Bringing information & encouragement to fight RA
Do you think stress and lack of sleep make RA worse?
I think RA that is already present seems to be more painful for many people when they add stress. Personally, I have noticed no difference in disease activity at any time, so that’s not true for everyone.
And I think rest & sleep are the best treatments for RA besides medicine. RA symptoms seem to improve with adequate rest in most patients.
Those are just my opinions, but I hope that helps.
For me, I get myself in a vicious circle of no-sleep, then feel worse. But when I can’t sleep, I get particularily cranky, sad, dwell on it, and focus on how bad it is. Other nights when my boyfriend gets up with me and we watch TV or something, I simply just feel tired but physically not any worse. I’m sure it’s different for each person but I know mentally I convince myself that I feel horrible when I’m alone & can’t sleep.
My experience of how my RA developed was very different than most peoples here; at least in terms of getting diagnosed.
I was on vacation last July, 2010 and had been white water rafting & hiking in the mountains in Utah. I woke up and my finger was sore & stiff. I assumed I hurt it the prior day. The next day a couple more fingers were stiff & tight. (for a couple hours) I assumed it may be the 110 degree heat, or salty junk food we had been eating. The next day all my fingers were puffy & tight. (for a few hours) I then assumed it had to be swelling from heat & elevation changes and that it would go away once I got back home. Didn’t happen. It continued a couple months and after reading only a few articles on the internet I pretty much knew what I had. It was limited to my hands then, classic morning stiffness that went away, only to return after periods of inactivity. I went to my Dr. in November 2010 and told him I thought I had RA. He ran labs to confirm & sent me to my rheumy in January 2011. Now only 7 months after my first symptom, I feel it in nearly every finger joint, both wrists, both elbows, & both ankles. The fingers give me the most problems, but the ankle is the most painful.
I have the same feet sad to say. It all just happened over night i could not believe how fast RA got me down. I was someone that would work all day and come home and stay active outside. I would run a weedeater for 3 and 4 hours at a time. I loved just working. Now i really gotta watch what i do, or i pay for it the next day. If i stay in one spot or just sitting down for a little bit it just kills me. The more active i am the beter off i am. But i cant stay active constantly. My feet feel like someone stabbing a knife in them or sharp pain and when i dont have the pain its always tingling and soreness. I know how your feet fell i believe !!!!
By the time i figured out what was going on my ccp antibody was 216 and my RA FACTOR WAS 84
My first symptom was my hands, however, I was a smoker at the time and I always had horseness, once on RA meds the horseness went away and has not come back. I only stopped smoking 2 months ago and have been diagnosed with RA for 2 years. The next symptom was my feet!
Mine started so long ago and was misdiagnosed for so long its hard to tell. I worked a job with my hands they said carpule tunnel syndrome. My shoulders they said tendonitis. My back they said injury, (also found out i have congenital spinal stenosis) my feet and toes only after pregnancy started to hurt and swell. I had a huge hump on the back of my neck no one has been able to explain away. with dire pain and swelling often. My hips were the first obvious joint and my worst still. they said sciatica and i was too fat. im still fat and all the above joints plus take turns on hurting and swelling.. elbows knees you name it. when will it end…..
My first symptoms as a child were in my fingers and wrists. As I got older it moved to my toes and feet. Just before I was finally diagnosed at 13 it was in my elbows limiting my range of motion. I presented mirrored symptoms on the right and left.
Feet first, followed shortly by my knees, wrists and hands.
Hi, My first symptoms was a problem with a painful left shoulder.It was put down to strain from work and from breastfeeding my 15motnh old. Then my feet would kill me after work(nursing) that feeling of a rock in your shoe or several rocks. This was over a few months,then the hands started.If i went to sleep with my hands open I couldn’t close them when I woke up and if I went to sleep with them closed I couldn’t open them.On top of this I was becomng more and more exhausted. Finally a had a huge flare up involving every joint and the Dr realised it wasn’t the normal stresses of having 3 kids and a job.
If you had asked me this 10 years ago I would have said Knees but I have spent the last 10 years asking questions and I now think that it started in my left ankle at age 16 then moved to my lungs the same year having had several bouts of pleurisy over the years. At age 18 it went to my knees after my son was born at which time I was diagnosed with RA. My right wrist and elbow a few years later when my daughter was born when the doc I had then told me I had “traveling RA”. At age 40 when I had swollen fingers, and ankles, painful shoulders and hips my family doc told me that I was too young for RA the 3 previous Doctors did not know what they were talking about diagnostics have changed over the years blah blah blah but if it makes you happy I will order some blood work. It came back negative and he told me I was entering early menopause which was the source of my pain etc. Finally found a GP that took hand xrays told me what by then I already knew and sent me to a rheumatologist who listened to me ran absolutely no tests just said if it walks like a duck it is RA and started me on treatment. He then retired Now at age 56 I have a good Doc who seems to be on top of things but because of the ignorance of so many doctors over the years I am now on permanent disability. Sorry it is so long I guess I am venting a little so back to original question it started in my left Ankle
Funnily, my first symptom was acute fatigue! Then, I noticed that my keyboard skills were falling and I was experiencing stiffness throughout my body (not simply in my hands). Fortunately for me, my GP (Primary Physician) had a keen interest in RA and, on hearing about my symptoms), I was referred to one of the UK’s leading Rheumatology Consultants. My first consult and examination led to the diagnosis. It is unfortunate (to say the least) that so few Primary Physician are aware of RA and that so many people suffer for too long before they get the medications needed to stabilise them. I do consider myself to be lucky in that I had an early diagnosis. Now, I take part in the education of medical students to help better prepare them for practi
Well, I have been in pain for 8+ years. Neck, shoulders, upper back, one finger. I am 46 years old and I exercise regularly. I tested postive for the Rheumatoid factor..not sure about the others. Also tested positive for the Ankylosing Spondylitis gene. My x-rays 3 years ago showed nothing in the spine so my rheumy did not diagnose me with RA. I am on celebrex..it is helping me some. I get depressed because I do all the right things…exercise, stay a healthy weight, keep going so noone knows the pain I have. Any thoughts???
My first sympton of RA was in my hands, my fingers were painfull and i didnt know why and also numb a lot of the time – when i first went doctors she told me i had carpul tunnell – it wasnt for about 2 weeks after that i had severe pain in my knees and went back that she done a blood test, x
Yes. My feet were also the first symptom of RA. I had had plantar fascitis that didn’t seem to heal. Went to the foot doctor and he told me that there was something systemic going on. Then went to a rheumatologist.
My symptoms were difficulty walking after resting for a brief period with bearable pain after I was upright.
Of course it has now traveled to my hands and fingers. None of my fingers are straight, with a bout of trigger finger in my ring finger which required ultrasound and therapy to get it working again. The toes on my feet have lost all flexibility and appear clenched and are impossible to straighten.
Mine started one day with every joint in my body swelling to the point that I could not move them, within hours I was not even able to turn over in bed, was hospitilized, my doctor thought I had Rheumatic Fever, took 6 years for me to get a diagnosis with me telling them I had RA, it hit me just like it did my brother at 42, same symptoms, everything! Mine was triggered by Fifth’s Disease!I was literally working one morning and in the hospital unable to move that afternoon. That is my story of how it started with me! Strange disease this RA, picks and chooses how it starts and effects its victims :pain:
My first niggling that something was wrong was during a walk I had taken while I was pregnant with my daughter. I was about 8 months pregnant and my left knee was killing me, I had never before experienced that level of discomfort in my body. I had no idea why. That passed, and two weeks after she was born, hell broke loose in my body.
It started in my hands and literally over night my shoulders and then my hips. The pain was so incredible that I was taking 14 Morton pills a day until I could see my primary doctor a week later.
First indication that something was wrong was in my feet. Then it felt like the worse case of the flu known to man-I hurt all over. I felt like if I moved a joint it would break.
Looking back my RA probably started in my shoulders 30 years ago in college. Couldn’t lift them up to wash my hair, went to the doc and they said it was from my backpack.
Fast forward to 2000, my knees were stiff and sore, but I was heavy aand climbing up and down bleacher seats several times a week. After a day of ice and advil they;d be better.
@003 had a hyst with complications…ended back in hospital on massive antibiotics for a pelvic abcess and my wound That was February. By June I still felt like crap, tired, low grade temp at night, all attributed to my surgery.
Sept 2003 my left knee put on a spectacular flare..ended up in the ER where I found out I had RA. Took Bexxtra for a few nonths with good relief until my b/p shot up.
Next was methotrexate8 tablets a week.Have to stay home the next day after mtx, the bathroom becomes my best friend.
On a routine basis my hands and toes hurt the most.
My first symptoms were definitely in my right shoulder and then my left, followed by numerous joints within a month.
Feet and hands started at about the same time. When getting out of bed in the morning, would have to take time for my feet to be able to bear my weight and for my hands to move at all. Took awhile to be able to take a few steps!
I’ve had pain in my knees for years (since high school, 12 yrs ago) that was made almost unbearable every time I ate mashed potatoes, so I just avoided potatoes and never thought to investigate further.
Cut to the last year when I started seeing swelling and bumps forming on my finger joints that quickly turned into an inability to hold a pen or toothbrush without using both hands. That’s when I finally went to a doctor and was diagnosed with RA.
I have had RA for about 30 years. (I’ll be 34 in a few months)It started in my ankles, but didn’t get ‘serious’ till it was also in my knees. Through the years it just kept claiming more.
I think this conversation can be used as a good reminder to each of us that our experiences are very likely to hold more information than even the most knowledgeable professionals, and that we should always honor our inner truths, even when the ‘research’ contradicts.
Breath Deep Sisters. It hurts, but you can’t kill the spirit. In fact it gets tougher in the forge of RA, and under the anvil of chronic pain. Breath deep, and thank you for sharing your experiences
YIkes I typed that so wrong, i’ll be 43! in a few months.
My first symptoms, looking back before I was diagnosed with RA, were back in 1989 when I was a freshman in HS. I had a period at that time, my feet would hurt so bad I would sit in the library at lunch and take my shoes off. Years passed before I had symptoms that didn’t go away. In 1995 it started in my feet again. I was to scared to go to the Dr. to find out what was going on. It lasted about a month this time. Then in 1996, there was NO ignoring it any longer. I got to the point where I had to hold onto things when I got out of bed just so I could walk. This time it quickly started affecting my hands and wrists also. When I could hardly use the potty myself because of my hands and wrists, I called a Dr.!! In late 1996 I found out I had RA. I would like to send a huge thank you. THANK YOU! for giving us a place to come and share with people who understand what we are going through day to day.
and Thank you, Aletha.
Mine started in my right wrist. For months I had a swollen sore wrist that I could not use at all. Went to ortho who was unable to make any diagnosis even after a bone biopsy and synovectomy because my RA bloodwork came back normal! He finally suggested politely that I might have Gonorrhea!!!! Have had four synovectomies since. Symptoms continued- lots of pluerisy, weight loss, more joints involved. Still no diagnosis- another GP suggested that I just had cabin fever… Finally got a referral to Rheumie who bent my knees and told me I was fine. A few years ago I found another Dr and was finally diagnosed. My RA factor was thru the roof. This took place over the course of 25 years. So i guess the moral of the story is “Don’t give up”.
You are so right – thank you for putting your story here!
l was 29,just had my 2nd son.literally overnight,my life changed forever.l woke up and couldnt walk.my left knee was swollen to breaking point.very red and hot.l was tested for gout,then a few days later the other knee did the same.3 months later my doctor diagnosed RA.the disease runs on my mothers side.
I had very bad sciatica in 2003, which finally required an operation to reduce the pressure on the nerve by removing parts of two vertebrae. I think this operation is what triggered RA.
Thus [spinal] sciatica may be the first sign of my RA, next sign was intense pain in right hand, and swelling of knuckles. Then Polymyalgia rheumatica twice, before finally July 2010, I developing swelling in ankles and hands; pain in many joints such as hips, ankles, feet, shoulders and both hands; and severe fatigue. Finally formal diagnosis of RA [and OA] in November 2010.
I think it started at my feet, but its hard to say. I remember getting cramps in my toes and having them curl up. When I had my first kiddo, I had to have cortosone shots in my right wrist from overuse. Then my shoulder started hurting, my hip would lock up if I was reading on the couch and tried to stand up. I would be walking around like a limping cowboy! Then I needed shots in my heel and ankle (no one ever said arthritis, but the x-rays would say “arthritic changes.”) Then cortosone shots in my shoulder.
I had my second baby and while I was preggers I would hide my hand under the pillow where it was warmest to ease the pain. And at the end of that pregnancy my pubis symphis would click (the joint in the center of the hips). When I had him I couldn’t lean against the counter without horrible pain. Then at the end of my schooling two years later TMJ appeared with a vengenece, my jaw would get stiff and I would (still do) have to open it to crack it and make it feel better. My wrists started getting stiff and cracking. My knuckles would too. My knees, my ankles followed. My DO sent me to a nice but spacy rheumy who just didn’t help at ALL. Frustration, then went on with my busy life!
My neck a year and a half ago would crack as I turned it and realized couldn’t turn it all the way to the right anymore. I had a bad bought of asthma and got lots and lots of steroids and mentioned to my pulmonologist how much better my joints felt (I just noticed, did not realize how much they hurt!). He said that a lot of people feel that way after a lot of steriods, so I brushed it off.
Then last December every joint went to town. I thought I was crazy! My wrists hurt! My knuckles were red. I couldn’t type for more than a few minutes. I couldn’t put my elbows on the arm rests. I couldn’t sit for more than a few minutes. I was a pain in the butt and my family thought I was nuts! My very caring DO sent me to a rheumy and he finally after more cortosone shots in the hand and a thorough check up he diagnosed me (seronegative). Vidication! (And not quite a year later after diagnosis) Whew!
Thanks for putting your story here, Beth. These long diagnosis stories are so common & I hope that our stories will change that!
I also was first struck in my feet. It was my 12th birthday and I was convinced that I had broken toes. The pain was very allrming. My mom, a nurse did an inspection-no brocken toes, and dismissed it. A couple of years later I had a huge swelling in a joint of my finger that could not be ingnored. Oh and the “low threshold for pain with RA suffers” opinion of many doctors…well I have a very high threshold for pain. I have had 3 eardrum bursts with no pain medication. I am grateful for my high threshold of pain-that is how I get through the day to day…but concerned about the doctors pain scale 1-10. Just because I am not interested going to the emegency room, not in tears, I I am walking, doesn’t mean my pain needs to be ignored.
Elizabeth, that was very well said. Thank you for your comments – I may quote you one day when speaking to doctors!
i would wake every morning and the soles of my feet were sore but it would go as the day went on , after awhile they stayd sore and a couple of fingers swelled up, my gp did a blood test and it came back my ra level was high as then it was all on , been a mess ever since
Thanks for posting, Kim.
I am very lucky. My first symptom was a high SED rate and some slightly achy knees. My PCP was testing for something else and was determined to find out what was causing the inflammation. I had one bad episode that coincided with heavy deadlines at work and a new exercise program that left me crawling up the stairs for a few days. But when I was put on medication and diagnosed (without positive bloodwork) I was in relatively little pain. My Rheumy gave me a weeks worth of prednisone first to see if I would respond and I realized that I had been achy all over, it just had snuck up on me. I remember thinking, “oh, my feet don’t hurt anymore” and then, “wait, my feet don’t hurt”. Now everything hurts, and I look back at the “growing pains” that I had as a kid that felt like the worst my knees have been, and all the times as a teenager that my jaw locked shut in my sleep with a little more suspicion. Oh well, I have great doctors who listen and take great care of me, and we’ve finally found a drug combination that works, just as soon as I recover from the latest tinkering. The last month has definately made me feel great sympathy for anyone that suffers from RA who does not have both of those.
I am new to this site. My first symptom was 15 years ago in my 20’s my shoulders. The pain was excruciating. I couldn’t lift my arms in the morning. I thought I slept wrong but this persisted and came and went. The pain was too debilitating to be from sleep position. Couldn’t get a diagnosis. Last year my finger knuckles began swelling and I have trouble using my hands. Now it is affecting my toes. I am just now getting a diagnosis after a positive rheumatoid factor test and visible swelling.
Hi Elizabeth. I hope you read this – I’m a day or 2 behind. I hate to say that your story sounds “typical.” But I’m glad you are getting treated now. Welcome to the site.
I have been diagnosed with RA a couple if months ago.
All of this summer i had aches and pains in my feet knees back and hips then my elbow and one of my fingers and i was also very tired and would sleep all afternoon at least 2 hours. I went to my dr and he gave me some blood work to do and he sent me to a reumy. I was diagnosed with RA, i was given more blood work and i’ve been given Plaquenil i also take dicloreum for the pain.
Before i start the plaquenil i have to have an eye test, in the mean while i have been to an accupunturist and he’s said go back after xmas and start accupuncture and homeopathic treatment i wondered if any one is doing this kind of treatment instead of traditional medicine? And if they are having any relief. I just can’t seem accept all this at the mo!:-(
Good luck with your new treatment. It is a lot to accept. I understand.
I don’t know if you’ve found it, but there are some posts here on natural treatment. They can be found with the Tags list at the top of the page. Click here to see one of them.
I had jaw pain, two years after being severely ill with what my doctor described as ‘a blood disorder’. I was 12 at the time, 14 or 15 when that Jaw ache arrived. I was not diagnosed until I was 33. At the time neither my doctor, dentist, chiropractor or naturapath could figure out why I had this sore jaw and I was unable to eat properly for months. eventually it subsided.
My rheumatologist later explained that I probably contracted Juvenile RA from a virus, hence the ‘blood disorder’ in 1975. The sore jaw was a dead give away, he claimed that many juvenile RA patients had that symptom first!
My first symptoms were hands and feet. I was very suprised to see that you described the feeling you had with your feet as “standing on rocks”. I have recently described the feeling as “walking on rocks”. I am 43 and have not been diagnosed ye, I have an appt in two weeks with a rheum. but I already know I am feeling very ill (flu-like) the past few days and it seems to get worse after I exert myself.
Wendy, I hope your appointment goes well and the doc listens carefully. Good luck. Have you read the Do I Have RA page on the menu?
My fist symptoms of RA was after the birth of my daughter. It started with Raynauds. One finger started to turn completely white and over a few months it progressed to other digits until it was all ten. Followed by wrist pain. Pain so unbearable that I couldn’t hold my daughter. From there it went to thumbs and the rest of the joints in my hands. It took the doctors several months almost a year to diagnose me. I had several docs tell me it was a “manifestation of my imagination!” YES, I was mortified! Until I found one doctor who would actually listen!
*SIGH* sorry you heard that too, Tracy. Too common. Hopefully will change in our lifetimes!
I have complain for years about my feet and the pain. So far my blood work is negitative for RA. Dr’s have told me I am making it up. But reading your artickle has made me even more aware about RA. My big toe on my right foot is laying over the next toe. And I walk on the side of my left foot. I have bbraces to help me walk. My left hand you can see that the first 2 fingers have turned. I was in a car accident 14 yrs ago and do have back pain but now I wounder if the pain I had at the accident was my RA acting up? So far I cannot find a Dr that will tell me I have Ra. I live in the North Cailf and if any one knows where I can go for help I would like to know.
Elizabeth, please don’t give up. I know it’s hard. I don’t know of a dr in your area, but I’d contact the American College of Rheumatology and ask for a member practicing in your area.
My first symptom was in my “pointer” finger on my left hand. For about two years it would turn black & swell. I would laugh & say oh this again??? By the time I’d think about going to my doctor it would be better. I did tell him once to no avail. Then one evening I was watching TV and my knee became so painful I described it as this: “I thought I was having a heart attack in my knee”! Horrible, I went to my family doctor, he took one look at my face and sent me for blood work. I knew that meant something weird was up as he didn’t send me for an xray. I still have a swollen knee, but the pain comes and goes. I also have a deformed pointer now. Most days I am able to laugh about it but the worse thing for me is the fatigue. Whew, that gets bad some days. I just drop like a fly!!! ;-)”
Several months ago practically overnight every joint in my fingers became extremely stiff and painful. Over the next few days the pain and stiffness spread to other joints. I went to my GP and he did blood work and has assured that I do not have RA. I’ve been back twice and still no answers. The pain in the other joints has lessened but my fingers are worse than ever – epecially in my pinkies. Every morning when I first get up it is complete misery. I only wish that I knew who can figure out what is wrong. I spend 90% of my day at work on a computer and I’ve become very clumsy at keying because of the stiffness. Ideas?
Susan, you might want to read through the info and links on the Do I Have RA? Page – link on the menu. I know its hard, but a 2nd or 3rd opinion is often needed. Don’t give up. A good doctor will listen and diagnose better because of that.
My first symptoms of RA were in my knees, but it was not diagnosed.
Wow. I just happened to stumble upon this website when logging into my aol account today. This is exactly what I needed. I have been suffering with symptoms for the past two and half years now. I still cannot get an accurate diagnosis by a medical doctor. I have all of the typical symptoms, but the blood work has been comming back negative or inconsistent–this is why I have not been diagnosed. I have seen many an aweful doctor–you know, the ones that can’t look you in the eye or let you speak without cutting you off. I am currently in an intensive doctoral program for psychology, and I just don’t have to the time to keep seeing different doctors, getting more blood work–I just keep trying to carry on, I guess, like many of us do until we can get an accurate diagnosis and care.
Knowing that others have had as much, if not more, difficulty as I have had in attemtping to get good treatment and care gives some comfort, in an odd way–just to know that I am not alone. I have a very supportive family and long time fiance that keep me going and offers so much support. It’s so frustrating living with this pain and trying to keep up my busy schedule. Some days it just gets the better of me. I am so tired of searching for good care, it just feels like a waste of time that I don’t have. And now, I am afraid I cannot afford very good insurance. I use to get it through my fiance’s company. However, with layoffs, we no longer have that luxury. So, even if I could find a good doctor now, I don’t know that I could afford it.
The symptoms for me are frequent swelling, in my feet, hands, and eyes. I have always had back pain, since I was a child. I have incredible ankle, knee, and hip pain, as well as pain and stiffness in my hands. I am a student, and so this stiffness in my hands interferes with my ability to write notes in class, or take written exams. I cannot stand or sit for too long, without incredible pain and stiffness. Each morning, and often into the afternoon, I have stiffness–sometimes I cannot walk. Most recently, the knee pain has been getting worse, each night I wake up periodically because my knee feels like it is being twisted. The pain is very intense. Now, even if I sit or lay down this pain arises. I must constantly shift position to ease the pain in my knees and hips. Ny ankles have also weakened over the years. I use to be an athlete, and I have always been heavily into exercise and eating healthy. I believe the healthy dieat and the exercise has been what has kept me going. However, my “exercise” is not what it use to be. I use to be able to work out 5-6 days a week for 1-2 hours–intense. Now, I am lucky if my body allows me to get out for a short walk. I know I have to do it, however, whenever my body will allow. Staying immobile will only makes things worse, and being immobile often does not feel any better than walking anyway. If I am going to have pain either way, then I may as well take the active route.
Anyway, thank you for allowing me a medium to vent some of these thoughts and feelings. I think that this support line is just great. I look forward to finding some good resources while searching around this site! Thank you.
what makes people like that even become doctors? I don’t understand it. Anyway, if you are still looking for a diagnosis, you might want to read the Do I Have RA? Page on the menu. It has some other links there too. Also be sure to read the Blood tests part 2 from 2009 – There are so many patients with negative blood tests that it’s not a reliable way to diagnose. It is only one factor. If it is RA, then it continues to attack even with your healthy behaviors so I hope you find answers soon! good luck w/ your phD.
I am still trying to figure out if I have RA , I just turned 34 and in the past year or so I have been having some real issues with my wrists and hands .It started with my wrists , when I would squeeze a sponge I would get a sharp pain in my wrist. I thought it was from my job , I did put a lot of stress on my hands and wrists, it started to get worst. and for a couple weeks I couldn’t do much I still went to work but it got so bad , I thought it might be carpeltunnel so I went and bought to wrist guard/splints made for carpel tunnel. After time it started to get better, then I noticed my hands started to bother me , when I would wake up in the morning my hands were asleep and would feel like pins & needles, it got worse and progressed I would wake and I couldn’t feel my hands I when i would try to brush my teeth or tie my shoe’s ,I could barely use my asthma inhaler , it took everything I had to use my inhaler it felt like a tendon was being ripped out of my hand , like an elastic band being stretched out. My hands also would feel like they were swollen . The pain would go away about 30 min after waking up . I went to my Dr multiple times and I could never get any straight anserw’s . after a few visits he finally had me get a blood test for RA , it came back negative , a couple weeks later I went back to him I still was having pain , he gave me a steroid called prednisone he told me to call him if that didn’t help me and he would send me to a reumatoligist . After i took the medication i was still having some effects but the became less and less and I havn’t gone back to see my Dr . At the moment I am not in pain like I was but I would like to figure if I have RA or not. Do my symptoms seem like RA symptoms ? Any advice would be greatly appreciated. I am glad I found this web site , Thank you !
Billy, I recommend you read through the page on the menu called Do I Have RA? If I were you, I might go back and ask for a rheumatology evaluation since that sounds suspicious. There is not a blood test to actually diagnose RA yet – the tests are only part of a diagnosis since they don’t have a perfect test yet. Many patients with RA have normal test results. Hopefully one day there will be better tests as scientists learn more about what RA is and how it works. Good luck to you!!
My first symptom was my feet. I was pregnant and figured that was the problem but then my baby was born but the foot pain did not go away. It took 3 years after my pregnancy for the diagnosis to be made. For 3 years I was told oh it’s probably plantar fasciitis. I just couldn’t believe that you could have plantar fasciitis every day for 3 years. I was finally given the blood tests for RA and the diagnosis was made. I also had/have joint pain in my fingers and neck pain.
Mine did begin in my wrist I pulled a few weeds in the yard one day and about 6 hours later my left wrist swelled up and the pain was unbelieveable I went to the emergency room because I didn’t know what it was, the doctor there didn’t know either, he gave me a anti inflamatory shot and in 15 minutes the swelling and pain was gone. It was until a few years later that I began experiencing more and more of these symtoms in my wrist,fingers,and hips before I was diagnosed and now my ankles,after sleeping or sitting for any period I cannot walk very well until I shuffle around for 5 or 10 minutes. I am on medication which works 50% of the time, I am worried about using strong drugs as injectables for fear of the side effects.
I hear you – the RA shuffle!
I had little black spots on my toes that burned like fire for hours at a time. For 3 sets of flares the doctor thought I had a fungal infection. Turned out it was vasculitis.
I was formally diagnosed with RA 11 years ago this very month after 3 years of joint pain which began with my left knee. It hurt terribly and over a few days, swelled up, and turned red. Over this past decade I have dealt with RA working w/my rheumatologist and now my nurse practitioner. In Nov. I had a horrible flare that was soothed by a burst of steroids, Medrol dose pack, then I went to 5 mg of prednisone for a couple of months. While I was on Medrol and for weeks afterward, I had NO pain at all. It was amazing and wonderful and I thought, “Hey, the RA is gone!” I was told to wean off the prednisone and I’ve done that only to have that pain recur. It’s in my knees and ankles. Because I have low density bones, they don’t want me on the pred, but it is the ONLY med that truly removes all that pain. Does anyone else need to stay on low-dose pred to be able to live relatively pain-free?
Ruthe, the short answer is yes. There are many patients who have to stay on prednisone in order to function. You can read throught the posts on pred and the comments pages using the tag Prednisone and RA. I’ll look it up for you on the tags list and put the link here- click here.
Your experience is typical & there was a very large study last year showing most of us are in pain every day. You can read about it here.
Have you seen a podiatrist? I had petulance made specifically for my feet. Make sure to have the doctor submit it for insurance coverage with the words “medically necessary.”. Fight if if your insurance rejects the claim. I threatened to appeal and get a ruling that would affect all aeprthritis patients in the state. I gove coverage, despite a specific exclusion in my policy:)
Sorry. That was for the later post on foot pain. As for prednisone, I have been taking it for twenty years–10-15 mg a day. It does work.
I have had RA for 6 years. My first symptoms were related to my feet and my feet are still affected. I take a maintenance dose of steroids 2.5mg daily. I’m not pain free but I’m not crippled with pain either.
I was wondering what RA’s that cannot tolerate NSAIDS are taking to help their pain. I’m also wondering doses. I am wanting to know any other techniques used that have helped manage pain non medicinally. I am also curious about the foot pain…is it affecting the achilles-how does the foot pain present. Please, any information you could give would be so appreciated.
Theresa-Besides my rheum I see a pain mgmt doc every month. He prescribes meds for me. Thank God!
I’ve used a topical cream that works well on my feet. It’s called Topricin, I use the regular but, I think there’s one for Arthritis.
Is the Voltaren gel a Rx? Never heard of it
Regarding your feet… Get some ‘memory foam’ slippers for around the house at least. They are a real blessing! Hope the come out with insoles.
Also, go to a shoe store that custom makes insoles, you may want them (need a Rx from an orthopedic dr) , but they carry shoes with soft stretchy tops instead of leather. (meant for diabetics)
Hope you find relief
I just ha one ankle fused. It was hell. NO PAIN NOW
I’m so sorry you are in so much pain. If you cannot tolerate the NSAIDS because of stomach upset there is a gel called Voltaren – it’s expensive and by prescription but it has the anti-inflammatory in the cream. I use it(I have AS) and so does my mom (she has RA) I’ve put it directly on whatever joint needs it at the time and it does help. My achilles had given me trouble since I was a teenager. Also – look for shoes that don’t hit at the back of the heel – some sneakers have the cradle and mules are good. Check on Dansko shoes – my favorite. I also take a lot of supplements and they help too. I look to do every little thing that might help because if you do it all – it adds up.
Please take good care of yourself.
Unfortunatly for a lot of us this is a tough ?? I had many symptoms b/f being diagnosed. I “think” it was fatigue, I seriously believed I was just lazy or depressed. Then one night I had what I call a “knee” attack. Went to my doc, he sent me for blood work…6 drugs later here I am! Ouch, head to toe, worst is hands.
I second the Voltaren gel. There is also non Rx gels like Biofreeze, capsaicin (which burns, so you have to be careful about not getting it near eyes and such – some people like it, I just got some, haven’t tried it yet). Comfy shoes a must. There are so many out there. I’d go to a good quality shoe store (not a chain store) and have them measure you, and talk with them about which parts hurt and when. I have bought SAS shoes and they are by the far the most comfortable for me!! (Ugly, but comfy, I wasn’t going for pretty). Also I have been living in fur lined Crocs since the cold weather hit, and they are super comfy.
I have a good pair of running sneakers I bought last year, that have a lot of cushioning – Asics Gel Kayanoss. I also wear those to work.
Or go to a podiatrist and see if you need custom orthotics, let him/her look at your feet, just in case…
I have had some results from the Australian product called “Blue Emu” I found it in Walmart about $11.00. You rub it over the joint area. I used it on my hands. If you are not seeing an RA Doc on a regular basis I recommend that you start. I have had it 15 yrs and am now on Rituxan with good results. However the less invasive med you can use or product the better. Warm parafin dips and definately exercise which after a while you are able to move better. Just keep doing even if it is just walking on grass cause it is softer is good. I also found that Sugars/carbs triggered or exacerbated my aches. Good Luck. L.
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