Karen’s Rheumatoid Arthritis story
Jackie A’s Rheumatoid Arthritis story
Simone’s Rheumatoid Arthritis story
This is Karen’s onset of Rheumatoid Disease story in her own words.
I was very young – around 5 years old – when I woke in the middle of the night with excruciating pain in one of my heels. It burned and throbbed, and when my mother came to look, it was red, swollen, and hot to the touch. Mom was baffled and could only think that maybe I was sensitive to polyester socks?? I remember that it went away within a day or so.
Between the ages of 10 and 27, I developed a knee problem that would came on out of the blue for a few weeks, then wouldn’t happen again for a year or more. I only noticed it when I had to sit in one position for too long, where I couldn’t stretch my legs out. A tremendous pressure would build in them, a horrid hot, painful, throbbing ache that would grow and grow until I was sweating and nauseated from the pain. Eventually, when I could finally stretch out, I’d almost pass out from the enormous relief. It would take me several minutes to breath normally and compose myself. It was so painful, but I accepted it as just a part of me. Since it didn’t ‘seem’ chronic, I just dealt with it whenever it popped up.
When I was pregnant with my first child, at age 27, I remember having one of my bad “knee attacks,” but for the next 14 years I was symptom-free. I went on to have another child, began jogging, but my knees would start hurting and swell some, so I had to stop. I was really sorry to stop because I enjoyed it so much, but my knees were not meant to run. By then my knees made lots of clicking and clacking sounds, but I still had no idea there was anything else going on.
I had my 3rd child when I was 40, and a year later I began developing a lot of pain in the thumb joints of both hands, at the base of the thumbs. I tried ibuprofen, aspirin, heating, but nothing helped. I thought it was caused by having to pick my daughter up so much. It grew worse and worse until I could no longer open jars or even button shirts. If someone shook my hand, it was agony. I saw an orthopedic specialist who told me to put my hands in braces that would immobilize the thumbs and see if it helped. It didn’t. I saw him several times, and not once did he ever tell me I should see a rheumatologist. I got frustrated and stopped seeing him, and, to this day, I am appalled at how an orthopedic specialist could not at least think of the possibility of a degenerative joint disease. All he thought of was tendonitis and overuse.
When I was 42 I became pregnant with my 4th (and last) child. Surprisingly, during the pregnancy, my hands stopped hurting completely! I thought the pain would be gone forever. Unfortunately it returned after my daughter was born, and I lived with the constant pain for several more years. I thought since I had 4 children and so much to do around the house that my body just hadn’t gotten used to it all yet. During those years, between the ages of 43 and 46, I also began feeling more tired and had depression issues off and on.
I can’t remember how I finally figured out I needed a rheumatologist, but somehow I did. The first rheumatologist I saw was fairly young, maybe 30ish, so I thought great, she would be up-to-date on things and would be able to diagnose my problem. By then I had read up on possible causes of my pain, and had noticed my right middle toe was swollen at the middle joint. I thought surely, with symmetrical joint involvement and one that is obviously swollen, it must be RA. But, despite blood work that did show I was positive for ANA and Rheumatoid factor, she said I did not fit the criteria for RA! She thought more along the lines of Lupus, but would not prescribe any medication for either RA or the pain. I was so angry and frustrated. Maybe 6 more months went by until I found another rheumatologist, and by that time my knees and hands were even worse.
My new rheumatologist is a godsend. This wonderful, compassionate, incredibly intelligent woman knew right away that I had RA. She took her time, showed me with drawings what my joints were doing, did a thorough physical exam, and could tell without even touching me that I was horribly swollen. I remember having x-rays taken of my hands that day, and it was impossible for me to flatten my hands down all the way. She put me on methotrexate and I soon felt relief. But for months I was in depression over the diagnosis of RA – it felt like a death sentence. I was an artist, loved needlework – everything I did was with my hands. I remember packing up all my needlework items and sending them to my sisters.
Through the last 8 years after my diagnosis, I have had ups and downs. Flares where I had to sit for several weeks with heating pads; Baker’s Cysts, had fluid sucked out of my swollen knee joint (talk about pain), knee debrided, been unable to walk or go upstairs normally, and sometimes just sit and cry. Some days I just wanted the family to go out and have fun without me. I’ve been off and on most of the meds, from oral to self-injectable to infusions, and back and forth when liver functions go too high or meds stop working. I’m actually doing pretty well. One knee is bent inward a little but nothing major. Both hands look a tiny bit off but still, it could be worse. My rheumy said I would need knee replacements someday. But for now I’m very lucky to get the meds I need.
I’ve been interested in the genetic factor of RA, because I have it, my younger sister now has Psoriatic Arthritis (PA), my 24 year-old daughter AND my 27-year old son now have RA, and just this week I found out that my 15-year old daughter has a positive ANA (with all the symptoms of RA). Even worse, my 12-year old has had symptoms of RA or Lupus with severe gastrointestinal problems and will be tested next week. My paternal great-grandmother had it, as did her daughter, so I know this disease goes back to at least 1870. My maternal grandfather also had it later in life. That may explain why my sister and I have it, but does it explain why 3 and possibly all 4 of my children do?
At this point, I see RA as being “part of the family.” Other families get double joints or white freckly skin – we get RA. But I am thankful for the medicines that are being developed today, and I’m happy to say that, while I may not be able to hand quilt anymore, I can still draw, paint, stitch, walk, and even dance. My biggest wish is that all my children will be able to do the things they love for the rest of their lives.
Jackie A’s Rheumatoid Arthritis story
I’m weeks away from 53 & was given a diagnosis of RA last May, 3 months after the onset of hands & wrist which were hot red swollen. This came about after typing an 8-page letter under severe duress and even mentioned in the letter, that I could barely type, despite previously being able to do volumes of work. I was given kenalog steroid injection in hip & this really did help for a few days but then swelling back again. I have suffered severe neck pain (physical damage due to accident 20yrs ago). the steroid jab helped this pain and for 1st time in years, I could move my head & neck properly.
They said I had severe end stage RA with deformities appearing on my hands & wrist and prescribed methotrexate. I researched this drug and decided that my body was in too weak a condition to embark on this route just yet. id had adult chickenpox and lungs filled with scars plus undiagnosed pneumonia which had left huge ripped like scars in my lungs. my diet for the year or so before dx was totally awful despite a previous lifetime of healthy eating and more than adequate exercise. I had done long distance running and was an avid sea swimmer.
Then, things started to click into place and I realised I had this condition since childhood & all the doctors and specialists agreed. talk about shock!
I have RA in 5 joint of my cervical spine, both my shoulders are seriously damaged, my wrists are weak and painful and my hands still wont make a claw. I can now type a little more, but 2 full pages and off I am on the swelling trip again.
All the “old injuries” which have in theory flared many times in my life have now come back to haunt me. my throat is hoarse, I am continually dying of thirst. My muscles have been eaten by the disease and I have lost over 1 stone of normal weight and now underweight by about 4lbs on the “danger” level. I eat more than the required calories but putting on even an ounce is a big strain.
My knees are swollen and I can’t use a stick because of the damage to my shoulders & hands. My mobility and ability to care for myself have declined in ways I could not have imagined.
I’m still saying no to the RA meds as they are intended to be used in cases of early diagnosis. The most sleep I have had in a year is roughly 1hr at a time. I wasn’t tired at first, but now I have to lie down all the time. I am very lucky that I run my own business from home and can just about function to keep this going but at a very slow pace.
I never was anaemic and am not now. I’ve screamed for GOD in the night but sometimes even he hasn’t been there. I’ve felt like cutting my hands off, but like the physio guy said, when you cut off one, how will you manage the other? duh! affects your brain bit time eh?
Lots of people have given me support and practical help and the rheumatologist guys respect my decision over meds, as I have done so much research and cant really find a positive reason for taking them at quite this stage. I’m going off my head with the pain most days, but really its the loss of function and ability to exercise that are really doing my head in. I’m a multi-tasking, high energy, need little sleep kind of person – well that’s who I was – not so sure and confident now.
Sometimes I feel like I’m really gambling with my life by not starting on the disease meds, but deep down, I know this is the right decision for this moment in time. all the health care in Scotland is free and this makes me feel guilty when I receive £84 worth of protein health drinks to make me put on weight. I would pay something but our system doesn’t work like that.
I believe that more needs to be done to promote this disease as people don’t take it seriously – they tell me I look so healthy and really well and to think of those with cancer or heart disease. they can’t equate with the truly serious life risks attached to RA and I’ve started to say I have severe autoimmune disease when i need to explain my condition.
I’ve lost a great deal of the empathy I used to have for many people – I worked as a homeopath and counselor for PTSS and sometimes, others whining about their problems makes me just wanna give them and shake & stop feeling sorry for themselves!
I’m working on reducing the swelling – I’m aware that this disease is eating away at my body but still somewhere in the stubbornness I’ve always had, I feel that I should continue my life as I did before DX. I had all those years free of meds and believe in a holistic approach to healing. stress & diet did play a major part in this current flare, as well as my hectic happygolucky lifestyle. I feel lucky that I am alive. I feel lucky that I can work and drive. I feel very lucky that the NSAIDs do work just a bit for the pain. I also sometimes think I must be really stupid to go it alone with this disease, but know that the medical people are there for me if I need them.
This is a very shortened version of my story of RA but just wanted to give an alternative viewpoint on treatment as I feel many people are bullied or brainwashed into taking these heavy meds because their pain is so great and they will do anything to try to relieve.
This is Simone’s onset of Rheumatoid Disease story in her own words.
My name is Simone. I am 33 years old, a widow and single mum. I have three children aged 6, 14 and 15. I live alone with my children and my horses.
I have a disease called Rheumatoid Arthritis. In summary RA is an autoimmune disease where the immune system attacks your joints mainly but can move on to other tissues and major organs throughout the body. This can cause inflammation, swelling, pain, and over all fatigue. I was diagnosed when I was 20 years old and put on prednisone and Plaquenil. From long-term use of the prednisone, I now also have Osteoporosis.
Between being ill and having broken bones (last count 13 in 18 months) in my feet, I also have 1 child who has a disability as well.
My life is a huge struggle every single day. There is one thing in my life that keeps me going, it helps me to get through difficult days and to feel like me again. That thing is my horses. They have great shoulders to cry on, give the best hugs but most of all I love to ride! Unfortunately between my bad joints and my recurring foot fractures and the possibility of fracturing my spine I have not been able to ride or even spend quality time with them.
My dream is to ride and keep on riding and even the possibility of taking the horses out to shows. I am 33 not 83! I do not want my illness to take away the one thing that gets me through every single day! If I cannot ride, I might as well be in a nursing home. I would really like to be able to continue with my passion for as long as possible before my illness tries to take it away.