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Ladies:
These stories sound so much like me. I won’t take you through my symptoms except to say that my pain started in my shoulder too, and I was diagnosed with shoulder impingement and treated with multiple cortisone injections. In addition to bilateral joint paint everywhere, I now have the cysts. Only they’re not just in both ankles, they’re also in both wrists, both feet, and on one knee. We’ve just moved into one story house because I couldn’t carry my 17 month old upstairs in our old house. I’m waiting on a RD appointment. I have a positive ANA but my RF is low. I have a family history of RA. My internist keeps saying fibromyalgia. I too have a pharmacy in my bathroom. I’m terrified that the rheumatologist is going to be equally dismissive. Today I couldn’t even keep my hands firmly on the steering wheel of the car… Thanks for telling your stories.
Hi Amy, I’m sorry you are going through this. If you are “dismissed” it will be tough, but keep trying. You need an answer. Many RA patients get the Fibromyalgia comments first & then it’s changed to RA. Either way, don’t give up.
Thank you for sharing your stories. It just blows me away how long it took for your diagnosis. It is unbelievable the ignorance of some doctors. I learn from every story I read, thanks again.
Kay, Leigh Ann and Vicky I am so sorry to read about your pain and confusion. I am right there with you ladies I am 48 and 3 years ago I woke up and when I went to get out of bed I felt as if I had bricks tied to my knees, the pain was unbearable. Fast forward to now I have RA I am on Enbrel, 17.50 mg of MTX once a week, Folic acid every day and Celebrex 2x a day. Ok that is the meds. I have a stool in my shower because I cannot stand in the shower long enough to do all I need to do. What about a bath? Ha I can get in with a big splash, but getting out that is a whole other story with a unhappy ending- so I no longer try. I put my shampoo and conditioner in soda bottles because the mouth is bigger and this means no squeezing. I have a spaghetti dipper I use to wash my hair with when I can only lift my arms so high. I have front snapping bras when I cannot bare the pain of snapping my bra and turning it around. I have quilts that my mother gave me which I no longer use because I did not have the strength to pull them up on me at night. I now use light blankets. I have a stool to set on between my sink and dishwasher to help me do the dishes. I have to walk backwards down stairs so my knees do not feel as much pressure. I did not go upstairs in my house for two years. When my wrists hurt my son picks me up and drives me to & from work. I can’t pick up my grandchildren. That infuriates me, they cannot sit on my lap because this hurts my knees. One time I was going down the stairs of my sons home and my grandson son said look BeBa I am walking just like you. Now it is funny but then it was so incredibly sad. Seat belts, ignition starting and removing the gas cap were a nightmare. I will not even go into the bathroom detail unfortunately you probably know what I am talking about. When the RA gets in my jaws brushing my teeth is nearly impossible. Sometimes you just have to use mouthwash. LeighAnn I know about the hand/claw thing in the morning I would have to set my alarm a hour earlier than I needed to take my celebrex and do my hand exercises. I have to use plastic grips on doors to open them. One morning I woke up and I was in such a bad mood or a pain mood anyway it was raining outside and my son was knocking on the door and I heard him say mom hurry I am getting soaked. I started laughing- When I finally got to the door I told him the one thing you never say to a person with RA is HURRY. I am doing much better now and sometime I too wonder how I stood so much pain before the Enbrel and Celebrex. God bless those who do not have insurance and cannot afford medication. Ok I could go on for ever and ever and ever but I just wanted to say I will pray for you all.
all of you are “reading my mail” as they say. It is such a relief to find out you aren’t crazy. Thanks to all and best wishes for better days ahead. Never give up and NEVER walk in fear!!
I think Rheumatoid Arthritis is a horrible disease.
I suffered for three years in severe pain and felt no hope of ever finding out what was wrong with me. I was so swollen, sore, just the weight of a sheet lying on my feet was excruciating. The worst part was that I kept telling the Doctors what was happening and they didn’t listen to me. They thought I was a menopausal histerical woman with too much time on my hands. Truth be told I didn’t have a good Doctor. I switched to another Doctor and she was mad. She sent me to the Rheumatologist immediately. Hence I was on prednisone for over a year, methotrexate, etc. I think the thing that hurt the worst besides the physical pain was that no one could see why I hurt. Eventually blood tests and swollen joints were proof. I felt so all alone because I knew something awful was going on with my body but it took too long to prove it. I feel for anyone who has RA.
I feel very sad that your experience is quite typical of what I’ve heard. Thank you for sharing with others here. Today’s blog would be a perfect companion to your comment! http://www.rawarrior.com/the-path-of-mercy-in-medicine-a-tale-of-two-doctors/
Wow, all these stories make me feel there is hope and I will find and answer. I am a mom of twin boys, very active, served in the military as a mechanic, and still work on airplanes. Been turning wrenches for seven years. When I joined I was out for two weeks cause my legs swelled so bad I could wear shoes, and covered in bruises. I had my boys a little over a year after. I went from doctor to doctor for pelvic and hip pain. Exams, test, blood, and the stress, experimental surgeries. Nothing was found and overload of Motrin that’s their specialty. Well after I got out of the service I had enough, I went to a doc who did free xrays. I have spondlyothesis, L5 is slipping of S1, and eventually need spine fusion. But still have hip pain, now I have been diagnosed with raynauds disease, bad blood circulation in my hands and feet. My hands swell and turn bright red like a tomato at any hard work, they can turn purple, as well as numb pain dropping things, and cramping. But now I have been told no carpal tunnel, so I am in waiting to see a rheumatologist. I’m to the point where I just want an answer, I don’t want RA but it would explained much that is left unanswered. Explains night sweats hand hips pelvic bowel problems everything fatigue. All the signs under the sun and just need an answer….
Hi i have been suffering for a while now and i think i am loosing my mind. I live in pennsylvania in the usa. It started with injuring my left shoulder. since then i was made to endure physical therapy. my body kept of feeling worse. I finally got a second arthogram MRI which indicates there iare no tears nothing wrong with my rotator cuff. My shoulder would swell and become red and hot to the touch. i was given prednisone and since then the swelling has not returned but the pain and spasms are increasing. my whole hand goes numb from time to time. now all my joints hurt and sometime pop when i move them. my back hurts something terrible sometimes and both my back and neck feels as if they will not support the weight of by head and body.
My blood work came back negative for RA, but my SED rate is high. i am tol i have mild aenemia and my thyroid is underfunctioning a wee bit. my body sometimes feel like its on fire centered around my joints but i have no temp on the thermometer and my joints are not visibly swollen. the last symptom to emerge is the pain around my rib cage. it feels as if I did a whole bunch of sit ups or someone used my rib as a punching bag. I feel as if i am loosing my mind and no one can give me any answers. the pain is sometimes intolerable. Can anyone shed any light?
PS My last doctors appointment I sat in the parking lot and criued. I cried because the doctor was awful and argued with me about my symptoms. i cried because i felt so alone. i cried because i am begining to wonder if the symptoms are in my head. as i type my fingers have begun to hurt. i just need some help…
hi Melodia, the symptoms you describe sound typical for rheumatoid – but sometimes a diagnosis takes a while to be clear. There is not a blood test that can show whether you have it, especially early on. One third of patients have negative blood tests for the tests we have now.
The rib pain might be this: http://www.rawarrior.com/chest-pain-in-rheumatoid-arthritis-costochondritis-anyone/
I’m sorry about the crying in the car – I can’t tell you how many people have said the same thing – many. You described exactly how it is for many of us – that’s the reason for the work of this site. Don’t give up trying to find a doctor who will help you with your symptoms instead of argue with you about them.
Thank you so much for your response. Yesterday my doctor says he now thinks I have fibromyalgia and he thinks the pain in my left shoulder is from my neck. so here we go exrays and MRIs for my neck and some low dose treatments for fibromyalgia. I wish for just 1 pain free minute, just one.
I just feel like screaming because no one seem to hear me…and yes the article about my rib cage seems just right! It was so painful when i breathe. It has now subsided. I freally fear that I will keep going from doc to doc for the next five years or more, while trying to live with this pain.
I just want to tell everyone here to do an elimination diet – a strict one where you eat brown rice, vegetables (no nightshades), Fruit (no citrus, includes bananas, and if you can’t take it a full seven days add organic turkey to the diet. If you’re RA is food allergy related you will get a big improvement in about 7 days. You can then try dairy, see if your symptoms flare again, waith 3-4 days reintroduce gluten, see if symptoms worsen, etc. RA is often related to leaky gut and irritation/inflammation in intestines – heal the intestines where 70% of immune system resides, and it will help body to stop attacking tissues. Please try this – what have you got to lose?
Hello all, I’m new to this forum and newly diagnosed with psoriatic arthritis. All my tests were negative and I never really had severe psoriasis, but I think the rheumatologist could definitely be right about this being arthritis. I’m 25 and just worried that I don’t have the right diagnosis and wondering if anyone here had ONLY tendon pain and no bone pain. I got bilateral wrist pain at age 16 that lasted three years and was aweful. A year ago, at 24, I got tendonitis in my left foot and have had to drop school and work because it’s just not healing. Now I’m getting full blown rib pain and knee pain, but it feels more like the muscles surrounding them than the bones. Does this sound familiar to anyone? I am actually HOPEFUL that it’s arthritis and not something else, because it would mean we’re on the right track. I just started methotrexate a week ago and had some good days but now today I’m so stiff again I can barely get around my house. So if anyone has had any success with treatments for issues like this, or thinks that this sounds like arthritis, please let me know! I’m very worried at 25 about what my life is going to be like and need to talk to someone who’s been there and gotten better. Thanks for reading this!
Niah, the symptoms of ribs, knees, tendons, and extreme stiffness that you mention are all common symptoms of rheumatoid or could possibly be from psoriatic arthritis too. I hope the methotrexate continued to help or that your doc is helping you find something to improve your symptoms.
Hi, Have everything of the same, except that I AM ana positive and that scares me. My doc thinks I contracted it from years of using adrenaline and prednisone for inherited asthma and allergies. So it’s just part of the whole package which is me. I do not have a soft natured husband. Yesterday I could hardly get up – I would call it a systemic attack of RA, i couldn’t face the world and come evening he simply said: So what’s for dinner. And I took my wary bones and cooked him a steak and chips and at that moment was befallen with such anger. He’s not all bad, but he is an athlete and born with perfect genes and sickness irks him. I feel I need to get away from him for a week only just to get better, but being married for 40 years (straight out of school) he is more dependent on me than I am on him. But I could do with some ocean air and a bit of tlc. My body is so in trouble and you’re right, doc’s are not all sympathetic and everything’s a bother. Thanks for great post
I feel like this every day I can’t handle the pain & have thought of ending my life. I’m too depressed to seek anymore help tired of seems doctors
These stories validate how I feel! makes me cry to know that am not crazy! I was diagnosed with RA in 2006 and I have very rare days I feel good.
But noone understands …..its such a fickle disease.
but I deal with it as best I can.
god bless these women! I pray for them to have more good days.
Hi Vicki,
Thanks for your story. I was diagnosed by my rheumatologist w/ sero negative ra this week. It has been a very painful and difficult 6 months. I especially understand how a spouse does not always understand the pain associated w/ Ra.
Thanks for stories and posts. Very helpful. They have reminded me that i should not give up in my belief that i have now acquired something more than sjogrens. Problem here is that ive had sjogrens since age 35. Im now 55 and everything is blamed on sjogrens, which for tnose who dont know can produce multi organ and systemic symptoms. However, ive developed bilateral joint pains that are different now, knees, toes, shoulders, fingers. They are willing to order rf and anti ccp when i ask, so when those just came back negative they say “just” Shogrens.
I was surprised to read here btw about night sweats. Ive been getting drenching sweats after not swearing for years- assumed it was menopause (no evidence of lymphoma).
Hard to explain what happened with shoulders. First one landed me in er, and they said calcific tendonitis. But that was followed with red hot swelling of wrist which had them stumped and a migratory aretritis that lasted over a year. Recently (3 years after other shoukder) i had an trasound of shoulder and something happened that 4 docs so far have insisted iImpossibe- yet it happened. I dont know if was the sonogram itself or the positioning but it lead to excruciating shoulder pain wherw i coukd not move shoukder or go out or get dressed plus swelling, plus then got a fever from it. A few days later my elbow turned bright red and could not bend it. I was told coincidence, to tbe extent they believed me at all. So now am terrified of getting any more ultrasounds of joints- you would not believe how excruciating it was. . You just have to look at me funny a d my immune system seems to react to anything that’s looked at. Also tendonitis for years, hips, anklea, elbow, but assumed it was sjogrens and that part still nay be
I shouldnt get started on doctor obstacles. At this point id be so much better off if i had my own prescription pad and ability to order tests. Its exhausting fighting medical ignorance and blatant stupidity- dont we have enuf to fight?
I dont suppose anyone else had vad reaction to ultrasound? Woukd like to check toes and kbees for RA signs but very reluctant now- tho interestingly poster 2 also did not get diagnosed after those anyway
Very curious to know what those 10 signs are that story teller 2 mentioned.
Ps quick thing on kbees. They both started burning like crazy. Would be too soon to show erosions on xrays. So how can i get evidence this is RA?
VICKY IVE HAD RA SINCE THE AGE OF 23 YRS .LIKE U IVE HAVE HAD PAIN IN MOST OF MY BODY FOR YRS .IM ON EMBREL COULDNT TAKE SOME DRUGS BUT TRIED MOST OVER THE YRS .IVE HAD A TOTAL ELBOW REPLACEMENT .TRIPLE FUSION IN LEFT FOOT AND HAND OPS .WRISTS ,NECK FUSED TO .BUT I CAN UNDERSTAND YOUR PAIN AND BEING MARRIED WITH THIS DISEASE .ITS HARD YOUR SELF EXTEEM GOES .YOUR TIRED ALL THE TIME AND YOUR SEX DRIVE WITH RA IS NIL CAUSE U JUST HAVE NO ENERGY FOR IT .SOME UNDERSTAND MANY DONT MY MARRIAGES ENDED CAUSE OF THE NONE UNDERSTANDING OUR PAINS .ID LIKE TO SAY IT GETS EASIER BUT IF YOURS IS AS BAD AS MINE IT DOESNT BUT YOU COPE AND LIVE WITH IT IN TIME .I HAVE A BRILLIANT DOCTOR AND CONSULTANT BUT KEEP AT IT AND TELL THEM ABOUT YOUR SWEATS .YOU NOW CAN GET MORPHINE PATCHES IF BAD THAT HELP .YOU CONTROL THE DOSAGES YOURSELF ASK ABOUT THEM IF IN TO MUCH PAIN .IVE LEARNED OVER THE YRS SPEAKING OVER LITTLE PAINS HELPS .
So I am seriously considering medical marijuana for the relief of my pain.
It’s been legalized here in the thumb state ( Michigan). And I see no other option as to why not.
I wld not smoke just use edibles.
The crazy side effects of the embrel humira, and other popular big pharma tested drugs .
Frankly scares the beegeebees out of me.
So I did press the office mngr for to see if their office would comply but alas they do not prescribe.
So my friends stay tuned for further updates .
My vocal and silent prayer to Jesus , his Angels Gabriel, Micheal, and Raffeual ?
To continue to help me with this ra struggle !!
Remember always question the answers
Always question authority
Take no crap from ignorant replies, people, corporations, policy’s, etc.
Get to the truth as quickly as possible before they destroy the correct evidence.
Have strong Faith. Stronger Willpower. And never give up. !
Peace and Caution.