Then vs now--what is your life like? | Arthritis Information

I'm in a major transitional phase right now and just trying to get my foothold. Five years ago, I was extremely active and full of life. I got pregnant in 2004 with a miracle that we never thought we could have and loved every minute of pregnancy. As soon as he was born, I experienced some mild to moderate post-partum depression that I never thought could happen to me. During that time is when my aches and pains started that I attributed to exhaustion and just plain having had a baby and things not going back where they used to be. After the PPD seemed to subside, the pains didn't but I've had a very active couple of years that had some discomfort and inconvenience but never thought much about it.

The last couple of months, however, have been a different story. I'm still nowhere near severe but definitely starting to feel it interfere with my activities. I've been in denial because I thought it was "normal" and I was just a wimp. Now I know that maybe its not the same thing as just getting older. At the same time, I'm really starting to notice that aches and pains are not getting better and some are getting worse and its a bit troublesome. I'm getting a little tired of the discomfort and starting to get concerned about what may lie ahead.

That's where I am as I'm posting. I'm curious to know where most of you started--what age and activity levels and how fast it progressed to where you are now. What is your life like now and what was the journey like to this point for you? What does this disease really look like? Is the RA population here on these boards a true reflection of the RA population in general or do those of the more severe cases tend to seek out help in this kind of forum and may be the more extreme examples?

Again, just trying to figure out what the heck is going on....

Rachel

Oh, sweetie - I never tell anybody my age! My homey Linccn is a true friend and will tell people I'm fabulously good looking...but thats about it. She's a good friend. LOL

My PRA came on in 6 month intervals over a two year time frame. When I was diagnosed in March of 06 I had moved from every 6 months to monthly for 3 months - then it just exploded. That's the only word. It was an explosion of pain. I had to stop working in June. I couldn't walk and was on a walker at night by July. In August I was reduced to using a wheelchair 3 time to make it across the country. I had no idea that I'd not be able to walk a simple airline terminal.

I started AP and my disease started 'reversing'. Yes that sounds impossible but you really can't miss that with PRA.

I do everything now I did pre-PRA including wearing high heels. I am actually in better health but still have this pesky PRA problem. LOL I'm working on exercising and eating much more healthy. I try to take care of myself and my family by taking care of me. That's hard to do with a 7 year old.

I have been thinking of going back to work as I thought my hubby was complaining about my not working. But we talked about it yesterday and he said it's better if I don't. I think it's all those errands I've picked up since I've gotten better. I do the shopping and the errands and the chauffering etc. so I think he's liking that.

I'm an awful cook tho and I blame that totally on RA. LOL

Pip

I started very young. I remember sitting on the floors at shopping malls, sitting inside the clothing racks on the cross bars, finding chairs etc. because i always hurt. I can remember as far back as about 6yrs old doing that.

In high school my knees started to get worse, there were 3 flights of stairs i would go down several times a day and it was very hard. I had asthma on top of it, so i would be late for class and get detention often lol.

When i was 21 i had my daughter and got the norplant in my arm (birth control inserts). I got horribly sick, gained over 90lbs in 22 days and threw up and had diarrhea every day for a year until i could get it taken out. When it was out, i had no pain at all for about 6 yrs which was very very odd. Growing up all my spots that hurt now hurt then just lighter, but those 6 years were truely wonderful.

Then, slowly my hips hurts, then the jaw etc. etc. went on for years and then one day i couldn't move without help which was 3yrs ago. All those spots just hit me full force.

I am 35, almost 36 and when i was little they didn't test for jr. Ra so i was told my white count was through the roof but that was good cuz it helps fight infections (so they said).

But, that is my story.

in january 1978 i got ra 2 weeks after my son was born my second child. horrible shoulder pain started immediately. my whole everything hurts now. i have been on everything and always willing to try something new with a promise. i have never been in remission. i have had times where pain and moving was not all i thought about. when i am hurting i tend to turn to the board more for understanding. i am about 48 i got ra when i was about 26 years old.Good questions. RA can affect anyone, and I think that we have a broad spectrum of individuals here to vouch for that. Before RA I was a work a holic. Doing my undergrad degree, I worked 30 hours at a job and did around 60 hours of study a week. Then I signed on for honours and was doing 70 hours of study a week, and working 2 jobs. Half way through that year I became really run down and was diagnosed with CFS (60% of people with CFS go onto develop RA within 2 years - that's me), and since then it has taken me nearly 2 years to finish the last 4 months of my course. Like you, I thought it was my fault and that I just needed to "belt up" and stop complaining, and I'd get through it, but I am learning that I cannot control my body, only how I deal with my situation. Research shows that the first 2 years of RA are the hardest to deal with, because your life changes so much - i went from being able to manage a lot in my life easily and achieve all my goals to not being able to hold a spoon to feed myself breakfast. I turn to the board to understand more about RA, the more you know about the disease, the more likely you are able to cope with and deal with what is happening to you._popupControl(); Sometimes sure i miss out on alot. The RA has stollen months of my life at a time. Over the years. I am pretty adaptable dispite my moaning and complaining. Well truth be known i would be useless without my pain meds at the moment. I got tired of staying in bed. So i a have a working amount of meds that i can function mentally on , LOL most days, and move around. I had this on and off when younger. Most all the time it seems lately. A great deal of the time the last fifteen years. It is just so much worse. I have had a great life. I worked hard today and am going on vacation tomorrow. My son thinks i am nuts. He is probably correct in his assumption.

We adapt. Find things we can do most of the time. Find a working support system. Learn it is ok to ask for help once in while. And we seek our souls to find out what is truely the important things to ourselfs. You learn to spend your good days wisely. It takes a little time to figure it all out. You will get there as will I.

Hey there-I'm not sure how my situation will hold up long term, but right now I'm one of the more reassuring cases.

Everything hit me this past October. It came out of nowhere. I'm "youngish"

Flash forward, I got on the plaquinel in December and MTX in January. Within 2 weeks of MTX addition I was practically back to normal. I exercise 6 days a week, stiffness pretty much gone, energy back.

My point in sharing this is that there are a wide range of outcomes. I know that things could change for me, but maybe not. Hit it fast, hit it hard. Stay positive.I've had Ra for just about 9 years. It was hit or miss on the meds for a long time and because of a misdiagnosis in the beginning, I had some pretty extensive damage in my ankles and knee.

Last June I started on Rituxan. I didn't really think it would make a huge diffence for me since I had RA for so long. It took me longer to respond than most (7 months) but now, I'm am doing very well. I walk 2 miles a day, ride the bike several times a week and I feel very good.

The pain issues I have now are due to the damage that occured while I was trying to find a med that worked for me...
I agree TheLa: Hit it fast, hit it hard. Stay positive!

The meds do work, it just may take some time.

Lynn

forums are not a true cross section of people with RA. You tend to get more people not working, more people with serious or hard to treat disease because those 2 groups have more time to spend on the boards and are looking for more input. You also tend to get a lot of new people who are asking questions. Most people who are doing well aren't spending a lot of time on computers talking about their disease

Not much different than before, except I have a locked toolbox of meds and I seem to visit doctor's offices more than bars. I agree with Buckeye that this forum doesn't represent a true picture of how RA affects everyone. You'll find some of the more difficult cases here, new people looking for answers and a few who just enjoy the company of fellow RA'ers. But I firmly believe that there are many more who are living with their RA very well and too busy with life to frequent this board. My sister and niece are two examples.

My journey with autoimmune disease started very slowly and only gradually started affecting my life. Except for the deafness, which may or may not be autoimmune inner ear disease, I had no serious symptoms until about five years ago (I'll be 56 years old soon). I started hurting myself more easily during exercising and eventually had to stop completely, even taking long walks, because everything hurt and I was constantly causing myself some sort of injury, no matter how careful I was. Finally, the muscle spasms started and some joint pain but it was the progressive weakness from my face to my foot on the left side that had me most concerned. A few years and many neurologist, neurosurgeon trips and MRIs later, blood work was finally ordered and the diagnosis came in, a year ago in May. MTX and Plaquenil has helped but it's still not under complete control. I'm still hopeful that the answer is just around the corner, but I'm doing pretty well overall.

[QUOTE=Jesse88]I agree with Buckeye that this forum doesn't represent a true picture of how RA affects everyone.[/QUOTE]

LOL! Buckeye actually took my post out of context. What I meant was that there are a wide variety of individuals who visit here - mothers who have kids with J/RA, teenagers with JRA, young adults, concerned husbands and wives, grandmothers and grandfathers, people of different ages and races and from countries all over the world. It was not a comment on any individual's RA.

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My RA symptoms would come and go over a span of about 10 years, and I was able to control the disease with ibuprofen and Aleve. But eventually the pain and swelling hit hard, and my blood tests showed full blown RA about 3 years ago. My RD immediately started me on methotrexate, nsaids and pred. Gradually I weaned off the prednisone, then the nsaids, and now I take 25 mg of Methotrexate and nothing else. I am mostly in remission and have few serious problems. I've got my life back again.

There is hope. I was lucky, but studies show that the newest treatments are successful for most patients who are treated early and aggressively.

Good Luck to you.

Ellie

My problems started in late elementary and early middle school. At that point dr.'s just called it an inflammatory condition. I was also a military brat so I never saw the same dr. twice. I also played a ton of sports and we attributed quite a bit to that. Finally in late high school other symptoms began to appear. My eyes were giving me a very hard time and I was running low grade fevers. I was 19 when formally diagnosed at Walter Reed. The military then allowed me to see a specialist in a civilian practice so I had a great rheumy. I was started on MTX my second visit and quickly moved on to the biologics.

I credit my rd for my ability to live pretty normally now. I am nowhere near as active as I once was. I played softball, rugby, soccer, and rode/showed horses. I think I miss the horses the most. I still go to the barn as much as possible but it is not the same. I do work full time teaching biology. I also am a single mom of a 4yr. old. I do worry about the day when it will all become to overwhelming. But, for now, things are good.

My biggest advice to anyone is to first find a dr. that they can work with and trust. That can be very hard since there is a great shortage of rheumys. But, if you can, it can make a world of difference.

Before: I was 30, working full-time with a long commute, never very physically active because of my back (DDD), but very socially active, like chairing committees at my church.

In Between: From 30 to 34, my life changed significantly. I was adjusting to life with Fibro. Too fatigued and sore to do much, I was still working full-time, with a short commute (after my divorce), no longer active with anything I didn't absolutely have to be. Shopping trips, for example, were based on necessity only, because they became physically demanding. I got a disabled parking tag, but only used it on days that were really bad.

The Change: At 35, it was a few months before my (second) wedding, when my appendix burst. Many long weeks between the hospital and home recovering, being bombarded with all sorts of antibiotics, not moving around too much. After I recovered I started noticing non-fibro symptoms like hands that stayed numb, stiff and swollen for hours after I woke up.

Now: At 37, I am out on disability and on narcotics for the pain. In addition to all my meds and such, I've been doing aquatic physical therapy but it isn't helping very much. I'm still looking for the right treatments, and am starting Orencia tomorrow. And I'm still hoping to be able to go back to work before I lose my job. It is rare for me to go out shopping because it is such an ordeal. I almost always park in a disabled parking spot now. I even purchased a used scooter for myself for things like day trips (had a wonderful one at Longwood Gardens last year that I couldn't have done without my scooter). My days consist of rest, reading, tasks I can do sitting at the computer (paying bills, for example), stretching, doctor and physical therapy appointments, some occasional errands, and spending time with my husband. And posting here.

I don't think my experience is average, and it is definitely complicated by the Fibro and DDD. In fact, I have clearance from my docs for exercise only in the water, so that definitely limits things. I certainly hope there are lots and lots of people with RA who are too busy living their lives to be able to partipate here. I'm hoping to be one, one of these days!

good post .. some interesting replies.. wonderwoman i like
your age reply .. 48 ish.. lol.. i allso second what buckeye
said about the less affected by ra are to busy doing other things..

ok here is my bit.. i know i posted my meds but not in exact order..

i worked on the building sites all my life.. 15 hrs a day 7 days a week
i was super fit.. then started getting swelling and pain in my knee
my gp run blood tests and i was diagnosed whith ra..
never heard of it.. a gp at my surgery run a rheumatology clinic..
he started me on salazorpyrin and prednisone 7.5mg ..
things started to worsen and mtx replacd salozapyrin
still on pred.. this combo kept me in work for 4yrs
with increases of mtx to the max... at this point i could no longer
pick up sledge hammer let alone swing one..friends were dressing me for work
and basically bluffing my way.. my gp said it was time to go to a rheumatology
hospital.. so i got a appt date and booked 2wks holidays.. i thought
get some new meds and go back to work.. but when i see the rheumatologist
he run xrays and bloods .. i could barely move.. he said no more work..
of any kind.. he said just going to work and going home would would flare my condition
he diagnosed severe erosive ra all my joints were ruined at this stage..
he started me on arava along whith the pred... i contacted my company
who sent me my cards and said bye bye.. i took legal advice about my
redundancy pay.. but was told because the hospital medically retired me
they did not have to pay me.. i should have sat on he sick and let the company
do it... any ways from ra onset 13yrs ago i have worst erosions are

erosions jaw
shoulders
elbows
wrists near fused and osteoarthritis in them
hips
knees
ankles
smaller joints have fared out better than larger joints ie fingers
secondarey arthritis of the spine
slight instabilityof the neck locks when i bend foreward and i gently crack it to release it.
awaiting scan on leg muscles
allso have ruptured tendon on thumb .. just hangs down
the swelling is not near as bad any more but is all in my chest back and neck
with slight inflamation in other joints..which is why i do not qualify for anti tnf
biologics..allso due to bad reactions on meds they are worried about
allergic reaction...
anyways.. i still get about .. slowly but im still standing..would love to get back to work
i attempt bits and peices and am very carefull whith my hands
self taught on the pc and know every peice of it..
used to fish a lot but only managed 2 times last year.
hope to go more this year... anyways thats me...
Boney
oh when my job went so did all my mates...
Boney,

My heart goes out to you. I don't understand that you don't qualify for Anti-TNF drugs because you have "slight" inflammation. Shouldn't you qualify based on the fact that you DO have inflammation? Considering it sounds like your quality of life is significantly impaired, I'd risk the allergic reaction too. When I had my first shot of Enbrel, I had to give it to myself at my RD's office and hang around there for a while just in case I had a reaction.

[QUOTE=kweenb]Boney,

My heart goes out to you. I don't understand that you don't qualify for Anti-TNF drugs because you have "slight" inflammation.[/QUOTE]

That's the problem today. RA doctors believe so differently in things. Mine thinks fibro is just in the head and not something real and ignores any natural approach to medicine. She also needs proof, in numbers, if it's not there, then it doesn't exist.

Some think ibuprofen will help, others want to jump to biologics, all doctors are different, we just hope we get one that is right.

hi queenb. here in the uk anti tnf- biologics are paid for by the local authority...
so a person has to score well on the d.a.s thing.. i refused to drop my pred rapidly
to make myself worse.. i scored quite low.. but back neck jaw and the inflamation in my lower legs did not count.. even though they had to give me steroid inject to stop my legs
burning and calm my back.. 2 rheumatologist have put me foreward...
on my last visit the nurse who does the das score.. told my wife they are frightend
to give it to me because of past history.. im not happy as i was in whith the doc
at the time. and should have been discussed whith me . i originally opted for humira
as it was pen inject... eventually these meds will come in tablet form and available
to all... it is a tough call whith these meds .. i would like to see goverments curb
these extortionate prices.. i mean people whith cancer but cant have meds
what is going on?
Boney
Hi all,

My life has changed dramatically since the onet of my symptoms a few months ago. Before then I was working, runnning the home, decorating, gardening, generally being 'super woman', and now I get so very tired just doing the slightest thing.

Even having sex has turned into a 'comedy sketch'!!

But i think that compared to most I have got mild symptoms.............so for now I shall continue to smile

Things haven't changed so much for me now that I'm on meds that work. Occasional flares, but other than that I am active, healthy and happy. I've only been in it for a year though.

And yes, Pip is fabulously gorgeous. :) Believe me, everyone'd be jealous if you saw her. Linncn2008-04-08 13:42:25I'm awfully early into this since it's only been since 11/07. I don't know how loud I should talk.

I've been in a pissy mood and kind of feeling sorry for myself even though I have no right - I'm doing awfully good compared to almost everyone on this board. For that I say shame on me.

After having a horrific onset which hobbled me- I made a strong comeback and for the first 2 months I was so thankful for every little thing. I had a new perspective about what was important and what wasn't. It was a very good way to be.

Now I find myself cursing my stiff, clumsy hands for dropping things and knocking things over. I'm irritated at my crickety, sore neck at night. I want a martini damn you MTX! I don't want to go to bed yet-fatigue- I still have things I HAVE to do and there are some things I still WANT to do before I say good night. I don't want to have this fear that the bad pain is going to come back again everytime I have an achey day. I hate having a pill box full of pills. I hate swallowing the big calcium pills twice a day. I hate the prednisone for robbing me of my self control with my eating and I hate the way my clothes are all snug.

OK I'm done my pity party. Sorry for being a jerk. I really do have a lot to be thankful for. I hope I didn't jinx myself.

Everyone has those days and there is nothing wrong with it. Its ok to be struggling with it. With time you kind of get use to it. But I understand. Sometimes I am happy because I got it young because I don't know what it is like to be without it. While other times I am very resentful because I haven't been able to experience some things, while some of you got it later in life and had to cope with what you can do now and what you use to be able to do. I have always hurt, always been a pharmacy, and have had to deal with it and accept it to a point. I am still looking for my cure and rejoice on good days and cry on bad days. But its my life, and I have other very wonderful things in my life.

I'm too new to even know if I'm here for the duration or whether I'll be back doing everything again soon. Having been out of full-time work for nearly a year though, my life is different. I am actually grateful that God chose to pull the rug out from under me. I've learned far more than I could have ever learned at my jobs. It's helped me to focus on what matters. It's not about what I can't do anymore or what I should be able to do now or what I would like to do if circumstances allow it in the future. It's not even about what I get done today. It's about living today.

Most people never take the time to ask themselves what they are doing or why they are doing it. Or whether they should be doing something else.

I still have the same core needs that I had when I got sick. I am still the same person and enjoy many of the same things I have for years. I just have a different perspective about how I choose to respond to life.

I live for today, don't think about the past and the future is just that, the future. Due to RA/PsA and complications I had to retire and my DH retired at the same time. We're now traveling and we do what we want. It's been a challenge to travel through out Canada, USA, Mexico, and South America but we're determined to do it. We've covered small areas of all 4 and will continue, as long as I can continue. So yes, RA gave me a whole new life and whole new set of challenges but I'm up to the challenges. Lindy
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