwas on it for a few weaks and my liver enzymes (all 3 ) were highly out of spec. i would be interested in the surgeries on both feet and right hand. my feet are always sore on the bottom (feels like gravel when i walk on them. something you may want to consider is CBD oil. it has no THC so you will not get high. it is taken under the tongue and held there for 60 seconds , and then spit out. i usually then swish around in the mouth for 2 times and then do a honey swish to eliminate any taste of CBD. there are days when i will take 10 drops under the tongue and it does help a little ease RA pain. i have been battling RA for 31 years. My side effects from RA meds were bad rashes, stomach pain, torn retinas in both eyes, failed kidneys. Kidneys have been back to normal and after 2 retina operations, 2 cataract operations, my eyes are almost back to normal......kozlo52... god bless and good luck!

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Thanks for your answer. The first two (of 10) surgeries on my feet were for bunions, and they did feel like I was walking on stones. I have had 3 nodules on the bottoms of my feet. That felt like walking on stones too. Easy to get them removed. My right hand wouldn't open and my ring finger was dropping down. I found an orthopedic Dr who specializes in the upper body and that includes hands. He replaced all the knuckles between the fingers and hand (I think that all the replaced stuff is connected) with plastic knuckles. My hand is still kind of stiff but I can straighten out all may fingers that are still trying to slant to the outside. I'm satisfied with that for now. I have some CBD and homemade cannabis tincture. Due to the COVID-19 I chose to go off of methotrexate and told my rheumatologist that I'd see him again after I get vaccinated. I hate messing with my immune system since no one really know what is the cause of the so-called autoimmune conditions. I need to get on the stick and take my CBD/cannabis. Diagnosed w/RA in 2001.

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susandenise | @susandenise | Aug 14, 2020
In reply to @ellens "Thanks for your answer. The first two (of 10) surgeries on my feet were for bunions,..." + (show)
@ellens

Thanks for your answer. The first two (of 10) surgeries on my feet were for bunions, and they did feel like I was walking on stones. I have had 3 nodules on the bottoms of my feet. That felt like walking on stones too. Easy to get them removed. My right hand wouldn't open and my ring finger was dropping down. I found an orthopedic Dr who specializes in the upper body and that includes hands. He replaced all the knuckles between the fingers and hand (I think that all the replaced stuff is connected) with plastic knuckles. My hand is still kind of stiff but I can straighten out all may fingers that are still trying to slant to the outside. I'm satisfied with that for now. I have some CBD and homemade cannabis tincture. Due to the COVID-19 I chose to go off of methotrexate and told my rheumatologist that I'd see him again after I get vaccinated. I hate messing with my immune system since no one really know what is the cause of the so-called autoimmune conditions. I need to get on the stick and take my CBD/cannabis. Diagnosed w/RA in 2001.

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Agreed!

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susandenise | @susandenise | Aug 14, 2020
In reply to @ellens "Thanks for the lessons on using CBD. I have a little but haven't used it much...." + (show)
@ellens

Thanks for the lessons on using CBD. I have a little but haven't used it much. One other thing I have is cannibis tincture which is consumed, not smoked. Cannibis is supposed to be anti-inflammatory. I'll try your suggestions. We have gummies here in MN but nothing available yet where I live. I bet I could send for gummies 3000 mg--I sent for the CBD.

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Google “ upstate CBD clinic. Lots of CBD salves, oils, creams, chapstick, vitamin CBD water and sodas. Plus hemp
Infused CBD flower. They take orders from text and will mail to you for 5.99$. Their products are fantastic. A bit pricey but for the quality it’s worth it.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 14, 2020

@sasilla Hi, as Becky said, I have RA and OA as well as asthma & bronchiectasis - I am also at least 4th gen with arthritis, and have lived with it a long time. I always remember what my Mom's rheumatologist told her years ago - "Motion is lotion." So I keep moving every day. I find that if I take even one day "off" and do nothing, it takes me 2 days to get everything moving.

I had to stop all NSAIDS & arthritis meds due to severe stomach issues and irregularities in my bloodwork, so am seeing a pain management doc, taking a nerve blocking med, and seeing a wonderful PT weekly. I was already doing stretching & walking, but Mr Magic has found the "locked" spots in my spine and between his osteopathic manipulations and specially targeted stretches & exercises, I am making great progress.

Now when I get up in the morning, even before dressing & eating, I drop to the pad on my bedroom floor and do a 10 minute series of progressive stretching the relieves a lot of the morning stiffness and pain. I repeat those, plus another series of targeted exercises later in the day, and before bed I do two specific stretching/relaxation exercises. Relieving the pain has also lifted some of the depression and anxiety that I was experiencing.

I wish you well in your journey, and encourage you to find a PT who deals with RA and chronic pain.
Sue

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ellens | @ellens | Aug 14, 2020

What med is a "nerve-blocking med"? By the way, I have had 2 gastric bleeds that almost killed me so I never come within 10 ft of an NSAID.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 15, 2020
In reply to @ellens "What med is a "nerve-blocking med"? By the way, I have had 2 gastric bleeds that..." + (show)
@ellens

What med is a "nerve-blocking med"? By the way, I have had 2 gastric bleeds that almost killed me so I never come within 10 ft of an NSAID.

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It is a medication used by my pain management specialist to block the pain feedback from now hyper-sensitive nerves. There are many available, she prescribes based on complete medical history, and does a "step up" therapy in a specific sequence to find what works for each patient. For that reason I do not name the specific medication I am taking - this needs to be tailored to each individual person. The medication is used in conjunction with specifically regular consultation, tailored PT and an exercise program. She insists that her patients fully participate in all phases - regular appointments (mine are video right now), meds, PT & exercise - in order to stay with her practice.

If you have chronic pain, cannot use NSAIDS, and want to avoid opiods, I recommend getting referred to a pain management specialist for help.

Sue

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