Information & encouragement to fight RA
Thank you for this post. I have been having a lovely flare for the past few days and it has reminded me that I need to be more careful. There are days when I do stupid stuff. A lot of times I do things I know I shouldn't do because I am single and I figure no one else will do it for me. However, I do have kids who love to help me. I need to stop being so stubborn and ask for help more often.
I admit that I indeed even more frustrated than when before I went to the doctor. All of my tests for types of arthritis, gout, etc were negative, yet my doctor says that my blood does show some type of inflammation going on.(?) I show all the signs of RA except it is not showing in my blood, therefore my doctor isn’t sure what to think. I just was sent for a mammogram to rule out cancer and the rest of my blood tests are excellent for a woman my age (49). I am currently dealing with inflammation of my shoulder and elbow joints along with muscle weakness. About two years ago I had horrible muscle weakness in my arms where I could not even lift a small pan or jar without excruciating pain. Is there somewhere a comprehensive list of symptoms that I can go through to show this doctor other then the ones I can remember to have had, that I might be having and not paying attention to which could be a better indicator of what is going on? I am frankly tired of the “hit & run” episodes of this disease, which makes it really hard to show a doctor when you are not having an episode of inflammation. What would you suggest? So far , no one is interested in x-rays of my joints but previously no one has ever noticed any damage to them other than my having bouts of tendinitis.
I am sorry this is so hard. I have heard this story before.
I am going to recommend you read an article on the first symptom of RA – there are lots of things people have listed in the comments also. And here is a series on blood tests that are used for RA. And, finally, you might find this post about Palindromic RA helpful, too.
I hope you can find answers soon.
This is the kind of reminder that makes me want to hide away from RA sites like yours, Kelly. After all, there is the old adage that “ignorance is bliss.”
I’ve been having a flare for the last 3-4 days in the joints in my fingers. I know that I caused it by doing too much crochet. And, after reading your post, it sounds like I’d be better off to just give up my crochet now before it does permanent damage.
Except, I love what I’m doing. When everything else hurts and I just want to cry from frustration, I can always pull out my hook and yarn and make something.
People with RA are always in a balancing act, I know. But today the balancing is just making me angry. It’s like a sick Catch-22 where the things that give me strength to get through the worst RA symptoms are also the most damaging in and of themselves. :curse:
Oh NO! Karla, don’t quit!
Ignorance is not bliss at all! We just need to make adjustments. There may be a better way to hold the needle, or sometimes do things in smaller bites (which you’ve already told me you do…), or just give the joints a complete break if they are in flare…
It just depends upon which joint & how badly the particular motion is for it. The balance (as you said) is doing things we need & love to do without injuring ourselves in the long term.
Kelly, Thanks this has been most helpful as I’ve all but quit driving because it’s too hard to turn the key! Today I invest in a larger key and I’ll bubble wrap it as I do most other things. “On the road again…”
Karla, I’m 49 also and it’s really hard at times, you think your life is over but it’s not. I went to a medical supply store and got some gloves that are made of neoprene and go to the tips of my fingers. Because of their thickness they protect my joints when I sew or write, my passions, you can A)Put a sponge curler onto your crochet hooks or B)Wrap them in Bubble Wrap until they are a comfortable size. When I write I always write in longhand w/a pencil first, I wear my gloves and wrist braces and my pencil has either a pink sponge roller or Bubble Wrap on it. What a sight it is to be sure but, at least I’m doing what makes the rest of my pain a little easier not to think of. I hope this helps you continue doing what you enjoy! God’s Blessings!
Hi Alice and Kelly. Im 34 years old and I too know in my heart, soul and body that I have RAD. whether it is Palondromic Ra or reg. Im not sure. One blood work, said positive, but 4 yrs later every test is neg. No one wants to help me. I too have a hobby. Quilting and hand embroidery and drawing. Drawing and writing is very difficult for me. I get maybe 10 mins before my hand starts to cramp, but I have to finish my labels or drawings so I’ll suffer the agony until im through. Any suggestions would be wonderful in helping me continue to do what I like..without pain.??
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What a great and useful article… I’ve had JRA/RA & OA for 47 years and did not know some of this. Thanks, Kelly!
Kelly, I am the Ra’er who aches all the time. Negative ra factor. Swollen knuckles on hands. I am getting used to the aches and just move on.. but yesterday my left and knuckles swelled along with my first finger. I couldn’t type, write or roll down my car window. It was very painful. What do you do when this happens. I being a RA Warrior, am sure I over did things on the weekends. Because after all I look healthy and normal!! I only take methotrexate. I wasn’t due to take my dosage of that for 2 more days. Do you use heat, or ice. How long does it last. ??? So on a small scale, Kelly, I understand your pain a little better…Thanks for letting me have a place to vent!
Dear Stephanie – I’m sorry your finger flared. There’s no way to know for sure if it was caused by your activity or if it would have happened anyway. I do agree if RA is active in a joint, using it can make it worse in my experience. I like heat a lot, but with swelling, many people do ice. Why don’t you try both and see what makes it feel better? I don’t know when you see the rheum doc again, but she should know if you have new joints being affected.
I love how you said, “because after all I look healthy and normal!” Yes, that can be tricky sometimes. 😀
I have had RA since i was 30. i am now 48 and over the last 5-6 years it has gotton really bad….i have had chrotisone shots, which are so far very helpful…recently i had a knucle repacement on my right had and had my finger straightened, and i cannot believe the difference in the way it looks…having a permanent bent finger for 10 years to having a straight finger is remarkable..for the past 2 weeks my right shoulder has been flared up quite badly where i am having problems dressing, i tried to see my ra dr..they told me that the next available appt is feb 8th, wow do they actually care?? since i called and tried to get in for that shoulder, things have gotton worse, my left shoulder and right wrist is also flared up and i can barely sleep. is there anything i can do that might ease the pain till i am able to see someone…to tell u the truth i am really scared to take the ra drugs they have out there, because the the other damage they can do to your kidneys or liver…i am just so lost as to figure out what to do…i am not a pill person. do u have any suggestions
I’ve been out of town all week so I hope that even thoough this is delayed, you’ll see my reply. I understand your fears & most of us have had them. None of us wanted to be a “pill person” and I havent ever had that cortisone shot either. This disease is actually much more to be afraid of though. It is aggressive & there are not always symptoms of what it’s doing to our vital organs so for me, I’ve decided to take the treatments even though it was a hard choice. I’d like to give you a couple of links to some things that I’ve written in case it helps you as you think about it. This is obviously very close to my heart. The RA is damaging our hearts & doctors are looking for a way to extend our lives as well as improve them. click here .
Wow! I have to say that this was an eye opener 4 me. I have always been a bit of an ‘Ignore it yo’ll B fine’ kind of person. I’ve been in pain of one kind or another since childhood. My family never took it seriously, neither did I. I would deliberately ignore the pain as if I had to prove I wasn’t a wuss. Even now that I am more aware, I still feel that I should not ‘give in’ or ‘let IT win’. I have to re-adjust my whole mindset now. My brother-in-law has this saying “Be good and gentle with yourself.” Maybe that is a mantra we should ALL adopt.
Take Care people
Wow. Had RA 12 years. Everything I read on RA Warrior was helpful or sounded so familiar and on target. Thank you so much.
now you’ve done it again. You’ve raised questions in my mind and I have to go figure it all out again by reading and researching. I’m 15 years into diagnosis with Sero negative RA with AS tendencies, and my rheumy tells me my body has not ready his text books. An accurate label would be nice, but getting this progressively worse inflammation and disease activity under control (HAH) would be on top of my christmas list. Keep Asking keep going, you are an icon.
I am establishing a mock joint protection group for the occupational therapy program that I’m attending. Any ideas for activities? I’m going to do a tabletop gardening activity, and a cooking with adaptive equipment activity, any other suggestions?
I had my RA diagnosed in 1995, when I was 31 and struggling to cope with 2 boys under 4! Pain got in the way of enjoying them but once I started on the meds I progressed well with virtually no side effects, lucky me! However, a solicitor’s over-strong handshake 3 years ago caused some serious damage to my right hand, resulting in extreme ulnar deviation over the next 8 months. I eventually had all 4 MCP joints replaced in 2012 and it has been fantastic! However, like other correspondents have said, I’ve tried to avoid further damage by adjusting the way I do things. Plenty of gadgets are available in the kitchen… jar, bottle and can openers, ergonomic knives etc. I carry shopping bags and push supermarket trolleys with my arms instead of my hands, carry cups on a tray instead of by their handles and so on. My thumbs are the next bit to go I guess… but they don’t replace those! I have to look after them more while I still can!
I love this blog… thanks so much to everyone for sharing!
I have been told by 2 reputable doctors that I should be checked for RA. I am just getting well from 3 years untreated LYME. I see an internists Doc. Aug 6 2014.
My question to all, does anyone have a site or wear gloves or splints for the index finger and thumb?
If so please send me the site where I can order. I need to keep my fingers in alignment, for me it also helps the pain.
Thanks and be well,
I am considering foot surgery for my big toe joint. Does anyone have recommendations on how to find the best surgeon in my area? If you had it done, was it successful? I have received different advice from the 2 doctors I saw. One said that cleaning it out would not help as there were not rough areas and that a fusion would greatly limit my mobility. I’m a runner and hiker and will suffer with the pain as long as I can if that is the case.
This is really useful, thank you. I have never been told this stuff (although some of it is kind of instinctive – one joint says no, so use something else!)
I love this tip. My right hand is greatly affected. My wrist thumb and first two fingers have been in a flare up for over 6 months, starting the car and putting on my seatbelt are 2 biggies for me. Right now I use my left arm for everything. I am trying to find other ways to get regular tasks done.
Thanks for the help
Thanks for sharing such great info. Love this sight. Not much info on RA. found on web.
wow oh wow – i have not stopped reading since I found you! I’m nearly 50 and I know I have OA and osteoporosis, and I’ve a sneaking suspicion that I’ve had RA since my early 20s. Hands, then knees (GP unsympathetically said “you have arthritis, you’ll have to get used to it”)
Now it’s in my hips, elbows, shoulders, back, neck… Pain, clicking, crunching… Oh my – I’m not making anything up! Dropping things, pins and needles, burning… Crooked weak pinky fingers, knobbly joints, swollen red knees … Geeez
Someone also mentioned reverse cervical spine curve, got that too among other things.
About 15 years ago I had bloods done – ANA detected speckled titre 80 and RhFactor …
Still not referred to a rheumatologist
Anyone in Canberra Australia I should see lol???!?!
oops – got over excited!
I meant to add that I put rubber bands (the wide ones) on small lids to bulk them up, hold them close to my body and open with palms – but only works if not too tight or I’m not in too much pain. Also, spoons and knives open many lids (like coffee jars)
And the rubberised mats that are for caravans and boats (to stop things sliding) are great for stabilising things – bowls for mixing, taps, jars … Especially those that aren’t too tight but I’m worried that my poor grip will let slip.
Plus, I try not to hold things over a “long dropv now a days lol
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Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.