Disappointed with my deformed hands, unrealistic?

suzygirl

My knuckles are deformed badly on my right hand and starting on my left. Unfortunately I am right handed, and it really hinders me. My fingers are curling inwards also, and the joints are always inflamed. They keep swelling up like sausages. The pain is overwhelming if I try to do anything. It limits my typing, so I am unable to post as much anymore. Cooking is a task which was once a delight but now has to be planned with military precision.

My hands are the main symptom I complained to the rheumy about continually. They argued over whether it was RA or SLE, watched and waited and finally treated. I discontinued the steroids and started Azathiaprione, the damage rapidly increased during this time much to my dismay. I really wanted to be off the steroids as they were increasing my weight, blood sugars and BP. So I am partly to blame.

I am devastated over my hands as life is so difficult, and I was assured on my first rheumy that the destructive arthritis seen in older patients was a thing of the past due to new meds. Yet, here I am. Am I unrealistic? Is it just inevitable when you have inflammatory arthritis? Every time I think I have accepted, it hits me all over again.

What do I do now?

kentishlady

Hello Suzy girl. Am sorry you are having such a tough time and do hope things will improve for you soon.I have OA with my back and 1knee affected which affects my mobility, butI do fall into the 'older'category of sufferers! As you mentioned, particularly with OA it is meant to affect older people as it is supposed to be a 'wear and tear' problem. However, it would appear from this forum that there are a lot of younger age group sufferers too and I wonder if the medical profession will need to review the way they look at arthur?

It's bad enough at any age as it impacts on your quality of life, but to have it when you are younger and often coping with a young family too, seems especially hard.

To have your hands affected must be so difficult, apart from being so painful. We don't realise how much we use various joints etc until we can't use them.

I do hope you can get some reliefe soon. Take care. Beryl

stickywicket

Oh Suzygirl, I wish I knew. I’m typing this with the ‘old-fashioned’ kind of RA hands – fingers and joints all over the shop. However, I’m in the fortunate position of having very little pain in them these days although my arthritis started there. There’s much that I can’t do but there’s also still much that I can do. Wearing wrist splints (There were no finger ones around then), as directed, helped me a lot as they kept my wrists straight so that, when they finally fused themselves, they fused in a useful position. I don’t know how much contact you’ve had with the splint people but I’d ask if you don’t have any.

Fingers themselves are very difficult to do without and very difficult to do anything with when they’re inflamed and sausagey. At those times I really would advise you do as little as possible and get the family to pick up the slack. Organise a rota for them. It doesn’t have to be forever, just until you are able to do a bit more.

Don’t blame yourself at all. This is a hit and miss business for all concerned. We and the docs do what seems best at the time. Getting off steroids is normally a good decision but sometimes it isn’t and there’s no knowing in advance. End of.

I have been told, by a physio who had no axe to grind, that most physios just don’t see people like me these days as the DMARDS etc prevent joint destruction. So, the rheumatologist who told you the same thing was more or less right. I don’t think it’s at all inevitable: I just think you got unlucky.

I’ve no real consolation to offer except to say that, with my fused wrists and ankles and my new THRs and TKRs, I’m in less pain than ever before. There was light at the end of the tunnel for me and I hope there will be too for you.

P.S. Have you tried typing with a stylus on a touch keyboard?

MrOptimist

Suzygirl, there are many surgical proceedures for the treatment of arthritis in the hands and an experienced Orthopedic Surgeon who specialises in hand surgery, would help you understand your options. Maybe a chat with your GP to see what he/she thinks might be useful. Hope this info helps

dreamdaisy

Of course you are disappointed and with good reason; it's another bitter blow. DMARDs should not only bring the disease under some degree of control but in doing that they also reduce the speed and progression of damage. If you have not been on them for that long (or were on them then took a break) then that may explain the damage. Or it could just be plain bad luck. None of us know our arthritic futures but you have been hit unreasonably hard. Dammit all to hell, yes? :x I know one thing, however, this is not your fault. DD

suzygirl

Thank you all. It has been bothering me for a while, but finally feel ready to sort it out. I am going to invest in some kitchen gadgets as I used to enjoy cooking and I miss it. I stopped making cakes, but used to find it so satisfying and the boys enjoyed them!

I also have an appt with the gp to discuss options, hand surgery was mentioned but the physio thinks it is too late for that. Using the hand or fingers causes pain and swelling to the already painful and swollen state. This presents a challenge as it is hard not to use your hands.

I will have a look at voice activated software, my hubby has mentioned it before. I find it hard to learn new techie things though. Worth a look however.

Sticky the physio said not to a finger splint, as I wanted my finger to straighten, she said they were ineffective. Where did you get yours from?

I have let things get on top of me for a few months, the menieres disease, the optic neuritis, the SLE and Sjorgens symptoms, diabetes, hypertension, lumbar and cervical spondylosis at times can become a tad much. Add in lifes natural dramas and I want to stop the world and get off.

As always I appreciate peoples responses, as it helps.

MrOptimist

suzygirl wrote:

I also have an appt with the gp to discuss options, hand surgery was mentioned but the physio thinks it is too late for that.


With all due respect to your physiotherapist, I do not think she is the one best qualified to give you an opinion as to whether surgery would be an option or not

stickywicket

The kitchen gadgets are a good idea, Suzygirl, as is anything that enables you to continue with something you enjoy.

I agree with MrOptimist. The person to decide on the viability, or otherwise, of hand surgery is the hand surgeon. Mine told me years ago that there was little point for me but, if you don’t ask you don’t get.

As for Voice Activated Software – I know Julie (pink flamingo) got some. She used it but did have difficulties and invested a fair bit of time in it. I don’t know if she’s still using it. I’ll ask.

I never had a finger splint, just wrist splints. My rheumatologist referred me to what was then ‘Appliances’ and what is now, probably, orthotics for them. Mig’s just got a finger splint and I think Numpty has, or has had, one.

You have far too much going on. Do whatever you can to ease the pressure.

frogmorton

Oh Suzy

I am so upset for you! and cross that things are so bad.

It is excellent to hear you are planning to get some bits to make life easier. Dragon softwear is what some folks use on here. Can be bought form A*azon amongst others and can be trained quite quickly to understand your voice (accent - which is probably better than mine )

I am so glad MrO said exactly what I wanted to - remember Dorcas has had new finger joint(s?) (I don't remember the correct words) so it IS possible and your GP will probably at least let you get a 'proper' opinion.

I had missed you in the book-club, but I totally understand now

Love and gentle ((()))

Toni xxx

suzygirl

Your kindness and understanding is what enables me to share. It is hard to offload at times, but when I do, I find it helps. It is so nice not to be judged.

I was trying to explain to someone how hard it is to be diagnosed with yet another illness. A lot of people don't understand, as you already sick and unable to work. This is a hard attitude to tolerate, as a limited life is limited further. It gets harder and harder to bounce back.

Found the pain management group today very negative, hoping it gets better. Now feeling the reason I am so weak is as I am not trying hard enough to be fit. Yet my lupus makes me weak, this was hard to get across. Repetitive movements make me weak, so the exercise class next week will be interesting!! Once went swimming and was too weak after to get changed, let alone get home :oops:

Buka

I think there are still a percentage of people unlucky with joint deterioration even with the better meds that are around these days. In the last five years my hands have really deteriorated and my fingers are completely drifting now. When they first started to show the damage I was horrified and imagined that I would become totally helpless and need constant assistance. However, I am reasonably pain free so I there is hope that you will get the pain under control eventually. I am able to type this but have to go back to correct my many mistakes. I am a complete technophobe but I have the dragon software on my machine and if you take the time to do the training its really clever and helps a lot so I would start with a basic package and give it a go. I still cook but need help with lifting heavy pans etc. Recently I found I could knit (never tried before) and am doing some daily to ensure my hands get exercise. I also still drive a manual car. Although it all seems really bad for you right now it is possible that things can improve. You are having to deal with an awful lot and my thoughts are with you.

Bukax

Catie

Hi Suzygirl
You have so much to cope with and I wish I could offer some advice which would help. The only thing I will say is keep talking about how you feel when feeling overwhelmed with everything. There are lots of listening ears here and support when needed .

Catie xx

stickywicket

suzygirl wrote:

Now feeling the reason I am so weak is as I am not trying hard enough to be fit. Yet my lupus makes me weak, this was hard to get across. Repetitive movements make me weak, so the exercise class next week will be interesting!!

Don't be tempted to overdo it, Suzygirl. In a class, the temptation is always there. You clearly need to build up very, very slowly, at your own pace, not that of others.

I found it so difficult, pre-TKRs and THRs as I found I built up stamina, slowly and carefully, only to have to let it all go again with the next flare. It's so demoralising.

If you can, I'd suggest private physio with one who specialises in musculo-skeletal problems and is willing to take it at your pace.

suzygirl

Thank you Buka, Catie and Stickywicket, your comments are helpful and appreciated.

I bought a carpet sweeper yesterday, my friend has one and my mom suggested it would help me. It is brilliant, the vac is too heavy for me, but I used this downstairs today to get rid of crumbs and it actually sucked up the cats laser pen :oops: It made me feel so good to have the mess cleared and by me for a change!

This inspired me to get a couple of kitchen gadgets I have been looking at for ages to make life easier. One is a kitchen mixer to help with cakes, mashed potato and bread dough. The other chops veg for you. I miss cooking so much, I will let you know how I get on with them.

Thanks for listening.

stickywicket

I resisted disability aids for years. I didn't mind having things like your carpet sweeper but I wasn't going to have anything that was specifically for disabled people. Now I'll have anything that helps me to do the stuff I want to do. It makes sense.

barbara12

hello Suzy
Sorry Im late seeing this, but I do feel for you, I am so glad you are talking to us about this ....I do hope that either your physio or GP can put you in touch with a surgeon to see what is possible....and please lrt us know how you get on...((((()))xx

mig

Hi Suzy,I have only just read through this post,the meds though they have taken the inflammation away they didn't stop the deformity of my right hand,I have as Sticky said a resting splint that the ot people made me and a buddy strap as the joint on my little finger is all but gone ( you strap the two fingers together).Surgery was mentioned further down the line if the meds don't stop the damage occurring ,that would be my last resort I'm a bit of a coward.I have a carpet sweeper but every so often hubby will Hoover.We have something called a nicer dicer to chop veg,fruit and salad my hubby likes doing it but it is easy for me to use,I have no disabled aids as such just sensible things that you can get in the shops .Mig

maria09

Hi Suzy
Physio's don't know everything stating surgery won't help isn't her decision it's an Orthopaedic Consultants. There are many things they can do but it will depend on if they think you will be able to benefit from them.
I have OAcand Inflammatory arthritis I'm 50 and have been suffering from nodal arthritis to both hands my finger joints are nobbly with many going wonky no near as bad as yours but the pain is horrendous so for you it must be unbearable.
Just see what your GP and consultants say don't give up keep going the more you ask the more they are likely to keep listening to you
Take care
Maria

suzygirl

Thanks, I will let you know what the gp says. I have buried my head in the sand somewhat, although it isn't easy to deal with. However my new kitchen gadgets have arrived today