My poor fingers: I use to have such lovely slender... - NRAS

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My poor fingers

Summerrain14 profile image
38 Replies

I use to have such lovely slender fingers until having RD. Over the last two days I have found that another two of my finger joints are becoming deformed. Is this usual for RD? I am waiting to hear back from rheum nurse as been having a flare up for at least a month despite meds for my RD. I only spoke with her on Wednesday and she is going to speak to my consultant. My consultant is part time though so today would have been the first day she may have had that opportunity or not as we know how busy the clinics are. It has only been since yesterday that two more of my fingers have developed this swelling. How long should I wait before ringing the rheum nurse to say that my symptoms are changing daily? Don’t want to be pushy but so don’t want more permanent joint damage either. I have no email contact so can’t send photos of what is happening. Any advice about contacting my rheumy nurse?

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Summerrain14 profile image
Summerrain14
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38 Replies
sylvi profile image
sylvi

Join the club darling mine fingers were so very slender I wore a N on my wedding finger and I had rings on all my fingers. Now I have none. Hugs from me. xx

Summerrain14 profile image
Summerrain14 in reply to sylvi

It is so horrid isn’t it Sylvi. Being part of this club really has it’s downside. On the upside I am in touch with lovely people like yourself who so understand. x

sylvi profile image
sylvi in reply to Summerrain14

Oh we understand darling so much too. Hugs. xxxx

in reply to sylvi

I used to wear a 'k'. Now I wear size 'L' 😠

Nocciola profile image
Nocciola

In my case, when the disease was active, I had symptoms of swelling. The rheumatologist addressed my symptoms with an ultrasound, to see if there was active synovitis, a steroid shot, to calm the inflammation, and a change in medication - in my case, she added Enbrel to the methotrexate. When the disease is controlled, as it appears to be now, I have no swelling.

Summerrain14 profile image
Summerrain14 in reply to Nocciola

I had a steroid injection two weeks ago from my rheum nurse. It has helped a bit but not as much as usual. It has been mentioned that my meds may need reviewing. Think I need to contact my team again on Monday as the disease is clearly still pretty active on current regime. It will be great if this swelling does go back down again and no permanent damage is being done. I’ll try to speak to the rheum team on Monday. Thanks for responding to my post.

So pleased that your disease is currently controlled. Long may it continue.

xxspoonerxx82 profile image
xxspoonerxx82 in reply to Nocciola

I got put on steroids about 4 years ago an I was on them for 3 months an put on over 3 stone witch didn't help with my depression and anxiety so I stopped taking them. I've been on methotrexate now for 7 weeks and I haven't had any swelling of my joints since but the side effects are horrible! I constantly feel tired and withdrawn I get hot flushes an the other week my mouth and face felt like it was on fire.

Lolabridge profile image
Lolabridge

It would seem your meds are not working adequately to prevent damage. So I suggest you call her on Monday and ask if she’s managed to talk to consultant as you have deteriorated further since you last spoke to her and you are worried about long term damage.

I had to stop wearing any rings many months ago due to swollen fingers but now my drugs are working well the swelling has reduced. I hope yours will too.

Summerrain14 profile image
Summerrain14 in reply to Lolabridge

Thanks Lolabridge. Will ring on Monday.

Me too my hands were very elegant now a string of sausages. Had my wedding and engagement rings cut off on my 30th wedding anniversary 🥺still not wearing them

springcross profile image
springcross in reply to

I like sausages 😁 x

Summerrain14 profile image
Summerrain14 in reply to springcross

😂. Me too but not for my fingers to resemble them. 😂 x

Summerrain14 profile image
Summerrain14 in reply to

Can’t like this post as that must have been so hard to have to have done both physically and emotionally. I have removed my rings too. ☹️

in reply to Summerrain14

Told hubby he would have to buy new rings as my diamond 💎 looked big on my pre RA fingers but lost among the sausages.... cheeky bugger replied there ain’t a diamond that big 😂😂 but yeah broke my heart 💔

Summerrain14 profile image
Summerrain14 in reply to

😂😂. Your hubby sounds one in a million. Having the support of our loved ones is so important. Having someone who loves us is priceless ❤️

in reply to Summerrain14

Yeah he’s a keeper... sense of humour is what captured my heart

Summerrain14 profile image
Summerrain14 in reply to

A sense of humour is a fab quality. My bestie can make me smile on one of my darkest days. Best medicine ever.

springcross profile image
springcross in reply to Summerrain14

I removed my rings before diagnosis (just in time thank goodness) as my fingers and hands were swelling so badly you couldn't see a knuckle or joint anywhere. It was a little difficult and quite uncomfortable but I got there eventually. I really never thought that I'd be able to wear them again but I did eventually, how long for though only time will tell.

AgedCrone profile image
AgedCrone

It’s possibly OA joining the party.... the top joint on my middle finger is turning sideways at right angles to the finger.....even rheumy said he hadn’t seen that before & said it was most likely OA.

Mmrr profile image
Mmrr

10 sausages here too . I used to have piano fingers ( but didn't play the piano!). I would give the nurse the week from your call to get back to you before chasing her up.

Everyman profile image
Everyman

This post has helped me this morning. My fingers are so sore. I can’t move them first thing and yes my rings are a challenge.

I’m just glad my knees are not swollen I ignore my hands but maybe my biologic is struggling.

If it fixes my large joints but not my hands, I’m not sure I would risk changing - any thoughts? Also on methotrexate

And so you know- your fingers a still beautiful and slender

Madmusiclover profile image
Madmusiclover

Please ring. They can’t see what you can. Tell them.

Polavan profile image
Polavan

I was told by my consultant that this is OA my fingers have gone exactly the same in the last 6 months yet my RA is controlled, anti inflammatories were advised which do help with the pain a little but kind of told little they can do!

70schick profile image
70schick

Mine too, can’t even wear my wedding ring anymore. 😔 sending you a big hug.

Troygirl profile image
Troygirl

Yeap. Had to get rings cut off! Including my wedding band and engagement ring! They are sitting in the safe waiting till this nonsense settles down so they can be resized. Have been waiting TWO years for them to settle down!

in reply to Troygirl

Same here 🥺

AgedCrone profile image
AgedCrone in reply to Troygirl

I’d get them made into a pendant ...after 20 + years my fingers have never returned to their original size.....once the damage is done...it’s best to accept it & move on.

There are some things with RA you just have to accept & move on from.

Peruse the online sites & get copy diamond rings that fool everybody!Then if your ring size goes up again...just get OH to buy you another one without breaking the bank.

Troygirl profile image
Troygirl in reply to AgedCrone

Weird thing is XRays show I do not have ANY joint damage, but more times than less severe inflammation!

AgedCrone profile image
AgedCrone in reply to Troygirl

Well if you have no damage.....there is nothing to improve is there?

Everybody’s knuckle joints enlarge with age....I have very skinny fingers, but the enlarged knuckles mean I need to have a larger ring size....then have a spring in any ring with a large stone to stop it slipping around.....you could do that with your rings...have them made to go over your knuckles then have a spring fitted. Or you can get transparent sleeves to slip on the ring....but I have never had much success with those.

Troygirl profile image
Troygirl in reply to AgedCrone

Whole fingers are swollen not just knuckles!! Inflammation every day but NO joint damage. Plenty to improve on. What the hell do I have? What is causing the inflammation that makes my fingers look like sausages on really bad days?

The doctor who prescribed me high doses of prednisone for over year & a half tells me I have RA even though XRays show NO damage.

I am going to ask him at my next appointment coming up next week why Xrays show no damage. Hands & even shoulder XRays!

PS. The RA dr I believe is a quack and it has been two years of hell now with Cushing Syndrome! Getting new Dr May 8th!

AgedCrone profile image
AgedCrone in reply to Troygirl

Well changing your your doctors should help.

How long have you been diagnosed? I’m sure it took me a good two or three years before I got everything sorted and I got settled on drugs that suited me ....but 20+ years on, my hands have never gone back to “normal” ... but I willingly put up with that not to have the pain.

I don’t stress over bloods or Xrays......I concentrate on eating well, keeping moving & accepting .....that is the hardest.

There is no rhyme or reason to RA.... I decided a long time ago to go with the flow ....if I am without pain I accept my lot & I am grateful.

Stressing over a disease so few understand only brings disappointment.

I have been very fortunate with my doctors...they seem to have prescribed the right drugs...eventually.

Hang on in there....things will improve.

Troygirl profile image
Troygirl in reply to AgedCrone

Since August 2017. Nothing has worked! Believe me!

Last resort to date has been antibiotic treatment! That's not working either!

Sometimes I wish I could just cut my hands off. That's how bad it gets and this is almost every single day for over a year!

My General practitioner who has been 1000 times more useful than my RA dr seems to think I may have refractory RA! He recommended the new RA doctor I start May 8th!

AgedCrone profile image
AgedCrone in reply to Troygirl

You do sound so very stressed .....I do believe you that you haven’t yet found the right drugs for you.....maybe if after three years you could just try to accept & tell yourself things can improve ....maybe all that adrenaline rushing around your body would calm down & when you see your new rheumatologist he will be able prescribe something you haven't tried before & it will be successful?

I really do know how painful this disease can be...but if you read back on this forum you will find that if you can only get in the right head space & really accept you have got it... & understand fighting against it step of the way won’t make it go away....things can get better.

I hope your new doctor manages to prescribe successful treatment, but don’t expect miracles overnight.

Maybe you could phone your new doctor’s secretary & see if they can bring your appointment forward or at least put you in a cancellation list?

Troygirl profile image
Troygirl in reply to AgedCrone

I accept what I have. My frustration is I have RA and NOTHING tried is helping. Even high powered IV RA drugs!

Why? why is my case so difficult?

Crappy doc?

I am frustrated because I wasted so much time on a so called expert that just keeps giving me prednisone!

I am frustrated because I do not even look like myself compared to one single year ago.

I am frustrated when I am in the market and people come up to me and say Lisa is that you.

I am frustrated because I learned about RA drugs and the effects after the fact, especially prednisone. Too late now...have Cushing Syndrome.

I am frustrated because all I learned about this gross disease is all by myself with the help of support groups like this and not my doctor the so called expert.

Adrenline? hahaha! Not much of that left anymore either. So tired all the time that on the weekends and days off I sleep it all away. As a matter of fact I am going back to bed in a few minutes.

Head is just fine. It is the pain and constant fatigue that is the problem. But I go to work and just deal and then come home and go to bed. I am sleeping my life away!

No amount of breathing, yoga or meditation can take away the endless day after day pain. Tried it all!

Talk to you soon!

Shalf profile image
Shalf in reply to Troygirl

Hi Troygirl, I am in a similar boat to yourself. Rheumy has tried every DMARD and 6 biologics and my disease still active. It has been described as moderate to severe. I had a recent consultation and told my Rheumy that I was worried. She understood but insisted we keep trying. I have been moved onto another drug. It can be scary, I know. My right hand can't do much now and the left has joined in although presently not as bad. I also want to cut my hand off when the disease decides to try and cripple me with pain. There is light at the end of the tunnel I am sure. I have been reading up on something to help treat inflammation. Read my next post!

Try and stay calm. I should practice what I preach. I do try! x

nomoreheels profile image
nomoreheels

I think the clue is that you say you're flaring, this is when damage can happen so it's entirely feasible you can see changes happening rapidly. My wedding ring was originally a J, then was cur off & increased after a 3 month break from meds & the last time it was cut off it was increased to an O. It's my PIP joints that have made it difficult to get rings over, in fact it's only my wedding ring I wear all the time.

I'd see what your Rheumy suggests... as you only spoke to your Nurse on Wednesday give her chance to get back to you. It may be you need an increase in dose or even a change in meds.

Purplepancy profile image
Purplepancy

Hipurple pansy here and my fingers are terribly deformed and yes it's part of RA my right hand hangs to the side and is like a claw now left hand is rapidly following but what's bothering me now is that my r a nurse at the clinic has never said anything about them or about permanent damage !!!!and they are bad and won't straighten at all worried now take care x

Pulfs profile image
Pulfs

I had to have a new wedding ring from size i to l .Fingers on rt had are drifting even after having 3 knuckles replaced and tendon on middle finger realigned. Think there is some OA as well. Hate how RA reforms the hands 😥

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