Pain & Stiffness: I am new here. I was diagnosed with... - NRAS

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Pain & Stiffness

11 Replies

I am new here. I was diagnosed with Inflammatory Arthritis in July. I am on 15mg Methothorexate. I am improving but my pain varies day by day. I have to take 2 of 10mg of Co-dydramol four times a day, when in a lot of pain. I am having hand therapy every two weeks& I have different splints made for me. I have odema gloves because fingers swell up. I am doing all my excersie everyday three to five times. I have a lot of problems cutting anything, so have have to buy ready made meals. I am so so fade up with it. Sometimes my fingers get so stiff all of sudden that I am getting worried.

Has anybody suffering from these kind of pain & frustration? What do people do. & cope.

I have been gardening for years & have allotment too but this year have not been able to do anything.

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11 Replies
helixhelix profile image
helixhelix

Hang on in there. Even tho' it may seem an eternity it's still early days for you - everything takes 10 times as long as you would like with this disease. Start planning your allotment layout for next year, as you should be able to get back to it. My pumpkins this year were fabulous!

in reply tohelixhelix

Thank you helixhelix.

Kariss profile image
Kariss

Hello and welcome to the forum...this is a great place for tips on how to cope and just to chat to others with similar problems. I too have inflammatory arthritis and when I started on methotrexate I was warned it could take up to 12 weeks to get into my system and I noticed relief about week 9, so be patient, you are nearly there! :) The sudden swelling is how my fingers behave and wearing the gloves is really good. I often wear them all day to do chores as they provide the warmth and extra support. Try wrapping your hands in a warm towel or a heated wheat bag when you are sitting down...I find that helpful.

I used to garden a lot and still do but I have to pace myself - half an hour or up to an hour at a time depending on what I'm tackling. I have had to make my garden easier to manage as it is quite big and no one else in my family wants to take it on. It has become more of a wildlife garden now! Some tools like seceteurs are hard to manage and I have had to choose better sharper ones to make it easier on my hands. Wolf do a good range. I find too much bending hard so do small amounts, clearing up as I go so that I don't suddenly find my energy has gone and I've got a huge mess to tidy away! It's very frustrating as I always want to do more.

Cooking can be difficult too as you say, but there are quite a few kitchen tools available to help like tin and jar openers and shaped knives. If you go online and look under arthritis aids you will find plenty to choose from.

It sounds like you are doing all the right things so far and things should start to feel better for you as the meds get well into your system and hopefully you will be able to do more again, but it is a slow job and can't be rushed. If the methotrexate doesn't work for you, there are others to try so don't despair. It took me a long while to feel more myself again and be able to function better. Meanwhile try and get friends and family to help as much as possible if you can and rest whenever you are able. Keeping a little diary of how you are feeling may be a good idea as you can then see your progress and also have a record to refer to when you go back for check ups.

Wishing you good luck for improvement soon - pop back on here anytime you feel fed up or have questions to ask, or just for a moan!

Best wishes K

nomoreheels profile image
nomoreheels

It's horrible in the early days, frightening even because of the loss of dexterity when your hands are affected. I was spared this as it was my feet that were worst hit but believe me to me it was just as disconcerting, not being able to walk any distance & having to plan around such painful feet at 48 was a real worry. Then, bingo, everything changed, until the DMARD I was on, hydroxychloroquine, stopped working & anyone who knows this drug is aware you can't increase the dose from what I was on, 400 mg, so it was another start, MTX was added. I was so disappointed when this double therapy didn't work but my Consultant stopped the HCQ &, bingo again, just the MTX worked! Only in the last year have I needed to add another DMARD again, that's nearly 7 years.

One thing I wonder if you'd benefit from as you still have such inflammation & because of that pain, has your Rheumy not offered an NSAID? Unless there's good reason that should help reduce your inflammation & maybe allow you to reduce the co-drydamol. It might be worth asking at your next appointment.

So don't despair, you're the worst you'll be waiting for the meds to work & you will get back to your allotment. You may have to adapt with some things, I have a garden tool cart I can sit on & wheel along on as bending & kneeling is an issue, it's a bit like a kids ride-along & it's brill. I've found ratchet secateurs much easier on the hands too, they don't need as much strength to operate. I've probably more short cuts that I do so naturally nowadays but you'll learn to garden the way that's easiest for you I'm sure.

Anyway, I hope you find it helpful being here. Any other problems or concerns & we'll happy to share our experiences. :)

AgedCrone profile image
AgedCrone

Hang on in there.... Everybody hopes the drug they take will work right away, but Mtx does take a while to kick in.....but when it does you'll be so glad you persevered.

If your garden gets beyond you - Age UK have volunteers who will come & sort it for a small fee. I now use the service every Spring to get my garden tidied up...it really helps to have ineckess thing to worry about! But I have cheated & had my lawn AstroTurfed!,

I do hope Mtx starts working its magic very soon!

in reply toAgedCrone

Thank you AgedCrone.

Amy_Lee profile image
Amy_Lee

Hi HMcevoy ,

Like others said above, you need to hang on there for the mtx to work on you. You will be fine slowly when mtx kicks in.

Have a look at the 2 video below, there are very informative and very well organized, I got most of my answers from these videos.

healthunlocked.com/ra-warri...

Below link was my recovery process. I hope it can inspire you to look forward and move on positively.

healthunlocked.com/ra-warri....

in reply toAmy_Lee

Thank you Amy_Lee. It has really open my eyes watching video. I have read early post on you, I am very impressed. I am going to be positive & keep going.

Amy_Lee profile image
Amy_Lee in reply to

I am glad that my post did inspire you to move on positively. I did feel hopeless too at the very early stage of RA where I knew nothing about it and I did not know who I could talk to.

Many RA patients do try to find some kind of exercise to work on, you need to see your own condition and below link is what I did and I hope it also gives you some idea what exercise to start with. It is very important to get on with some kinds of exercise that you can do as early as positive to avoid any muscle wastage and joints stiffness.

healthunlocked.com/ra-warri...

Hi there ,

sorry to hear you have been struggling to carry out certain activities at home . You may want to look into equipment that can help you.

You can ask to be referred to see an occupational therapist who maybe able to advise you, your GP or Rheumatology team should be able to to do this. Or look at our spring chicken website which has lots of different gadgets that maybe able to help make your life easier .

Here's the link :nras.org.uk/news/nras-partn... .

in reply to

Thank you Alison-NRAS

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