Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I decided to look for a support group, although I am not usually one to ask for help or look to others for support. I have friends on facebook but I can't really talk about this stuff with them because some of them are from my work, and I really don't want to publicize my misery when it comes to a disease that could affect my future employment.
I am 59. I've had RA since I was 15. In those days, the only thing they could do for you was tell you to take aspirin, which made me sick to my stomach. Through the years, I've been on massive doses of ibuprofen, Methotrexate, oral gold, Cytoxin, Prednisone, Indocin, Imuran, Humira, and I'm just starting to take Leflunomide.
I live alone, although my son and grandkids live fairly close by. I am not a social butterfly. I usually enjoy being alone, but lately I've felt very depressed and alone in my misery caused by my RA. I was doing fairly well this last June, on Humira only, and I wanted to get healthier so I joined the local Y and started taking a water aerobics class. After two weeks, I had the beginnings of a really bad flare-up and had to quit. I thought I could get it to calm down by just laying off the affected joints, but it just kept getting worse. I just saw my RA doc yesterday and he started me on the Leflunomide in addition to the Humira. I know it will take 4-6 weeks to notice any improvement, and I've been trying to "tough it out" since August anyway, but this is such a lonely, sad battle for me (again).
Anyway, I came here, just to say "I'm here" - feeling really low, and would just love to hear a few encouraging words from others who know exactly what I'm going through. I'm sure I'll be fine again soon. Thank you.
I am 59. I've had RA since I was 15. In those days, the only thing they could do for you was tell you to take aspirin, which made me sick to my stomach. Through the years, I've been on massive doses of ibuprofen, Methotrexate, oral gold, Cytoxin, Prednisone, Indocin, Imuran, Humira, and I'm just starting to take Leflunomide.
I live alone, although my son and grandkids live fairly close by. I am not a social butterfly. I usually enjoy being alone, but lately I've felt very depressed and alone in my misery caused by my RA. I was doing fairly well this last June, on Humira only, and I wanted to get healthier so I joined the local Y and started taking a water aerobics class. After two weeks, I had the beginnings of a really bad flare-up and had to quit. I thought I could get it to calm down by just laying off the affected joints, but it just kept getting worse. I just saw my RA doc yesterday and he started me on the Leflunomide in addition to the Humira. I know it will take 4-6 weeks to notice any improvement, and I've been trying to "tough it out" since August anyway, but this is such a lonely, sad battle for me (again).
Anyway, I came here, just to say "I'm here" - feeling really low, and would just love to hear a few encouraging words from others who know exactly what I'm going through. I'm sure I'll be fine again soon. Thank you.
I hope the meds help with this flare you are having. My son has had Ankylosing Spondylitis since he was 11, so I get the isolation you might feel. He never wants to talk to anyone about it. He is 32 now. I have not heard of the drug you have been started on, will have to look it up, but know you are not alone! Debbie
Im 50 yrs old and recently diagnosed. I have had degenerative disk disease in my back and spine for many years but started going downhill this year with everything else (all other joints, etc) thus leading to my final diagnosis of RA. I know that it is very, very, isolating as it feels to me as I have had to stop doing a lot of the things I enjoyed doing with others at the local police dept where I volunteer a lot of my time. So most of my friends try to be understanding but its hard being the one in the group thats always sick or hurting so I tend to stay away.
Im like you to where I dont want them to know the extent of things. What preceded my diagnosis was I had also started at the YMCA in the aqua aerobics and I guess I didnt listen to my body. I took pain medication before I went so it masked the pain signals to tell me to stop. Thats when everything fell apart. I know that wasnt the cause but it did lead to them finding the RA as everything else fell apart after, so I guess that was lucky they found it.
Im very sorry that things got bad again. Its scary and it makes me so angry at the illness and angry at all of these pill bottles, angry at the side effects, angry at hurting all night. Worried if I can support myself, etc. So what I have learned is that to plan me-times whether alone, or with my adult daughter, or maybe with friends if its a real good day. It may just be a hot bubble bath that I splurge on Bath and Body Works for, or it may be a sappy love story DVD with hot chocolate and marshmallows. Or I may have a friend pick me up to see a 5.00 matinee by me. These things I can do unless its a real bad day.
I have to start learning to ask for help and thats very difficult because I was always the one doing the helping and my very first reaction when people offer is to say no. But its hard but Im very beginning to learn that its ok. My grandkids live an hour away so when they come we do crafts at the table then watch movies.
Ive learned this is a great place to vent. I dont post a lot since my hands swell but I do gain a lot of wisdom from everyone here and when Im not too sleepy I go through older posts and get some good nuggets of wisdom there. Sorry this is so long. Your post spoke to me. HUGS.
The ups and downs of this disease constantly amaze me too. I posted earlier how the MTX was really starting to help me and how I was starting to feel like me again, aaannnnddd I've now been in a flare for the last 2+ days. I know it was stress that brought it on and I've really been struggling.
Know that we understand in this forum, so if you're lonely, pop by and say hi. There is always an encouraging word.
Take care!
The only thing that works for my flares is cortisone shots. Last visit, I told him Christmas was at my house and fix me up. He gave me 3 shots, I feel great, for now. I was in a pretty bad flare, it calms it completely.
My orencia works, but I still get flares too. Not in remission, but happier. Your never alone here!
=)
Lin
RA is a beast of a disease and it is isolating but having this group is an amazing support.
Interesting that you, and another poster, Delkins, both started Aqua aerobics and that's when everything fell apart.
Gentle hugs
I would like to add my welcome to the group. This is a kind, informative, and understanding bunch of peeps.
I also don't like to discuss my problems at work as I am more of a private person and like to keep my work professional. The opposite is true as well: I don't bring work home and don't discuss it with my wife very often.
I really enjoy my downtime as well and am very comfortable being alone.
I look forward to hearing your experiences and any additions you have to the discussions.
Regards,
TheWino
Morgan617, my heart goes out to you and your son. I know we wouldnt wish any of these autoimmune diseases on anyone, especially our kids. Leflunomide is a DMARD in the same class as Methotrexate, which I cannot take at all (it caused constant nausea and possibly the kidney issues that sent me to a nephrologist for over three years).
Delkins63, thank you so much for all you wrote. I understand exactly how you feel about having to stop your volunteer work. I had been volunteering for the humane society for the past year, and I just had to quit that (for now). I do not think it is a coincidence that we both had flare-ups after starting the water aerobics classes. My doc told me on Friday that it may not have had anything to do with it, but I know better. Ive seen direct correlations from jarring activities in the past that triggered flare-ups for me as well. I worry about supporting myself too. I have been working since I was 18 and just hope to be able to continue as long as possible.
Indycarr, I find it interesting that you have seen a relationship between emotional stress and your flare-ups. My husband passed away in 2006, my mom in 2007, and my sister in 2011. You would think that grief would have caused flare-ups for me each of those times, but it didnt. I have always found that physical events have triggered mine. I even think a car accident I had at 15 may have triggered the initial autoimmune response.
Dreamchaser Linda, thank you for your support. You obviously have this much worse than I do. I have never been in a wheelchair, although one year I did have hip involvement and difficulty walking (I was 23). Back then, I had to learn to never sit in one position too long and to listen to my body to make sure my hips werent in some odd position. For me, for the most part, that kept my hips unaffected (knocking on wood, here).
Trishcorsi, I understand about the housework! Oh my. I love a clean house, but I have just been letting things go a bit more lately. It seems every time I vacuum or clean a bathroom, I pay for it dearly the next day. I love cooking too, and that always ruins my hands and wrists for the next few days.
Angelpuss, thank you for your warm welcome and support, and please note the response I wrote above to delkins63 about the water aerobics connection (my take on it, anyway).
Thewino, thank you for the welcome as well. I wonder if there are any personality traits that are common among those with RA. I dont know that many people who have it (until coming here), so I dont know if there are as many extroverts as introverts with it. I am definitely an introvert by nature.
Nipper69, thank you. I already feel so much better (in my heart) after seeing these wonderful, friendly, and informative posts. Im so glad I decided to join, even though it took a very low moment for me to take that step.
Annettearizona, thank you for your direct response to my feeling depressed. Actually, I have had to tackle that, off and on, my whole life. Sometimes, the RA just compounds it though. Yes, as soon as I can get some relief from this current flare-up, I plan to get back on my little portable elliptical machine. Right now, I just feel like I am turning into a weak blob, as walking even hurts my feet so much. Thanks for the encouragement.
welcome
welcome
welcome
we are glad you are here.
you can share so much with us in your 44 year journey with this disease.
do you feel that the Humira is the biologic that works for you? you've been through all the dmards for sure.
I am glad you found us. I am sorry that this is a low period for you.
Good for you that your son and grandkids live close by.
sorry that the Y water class set you back. when the flare backs off hope you find something else at the Y that suits you. I love the Y's.
Ros
I am sorry for your losses in the last few years. I also have had 3. MY dad died in 2007, my mom 2009, and my sister last year. My sister was completely unexpected and it has taken a toll on me. I wasn't diagnosed until this year with RA but I do wonder if all of that grief played a part.
I hope u have a good night- Donna
So glad you came here. We all need someone who actually understands! Myself, I'm on here off and on, but whenever I need the support, it's here. This is a great group of people!
Don't give up hope. I had reached the point where I could barely walk and finally decided it was time to change doctors. Thank God I did! My first rheumy had me on plaquenil and methotrexate (which completely wiped me out) but I continued to get worse.
Second doc is wonderful and immediately figured out from a simple xray that I have a great deal of damage to my knees from osteo arthritis and the RA has caused no permanent damage yet. He changed my meds to Arava, plus CosaminDS for the osteo and I am in very little pain after just a two months. We just have to find the right combination of meds that works for US.
It's absolutely normal to be depressed; I am on meds for it myself and they help tremendously. (I also have a severe case of Meniere's Disease that is the main cause of my depression.) Hang in there and keep us posted. The nice thing about this group is that you can count on someone trying to help. Welcome again.
Merry Christmas and God bless,
Marlene
Delkins63, thank you for your compassionate note. I am very sorry you have lost so many people recently too. My sisters death was unexpected as well, which makes it that much harder of a loss. Im sorry you have been diagnosed with RA. Like my doc says, you have to take care of your whole body, because RA wont kill you. (It will certainly make you miserable, though.)
Marleneg, thanks for the encouragement. That new drug my doc has me on is the same thing as Arava, so I am even more encouraged by your success with it.
Welcome
Be well
Bluedogs2