Will the pain ever go?

Eeyore

I have spent the last few months feeling sorry for myself, but having read some of the posts on here I see that some people are in a much worse state that I am - puts things in perspective! Although I do still feel sorry for myself sometimes……

This time last year I was a healthy 72-year-old. No problems. But one day in November I woke up in excruciating pain - feet, knees, hands. My fingers were curled tightly into my palms and could not be straightened. My husband went to the GP surgery to talk to a receptionist in person to stress the urgency of the situation and wonder of wonders she arranged for a locum doctor to call that afternoon! He was brilliant, realised immediately that it was R.A., arranged for a Community Nurse to come out the following day to take bloods but without waiting for the results did an urgent referral to the hospital. Unfortunately in today’s England that “urgent” referral in November resulted in an appointment in February…. My GP (via phone conversations, no chance of a face-to-face of course) prescribed various painkillers, including Tramadol, which had no effect so in December he put me on Prednisolone which eased the pain considerably. The rheumatoid consultant was lovely, she gave me a thorough examination and sent me for X-rays and further blood tests. She also told me I probably wouldn’t see her again as she was the only R.A. consultant in the hospital and didn’t have enough hours in the day. Familiar story, eh? So now I see a rheumatoid nurse every 3 months with one telephone chat in between. I was diagnosed with acute onset sero positive rheumatoid arthritis and I was put on Methotrexate at the end of February and although it has certainly helped I am still in constant pain, I have “flares” every 4 or 5 weeks and I am for the most part housebound. It hurts to walk even a few paces. Stairs are a complete no-no. The Methotrexate tablets caused nausea when increased to 20mg so now I have Metoject pens which are better. I am still taking Prednisolone but the nurse is gradually reducing the dosage and I will probably be off it completely by Christmas - I hope! The lack of a decent night’s sleep is debilitating but the medical folk just seem to think it’s normal, get used to it. I see my nurse again in 2 weeks but I don’t hold out a lot of hope that she will try anything new. Her mantra seems to be “it’s early days yet”. 

What with Covid and now this I seem to have lost the last 4 years and at my age that’s NOT good! I want my old life back but I know that’s not going to happen. But surely I can get to a better place than I’m in now? I suppose I must be patient. At least I have found this forum and get comfort from the many and varied posts, so thank you all! Sorry for wittering on so long.

stickywicket

I think you're grieving for your former life. It's understandable but not helprul if it goes on. We have to look forwards not backwards. Hard when the future looks tough but, believe me, we get used to the pain. It's not relentless all the time and I've always made a point of taking up something new and interesting for everythimg I've had to let go. It works. And it stops us thinking about,pain which always makes it seem worse.

Things will improve. You'll have good times and bad but the good ones can be very good indeed.

Eeyore

Thank you, stickywicket. You're right, and I know you're right. We have to play the hands we're dealt. But now and then that little inner voice shouts "it's not fair"!!! Well, we all know life ISN'T fair and mostly we learn to deal with it. Hopefully I will get more help from the medical staff, the pain will lessen and I will become mobile again. And then I can start to live this different way of life.

Thank you for helping me get grounded again, I promise to try to be more positive.

stickywicket

It's not easy but.......

Whý not check out some of Versus Arthritis's exercises? Probably the last thing you want to do but physios have always told me to do strengthening exercises daily when things are good and just to take each joint through range of movememenr when bad. It helps us keep what we have and improve during the better times. Maybe time them for just after some pain relief has kicked in. Good luck.

Eeyore

Thanks again - I have printed off some of the exercise sheets and do what exercises I can. Use it or lose it, eh? I do find the hand, wrist, shoulder, neck and elbow exercises helpful when pain allows.

jamieA

Hi @Eeyore

Your story has a familiar ring to me - I went through a very similar experience in late October 2020 when I was diagnosed with psoriatic arthritis. In my case I couldn't close my hands, move my shoulders or bend my knee. I was initially prescribed sulfasalazine which didn't work, then MTX was added and the combination didn't work. By late June 2021 I was still no better and pain levels were very high - I was on morphine at one point. I realised that my rheumatologist wasn't being proactive in my treatment and wrote a strong letter to him detailing my issues and lack of solution. We had a very frank discussion and he moved me onto the biologic adalimumab in late July 2021 and by September the biologic had really kicked in. It has made a significant difference. I'm not cured but if my worst pain level was a 10 I'm usually at a 1 or 2 now.

Having never had a chronic condition before I've realised that I need to be assertive in my dealings with medics.

I hope you get the right treatment soon.

Eeyore

hello jamieA

It's sad that you had to go to those lengths to get the right attention and treatment, but well done you for being assertive. I intend to be just as assertive at my appointment with the RA nurse the week after next. Bless her, she's a lovely person but young and probably thinks I am a VERY old person! Which in NHS years is probably right, they class anyone over 70 as "old" but I still feel as though I'm in my 30s - until I look in a mirror of course! The rheumatoid consultant has been off work on sick leave for several weeks but I believe she is back at work now - poor woman will have a huge backlog now, of course - but hopefully my nurse can talk to her about me, and I might get some more help. I would cross my fingers but that's not easy these days……!

Good to hear that your pain has reduced so much, I hear only good things about biologics and long for the day when I am considered a suitable candidate for them..

Woofy

Hi there.
Almost a carbon copy of my RA story. I am now on Metoject 25mg and Leflunomide 10mg daily. It’s not perfect, but it is helping.

I am elated that in three years nearly, I haven’t had to go back on steroids between appointments.

Get back to your rheumatology nurse, if when you reduce your steroids you experience more pain.

Sometimes it takes a long time to get the meds right, but I am sure they will. I am 66 so know where you are coming from.

Good luck.

maz59

hi I am newly diagnosed with RA predominantly in my fingers & wrists. As a manual worker I am now on sick leave with very little prospect of ever returning to work. The shock of having to get used to a ‘new’ life has really hit me hard. I only hope that my meds kick in soon & the pain reduces. I am thankful to be part of this group, I now don’t feel quite so alone.
Maria

frogmorton

Hi @maz59

I am so sorry to hear about your recent diagnosis. I don't know what your job is obviously, but hopefully your work can look at supporting you when hopefully your medication gets your disease under better control.

You are absolutely not alone here we all understand - as an old member (not age) used to say 'We all get it because we've all got it'

Take care

Toni x

Ellen

I just spotted you there @maz59 and wanted to welcome you to the online community.

As frogmorton has said you are now no longer alone with Arthritis. You have a whole community around you who can support you and offer you tips and share their own experience.

Being diagnosed with a long term condition such as Rheumatoid Arthritis (RA) can be a huge shock. You are also worried understandably about your work prospects for the future.

This might be worth reading:

https://versusarthritis.org/about-arthritis/living-with-arthritis/working-well-with-arthritis/guides-to-working/

These pages have been written for people recently diagnosed:

https://versusarthritis.org/about-arthritis/newly-diagnosed/

I also hope your medication kicks in soon and you feel much better.

Do have a look around the forum and join in wherever you feel comfortable you are assured of a warm welcome

My best wishes

Ellen.