Recently diagnosed, how does the future look?

Shattered

Hi everyone, or anyone.

Bare with me please, perhaps I just need to get this off my chest, and perhaps there are members out there that can offer some advice.

One night in late October 2023, I went to bed, as normal, ready for another day at work which I needed to be awake for by 3:30am. At around 2:00am I awoke with very painful fingers. Initially I thought I'd perhaps turned onto them in the night and twisted them, or something, but I called work and said I would be in. My fingers had swollen quite a bit, actually. Anyway, the GP took a look, thought perhaps it was gout, which I'd never heard of in the fingers before, but hey, I'm no Doctor, so why question this. They are professionals in their field, I am in mine. After being informed to take anti-inflammatories, which worked for a little while, the swelling returned with a bit of a vengeance. The hand had swollen up and this was now heading close to December 2023. I'd gone through a number of anti-inflammatories getting stronger and stronger, each starting off well for a few days, but knocked quickly back down. By the beginning of December, I couldn't work no longer. Which was hard for me. I love my job. I work 12 hours a day which fly by, it's an active role, even a little climbing in and out of highline HGV cabs because I am a driver trainer. (There's way, way, more to my role than just that, though.) So now I'm out of work on the sick. I can barely walk because my ankles have ballooned, my hands look like boxing gloves, and over a period of a couple of months, I've lost muscle content in my arms to the point where I could barely lift a 4pt bottle of milk. Most the time I couldn't even open the bottle if it was new anyway. In fact, there was very little I could do for myself now. It wasn't until March that I was diagnosed with rheumatoid arthritis seronegative factor, which doesn't show in blood tests, apparently. All I know is all my tendons in my arms and legs where inflamed and even the morphine I was on wasn't giving me relief from pain, though I'd have hated to see what the pain would be like without them. I haven't slept in my bed since mid - late December. I can't lay on my sides because of the pain, and when I lay on my back, (now this is weird,) my arms would go to sleep, so I'd end up with tingling in them as I'd the circulation had been cut off. Even now, after the initial steroid injection, starting methotrexate and hydroxychloroquine and on a course of reducing steroids, I struggle to get upstairs, I have to sleep sitting on the sofa surrounded by pillows and cushions, as well as rest my feet on them for comfort to ease the pain. It just seems there's no end and my poor wife has to drag me out of the sofa half the time, as best she can considering I'm a 6'5" guy that weighed originally 123kgs but about 116 after recently putting some weight back on. That's the physical side of things, but the mental side has taken a real beating, too. I think I'll lose my house. My wife and I married 11 years ago this August, I was 49 and she 44. At 53/48 we took a mortgage because private renting was forever increasing. The recent interest rates increase pushed my mortgage to over £1100 pcm and I really fear losing our home. It's nothing fancy, just the repayment term that makes it expensive.

Yes, I am very depressed. I probably won't be able to continue the job I loved. I'll probably lose the house. My wife will forever have to mother me. But even so, suicide is not an option. I had an out of body experience in the late 90's so noooooo freakin' way am I going along that route, but death does often, too often, run through my mind. It's a long term solution to a short term problem, even though I know I'll have this for life. Still I struggle with everything, opening milk bottles, getting up and down stairs, getting off the sofa, bathroom and toilet issues, (poor wifey).

Things just look so bleak at the moment and I don't know what help is available if any. I doubt anything will help me, but my wife, perhaps.

Apologies for the doom and gloom, just needed to get a fraction of this off my chest.

Trish9556

Hi @Shattered

I don't have experience of RA so can't comment on that side I do have a lot of excruciating pain with my OA. I also don't sleep.

Life is a pitch when you're struck down suddenly with something like this and you soon learn to be assertive with medical professionals telling them what they're doing isn't working and you need help now.

I'm sure you will get excellent advice from people here with RA. Try and stay positive. I know how hard it is.

Good luck

Love n hugs

Trish Xx

Naomi33

Hello @Shattered and welcome to the online community.

Sorry to hear all your concerns but I can assure you, you are not alone.

My RA came from nowhere after living and working a very active life.

I like you could not open milk bottles (used teeth) bad idea but needs must at time as live alone.

I like you could not sleep in bed and have tried every which way imaginable still have bad nights but now just sit listen to audio book and relax and eventually fall asleep.

I have been on Hydroxychloroquine for a year now and steroid injections as top ups when I have flare ups. Managing condition but discussing Methrotrexate with consultant at the moment to start injections soon.

I sought financial advice from local Welfare Rights team who assisted with forms and guidance maybe worth a call for you ?

I joined support groups as I felt alone and they helped guide me through too👍

Adjusting and managing condition is very hard but a positive attitude is good.

The following links maybe of use to you……

https://www.versusarthritis.org/about-arthritis/living-with-arthritis/financial-support/

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

Take care and keep posting … @Naomi33

Emmasknackeredjoints

@shattered hi , sorry to hear your story, your symptoms have come on rapidly and totally changed everything for you. No wonder your shattered!

I struggle with the pain to but it's more what the condition takes from you that is hard to accept. Pain can often be managed to a degree, but losing your job, salary , home whilst being in pain is something people don't understand.

I'm sure your GP would ref you to mental health if you asked for this. Although I know some of us prefer not tohave this kind of refferral.

Sleeping on the sofa won't be helping your pain at all, can you sleep in bed with v pillows or the bear hug pillows . They may help your sleeping position.

Have They ruled out PMR also? Just a thought with all your muscle pains.

Hope you get some comfort soon. Keep us up to date.

mosborn11

So I have zero negative inflammatory arthritis (most likely RA) and my experience has changed a lot.

I first started noticing pain back in November, and saw the consultant in January. When I went to see her I couldn't stay up past 8pm, couldn't cook for myself and could barely dress myself. I was in a bad way. I couldn't even hold a book open, and would sleep for days at a time.

I was initially put on steriods, which weren't very helpful with the pain, but did bring the swelling down. They they put me on Celecoxib and Hydroxychloroquine.

By Mid March I was able to cook for myself and even do some stuff that I used to enjoy like art. I could do basic tasks like taking the bins out and loading the dishwasher. I slept most of the weekend but was actually able to work full time for 8 weeks from home (I normally work part time from home).

Unfortunately the Hydroxychoroquine side effects got to me and I've had to come off them and go on Sulfasalazine instead. Coming off the Hydroxychloroquine was the hardest thing for me mentally as I felt like I was undoing all the good work. The reality is though, that it will take a while for the HX to fully come out of my body, and hopefully the SZ will take over by that time. I'm now able to walk to the end of my road and back which is a huge achievement for me. Although it's important to stick with the drugs, it's important to have a good quality of life too, and I would have had no quality of life on HX.

It's not an easy road, but I am proof (as are many people) that the drugs really can make a difference. I have some hope that once I find the right combo (I've still got to go on a second DMARD at some point) things can and will get better. It's also okay to take the very little wins, like being able to walk to the end of the road and back, and being able to stay up past 8pm.

Speak to me in a week or so and I may feel different 😂 but hopefully, although it's a difficult road, it's not an impossible one.

Shattered

https://community.versusarthritis.org/discussion/comment/720750#Comment_720750

Hi Naomi.

I hope you are well. I know I'm not alone in this, and before actually experiencing all of the pains and incapacitating effects of the disease, those I know or knew that had RA developed it gradually, over a long period. It disfigured hands and arms, as I recall, so I really wasn't expecting this to be the outcome. I seriously take my hat off to those that plough through the day struggling and getting on with it, and to be honest, as much as I have been in constant pain, more than I have ever experienced in my life these last 4, 5 months now, I can deal with that, (sit and suffer), but it's the mental effect, the fear of losing what I have worked hard to acquire. I've always been a DIYer, too. Everything, carpentry, brick laying, (in a fashion), plumbing everything I've always done myself. Now... I can't even hold my knife and fork at dinner properly without dropping them half a dozen times. It's so ridiculous that at times I can't help but laugh. But that often leads to a tear or several. Because now my wife not only has her mother to contend with, she lives with us as well, but she has me too. As for the audio books, oh yeah… 32 I've gone through this year alone. Sometimes it's a great way to nod off for a little while, but I always wake feeling more pain than before I slept. The steroids have reduced the swellings around my body, ankles, knees in particular, and to a small degree in my wrists but not my fingers, and I still struggle to open my fingers wide enough to take a standard mug of tea or glass of water, and that is a two handed job to ensure I don't drop it. Yes, before anyone asks, the mugs do have handles but my fingers won't close enough to grip it firmly. What I've found since the swellings have reduced, though, is that my joints crack more often when bending them. Elbows especially, but my neck, too, when I raise or lower my head, or turn from side to side, though thankfully, this isn't so often, just a few times a day.

I do try to be positive. But it's hard when the future, at the moment at least, looks so bleak.

Thank you for the links, I will have a look at those. To be honest, I've always worked and had enough to get by on, and benefits always seemed a bit daunting to me. Even on the rare occasions when I was out of work I wouldn't claim anything, but my circumstances were different then. I knew I wouldn't be out of work long as a truck driver.

Anyway, thanks for responding. I really wish that this site was for something else, though. A gardening or photography group, anything but this, and I really feel for anyone that is here having to deal with this disease, now.

Shattered

https://community.versusarthritis.org/discussion/comment/720787#Comment_720787

Hiya mosborn.

I hope you are well. One thing I've experienced ever since all this began and with every medication prescribed is that for a couple of days I'd begin to feel an improvement, but then a quick decline. Everything from the anti-inflammatories to pain killers, and now the steroids. Everything works for a few days then it's as if I become immune to them. I'm on morphine and I really wonder what the pain would be like without them if this is how I am whilst on them.

Did your condition hit all joints? Mine started in the fingers, then the hands and wrists ballooned, as did my toes, feet, ankles, and knees with some pain and discomfort in the groin. A feeling of the bones needing to click into place in the groin area really, the same as my neck and elbows. My shoulders, I have no idea what's going on with them. I can barely reach behind enough for my wife to put a jacket on without it being ridiculously painful. I can't even reach the back of my neck, and if I'm lucky, on a good day I can actually just about reach my ears should they itch. I'm bald… can you imagine the look my wife gave me when I asked to borrow her hair brush? It was only to scratch those itches 😂, so she bought me one😒.

I am happy for you, though, that you've regained some independence. I can't walk very far, usually the hospital visit wipes me out because it feels like I'm walking on golf balls. Anything I can do one day that I couldn't the day before is always a win, but then knocks me back down when I can't do it again the following day. I'm just waiting to see what effect the Methrotrexate and Hydroxychloroquine will have when they eventually kick in. Fingers crossed I will be able to do some of the things I could before.

Take care and good luck. Thank you for responding 😊

Shattered

https://community.versusarthritis.org/discussion/comment/720781#Comment_720781

Hi Emma and your knackered joints. I love the name but sadly it reflects our condition or attitude.

Thank you for mentioning PMR. I have no idea what it is without looking on Google, but I will mention that next time I see or actually speak to the rheumatology guys.

I've tried sleeping in the bed and even bought an additional 6 pillows to help support and comfort me, but whenever I do manageto fall asleep ON the bed, (because the weight of the duvet was too much for me), I end up feeling like I'm made of stone and hardly able to move for a good while after waking.

I'll keep upu posted about the PMR. Take care, and thank you for taking the time to reply

Shattered

https://community.versusarthritis.org/discussion/comment/720749#Comment_720749

Hiya Trish.

Thank you for your reply. Initially I was bounced from one Dr to the other when first raising this complaint with them, but then I found that 1 took note of what I was saying and actually seemed to give a damn, so I have stuck with her since.

I'll keep posting updates.

Take care Trish, hugs back even though it would most likely feel it came from a penguin.