Dealing with Diagnosis

SamBan92
SamBan92 Member Posts: 10
edited 4. Mar 2021, 20:54 in Say Hello

Hi all, just joined and looking for some friends to share stories and advice. Apologies for the length of my story:

I have just turned 29 years old, I have worked the last 12 years in the hospitality industry running around like a crazy person, incredibly active. Last year I took lockdown into my stride and got into the fittest shape I’ve ever been. My diet was fantastic, I even began inspiring others and built a following online.

When we had a short spell of returning to work after the first initial lockdown, I found it difficult to maintain my active 12 hour work days AND my fitness training, and started waking up with pins and needles in my hands and arms daily, then within weeks couldn’t even get myself out of bed. My partner would have to lift me off the couch and open bottles for me, open door handles, help me out if the bath. I was in agony.

With the current climate doctors and hospitals are of course beyond busy with no availability for walk in. After much persistence with my GP I was able to get them to do some blood tests. My grandma has arthritis and I felt it could be something similar. I had my bloods done, and they said “that’s it you can go” I said well what happens now? & the receptionist said “well no news is good news, if you don’t hear from us nothing is wrong” and no one ever contacted me. When I got back in touch with the doctors they said “your bloods came back normal, everything is fine” of course I knew it wasn’t. I kept on and on and the doctors and they prescribed me some pain killers, and eventually referred me to a rheumatologist.

Over a month passed and again I heard nothing. I then received a letter from the hospital saying that the rheumatologist had rejected my referral. I had to keep further on at my doctor before he tried again and FINALLY I was able to get a telephone call with a rheumatologist, weeks after.

The rheumatologist prescribed me some steroids (prednisolone) to trial for 3 weeks, booked me for X-rays on my hands, wrists and feet, and for further blood work. It was almost another month before I received a letter to book these appointments, which were on the 15th December (this was after someone on the phone directed me to the wrong hospital so I ended up in 2 places on the same day). I wasn’t having the best of luck.

The rheumatologist said she would check in with me in the new year after my steroids had finished (I finished them 6th jan this year) - I heard nothing. The prednisolone worked wonders for me and I felt almost “normal” again. 2 weeks later, having still heard nothing, I contacted them myself and they said I was on the waitlist for a call in February. By this point the stiffness and pain was returning. I asked for information on the X-rays and blood work I had in December as I’d still not received any results.

A couple more weeks passed and I received a letter with the results of my tests: “unremarkable” nothing wrong, again. They pushed my rheumatology call back further to March, which I received yesterday (3rd March).

This call was with a different rheumatologist who diagnosed me with “seronegative rheumatoid arthritis” - I had all the symptoms but none of the blood results to support it, negative rheumatoid factor, negative ccp, low inflammatory markers. But he said it was clear from the response to the other medications trialled that this is what it was.

In the space of that 5 minute phone call, everything changed. Big medication words and new information “disease modifying anti rheumatic drugs”, drug education clinics, treatment harmful if I planned to get pregnant, potential hair loss, high risk liver disease with alcohol, that it was rare at my age, I didn’t know how I felt.

I was directed to this site for further information, which has definitely helped a bit to give more information and a better understanding of this new long-term condition I was faced with & how I needed to adapt my lifestyle for the future.

I would love to hear how others dealt with their diagnosis? How has it affected them now? Have you had to change much in your lifestyle? I’m genuinely interested to hear your stories.

Thank you for taking the time to hear mine. X

Comments

  • Shell_H
    Shell_H Moderator Posts: 453

    Hi @SamBan92 - Welcome to the online community!

    I can see you've had a difficult time getting doctors to listen to you and process what is affecting you and your health. Having a fairly sudden onset of pain and an inability to get up and being told that you're fine is not helpful. It does sound like you now have, after a lot of perseverance on your part, a useful diagnosis and you're being given the help you need.

    Seronegative Rheumatoid Arthritis is basically Rheumatoid Arthritis which doesn't show up on blood tests. The treatments for both are extremely similar. Do take a look at Rheumatoid arthritis | Causes, symptoms, treatments (versusarthritis.org) - the information on living with RA is very helpful. We also have a lot of information on DMARDs (Disease-Modifying Anti-Rheumatic Drugs) which will hopefully be helpful.

    I can say that personally, being 37 and having arthritis (Osteoarthritis in my case) it can be quite demoralising. Everyone seems to think arthritis is only for the elderly, so they don't understand when pain can stop you doing things you used to do. However, I have also found that this community and friends and family have really stepped up and cared. It sounds mean, in a way, but it has really helped me to spend time with people who like me for me, rather than anything else. I know the people who have chosen to stay with me despite a chronic condition like who I am, and that's a lovely feeling.

    Things can be difficult - I mention the people as for me it has been coping with having to change people's expectations of what I can do which has been the hardest thing. But arthritis, while it can be serious, is a condition you can totally get used to and cope with. You may have to make some changes to your lifestyle, and learn about changing your expectations, but don't think it will stop you doing everything you want. There are ways around it, medication which helps, and your having been fit to start off with is very useful as keeping fit and strengthening the muscles around your joints is one of the best ways to improve your long term mobility and pain relief.

    As you used to enjoy exercise, do have a look at our information on exercising with arthritis - this is definitely a hobby you can keep up and still do. Don't feel that arthritis will stop you.

    Have a look around the rest of the community and do join in with any discussions you find interesting. We're a friendly bunch of people so don't worry about joining in.

    It's lovely to meet you!

    Shell

  • Jewels
    Jewels Member Posts: 146

    Hi @SamBan92 just read your post what a journey I'm actually waiting for my rheumatology appointment which I think is going to be a wait I have arthritis in my hip and lower back and I'm now getting pain in my right hand and my feet are starting too I'm not as young as yourself I'm 45 but up to a couple of years ago I was walking and bike riding now I'm on crutches it's a big thing to get your head round that's why I came on here there's loads of information and everybody on here is just amazing good luck

  • Lilymary
    Lilymary Member Posts: 1,337

    Your story just goes to show how persistent we need to be sometimes. It's a shame it has to be like that at any time, but more so now; falling ill during the pandemic is really bad timing, myself included. The lack of medical care for non-covid conditions has been a part of the collateral damage in such an awful world-wide situation.

    Both my sister and I have osteo arthritis, but my grandmother had dreadful rheumatoid arthritis, after having been so active all her life. It can be quite a big mental adjustment, so give yourself time to come to terms with this, and learning what you are still able to do, find new ways to do things, replace things you can no longer do with other things that you enjoy. Find different ways to keep up with friends and family, and try to help them understand how this affects you, so that they can be as inclusive and supportive as possible. Your husband sounds like a real star.

    I don't have personal experience of your condition, but others on here have, and they will help you to understand what adjustments you may need to make, including exercises and drug treatments that may help you. And stay gently persistent with the NHS to get what you need. We do have to cut them a lot of slack at the moment, as they are still in a state of chaos, and it's not their fault. But many are now getting back into their stride and picking up from where they left off 12 months ago, and if we don't wave a flag occasionally, they can forget we're in the wings waiting.

  • SamBan92
    SamBan92 Member Posts: 10


    @Shell_H @Jewels @Lilymary

    Thank you for your wonderful words so far, it’s very comforting to read.

    I received a letter from the hospital today for my first in-person rheumatology appointment.. in 3 months time!! So the wait until 9th June will not be a good one.

    Any tips on home remedies/pain relief in the meantime will be greatly appreciated xxx

  • Lilymary
    Lilymary Member Posts: 1,337

    You'll find that 3 months will go very quickly - it's worse not having a date at all, time seems to stretch ahead endlessly.

    Try to pace yourself. Consider yourself as having a fixed (if diminishing) amount of fuel in the tank, and decide what you most need to spend it on. Allow yourself recovery time (aka refuelling time) after a busy day, reconfigure what constitutes "busy". Basically develop the superpowers of Prioritising, saying "no thanks", and "maybe next time", and coming up with more achievable alternatives. Asking for help is also a superpower - build on it.

    Practice with pain management. FInd positions in bed that enable you to have a good night's sleep (I have a bizarre arrangement of cushions propping up bits of me in bed thatworks tolerably well ) , hot baths, hot wheat bags, cold presses, TENS machines, meditation, mindfulness, gentle to moderate exercise, yoga or "pilates lite", and of course, drugs. Work out what works for you. It's pants that any of us are having to deal with all this at all, but you can moderate how badly it affects you, even if it does feel like a competition between you and the RA to see who keeps ahead as the condition changes. It just takes time to get the balance for you right.

  • julie_j
    julie_j Member Posts: 4

    Hi,

    Ive been in a similar position as you.

    I began to stiffen and struggle with movement and pain at the beginning of last year. As the first lockdown came in i had a big flare and after many medications given over the phone by the GP found myself on Amaltrixaline . This made me so poorly on top of the most awlful pain and loss of movement that i eventually did a sit in at my GP and refused to move until somebody saw me. I had to go cold turkey on the Amaltrixaline and got put on steroids ( prednisolone ). I improved rapidly and thought i was over the worst until i had to come off the steroids which was traumatic in its self. As we went into the second lockdown the pain and stiffness came back. Luckily my grown up sons got locked down with me. It came back like being hit by a bus. I lost movement to my arms and stiffness and pain in my knees,groin,shoulders,neck and arms. I couldnt dress myself or manage basic tasks. The fatigue was like wading through treacle and the brain fog made even basic thought processes impossible.The pain was completely unbearable. Again after weeks of fighting to get seen by my doctor i was eventually given an emergency appointment at the hospital.

    I am now on sulfasalazine and am working hard with a private physio to regain movement. Everything i have managed to access has been a fight and taken for ever.(not that im blaming anyone) Getting this sick in a pandemic is a nightmare. I am waiting OT,hospital physio etc as its not back on line yet. My emergency hospital appointment was at the beginning of December with one zoom appointment since then. My GP is monitoring progress and doing blood tests. The sulfasalazine made me really poorly to begin with but has now settled with a gastro resist coating.The pain now appears to be managable which is a huge bonus. I also eventually got diagnosed with sero negative inflammatory arthritis and fibromyalgia.

    I am working hard on managing a good healthy diet,cutting out sugar and processed foods which has helped. I excercise carefully and gently and manage my sleep. As yet i am still home from work and have been since october with no real hope of getting back soon. I am using as many positive self help stratagies as i can . The hospital recently suggested a book called 'The four pillar plan' by Rangan Chatterjee. I have found this a really clear helpful book of ideas . You can get it easily on Amazon.

    I would be really interested to know how you get on and anything that is working well for you as there are times when everything is a real struggle and its good to feel that you are not on your own. Im finding that adaption is the key at the moment and as much positive thinking i can muster. Also taking one one problem at a time and trying not to get overwhelmed with too much information in one go. Also a new supportive mattress on my bed was a godsend.

  • chrisb
    chrisb Moderator Posts: 301
    edited 4. May 2021, 11:41

    Hi @julie_j

    Welcome to the versus arthritis forum. 

    I see that you started to have symptoms just over a year ago, your GP prescribed you Amaltrixaline and subsequently steroids. After some initial improvement, your symptoms returned.  You have now been put on sulfasalazine which has caused additional issues but at least the pain is now manageable. 

    You would like some feedback from others who have experienced a similar diagnosis and how they have managed their symptoms. Well you’ve come to the right place, I’m sure there will be other forum members who can provide you with some valuable advice based upon their own experiences.  

    If you’ve not visited our website then the following links may be of use to you:


     

    I hope you find participating in the forum beneficial. 

    Best Wishes

    ChrisB (Moderator)

  • Lilymary
    Lilymary Member Posts: 1,337
    edited 4. May 2021, 11:42

    Hi @julie_j, my condition is different to yours (OA to hip, recently replaced), and I realise how fortunate I am that my condition can be fixed mechanically. My condition appeared at the beginning of the pandemic too. Rubbish timing eh?

    What a struggle you’ve had, but I really admire how you’ve fought to take charge of it.specially staging a sit in with your GP! It sounds like they’re being more supportive now. Your positive attitude I’m sure will help you find a way to make the best of what’s happening to your body and lifestyle, although I’m sure there will be movements when you feel anything but.

    A lesson I learnt early on from this forum is the power of distraction, taking your focus away from your pain by becoming absorbed in something you enjoy, Also, try to replace everything you have to give up with something new, so your life doesn’t get smaller so much as changing direction.

    there’s also a very good section on this site on pain management, which you may find helpful.

  • gazrobbo
    gazrobbo Member Posts: 16

    Just read your post and feel for you, from being active to be in pain is horrible. No one day is the same. I've got servo-positive rheumatoid arthritis and os/arthritis as well. Ask your doctor to prescribe a small dose of prednisone until your appointment, it will help you through, or ask for some casprin cream, I find that's what it is called, its horrible waiting for treatment, but at least you know on here, other people know what your going through,

  • Flycatcher
    Flycatcher Member Posts: 25

    Different details but similar story, got diagnosed at 30. Don't worry about DMARs, you'll be momitored closely, been there, done that, no trouble!

    Sending you all the hugs! 💐🤗🤗🤗

  • YvonneH
    YvonneH Administrator Posts: 816

    Hi @julie_j and @SamBan92,

    A big welcome from me too. As you mentioned stories can be really helpful and lots of people with arthritis have shared their stories with us so far. here's a link to a few of them

    and I'm thinking you might be interested in research going on at this moment. This is just one of 4 or so research studies being carried out by Versus Arthritis

    Definitely lots of light at the end of the tunnel

    Yvonne x