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Hello, my name is Bianca Cox and I have Psoriatic Arhtritis and Spondalyathrapthy. I have read everyone’s story and I am glad that people are speaking up about thier experiences. I also want people to know that they do not have to suffer. There are so many medications out today that help. Looking back I believe that I began to have symptoms with I was in elementary school. My back always had knots in it and I would beg people to massage my back. I also always needed more sleep than most. My symptoms did not come full circle and until after I had given birth to my second and last child. I was 3 months post partum and I woke up one day and felt stiff all over. I am a nurse so I inspected all of my joints and they did not appear to be swollen. I went to a primary care physcian and he ran lots of tests and then told me I had fibromyalgia but that there was nothing that could be done for it. That was 11 years ago. Anyway,It hurt so much to just move, much less take care of my two kids. I became almost comempletely dibilated and we had to hire a Nanny full time to help me with my kids. After a few years I did begin seeing a Dr. who specialized in Fibro and he put me on afew meds that helped somewhat but I continued to get worse. I have two sisers who both have arthritis and so I went to see a Rheumatologist – nothing showed up on my lab work and everytime I made mention about my sisters he acted like I had not even mentioned it. He did put me on a trial dosage of Prednisone and I immediately got some relief but he said I could not stay on it. I gave him a year of my life and then he finanally told me that I needed to go see a Pys.DR. My Fibro Dr. told me he was convinced I had a form of arthritis and told me to go get a second opinion. I did and I saw this new Dr. and she examined me and within 20 min. told me that I had Psoriatic arhtirits. I cried because I could not believe I had suffered by that time 7 years with this disease not knowing that I had it. It has taken a total of 3 years to get me to the point where I feel half way normal again. I take Rhemicade infusions every 5 weeks and I am on a long list of other meds but it has changed my life for the better. I am now able to take care of my kids without help. I do have someone who comes and helps me clean my house every two weeks. It is true that my life will neveer be the same as before. I still have to pace myself and I still have days when I hurt but I have more days when I feel ok then not. It is difficult because when I really sit down and think about this the fact is that everyday for the rest of my life I am going to wake up in pain and everyday I will have to get up 1 hr before my family does and take pain medication to help take that pain away so that I can be the mom that my kids need me to be. But I am thankful that there are medications out there that I can take. It has taken me a long time to complete the 7 stages of grief, but I have finanally come to accept the fact that I have a chronic illness and that it is not going to go away. I would like to encourage everyone to keep on keepin on. I will be going to Washington DC to help advocate for us.
Bianca Cox
Thanks, Bianca. We do have several Ankylosing Spondylitis readers. Let us know how it goes in DC.
Thank you ladies for taking the time to share your story.
I love this site I finally found people that I can relate to . When I tell my friends about my RA stage IV they really dont want to hear what you have to say. My RA is terminal so I just take my pain killers which they dont even work for me because I have it in both hips, both hands.both knees ,back and my neck and jaw.Seems to me that there is no one in the Bay Area that I can talk to so Im sure glad that I found this one. Does anyone know of any support groups that is near the Oakland,Ca area? Iam at the last sage of the RA and how lond they say I may have they cant tell me they just said Im terminal . I get discouraged a lot because I can get to the bathroom or I just cant walk so I have to take my wheel chair with me where ever I go because I dont know when I will have a flair up and be on the ground and cant get up. One day I was going up my driveway and both of my legs just gave out and I was on the ground and I tried to hold up on the fence thinking it wasnt that serious and there I went back on the ground it was like I was paralized so I just take my wheelchair with me where ever I go. I hope that everyone feels a bit better I know its hard because others dont understand until they go through our pain. May God give us the strength to keep on going. God Bless
Shanna, your story is so close to mine. I have a 4 year old and 3 months after giving birth to my second child I had my onset. Mine started in my hands, moved to my arms, shoulders, knees, feet, toes, I had it everywhere. But after seeing my rheumatologist I was put on metho and predinsone I have been almost in full remission. But people did not realize how hard it was to care for my baby when it was active, I could not open baby food jars, button his clothes, sometimes barely pick him up. Thank you for posting, I so relate to your story. My baby is now 7 months old and I enjoy getting in the floor and playing with him and getting to be a active mommy with him and my 4 year old. I hope you stay responding well to your treatment, God Bless
Shawna, It’s so good to hear your treatment is working so well. I’m so glad for you, too with those babies. :heart:
Thank you all for your stories. Francesca’s story really hit home with me when she spoke about how difficult it is to deal with all the advice given by non-rheumatologists. I, too, have been told that I am a tool of the pharmaceutical companies, or that all I need to do is go on a water-only 14 day fast, or that if I just learn to be happy and have a better attitude everything would change! I am grateful for my sense of humor, as it has enabled me to brush most comments off, but I still get frustrated. When I was first diagnosed, my rheumatologist warned me that I am going to hear a lot of advice from people who really have no understanding of the disease. That also really helped prepare me for the onslaught. I am deeply grateful for RA Warrior and all the people who have contributed. Thank you.
Francesca and Barbara … I too completely understand. While I was fortunate to get a diagnosis from my rheumatologist within a first visit, 2nd, etc., I have had to put up with people who say to just take an Aleve and you will feel better. They also are quick to say that they too have arthritis and they just live with it. So, in other words, I should be doing the same thing.
The fatigue is mind numbing and without an afternoon nap, I am pretty useless. I am now on an Actemra infusion and it has helped greatly … but it doesn’t eradicate the disease and you are never sure when you will get a flare. I am currently in a flare and the pain is terrible, the fever, the fatigue is all pretty crazy. I really wish there was a different “name” for RA as people think you are just a wimp and you can’t handle it. They assume that it is just “arthritis” and everybody gets it sooner or later. I am fortunate that I have a great husband who really understands the disease and has gone to many of my appointments.
I live in Canada and was fortunate to be able to get an appt. in a few weeks and he (the rheum) knew right away what it was. I now see him every 6 months to monitor how everything is going and I would be lost without him.
I too have family members who are shocked to hear that my thyroid, gallbladder, and definitely my kidneys have been affected by this disease and also the medications but I can confidently say that I got my life back with my Actemra infusions. Thankfully … with government support I don’t pay for them … I would never be able to afford it.
Stay strong my fellow sufferers … I feel your pain.
Ok Kelly – I just had a good cry – so many stories- I can relate to them all. Will get mine to you. thanks for putting together this avenue for all of us to share- it truly helps.
Shanna, your story is so similar to my daughter. After the birth of her first (and last!) child, conceived after 3 rounds of IVF, she started with aching shoulders/upper arms. We put this down to lifting a baby plus his car set around plus they had just moved house so she had lifted stuff too. However, one morning she just could not get out of bed and this was about 6 weeks after the birth. I have read on many websites, stories from new mothers who all started with RA after childbirth.
I spent most of my free time, when not helping with this new baby, Googling RA and found Leaky Gut and food elimination amongst other things. Tess did go to a nutritionist and it was her treatment with probiotics and food elimination that gave Tess almost immediate relief She did suffer what is called a Herxheimer Reaction at first but once that was over she was as good as new. Tess continued to eliminate many foods as she felt good but she lost a lot of weight and went down to under 7 st and size 6 (English size) and because of this had to go back to her normal diet, at least for a while.. The pain came back. In December 2010 she was offered Humira as she was found to have joint damage. She had been on Sulfasalazine when she returned to work and also offered MTX which she tried three times but this gave no relief and she didn’t like it anyway. It was then she went to the nutritionist.
Once Tess was on Humira, having gained weight, she started back on the food elimination diet. It was obviously difficult to tell whether it was the Humira or the diet and I did ask her to delay the injection for a week or so to see what happened. She didn’t do that until the October 2011 when she forgot. She has not injected since that time and has been really well. She found, even on Humira, that if she ate tomatoes inadvertently, she would get pain. She now believes that dairy foods and tomatoes are the biggest problems to her.
I do wonder whether the extra consumption of milk whilst breastfeeding pushed her over the edge as it were! She was never a milk drinker and still isn’t but to increase breast milk was drinking chocolate flavoured milk. It makes one wonder. Leaky gut is not uncommon as Candida can be worse when pregnant and food particles can leak into your blood stream. Your body then sees this as an enemy and this causes the inflammation. We can all suddenly acquire food intolerances. There are many books on food and RA. English rheumy has written a book on diet and RA – Dr Gail Darlington. There are many others including one called Conquering Arthritis written by Barbara Allen who also has a website.
Acidic foods are to be avoided by Tess as far as possible and she keeps an eye on her PH levels – you can get testing strips online.
I wanted to mention a curious detail. I noticed that in a significant number of onset stories people had an excessive level of stress prior to onset. I have always hated my doctor attributing all things to stress, however, I have definitely notice symptoms getting much worse in times is stress. Which for most people is a daily reality. Also, I started smoking at 14. Prior to onset I had quit and gained weight. I started again and have not stopped loosing weight since. I lost sixty five pounds in 14 months without diet or excersise. I was also prone to bronchitis and pneumonia almost annually.
Francesca- I am 39 and was diagnosed with RA in April. I can relate to everything you wrote. I hate to complain but feel like I have to talk about it. I have said nothing on Facebook because I agree the reactions will not make me feel better and could be hurtful. I am not a good actress and when I hurt pretending everything is fine doesn’t work for me. And since RA is an invisible illness I look fine. It cant be that bad right? I felt comforted after reading your entry. Thanks for sharing.
I have noticed that most of the you have the had the onset after giving birth I am 50 and I’m still waiting for diagnosis diagnosis my RF Factor is very high I have pain in my neck my back my elbows my wrists my fingers my toes my eighmey my ankles I have tendonitis in my Achilles heel on my left side and my toes crack a lot which they never have before I’m still going through testing and not much pain cuz I’m on hysingla and Neurontin I still have pain but I am still able to continue my daily routine penny
My doctor says back pain is not RA but I have read that it is. I think even doctors are confused. If your doctor says that back pain is a symptom please post this?
I pray you get a diagnosis and help very soon!
I am unable to join your mailing list. Could you add me? Thanks
U am 64. I have had RA for nearly half my life. I have hand and neck–cervical spine– surgery due to RA. I was recently hospitalized for 19 days because I had RA-caused pneumonia, collapsed lung and pleural effusion. I had two lung surgeries. I have RA -caused lung disease. These lung problems were caused from RA inflamation. This is just as reminder that RA does not attack joints only.
I was fine until age 26. I tried avoiding an animal on a highway going 55 (the speed limit) but when I swerved, my front passenger side tire hit the edge of a metal culvert and popped. I don’t remember this nor the day prior or 2 days after, but what I was told was that my vehicle immediately started to drift into the field in circles, of the ground mostly, until it started hitting trees. This is when a flailing elbow must have hit the seatbelt release button and I was ejected just as I hit a tree, sending me so far in the air that my shorts hung on a tree branch 15 ft above ground- meaning I was likely on my way down when my belt hooked onto the branch. I lived in a swampy area outside of Daytona Beach, Fl so the soppy land allowed me to skid until I came to a stop, (thankfully) face up in the swamp, 50ft away from my vehicle. Long story short and 29 broken bones later, my life, what was left.. was forever changed. I was young and poor and had no health insurance as I was a dog groomer working at a shop with just myself, the owner and one other groomer. No benefits at a shop this small, the cost was just too high. Besides, we were 1099 “employees”. Fast forward a year when most bones healed (the seven that didn’t heal by then never did and I’ve had 13 surgeries since) and I started to experience pain in joints that I didn’t feel were affected by the accident. Most of the bones broken were clavicle, jaw, zygomatic arch (cheekbone), skull (4 places), all right ribs, 4 left ribs and my left hip was out of place for over 3 hours. (I wasn’t able to be rescued by foot and was airlifted and that takes time after discovery and waiting on foot patrols/rescue teams). So, I’m going about life and trying to figure out what type of work I can do since I had to sell my home and move back to NC where my mother could help care for me. It just seemed the “better” I got recovering from the broken bones and surgeries, the more I hurt in other places. Was this due to hurting so badly in some areas that I didn’t realize I was hurt there, too? So, off to the doctors I go. I reluctantly landed a restaurant job after being rejected for 75 other jobs for lack of experience but they had health insurance options which were golden for me! Anyway, I found every doctor I went to said my pain was from my wreck, I was told I had fibromyalgia, I was told I had Lyme, Rocky Mountain spotted fever, was being sent to every type of orthopedic specialist that existed and was on sooo much medication and still I felt no different. I had “bakers cysts” behind both knees, I had “bursitis” in both hips, sometimes literally even crawling into Urgent Care clinics. This went on for years!!! I had six ribs that never healed and participated in a rib non-union study for a Dr that invented a rib fixation that unfortunately wouldn’t work for me due to where the breaks are but it was a GODSEND! That Dr had me do studies at local clinics and send them my MRI, CT scans and X-Rays to study. Something didn’t add up and I was sent to INC-Chapel Hill where an oncologist (I was sent there and had to exit the rib study due to lung nodules that were later confirmed after 3 years of being watched as “stable”) bit this oncologist told THIS to me and my MOTHERS faces. “You either have some type of odd bone cancer or Auto-immune disease and if it’s that, you usually have more than one.” I was then referred to Duke University for Rheumatology appt but the wait list was 4-6 months and that was on a cancellation list! So, I went home, cried, had blood and urine tests to rule out cancer and went to my first Rheumatologist. She refused to look at my X-rays and told me I had what was called osteoarthritis due to the wreck and I was too young to think about autoimmune diseases. Case dismissed. I was defeated and depressed and hurt but I kept powering through and going to Urgent Care for more Relefen and prednisone for years and years (9 to be exact) before I moved and had strange pains all over and after 6 different doctors were dumbfounded not being able to diagnose me, I was sent to yet another Rhuematologist. I felt like I’d never get anywhere. She did so much blood work and said so many things were elevated and she felt it was definitely autoimmune and started me on daily prednisone regimen. After almost two months, she finally said “this would be crazy if this is it but there’s one strange disease no one ever gets and I’m going to test your levels of ferritin”. It came back very high and I was diagnosed and treated for Stills disease. After that subsided, the psoriasis that I had as a kid but was never formally diagnosed with was back. I still go to this Rheumatologist to this day. She is literally a life saver!!! Since being diagnosed, I was also diagnosed with Hoshimotos Thyroiditis with goiter and nodule. Seems that Dr was spot on with if you have one you have more than one. In my case, 3. My Dr still isn’t sure if I’m more PSA or RA since I have equal signs of both and blood can only differentiate along with symptoms but the treatments are the same. Methotrexate was started and since being on prednisone for over a year already, I had to slowly taper and after another year I was prednisone free (keeping some on hand for flares only) and MTX was LIFE CHANGING!!! I got my life back! But, the day after taking 8 of those tiny red pills, I would sleep and was so lethargic I barely made it to the bathroom to relieve myself. Day two, I would throw up. After a year of this and my Dr begging me to switch to injection form (yes I’m a baby when it comes to needles), Rasuvo came out with an auto-injector and she was able to sway me. Again, LIFE CHANGING! Now, I take my easy, peasy Auto-injection among with daily folic acid and a Leucovorin tablet every Saturday morning and I have ZERO side effects most weeks! So, if you’re on the fence, do it! My dr even hooked me up with core connections so my injections don’t cost me a penny! What a relief after all these years! Unfortunately, what brought me to this site was a recent surgery and not being able to take my MTX for the last six weeks which has caused one of the biggest and longest lasting flares I’ve ever had. Luckily, it only attacked my fingers for 3 days (trigger fingers and swollen, painful joints) so I can surf the net for other stories so I don’t get depressed. Sorry so long, but I have to admit- writing this helped me so much mentally. I highly encourage anyone that’s read this far to also write their own story. To everyone else that wrote before me, thank you. It’s not that misery loves company, but it’s that being miserable and not feeling so alone is nice. So, thank you again. Take care.
Thank you all for these stories. I too was misdiagnosed or rather undiagnosed and thought I was crazy for years. It is a feeling that is hard to understand if you haven’t been through it. And I have the fatigue now. Luckily I am not having all the physical symptoms. I hurt and fingers are a bit swollen and wrists and hips hurt. It is hard to walk most days. As long as I take turmeric I can keep moving my hands. I was recently put on plaquinel (sp?). A low dose. I am finally dx and the test are quite elevated where they were not 20 years ago. But my doctor insists the fatigue, no sleep, low grade fever, mood swings etc is not RA. At least he is looking into other things. It is hard to work being so tired. I did it 20 years ago too like all of you and now I am older, I do not know if I can. I have short and long term disability at work but doctor said fatigue isn’t enough of a reason. I will power through for now. Your stories empower me because I realize I am one of the lucky ones to not have it so bad yet. Prayers for all of you struggling with whatever symptoms you have. We are not crazy. There is something wrong. Keep fighting to figure it out!!