Feeling lost, trying learn and remain positive.

Richard66

Hi, 58 male, active, physical job, mortgage, married, 2 dogs, loves walking, camping. Simple normal life.

10 weeks ago, woke with sore thumb, 2 weeks later right hand massive, soooo painful, progressed over next 6 weeks spreading up arm and into shoulder, little sleep. Was taken into AE spent 2 weeks in hospital, every test under sun, as now in left hand side as well, and on off right leg and knee.

Told R.A disease, I had a Atypical version that does not show on test results. Looks like most of my past 2 years sickness can be linked to R.A now, where at time no answers and things like post viral fatigue after a cold got better slowly and time work life continues.

Been on steroids for 10 days now and in 3 weeks my 1st outpatient’s with consultant to discuss Methotrexate, and my on going condition.

But I’m still in so much pain, especially from waking at 5am through to 13.00. Today I could hardly move any part of my right shoulder right down to finger tips, even a few mm movement was unbearable. Left side not as bad but uncomfortable and right leg well that was joining in as well.

So that’s me, feeling pathetic, but I’m trying stay positive, reading learning, meals, exercise etc. But I’m struggling with negative thoughts relating to tomorrow, next week, next month even next year. How can I work, produce money for my family, if I cannot even get out bed without looking like I’m 100.
So are my symptoms normal, same as rest of you, does it ease, do you all get it in what seems almost all upper joints.
Finding this forum was blessing, as even if I don’t get one reply it’s a good method of getting thoughts and worries out of your head for while.

Hey suns finally out here in Devon so I will keep hunting those positives. Have lovely day. Xx

Baloo

@Richard66 yes, catching arthritis might suddenly cause being old.

I found it is a drastic change. The steroid will help you through the worst of it but the next worse is yet to come and you may take years to adapt, mostly to do with just the way you normally move around to be more careful.

I asked my rheumatologist am I going to be stuck with this, they are incredibly experienced, and after bulging their eyes for a bit longer than was comfortable said 'no'. I thought what a liar, but on the other hand, things have gotten gradually better, and I am currently off painkillers.

jamieA

Hi @Richard66

Unfortunately I think it's going to be difficult to get answers to your questions. There doesn't seem to be an exact science in treating people for inflammatory arthritis. What works for one person may not work for another with the same disease. I have psoriatic arthritis which is a different inflammatory arthritis. In my case it took a year to get the right combination of arthritis drugs to significantly improve my condition. During that time I relied on anti-inflammatories, steroids and strong painkillers to get through. I'm not cured - and never will be - but I'm significantly better than I was at my worst. I'm able to walk my dog 50-60kms a week - albeit with a limp - and rarely have a need for painkillers.

I hope you get a treatment that works for you quickly.

lou66

Hi I’m new to this so here goes ,I was diagnosed 6weeks ago with RA and I like you woke one night with horrendous pain in arm and before I knew it ,it had spread to my whole body and couldn’t move at all with severe pain in all of body !!I have started on methotrexate which has helped to a certain extent but I know it can take 6months to get sorted .you are not pathetic as it’s scary stuff and I like you am in my fifties and work as a nurse but I’ve been off sick for 3months and I’m worried sick abt paying mortgage etc.it is a very lonely place to be because unless you have RA people don’t under pain etc.so your not alone ,it’s good to talk to people who know what it feels like .My Rheumatologist told me it can take 6 months to a year to get things sorted which is hard going as today I’m back to pain in shoulders arms and hands which is not touched by any pain relief the GP will give me !!they will sort you out but it’s just a slow process ,take care

Ellen

Hi @lou66 welcome to the online Community.

I am so glad you have found just the right thread for you and it's lovely to see your first post being supporting someone else.

This forum is exactly the right place to come for support and reassurance as well as to just vent sometimes.

Being diagnosed with arthritis at any time, but particularly when you are in your productive years work-wise and still have mortgages to pay is huge.

Please do have a good look around the forum now you are here. You can use the search too (magnifying glass icon above right next to 'how to post') if there's anything in particular you want to research.

Best wishes

Ellen.

frogmorton

HI @Richard66 and @lou66 (were these 66ses deliberate?!😁)

Like you both I woke up one morning 'stuck in position in bed in AGONY. Even the sheets hurt me (it was a hot summer).

Looking back I had maybe had some clues - short periods of lesser pain, but nothing like this. For me it was feet ankles and knees and eventually saw rheumatology.

Over the years since I have tried various medications, DMARDs, painkillers and anti-inflammatories until eventually hit on a combination which works for me.

I also feared my life was over (40s two young children and yes a mortgage) but it's turned out ok in the end for me and I hope it will for both of you once your drug regime gets sorted. I found ice packs helped my pain most.

My main advice is to keep moving keep talking (we are ideal as family can get upset or in my case bored I think I became an arthritis bore!), keep doing range of movement exercises (stretches) if you can

I do these:

https://versusarthritis.org/news/2021/october/new-stretching-videos-to-help-keep-moving-and-manage-your-arthritis/

Get reliably informed NHS Versus Arthritis NRAS not Dr Google, and look after yourself. Be kind to yourself. Do things you enjoy like reading watching a film - distraction is a phenomenally powerful tool with pain.

Take care

Toni x

SoniaR

I don’t have RA, but my dear brother has. However I do have OA. . He is now 65 and was diagnosed in his early 30s. Like you, mornings are the most difficult time but he is on lots of drugs to help with the inflammation and he has been able to lead an active life. He’s not only a builder but owns a Sports Bar with his wife and daughter! He has had 2 hip replacements which have certainly helped ease his pain. His two adult children have also developed RA. I think give it time for the meds to work and hopefully, like him, you can start to improve and get your life back. Wish you all the best, and you are not alone.

ladlegirl

Hi All,

I was diagnosed with Fibromyalgia and seronegative RA 5 weeks ago. I have been struggling with symptoms a very long time but they've got worse this last 6-9 months. I had very good care and a lot of tests to finally get diagnosed in the last 6 months.

I've started steroids and Methotrexate 4 weeks ago, I also had a Lidocaine infusion at the Chronic Pain clinic. I have noticed a reduction in my pain, I'm able to move a bit better and I can lie in bed and sleep better but I'm still really struggling.

I work full time in a job I love, busy and requiring a lot of mental stamina. I live on my own with my pets, have a mortgage, I just turned 40 this year.

I took 2 weeks off sick when I first got diagnosed, naively thinking the steroids and Methotrexate would be a miracle cure. I went back to work last week and after the first day I was so overwhelmed, exhausted, unable to think straight or remember anything. Managed 2 more days before taking 2 annual leave.

The brain fog and fatigue is really getting me down. This week I had to come home from work sick on Monday morning because I just couldn't function. How an I supposed to manage my teams or do anything of any great substance if I can't answer an email that should take 2 minutes?!

I'm not really sure if I will eventually be able to manage my symptoms or they will improve or I'll come to terms with it and adapt.

Right now I feel very sorry for myself, upset and frustrated, isolated and worried.

I'm not sure there's anything anyone can say lol but I just wanted to put this out there.

Thank you for reading

Woofy

Hi Richard66.

Welcome to verses arthritis. I also have RA. Went to bed one night couldn’t get up the next day. I have sera positive RA.

I have never known pain like it. Sleep was unbearable at times. I was scared, angry, frustrated, miserable you name it.

But more than all that, so very sad, that the active life I had, was cruelly taken from me. I didn’t want to be around.

Then I found this site.

Most of the folk on here, have been on the same journey, and are still going on a journey at times. Through it all though I have found great support, and encouragement to keep going.

My medication journey is still on going, it does take a good while to find the right stuff.

Meanwhile, be kind to yourself, you didn’t ask for this to happen to you, it just did. Pacing will be your best friend. Learn to rest when you feel you need to. Find a new way of doing the things you enjoy when you are feeling well enough.
keep a diary between hospital visits about the things you are finding difficult, and how it is affecting your wellbeing.

I found hot showers, and hot water bottles helped a lot, I’m still not able to get in a bath so I don’t bother.

Please keep us updated on your progress, we are here through the good the bad and definitely the ugly.

lou66

It is so nice to be able to talk to people who understand as it really is isolating ,I’m so glad I’ve found this site!!thankyou to everyone who takes the time to post as it really does help to know you not alone !how long does methotrexate take to work does anyone know as I’m desperate to get back to work unless I win the lottery !!!!

PJoanne

Hi @lou66

Good to hear the forum is helping you.😀 Here's some info about Methotrexate.

https://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

Best Joanne

Tracytiggs

Thank you for your posts, it's crappy your in pain, but comforting to know that we're not alone. Selfishly it's making me feel better.

I never realised how isolating RA can be, friends you thought would understand, don't. Family you thought would understand, don't when you need them to.

It certainly likes to put us through our paces, physically, mentally and emotionally.

Jackson

@Richard66

Very similar history: 1997, male, 51, mostly vegetarian, runner 40-50 miles/week, provincial (Canada) union rep primarily negotiating collective agreements, hectic job, stressful at times, lots of travel, two kids. Woke up one morning with severe shoulder pain, almost passed out.

Family Dr. prescribed Dmards with referral to rheumatologist. Following examination and blood work diagnosed with severe RA. She sent me for a second opinion which confirmed. Absolutely stunned hadn't a clue what RA was. Spent a hellacious year trying various drug combinations with methotrexate as the primary drug available at the time (Canada). Pills didn't work, soon switched to injections. During that year every joint inflamed, barely slept, walked like a 91 year old, some days had to have wife help me dress, severe fatigue. Stubbornly refused sick leave, luckily not a physical job. At the end the year and before the MTX slowed the progression, left with mild damage to toes and fingers. Had occasional steroid injections for temporary relief. Began running after one year and life felt much improved with this new 'normal' but still evidence of disease progression. Continued doing monthly blood work to track.

Mercifully biologics became available, switched to Enbrel 1999 (?) and inflammation progression completely halted, until it didn't. In 2002 switched to Humira and continue to use until recent switch to biosimilar Idacio with no change in effectiveness after nine months. Time will tell, neither an optimistic nor pessimist just a pragmatist. Incredibly fortunate to have the same rheumatologist for 27 years as she was in the beginning stage of her career. Fiercely determined, no-nonsense and direct but always compassionate advocate and up to date. Made it clear that despite my sense of pessimism (at that time) she had no intention of giving up. Wife and kids never wavered in their support.

Other family, friends and colleagues garnered an immediate well of sympathy until too many became 'experts' in a disease they had no knowledge of. Comments like I'm a vegetarian must have been the cause, too much running, well you look fine (after a year) so can't be all that bad. Others, without knowledge, insisted that RA can be cured by 'natural' means and I was poisoning myself with drugs. Realized a subject best not discussed.

Everyone's history with RA will have similarities, variations and dramatic differences. I've been lucky. Retired in 2008 and able to stay reasonably active even with the irritating aging process. Hopefully you and your medical team are able to achieve success.

Apologies for the length.

@Jackson from Toronto.

Daydreamer123

Hi peeps,I feel arthritis has changed my life,but just trying to learn to adapt,I go to a chair exercises class and sing your pain away which helps alot best wishes xxx