I know that everyone here is living with Arthritis, but how many of you are living with RA? I am just wondering. What do you do to deal with the pain, and what other issues come along with the RA for you? Personally, I have a host of digestive issues that my doctors have traced back to my RA, along with occasional depression creeping in due to the chronic pain.
Hi Miska, although I can't directly relate to the RA, I do feel that I've been developing arthritis for some time. I continually feel joint tightness and some pain. May I ask what were some of your initial signs of RA?
Puppydoglvr:
Thank you so much for your kind words.
I can’t actually remember what any of the inital signs were, as I was only 2 years old. My mother tells me though, that she started asking questions because I had a few funny brown spots on the bottom of my left calf. They were referred to a dermatologist, who sent me for blood work, had my RH factor checked and from there it I went to my Rheumatologist. Everyone has an RH factor, but when there is a flare, the factor is high. Ask your dr. for blood work, they also usually check the joints and the mobility in the joints affected. I do remember as a child that they asked lots and lots of questions. To this day they always check my joints. I am not exactly sure what they do for other types of Arthritis, but I must assume it is similiar. RA doesn’t just effect the joints, like say Osteoarthritis, which is general wear and tear on the joints and is most common. RA can affect your organs depending on the progression of it. I have had to have my heart checked, my eyes on a regular basis, and I have a host of digestive issues. If you think you are developing arthritis, go to your dr and ask have your joints checked, X-rays, MRI, and don’t forget to ask lots of questions. Knowledge is power. Good Luck.
Dear Miska, I have severe RA too. I've probably had it all my life but wasn't diagnosed until 2001 when I just couldn't tolerate the pain and fatigue anymore. I have the highest Rh factor ever recorded. It's not a contest I chose to win though!! lol
I am in a wheelchair and need both hips, knees and shoulders replaced but I haven't been strong enough for major surgery yet. My feet and toes are twisted and I can no longer stuff my poor feet into tennis shoes. My hands also are twisting and painful but I still manage to make them work no matter what. I've chosen some meds that improve my quality of life but may shorten my life and I'm fine with that. My organs are all affected and day to day things are a struggle but we've been fixing up my home to make my mobility better and I feel so much more "valuable" to be able to do so much more.
I have 6 children, 4 of whom all have auto immune disorders from Lupus to RA to IH etc... We plug along though and we work together. It's funny because we have been making things work for so long it's natural to us but we catch people watching us getting groceries of even just getting in and out of the van because everyone just has their part in making it work and we don't find it odd or special! LOL People come up to us all the time and comment about what an awesome family we are. It's just our "normal".
I hope you doing ok today!!
A sister in RA, Suzee
Hi Suzee;
It is nice to find folks that understand what it is like to live every day with the pain. I have had this my entire life and my parents never let me feel sorry for myself and let me do everything on my own, which happened to make me a fiercly independent person. I have lived and pushed through the pain for 33 years and until recently didn't know the meaning of taking it easy and pacing myself. I routinely over do it and find that I can barely move the next day.
I would have to say that one of my biggest frustrations and pet peeves come from people that treat me like I am making it up when I am in a lot of pain, and have to submit to making a comment about it or my inability to do something because of the pain. On the outside I look fine, always have. The joints that affect me the most are covered by clothes, so people can't see that my spine is slowly curving to the right, that my knees are red and swollen. I think it is easier for people to understand when they can "see" what is wrong with you.
I have 2 beautiful, very helpful kids, and luckily neither one of them have RA or for that matter anything wrong. Although I did have my daughter's RH factor checked as a small child, because she was complaining about pain in her legs. Thank goodness, she is fine.
I am not going to lie though, the thought of RA in my back is scaring the crap out of me right now. I have been ordered not to start any exercise until I get to my Rheumitologist, but at the rate I have been feeling lately, that worries me a little. I am terrified of loosing my mobility, mind you I am not very mobile these days anyway.
I keep plugging along though, I do light housework everyday to keep myself moving, and I remember to take regular breaks and no heavy lifting. The one thing I find the hardest is the dependence I am feeling on my family right now, but they are great about it and always willing to help, I just need to remember to ask for it.
Hope you are having a good day too. Thanks for your kind words and suppport.
Michelle
Michelle, you are truly an amazing RA warrior!! It can be so hard when people don't "see" how bad the pain is. I think about it sometimes and I honestly think that it's sooooo hard to even imagine that people who do not live with it cannot really ever understand it. I think sometimes too, some people cannot handle believing it's true because it would kill them to know someone they love experiences these things. It's strange the way different people handle things.
I always kind of laugh because my doctor told me once that typically people who don't believe you about things, think that way because they themselves would make something like that up!! LOL That has stayed with me for years now! It does put a different spin on things in your mind when that certain person is making comments etc... You just smile at them knowingly... it really throws them for a loop! hehehe
The subject of pushing too hard..... Oh yes, that's a big one. I have hurt myself so many times by being "tough" (aka STUPID) about a million times. It's hard to find the balance. The fact of the matter is, that our bodies are constantly trying to heal, and we are not as physically strong as healthy people or people who's diseases are not severe. I am so guilty of overdoing. I will get on a good ole prednisone spike and think I'm wonder woman!!! The next 7 or 8 or 25 days of sheer hell in pain and exhaustion that makes me too weak to hold a full cup of coffee, are terrible. I've learned to try and pace myself and somedays, all I can accomplish is folding one load of laundry and homeschooling one of my sons. I make some jewelry and I find myself feeling productive and content.
I have alot on my plate right now so good ole arthur is having a field day with me. Stress and anxiety surely can take us to the floor.
Thankfully I get to see my baby granddaughter quite often now and I swear she's my best medicine. Her smiles and giggles bring me such joy. She is the love of my life!
Please don't feel bad about needing your family. Believe me, they are happy to do it and it actually makes them very special people in this world who can handle and deal with more than your average human being. In years to come, they are going to be so glad that they could help make things easier for you. Dealing with this illness is a "family accomplishment" and from my experience, my children are so glad that they've been able to know that they do and have made a difference in my ability and amount of pain. They feel better than just watching you struggle and feeling helpless.
Anyhow, there I go again, rambling on...
Is fun talking with you! Suzee
Just got diagnosed with RA about a week ago. Waiting to go see the RA specialist. I must have had this condition for quite a few year as I was in so much pain, but i just kept blowing it off, and my friends and relatives I think they thought I was nuts, how can you be in pain so much and so often. Well about a month ago I could not use my left hand at all, well I blamed it on everything under the sun. Finally went to my regular M.D. He was smart enough to run the blood tests, sure enough RA, so now I am waiting to get in to see the RA Dr. Mean while my pain seems to be getting worse, I cry over nothing it seems and can not sleep.All i am on right now is vitamins and Ibuprofen's, the M.D. gave me some Prednisone I hate that stuff, it whacks me out and I feel out of control. Well anyhow glad to read al about what everyone else is going through too, as I thought I was alone, but now I see I am not.I just want to get my self stronger as I am having such down days lately, and can't wait to get to the RA D.r.
Kay60
Hi Kay60! It's nice to meet you! I'm so sorry that you are feeling so bad. I would love to tell you that your rheumotologist will give you a magic pill and you'll be climbing mountains by next weekend, but that wouldn't be the truth. But there ARE many new meds for this disease.
I feel like I should tell you that how you are feeling is completely understandable by anyone who's lived it. If you can tolerate it all, please take the prednisone. Truly you may begin to really feel much better if you are able to get through the side affects. Typically with pred, your symptoms will subside over a little time.
I think a really important thing to do is research this disease and the new meds out there etc.. it will help you understand things when you see your rhuemy and you will be able to begin participating in your treatment right away.
Most of the RA meds, take quite a chunk of time to begin to work. I know it's hard waiting but it takes some time for meds to work. That's why the prednisone is probably your best bet for now because it can take a while for the docs to find the right "cocktail" for your body. We usually end up with 2 or 3 meds for RA. I've had wonderful results with Enbrel but insurance usually makes you try the other less expensive meds first like methotrexate, plaquenil, arava, and some others.
When you begin DMARDS and biologics, and find the combo that helps you, you will begin to have less bad days... then you will hopefully get more good days than bad. Some people are able to do really well and actually function quite normally. Again, it's all so individual for each of us. What might work great for one, doesn't do a thing for another.
How long do you have to wait for your rhuemy appointment? They can take a while to get into. I hope it's not too long.
Let me know if I can help you with any questions. I don't know everything but I would be happy to share whatever info I have.
Nice to meet you! Suzee
Today is a new day!!!!
I am feeling like a whole new person today, it is so wonderful, meds are working, side effects are mild and not so bad.
Most of all, no pain at all today, this is truly a great day.
I feel like this is the day that the Lord has made, let's us rejoice and be glad.
I thought there for awhile that I had lost sight of myself, but I am back, and it is great.
Thank you everyone for your great support.
God Bless
Kay60
Hi Kay60 I hope you are still feeling better! What a gift a good day can be!!
Am hoping all the RAers are doing ok. IT's been a long, long winter for most of us gimps. I am SOOOO ready for spring! I can't wait for warmth.
For now, warmth comes from my heatin pad and my poor feet are needing heat badly!!
Hope your days are going well!
Suzee
I Want To Know
I want to know, when day is done,
That life has been worth living,
That I have brought somebody joy
Through kind, unselfish giving.
I want to feel, when evening falls
and shadows quickly lengthen
That I have made somebody glad,
Some weakness I have strengthened.
I want to know that come what may
I've left some cheer and gladness;
I want to feel at close of day
I've banished someone's sadness.
I want to feel at close of day
That someone's cares were lighter
Because of kindness I have done,
May someone's life be brighter.
God Bless you all
Kay