My First Post :)
Hmmmm…where to start. Well this is my first official post. I guess I should start out by letting you know why I decided to start this blog and a little background information. First off, I decided to start this blog as I thought that sharing my day-by-day stories about living with Rheumatoid Arthritis might help others feel that they are not alone. Sometimes I just want to know that others feel or have felt the same way that I do…sometimes you need to feel the support of others and know that you are not alone.
Now a little background info on me. I was diagnosed with Juvenile Rheumatoid Arthritis when I was 2 years old. I was starting to show symptoms around 18 months of age. First, the disease just affected my knees. Then it slowly started creeping into joints all over my body. I was getting blood tests weekly, Cortisone injections regularly as well as being on a mess of medication. The medication also came with some horrible side effects. This was all through my childhood. It was hardest during middle school…you know…the time you hit puberty and everyone hits some sort of awkward stage. This is also when you try to fit in the most. Well, at that time…my arthritis was pretty bad. I could not last a full day at school. I would have to leave by lunch time almost everyday one school year. I was limping so bad and in so much pain I would have to go home and lay down. I was on Prednisone and Methotrexate during this time. The Prednisone was a steroid…and the Methotrexate was also used in chemotherapy. So the side effect of the steroid is weight gain and the Methotrexate was hair loss, weakness, fatigue…etc. So…at this already awkward and crazy stage in my life…I had to battle all this extra stuff. The worst part was the other kids not understanding. I was constantly made fun of for being “weak”, and was often told I was faking it. So I learned to keep my pain quiet…which sometimes was hard…but I would just think about others who had it way worse then I did…and that would help me get through the pain.
By the time I hit high school, I had been in remission for a year or so. And by that time I had developed RA in over 21 joints all over my body. I decided to go off my medication…that I despised taking anyway. I felt good for a while. When I reached 19 I had noticed something was wrong with my right eye. I went to the eye Dr. and sure enough…I have developed Iritis in my right eye. WHAT?!?!?! I had been in remission for over 4 years, this should not be happening to me now! So then I had to start eye drops and if they didn't work…then back on meds I go. After weeks of the drops not working…they decided to put me on oral steroids. Oh great. Well, it finally seemed to work…my eyesight was improving. In March of ’07 I decided to go off of my medication as I was getting married in June of and I wanted to start a family shortly after that…and I did not want to be on any medication when pregnant.
That’s it for now…my wrists are starting to hurt from all the typing! I will be continuing on about pregnancy, kids…etc soon. I hope to be posting daily to the blog…but sometimes it gets pretty busy around here with work and the kids…so I may not get to it everyday. And it won’t always be only about arthritis…I like to rant about a lot of stuff!!!
hiya i actually have psoriatic arthritis but sounds very similar , hope ur doing ok in this cold snap x
ReplyDeleteThanks for posting on this. I am a newbie...only was diagnosed a year ago. I'm still struggling with the aches, swelling, and the fatigue. I have always been very active and I'm having a rough time dealing with "limitations". I horseback ride and have my own horse, so I am finding some tasks difficult (like grooming). I will be interested to read more of your story. Thank you for sharing!
ReplyDeleteThank you for sharing your story. I think blogging helps me cope. I know reading others stories makes me feel like I belong somewhere. Here's to many more blog postings and cooperating fingers and wrists.
ReplyDeleteI am very excited to follow your blog. It is nice to hear other peoples' similarities. However, I have Stills Disease- closely related to RA but some differences. Treatment is about the same. Good luck with the blog :)
ReplyDeleteThanks twinklenic:) Hope you are feeling well:)
ReplyDeleteJocelyn - It is very hard in the beginning with getting used to the limitations. There are so many things you want to do...but just can't...either because of the pain...or you may just be too tired to even try. Keep in touch and if you have any questions feel free to ask. I want to get awareness out there on just how debilitating this disease can be.
Melanie - yes...reading others peoples stories does make you feel like you are not alone.
I am interested to hear more about your stories and the stories of others. I have been diagnosed with RA for 5 years now. In March 2009, I stopped taking my medications so that I could get pregnant with my first child who was born in June 2010. I take prednisone now so that I can breastfeed. I am also trying for my second baby. Wish us luck as my symptoms are getting progressively worse day after day. I may need to get back on the metho/Humira combo.
ReplyDeleteThanks Ashley. Stills Disease - that is related to RA right? How are you doing with it? Are you on any meds?
ReplyDeleteCongrats on the baby!!! I stopped my meds as said in my post before I wanted to get pregnant too. I really hope everything works out for you!!!
ReplyDeleteThanks for sharing your story, I am 45 years old, mother of 6, I was diagnose 4 years ago, shorty after having meningitis, it seem to be the trigger for the RA, that was in May 07, by October 07 I could barely walk, dress, struggled with everyday activities like brushing my teeth, cutting my food,, I went on the meds, by December my RA was doing better but the side effects where horrible, tried a series of natural meds, didn't work, so today I am med free, however this has come at a cost, the pain I have everyday difficult to deal with, there isn't a single task I do that doesn't involve pain, however I can't bring myself to go back on the meds because the side effects left me virtually bed ridden , back to see the specialist in Feb to see what else they can do, I hate this disease, it has taken a huge part of my life , so many things I took for granted in being able to do, simply planting a flower garden leaves me with days and days of intense pain, I am currently working on getting a real estate license so I can continue to work. It allows for me to schedule my own hours and no early morning appointments or time clocks, as you know mornings are horrible. I just wish more people would understand this disease and no assume we are "faking" it,, they can't see the pain,, I get that, but for just one hour they could experience the pain they would never suggest we are faking it. I have had the emotional down slide with this disease as well, watching your body deform in front of your eyes, having to ask your six year old to open a package for you, or help you tie your shoes, its not just physical pain, it effects every thing about you, what you once were and what you are becoming now,, I hate this disease
ReplyDeleteHi im chris im 28 and i have had rhomatoid osteoarthritis osteoporosis since i was 2 which im sure you guys and girls will understand sucks im getting worse by the day with all my joints in this cold weather but i just keep on smiling good to see im not alone :) take care
ReplyDeleteHi,
ReplyDeleteThank you for starting this blog, I agree that there should be a place where we can share our stories. I have RA, I was diagnosed 10 years ago. I started on enbrel which caused my white blood cells to increase, then I was put on humira for years and now I am on orencia. The drug helps a great deal, I am able to have a quality of life.
How does everyone cope with the fatique?
Suzanne
Hello. I was diagnosed with RA at 27! I am now 35. I have good years and bad years. This past year has been yucky... got a cortizone shot in September for a flare up and that shot gave me this huge infection that i had surgery for last week! UGH! Anyway, most of the time, i do ok. I am very tired but chock it up to having two little girls and being a single mama. Although I know RA has a lot to do with it too. I was excited to see your email this AM. I think its important to have a support network. We understand each other!!!
ReplyDeleteoh, I am on methotraxate and I also take humira shots.
ReplyDeleteHi! I have Anklyosing Spondylitis which was diagnosed in February after suffering for 19 years (since age 35) with all types of back and neck pain and swelling of my finger joints. My mother had RA from when I was about 6 years old (she was about 35 also) and she died when she was 66 of colon cancer that had spread to her liver. She at times was bed ridden and/or wheelchair bound and the thing that worked for her back then was gold injections. I'm sure she would have been in a lot better shape today! When my fingers started swelling 2 years ago I was certain I had inherited her RA but tests were negative. Finally my rheumatologist pinned it down to AS, which is related to RA. Some days it is a chore just to get out of bed (like today). I take Mobic and Sulfasalazine which has been increased to 750 a.m. and 500 p.m. I don't see much of a difference so when I go back to see her in a couple of months I'm afraid I will be "graduating" to one of the injectibles. I'm not too keen on that idea so will be reading here to see what it's like! Thanks for keeping everyone updated with your life. Jill
ReplyDeleteThanks for sharing your story, Lindsay. I was MUCH older when I was dx'd with RA in 1997 at the age of 39. I have been off meds (methotrexate and enbrel) nearly 2 years. never was on prednisone because I also have t2 diabetes (dx'd earlier the same year). I took nsaids (relefen, celebrex or aleve) instead.
ReplyDeleteI've read that gluten free diets are helpful with autoimmune issues like RA. has anyone else heard this? I removed bread, pasta and other grains from my diet because of diabetes, and after 10 plus years, I wonder if that's the reason I went into remission?
My doctor said I might have to return to meds after 3 years, but hoping to prove him wrong.
Hi everyone,
ReplyDeleteI'm excited that you are starting this as well. I was only diagnosed 2 years ago (I was 26) and am currently taking just Enbrel (methotrexate freaks me out, even though my doc thinks I should be on it I just can't do it anymore). I am amazed to hear that you've been off meds completely with a case that sounds so much more severe than mine. Are you living with a lot of pain or are you doing okay?
Methotrexate freaks me out too!!! I live with quite a bit of pain...but I hate taking meds. Every medication I have been on - helps with the pain...but for me...it has not done anything else...my swelling and stiffness always seems to be there...so, I tend to just live with the pain. Am I the only crazy one to do this...lol :)
ReplyDeleteThanks for beginning to blog, it was great to read your first, I too am a RA sufferer, diagnosed 3 years ago, but my RA doc was treating me for RA for 4 years prior to, because it was not showing up in my bloodwork, but then it did in a big way. I am a mother of 3, used to participating in all my kids activities, my kids 20, 15, 11, were used to me going all day, it hit them hard when mom could not do hardly anything, but they all are a big help to me now, I have Remicade infusions every 4 weeks and take 12 mg methotrexate weekly, this year I got pneumonia, and it took 3 and 1/2 months to recover from, so everyone be very careful who you are around during sick season. Thank you for taking a active part to helping others cope with RA, and bless every RA sufferer who reads your blog.
ReplyDeleteLindsay,
ReplyDeleteThank you for sharing your story. I was diagnosed five years ago with Juvenile RA. It's nice to know that I'm not alone. I have also fought with being on and off medications and then regretting it! Remissions are great and allow me to enjoy myself, but they also make me question the real treatment power of RA drugs. I often wonder if remission woudln't just happen on their own accord, with no medical interventions. Flare ups lead me to believe that medications for this and other similar diseases really do nothing but attempt to give us some quality of life. I'm only in my 20s and not being able to get of bed or sit for 10 minutes is problematic, but now I understand that there are people who know how I feel and can sympathize well!
I will be sure to check in on your blog. I am a 29 year old mom of a 15 month old daughter. I had never had any symptoms until a month after she was born. At first I thought it was my body "repairing" itself but went to the doc when it got so bad that I couldn't even chew because literally every joint in my body was swollen and horribly painful. Diagnosed with RA...it's so frustrating...to have days when it is so painful and difficult to even pick up your child. Although, it sucks to know that others have to deal with pain on a often daily basis, it does provide a bit of comfort to know that it IS something that we can get through. Thanks for starting this. Look forward to hearing more of your story.
ReplyDeleteGreat job putting up this blog Lindsay. I was diagnosed 5 years ago after two years of constant pain. I only have flares when I am stressed out. I'm on metho/leucovorin/plaq. I also take prednizone for flares. I am working on improving my lifestyle right now (exercise, diet, stress management) and I plan to try going off the meds as soon as I feel like I can handle stress so the RA won't flare.
ReplyDeleteI have had 6 surgeries on my hands and I started playing guitar to rehabilitate and have about 90% mobility back.
Maria...I agree and have been reading a lot about diet lately in lieu of meds. Apparently certain foods can make RA flare, but my doc never talks about diet.
I'm glad you are starting this blog! I've had RA for 6 years now. I was diagnosed my freshman year of high school. It is always such a comfort to hear about other people out there that are going through similar things...as most people I know do not understand what I have. I can't wait to read more posts! :)
ReplyDeleteI'm really glad to have the chance to read this blog. I was diagnosed about 2 years ago, but I'm currently in law school. I thought the first year of having RA was the hardest, but living with RA and trying to survive law school is quite the struggle. It's nice to know that others understand how it is without having to necessary explain things. I look forward to your next post!
ReplyDeleteI really enjoyed reading this. I was diagnosed with JRA at age 3. It is a comfort to hear about people with similar symptoms. I also look forwrd to your next post!
ReplyDeleteHi Lindsey,
ReplyDeleteIt was difficult reading your story, my daughter is 23 and was diagnosed at 18 months due to a fall. This is when we found out she has JRA. She went through the same things with school, in middle school she had to have her first jaw replacement (tmj) as well as her fair share of knee and ankle surgeries. My daughter developed Iritis when she was 3 years old and has had several bouts with it since. Last year she had her whole jaw replaced with a titanium jaw and screws and bolts in her left foot before she planned her pregnancy.
She is now 23 and has just become a first time mother!!!
She was off her meds for 6 months before the pregnancy and during the pregnancy she was on 1 med, plaqequanell. After giving birth she was immediately given 600 milligrams of steroids through IV. My daughter went through a couple of remissions since giving birth but wants to do it all over again. She said she felt the best she's ever felt during pregnancy.
My daughter is going to school on line, has her own photography business and a mom to a 6 month old. Some days are difficult for her, but, she is doing such a great job.
I look forward to reading your blog and truly wish you the best. This is a disease that has a mind of it's own and noting can stop it!
Family, friends and a good relationship with your doctors plus a good attitude is what get's you through the tough times.
Your in my prayers Lindsey...
Lindsay, I live in Hastings, NE and was diagnosed in October 2005. Been on so many drugs with little results. I have it the worse in my wrists, knees and fingers. At one point in my life I couldn't even pick up a pen and sign a check. Then, on June 1st, 2010, I got an infection in my elbow. It was MRSA and it got clear to the bone, muscles and in my bloodstream. All those RA drugs had wiped out my immune system. I had to have surgery to clean out my arm (almost had to have it amputated), then antibiotic infusions EVERYDAY for 8 weeks. I had to go off all the RA drugs except the Prednisone and Sulfasalazine. I feel better today than I have felt in many years. My cartilage is gone in my knees, so of course my knees hurt constantly. But I'm able to use my hands and am doing things I thought I'd never be able to do again. I don't know why I feel better now that I'm only taking the two drugs, but I do. I know how painful and debilitating this disease is. I have family members who think I'm faking this and doing it just for attention. I wouldn't wish this upon my worst enemy. I am open to suggestions, I will share my story, I will listen to anyone who needs a shoulder to cry on. This disease is terrible. I wish you the best and hope remission is forever.
ReplyDeleteI'm glad you started this blog and that I recieved the notification about it via my facebook profile this evening! It really does help to have a network of other people who can understand what you're going through - especially during a flare up. We can all learn so much from each other, too. Thank you for starting this page!!!
ReplyDeleteI'm 24 years old - diagnosed so recently that I haven't even begun RA-specific medications yet and am seeing my Rheumy on the 16th of this month. I'm very nervous but really hopeful that they can help me get back to some kind of normalcy again. I look forward to reading more, posting more, and getting to know more about everyone else!
What a great idea! Im 36 and was diagnosed 5 years ago. I've been a high school teacher for 15 years, married 18 years and a mom of a 10 year old. Since the diagnosis, I've had many infections and 4 surgeries as a result of those infections, including a hysterectomy. I've taken methotrexate, Arava,Imuran, Humeria, Embrel, Remicade, Rituxan and am currently on Actmera. I have failed all biologics and I tend to fail them quickly. I am at my limit this year and I am in the process of filing for disability. I cannot continue to teach all day and sleep all afternoon, spending no time with my family. The only medicine that worked at all for me was Rituxan, but I cannot continue to take that because my Immunoglobulins are too low. I'm very frustrated, but I'm hoping that staying home from work will help me feel better.
ReplyDeleteHi Lindsay.
ReplyDeleteCongratulations on your first blog!
I have RA. I went through a long, frustrating process before getting a diagnosis. I'm on Naproxen, Arava and Remicade now and I am so thankful for these meds. Before them, I was in so much pain and over-whelming fatique that life was horrible.
I think I had JRA but it went undiagnosed. I never crawled on my hands and knees like other babies. Not one questioned that. My knees always hurt. I always had "sprained" ankles and wrists, had days when any activity was hard to even try, and had problems reaching over my shoulders and could not write more than a few words because my hands couldn't hold the pen. I lived on aspirins and eventually got to where I never complained to anyone and just got them myself. I thought everyone felt like I did. Taking aspirin turned out to be the right thing to do.
Keep on with your blog. People don't realize what this disease does to a person and you can let them know of our struggles. You go girl!
hi there..5 years ago i got few symptoms for RA that my doc gave me 2yrs supply of antibiotic and painkiller..so far,i'm doing fine,no RA n read ur blog remind me to do my medical check up..thanks dear..
ReplyDeleteHi!
ReplyDeletewell first of all it is comforting but at the same time upsetting that we all suffer from this disease..i agree it is great to write your story and share with us..sometimes i need to know there are others who can relate to the daily struggles of just getting out of bed and dressed. I was diagnosed 4 years ago and unfortunately it hit me hard..i have lost mobility and need surgery in several joints including my elbow and still waiting for a remission that may never come. i stopped takin meds 2 years ago and i do a lot of natural stuff to keep my immune system up..i feel much better not mobility wise but definitely stomach wise:)thank you for sharing your story..it means a lot!!!!!:) continue to fight it, never give up!!!:)♥
Good for you for taking the time to start a blog. I'm sure many people will find this interesting. Thank you.
ReplyDeleteI am 44 years old and was diagnosed 2 years ago. The onset was quite sudden and the symptoms worsened quickly. I am currently on Metho/Humira.
One thing I found interesting here by reading your blog as well as comments is the common complaint of fatigue. I thought it was just me and unrelated to the RA. My rheumatolgist wanted me to undergo sleep studies for possible sleep apnea. I never found time to schedule the appointment. The fatigue comes and goes but it's nice to hear that this is common and not just me.
Hi Everyone, My name is Lauren and I also suffer from rheumatoid Arthritis. I have had it now for nearly 2 years or there abouts. I am 30 years of age. With me, RA started in my hands/wrists and that is where it has stayed fortunately :) My hands swell and can at times be very sore. I did do aged care since 2001 with a lot of heavy lifting which of course probably contributed to the cause. I have also previously been heavily in hockey and Zen Do Kai freestyle martial arts in my youth and wonder if somehow these have helped cause RA?
ReplyDeleteI complained to my local GP, had xrays which come up negative and then had that electric shock thing (cant remember the name) that tests for carpul tunnel which it was so had surgery on my left hand and later on a synovectomy on my right hand as the palm of my hand would crunch which sounded and felt discusting!
I am/was on 20 mg of methotraxate per week and leucovorin (calcium/folate) and then plaquenil 1 tab twice daily (malaria med). The combination has been quite successful, but the weather predicts when my hands are sore and when not mostly. They are much better in the summer months which I am thankful for.
I have now been off the meds for 3 months in order to start a family, as you have to be off methotrexate to have babies...so an exciting time in my life!! I have been pretty lucky coming off the meds as the RA hasn't been too bad at all and I NEVER take painkillers :) and never did when I was on the meds. Only very occasionally. I have never had to have steriods which is great too!
I would like to know how much methotrexate people are on? and if you suffer any real visible side effects? or if any of you are on plaquenil? and if it is effective etc
Hi Lindsay,
ReplyDeleteThanks for sharing your story. I was diagnosed with RA a year and a half ago at age 24. I had it at least a year prior to that but was clueless to what was causing me pain. It's really a battle today to get properly diagnosed. Did you know, average western medicine doctors have NO clue about RA? I suggested once to a doctor that I might have RA and she said there was no way possible. She said I was way too young and only old people got it. Hello! That's OA! And look at you! You were only 2! Shows how much they know! But bc of that I suffered even longer not knowing what was causing me such pain. When I was finally referred to a rheumatologist I was diagnosed off the bat. It was actually a relief that I had an answer to my problem. I was put on prednisone, methotrexate, plaquenil and the enbrel shots. I was on the point of using a wheel chair. I couldn't even wipe myself in the bathroom it was so sad.
So anywho, I wanted to ask if you have seeked out alternative therapy? I have seen 3 naturopaths and have completely changed my diet! I feel sooooo much better now and am off all the drugs except enbrel (which I will be getting off shortly). I discovered that I am gluten intolerant (I have celiac disease) and I'm very allergic to dairy. I was seriously eating bread and dairy EVERY day of my life! And the doctor said I was gluten intolerant since I was a small kid. So can you imagine how much damage and inflammation that does to your body? As soon as I quit (cold turkey) I started feeling better within days! I'm a strong believer that EVERYBODY with an autoimmune disease should go gluten free! Truely GF that is, without all the processed corn substitutes that are equally as bad. But honestly, I had no idea I was allergic or intolerant to these foods bc I had no normal, average symptoms. I went gluten free in May and I cheated ONE time with a cheddar biscuit from Red Lobster and I felt sick for 5 days and my inflammation was back in my hands and I couldn't bend them.
So I really hope you take what I said to heart. I hate to see others suffer when I know there are safer alternatives out there that work bc they did for me! :)))
Michelle
Hi Lindsay
ReplyDeleteThanks for starting something like this. I never seem to have the time to try and setup/maintain a blog!!
I have RA and I was diagnosed when I was 16 and doing my last 2 yrs at High School. I have been in remission once (very short) but hopefully I am going into another remission now! I am now 34 and would love to NOT take so many drugs!
Along with the RA, I now have OA in my feet, as well as Fibromyalgia. I don't know (neither do the Dr's) if my erratic heart rate, high blood pressure and daily migraines are associated or I just got lucky. I have had these for 4 yrs now.
Thanks again for sharing your story and to the others 'Thanks' for your stories as well.
Hi I'm Damara. Loved your blog. Was diagnosed April of 07'. I also have severe back issues. Haven't worked since Jan 09'. Just got my disability last month yay. I hurt somewhere daily. I stay in prayer and continue to live my life. May Gob continue to bless and keep us all. Wish u all the best.
ReplyDeleteHey Lindsay,
ReplyDeleteThanks for creating this blog! I was diagnosed with RA four years ago in my freshman year of high school. I've been getting steroidal joint injections and have been on naproxen ever since. The last time I went to the doctor they wanted to put me on methotrexate, but my mom said no. I will be going to the doctor at the end of this month, to see what plan they have in store for me. Wish me luck! Thanks for sharing your story with others!
Royisa
Hi Lindsay, I have had RA since I was six years of age, I am now 50!..Had 2 hips, a knee, and an elbow all replaced, I am taking prednizone, methotrexate, and every 5 weeks I go for what I call "the drip"..(remicade)..lol..One thing I say is never let it get you down, if I want to do something I WILL find away to do it..anyway GOOD LUCK wiht the blog and stay well..God Bless..Debbie
ReplyDeleteHI
ReplyDeleteI am excited to read your blog. I have psoriatic rheumatoid arthritis. I have had RA symptoms since I had nodules removed at 18 months. Anyway I never got diagnosed until I was 27. I'm not on any meds right now just dealing with the pain which some days can be hard. I know what I can do and what will put me flat in bed so I just try to stay in between :)
Hugs
Ami
Thank you so much for your testimony. It is so good to hear from another mom who struggles with RA. I sometimes lurk on the Arthritis today site but I find that most of the people are not in the childrearing stage. It is so different when Mommy has to feel well enough to get two kids off to school everyday. I lookforward to more posts!
ReplyDeleteShaideh
Thanks for sharing your story, Lindsey, and for everyone else that has posted. I was diagnosed almost 11 years ago with RA. I was allergic to methotrexate. Immuran made me violently ill. Remicade was the first biologic I tried, but it ended in drug-induced Lupus. Enbrel didn't help. Humira & Kineret again brought on the drug-induced Lupus. I'm currently on steroids, arava, plaquenil and pain meds. I now want to wait a few years before trying the newer biologics...just don't want the Lupus AGAIN!!!
ReplyDeleteIn addition to the aches & exhaustion, I currently have the most inflammation in my wrists & ankles, left knee and stiffness in my shoulders. Last March I was finding it so difficult to walk because my feet were pronating so badly -- each day it was getting worse, so I tried to stay off my feet and barely walk at all. The inflammation looked like Michelin tires around my ankles. Went to see a specialist and she explained that the tendon that supports my ankles is not working. No support. She said she was afraid I might not be able to walk in the future! I kept saying, "From RA???" And she said that RA is a connective tissue disease. So now I am sporting orthotic boots that go mid-calf (to support my ankles) and the entire boot has to fit into my shoes. I pretty much now wear men's shoes in order to accommodate the huge boot. Not attractive but it has helped me be a bit more mobile.
Happy Holidays to everyone, and most of all STAY WARM!
Hi Lindsay, I'm Jill, I'm 22 and have had RA for almost 3 years. I was on prednisone for a while and methotrexate (world's most evil drug...) for 1 1/2 years. I switched to sulfasalazine about half a year ago and it's sooooo much better! Oh also I had foot surgery this summer to remove a rheumatoid nodule from the bottom of my foot, it was bizzare.
ReplyDeleteAnyway, I'm interested in hearing about how you dealth with pregnancy, because maybe in 10 years or something I'd like to have kids but I'm scared to go off meds. Thanks for sharing your experiences! Also I understand where you're coming from with people not understanding arthritis. My one friend once said "Hey Jill wanna hear a joke? ...Arthritis!" Haha, get it...
I have been living with RA for over ten years. Some of those years have been difficult and some much easier. I take four differnt meds to keep my RA under control. Due to my immunity lowered I am prone to sinus infections and have trouble healing after surgery. But for the most part, have a good life. I work part time as I don't have the energy for full time work. Thanks for writing the blog. Hopefully we can all encourage each other.
ReplyDeleteUpon reading these comments I have had tears in my eyes. I feel such a kinship with you all as we struggle with this painful disease and try to squeeze the most out of life. I am proud of anyone who has an immune disease who can become a parent, hold down a job, complete higher education, try and educate others about their disease, even be victimised because of it and still smile through it all.
ReplyDeleteI was diagnosed 6 years ago at the age of 25 with Rheumatoid Arthritis. This year I got a new diagnosis of Psoriatic Arthritis and Psoriatic Spondylitis. Same treatment as Rheumatoid, though. Unfortunately I have the arthritis in almost every joint in my body - the spine can hurt the worst.
There have been many difficulties along the way - wheelchairs and surgery, weight gain and depression....the hardest thing to cope with is not really knowing what I should do to get better. The Rheumatologist wants to pump me full of medication (currently on plaquenil, salazopyrine, prednisone and Naproxen) and I have gone to Naturopaths and they take me off my meds and put me on a new diet and very expensive supplements (hence ending up in a wheelchair).
I am afraid to go off my meds now - but would really like to, as I worry about the effects these medications have on my body if I take them long term. It is so frustrating to not know where to turn for help, what to do next - the pay off in trying something new is that it may just work - but the downside to it is that it may cause alot more pain and suffering.
Bless you all and thank you so much for sharing your stories. You may just have given me that extra bit of courage I needed to keep looking for that magic remedy....
Hey,
ReplyDeleteI have had RA for almost 11 years now and I take enbrel. This drug works so well for me that I often forget I suffer from this disease. I used to take methotrexate and steroids. They helped but they gave me nothing like the relief I get from Enbrel. The longer I have taken it, the less I seem to need it. I only hope it lasts! I worry about the long term affects but I have a great quality of life at this point. I am interested to hear more testimonies about going gluten free. My doc never talks about diet. Any other success stories? Does anyone else suffer from Raynaud's? My doctor said this was related to autoimmune disorders.
Hi Lindsey,
ReplyDeleteWhile reading your blog I thought someone was writing about me. We went through almos the same situation. I was diagnosed with JRA at 18months old and it too started in my knees, and up to my hips. I started getting deformaties at 5yrs old and couldn't walk right, the docs put me on leg braces that went all the way up to my hips, they didn't work very well. This all was in my country Colombia. When I came to the states I was getting worse. I had to start using a wheelchair bc my hips would come out of place while walking. I had hip sugery at 9yrs old, it took some of the pain but not all. Had both knees replaced, ankle,toes, wrist & finger fusion, shoulder & elbo repacement. I was on pregnisone, methotrexaid and some others I can't remember. I hated what it was doing to me, I gained so much weight I hated it and seeing my hair fall was awful especialy when I was in school. The meds made me ill to my stomach and colon, I was always in the hospital with something. During my middle and high school I got worse, my hands got deformed, and got very weak, I could no longer do anything for myself. I told the doc that I don't want to take anymore meds to plz give me something else, but they kept saying there's nothing. I went to college and met a guy, and fell in love. I later got pregnant and was very surprised since the docs told me I could never get pregnant bc of the medications. while I was pregnant I had a really bad hip and could not even stand, but it took my other joint pains away, it was amazing not to finally feel pain. Afterwards was the hard part. One day this lady comes up to me and asks me if I have heard of Enbrel, of course I didn't since the docs wouldn't tell me. so I went to the docs and told them thats what I wanted and I have been on it for 10yrs, no mayor side affect thank God. Now at 36 the docs tell me no Ra showing in my blood. But I still have to suffer pains from the damage the JRA has caused.
Thank u for doing this..
Thanks for taking your time to write this blog. I am very excited about it. I have a 17 year old daughter that has Juvenile Rheumatoid Arthritis, fibromyalgia and crohn's. She was diagnosed with the JRA in 2006, but we know she had it for many years prior to that. She has never been in remission. She is currently taking methotrexate, plaquenil, prednisone, remicade, lyrica, mobic, and tramadol. She is allergic to Enbrel and Humira. Arava and Kineret did nothing for her. This is her second time trying Remicade and it seems to be doing nothing for her either. We are looking to try Orencia next. I myself have mixed connective tissue disease. It's a mixture of more than one connective tissue disease. I have RA, Lupus, and fibromyalgia. I was diagnosed in 2004, but know now that I had it for many many years prior to that. I no longer work due to the pain, swelling, and fatigue. My daughter is now home schooled. She has always had a hard time with her peers saying she was faking and just not understanding her being tired. It's not fair and I hate it. We both struggle with depression. It's nice to read other's stories and know we are not alone.
ReplyDeleteReegan, I have suffer from raynaud's. It seems to be getting worse and worse. It is getting cold here in Texas and it has been flaring bad. Do you take meds for your raynaud's??
ReplyDeleteHi Lindsay,
ReplyDeleteWow, as I sat here reading your post, with my 5 month old baby girl on my lap, i cant believe how similar your story is with mine.
My name is Jeff, and im also 27. I was diagnosed with JRA when i was 4, and it hit me really hard. I spent most of my childhood hobbling around, tring to keep up with my brothers and friends. Taking every med under the sun( predinsone, methotrexate, gold, remicade, vioxx ect) in the hopes to slowing down or managing the disease. Its safe to say that all it really did was hurt my stomach, and make me short and chubby!haha
I also got iritis, in my left eye at 6 years old and have been blind in that eye since, But my driving is great! I had my left hip replaced in 2002, my right knee in 2005 and just had corrective jaw surgery about 18 months ago.
Im happy to say that since my hip replacement, iv been a new person. its amazing what you can do, when you can move around and walk. Im lucky that im only on one med now, Enbrel, and its been working great for me the last 8 years.
I kept my rehab up and kept working away with my exercises, and with the enbrel working really well, iv never been so strong and active.
Finding that balance is extremley difficult to find!
I never thought id be able to have a child, cause of the prednizone and other drugs, buts shes very healthy and happy. i hope she can do all the things that i couldnt do as a child and teen.
I wish Lindsay and everyone here the very best!
Take care,
Jeff G. from the okanagan, B.C.
I was diagnosed about 8 years ago. It took Kaiser a year to decided what my problem was. I had massive swelling in my hands, my wrists, elbows and shoulders were so painful, I literally could not dress myself and eating was excruciating. For a year the doctors would only prescribe NSAIDS for me, which by themselves, were hardly worth the effort to take them.
ReplyDeleteOnce diagnosed, I was put on Sulfasalizine and Plaquenil. It helped some, but not enough, so Methotrexate was added to the mix and that seemed to make the difference. Then 2 years ago, my husband was out of work and we lost our insurance, so there went my medication. For a while, I was surprised that I seemed fine, but after about 5 months of no medication, the pain returned with a vengence and in more joints to the point that I could hardly walk for the pain in my knees, ankles and TOES! We finally got insurance again and my new Rheumatolgist just has me on methotrexate, though he is saying he might like to add Remicade.
Jocelyn-I have 3 horses and when having a flare I know it can be very difficult to take care of them. The worst for me is picking up their feet to pick each hoof clean. I can't even consider tacking up. Attempting to tighten a cinch, just is not going to happen. I do love brushing them, though and even though there is some pain involved, I think it helps maintain mobility to brush them slowly. I have also taken up Pilates which has helped regain some mobility in my knees that I lost. Since I have a 20+ year old horse that has arthritis, I know how important it is to keep him moving and I think the same applies to me.
I was diagnosed 15 years ago when I was 10, I have RA in all my joints (i never do things by halfs), i've been on pretty much all the pills and injections in that time and unfortunately nothing has ever worked consistently for long, but you got to keep smiling through the pain and side effects.
ReplyDeleteI'm never normally a negative person but recently i'm getting really sick of the dirty looks Ive been getting from people when I sit in the 'reserved for people who have disabilities, pregnant or less able to stand' seats on tubes, trains and buses. Just because i'm young and not pregnant people think that I shouldn't be there and makes me so angry, I don't want sympathy and i don't want to tell my tale to every stranger i meet so I get public approval to sit down but just because i look like a healthy 25 year old doesn't mean i am on the inside. How have others dealt with this? sometimes I will just exit the seat as I cant take the looks or the comments, and pregnant women are the worst for the evil stares i just want to say sometime
'I DIDN'T CHOOSE TO HAVE RA BUT YOU DID CHOOSE TO GET PREGNANT, ALSO YOU HAVE IT FOR 9 MONTHS TO DEAL WITH I HAD RA 15 YEARS AND COUNTING'
Sorry for the rant, i'm just in a lot of pain at the moment and just about to go to work so i'm about to get a lot of these looks and comments and i just really don't want to deal with it today.
Hannahx
Jeff G.
ReplyDeleteHannah, i get the "evel look" all the time when i park in the disability parking spot, and most of the time its from the older generation.
I have no problem whatsoever if people come up to me and ask if i should be parking there. because that tells me, that my disability now is not 100% visable and i look like a 'normal' able body person, and that makes me smile! I looked disabled as a child and teen.
BUT i do have a problem with getting the evil eye and no one asking me if i should be parking there.
There arent to many ppl like us, young ppl with this type of sickness. so try not to get to down(and i know it can be at time more difficult then the arthritis) and i always say this to ppl, and try it out, it works,
"Arthritis knows no age"
Jeff G.
Hi Lindsay,
ReplyDeleteThanks for starting your blot and sharing your story. I am 46 years old and I was diagnosed with Rheumatoid Arthritis and Fibromyalgia 14 years ago, after being mis-diagnosed for over 15 years. It took getting down to 95 pounds, inflamed and curled up and in a wheelchair before they decided it must be something. It was diagnosed as Stress, way too many time, and many other things.
It was very hard for me when the doctors told me that I had to quit work, I loved my career. I then move back home to be near my mother. Eight years ago I told her she could put me in a nursing home, she was having to help me dress and do other things and she was in her 80's. At that time I started to go to a pain clinic and also told my RA doctor we had to try something else. He then put me on Humira and it did help. Been on Methotrexate and numerous other meds since I was diagnosed.
As far as fatique, I only do one major thing a day. When I have to clean house, I clean one room a day. I try to pace myself and I take a nap in the afternoon to get ready for round two, the rest of the day. I was always a to do list person and always got everything done. I am still a to do list person but the list never gets done, but that is ok, there is always tomorrow.
Hannah, I understand your frustration with the disability parking. We have something that is not so visible to other people. Keep your seat, do not give it up. Take your disability spot when you need to. I get SO ANGRY when I see people parked in the disability spots just because it is convenient for them to get in some place fast. At times I get out my cell phone, look at the sign and pretend I am making a call.
Anyway, one day at a time......do the best we can and me thankful for other things we do have in our life (not so easy, but I try).
Deb
I totally understand the 'looks' they you get. Because we don't look disabled...people are too quick to judge. I will be going in to this a bit more in a post later on. It is nice to read everyones posts...seems like we all go through the same stuggles.
ReplyDeleteThanks for posting! My 10 yr old was diagonsed last year and she too gets picked on and told she is "faking it".... awareness is the key ( and a good slap upside the head! ) My sister has a blog as well - check JIA out from a family members perspective:
ReplyDeletehttp://kristinschreck.wordpress.com/2010/11/30/day-303/
Hi Lindsay!! I completley understand what youre going through. Our stories are very similar, I was diagnosed with JRA at the age of 6. I was playing T-ball and I kept limping and dealing with a lot of pain. It was found it my left knee and within months it spread to every joint in my body including my jaw. Elementry and middle school was very rough. I wasnt able to participate in gym class or even sit on the floor. I had to have special locks on my lockers and use a wheel chair for one class. All the kids hated that I got all this special treatment so I learn to just keep it to myself. I felt like I was embarrassed to have this, I didnrt want anyone know at all. I was on all the same drugs, I hated methotraxate. I had to take it orally and eventually I had to do the injections. I have lost a lot of range of motion over the years, my hand will not open anymore and my wrist our fused. Im currently 24 (almost 25 haha) and back in March I had to have a total knee replacement. That was long road but everything is slow feeling better in that area. I have to get the next knee down in march 2011. I keep telling everyone I will be the next bionic women. I also wanted say that about 4 years ago I started to accept my diesease. I hated having this, like I said earlier I didnt want anyone knowing and I was embarrased. But I think after highschool I learned not to care anymore and this is me and if you dont like it I cant do anything about. Im trying to postive because thats the only I can do. I have wonderful family that supports and understands me, I also have an amazing boyrfriend who has accepted me for me. It is very hard to find a love one that can accept your disease and your limitations!! If anyone needs to chat Im here. I would love to meet new people that deal and understand completley what Im going through!! Love you all and the best of luck with everything!! Stay positive and warm!!
ReplyDeleteHi Lindsay,
ReplyDeleteGreat idea with writing a blog! So good to read other peoples stories and realise we're not alone!!!
I can understand along with everyone else on here the daily struggles we all go through.
I'm 27 and have had RA for the last 4 years.
I was on 20mg methotrexate which I injected into my stomach or thigh weekly, took 6 sulfasalazine tablets a day and 2 hydroxychloroquine tablets a day also, however after getting married last year my husband and I decided we wanted to start a family, so in March this year I came off the methotrexate and hydroxychloroquine and lowered the dose of sulfasalazine and I'm very fortunate to say I'm now 18 weeks pregnant and off everything.
I've heard all sorts of stories about how RA goes into remission once you become pregnant, but I have been one of the unlucky few for it not to have. I have been to the hospital today for a steriod injection and some specially made splints, as I am going through a flare up at the moment.
RA fortunately only seems to affect my hands and wrists but I have a few different types of gadgets to help me with day to day activities to make life easier, I'd be lost without them!
I try my best to keep a positive outlook and not let it get me down and just get on with it.
My hands and wrists seem to be swollen and in pain most of the time and the pain is something I live with on a daily basis too. But I refuse to let it get the better of me, and I'm so grateful that you've set this up and will be following you along with many more,
Thank you for opening up to us all
Emma :)
Hi, I have been reading all these great comments, it's nice to know that there are other people out there who go through exactly the same thing every day. I was diagnosed at the age of 15 (now 30) and have had several joint replacements, more to come too! It's hard for people who don't have arthritis or similar diseases to understand completley, it's not just the odd ache and pain!, reading things such as this really helps, thanks everyone!
ReplyDeleteMichelle and Reegan, there is info all over the internet (where else, lol) about gluten and autoimmune connection and something called leaky gut.
ReplyDeleteI read about it in a book called "Why do I still have thyroid symptoms" about Hashimoto's thyroiditis, my second autoimmune disease, diagnosed in 2003.
I stopped eating bread, pasta, rice, etc when I was diagnosed with t2 diabetes and RA in 1997. I didn't go cold turkey, but I did notice that after eating some foods, mainly grains, my pain and inflammation would increase. I was on metho and enbrel until 2009, when I went off meds and I want to stay that way.
I originally added soy to my diet because it did not affect my diabetes as much as bread and pasta, but turns out it's not very good for the thyroid and contributes to leaky gut which aggravates many autoimmune disorders, thus the hashimoto's.
I started the Paleo diet a few months ago, which generally is a diet of fresh, whole foods; meat, vegetables, fruits and no grains. It also eliminates grain/soy fed animals from the diet. Basically, the more natural the animal's diet and living conditions, the better. This is not usually found in your neighborhood grocery store.
It has been a tough transition, but well worth it. I thought I was going to have to start on RA meds again until this came along. still having issues with hashimoto's, however. I'm looking for a doctor who is willing to work with me on this. My rheumatologist never discussed diet with me either, and every time I brought it up, he discounted it. same with endocrinologist and hashimoto's.
Anonymous-I don't currently take anything for my Raynaud's. I live in a state where winter weather lasts 7-8 months of the year and suffer from this all the time. I used to ski but don't anymore because it is too painful. Does anyone here take any meds for this condition and does it help?
ReplyDeleteHi, welcome to the blogging world. We seem pretty similar except I ignored the pain and suffered in silence. Congratulations...its hard work cause of the typing involved but they came out with a new program that you can speak instead of typing. I haven't started looking for it yet myself. Look at www.rawarrior.com I think she had the best blog and website around. We can all learn a lot from her.
ReplyDeleteHi Lindsay, Can you tell me what is Iritis ? I have RA and I'm on methotrexate and Plaquenil. The hair loss is VERY annoying, but I prefer that than being unable to have a normal life. In my case, RA is pretty much under control, I can do sports but I am often tired. I think you are very brave stopping your medication when you're pregnant, I know you don't have a choice but still, it takes courage ! Hope you're doing fine today, have a nice day !
ReplyDeleteI wasn't able to read all the posts bcs I am getting a bit tired sitting at the desk. I have tried the no meds things before too...and it can seem to work, but I found out that I have bone loss in my hands and elbow. I have lost full range of motion in my right arm too. Everyone is different and I know we all have points in our treatment that we dont need meds I just caution those who do go med free to keep getting tested and have x-rays. I will never get the bone back that I lost by being stubborn. I hate methotrexate...it makes me sick and I am skeptical of most of the meds really but I have 8 kids that rely on me and I will do what it takes for them. Some days I dont want to move. Some days I just want to cry and sleep all day. Its exhausting. I also have Hypothyroidism which kind of makes the RA worse bcs if my thyroid slows down the RA flares up a lot.
ReplyDeleteAnyway...Im not saying it isn't awesome to be med free...just dont risk bone degradation. Be smart abt it and stay on top of what is happening that you can't see.
Michelle
CNY
My name is Deb, back again. I was the 46 year old with RA and Fibromyalgia.
ReplyDeleteI am so angry and so tired of tiring to explain my symptoms to my boyfriend. It causes major fights and is one of the causes of us breaking it off. FATIQUE, YOU HAVE IT AS A SYMPTOM FROM FIBROMYALGIA AND RHEUMATOIND ARTHRITIS, AND THEN FROM THE MEDICINE IT MAKES IT WORSE. CROINC FATIQUE IS ALSO A SYMPTON OF FIBROMYALGIA AND ON TOP OF THE MEDS IT IS WORSE!!!!! Why the hell do they think you have a problem if you fall asleep in the oddest places? Sitting at the desk, on the toilet, in the chair, sitting up in bed and of course you fall over to the side. Your sitting in the chairs outside and you lay on the rug.
This is one of the reasons I do not work!!!! This is one of the reasons I do not drive long distance!!!!! But do I have a problem, YES HE SAYS I DO. HE THEN GOES AND TELLS EVERY FRICK........ FRIEND HE HAS. Oh, so I abuse meds (twice in my life), I am nuts, I am crazy, I should be committed. This way it looks like I am the one with a problem.
ME HAVING FRBROMYALGIA AND RHEUMATOID ARTHRITIS AS A SYPMTOM OF FATIQUE AND CHRONIC FATIQUE AND MEDICATIONS is my way of life AND SO YOU HAVE A PROBLEM! NO, I DO NOT HAVE A PROBLEM, IT IS AN ILLNESS. I WAS OUT OF IT, CRASHED, HOW WOULD I HAVE HEARD YOU? I AM SO SICK OF IT! BECAUSE OF THIS I AM NOT NORMAL AND IT IS SOMETHING THAT YOU RUN OUT AND TELL EVERYONE ABOUT SO THEY WILL SEE SOMEONE ELSES PROBLEM.
THIS IS WRONG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Just had to rant, too upset, thanks for being there.
Deb Lundberg
I'm glad to have read your post Michelle because I was starting to think I should stop medication since I feel so good. I have a few pains here and there but nothing too dramatical. I never tought of what is happening inside that we can't see or even feel maybe. Thank you for reminding us !
ReplyDeleteI've had RA for 5 years and took Humira shots once a week for the last year. It isn't helping, I'm starting Orencia infusions every 4 weeks if my insurance approves it. I have heard of antiobiotic therapy though and am very interested in this!! Has anyone else heard of this?
ReplyDelete