Worried about hand: I'd like some advice please. I have... - NRAS

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Worried about hand

Createsomething profile image

I'd like some advice please. I have had RA damaging my hands and wrists for a long time, but I've never experienced anything like this before. My 2nd and 3rd fingers hang down, they won't straighten. My hands been like this for months. It feels like something's snapped, torn or disintegrated on the back of my hand so I went to my GP. She glanced at my hands and said "oh they're a mess aren't they" 😖and said and she wouldn't do anything as it's a specialized thing Rheumatology. She didn't even examine it. I was told i had to contact the Rheumatology nurses. I left several messages and they never got back, I left messages for my consultants secretary too ,same thing. This was last year before Christmas. Unfortunately I missed my Rheumatology appointment in January due to my brain fog. It was 2.30pm and I remembered it at 4.30pm that day and I tried to get in but they said the Rheumy had already gone home! I tried again with a different GP about not being able to straighten my hand getting worse and she said to wait until my Rheumatology appointment (May). I live alone and struggle a lot because this is the hand I use for everything. Someone finally got back to me and said I could go to a hospital out of my town to have a steroid injection in it, as I believed it was trigger finger. Now I'm concerned because ive had to self diagnose, but this could be wrong diagnosis! If I pay for a taxi to this hospital and get a steroid then it could make it worse if it's not trigger finger but something else entirely. It feels like something's pulled in and stuck on the back of my hand. I can't go on like this it's deteriorated so much. My thought is to just go to A&E tomorrow. At least they can X ray or MRI it.

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37 Replies
Madmusiclover profile image
Madmusiclover

How upsetting. Personally yes I’d go to A and E. I’m due a knee steroid injection (by orthopaedics) but my rheumy has steered me away from it as I may be having an op on kneecap and they always leave a gap between steroid joint injection and an op; so it may delay things. I had similar concerns to you. Not sure why steroid injection was being suggested. You can ask for them to call the rheumatologist on duty when at A and E. I learned this after the event of an A and E incident.

Createsomething profile image
Createsomething in reply to Madmusiclover

Thanks for your advice music lover.

julie1908 profile image
julie1908

Hi, My hands are almost exactly the same, I don’t seem to have any muscle in the back of my hands and one of them dips like yours. Last summer my rheumatologist consultant sent me for X-rays and when I went back for the results she more a less said that the damage was done by RA and never suggested that anything could be done. But a couple of weeks ago i had an appointment with my rheumatologist nurse and she seemed more concerned that i should have better quality so she has referred me to orthopaedics, plastic surgeon and physiotherapist. It just goes to show you 2 totally different outcomes. x

wishbone profile image
wishbone

Fingers 2, 3 and 4 on my right hand are quite badly clawed. Rheumy are not particularly interested in them and an orthopaedic surgeon who looked at them some years ago said he would prefer not to operate as long as I can get by. Thankfully my left hand has only mild deformity.

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Createsomething in reply to wishbone

That's a shame they didn't want to operate. Are your wrists affected much? I have swelling and deformity in my fingers of my left hand as well as the right. However my wrists are permanently very swollen painful on both hands which makes it additionally difficult.

wishbone profile image
wishbone in reply to Createsomething

Can't say that I was very enthusiastic about having an op back then and was quite relieved when the surgeon said it wasn't necessary. I was in the hospital about a suspected broken toe when the surgeon just happened to notice my hand. This was a good few years ago and my hands have gradually got worse, hence I could probably have surgery on my right hand if I pressed for it. Wrists are not swollen and only become painful with overuse. Even though my hands and feet have some serious deformity and can get pretty painful on times, they rarely get swollen or inflamed. Guess you could call me lucky in that respect. Also have some trouble with elbows and knees but worst of all of my joints are my shoulders, which give me a lot of grief as it can be extremely painful trying to lift my arms above the horizontal most of the time. Again little if any swelling in any of these joints.

I find Fenbed Forty 10% ibuprofen gel pretty effective on my hands and shoulders, but the only proper relief I get is when my RA is under control with meds, which unfortunately isn't the case for most of the time. Hope you get some relief soon

Createsomething profile image
Createsomething in reply to wishbone

Sorry to hear about your painful shoulders. I have had this problem it was very painful. It's calmed down in my shoulders now, but moved to my hips much more. I have the fenbid gel and it's ok for a few little joints. But not suitable for applying on all joints all over like I need. I've found it affects my stomach too much to continue using it unfortunately. The ibuprofen tablets affect my stomach so I need to steer clear of it. I buy the Voltarol gel which helps but it's very expensive.

wishbone profile image
wishbone in reply to Createsomething

Funny that, I find Fenbed much better than Voltarol, thankfully, as I get Fenbed on prescription. The only real relief from these things I've found, is to get my RA under control. Hope they hurry up and sort it for you.

sylvi profile image
sylvi

I had two steroid injections yesterday in my thumbs and fingers crossed it seems to have helped me. SO it would be worth you getting the injection done.xxxx

Createsomething profile image
Createsomething in reply to sylvi

Thanks Sylvi. I'm glad it seems to have helped.

AgedCrone profile image
AgedCrone

Have you tried calling 111 & explaining you don’t want to have treatment for something you have self diagnosed? They have clinicians who will call you back & listen to your explanation & maybe get you an appointment with a suitable doctor.

Worth a try rather than have an injection you might not need?

Createsomething profile image
Createsomething in reply to AgedCrone

That's a great idea👍thanks. I'm going to do that.

Anniebl24 profile image
Anniebl24

try to find it if you have a hand therapist in your local hospital. I have been to one a few times and found them very helpful.

Createsomething profile image
Createsomething in reply to Anniebl24

Thanks, I will ask about that.

summer32A profile image
summer32A

Hand physio or ot

Createsomething profile image
Createsomething in reply to summer32A

Thanks summer.

Mumcon profile image
Mumcon

I have just had an operation on my hands My middle finger has been fused ( it was hanging down like yours) and also a trapeztocmy ( probably wrong spelling)on my thumb The reason i went for the operation was i was suffering pain in both which was awful I've been in plaster three weeks and another one to go then the plaster comes off so i won't know if it has worked till then The plaster goes from my fingertips to my elbow and it's been frustrating to say the least plus it's my right hand and of course i'm right handed but hopefully it will have been worth it

Createsomething profile image
Createsomething in reply to Mumcon

I really hope your operation has worked well🙏. It's doubly difficult when it's your dominant hand. I hope you have help around the house.

Angels54 profile image
Angels54

Hi , I can sympathise with you as my hands are like this , I sometimes have to put them under pillow when I sleep as they curl up , really stiff , don’t feel I’m getting anything support , I think you you have to sort yourself out , I have waited 2 wks for advice just give up 👍

Createsomething profile image
Createsomething in reply to Angels54

I'm sorry to hear this Angels. Keep trying, that's what I've done. I rang 111 in the end and they helped by getting my GP involved again.

lily2003 profile image
lily2003

Sorry you're facing this, too, Createsomething. Just before my diagnosis and during the first year after, three of my finger joints went through this: two fingers on my left (pinky and ring) and one on the right hand (pinky). I did get to see the orthopedic surgeon who was a hand specialist. (I'm in the US.)

We tried some plastic joint splints hoping the tendons would stretch back to their position. She did explain that it is a tendon issue. (At least, this is true for me.) They stretch and then break. I also have clawed toes, though I've had them most of my life.

The splints didn't work and she did say that fusing could make them permanently straight, if I wish. Some choose that so the issue isn't so noticeable to others.

But, for me, having my pinky joints bent actually means I can still type. I think it'd be harder if they were straight and unable to bend. Clapping is difficult, but I fake it. (And I'm not much in an audience since the pandemic!) I can't cup water in my left hand with the two fingers bent, but I just rely on my right if, say, I'm splashing water on my face.

They don't hurt… unless I bang them and then, wow, that's an "ow"-ee.

A few of my friends know about this, but most don't and have never noticed. So I have learned to adapt to the "new me."

I did have the benefit of consulting a doctor and think you should as well. Perhaps more could be done to save yours. Best of luck.

Createsomething profile image
Createsomething in reply to lily2003

Hi Lily, thanks for all your advice, it's much appreciated. I think my tendons could be broken as there's a painful lump on the back of my hand, but I'm really not sure. I'm just waiting now for my hospital appointment. I don't think I could have them fused but it's never been discussed with my Rheumatologist. The only thing that gives me any joy is my art and crafts, painting, sewing, embroidery. I can only manage to do little bits, but at least it's better than nothing. I'm not bothered about what others think, if they can't accept me as I am then they're not worth bothering about!

KittyJ profile image
KittyJ

that looks painful😔 I have had three tendons snap so I can’t straighten them but they don’t look like that on the back of my hand. Would the hospital you’re going to for the steroid injection examine it first to see if they agree it’s trigger finger? I hope they wouldn’t just give it if when they looked at it they didn’t agree. Worth asking them questions when you get there before it’s done I think. 🤞🏻 you get some help. Let us know how you get on.

Createsomething profile image
Createsomething in reply to KittyJ

Hi Kitty that sounds painful. Do they need repairing? Yes I asked my GP for advice, and he's alleviated some of my worries regarding the injection. They will examine my hand properly he tells me, before doing any injection. So fingers crossed (if only😆) it will work.

KittyJ profile image
KittyJ in reply to Createsomething

that’s good news they’ll examine it before doing anything.

Mine aren’t painful any more, they were when it happened. I was going to have them repaired but the first one was when I had a baby to look after so I said I’d wait and then never got round to it, the other two were going to be repaired but the surgeon wasn’t very reassuring that they’d work and others I spoke to didn’t have good results so as I’ve got used to them not moving I haven’t had any done. May do one day but may not 😊 Let us know how you get on.

Createsomething profile image
Createsomething in reply to KittyJ

I'm glad they're not painful now. It seems like surgery isn't a good option then from what I gather. Thanks, I will do,☺️

Bessieboo1 profile image
Bessieboo1

I had my little and ring fingers amputated on my left hand 6 weeks ago as I had a badly clawed hand, complex regional pain syndrome and ulnar nerve neuropathy. It had been like it for about 9 years and was extremely painful and they just kept getting caught on stuff. It was a very drastic and obviously final decision. The surgery was done by 2 consultants orthopaedic and plastic and I’m extremely grateful for their support. Best of luck xxx

Createsomething profile image
Createsomething in reply to Bessieboo1

Hi Bessieboo, I'm shocked and saddened that you've had to go through this. Was the clawed hand down to progressive RA ? I hope you've healed well from your surgery both physically and mentally. Was it on your dominant hand? Do you mind me asking if you had to wait a long time for your surgery ? My GP told me a few years ago that it's probably ulnar nerve neuropathy that's causing pins and needles in my hand, but nothing was done about it. Kind wishes to you xx

Bessieboo1 profile image
Bessieboo1 in reply to Createsomething

I started with the problem about 9 years ago, it came on quite gradually and for about 6 years the hospital just gave me a splint to stop them clawing. I kept being passed from one consultant to another to another and so on. They came up with ulna nerve neuropathy due to RA as they were unsure of diagnosis!!! It was then recommended that I see a consultant out of area who was shocked and annoyed that I hadn’t been offered any treatment. He came up with several different options and wrote to the consultant who I had seen, he totally disregarded any options. I was a nurse at Spire Hospital at the time and I found a plastic surgeon at work who was prepared to give me Botox injections in my forearm to see if this would work. I had 4 treatments but sadly this treatment didn’t work. The best thing for me was moving to North Yorkshire. My new rheumatologist referred me to a hand surgeon who gave me a couple of options for treatment either complex tendon surgery over the period of about a year or amputation. I went for the amputation as it had been going on for so long and I felt this was the best option for me. He tried a partial amputation to start with but this caused problems so with the help of a plastic colleague they did a total amputation. There is still some improvement to go on the healing side of things but I feel so relieved and grateful to these 2 consultants, I really can’t thank them enough. Xx

Createsomething profile image
Createsomething in reply to Bessieboo1

It's shocking that you didn't get the treatment you needed sooner. I'm in County Durham so I'm quite close to you. My previous Rheumy told me I have extremely rare blood, it's nicknamed Golden blood and only about 40-60 people have it in the whole world apparently. Due to this I think surgeons would be reluctant to operate on me, due to the risks involved, but I'm not really sure about the whole thing. The Rheumatologist who told me this is retired now. I tried to ask about what he'd told me about my rare blood with my GP but she changed the subject. I think she did it to stop me from being totally shocked and disheartened if I learn that I can't really have surgery due to the risks . I've mentioned having joint replacements wrists to other Rheumatologists years ago and they always skirted around the issue too. They said I was too young (40's) as they'd only last up to 10 years max then need redoing. Xx

Bessieboo1 profile image
Bessieboo1 in reply to Createsomething

We live in Kirkbymoorside so not too far from you at all. I hadn’t heard of golden blood before so being a nurse I had a read about it. I can see why surgeons would be reluctant to operate in case you need a transfusion but this then means that you will have to wait longer than most of us for joint surgery which is pretty crappy!! Keep positive, big hugs xx

Createsomething profile image
Createsomething in reply to Bessieboo1

That sounds like a lovely place to live. You sound like me, as I like to read up about things to gain more understanding especially health issues. Thanks for your support Bessieboo. Hugs to you too🤗xx

helixhelix profile image
helixhelix

This makes me sooooo angry! You live in a highly advanced country, not some cut off dessert with no medical facilities.

You deserve a specialist doctor, not a nurse (sorry nurses), to examine you, do any imaging and explain exactly what this is and whether it can be treated. I have had two trigger fingers in last 6 months, but each was treated within about 6 weeks or so. Also many bouts of tendinitis, also treated.

You deserve better! So complain, and very loudly.

AnnieJ123 profile image
AnnieJ123

I would certainly go to A&E. You need an ultrasound. If it is a ruptured tendon you will need a repair and I understand there is a short window to do this. The lump on the back of your hand indicates tendon damage. I wish you all the best.

Createsomething profile image
Createsomething

In regards to my hand, I just want to say thanks ever so much for all your kind replies!!. They've all been very helpful and informative, so I feel like I've got more knowledge as to what's going on with my hand and possible outcomes. This site is one of the best things that's happened to me recently. The support and caring guidance of others with RA has been tremendously beneficial, wish I'd known about it years ago! Sending kind, peaceful, healing wishes to everyone who took the time to reply, and everyone who is struggling with RA . xxx

Green230461 profile image
Green230461

I had something similar at Christmas. Saw rheumatoid consultant who gave me a months course of prednisone steroid and it has sorted itself! You need proper help dear old GP do not like RA issues. Hope you get sorted soon happy Easter 🐣

Createsomething profile image
Createsomething in reply to Green230461

Thanks happy Easter to you too.

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