Can anyone offer advice?

CoralineB

Hi everyone, I'm brand new here and out of sheer desperation, looking for some advice or guidance. I'll try to be as brief as possible but my journey has been going on for over 12 years, so I'll try to be concise. In February 2012, after a nasty 'flu infection that left me with a lung infection (MRSA), I develped a very painful little toe on my left foot. The toe was really red and swollen and I couldn't bear anything touching it and I wore sandals all winter. The pain gradually spread through my body, I started losing my hair and my fingers swelled up like sausages. I felt really unwell, I was tired and exhausted and had no energy and felt like you do when you have the 'flu, but without the cold-type symptoms. I did have a cough that never went away (which is how the MRSA was diagnosed and treated). After 2 years of going back and forth to the doctor and feeling like I sounded like a crazy person, I was diagnosed by a Rheumatologist with fibromyalgia and very low vitamin D and discharged. Since then, I have had the most bizarre range of symptoms, ending up in A&E with suspected temporal arteritis (it wasn't) and a diagnosis of Sjogren's Syndrome ('probable'). Since then, I've been diagnosed with lipoedema, degenerative cervial spine disease and in 2020, was found to have significant osteoarthritis and cartilage loss in both knees. I'm having my first replacment this week. I have had to battle to have replacements due to my 'young' age, even though my arthritis is classes as 'severe'. I have issues frequently with my feet (significant pain in my soles and heels, sometimes toes), wrists, finger and thumb joints, the heels of both hands, skin issues (last week diagnosed with psoriasis) and frequent eye bleeds (I assume episcleritis), random rashes behind my ears, around my hairline and itchy, painful 'lumpy' rash on my hands, which I had been told was eczema, until last week when a GP told me I had psoriasis.

In 2021, I saw a Rheumatologist who was really keen to listen to my history, the issue with lack of blood markers and she undertook scans, which led to a diagnosis of 'undifferentiated inflammatory arthritis'. I was prescribed Hydroxycholoroquine and this seemed to help. However, I have since relocated to another area and the most recent Rheumatologist I saw in 2023 said he disagreed with the previous diagnosis, stopped my medication and discharged me. I should add he didn't undertake any tests or scans but reviewed previous blood results. I was very down after this as it had taken so long to get anywhere with the variety of health issues I'm experiencing. I have asked for a referral to a new Rheumatology dept which is underway. After 12 years of never-ending painful symptoms that have impacted my life to the point where I had to reduce my working hours to part-time, I now can't work at all. I should add for context, that this started when I was 42 and I'm now 54. I am at a loss as to know what to do. I live every day in pain, I struggle with basic tasks most of the time and I don't know how I've got through the last 12 years, other than I have an amazing husband who has been with me and supported me through it all. I have periods when symptoms are better (usually in mid to late summer) but this year, that hasn't been the case. I'm hoping the new Rheumatologist will be helpful but I'm actually scared that I'll be sent away again and told there's 'nothing wrong'. Has anyone else had a 'painful' path to diagnosis and can anyone recommend a Rheumatologist who might be willing to consider that my previous diagnosis was correct? Due to the psoriasis, I'm wondering if psoriatic arthritis is likely? I'm really concerned that my joints seem to be degenerating quickly but all my blood tests are 'normal'. Thanks so much for reading through my long post.

Woofy

Hello and welcome.

I am so sorry you are having such a difficult time. It sounds like you might have R A, as well as other conditions.

I took quite a while to be diagnosed with RA, because my inflammatory markers were not particularly high.

However as the months went by, my symptoms worsened, and after some ultra sounds on my hands I was diagnosed.

I have tried a few a few different meds, all of which hadn’t helped. Recently put on Methotrexate injections, and a daily tablet called Leflunomide. This has helped me stay off steroids for the past twelve weeks, which have been the only treatment that has worked.

Make sure when you get your hospital appointment, that you tell them how much this has impacted your life. I really hope you get the correct diagnoses soon.

CoralineB

Thank you Woofy, for the welcome and sharing your experiences. I'm sorry you're also having a difficult time. It's good that you've been prescribed some medication that has negated the need for steroids and is giving you some relief but I know what an up and down journey this can be.

I'll certainly take heed of your advice. I'm notoriously bad at asking for help and hate to admit that I'm struggling. I hope your medication continues to help you manage your symptoms.

annabanana

Hi @CoralineB and welcome to the community, thank you for joining us 😊 (btw, love your username).

I'm sorry to hear you're having such a difficult time, luckily you've already gotten some good suggestions! I've attached some other links which you may find helpful reading before your next appointment. I had something similar happen in my diagnosis journey, for years doctors either told me that my RA was tennis elbow or simply "hormones" 🤦‍♀️.

hopefully these articles are useful for you (I can personally vouch for the Arthritis Tracker, it made remembering my exact symptoms a lot easier) and I hope things improve for you!

https://versusarthritis.org/news/2023/june/how-can-i-prepare-for-a-doctor-s-appointment-if-i-have-arthritis/

https://versusarthritis.org/about-arthritis/young-people/arthritis-tracker/

https://versusarthritis.org/news/2022/july/how-to-get-a-referral-if-you-think-you-have-arthritis/

CoralineB

Hi, annabanana... I think your name tops mine! 😄 Thank you for the links and the tracker is a great idea! I think describing pain to someone else us always difficult and one day's symptoms blur into the next. Whilst it's not 'good' to know that you suffered for a long time before getting a diagnosis, it does help me to know that you got there in the end! Thanks for sharing 😊

jamieA

Hi @CoralineB

I was diagnosed with psoriatic arthritis(PsA) in late 2020 at the age of 65 having had psoriasis(PsO) from the age of 15. This was after a bout of covid and a succession of recurring chest infections. The diagnosis was done by the head of 2nd line A&E who had previously been a professor of rheumatology - after I'd been sent there by my GP regarding my swollen knee then swollen hands.

Apparently about a third of people with psoriasis go on to develop PsA. Also about a third of people with PsA develop enthesitis which I also have. Enthesitis is the swelling of the areas where your ligaments and tendons attach to your bones. Common areas are elbows, wrists and heels and can be mis-diagnosed as tennis elbow, carpal tunnel and plantar fasciitis. Swollen fingers can also be a sign of enthesitis.

In the year after I was diagnosed with PsA I was admitted to hospital 6 times due to pneumonia, heart issues and overwhelming pain from my joints. My rheumatologist is at my local hospital which doesn't have an admissions ward so each time I was admitted it was to the main hospital in the city. So I was seen by a whole host of rheumatologists during these admissions but wasn't their patient. I was given a whole host of differing diagnoses - osteoarthritis, gout, ankylosing spondylitis, polymyalgia rheumatica and PsA - it doesn't seem to be an exact science. Part of the diagnosing of my PsA was raised CRP and ESR levels in blood tests as well as an MRI scan of my sacroiliac joints which apparently are affected by PsA. Rheumatoid factor blood tests were normal. Asymmetric joints affected are another sign of PsA apparently.

The first rheumatologist I was assigned to was lazy, unhelpful and quite frankly rude. I realised I needed to be more assertive in my dealings with medics. I wrote to him stating if he wasn't willing to help me I wanted to be assigned to another rheumatologist. I also wrote the same to my GP. I changed rheumatologist and the difference is significant - she is far more understanding and tuned in to my care.

I'd suggest that for your next appointment write down all your symptoms - I keep a diary which I update daily. Write down the questions you want to ask - take 2 copies and hand one to the rheumatologist. Take a notepad to write down the answers. Take someone with you so you don't miss anything. Be as assertive as you can be.

I hope you get the diagnosis and treatment you need quickly.

steven_westwood1958

Has anyone on here with Rhumatoid arthritis developed
Vasculitis I’m 65 had arthritis for about 15 years and now been diagnosed with Vasculitis and it’s quite scary been on loads of biological drugs which were self injection or infusion my last biological tocilizumab which was administered both injections and infusion seemed to be a wonder drug but after my 5th COVID jab it seemed to not work as well and have developed a numb foot and hand after numerous tests and biopsy’s I’ve now been diagnosed with rheumatoid vasculitis.

stickywicket

I'Ve neVer heard of the rheumatoid veesion but I know RA can cause nasty other things. In case it's of help here's what the trusty NRAS say https://nras.org.uk/resource/rheumatoid-vasculitis/

Lopati

https://community.versusarthritis.org/discussion/63180/can-anyone-offer-advice

hi - your story is so awful. I’m sorry that you haven’t found the right rheumatologist to help you. I’ve had a similar lengthy journey and several changes of diagnosis. I’m now on my 4th biologic drug and nothing seems to be working. I’ve had surgery on my right hand 2 years ago and I’m due for some more soon on the other hand. In all of the treatment I’ve had my disease continues to progress. So I feel your frustration. I really hope you get a referral to someone who investigates things properly. We all deserve that. I’m looking for some social support through this group as I’ve isolated myself terribly over the years in spite of working. Good luck in your journey😊🙏🏼

Woofy

https://community.versusarthritis.org/discussion/comment/725932#Comment_725932

we will all support you on here. 😊

Lopati

thanks woofy, I appreciate your help🙏🏼

CoralineB

Hi everyone,

I so appreciate all the comments, advice and sharing of your own stories. It really helps to know I'm not 'alone' on my journey.

I came out of hospital today following knee replacement surgery on Thursday. It's been quite tough but I'm through the worst of it now (I hope!). I've typed up my medical history to take to my rheumatology appointment in November but I'm also going to write an 'impact statement'. The last 12 years have been tough and I've lost such a big part of my life to this 'disease (whatever that might be).

Lopati, I totally understand you isolating yourself because I've done the same thing. I hope I can offer something to the group as well as be supported. I am by profession, a counsellor, so I'm very good at supporting others but not quite as good at taking the same care of myself. But that's changing right now! Thanks everyone. What a lovely welcome 🤗

RuthieB

Hi Coraline,

I'm new here but just wanted to say how sorry I am to hear what a tough time you've had trying to get a proper diagnosis. It must have been a very difficult time for you.

In desperation I've booked a private appointment because after 2x years with symptoms I still dont have a diagnosis - also (unbelievably!) got discharged. I'm going to be seeing Taryn Youngstein at the Cleveland Clinic in London in mid September. I also have a new NHS referral, and have heard good things about that.

I hope your recover from your recent op goes OK. You deserve the right care and treatment & hope you have all that soon,

Ruth

Post edited to remove hospital name as we generally do not name any hospital or medical professional - sorry. Hope your referral goes well. Peter (Admin)

CoralineB

Thank you, Ruth. It seems it taking years to get anywhere without being dismissed and discharged isa challenge in itself! I wish you lots of good luck with your new consultant. Please do let me know how you get on. The community seems to be a lovely, supportive place to be 👍

Lopati

I hope that now almost 1 week post op you’re starting to feel better and mobilising ok?

Thanks for connecting with me. It’s so nice to know that someone understands. I have some surgery planned too. 2 pip joint replacements on my left index and ring fingers. The consultant is hopeful I will have reduced pain and improved flex ion so I’m really looking forward to getting this done.
wishing you the best continued recovery from your knee replacement.

Keep us posted!

🙏🏼

CoralineB

Hi everyone,

I wanted to check in and thank everyone for their helpful advice and support. I'm now 3 months post-op after the partial knee replacement. Apologies for being absent for so long. The first weeks of recovery were extremely testing but week by week, I'm getting better. I still have a long way to go as yet but going in the right direction. As I have my first rheumatology appointment tomorrow with a new rheumatologist (after the last one saying there's nothing wrong with me, taking me off DMARDs and discharging me), I'm stressing a bit about tomorrow. It feels like it's my last chance to get the help I need.

Lopati, thanks for checking in. I wasn't in a good place 1 week post op and the first month was pretty difficult but compared to then, I'm so much improved! Happy to share experiences for anyone else facing a knee replacement. I hope your surgery was successful, assuming this has now happened?

RuthieB - your situation sounds similar to mine in some ways. It seems being discharged with multiple symptoms over more than a decade isn't uncommon! How did your appointment go? I hope to hear good things have happened since for you 🤞

Woofy, Annabanana, JamieB and everyone else who's commented, a sincere thank you. I appreciate you taking the time. I have also isolated myself to the point that I feel I've become almost a hermit. I'm not good at asking for help or letting people know I'm struggling, so I manage mostly on my own, with my husband and my animal family, who are the best, so I'm very lucky on that score.

I hope you're all doing well. Take good care all… I'll post an update after tomorrow's appointment 😬👍️