Recently diagnosed and struggling

Abbs06

Hey all,

I just wanted to introduce myself and find out if anyone has any tips or experience to help me 🙏🏻

Apologies for the loooong post in advance 😂

My names Abbie I am 26 and have recently been diagnosed with “Sero negative RA’. It has been a very looong road to get here, but it’s nice to finally have a diagnosis and to hopefully manage and accept what I have... the later taking more time than I thought because everyone seems so shocked at the idea of me having RA at such a young age, their comments making me feel worse and thinking about what I’m going to be like a few years down the line... 🤦🏻‍♀️

For the past year I have been passed from pillar to post as nobody could quote work out what was wrong with me, as bloods came back fine but I had this persistent pain and swelling which started in my elbow and restricted my movements and daily life duties (I have a 2 year old so would find simple tasks such as getting him out of his cot etc... agony on a regular basis) After being sent for tests for suspected blood clots, MRI scans, to the orthopaedics department on the believe that I had an infection in my joint (which resulted in an operation to take tissue and fluids to test) all to come back negative. I was finally sent to the Rehumatologist, who got me sent for ultrasounds on my wrists and fingers, because in a short space of time the pain had spread to my fingers and wrists, I couldnt open doors properly or jars, had lost a lot of my strength, felt bruised, tired and achey all of the time!

My results showed built up synovial fluid and inflammation in the majority of my joints, which has now led to my recent diagnosis of Sero negative RA...

I have worked in the NHS for a number of years and I am based in the pharmacy... So the huge new medication list thrown at me was no surprise it just sucks 😔

My Rheumatologist seemed keen to start me on Methotrexate and prednisolone but we have been wanting to have another child so I knew the risks and opted for Sulfasalizine instead, but for the mean time alongside these 3 times a day and the steroids plus gastro meds I am currently taking about 12 tablets a day, I’m having awful side effects and feel really rubbish about the whole situation. I am a bigger girl already and one of the first things he said to me was about the weight gain from the steroids (which I already knew and dreaded).

My inflammation levels have gone from 40+ down to 18 already, and pain wise I feel better, not 100% but it’s sad to think I don’t think I’ll ever know what ‘normal’ feels like again, just good and better days 🙏🏻

I guess this post is to meet some new friends who have the same condition and problems as myself, think it’ll make me feel better knowing I’m not the only one in this boat 🚣‍♀️

Any advice would be much appreciated, also I would love to hear from any of you ladies who have had a little one? I’ve been told to expect a flare up once I’ve had the next one... 😔 Trying to do as much research into ‘trying to Concieve/pregnancy’ with RA as I can 🙏🏻

Thanks for taking the time to read my story!

💕

jeddison1985

Hi @Abbs06 firstly let me welcome you to the forum I hope you find the information and support you are after from our wonderful community.

I can see from your post that you have had recently been diagnosed with Sero Negative RA and wanting to build your network of people with similar experiences.

I can empathise with a number of elements of your post as I was diagnosed with an Inflammatory Arthritis from 20 and been in active treatment since I was 24. Also as a dad of a young daughter of 22 months I can know the impact this has on your relationship with your children. Obviously given I am a man and with a different condition it is slightly different.

Also, to give you a positive experience given the best you can hope for is good and better days, after a long journey of pain, medication, lifestyle changes, healthier eating and exercise I have had a number of years of no pain, and experienced a period of remission. I hope you can find a balance that works for you.

The site is full of information and I wanted to signpost you to some information that could help get started, from your condition, to the medications and arthritis in pregnancy.

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

https://www.versusarthritis.org/research/our-current-research/our-current-research-projects/rheumatoid-arthritis-looking-at-joint-tissue/

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

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

Please feel free to search the forum for others with similar experiences and I am sure that some of our community will be able to help offer some useful suggestions.

Take care and I hope you get some relief and answers soon.

Thanks

Joe

Ellen

Good morning @Abbs06

Lovey to meet you I see you are wanting a second child and are concerned about your Arthritis. I was lucky enough to develop mine once my children were already school age so didn't have to deal with the baby part.

I see Joe has posted some really helpful links, but I just wanted to share this story with you Charlotte's experience is very similar to yours:

https://www.versusarthritis.org/about-arthritis/your-experiences/your-stories/charlottes-story/

Best wishes

Ellen.

Abbs06

@jeddison1985 @Ellen

Thank you both so much for your lovely replies, I have been having a look through the links you’ve given me and already feel less alone 🙏🏻 ☺️

lindalegs

Hello Abbie,

My rheumatoid started the day I gave birth to my second son and has been with me ever since. I was 27 at the time and I'm now 63. Mine was a massive flare and my body stopped moving over three weeks then me and my newborn were readmitted to hospital to get me mobile again. I know what you're going through.

I would think with today's excellent medication you won't find it too much of a struggle as you say yourself that your pain is now under better control. I can promise you that you will find a new normal for you even if it's a bit different to what you've know in the past. I have two super, married sons with wives I love dearly, three adorable grandchildren and my wonderful husband still by my side through the trials of being a rheumatoid. You will get there just give yourself time to accept and adjust.

Hope this helps a little.

Abbs06

@lindalegs Wow! Your post made me teary, it’s so lovely to hear such positive outcomes and to hear of your journey and beautiful family!

We have no family history of RA so my rheumatologist believes mine could have been brought on from having my firstborn with all the hormone changes etc... 🙏🏻

I just hope this time around once we do start trying and mange to conceive that I can cope and plough through it 🤞🏻

It’s a lot to take in and accept but as I’ve said above, this community has definitely helped and continues to as I read more stories and research more 🥰

Thank you for your reply 💕

lindalegs

Abbie, mine was the hormone swing too, but unlike you, RA was in my family and I had the faulty gene.

My grandmother had rheumatoid but hers started during the menopause. From what I understand women are more prone due to the estrogen levels in their bodies so we're more exposed to flares during puberty, childbirth and the menopause. You may well be okay after having a baby but you already have a rheumatologist on board and their advice and help to hand. I was fine during the menopause so it's not a certainty that we'll get flares at any of the big hormone swings, but it's good to be aware IMO.

You are at a great time of your life with lots of things still to come and my main advice to you is always remember you're a person who has a disease not the other way round. Don't let the arthritis win.