Just been diagnosed with arthritis of my right hand

jan8787

Hi everyone

I am Jan

iam 62, I have fibromyalgia/ME/ osteoporosis of my spine, /tinnitus and undiagnosed extreme back pain since April 16th 2021 and back spasms, basically the other health issues I could cope with paving and resting but the extreme back pain is unlike anything I ever had before, I had an MRI a few weeks ago as doc doesn’t see patients since covid so I was sent to physio but I couldn’t do physio but the doc. said they treat bones so was sent there, it’s a long story sorry but in April last year I woke up not able to move my legs, paramedics were called gave me diazepam said it was a flare up of fibromyalgia but I knew it wasn’t anyway apart from having numb toes and a numb thigh last year for two weeks, and tingling across my stomach etc it was classed as fibromyalgia till April this year when apart from fractures and bulging discs they found inflammation so have to have another MRI on Thursday for a different area on my back the lady MRI was two hours long.

the reason for the second MRI is due to try find out where inflammation coming from.

the pain in my right hand is difficult and painful because I am right handed, the back pain was extreme in November and December I wanted to end it as not experienced anything like it before, I kept getting told to up my medication it actually didn’t help as most medications affect my stomach. Gels, heat rubs, tens machine nothing was helping and not been able to sleep either. Now the pain moves around it’s still consent but can move with a walking stick I got from physio I can’t walk far without pain, I can’t go my hobbies and I can’t use my camera I like talking photos, my husband is depressed and had to give up his job to be my full time carer, and yes he has seen a doc about it and we have a stair lift and walk in shower which helps thank goodness that was put in before this.

i can’t drive and feel fed up with it all.

how do people cope.

YvonneH

Hi @jan8787

You do have a lot going on here, it sounds like the back pain is one of the worst difficulties along with the pain and difficulty using your right hand.

They and your other issues have caused your mental health to suffer, and your husband is in a similar state having had to resign from work to care for you. Not having a secure diagnosis of all this is hard to manage and will add to the problem

To help with the problems with your hand/s we do have hand exercises which will help you keep as much movement there as is possible.

This is a link to one of our online community pages on stretching exercises including for the hand/wrist. You will need to scroll down to find the fingers and wrist but this will mean you see the other exercises on offer too which might be of help. When you click on the link you will be taken to a page on our website where you be able to watch a video or use the diagrams for exercises to help. When flaring or extra painful don't push yourself just go until it begins to be painful and then stop. As you keep on, over days and weeks you will find your are improving even if it doesn't feel like it initially.

This link, to emotional well being has a section on communication which might help both you and your husband and it has many ideas that might help you.

Here are 2 stories from people who have had emotional challenges and how they moved forward.

I hope this helps

Yvonne

jan8787

Hi Yvonne

Thank you so very much for all your messages snd the exercises and stories, sorry I just seen the messages,since April a lot has changed.i had my second MRI in may as with the first they found inflammation and the second MRI they found inflammation of the sacroiliac joints, so I was referred to rheumatology and I got an urgent app on the 11th of June. They haven’t yet seen my scans but due to the information they have and I had bloods done on the 11th June they diagnosed me as having ankylosing spondylitis, said I was quiet old at 62 to have it as usually 24 but did a genetic blood test as well. My hand is that as well, my elbow which is scaly red and pointed they don’t know yet, because I have reactions to a lot of medication they are seeing about injections but not for three weeks I think.

My Gp was supposed to be intouch but not helped in anyway at all and was supposed to ring but I heard nothing but it’s nothing new as that is what they are like.

thank you for the emotional well being section, I live in Northumberland and would be nice to meet someone who has the same, you said about friends we don’t have any as when I got fibromyalgia in 2009 and couldn’t go out they gave up and then and me haven’t been in touch and to me that is not friends so would be lovely to make some friends again.

i hope you can add a comment so people can find this if that’s ok?

Still struggling with doing things as haven’t driven for well over a year and my husband does the driving the housework and gardening, so yes please any advice and tips will be lovely and helpful, I can’t hoover either, just moving around is very painful but hopefully when the medication starts like. You said I will I hope be able to do more.

Thank you again

Will let you know how things go.

Jan

wazz42

Hi @jan8787

Now I love gardening, so I can keep you going there. There are lots of gradual changes I have made, and there's lots to read and enjoy here on our gardening discussion

I use long handled trowels and stuff, in fact there are loads of things, rakes even with (short handles for rakes 😉) long handles. They often have cushioned grip and you can get ones, I got some pipe lagging from a diy store and used that to make the handles easier to grip and softer, this site has lots of examples

https://livingmadeeasy.org.uk/advice-articles/gardening-made-easy

Don't feel compelled to buy something, see what you think would work and then see if anything you have will adapt. If you have a query please post it in the gardening discussion

You can get really fat kneelers now - I don't use them for kneeling but one of them on a low-ish stool means I can swivel and garden in the flower beds near the lawn or path you can get a 3 footed (nouns have gone) 'thing' that goes on the end of a walking stick. that means I can stand up more easily.

Anyway, dive in and say hi

xx

jan8787

Hi Wazz42

Thank you for your reply I really miss not able to fo what I did do in the garden, I am reading about what I can use in your gardening discussion.cushion grips definitely as my right hand is very painful but so is everything but when your right handed it’s not easy.

Not heard of fat kneelers but we get lots of weeds between plants sounds really good.

Thank you so very much.

I think a lot is about changing how you can change how you do things and I love photography but my camera is light but it’s still heavy to me so I use my phone now but I was doing an online photography course but I gave it up, I won a competition with one of my photos and I had only just started it was for a charity called CPRE. Anyway thank you very much for all the information hope to chat again soon.xx

Moira

I have bad arthritis in both hands and can no longer play the instruments I used to (piano, guitar, renaissance recorders and can just about manage the uke now). I got myself some hand supports in the chemist with the help a brilliant pharmasist. After shut-down, at last, I got my appointment with the hand surgeon, referred from the GP before Covid. He X-rayed, looked at me and said, "Which one do we start with?" So at the end of the year I should be getting a wee bone removed from the base of my wrist to make life easier. I was then sent to the Occupational Therapist.

However the OT at the hospital is absolutely brilliant. I have exercises to do, different splits and see her once a month. I also have various aids to help me with tasks like opening jars etc. If you can try and get an OT appointment - or physio, do.

I do gardening but do it in instalments 20 mins at a time. I can no longer kneel so even a cushion doesn't help. However I have tried to keep myself fit and can bend from the waist with flexed knees to do weeding. Long handled tools are good. I also sit on my kitchen stool to do some work.

The only driving I do now is driving my husband up the wall!

I am learning Welsh so that keeps me occupied. If you want to learn a language (very helpful to keep the wee grey cells going and keep you occupied) try "Duolingo". It's on-line and has a huge range of languages. After working through it, I now do classes, reading groups etc on-line, here in Wales with the Government/University. Don't know what I'd do without it - probably go even more stark raving bonkers than I am at the moment. If you can find something like that it might (or not) help.

Hope you can find something that suits. Don't give up, even if some days can be a struggle.

YvonneH

Hey, I'm learning Welsh too.

Not quite as far as you are but I'm on a 160 day streak (logging in to learn every day for 160 days) and feel good, I'm at level 3 so far. We live in Wales on the N coast so it would be good to be able to chat to friends and shopkeepers. I wonder if there are any more duolingo users here?

You are so right, keeping the brain active is really necessary to well being, and it gives me something to chat to people about when they ring up that's not arthritis related

Take care

xx

jan8787

https://community.versusarthritis.org/discussion/comment/696036#Comment_696036

Hi Yvonne

it’s now July and no further forward than I was in may.

i am in so much more pain and I am writing this with my left hand as my right hand is nearly useless.

I can’t remember if I updated since may or June as you be honest I really don’t know where I am as every day is rolling into one. I only have you to talk to as I can’t tell my husband as it’s bad enough him trying to cope with it’s his brothers death and his depression and high blood pressure, he knows how bad physically health is but I tell him my mental health is fine but actually it’s not I cry at night and the pain is getting worse, the last few days I can hardly walk like December and severe pain in the  lower back and fatigued and eating too much because can’t hardly move so eating more and weigh going on over 9 pounds and I am only 4ft 9 and nearly nine stone, I am coming out in spots I don’t know wh I rang the docs again because the  Social prescribing has not been intouch and it was may. They were supposed to be, doc said he will tell them but nothing and I can’t ring each day. I managed to see an OT after ringing every day for a week and he gave me a perch stool and two walking sticks and coming to try a bed topper but right now Iam not sure how that will be but we see when it arrives.

I have been trying to get through to rheumatology for weeks but either on holiday or poorly the one I saw in June so I spoke to the secretary who said write a letter so I asked my husband to write but still didn’t hear anything.

then today just made the icing on the cake a rheumatologist after I left an upset message got back to me and said

my MRI scans have disappeared, I had them done in May but trying to get hold of a rheumatologist nurse I did see on 11th June is virtually impossible I ring and ring and yes yesterday  I got a call after I said I am in so much pain please I need some help and a different rheumatologist said we can’t find your scans but you have got AS but we need to see your scans to confirm this and you need a consultation with a consultant before we can diagnose but I said it shows inflammation in my joints I was told by a physio the lower area and she said well you have it then!!!! I am well depressed on top with all this and I can’t carry on much longer without any help from anyone, I can’t eat properly cos I can’t use a knife and fork with pain, I can’t wash my hands properly without pain,I can’t even imagine our myself without pain my husband has to, I can’t txt or read a book it’s too heavy to lift, I can’t drive, I can’t do anything in the garden, I can’t even clean my teeth without pain and I now have serious gum disease, I can’t make a cup of tea, lift a glass, wash up,i and my husband have zero quality of live. I am not able o do anything, I try and walk as best I can but I have no days since April 16th 2021 without pain it’s 24/7 and even wakes me up at night.

Sorry for the long post but struggling is not the word and no treatment as yet apart from paracetamol and codeine.

Thank you.

jan

jan8787

https://community.versusarthritis.org/discussion/comment/696211#Comment_696211

Hi Moira

so sorry you can’t play your instruments anymore it must be be very frustrating for you.

i do have a thumb support but hasn’t made much difference and I had physio to wear now and again and rheumatology to say all the time so I don’t know who is right.

i refereed myself to OT and I got a perching stool and two walking sticks as I was told they can’t provide more help and to buy myself but I can’t afford to buy any aids either and have been looking at charity’s so will have to get intouch with CAB see if they can help with a form to send as only one charity I can find that will help.

i have one splint and it’s wearing out the hospital gave me it.

i have fibromyalgia and ME i forget how to get my words out and my memory is terrible do a language wouldn’t be any good, but I like photography and gardening but the weather here is not good for any gardening or sitting out now.

i can’t lift my camera do I use my phone but it’s hard with my left hand when I am right handed.

i am glad your finding things to do and it helps.

take care

Jan