How long.....? | Arthritis Information

Ok, so I know that RA is different for everyone, but how long does it take, in general, for RA to have lasting negative affects in your life.

I know I've posted this a zillion times (give or take), but my RA hit me suddenly, very hard, about 9 months ago. Except for the occasional flare, and sometimes some relatively minor aches, and the addition of two shots every Friday, my life goes on pretty much like it always has.

I see that most, or at least many, here have daily problems that impact their lives greatly. Did it start out that way? If no, how long did it take to get that way?

Do people ever go on throughout their lives like I am now? Or is degeneration of my joints pretty much a given?

Linncn39421.8041435185

Linncn,

Great question!

For me, I have gone about business as usual, but with more difficulty. I can say that my general feeling of wellbeing is not as good as it was for about a year before I was dx. I deal with fatigue and general feeling of YUCK daily, but as far as major flares, I have only had 2 in a year. I consider myself lucky compared to many others on the board. However, I have to go on. I don't have any other choice. I have to work and I have to pay bills, so I just knuckle down and do it. I am in a lot more pain than I thought I would ever "live" with. some days are better than others. It is always on my mind though, because it reminds me when I squat, get up from a sitting position, open a jar, type, the list goes on and on. I was dx with severe RA, and it hit me like a ton of bricks. I knew something was wrong for approx a year before dx, but it was nothing definitive and I thought it was stress.

I'm interested to hear what others have to say.

Phats

Great question, Link and it will be interesting to see the different responses that every has.

For me it has been debilitating, life shattering and life changing.

I believe mine was triggered by a bout of pneumonia tens years ago. I believe it was already there and I had had some previous degenerative phases of approx a decade each but the pneumonia was the final straw.
I got increasingly worse over eight years with no one picking up there was anything wrong accept me. After Neve was born I flared, they didn't know I had it but no I can see what happened and they thought I had post natal depression so they started keeping a close eye on me with weekly appointments, gradually I was so disabled I could pick up my two year old or hold a knife and fork, I dropped things all the time, it was affecting my speech and I was night blind. At that point I was dxed.

By the time Neve was born I was too the stage where I couldn't work. I wanted too but couldn't. I can't now. There simply is no option of that so Neve and I survive on a limited income, just.

It changed everything...it affected all my competencies, my parenting, my writing, my ability to self care. It has been enormous change. There are so many things it has changed and I won't even begin to list them.

I have grieved and am still grieving for the loss of my life as it was. I used to sing...act...I can't do those things now. It has just been so so hard to come to terms with in so many ways. And I still am, very much so, grieving and accepting.

I have been stuck in bed being pushed to roll over and i have been as well (on meds) as to shop, all in the past 3 years.

It comes and goes, changes etc. for me so every day i take one day at a time. But one thing always stays the same.... me.

I go go go go. If i can't walk, I go where there is a driving buggy. But I go (not if the pain can't be controlled of course).

Things did change though. I used to go out on weekends to different cities for fun, no longer. What i do is always around town. But we hit movies, restaurants, shopping etc.

You can't let it get you down unless you can't move. You HAVE to keep going, or it will not only take you over, but will kill who you really are inside.

So I go, go go go.

I do have to admit, i can't work anymore, can't stand for longer than 5 min at a time in one place etc. But, i do my best to work around standing and my husband now is the full support of our family. Something i am blessed to have.

bubbagump39421.8252777778Phats~ yeah, I do notice my knees, elbows and wrists aren't like they used to be. Sitting for a while is hard on my knees when I start to move again.HI Linc, for me its similar to Cordy, I have had this for going on 8 years, and that was when I was diagnosed as having severe RA, I must say everyday is a challenge, not only for me but my poor hubby who has had to pick up all the jobs I used to do. I tried to work but could not function with the pain and disability it caused, I became too unreliable and my memory was getting worse, none of the dmards have been good enough and I am allergic to practically all drugs except steroids, most days I have to go to bed for at least an hour, sometimes up to 4 hours because of debilitating fatigue. On a "good" day where the pain meds seem to be working, I go out on my mobility scooter and meet friends for coffee, go to the library, do oddjobs that are not too much for me. I use up my energy and find I am exhausted literally after that.

Just now I am changing my bed sheets etc and I have been doing it in stages as it is too hard for me, but I like to feel useful. My hubby says don't bother as he suffers more if I suffer more by overdoing things....... and to think I was an athlete with boundless energy, with a great career in health insurance (sorry, bad topic at present) I hope yours does not escalate. Best of luck Janie.
I'm glad I can still work. It is the only way I am dealing with this dreaded disease right now. I have the type of personality, that if I didn't work, I would fall into a deep depression and probably never get out of bed. It is a grieving process and one that needs to be visited every once in a while because it is in constant motion. I agree that you have to keep fighting it because if not, it will beat you. I sure did find out how strong I am, because it takes every bit of strength and will to make it thru some days.My RD said that I'd be surprized how many people just give up after dx. He was saying that he was glad that I was "a trooper"! You can't help but to wonder what life will be like with RA, say 5 years down the road. What will I be like then?

Since I was only DXd six months ago, I can't speak much from personal experience yet. But my sister was hit with RA like a ton of bricks eight years ago and she's doing great. She's still very active and I don't believe she's given up anything that she used to do. Before she started her meds she was sick in bed and could barely move. If she sat in a car for more than a few minutes, she couldn't get out without help. It took a while to get the right drug mix, but when they did, it brought her back to her old life.

My niece was DXd with lupus several years ago. She was on medication for a while but stopped and has been doing fine ever since. I don't know how she achieved remission, but apparently she did. The experiences of my two relatives makes me think it's not always inevitable that the disease will continue to degenerate our lives. There is hope.

Thanks, Jesse. That's encouraging to hear. Your sister sounds a lot like me in the way RA hit. The meds brought me pretty much back to normal too.

I heard and read several people/dr's say that the first few years are the worst and that is when the most damage is done. Don't know if this is true. It hit me like a mack truck and for the past couple of years. I recently started enbrel two weeks ago and the first shot I took, I felt amazing the 2nd day after shot! I am waiting to see results tomorrow on 2nd shot. I have tried lots of meds, and have been allergic to a few, a few didn't work and now, I don't know yet. My energy level has went up. I actually had not stiffness last week. I don't want to jinx myself, but like I said, too early yet to tell.

I am interested in other people's stories that have had it longer than a few years. Anyone??

Hi Linn. I just wrote a very long response to your post and when I read it , it seemed so discouraging that I just couldn't post it. That is not what you need to hear right now.

We all have different responses to this illness. And they can change from day to day, or week to week. I think we go through the stages of grieving, basically, until we get to acceptance. That doesn't mean give up. Just accept that our life has changed and go about building a new one, with the abilities we have. We will respond in many different ways, because we are all different people.

Some of us have had it diagnosed early enough to be treated so that we won't have such severe damage, at least not as soon as some others. Some will be able to continue to work and be able to control the pain and fatigue with meds. Some will still be able to exercise regularly, which would be very good for us. However, others just do not have the ability to exercise. Some will have milder flairs and others will be completely disabled by them.

I would say to keep all you RD appts. and take an active part in your treatment. And after you go through some of the stages of realizing you have a chronic illness, just try to live your life the best way you can, to the best of your abilities. Hopefully the people in your life will be understanding of your illness and try to help you deal with it.

I know I went through a deep sadness. Especially because I was forced to acknowledge that my hands were finally so bad I could not crochet, embroider, garden, paint, or even hold onto a glass without dropping it half the time. But I'm in the process of having surgeries to help repair them. Maybe I'll be able to do those things again. Maybe not. If I can't, I will try to find something else that I enjoy.

The meds. we have today can do so much more than just ten years ago. And they are still developing new ones. So I would say that there is a possibility of controlling the erosion of your joints. It just depends on the person and how they respond to the meds. Some of us also have other problems that may add to our disability.

But just work with you RD and keep up on the treatments available. No one can really predict how we will progress. Just try to keep the faith.

I hope you continue to do as well as you have been.

Hugs, Nini

My life has been drastically impacted I think, but since I was young when diagnosed I've been mercifully spared from realizing how different my life might have been most of the time. :) For me I'm just so tired all the time, and generally achey. I have what I think they call malaise, that flu-like feeling, a lot of the time, probably about 3 days per week. Luckily I've never had very severe swelling or joint deformity, just this over all general achiness and feeling of ickiness.

Nini is absolutely right, and thank you Nini for your kind words. There's hope for you to keep your life together in spite of RA. I think of it almost like having diabetes-- it affects you everyday but if you stay on top of it and don't let yourself slip too much as far as remembering to take care of yourself, then you can almost lead a normal life most of the time. It isn't much, but it's enough.
Thanks Nini....I don't think you're ever discouraging

I did have 4 months where I was in great pain and could hardly move. Spent most of it in a chair. Even laying down proved too painful for my shoulders. I have had a glimpse of the life you are living. I wish I could do something to help, but please know you are all in my prayers.I was diagnosed when I was 3 (now almost 24) so I don't actually remember life before JRA. I've had both hips replaced, multiple other joints affected. I can't really answer your question of when it changed my life because I've really never lived without it. My parents did a very good job of not giving me any special treatment or sympathy because of it and I think that's what made me who I am. A problem that I notice with people who are dx'd at a later age is that they let it control them with the whole woe is me why did this happen when really there's nothing you can do about it. I personally think living with this disease is about 80% mental, basically if you're not willing to let it control you, it won't. Well...my symptoms began around Jan of last year. Felt like I was trying to get a bad case of the flu for about 6 weeks. I finally woke up and said, "what the heck is going on"? Made an appointment with my PCP, he took blood work and sent me home with with some anti-inflammatories. Called him next day and told him it was not helping. He gave me a prescription of Prednisone. Took it and was much better by that evening. My blood work was negative for RA and Lupus, but had elevated inflammation levels. Sent me for carpal tunnel testing because both wrist were very painful and would get numb. Had carpal tunnel in both wrists and same problem in elbow. He then sent me to an Ortho. He took x-rays and thought that I needed to see RD. Made appt...was dxd in April with sero-negative. RD has been trying to get it under control ever since.

The way I describe it is my joints are playing "Marco-Polo." It is mostly in my feet and hands. It is very difficult to walk and makes exercising impossible. I am starting an Aquatic Program to get my exercise. I pray they find a cocktail that will work soon...The lack of energy and gumption does not go over very well with a three yr old.
I fight every day, no way will I ever give up and I believe this is going to get easier...it has too but I so relate to the way Janie describes the bed making challenge...it's exactly the same for me. I am in a place where those tasks people don't even think about, I have to break down into stages...and bed making where you have to change the duvet cover...OMG, I would be exhausted for an hour after it at least. I really need someone to help with those tasks.

It's a long way from the Youth Worker who could run a house of ten street kids at once or the Domestic Violence Worker who could run an entire refuge with five families in on her ear or the writer who wrote 10000 words per week or the secretary who ran a busy office without even raising a sweat.

All people I used to be.

My life has changed in many and varied ways. My job is trying to accept what I can do now and keep hope and faith alive that things for me will improve as I move on through my journey with this disease.

I try to go, go, go... but it is hard to do sometimes when your RA is not under control.

It seems your is fairly under control, Link. And that will help you in the long run. As far as how it will change for you there is no telling. But it seems you have a good shot at it not getting to the point as many of us on the board.

I hope you continue to do so well, and I hope in the very near future you go into drug induced remission. From what I hear it is very likely for you since you treated it within the first year of on-set.

Don't make me start on those commercials again [QUOTE=Linncn]

Wow...I feel a little self-centered right now. Nini, Amber, Janie, Cordy, Bubbagump ( please forgive if I missed someone). You are all facing struggles more challenging than I am at this point and not a word of encouragement from me to you.

[/QUOTE]

Please do not feel like you are being self-centered. You are giving lurkers and everyone else on this board HOPE. You are showing what biologicals can do for a person when treated. So please do not feel like that.

I have never took your good results as anything but good news. You are not glotting you are just stating what your treatment has done for you. If anything you are encouragement for other who are either afraid and/or in their darkest hour of the diease.

I was first dx in 95 and to be honest, other than my thumbs and hands noticibly bothering me nothing much happened til 2004 and then it hit with a vengeance.. for a while there I needed a wheel chair and help eating..

now, on remicade I am doing sort of ok.. more goodish days than bad..never pain free but able to walk again. but yeah 10 years til it had a real impact on my life and then it all crashed down.

It has completely changed my life. I was extremely active, worked too hard and too much (but I really enjoyed it), learned to sail when I was 45 and spent a lot of time on the water from March to October every year. Extremely independent and the person everyone in my circle of family and friends cou.nted on in a crisis or even just to help with small things.

The story of how I got to where I am is too long. But I was diagnosed on February 2, 2003 and things have never really been the same.

First let me say I am so glad that things are going well for you Linccn. I love to hear stories about the meds working and people being able to go on with their lives.

The part that some of the posters have mentioned that I find personally upsetting is that if we are not doing everything in the world to get better that we are letting the disease control us. I think I am not saying this right. I get the impression from some folks that if you are not getting out of the house and exercising, going places, etc., you are letting the disease be in control and therefore if you are not doing well it is your fault. If only you would eat right, exercise, loose weight, get out of bed...............all would be well with the world.

I am on part-time permanent disability. I work Monday and Tuesday and half day on Wednesday. My RD would like me to go on full disability (I am fortunate to have a long-term disability plan, I am not speaking about SSDI) but I cannot afford to do that as I would loose 35% of my income. This only pays until 65 so I have ten years to try and save enough to somehow supplement my social security income.

When not at work I am usually at my computer, in my bed or in my bathtub (a walk-in as I cannot get out of a regular one). I walk with a cane and go down my stairs on my butt. Five years ago at age 50 I was still a size 6, the same size I have worn my entire life, I now wear a 16. The sweats that come along with the medications and as a symptom of the disease are so bad that when I am out in public I am constantly humilitated by sweat running down my face and having to ask people to turn down the heat when everyone else is freezing. Put that together with my size and its not a lot of fun to go out, even if I wasn't in pain. Yes, maybe I do let things like that get in my way of living a "full life" with RA, but I really get tired of hearing people blame me for not working hard enough to get the weight off(prednisone is just an excuse, you know), not having a good enough attitude, being grouchy when I am in constant pain and on and on and on........ Sometimes it hurts worse when the blaming comes from others with RA.

Food is one of the few pleasures I have left. Until pred I never had a sweet tooth, well, I have one now. I have a recumbent bike in my room and I use it every day. That is the only exercise I get except my stairs. Attitudes like the ones I hear from RAers and others do more to keep me from going out of house than just about anything else. My body has turned on me and I am in constant pain and humiliation because of it.

I am not asking for pity, sympathy or anything like that, I don't want it. I am asking not to be blamed for not doing more than is possible for me.

See Linccn, this is why I tried not to post on this thread, I was afraid I might spill the beans, as it were.

Thanks for reading.

xoxoxoxo

Very well said Crispy. I was struck awhile ago with ra but we think I have had pa twice as long. It can be so bad some days and others I feel like I am on top of the world. Meds have helped me alot and have made life alot better, but if you had asked me that question just a couple years ago I would have just sat and cried. I could barely use my hands, my legs and knees were no help either and my back was in pain alot. Now at that time I was working, I was stocking shelves at night and going up and down ladders and opening boxes, ec. When I left in the morning I was literally crying all the way to the car. Starting the car took 2 hands and steering made my hands ache so bad. Things are so much beter in the ache problem but now the skin that is another story.... Since ra and pa are doing pretty well, the psoriasis has gone into overload and my skin is just terrible! Almost my entire back is covered with psoriasis, my hips, part of my legs, and my arms too. I've got it on, behind, and in my ears, besides the scalp. We are treating it the old fashion, way uv lighting. It seems to be helping because meds are just not working on it anymore. I consider myself lucky I could be bedridden but I not, I could not have support to help get through this but I do; family and friends, who understand help to make each day a little bit better. There are even days I don't really think about it because I do like keeping busy, am still able to do my crafts, work in the yard, and do day to day things, I have learned I have to just not overdo and I have learned to appreciate every moment of every day. meme [QUOTE=crispy]It has completely changed my life....

First let me say I am so glad that things are going well for you Linccn.�...

I am not asking for pity, sympathy or anything like that, I don't want it.� I am asking not to be blamed for not doing more than is possible for me.[/QUOTE]
My sentiments exactly. Thank you for expressing them so clearly and so pointedly.

Con brio, Happ

I wish I would have had a sudden onset, but I didn't. For years doctors have masked different things with this med and that, and never caught the whole picture(Amercians don't tend to treat wholistically). So, mine would get worse and worse and worse, until last Christmas when my life pretty much stopped because of pain.

I wish I could say that this has not effected me, but it has. My dear hubby has labeled me a Hypochondriac for most of our marriage and now that he can see the swelling and knows the dx it is still in his mind that all those years I was "in my head" sick. I even had a RD that only checked two things, and never took a complete history tell me to come back when I was sick.

I go on now, as much as I am able. PA is very difficult to dx and extremely difficult to control. Now that I am losing my eyesight, and it has it's effect in my internal organs...I guess I have to be careful what I do, without talking much to my hubby about it. So, grieving yes, trying to be functional, yes. Surviving with more pain than a person should be allowed to yes. Felling despair, and frustration...yes. So, I don't really know where I am, but I do know who I am and I am a survivor!

Linncn,
I am like you...I was diagnosed with severe RA a year and a half ago. I was immediately put on a high dose of methotrexate and prednisone....I then added Enbrel and was able to wean off of prednisone completely. For the most part the meds have given me back my life. I was in so much pain before I was diagnosed that it took everything I had to get out of bed in the morning. I was a competitive triathlete so I thought the pain was from overtraining!
I had to give up competing in triathlons...but now I am able to run again and exercise daily. For me, I need to stay active or I would be depressed. I work in the insurance office that I own with my husband and I have two boys that are 7 and 10.
My heart breaks when I read about how so many of you are suffering and I realize that I was very lucky that for right now I have a medicine cocktail that works for me. I sustained alot of damage in my hands and feet...but my doctor is great and is very aggressive with my treatment. For my part, I exercise, see my doctor every 6 weeks religiously and eat a healthy diet. My husband and oldest son have Celiac disease also....so diet is a big thing in our house.
I often wonder how long this will last for me. One of the best things I did for myself when I was diagnosed was to get a long term care policy...so that when things do go downhill I will be able to get help.
I hope you continue to feel as well as you do now....and I hope there are pain free days ahead for those of you who are not feeling good.
sorry to ramble!!
Jen

Thank you all so much for sharing honestly, for not sugar coating things. This is what I wanted to know. I can see that although it varies, RA does not seem to stay quietly in the background forever. I guess for me, and probably others who are just starting out with RA, we will be careful to enjoy and be grateful for each "good" day we have. I hope that in the future, if and when this disease begins to really take it's toll on me, I will handle it with the grace and courage I see in all of you.

Bump

I would like to hear more of everyone's personal struggles.

I guess I have a question...how many of you take a prescription pain killer on a regular basis? I am a little over a year of being diagnosed and on the meds below. I am still in pretty constant pain and I take vicodin on a pretty regular basis. I know the pain gets bad, and as soon as it wears off I know its going to hurt alot. After quiting my job in september I felt that some time off to re cooperate after the physical and emotional stress the job brought would do wonders for my pain....no dice in that area. Three weeks ago I started a new job, in the records department of a health facility. I don't feel that I am over doing it but the pain ( fingers, wrists , ankles, hips shoulders...did i cover them all?lol) is still consistant. I have a RD appointment on Wednesday and I am not sure the regiment is working, I know I couldn't get through the day without vicodin, i would just hurt like nuts. what do you guys think?

Hi, I have been taking vicodin on a regular basis for 2 years now. My ra hit me hard. I woke up one morning with my right hand swollen, red hot, and very painful. I could not do anything with it. Thinking back, I think I have had it longer. I used to have my own cleaning business and would chalk up things to over working. My neck gives me a hard time, I had pericarditis twice, pleurisy, pneumonia many times,appendicitis, my foot hurt and swollen all the different dr's I saw said I worked too hard gave me muscle relaxers and pain pills. My foot never got better, I was sent to physical therapy. Finally the morning I woke up with my right hand all jacked up, I went to prompt care. I told the dr all the stuff going on. He did x-rays and blood work. RA showed up on hands and foot and was 129 ra factor. He started me on relafen and gave me more pain pills and referred to a ra dr. I have tried so many meds, allergic to sulfasalazine, mtx, plaqenil didnt work, minocycoline didn't help, humira for 8 months didn't help and then two weeks ago I started enbrel. The day after the shot I was really dizzy and out of it. The next morning I woke up and felt wonder! No stiffness, no pain and energy!!! I was able to clean house, do the dishes and laundry all in one day! By the evening, my foot was hurting again and took meds. I think it was over doing it.So far, so good on enbrel. Don't want to get my hopes up or jinx myself. LOL

take care and sorry so long

Very interesting thread. No matter how slight or how severe this disease presents, it's impact is heart wrenching.

I had severe back pain, and then had difficulty walking and major leg weakness which was diagnosed as a herniated disk, L5/S1 in 1999. In the midst of being diagnosed one of my doctors ran a RA factor which came back over 900. By this time, I'm homebound and getting ready for a lumber decompression. After back surgery and recovery I went to a RD who put me on antibiotic therapy with no positive results.

After a year of Prednisone I was able to function, then denial hit me. I functioned well with little pain or inflammation for about 5 years then had a sudden onset flare that left me once again homebound and using a walker. I had to retire and resigned from several boards and other civic organizations. RA took over my life. I once again went the Prednisone route.

When I could walk a little I developed a pulmonary embolism and spent a week in the hospital and several months in recovery. A new RD prescribed Enbrel with only moderate improvement. By that time any improvement was good. This RD wouldn't prescribe MXT along with the Enbrel so I felt it was time to seek a more aggressive RD. I found an RD who prescribed MXT and Remicade, I stayed on Pred. and got relief after my 5th infusion. But a year into Remicade it quit working and I've just started Humira with great hopes.

Once I decided that I needed to devote time to healing and became my own advocate, RA became a little less intense and all of a sudden I wasn't defined just by RA. My husband and I both retired and as soon as I recovered from the pulmonary embolism we started to travel. Even with all of the medical issues, side effects of meds, I still travel and volunteer. We live 5-6 months of the year 1,000 miles into Mexico. I'm living my dream, it doesn't matter that I have RA.

I will not allow RA to take over my life and I will not be defined by RA. I'm the same person I was before RA, just a little more of me. I have the same brain, the same heart, and the same values. My core hasn't changed.

My one regret is my 5 years of denial. That period has left me with damage that can't be repaired. I have pulmonary, cardiac, and eye complications. For anyone reading this thread don't ignore the disease, start the medications. I felt because I had no pain and just a small amount of inflammation that damage wasn't being done.........it was, and now I'm paying for denial.

I'm lucky in the sense that I can control the pain enough to function by taking Lortabs. The pain meds don't take away all the pain but just enough that I can get on with my life and enjoy it.

All of our stories are different but the same. There is a common thread that runs through all of the stories and that's hope. Hope that our medications will work, that the disease will just go away, and that someday they'll be a cure. Here's to hope. Lindy

Hi Chris, see my posts on Pain todays date, it explains about my pain meds, hope this helps, hugs Janie. Thanks for sharing your story Lindy. You inspire me.

Thanks for this topic and the many good responses, it is very helpful for the newly diagnosed.

Lindy, your post really hits home. I believe I, too, am in denial. I was diagnosed in August - had a severe intial flare but once it calmed down I was pretty much pain free for many months, and have not been prescribed medication, although my RD feels it is inevitable. Since my RF is rather low at 18.5, and anti-CCP low at 10, I was sort of hoping that this whole scary thing would go away.

But just last week, while on vacation aboard a cruise ship, my left hand became swollen and very painful. It looked like a mitt, and the pain ruined 2 of my 5-day vacation. I have a follow-up appointent with my RD on 1/8/08; I guess it's time to get serious about medication.

Nancy R.39423.4138078704I had so many things hit me over a two year period. I guess Im not sure exactly when my RA actually started. Everything went bad after I had my third last child 2 years ago June 2005. With each of my pregnancies I had PIH (Pregnancy Induced hypertension). High blood pressure and extreme fluid. I gained anywhere from 80 - 100 pounds of fluid with each pregnancy. Anyways, My last was born Emergency C-section and I had my tubes tied. I had lots of sever cramping and bleeding, hip pain and back pain. afterwards and was diagnosed with Adenomyosis and the only cure was a hysterectomy. I had a hysterectomy August 2006. My Gyn. told me he was not sure if that would fix my hip and back but for sure my cramping and bleeding Soon afterward I started having real bad stomach pains along with shoulder, back and hip. I was diagnosed with Gallbladder disease w/ huge stones so that had to come out. That was January this year. Afterwards I still was having bad hip pain and all the sudden around March I started aching all over, it was alternating one day my arm one day my ankle within a few months I started having carple tunnle symptoms and swelling in my hands and feet, numb toes and still my hip and it was getting worse So my dr. sent my to my Rhemy. I was dx'ed a month later with Ankylosing spondylitis and Sero-negative RA. My dr. said that he believed that my weight gain during my last pregnancy is what brought it on. I still hurt daily. I take pain meds daily. I resently started having rashes and had no clue what it was, my dr. said it was psorisis and it was just part of my condition. I have yet to take the next step and start my MTX but im overcomming that fear and have made an appt. to get myself a different dr. and a second opionion. I take pain meds. daily. I have yet to come to grips with all this yet and I have seen no improvements. My life has completly changed in the last two years and I fight depression daily.. I used to love to dance around the house and play with my kids. I dont have the energy or ability to anymore, not yet anyways. I was told my my current dr. that I would probably never see a remission. I hope he is wrong and I pray my life changes for the better soon. On the upside. I have three of the most beautiful and sweet children in the world and a great husband and great Parents. So I have alot to get better for and they are my strength and my drive.
Jojo
[QUOTE=Phatgirl2]

Linncn,

Great question!

I'm interested to hear what others have to say.

Phats

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This is pretty much where I am. I too consider myself fortunate compared to others. Since I was dx 3 years ago, I have only had 3 major flares. Other than that, I'm not nearly as mobile as I used to be. I can't squat down any more, bending over to clean the tub is difficult, specially because its one of those huge garden tubs, and fatigue is just part of life now. I can't lift much with my left arm any more. I love to swim and still do as often as I can, but I can't do free-style because of my shoulders. You learn to adjust, and keep on hoping. Thanks Lindy! Very inspiring post.

I too refuse to be defined by RA. And I refuse to "let it have me". I will fight until I can no longer move, and even if that happens, I will not let go of my peace and my good attitude. It may rob me of many things, but my heart and my peace belongs to me.

So far, I have not had to start prescription pain killers. I take aleve and it works very well for me.

meldozRA39423.5749074074

With everyone it will be different, it depends on who you are inside and what goes on outside. It will depend on if you have help, how much you have to do for yourself, how strong you are mentally and how you feel about life.

All these things come into effect when it comes to if you can make it with this disease or not.

I have met many people in the past few years on the internet who have RA. I have seen many stay at home and never leave even though they could walk the mall without problems, others who are in wheelchairs etc. i have seen as people who go go go.

It will mostly depend on how strong you are inside and how much you love yourself to determine where you will be, and how you will go. Having support makes it so very much easier to deal with, without my family I know it would be extremely hard for me.

When i clean the house, it is in stages. Dishes get thrown in the dishwasher and i have to take a long hour or so break cuz my legs can handle standing. Picking up stuff off the floor takes thought, i moved furniture around so i can sit on something, bend over and pick stuff up. Vaccuuming is hard with the heavy cleaner so i have a light one for regular and the people in my family use the heavy for weekly cleaning, something i wish i could do.

But I go. I dont' want to die before I die. That's just who i am inside and it has nothing to do with who anyone else is inside, that is something they have to figure out for themselves.

I don't know why, but i can handle pain. That's why i can get up and go go go.

I have been in pain since a child, so i lived with it, so the more i have, the more i can still keep going. Without having pain growing up, I don't know how i would be today. It's been a part of my life, so it is all I know.

I just hope that you all keep this in mind. There is more than just you when it comes to this sickness, there are your family members too. You live for all of you. You may not be able to get out and do things, but you can always try and find way to do so. You need to keep living. If you don't you will kill your whole family.

I live for us all. My husband and my daughter. I don't over due it, but i do what i can.

I usually feel ok sitting. So i know i can use a cane or walker to get to the truck and then inside a building for dinner or a movie. Then back home again. I know i can do that and go shopping in a place that has driving buggies. I am not afraid to be 35 and seen in a driving buggy.

I go go go when I can and I hope you all will too. Never strain yourself, never do too much. But remember to live.

What a very interesting thread! It IS really helpful to read others stories.

Mine has been a sort of slow motion whirlwind if that makes any sense. Pain originated almost a year and a half ago - primarily hands. And then the crazy ever lengthening morning stiffness joined. I kept on going for a long time and just found myself setting my alarm clock an hour earlier and then another and then another to accomodate for whatever was happening to me that I couldn't even begin to explain to myself or others yet.

Meanwhile, I fit in some emergicare visits after work thinking I must have injured myself (not that that made any sense) and my PCP who just poo pooed it all after giving me an RF test that was negative.

Fast forward a few months I just couldn't keep going and called in sick to work 3 days in a row when my really great boss called me up, had a heart to heart, and suggested I make use of our corp short term disability benefits and get myself all the way better. My dx followed a few weeks later and my disability just kept getting reviewed and extended month after month until it came time for the long term policy which I am now on.

The most life changing event for me was that as a result of half pay and my lessening ability to take care of myself and pets I had to pack my bags and rent out my DC condo (where I had been for 15 years) to move to a small town a few hours away near family for help. I am essentially for all practical purposes dropped completely out of my former life, sort of living on hold, with no idea of what is next.

I just keep telling myself that this first part for me is going to be my worse part and that there must be a reason this happened to me when it did (not that I have figured that out yet). And I am proud that like so many here, I really do stay positive for the most part!

Adele

Thank you Crispy.

Nancy, denial is common and I think that everyone goes through it to some extent within the first year of diagnosis. My denial lasted longer than most, and like I said in my other posts I'm paying for it. What's done is done, and I look ahead to the future with some limitations but my spirit is intact thanks to my family and friends.

There's a lot of inspiration on the forums. I'm inspired by the younger members with their youth and energy. I'm inspired by the moms - my heros. I'm inspired by the older members, like myself, who have years of experience to share.

Each of us face our challenges in ways that we think will work for us. Sometimes things don't work out, or habits have formed that are hard to break out of. We become so overwhelmed by the disease that we decide to just sit for awhile and see where it will take us. These are personal decisions and I would never question them.

AdeleRenee, DC is my hometown. Haven't lived there for years but was born and raised outside DC and lived in the city for 11 years. I'm happy that you have family around you. Hopefully, you'll get relief soon.

Lindy