Welcome to the
Rheumatoid Arthritis Connect Group
Rheumatoid Arthritis
825 Members
This online group serves the members of our arthritis community who are living with rheumatoid arthritis from across the country. We invite those who are looking for support, education, robust programming, expert speakers, and connection to join us and meet others who understand.
Live Yes! Connect Groups offer connections, education, and empowerment. Adults living with arthritis from across the country come together online for professional- and volunteer-led sessions on topics, as well as fun group activities.
We offer a place of understanding and encouragement for both people living with arthritis and their loved ones. Group participants become self-advocates, develop self-management skills, and learn how to not just survive life with arthritis but to thrive.
Upcoming Events
-
Tuesday, June 11th, 20248:00 PM ET2h
-
Virtual Event
- 100 people attending
We are delighted to welcome Cindy Senk for a “Yoga for Arthritis” experience. Yoga is gentle and therapeutic movements specifically designed to alleviate joint pain and stiffness. Cindy will guide you through a series of accessible yoga poses and mindful breathing techniques, promoting flexibility, strength, and overall well-being for those managing arthritis. Cindy is a fellow warrior and will share the benefits and tailoring a practice to meet your needs even on days when movement is limited. Discover a supportive and inclusive environment tailored to enhance your physical and mental health on your journey to greater mobility. Yoga for Arthritis is an evidence-based program developed at Johns Hopkins that was sponsored by the Arthritis Foundation. Chair and mat options will be offered. You may want to have handy a blanket or covering for relaxation...a belt, yoga strap, or towel might be helpful as well.
Cindy Senk M.ED in Rehabilitation, E-RYT 200, Yoga for Arthritis Instructor, ACCESSIBLE YOGA TEACHER CERTIFIED, ACSM (American College of Sports Medicine) Certified Personal Trainer, and AFAA (Aerobics Fitness Association of America) certified exercise instructor both land and aquatics, Arthritis Foundation Certified Land and Water Instructor, Owner-MOVEMENT FOR ALL, over 40 years experience in the Fitness industry, 20 years teaching Mat and Chair Yoga, Walk with Ease coach, Pilates instructor, Active Older Adults exercise specialist. She has also presented Fitness workshops and programs nationally for AFAA (Aerobics Fitness Association of America), USWFA (United States Water Fitness Association), the Arthritis Foundation, Leading Age, and ICAA (International Council of Active Aging). Cindy is is on faculty at the World Instructor Training School and teach personal training certification courses, and an Adjunct Professor at Manchester Community College in the Health & Exercise Science Program. She is part of the Medical Fitness Network and specialize in chronic illness and injury program design and intervention. Cindy has volunteered with the Arthritis Foundation for over 20 years. She is a patient with osteoarthritis and Sjogren's.
After our presentation, there will be time to connect with others. Friends, Family, and Care Partners are always welcome to join meetings.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor having a Zoom account. A confirmation email will be sent upon registration with the Zoom link. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.
We look forward to seeing you soon!
- Event List
-
Tuesday, June 11th, 20248:00 PM ET2h
-
Virtual Event
- 100 people attending
We are delighted to welcome Cindy Senk for a “Yoga for Arthritis” experience. Yoga is gentle and therapeutic movements specifically designed to alleviate joint pain and stiffness. Cindy will guide you through a series of accessible yoga poses and mindful breathing techniques, promoting flexibility, strength, and overall well-being for those managing arthritis. Cindy is a fellow warrior and will share the benefits and tailoring a practice to meet your needs even on days when movement is limited. Discover a supportive and inclusive environment tailored to enhance your physical and mental health on your journey to greater mobility. Yoga for Arthritis is an evidence-based program developed at Johns Hopkins that was sponsored by the Arthritis Foundation. Chair and mat options will be offered. You may want to have handy a blanket or covering for relaxation...a belt, yoga strap, or towel might be helpful as well.
Cindy Senk M.ED in Rehabilitation, E-RYT 200, Yoga for Arthritis Instructor, ACCESSIBLE YOGA TEACHER CERTIFIED, ACSM (American College of Sports Medicine) Certified Personal Trainer, and AFAA (Aerobics Fitness Association of America) certified exercise instructor both land and aquatics, Arthritis Foundation Certified Land and Water Instructor, Owner-MOVEMENT FOR ALL, over 40 years experience in the Fitness industry, 20 years teaching Mat and Chair Yoga, Walk with Ease coach, Pilates instructor, Active Older Adults exercise specialist. She has also presented Fitness workshops and programs nationally for AFAA (Aerobics Fitness Association of America), USWFA (United States Water Fitness Association), the Arthritis Foundation, Leading Age, and ICAA (International Council of Active Aging). Cindy is is on faculty at the World Instructor Training School and teach personal training certification courses, and an Adjunct Professor at Manchester Community College in the Health & Exercise Science Program. She is part of the Medical Fitness Network and specialize in chronic illness and injury program design and intervention. Cindy has volunteered with the Arthritis Foundation for over 20 years. She is a patient with osteoarthritis and Sjogren's.
After our presentation, there will be time to connect with others. Friends, Family, and Care Partners are always welcome to join meetings.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor having a Zoom account. A confirmation email will be sent upon registration with the Zoom link. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.
We look forward to seeing you soon!
Facilitators [3]
Members [825]
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Connect Group - National - Rheumatoid Arthritis
Comment
Comments [73]
I am newly diagnosed (Jan 2024) with RA. I have been dealing with degenerative disc disease and arthritis in my lumbosacral spine for several years now. I am finding the joint pain situation to be pretty straight forward, but I am wondering about the autoimmune symptoms such as fever, all over discomfort and fatigue, and chills. I get these little spells only occasionally, though they seem to come in spurts. They are usually early evening. I'll feel fatigued, chilled, but slightly warm like a tiny fever. I have not been ill, no other typical illness symptoms.
Has anyone else dealt with this? I don't know if I can attribute it to RA autoimmune or if it's a fluke.
Hi everyone,
I was diagnosed with RA about 10 years ago (at 19) but didn't take it all that seriously when I was in college. I was prescribed hydroxychloroquine at first but then moved to methotrexate but didn't take either consistently. It wasn't until a very severe flare this past Oct-Dec that I started taking it more seriously and have been on methotrexate since then. I have also begun getting more into creating a healthy lifestyle (less drinking (as you really can't on methotrexate), more excercising/walking, cooking, etc) and was wondering if anyone has seen a decrease in pain/stiffness with certain types of exercise? Has anyone seen success with low-impact workouts or yoga? Also, I currently live in Washington DC if anyone wants to meet up in person! Would love to bring this support group into the real world.
Elspeth
Hi I find relief and better sleep with yoga.
Hi Espeth,
I'm Jessica I'm 28 years old and was diagnosed when I was 24. I also didn't take my diagnoses too seriously at first and wasn't very consistent with taking hydroxychloroquine. This past December I was in so much pain that I lost my ability to do everyday life activities and I began removing red meat, alcohol, and gluten from my diet and saw a relief in stiffness. I also began taking sulfrasalazine and it's been making me feel better. I've gain my mobility back and have been able to start exercising again. I find that going on walks and strength training exercises have been really helpful in maintaining my strength and reducing flare ups. It's quite a journey though, I recently switched health care providers and my new rheumatologist says I am being under medicated and would like me to start methotrexate. I haven't started it yet but I'm very nervous to get started since I'm finally feeling doing better. I am excited to join this group and learn more about others stories and support one any. I am located in California and would also love to connect with people!
Are there any folks in this group that had lymphoma that is in remission, and then later was diagnosed and treated for RA? If so, I'd sincerely like to connect for a 1:1. Would be great to learn what you were prescribed for treatment.
BACKGROUND: I'm 61 years old and was diagnosed with RA (Seronegative) in March. 15 years ago I had Non-Hodgkins Lymphoma and underwent 8 rounds of chemo "R-CHOP" (The "R" is for Rituxan / Rituxan) and am in remission.
My Rheumatoligist wants to put me on Methotrexate (2.5 mg / 6 tabs once per week. Plus Folic Acid 1 mg/day to help with side effects).
My Oncologist does NOT want me on Methotrexate, because of the potential side effect of causing lymphoma (even though it is a low probability, because I had lymphoma, there is a greater chance I could get it again.
I am taking 10 mg prednisone / day which is controlling the majority of symptoms / pain. (Along with several supplements)
Thank you
Hello! I'm Lacey and I'm 38 years old. I was diagnosed with RA, PsA, and Fibromyalgia around 10 years ago. It's been a struggle. I'm currently taking amjevita, prednisone, and nabumtone. The combination helps quite a bit but I still have flares. I'm glad I found a group with other people who understand what I'm going through.
Hello! I'm Lacey and I'm 38 years old. I was diagnosed with RA, PsA, and Fibromyalgia around 10 years ago. It's been a struggle. I'm currently taking amjevita, prednisone, and nabumtone. The combination helps quite a bit but I still have flares. I'm glad I found a group with other people who understand what I'm going through.
Thank you everyone who has signed up for our next meeting for the Rheumatoid Arthritis Live Yes! Connect group happening on 4/6/24. Please submit questions via this link (https://linkprotect.cudasvc.com/url?a=https%3a%2f%2fforms.office.com%2fr%2fgpKWMDb94N&c=E,1,M_7inolxtgZhYkmvEMT_KzOk9zjT1Q2WFF1a1t9UX5XKz-VSNLdxDN88PZMtzFMENZDjfaBXj0z3POk_8VQbwF9n240Qk6aaVXAlqwTYnjLXDhlG-jUP&typo=1)
by no later than 3/28 to be considered for this session.
If you have not signed up, there is still time. We will be continuing our series on relationships and will be speaking about how to tell family about your disease, how to speak with friends and coworkers. We will have a social worker and a panel consisting of family of those living with RA and a Human Resources professional.
Can’t wait to see you on Zoom!
Thank you everyone who has signed up for our next meeting for the Rheumatoid Arthritis Live Yes! Connect group happening on 4/6/24. Please submit questions via this link (https://linkprotect.cudasvc.com/url?a=https%3a%2f%2fforms.office.com%2fr%2fgpKWMDb94N&c=E,1,M_7inolxtgZhYkmvEMT_KzOk9zjT1Q2WFF1a1t9UX5XKz-VSNLdxDN88PZMtzFMENZDjfaBXj0z3POk_8VQbwF9n240Qk6aaVXAlqwTYnjLXDhlG-jUP&typo=1)
by no later than 3/28 to be considered for this session.
If you have not signed up, there is still time. We will be continuing our series on relationships and will be speaking about how to tell family about your disease, how to speak with friends and coworkers. We will have a social worker and a panel consisting of family of those living with RA and a Human Resources professional.
Can’t wait to see you on Zoom!
Hi I am Jalissa, I was diagnosed with RA when I was about 23 or 24. I am now 26 soon to be 27. I have just started research on the disease and have learned a lot. I am currently on hydroxyclorquine and I have found it to be helpful however, I still find it difficult to do some of the tasks I have at work which include standing in one position for a long period of time or doing a lot of excessive movement. I was wondering if anyone had any suggestions? I am have also joined so I can learn more about what to expect in the future when the RA progresses and also just to have the support of others living with this disease.
I would personally ask your rheumatologist about an injectable. It's done wonders for me. I still get flares but they aren't nearly as bad.
Hi I am Jalissa, I was diagnosed with RA when I was about 23 or 24. I am now 26 soon to be 27. I have just started research on the disease and have learned a lot. I am currently on hydroxyclorquine and I have found it to be helpful however, I still find it difficult to do some of the tasks I have at work which include standing in one position for a long period of time or doing a lot of excessive movement. I was wondering if anyone had any suggestions? I am have also joined so I can learn more about what to expect in the future when the RA progresses and also just to have the support of others living with this disease.
I'm considering joint replacement surgery for my MCPs on my right hand, and at the same time, repair of the tendons on that hand to correct ulnar deviation. I would like to chat with, or read articles/experiences written by people who have had this procedure. Where should I start looking for these conversations and inputs?
Hello,
I had to discontinue methotrexate after five months due to adverse side effects. For the last four months, I have been on no medication, but I am experiencing some discomfort for which I am taking acetaminophen. Is anyone else attempting to address their RA without the use of prescribed medications and only OTC pain relief? Thank you.
Martin
Oh, that is an eye opening way of looking at it. Thank you for that perspective.
Hi Martin, I am newly diagnosed (Jan 2024). I had one flare that seemed to correct itself without meds (my rheum scratched her head on that) so I decided to hold off on Rx meds until the next one in case it may be a long time between flares. I have been using heat, gentle stretches for the stiffness, and tylenol. So far it has been in my right wrist the worst for actual pain and discomfort when it does hurt, but I've been able to manage pretty well with OTC remedies.
I'm very new to this, so I don't have much to compare to. I'm a less-is-more person when it comes to drugs but if it gets to the point of interfering in life or being much more uncomfortable than it is, I will take the plunge.
I have heard stories of multiple people not getting the inflammation down by either not taking meds or not being consistent. If your body is in paint and your joints are inflamed there is damage happening within your body that cannot be reversed. For myself, I am committed to staying on meds and changing them as needs to fight the inflammation as much as possible over the years so that it impacts my health as little as possible and work on what I eat, stress, sleep etc. if you are hurting your body is sending you a message.
Thank you Hillary for your reply. What I've done is to change my ritual in the morning when the discomfort is the worse. I now give myself an hour or so to drink coffee and get moving. I then do about a 15 minute yoga session and have been taking a dose of etra strength Excedrin one time each day along with 1000 mg of vitamin C. The vitamin C is supposed to extend the effect of acetominiphen, and so far it has helped me in that I become functional for the rest of the day with minimal and manageable pain. I am bound and determined to go as far as I can without prescription medication because the side effects scare me to death. I hope this helps you. Have you had any adverse effects from the Naproxen? Thanks.
Thank you Hillary for your reply. What I've done is to change my ritual in the morning when the discomfort is the worse. I now give myself an hour or so to drink coffee and get moving. I then do about a 15 minute yoga session and have been taking a dose of etra strength Excedrin one time each day along with 1000 mg of vitamin C. The vitamin C is supposed to extend the effect of acetominiphen, and so far it has helped me in that I become functional for the rest of the day with minimal and manageable pain. I am bound and determined to go as far as I can without prescription medication because the side effects scare me to death. I hope this helps you. Have you had any adverse effects from the Naproxen? Thanks.
Thank you Hillary for your reply. What I've done is to change my ritual in the morning when the discomfort is the worse. I now give myself an hour or so to drink coffee and get moving. I then do about a 15 minute yoga session and have been taking a dose of etra strength Excedrin one time each day along with 1000 mg of vitamin C. The vitamin C is supposed to extend the effect of acetominiphen, and so far it has helped me in that I become functional for the rest of the day with minimal and manageable pain. I am bound and determined to go as far as I can without prescription medication because the side effects scare me to death. I hope this helps you. Have you had any adverse effects from the Naproxen? Thanks.
I am. Naproxen is my life saver. But would love any other insight on managing without meds
Newbie here to this group and to exploring alternative therapies to heal RA. I'm currently doing protocol of Dr. Brooke Goldner who healed her autoimmune disease of lupus with hypernourishing plus doing low level light red light therapy along with other modalities. Open to hearing others experiences with alternatives - I'm not on any prescription drugs.
Hi Mary Ann M,
I just had my 60th birthday and diagnosed with RA. Prescribed the Metholtrxate injection once per week. A little scary, would love some encouragement.
Thank you!
Della
Hi Mary Ann M,
I just had my 60th birthday and diagnosed with RA. Prescribed the Metholtrxate injection once per week. A little scary, would love some encouragement.
Thank you!
Della
Hi Mary Ann M,
I just had my 60th birthday and diagnosed with RA. Prescribed the Metholtrxate injection once per week. A little scary, would love some encouragement.
Thank you!
Della
Hi Mary Ann M,
I just had my 60th birthday and diagnosed with RA. Prescribed the Metholtrxate injection once per week. A little scary, would love some encouragement.
Thank you!
Della
Hi Mary Ann M,
I just had my 60th birthday and diagnosed with RA. Prescribed the Metholtrxate injection once per week. A little scary, would love some encouragement.
Thank you!
Della
Hi Martin. I am Mary Ann and in my 60s. I would highly recommend that you get established with a good, board certified Rheumatologist. My pain is being managed well now with Metholtrexate (MTX). I get blood tests every three months to make sure it isn't having adverse side-effects on my organs. I am tolerating MTX well and it's allowing me to live relatively pain-free. Although RA is relentless, I am learning that there are things I can do to live with it in peace. Best wishes.
Hi Jan, just joined this group. I have struggled with seronegative RA for 18 years. To the average provider I look pretty healthy on the outside and my labs are negative. There was a day when I was in so much pain I prayed for God to just take me because I just could not function and live, I am on the upswing now. I've-seen 17 providers-3 of those were functional. I encourage you to find a functional medicine provider at ifm.org. I would say diet is a big one-gluten free and possible dairy free could help. I would suggest an elimination diet where you cut most foods and then slowly add them back in while writing down what your symptoms are. Cut processed foods (that's chips for me) and taking 5g of fish oil-liquid or pills per day seems to help me. Yoga and Cryotherapy also seems to help. I can't quite subject myself to cold plunges. i hope this helps you.
Hi Jan,
I’m a 70 year old recently diagnosed with RA. I’m trying many things – anti-inflammatory vitamins, stress reduction, and minimal OTC pain relief. I would really be interested in learning more about any other non-medication approaches for controlling RA. Thank you.
Martin
Hi everyone,
I'm new to this group. Looking for more support and connection with people who get it. I struggle with the invisible aspect of this disease, not wanting to complain, but need support.
I was diagnosed with RA at age 22, more than 30 years ago. I had good luck with Enbrel till Covid, now trying diet changes (gluten and dairy and sugar free as much as possible) and herbal stuff.
My New Year's resolution is to get back into water aerobics. Does anyone in the Denver, CO area know of a good warm pool with aqua aerobics?
Cheers,
Melissa
Hi Melissa
I know! It is "invisible," right? So, when I try to talk to people about it, I just get blank stares because I "look" healthy. People need to know that not all diseases are visible 👀. Some people are really suffering inside physically and psychologically.
Happy Hump Day! I just joined this group today to hopefully help and get help from others. I have been receiving treatment for my RA for over 10 years and it has been having more flare ups, more medication and more pain. I want to find a way to help myself with better self care without feeling like my body has been abandoning me. I must find a way to keep my "can do" attitude in spite of my health issues. I want to know how others have been able to keep a positive attitude, keep working, provide self care, and love my body where it is at.
I just joined today. I was diagnosed about 13 yrs ago. I am trying to deal with the diseases, grief, and loneliness. I am hoping to find some help here and some people to connect with outside of the group. Please help me guys. Thank you
Hi Michelle
You said you're dealing with diseases, grief, and loneliness and that's so hard. I pray things have improved since you posted in January. I started working at my local elementary school as a substitute teaching assistant and it has saved me. Working with the little ones lifts my spirits and makes me truly happy. I'm retired and am doing this part-time. If you can, it benefits mental health enormously to stay busy. How are you doing now?
Hi Michelle
You said you're dealing with diseases, grief, and loneliness and that's so hard. I pray things have improved since you posted in January. I started working at my local elementary school as a substitute teaching assistant and it has saved me. Working with the little ones lifts my spirits and makes me truly happy. I'm retired and am doing this part-time. If you can, it benefits mental health enormously to stay busy. How are you doing now?
I just joined this group today and am looking forward to being part of a group of people living with RA. I was diagnosed almost 2 years ago and have been on hydroxychloriquine since the diagnosis. Until recently, I was blessed with being mostly "asymptomatic". Lately, I have had a good deal of pain and swelling in my hands and feet. I'm noticing more fatigue than usual and am wondering what will be coming next. I don't know what to expect even though I've done a lot of online research; I may be information overloaded at this point. I find myself feeling a bit down. Just wanted to introduce myself and say hello.
Hi, just joined this group, and was hoping that someone has used a more natural way of managing pain. I have been on every medication out there for RA and is very concerned about the side effects. I have been off the RA meds for about 6 months now and is managing the pain with low dosage of predsonine to function on a daily basis. I am getting ready to retire and medicare does not cover any of the RA mdication so I would not be able to afford.
Hi Barbara - I just joined this group and read your post from December. I am doing hypernourishing - it's explained on Dr. Brooke Goldner's website - she healed herself of lupus and kidney disease with her protocol and it has definitely helped me already. I am also exploring other alternative and complementary therapies for RA.
Hi, Barbara! I just joined today and saw your post. I am on Medicare and was prescribed Xeljanz, but couldn't afford $12,750 for 30 days at 5 mg. twice a day. I was able to qualify for 'Medicare Extra Help' and they covered the full cost. It also covered the $700/mo I pay for inhalers. Maybe you've already looked into it, but I should have applied much sooner. My best to you. Happy New Year!🙋♀️
Hi All,
I've been living with RA for 5 years and still struggle with medications that don't work that well and the worry of how these meds affect my body long- term. Would anyone in the Chicagoland area like to meet in a group and exchange experiences about RA?
I am new here and was just diagnosed with RA and lung disease. I am thankful that you are all here and I am not alone. What to do next is what is spinning in my head. My career and life have come to a hault.
Hi, Jason! I know exactly how you feel. I have been living with NSIP and ILD for 20 years. What is your diagnosis?
They have treated me with large doses of prednisone because it's the only medication that keeps my sat rates out of the 70s (most of the time). Of course I've complained about joint and muscle pain for years, but my RF and CRP are always negative. Literally, months ago I was finally diagnosed with Seronegative RA, CPPD, and several spinal problems. It is a lot, so I relate. I would love to connect and share advice on positive actions and strategies. Happy New Year!
Hello.
I ,'m 45 y.o. female and was recently diagnosed with RA. I am also new to this site and finding a support group. I don't exactly know where to begin, but ... I've been reading and reading about RA and I'm in information overload mode. I'm overwhelmed. The most recent challenge I've been having is numbness and tingling in my hands when I sleep. It's enough to wake me up. Is this normal? Has anyone experienced that or something similar? If so, does anyone know what the cause or a possible solution to it is?
TIA
Thank you for sharing this. I have had numbness and tingling at night and was not sure if it was related.
Hello again, Jason. I hope you saw my lengthy reply to Tia. Maybe there is a take-away from my mistakes. I hope you are feeling ok today. Take care.
Hi, Tia! Happy New Year! I'm not sure if my problem is the same, but I want to let you know my experience, just in case.
So, I will be 60 in a few weeks. I have been ill all my life, diagnosed with lung disease at 40, recently with Seronegative RA and Spondylitis and Sponythesis (all the types of spinal arthritis). I have been telling doctors about the numbness and tingling for years. They always blame it on my medication. It became so severe in hands, feet & legs that I sought out a spinal surgeon. Tests (CTs and MRIs) confirmed multiple areas of spinal stenosis. She ordered surgery that my pulmonologist isn't sure I can survive.
My advice, don't wait to talk to a spinal specialist. She also told me that arthritis makes bone look more dense than it really is -- so don't trust your DEXA results (like I did). Even my UCLA rheumatologist (from STANFORD) didn't catch my stenosis. I have Medicare but I was able to make an appointment without a referral. There are treatments if you can find the right doctors, and get the right diagnosis soon enough.
Please let me know how it's going. My best to you!
I experience this all the time. I was just diagnosed recently too and am having all the same symptoms. I am new here and still learning about this . I am just glad we are not alone. It is nice to know this site and people are here. Thank you for sharing. I am still learning , but am open to anyones thoughts on what to do next. Long road ahead and doing it alone is not fun.
Hello.
I ,'m 45 y.o. female and was recently diagnosed with RA. I am also new to this site and finding a support group. I don't exactly know where to begin, but ... I've been reading and reading about RA and I'm in information overload mode. I'm overwhelmed. The most recent challenge I've been having is numbness and tingling in my hands when I sleep. It's enough to wake me up. Is this normal? Has anyone experienced that or something similar? If so, does anyone know what the cause or a possible solution to it is?
TIA
Hello.
I ,'m 45 y.o. female and was recently diagnosed with RA. I am also new to this site and finding a support group. I don't exactly know where to begin, but ... I've been reading and reading about RA and I'm in information overload mode. I'm overwhelmed. The most recent challenge I've been having is numbness and tingling in my hands when I sleep. It's enough to wake me up. Is this normal? Has anyone experienced that or something similar? If so, does anyone know what the cause or a possible solution to it is?
TIA
Not sure how to best get involved but I'd like to! I was dx with RA in early 30s, now late 30s and I understand a bit more, but still feeling the symptoms on a daily basis and looking to connect with others who "get it". I'm exploring a healthier diet and take med (hydroxychloroquine) my rheumatologist recommends. Finding it hard to exercise, mostly mental to be honest! Looking for ideas for what others do. Things that work well I've noticed is ginger tea, walking outside laps in my neighborhood for a bit, getting a massage focused on challenge areas. I also find epsom salt baths are really nice (I'll try to do them in the morning to up mobility for the day) and then trying to be kind to myself when I need to rest. I'm reading your posts too! I'll try to reply to some, excited to hear what people have to say.
Hi, new here. I have had arthritis for over 10 years.
Here is the link for tonight's meeting
https://arthritisfoundation.zoom.us/meeting/register/tZwtdu-srD4tE9W8tEVEmslw_g22-eqaPrZu
Not sure if there are meetings or if the support is through chat/posts? Just getting acclimated and thought I'd ask in case someone knows!
Will there be more meetings? Thank you
Hi..I have had r.a. for about 10 years, due to a sore because of Covid I am now off off of all my medications. My mobility is very impaired. I swim daily, but sadly that must stop, due to the change in weather. I am looking for a good, but interesting exercise program, P/t is not an option at this time. Depression is a real problem. If anyone has a good idea please let me know. This is my first experience with a chat group and I wonder what I should post.Thank you
This is my first experience with joining an on line support group. What I would like as well is an in person group. Any ideas?
I am in Nassau County NY.
Ok, I just posted before reading other posts and was perhaps too vague. I've recently been diagnosed after 6 yrs of confusion, depression and minimizing docs. I found a wonderful doc - but now that the pieces are coming together about how all my symptoms come from this one disease- I feel very alone in it. Online groups would be so helpful for me but do not know where to look and find.
Are there online , peer lead support groups?
Hi Everyone ! My name is Liz . I was diagnosed with RA and Fibromyalgia about 8 months ago. I have seen a few drs and working on diet changes. I have seen some changes with diet change but its so hard to stay on track. Anyone have any relife with diet change? I would love to share some recipies that I have created if anyone is interested in them =)
Elizabeth, I will take a recipe post! I just bought the book, anti-inflammatory diet book: https://www.amazon.com/dp/1623159040?psc=1&ref=ppx_yo2ov_dt_b_product_details. Maybe you are interested the link is amazon but I also got it from my library first to see what it was like.
I'm slow on making changes but I'm also getting a healthy meal subscription to just help me get started (it'll send you snacks, meals with easy prep). I have arthrisis in my hands and so meals are TOUGH, I don't like chopping/standing cooking for long so this is helpful. If people are interested I can post the link to what I use here as well.
Hi all, any suggestions for pain management outside of medication?
We have a local farmer's market and a woman had a stand with CBD lotion to ease muscle pain. I don't use any other CBD products so I asked her a lot of safety questions before buying and used that day when I got home. It was really nice and I liked the smell (mint/winterfresh). I don't know if you can look into CBD lotions but I was skeptical but found my lower back and hand pain was eased. My other thought is epsom salt baths if you can. Put a lot of salt in! I did for awhile but didn't put enough to make it worthwhile.
I don't even get pain meds. I take tylenol. My doctor says to. But I still hurt.
I'm just six months into a definitive diagnosis of RA. I have dealt with OA for 30+ years, I have bilateral knee and shoulder replacements to prove it. With the recent RA diagnosis, I have weaned off of a 25 year Celebrex habit. We tried Plaquinil but it did nothing. Now I am two months into leflunomide, which I think is helping some but I can't decrease my prednisone any further that 10mg daily or I flare. How long did it take you to find something that really helps?
Hello Dee, I don't anything that helpful to write other than I get it! Finding the right meds so hard! I've been taking Plaquinil for almost 2 yrs and I'm so unclear if I'm supposed to notice a difference or not. I think maybe a little in my joints? It's hard to tell and then I wonder if it just more preventative. I'm kinda bummed out because my anti-anxiety med for stress that I was on is on the "counteracting list" and I have a different SSRI that's not very helpful. All in all I'm taking two "meh" meds and not sure if I should swtich. I have a new RA doc I'll see April 2024, I'll ask him but just posting here in case people have idea/suggestions!
Hi. It took a years treatment and 3 failed medications and finally Kevzara helped mine to a fair degree.
I recently took a trip to the mountains and realized I couldn't do what I used to. Hiking, biking, etc. all difficult.
I found myself in deep grief. Like someone had died. Me. Anybody experienced that?
YESSSS. I get it! I feel that way too! With hiking, or gardening, playing with my kids, doing normal chores that now wipe me out physically, walking is even slower. I try to keep things a "day at a time" even though that probably sounds so contrite. I truly am grateful I don't have something that's a immediate danger, but the slow progression is sad because I feel it in my quality of life. I tell my partner I feel like 30 yrs older than I am and it sucks. When I feel like this I try to fall back on what I can do/still enjoy. For me that's walking outside, but yes it absolutely is grief because the life you thought you'd have isn't it anymore and it makes sense if you're sad or angry! I would just feel that and let it be. People out there are having the same experiences, you aren't alone in it.
Hi Leslie! I was just diagnosed in May 2023 and am 57 years old. I find the mental toll most difficult. I was already on depression meds for years related to a car accident and chronic pain. I'm angry with my new limitations ( I don't like it when people tell me what I can and can't do). I find my mood is down most of the time and crying almost ever day when I can't do something. My feet are the worst and was referred to a foot & ankle doc. She gave me a cortisone injection I'm my right big toe joint and padded both my shoes for the ball of foot pain. I live on the east coast of Florida and LIVE in flip flops, not the cheap ones, the ones made with good arch support and thick padding. My doc said "no more flip flops". I also love to walk on the beach several times a week, that's my "me" time. My doc said no more beach walking. I'm crushed physically and mentally. I don't feel like Tracy anymore and I can relate to how you're feeling. I'm reading a book, "A Patient-Expert Walks You Through Everything You Need to Do and Learn". It is her story through the years and her journey with RA. I can barely get though a few pages at a time because I bust out in tears as it starts with what you and I are experiencing at this moment. I feel uninformed, lost, angry and filled with dread. When we're you diagnosed and how are you dealing with the mental aspect RA creates?
Tracy S
I'm sorry nobody responded to you sooner. I think we all go through this "deep grief" feeling at some time or another. For me the feeling seems to modulate from greiving the person I used to be to feeling grateful to be alive and finding joy in the everyday things. There's no doubt that my world does feel smaller now than it did ten years ago but I'd still rather be in it than not. I hope it helps to know you're not alone.
Yes I am going through the same thing. It is so hard when you are not even able to do those little things that bring you so much joy .
I definitely understand what some of you are going through, hopefully we can help each other.
I was in severe pain after changing my diet not that I was not in pain, but change in diet may or may not have cauesed extreme flare ups. Time to see doctor.
I am going back to Mediterranean diet. I have been on Prednisone for 1 1/2 months now. Great difference in being able to move and work, which I could not do two months ago.
Now Doctor is looking to put me on Methotrexate very low doses and looking to start on Infusion drug. Drug administered evey two months. I have put off for a month weighting the pros and cons.
Have any of you had experience with Infursion drugs ?
Robert, I have been on various infusion drugs. They are not all the same and it took a number of different drugs over many years to find the right one. So go ahead but don't expect miracles, for me it was a journey, no an immediate solution. Good luck
I have had Remicade infusions every 8 weeks since 2002 and have had no side effects from the infusions. I also take methotrexate weekly and folic acid. My recent blood work indicated that the RA is under control, however, I still suffer from pain at times and have lost balance and have to use a cane or walker.
Robert - I've been on an infusion medication for 2 years and it has helped slow the progression a great deal. One needs an open mind to find what works. I was on Remicade, and it did nothing for me. My rheumatologist switched the med to Orencia and that is working well for me. My own experience says this is easy to say but hard to do for people in our situation, and that is: have patience. Sometimes my body screams in pain, and I know now what ever action I choose is going to take some time to impact the pain. Best of luck to you.
Hi, My name is Marcia and I was diagnoised with RA, seronegative almost a year ago. I'm 71 and take methotrexate, 8 tabs once a week. I have really appreciated all of your contributions and have compassion for all of you. Recently I lost 10 pounds without trying within 1-1.5 weeks bring down to 112. I've not seen information on this but would be grateful for information or if you have experienced this as well. Also, is there a newsletter through the foundation, and if so, how do I sign up?
Thanks to all of you and may we strive to keep having a postive outlook in our journies.
I have seronegative RA too. I'm due for a doctor visit but I don't see the methotrexate working yet. I'm on 6 pills w/folic acid since April. Honestly, prednisone seems to be the only thing helping.
Hi my name is Fran & i am 71 was diagnosed with RA in January of 2023. I am taken methotrexate 8 tabs & weaning off of prednisone my fingers are the problem The prednisone keeps my RA at bay but all the doctors want me off it. I have dropped 10 pounds since this all started but it's not the meds. I was on & still trying a plant base diet. I went cold turkey. The meds for me had nothing to do with my weight lost. The diet did it The diet did helped me cope with the pain until the methotrexate kicked in. I'm still working out what's the right meds for me. Good luck
I take Cimzia and recently complicity cut funding down for my copay assistance. I now have $2000 a month copay. Have been calling trying to find help. I was wondering if anyone had a suggestion on where is a good place to find coverage. I've called quite a few places with no luck. Any suggestion would be helpful
Thanks
Gail
I also take Cimzia and didnt know this could happen. I'll look around for you. Good luck ❤️
Nina
Jen B
Hi all, my name is Jen and I was diagnosed with RA back in December of '22. I had a few flare-ups, but it was manageable until April of this year. I was on hydroxychloroquine for two weeks, but it made feel like I was coming down with something generally sick, lethargic, incredible bloating, nausea. Does that go away? My doc stopped it because I has having severe bluryness but it turns out it was occular migraine. While off for 5 days the RA was twice a bad, so I guess maybe at least the hydrooxychloroquine was working.
I'm also wondering if anyone knows if there is a connection with prediabetics becoming diabetic due to the plaquenil?
I'm glad to have you all to talk with about this.
Hello all,
Any insights or guidance on finding financial assitance for bio-logic or bio-similar drugs? Amjevita is working well for me, but given the coverage gap (Medicare), I will soon not be able to afford it.
That being said, I am thrilled to be able to move without pain again.
Jeanne
Most of the biological have copay cards through the manufacturers. Your Rheumy may have info on it or you can google it, I found my last one for Orencia by googling it. Also, ask the pharmacy, they are usually very helpful.
Good luck!
Hi. I'm Shanna, I'm new to the group. New to RA, too. Just looking for someone to talk to about all this.
hi, Shanna! I am new too and sometimes just super overwhelmed by everthing. I have been on plaquenil for about a year now, when I was offically finally diagnosed with RA.
It's a lot to manage, just take it slow and choose one thing at a time. For instance, diet was the first thing I tackled to see what my triggers were for inflammation. For me, it was tomatoes, bell peppers, rice, and sometimes dairy. I already don't eat gluten or sugar, so I found that easy to adapt.
Hi all. Diagnosed with rheumatoid arthritis 4/2022. Taking hydroxychloroquine now, but started to feel pain after 10 months. Still on it, but taking prednisone too.
dr wants to add/change to methotrexate, but heard it has bad side effects. Did anyone have any luck with sulfasalazine?
thanks!
Heart burn, hair falling out, still have swelling and pain. Nope, I'm wondering if methotrexate is working for me. Been on it since April on 6 pills.
Most dr's have you take methotrexate early on as the insurance companies require it. The low doses we take for RA aren't so bad, but you do have to avoid the sun. I wasn't on it long before it failed for me because it has dairy in it and I am allergic. But, you need to take folic acid with it.
Hi I'm new in this group. Is there anybody here who live in Broward Country, Florida who could recommend me a good Rheumatologist? Thank you.
Thanks for including me in this group
I feel the same. It's nice to find a place to talk, maybe, right? I'm Shanna by the way.
Is there a zoom get together or support group meeting of any kind?
I have been dealing with increasing pain for over a year. My mothers has RA and my brother has Ankylosing spondylitis. My blood work does not say I have RA. I've even been going to specialists at Duke (endocrinologist) and they have no idea what is going on. I do have a rheumatologist and he is treating my pain but at this point don't have much of a diagnosis. I'm wondering if I have early stages of RA or a serum negative type. What should I ask at my next appointment. I have sore joints and so much fatigue. Some osteoarthritis as well. I def have flares. At this point I'm willing to try RA treatments (btw, steroids make me feel better when I've had them for my asthma) but know that insurance will need proof.
Hi, my name is Amanda Whiting. I've been living with RA for 24 years now. I've been out of the work force now for 7yrs; after multiple surgeries including knees replacements, rotator cuff repair, even surgery on an eye due to inflammation called scleritis. My life as I knew it and envisioned it was over. Depression and anxiety set in. I've been in a healing journey and am looking for support groups in AZ. I'm on social media trying to create community because I know there is strength and healing in having support. Does anyone belong to a support group in AZ or virtually that is active. It seems like these platforms are ghost towns... not active. Does anyone know of any other org and agencies to reach out to? My goal is to facilitate a support group with regular meetings. We need to feel support and a sense of belonging. I know I sure could use a friend who really understands what I'm going through. I'd love to be the same, a listening ear to another RA warrior.
Amanda.
I was wondering if you found a support group in Arizona. I live in Arizona and would love to be part of a support group. I have seronegative RA. I was diagnosed 2.5 years ago. In the back on my mind, I did not really think I had RA. But the last few weeks I have really started hurting and My knees were warm and my legs have been throbbing. Any update would be appreciated! Thank you
Hey Amanda,
I've had trouble finding support groups. The most luck I've had is through HeyPeers. There's a chronic illness group based out of Washington State that holds multiple virtual nation wide support groups on HeyPeers. Other than that, I'm still searching.
Hi Everyone,
My name is Cory. I was diagnosed with seronegative RA in 2020. I got really sick in December 2019 (I believe it was COVID) and my knee swelled to the size of a grapefruit. Then my other knee did the same thing a few days later.
The first rheumatologist I went to said it was an illness related arthritis and that it would go away. I didn't buy that.
I got a second opinion and she's now my current rheumatologist. What's working for me right now is methotrexate and Enbrel. I used to hate needles. Now they don't bother me.
I had to get a permanent handicap placard for my car. I get looks all the time from people thinking I shouldn't be parking there. I had one guy write down my license plate number. Makes me feel awful.
Anyway, I'm here if anyone wants to chat.
Hello Cory,
I am new to the group today. I was diagnosed in 2019. Currently on methotrexate and Humira although was on Enbrel for a short time. I don't know anyone else personally with this and was hoping to speak with someone like yourself who is managing though this. Let me know if you would be interested in having a short conversation.
Can you tell me how you were finally diagnosed. I believe I have serum negative but not sure what to ask for.
31 y/o adult who has been fighting for a diagnosis for 5 years. The doctors have recently realized that I have RA and not MS. I was curious if anyone else has severe nerve issues caused by RA and if so how do you treat it? They've tried Nortriptyline, Gabapentin, Lyrica, muscle relaxers, Meloxicam and topical medications such as lidocaine but I have a sensitivity to serotonin medications so have been relying on heating pads, tiger balm and capsaicin to manage the excruciating nerve pain. Also, anyone who just wants to chat is welcome to reach out 😺
My Dad had great relief with a mixture of frankincense, peppermint oil and put into a coconut oil. He would rub into his legs once a day. He was also on gabipentin too but this was life chanfor him. Make sur eyou buy good quality oils. Cheaper ones didn't work as well.
Hi Amy, I'm 59. I do have some inflamation and neuropathy. May I ask what is a steroid taper and does it work? My blood test for RA is positive but I have not seen a Rhuematologist yet. Still looking. Sorry to hear about your nerves. Do you use heating pad to reduce the swelling?
Hi! The only thing I've found to help with my nerve issues was a steroid taper. When my RA is really bad, the inflammation compresses my nerves. Nothing else really help and the neuropathy is terrible. Happy to connect more, I'm 40 y/o and have had RA for 8 years.
Hello! My name is Desra and I'm from Central PA. I am 48 years old and was diagnosed with Juvenile Rheumatoid Arthritis at age 3. All my joints are affected. I was diagnosed before biologics, resulting in me needing hip replacements, a knee replacement, neck fusion and more to come. I have friends in Arizona who are about the same age as me and have similar stories as mine. I'm really looking to meet some people from my state of Pennsylvania though, who also share a similar story as mine, and to get connected. I like reading, playing ukulele, gardening and stoicism. I'm always striving for better health, physically and emotionally. I would really love to meet some RD kindred souls.
Hello!
My name is Karyza (pronounced as Carissa), I'm 24 & I was diagnosed with RA in March 2021. I was perfectly healthy & had no health issues until I got Covid in Jan 2021. It triggered RA & now I've been learning how to live with it for the past 2 years. Sometimes I feel like I've got it down but then I get a flare up or really bad morning stiffness/pain & it makes me feel like I don't know how to cope with it. I'm currently on celebrex & Cimzia (after trying Humira, methotrexate, meloxicam, & Enbrel). It's hard to see how I was once very active (rock climbing & doing CrossFit) to having days where I can't go to work/get out of bed. How do you guys do it?
Hey Cory & Karyza,
Similiarly, I was extremely active before my diagnosis and had difficulty adjusting. Somedays I rely heavily on my motorized wheelchair, but do get anxious in public using it as strangers tend to be judgemental of invisible disabilities. The assumption that if you use a mobility device you must never be able to walk is overwhelming sometimes.
I often make plans for myself when I am between flares, and find myself unable to achieve these plans once my flares start up again. I suppose to answer your question. I often sit down and write lists of things that I'm still able to do when I'm having a flare. Like, while I'm unable to go hiking I am able to lay in the sun or do stretches. Or on days when I cannot use my legs, I can still do model kits and do small art projects. My therapist calls it reframing self-care. Finding mobility assistance devices, medications and topical solutions also help.
I'm 38 and I was diagnosed with RA in my knees after being very sick. I'm in the middle of a flare. I'm on methotrexate and Enbrel. I was very active too. It's awful how much you miss doing things when it's gone.
My first visit with a rheumatologist was not good - no real exam and was given 2 choices of medications, methotrexate or humira. I am waiting for authorization to a different rheumatologist. Reading all the different experiences with the medications is mind boggling. I want a quick and easy fix and it does not seem as though that is possible with RA. Very disappointing indeed.
I hate to disappoint you Mary Ellen, but there is no quick and easy fix, and it only gets worse. My initial diagnosis was nearly 40 years ago when there were no treatments so the doctor shrugged it off. I was rediagnosed after complications from a simple knee procedure set in. I came to understand that besides the joint pain so many nagging issues (from TMJ to hearing loss) were all part of my RA, 8 years later and I'm really struggling. I'm about to have my first (of two) knee replacement surgeries (a contributing factor is that I was born with deformed legs and while they were "fixed" enough to appear normal, I've never walked properly.
Auto-immune disorders (of which I have 3) get less attention than other conditions. The initial/basic medications weren't even developed for RA but for other diseases - malaria and cancer to name two - but serendipitously they were found to help with RA. The cynic in me (and as someone who has worked in HR/employee benefits consulting for years, consulting to some of the country's largest employers) says that there will never be a cure as long as pharmaceutical companies can charge $4k, $5k, and so on per month for "treatment."
Switching gears, does anyone know of any in-person support groups? I'm in the Austin area and would like to find one.
I hate to disappoint you Mary Ellen, but there is no quick and easy fix, and it only gets worse. My initial diagnosis was nearly 40 years ago when there were no treatments so the doctor shrugged it off. I was rediagnosed after complications from a simple knee procedure set in. I came to understand that besides the joint pain so many nagging issues (from TMJ to hearing loss) were all part of my RA, 8 years later and I'm really struggling. I'm about to have my first (of two) knee replacement surgeries (a contributing factor is that I was born with deformed legs and while they were "fixed" enough to appear normal, I've never walked properly.
Auto-immune disorders (of which I have 3) get less attention than other conditions. The initial/basic medications weren't even developed for RA but for other diseases - malaria and cancer to name two - but serendipitously they were found to help with RA. The cynic in me (and as someone who has worked in HR/employee benefits consulting for years, consulting to some of the country's largest employers) says that there will never be a cure as long as pharmaceutical companies can charge $4k, $5k, and so on per month for "treatment."
Switching gears, does anyone know of any in-person support groups? I'm in the Austin area and would like to find one.
I hope you find a doctor that will listen. My second rheumatologist listened and performed tests. I was diagnosed with seronegative RA.
Hi Mary,
Sorry your first visit did not go well and that you soon get your authorization for a new doctor! It is disappointing that there is no quick fix, but sadly it can take a while to find the right "mix". But please don't give up hope!
I am not a doctor, so please don’t consider this medical advice. I was diagnosed in Aug 1996 and it does take some time and I have been through several different meds and tried different things. It’s not perfect, but it definitely is better! Also, what helps one person may not help another. I have learned over the years that sometimes I just need to take care of me. It’s not always easy, or even always possible, but sometimes you just have to tell people “no”
The Arthritis Foundation can provide a good source of information specific to RA:
https://www.arthritis.org/rheumatoid-arthritis-patient-education
There is also a help-line: https://www.arthritis.org/helpline
1-800-283-7800
My number is 703-473-3966 and I am on the East Coast
Glad you found us!
Lisa
I am a 70 year old female and have had RA since 2004. This mainly affected my hands and fingers. I was a Family Nurse Practitioner and I could not push the plunger on a syringe. I was initially started on plaqinil which did not help. I started on methotrexate which helped a bit. Then Enbrel was added to the methotrexate and practically overnight I was in remission. Many years ( over 10 years) went by in remission. Then methotrexate was stopped. I did well until one Christmas holiday I was late on on an Enbrel dose and soon I went out of remission.I wonder now if they had restarted the methotrexate I would have gone back in remission. I was started on Humira and this did nothing. I was started on Orencia and methotrexate and was back in remission.
I am a 70 year old female and have had RA since 2004. This mainly affected my hands and fingers. I was a Family Nurse Practitioner and I could not push the plunger on a syringe. I was initially started on plaqinil which did not help. I started on methotrexate which helped a bit. Then Enbrel was added to the methotrexate and practically overnight I was in remission. Many years ( over 10 years) went by in remission. Then methotrexate was stopped. I did well until one Christmas holiday I was late on on an Enbrel dose and soon I went out of remission.I wonder now if they had restarted the methotrexate I would have gone back in remission. I was started on Humira and this did nothing. I was started on Orencia and methotrexate and was back in remission.
Hi, I'm Nicole. I'm 32 and have had RA since I was born (although they first diagnosed me at 5 when I couldn't paint my mom a hand turkey for thanksgiving). I was a child miracle by doctors because I was able to stay active and ride horses and even went into remission from ages 17-23. My RA is now back aggressively and I've been through methotrexate, enbrel, humira, actemra, and now on rituxin...in the past month I've become almost bedbound due to being unable to get out of bed...I'm scared of needing a wheelchair and full care soon...
Hi Nicole,
So sorry things have gotten so bad and I wish I had an easy answer for you.
I understand the medicine roulette – been through so many myself. Hopefully they can find the right mix.
The AF has a help-line: https://www.arthritis.org/helpline 1-800-283-7800
Lisa
RA Support Group, Lead Co-facilitator
Hi! i just joined this RA group...Im 26, and looking to make some friends who experience what we do...i was diagnosed with RA a year ago and clearly its a life long battle...Im really into tiktok, if you want to message me there and connect my username is @shoang26
I was diagnosed a few days ago with RA. My rheumatologist offered 2 treatment plans - methotrexate or humira - and told me I need to decide how to proceed after talking with my family. How can that be? I have no medical expertise. What I have read about these treatments is scary. And then I wonder if there are homeopathic remedies or alternative treatments. I am floundering her and am VERY sad.
Initially, at a time my RA was already in the "moderate" category, I started with a mix of oral medications. That helped a little but after a year my rheumatologist said I should be feeling better (and my numbers should be better too) so I switched to Humira while continuing to take methotrexate. After about 4 years Humira stopped working. I'm now on Orencia and methotrexate.
The biologics are expensive. If you have employer-sponsored health insurance, your plan should pay most of it and you can request a "copay card" from the manufacturer which will take your copay down to as little as $10, even $0! If you have individual health insurance, your request for this medication will most probably initially be denied and you/your doctor will have to appeal. If your insurance will absolutely not cover it, and you make no more than 200% of the Federal Poverty Level, you may be eligible for a "grant" from the manufacturer, who will provide it at no cost to you.
Hi Erin,
What great advice. A team is definitely needed. Thank you for contributing!
Lisa
RA Conect Goup Co-Facilitator
Hi Mary Ellen,
I am one of the Facilitators for the RA group and as such cannot provide medical advice; I just have RA as well!
The Arthritis Foundation can provide a good source of information specific to RA: https://www.arthritis.org/rheumatoid-arthritis-patient-education
There is also a help-line: https://www.arthritis.org/helpline 1-800-283-7800.
Glad you are part of our group!
Lisa
Being a Nurse Practitioner when RA hit me, my rheumatologist had me watch videos on Enbrel. Even though there can be serious side effects I have not had any except losing hair and mouth sore due to methotrexate. I am now taking 3 tablets of folic acid and these side effects has calmed down. At the time when I was diagnosed in 2004 drugs like Enbrel were just being introduced. So there is a long history on Enbrel.
I understand how you feel. When I was first diagnosed I was bombarded with a bunch of medications including methotrexate and Enbrel. At the time it wasn't what I wanted so I tried alternative options. Now I'm currently on Enbrel and I haven't had any issues so far. I'm still trying alternative options which was stem cell therapy 6 months ago. I had the biggest improvement with stem cells. But the biggest advice I could give is get a team together. Get connected with a mental therapist, physical therapist, massage therapist and etc. That is something I wish I would have done when I was first diagnosed. You're going to be ok.
New here. This group doesn't seem to have regular meetings. Is it me? I'd be willing to facilitate, but don't know how to get info on how.
I just joined too....
Hi everyone! My name is Dee and I am a caregiver of my partner who has rheumatoid arthritis. My partner got diagnosed FINALLY in July 2022 after so many doctors had told her the pain was in her head or she had something else like Lupus. Now that she has found a steady cocktail for her RA, she has been feeling way better but is not where she wants to be. The problem we are having now is "normalizing" our lifestyle. She feels bad that she can't do more and that I seem to be overworked with chores and errands. I feel bad that I want her to do more as well, but eventually, I am going to feel burned out.
Does any have suggestions on tools we can use in our relationship to better communicate with each other so she doesn't feel "worthless" and I don't get burnt out?
Please let me know as well!
Hi Kadeesha,
Welcome to the group. We are actually looking at starting a group for couples or caregivers but that will be later in the year. We are planning on doing a meeting specifically for couples in the coming months so keep an eye out for that. My husband and I have issues with normalicy. You are definitely not alone. Keep supporting one another and know you are doing the best you can for each other. I will let you know when we have a date for the couples meeting.
Hi my name is Kathy, I was diagnosed with seronegative rheumatoid arthritis in 10/21. I'm currently on Orencia infusions. I just started about a month ago. How do people deal with risk of infections? I wear a mask and haven't been sick since January. I constantly wear a mask and social distance but feel awkward about it.
I wear a mask all the time too Kathy. When people don't see a mask on they say "I didn't recognize you without a mask." It's hard.
Hi, my name is Fabiola. I've been having joint pain since I was 10 years old, but was constantly told that it was growing pains and eventually it worsened, leaving me depressed a year in highschool. I just recently got diagnosed this January with Rheumatoid Arthritis, all I've been taking is Naproxen and have not yet received any sort of treatment. The doctor I go to is pretty far, and it has been a constant struggle with transportation but she is great. I hope that with future treatment I learn how to cope, it's just scary. Thanks feel free to contact me with my email [email protected] :)
Naproxen? Really? That's all?
Hi Fabiola! Im new to this group and also just got diagnosed with RA in February after a long time with unexplained pain and joints swelling. It's a lot to get used to. I'm glad you have a good doctor, even if they are far away. I kept a pain journal for a few months and shared that with my doctor to help her understand how much I was feeling and that celexicob was not helping enough. I'm now on hydroxychloroquinine, and testing that out for a few months. From what I understand, it can take some time to find the right medication. Wishing you less pain and a good solution soon!
Hi. I'm Beth, and I am new to this group. Has anyone been living with Rheumatoid Arthritis for over twenty years? If so, I'd like to connect with you. I'd like to talk about long-term effects of living with this condition. I'm looking for some guidance. Thanks.
Hi Elizabeth. I have had RA for about 35 years, though I went untreated for most of that time because initially there were no treatments and so I forgot about it. I was "rediagnosed about 8 years (and much damage) later. Happy to chat.
Hi Beth! I'm also new to the group. I was born with rheumatoid arthritis and will be 36 this August. Reach out if you have any questions
I am on intravenous biologics and have horrible veins. Recommended to have a port put in. Pros and cons? Does anyone else have one?
Hi I hope everyone is in good health. My wonderful doctor who I have gone to for over 30 years, has just had a stroke and will no longer be able to continue 2 treat patiends. I now have to find another doctor in my area of Southern California. Long Beach, Torrance or Orange County. Any suggestions on doctors who treat Rheumatoid arthritis patients in these areas. Thank you.
I was diagnosed with RA several weeks ago. I did my course of prednisone and have been taking Plaquenil for several weeks. Is it normal to still be feeling joint pain in old parts and getting new pains too? When people tell me their friends with RA live "normal lives". does that mean they still have pain and swelling most days? The doctors at Kaiser are overwhelmed with patients and can't give that idealized "work with your care team" experience.
Getting on the correct treatment can take along time. Unfortunately, it has been a lot of trial an error in my experience. I'm still having a hard time but do have some decent runs with remission. I do best when I am serious about what I eat and get in some form of exercise daily.
Hi Sally-
Your note about Kaiser caught my eye. I am with them as well in the Northern VA area. If you're local, I can reccommend my rheumatologist to you. She changed my life. I spent 4 years going to doctors who couldnt care less that I was sititng in front of them in pain daily. She took the time to ask me my story from the beginning and listened to every word I said. She has put great care into me and my dianoses and has helped me come a long way from where I was 4 years ago when I first met her. That being said, there are still good and bad days. The pain comes and goes but I face it each and every day, taking breaks when I need them, but fighting through a lot of days, doing what I can to live as normally as possible. There is no perfect way to do life with RA and it will be a journey. It takes time, but you will see improvements. :)
Hi Sally B,
I was diagnosed in late 2018 and so it still feels 'new' to me... I heard the same thing from co-workers, friends and acquaintances. After feeling shamed about having major pain, fatigue, swelling joints, daily pain.. I finally decided to just retreat, self-isolate and not breath a word of what 'autoimmune disease' I struggled with in professional settings and with non-intimate friends and acquaintances. My experience with RA is not at all what so many people reported their friends, relatives and acquaintances lived, they said, "Oh my aunt/friend etc just takes medicine and goes hiking and climbing and works 50 hours a week no problem, living a 'normal' life." I thought I was doing something 'wrong' - eating the wrong diet, exercising too much, not enough, not resting enough, etc. Finally, I've realized some key ideas that helped me. I just read in the CreakyJoints blog something that spells out one part of what I realized. The blog talks about when people in your life think you are 'faking it'... the author notes that if people with chronic autoimmune diseases are 'faking' anything, it's 'faking' being well. I now understand that there are so many things at work in the remarks and reception of others to the reality of your (and my) unique experience of the disease: on one hand, people do care and hate to think of us in pain all the time. Friends and family can easily appear to make light of the depth of pain or impact of symptoms on living because they want it to be true that their friends with RA take medication and live 'normal' lives. Saying this allows a psychological buffer between the natural fear of an unpredictable and uncurable disease and their own experience. Another thing active here, is that their 'friends with RA' may just be 'faking being well' - now, I don't mean faking it, but after you live with pain for a long while, sometimes you just want to hide it and 'look like everyone else' so you mask it with cheerfulness and 'I'm fine'. That doesn't always happen, but it can (I do it, unfortunately). Another aspect of these comments is that each manifestation of RA is different, as are people's reactions to medications. The first person with RA who I met after my diagnosis self reported that she lived a 'normal' life and lived on her terms - at the time I didn't realize that she'd completely changed her professional life to accommodate for the disease. She took methotrexate and that was all! Whearas I had been so ill with methotrexate and the other biologics weren't sufficient to help keep my joints from distorting and growing knots. When I met her and heard her light and breezy, "I'm fine and I do everything I want to do, just take methotrexate and I'm fine."... I was so discouraged. Then, finally over months of trying different medications a year of excruciating pain and professional challenges because of it, I accepted that my experience and my body are unique to me. Period. That's it. It's my story and my experience. I don't know if any of that is helpful to you... I hope so.
At the beginning, I found it hard to separate out what RA was 'supposed' to be like and learn to accept how it is TODAY in my body, then accept tomorrow how it is in my body... I haven't been through Kaiser yet... I'm looking for a new Rheumatologist (driving to Portland is too much). :) I wish you well on your journey...
If my name / email address comes up on the zoom link form - my apologies and please fill out with your information!
Lisa
Hi everyone.
This is the link you need to access the meeting on 2/12 at 4 PM Eastern. The link takes you to a form. Once you fill it out, you will get the actual link to join the zoom meeting. You will also get an email with the information. We use this two-step process to avoid trolls.
https://arthritisfoundation.zoom.us/meeting/register/tZcucOGtrDopHtxAWfKVNDknW6BIzihgiTzF
Looking forward to seeing everyone!
Lisa, Michelle, Sadie
HI, I am new to this group. How does this work? Becky H.
Hello im Zoyi im 41, from Queens NY. I got diagnosed on 2004 but they also said i had lupus, i came to NY and met with Bruce Solitar reumatologist and he diagnosed me with RA only. After that i started with methotrexate, i was on that for 3 years and did very bad, i was bald and having a lot of side effects, when they switch me from pill to injection i couldnt take the pain of the injection, that yellow liquid burned me, sting me, it depressed me so bad i told my doctor i wont take it. So they started me with biologics and thats when i started to feel better i started with orencia injections, those injections wasnt that bad. After that it stopped working they put me on Actemra infusion and when Covid hit they didnt want t give me the infusion so they changed me to actemra injection once a week and i got even better. My Dr. Is Abramova now. My hands hurt a lot, my wrist, my knees and im depress taking venlafaxine and bupropion. My doctors changed all the medications that made me gain weight. The only one im in that gain weights is the birth control, i dont like children. I lost 17 pounds because of that and i have hypothyroidism and sleep apnea. Im very happy to be here surrounded with people like me that understand me.
I am sorry to hear of all your struggles. I do hope that you will be feeling better before too long.
Hi Zoraya, I'm glad you found us! Check out the Arthritis Foundation - there is a lot of good information and places to connect on the site.
Lisa
Howdy folks! Happy New year! I recently joined the group in late 2022. I was diagnosed with JRA at age 3 and have grown into an adult living with RA. I have had multiple joints replacement and orthopedic surgeries. I work fulltime alongside 2 of best Rheumatology physicians ever (well in my opinion at least)!
I am looking forward to "meeting" everyone virtually in February!
The hot topics on my list are biosimilars and why is my insurance company making the change? It's so frustrating as a patient as well as a healthcare provider. Also, how do you manage morning stiffness!? My hands seem to be most affected during the winter months. They're sore and puffy first thing in the morning. It takes a good 30 minutes before they're not so sore for me to start using them to get myself ready for work, or drink my coffee.
I hope everyone is making it thru the winter weather! Painfree HUGS!
Hello Lisa! when I had a lot of stiffness and swelling I would take the anti-inflammatory pill before sleeping so that I would wake up less swollen. you probably know about the late-release prednisone pills? I also like cbd lotions..
I was diagnosed when I was 9, I am 38 now and also have had multiple replacements, so it's nice to meet someone like me. I'm trying to connect more with people with RA because I really don't know anyone else..
Hi everyone! Please join us for our first meeting on Sunday, February 12, 2023 at 4 pm ET/3 pm CT/2 pm MT/1 pm PT. We will be getting to know each other and about what to expect from this group. Please bring ideas for topics you would like to discuss as we are starting to plan our guest speakers for the year. We are so excited to start this unique group! Can't wait to virtually see you in February!
Thank,
Michelle, Lisa and Sadie
Facilitators, Rheumatoid Arthritis National Group
Hello, out there! I am newly diagnosed and just found this website. I would love to learn and grow from hearing your experience. I am glad this is an online community because transportation is a real problem for me. I too, would like to know if there are any group zoom meetings. All this is very new to me. I am starting treatment on Cimzia tomorrow. A little nervous. But I'm sure all will be well.
thanks,
Kathy R
I hope your first treatment went well. It is scary. My diagnosis was devastating to me and I cried through my entire first infusion. Fast forward a couple years and I count myself lucky that the treatments work for me. I have to constantly remind myself of where I started so I can be thankful of where I am today.
wishing you luck with your new treatments!
Hi Kathy,
Being newly diagnosed can be scary, but there is lots of good information available. I just posted the first notice for the first meeting on 2/12/23 and I hope you can make it!
Hello
Does the group have regularly scheduled Zoom meetings?
Jan S
Hi Jan,
I just posted a meeting notice on RA page. Meetings will be at least once a quarter
Lisa
My RA treatment makes me more vulnerable during the pandemic and I have been more isolated than I am used to. I am looking for other people who are facing the same situation.
Paulie,
I just posted a notice for our first meeting which will be held on 2/12 @ 4PM ET
Hi Paulie,
I tried to respond before, but my response didn't seem to go through. I know the isolation can be tough and I look forward getting to meet you soon!
Lisa
I am dealing with Arthritis and I have so much pain and inflammation. Are there any kind of medical suggestions for this. I have been to thr Arthritis Clinic several times and they only want to give you antidepressants. I don't want to sleep, I want to stay active and alert. Any suggestions??
Hi Sulayman,
Just be carefu wit tumeric as it is a blood thinner. I just learned that
Lisa
Thank you for posting on our group’s wall. If you have not yet done so, talk to your rheumatologist and share your goals and objectives this will aid your provider in formulating your treatment plan. Most patients living with rheumatoid arthritis take a combination of medications and integrate healthy life styles (physical activity, limiting inflammatory foods, drinking sufficient water, getting adequate sleep, etc.) to help ease inflammation and pain. If you’re not satisfied with your current provider, you may want to seek out a new provider. Our Helpline can help guide you to resources 800.283.7800. Also, while tumeric can help some people, it is also a blood thinner, so you need to be careful.
Lisa Reinstein. Facilitator
[email protected]
703-473-3966
Turmeric can help some for pain. Doesn't solve everything. I use it often. I agree they always willing to put us on something that causes up to be a zombie lol