I would like to hear the stories of the RA'er's who have suffered from RA more than 3 years.
Tell us your story from RA onset to where you are now. Even if you do not feel you have a positive story to tell. Sometimes telling your story helps you more than it helps someone else or can do both!
I hope that your story will help all the other newbies to RA and/or this board will benefit from it.
So... com'on people! Post your " YOUR NAME HERE 's RA Story".
Do not be shy!
Heres a story, of a lovely lady...who was bringing up 3 very lovely girls....
Sorry....ADHD moment! LOL!
I started having symptoms...the stiff weak hands after my daugter was born in 1997. I sort of figured that it was RA because there is alot of RA in my family including my mom.
After my son was born in 2000, the stiffness and weakness seemed to get more intense and in 01' I went to the doctor because I was having alot of soreness and stiffness all over. My RF was negative but the doc referred me to a RD because he said that the blood test was not the only way to dx it.
That same year I met my uncles girlfriend who had RA and was on what we just knew to be "chemo drugs". I knew that no matter what I would never take anything like that, and since I am allergic to most NSAIDs I decided that I would just take Advil. No need for a rhuematologist. Plus at that time my symptoms only seemed to appear in the winter.
Let me just add that my mom, who was dx'd at age 9 with JRA is a special case. She has only taken asprine...and she has been very active her entire life. She is an amazing person...and no one would guess that she has RA even though she still has symptoms regularly. So I was baseing my expectations of my RA on my moms...which, as you can see, is pretty rare.
So, back to me.....I was just going along...and every winter I would have more problems with sore and stiff joints than the last. I remember one day in Dec. 04, I worked an extra shift at an old hospital that had these weird medicine cabinents outside of each of the pts rooms. You had to push down metal buttons and turn a key at the same time to unlock each one...I had hell trying to pass meds that day because I had no strenth in my hands at all. That was sort of the begining of the down hill decline.
Around that same time I was dealing with excessive fatigue...and shortly after that my PMD thought I must have been depressed causing the fatigue. So I started taking Lexapro. That spring I had Strep Throat...the first time after having it chronically as a child. By summer time I decided that I was not depressed and that I didnt need the Lexapro. I had an okay summer....still having runs of days when I was really tired, but still working full time and being very active. I even coached my daughters cheerleading squad and was doing cheers and some gymnastics. (yep...really)
Winter of 05 came and the fatigue snuck back in....along with a new thing...every once in a while, maybe once a week, I would be walking along and I would get this horrible pain in one of my big toes right at the joint and would almost drop me to the floor. It was like suddenly feeling like a bone snapped. I had bronchitis for the first time in about 10 years, then my son landed in the hospital for Christmas because of his asthma. While in the hospital we found out that he had bilateral inquinal hernias and so we had a surgery date set for the end of January.
Now I knew that it was a minor surgery, but with his extensive history of respiratory problems I was really nervouse about the anesthesia. I was having images of him on a ventilator again and I was really stressed about it. I had one of the top pediatric surgeons in the state doint this minor day surgerical procedure on my son in one of the best Childrens hospitals in the nation. I talked to people whose children had the surgery...but this was still my kid...I think the stress was what put what had been building for years, over the top.
With in a week after his surgery (which went better than I could have ever hoped for) I was just walking along and bang....there went the toe. I put my foot up and took some advil like I had every other time. The next day when I woke up it still hurt. I worked 12 hours on that poor toe....and that night...bang! The other toe did it. Same thing again....rest and elevate..advil. Next day...they both still hurt. Went to work for another 12 hours. By the time I got home that night my toes or to be exact the joint where the toes connect to the foot were burning and aching. I felt like there was electricity running through them. I took some Tylenol with codeine that I had for my neck and headaches. It did nothing. I called my mom at mid night....almost in a panic. I couldnt get any relief from the pain and I didnt know why I was hurting so bad. I didnt even think that this kind of pain was arthritis pain. I was thinking I had gout. I took a Vicodin that my husband had....and finally fell asleep from the strong pill....not from pain relief.
The next am I went to my PMD, had more blood work done for RA and gout...and I started calling RD offices at the recommendation of my PMD. I got lucky and found one that could see me monday (it was friday)
I got real lucky as it turns out because my RD turned out to be a great guy. He said he felt that it was RA...even though my RF and anti ccp was neg...sed rate was up and the test for gout was neg. He gave me a script for prednisone...take 5-10 mg and sent me for x-rays of hands, wrists, feet and ankles.
A few days later he called me and said there was some mild erosions on the xrays and he wanted me to go for MRI. I did that and was to see him the next week. By chance, my mom had heard about one of the local pharmacies doing free bone density testing. I went and my score was a little low. When I went to the RD, he said the MRI confirmed the xrays...and he sent me accross the hall for a bone scan. Sure enough, I had osteopenia too. It seems that all of the information, in addition to the fact that my joint pain was all over now and I was still unable to walk or stand for more than a few minutes just confirmed it for him. He put my on MTX, and ordered me to taper off of the Prednisone.
I was off of work for a month and when I went back...I never did get back to the energy level or stamina that I had before. The fatigue was worse than ever...and in april we added Plaquenil. I had bad gi effects with it and so in June I started Enbrel.
Enbrel brought back my energy and took away the morning stiffness. But it also gave me severe migraines. Off of Enbrel and onto Humira in mid July. I had flare after flare...and finally one flare that was worse than I had been since Feb.
So in Aug, we did repeat MRIs of the feet and ankles...to compare. I did have some increased erosion on one of my ankles and the decsion was made for me to start Remicade.
I had arthoscopic knee surgery in the begining of Sept to repair an old tear and 'clean out' some OA that was lurking there. I started Remicade 3 weeks after surgery and just had my 3 of 3 loading doses 2 weeks ago. I am still waiting for the drugs to kick in. The past few days have been pretty good....but the weather has been warm and a cold snap is coming. That will be one test.
I have another knee sugery to look forward too in the spring and I am supposed to have cervical spine injections sometime...not sure when. I have not been able to go back to work since sept. and I dont think I will be going back. I would like to have another baby, but I dont think I have the stamina to care for an infant...and especially a toddler. What if I was even worse after the birth? I have alot of things in my future that are up in the air...and if I havent said it enough...I will repeat it...RA is a waiting game. So I am waiting for my meds to work, waiting for the answer on my SSD, and waiting to see how things pan out so that I can move on.
That is the longest post in the world...and that is my story. There are some details that I left out...but I will just say that it has caused a huge financial burden on me and my husband. We lost our house among other things....and it has been the root of many arguements and stressful situations. It has not been easy...at all.
But I have gained a new perspective on my life and my relationship with my kids. I have learned what my real priorities are in life and so far I think I have come out on the other end of things a better person.
I just wanted to add something..I have had some doubts at times about whether or not I really had RA due to the fact that my RF was negative and the meds never worked. I even asked my RD about it and he sat down and went through my chart and gave me all the reasons why it wasnt anything else. I didnt know how much I had doubts about my diagnosis untill last month when I got my blood work back and my RF was postive. I was actually releived. I am not sure why....I have known for a long time that it was RA...but it still made me feel like I was on the right track. I guess I didnt realize how much that was bothering me...I know that it doesnt have to be positive to diagnose, but there is still a question in the back corner of the mind when there are "holes" in the "story".Crunchy, thanks for telling your story. It's really helpful to read the whole story line of someone who has been on this path a while.
Joonie, great idea.
I have had RA for almost 10 years. Mild at first maybe a flare here and there but wouldnt take any meds cause i thought the side effects from the meds would be worse than the odd stiffness and flare( think i was in denial) i just got on with life turning down offers of help when i was bad , thinking i was invincible.( wouldnt that be nice) one day about 6 years ago i had a flare an was unable to do anything, the flare didnt go away it was just the next step to the disease telling me that i was being ignorant and we all know that ignorance is bliss. I had a bad time finding a good doctor but when i did i started taking arthrotec and then avara and sulphasalizine but had terrible side effects. I was then put on to mtx but had a really bad reaction so i tried gold injections.This was even worse. I left all meds and just took pain killers but was unable to walk and even talking hurt. I went to see another rheumatologist and have been given Humira. Had a small flare after first dose and now have a chest infection so am on antibiotics so cant take the humira until they are finished. Thank god for my husband and kids who are the most wonderful people on earth.I survived on aspirin and advil until I was about 12. I had a flare and became wheelchair bound for a few months. First my dicotr tried plaquenil, but that made me dizzy. Dizzy on top of already shakey joints...not a good combo. Then we tried gold injections, but I was also allergic to those. Next we tried methotrexate, which turned out to be my miracle drug. I only took 1 pill a week, but it was a miracle for me. I could run, bike, and jump with all my other friends.
For the next 12 years or so I did pretty well. I had some flares, but normally increasing my metho dose fixed it. Then, March of 2005 hit and I had another flare. I was getting married in a month and my stress was sky high. My doctor tried PT which helped with stiffness, but not much else. I was already on prednisone and metho so he tried adding humira. I didn't have an allergic reaction for once, but I also didn't notice any difference whatsoever. My doctor finally switched me from humira to enbrel in Feb 2006. I feel fantastic. My husband and I can actually take walks together. I can kneel down to plant our gardens. It's incredible!
Of course, I can't take feeling too well for too long, so after a lot of talks my husband and I decided we want a baby. We went to talk to my doctor last week and as of this Friday (Dec 1st) I'm going off my meds. I have to be off them for six months before we can start trying for kids, so this is just the first step. Needless to say I'm very nervous, but also very excited. I've spent half my life on meds, so the thought of going off of them scares me, but I know it will be worth it in the end.
It has been about 11 years since I have been diagnosed with RA. It is hereditary in my family on my maternal side. I also have OA in my left knee due to a sports injury when I was 15. 7 knee surgeries later they are ready to replace it. The RA was contributing factor to the rapid degeneration of my knee. So that makes it so I am not a candidate for Synvisc or anything like that. I had to give up my career as a paramedic because I could no longer do the lifting required. I kept tearing up what little carrtilege I had left.
I started with stiffness and mild swelling. NSAIDS was about all they did for me. We moved to AZ where it just about all went away except for the every so often when it would rain. So they put me on Plaquenil. We moved back to the midwest where ole Arthur came back with a passion. I kept putting off going to the doc (boy did I learn my lesson) and by the time I went I had done more damage to my hands. I was promptly and right away put on humira and mtx. The meds have pretty worked well for me with the occasional weather or stress related brief flare ups. Latest xrays show no new erosion! YAY!
I have a wonderful support system with my husband and kids. I can't thank them enough for the love, care, and concern (with some nagging at times lol) that have shown me. I just recently had a horrible flare (I had to go off meds because I got very ill) and they really pulled it together to take care of me and the house. Thank you hunny and the girlies!
Sometimes having RA can really suck. But sometimes it reminds of things forgotten. Like how much your family and friends really do love you.
Oh wow..that is so weird..I have OA in my knees too from sports injuries...and when I was 15 the doc wanted to do my surgery, but I passed on it so I could keep cheering...you were a paramedic...I am a nurse..we are both married to welders that dive with the same name....RA is in the family on our moms side...are you my long lost clone or what? LOL! I wonder if this falls under that 6 degrees of seperation thing.Cloning. Hmmmm. Possible. Hubby watches enuf sci-fi lol. But would you be a clone of me since I am older? Or does it matter? How does that work anyways? LOL
I guess I would be the clone. What month is yalls birthdays?I had all kinds of inflammatory diseases before running head first into RA. The worst thing is that the summer would just make me so sick.
Then, one day I went into work and I couldn't see anything on the computer. The day before, I was just fine. In fact, I had been doing a side job for a friend. I couldn't hardly see anything for a week and kept having these strange headaches where the top part of my head felt ice cold. Well, this scared my Primary. He scheduled me for a bilateral temporal biopsy because there was a possibility that I had Temporal Artemis (which can cause permanent blindness). That came out ok, but he had me on 60 mg of prednisone which gave me the worse headaches of my life.
Then, I woke up one morning and my heart was racing like crazy. Three months earlier, my younger brother had a major heart attack. I called 911 and soon found myself in the cardiac ward. They never did tell me what is was other than angina and palpitations. But that's where I met my Rheumy. I had these big, black lesions on my skin. He came in and looked me over carefully and said, "I think I know what is wrong with you."
They released me from the hospital and 2 weeks later, on the way home from work, the chest pains started again and I stopped at the nearest ER room. Again, all the tests. That's when I found out that they were testing me for Lupus. Three more days in the cardiac ward and they sent me home.
My primary doc was of no help. The head doctor of the center sat down and told me that I just needed pain management or something like that.
Fortunately, my Rheumy was really aggressive. He started me at 25mg of MTX and at least 10 mg of prednisone. I developed Glaucoma, probably from the prednisone. But the RA affects my eyes, lungs, heart (I had pericarditis in the hospital), my joints of course, my skin. Now, they think there is some kind of nerve involvment or the possibility of MS which I am totally afraid of.
Right before this, I had a tremendous amount of energy. Now, fatigue has become a daily problem and pain is unreal.
RA caused me to lose two boyfriends (not a great loss, really), all my belongings because I went to my folks for help and they took everything I owned, and my freelance business.
What it didn't take from me is my kids or my spirit to keep trying. Still I hate it because it limits my life and changes the direction I was going in. I was a really good designer and writer. It's hard to give that up when you are at the top of your game.
But I worked as long as I could until the pain was so bad I couldn't keep it under control and I was more afraid of continuing the damage. Still I feel cheated out the life I could have because I haven't found the life I will soon have.
I know it will get better. But I still am stuck at the point of loss and haven't reached the point of gain. I guess the worst part is that they just keep finding more problems. I'm tired of seeing sad faces on doctors and knowing that they are frustrated with trying to treat me. I'd like to see a little hope from them. I'm tired of carrying it by myself.