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phylra posted:
I just discovered this forum for RA discussion. I see that some posts are from 2-3 yrs ago, but I'm hoping some people are still checking in. I also began looking for a chat rm for RA sufferers. I'll try this in meantime. I was diagnosed a few yrs ago & thought it was no big deal initially. My feet felt like they wouldn't bend in the morning. Felt like I couldn't get down the stairs. It went away after an hour or so. Avoided meds; was afraid of Methotrexate. Now I'm on Enbrel, after trying Methotrexate , Remicade, Orencia w/no great success. I'm nervous but hopeful that we'll find something that works great ! To those who deal w/depression - try getting into a support program thru the drug co. or insurance co. My insurance offers free services like talking to an RN or a Therapist/Psychologist when you're in need. If it's there - take advantage. I'm beginning to see that I need all the help I can get. Don't bother complaining to family&friends. They think all arthritis is the same; OR they start telling you about their aches & pains as if it's all the same stuff. My own family does things that make my day harder because they just don't understand.
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sfonseca7 responded:
You are right about talking to anyone who does not have RA. Even loved ones don't know the extending grip of that awful far reaching...crippling...painful.. sometimes never ending. I have a question. Can RA really be the cause of pain from head to toe? Can someone answer this?


Take hart in knowing you are not alone. Don't ever let anyone make you feel like your pain is not REAL.
 
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phylra replied to sfonseca7's response:
I recently had a flare, ran out of prednisone, ran out of Enbrel, & was afraid to take methotrexate because of mouth sores I still had. Eventually I got to the point where I hurt from my neck to my ankles. It was exhausting & lasted all day. I just kept taking Advil & pain meds. My Rheumatologist said yes , RA can cause that . It felt like getting the flu. It's frightening to find out how really bad this can get. We may hate the meds, but I can see why I MUST take them regularly if I want quality of life.
 
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rheumynama replied to phylra's response:
I have had many episodes like you described. I feel like I have the flu from head to toe. Everything hurts, pain is everywhere...like a horrible body flu without the high fever. I have had it last 6-8 hours to several days. Taking your meds and communicating with your doctor is very important.

Hope you are doing much better.
 
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phylra replied to rheumynama's response:
Thanks so much for the support. When the 'flu' episode started, I kept thinking I was coming down with something. I've had RA for few yrs but hadn't experienced anything quite like that. It eases my mind to know that this is a normal occurrence, although I am sorry to hear of others suffering. After being back on Enbrel & getting Prednisone rx, I feel more like my old RA self!! Never thought I'd welcome that! One question - do you believe that if one faithful follows medication regimen & Rheum. directions that an RA patient can avoid being crippled to point of needing a wheelchair? This troubles me greatly, but I hate to even ask for fear of the answer. Thanks to all for info & support.
 
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smporter replied to phylra's response:
Phylra, I shared your concern. When I first got sick, I felt awful, my whole body hurt, and I was miserable. I was treated for depression, and the medication helped my energy, but I still ached. I had seen the ads that said "depression hurts," and attributed it to that. When I finally saw a rheumatologist and was diagnosed with rheumatoid disease after foot surgery, I had visions of multiple surgeries, being unable to walk, and in a wheelchair again and again.

I naively hoped that the prescribed medications would return me to "normal," and was disappointed when that did not happen. I was lucky enough to do a few things that helped me over several years. First, I talked to a very good therapist who supported me with grieving what I had lost, especially my job. She got me to focus on what I could still do, and helped me to adjust to pacing myself and living my "new normal."

I also participated in several "Living Well" workshops on chronic diseases, pain management, and arthritis with my state's Department of Health and the Arthritis Foundation. I met other people with similar challenges both in person and online, and in six week sessions, we learned about self-management of our conditions, setting goals, and setting ourselves up for success. Look for them online, and if you get the chance to participate, I enthusiastically recommend them.

Lastly, I learned that the course of rheumatic diseases are highly variable. Rheumatologists treat patients with disease-modifying anti-rheumatic drugs (DMARDs) and biologics, trying to match the best treatments for each patient in the best dosages at the best time to slow down progressive joint destruction.

Unfortunately, there are no guarantees, but overall, there are fewer rheumatology patients in wheelchairs today, so that's good evidence that these medications are making a difference in the course of the disease. So that gives me hope.
 
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phylra replied to smporter's response:
smporter - Thank you so much for sharing all of that information & personal experience. I greatly appreciate the help. You know, we hear bout keeping a daily log of symptoms/relief, & develop a mindset of taking one day at a time, doing what u can to get through, but we must think of future quality of life. That's why I accept the risk of biologics & Methotrexate & agree to use Prednisone when I flare. Benefits outweigh the risk, at least for me. The stronger you are - mentally & physically - the better off you'll be. I'm concerned bout getting some type of regular exercise but don't want to stress already sore joints. Does anyone have a suggestion? I'm guessing walking is good; what else? Thank you to all who share!
 
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elwood11 replied to phylra's response:
I was happy to hear that other people have these "flu" like symptoms. I never associated with my RA...I call it the crude and it seems to happen about every 3 months. Causes extreme fatigue, headaches and backaches. I don't eat, just sleep from 2-3 days. I had often wondered if it was a side effect of my RA. Thank you for sharing!
 
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smporter replied to phylra's response:
Walking is good, especially with the weather warming up. I wear a pedometer to count my steps and motivate me to move.

Best for me is suspended movement in a therapeutic heated pool (about 86 degrees) at my local family Y. My favorite is water yoga, which starts with standing or suspended or cardiovascular conditioning and adds yoga in the shallow water--no inversion poses of course

They also have a therapeutic workout with light cardiovascular, range-of-motion/ strength training, and balance and flexibility exercises. In the past, I've taken regular water fitness classes with cardiovascular conditioning and muscle strengthening.

I've also taken, and recommend Tai Chi Chuan (Tai Ji Quan) classes. The CDC has promoted Tai Chi for fall prevention, and the Arthritis Foundation has a video. Tai Chi is both strengthening and meditative. Again, I've found classes at the Y and my local senior center.

Since I will not exercise if it isn't fun, I bought a crank forward bike that is easier for me to ride with my grandchildren. It's a longer cruiser/comfort bike with the seat moved rearward on the bike, so the seat is lower and I can put my feet down on the ground. Mine also has a back rest, so it's offers more support.

Some days it's too hard, but if I can, I try to do something!
 
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An_257369 responded:
Phylra

I was recently diagnosed with RA. Still very surreal. Somebody pinch me and maybe I'll wake up. About 16 months ago I thought I was coming down with a bad case of the flu. The only flu symptoms I had were the body aches and pains. It one day just migrated to only my joints. I thought I would knuckle through it. Finally going to the dr and after a few test. PMR was what he thought I had. Sent to a rheumatologist and a year, 2 frozen shoulders and a couple of flare ups later..... I've been on prednisone, slowly getting less and last month I started on methotrexate-83D-E1E. Ive been pinched. But it was by my own joints. I read articles and was told about these posts. I'd love to find a support group. I feel the need for personal knowledge. This RA is for the birds. Sorry I think I went out in left field


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