New to NRAS

[SELondon]

Hello, I'm just getting diagnosed with Rheumatoid Arthritis, suffering from pain and its affecting my mental health.

This all started last year when I accidentally ate some bitter almonds and then my GP not believing that this happened and it took the supermarket about 8 weeks before they would confirm that had bad batches of almonds and that they had to be destroyed.

My pain was initially in my elbows and in my hands, so they referred me to a physio to help relieve the pain. I was unable to clench my right hand without intense pain in my hand and even now I can't brush my teeth without holding the toothbrush in a manner that didn't trigger the pain. I did mention that I haven't injured anything and that the pain is in both elbows and both hands, which I thought that if I had injured myself it would be really unfortunate to have pain in both elbows and hands at the same time.

I started taking Ibruprofen for the next couple of weeks, when the pain got worse and my knees and feet started to hurt. Which I then went back to the GP, saw the same GP this time he again referred me to the physio again and then also organised some blood tests this time, including vitamin D deficiency.

The results indicated that I was vitamin D deficient and that I was at low risk of RA. So I got prescribed some vitamin D tablets, although the previous year I was again diagnosed with vitamin D deficiency without the pain I had been suffering.

After this I then got the information that I ate bitter almonds and the pain was still bad, so this was 8 weeks from the initial contact with the GP. Which the originally the GP said if I got evidence from the supermarket then he will reconsider his diagnosis.

I saw another GP who then referred me to RA and said that the information regarding the bitter almonds was too late to do anything about it. The GP confirmed also that the physio mentioned that it was muscular the pain in the report, although I did mention that I did dispute the diagnosis whilst I has having physio diagnosis. He prescribed me Celecoxib which helped relieve some of the pain.

I felt like I was just being put onto another waiting list and after my initial experience of the Surgery, the next day I contacted 111 and asked to speak to another doctor they recommended me to go to urgent care or get another GP appointment.

I decided to go to Urgent care and 111 had me referred due to the situation. Thankfully at last the Doctor understood that I wasn't being unreasonable with my pain, that now the GP has actually put me to the department for a diagnosis and originally that I should had some toxicity tests after the intial GP appointment and the bitter almond, but due to the time the blood tests wouldn't show anything up. He agreed with the GP that it could be RA.

Thankfully after this I got a quick response from the RA had a appointment within the week, whilst also being on better medication for my pain. She confirmed that I had swelling in my joints and that the main concern was my hand which is still suffering from pain and unable to use it. Especially small things like holding a kettle and brushing my teeth. I was offered a steroid into my spine to help alleviate the pain, but was really wary and I think I was hoping that the tests and next consultation could be soon.

Despite the initial consultation taking only a couple of days, I found out later that my diagnosis was not urgent and that I'll be scheduled an appointment in 3 months time. But in that time I'll also have an ultrasound for my hands.

So after everything that happened it made me, I feel really low. It would be about 6 months after my initial pain. I understand that there isn't much that can be done at the moment and that the NHS is stretched. It is just that the pain and sometimes how different the pain feels and not knowing how and why things are hurting.

Last year I also got late diagnosed as Autistic, which I feel not able to understand my own emotions and so at times my pain and getting people to understand the pain I am suffering from isn't always well conveyed and understood.

Apologies for the long post, but I think sometimes it feels better having to type the situation out and that its not just a strange or random thing that happened.

[Deeb1764]

welcome to the forum. RA at the start seems to be a long long process of getting treatments and understanding of what you have. For some once diagnosis sorted they get medication and go forth. For some it’s a tougher path but it’s also about how you best deal with it and what you need to add or subtract from life to make it easier.

Adding ( I use them)!self referral to Wren Project for autoimmune illnesses. Gives me a chance to clear my head.

Looking at overall health what can you change, add or rod to remove anxiety.

Keep smiling as pain is a mind bender and ask for pain mgmt clinics might help might not but least can try it.

Talk to your GP re pain mgmt by medication what they can do too.

NRAS are brilliant call if confused about the plan, info re Ra or their publications etc.

Good luck on this journey and we are here to listen, rant and laugh together 🥰

[Madmusiclover in reply to Deeb1764]

Yes don’t forget the NRAS helpline. They listen and have loads of advice and tips.

[SELondon in reply to Madmusiclover]

Yes I will try and contact them for more info, just sometimes feel a bit of a fraud without the official diagnosis for some reason. But the resources look good and definitely something that might help guide me through the situation with more knowledge

[SELondon in reply to Deeb1764]

Many thanks for the response, i really appreciate being heard as well. I am working myself up to engage a bit more with the GP and NRAS. I did see the Wren project but since I've not had the full diagnosis I wasn't sure whether to contact them.

I actually have a therapist already for my depression and so fortnightly I can get some sympathy and understanding.

But I guess its just not just the RA, but the suddenness of the situation and the debilitating feeling I get from the pain. It messes with the mind more than I expected.

[Jimminey]

Hi SELondon and welcome to the forum.

I think you'll find that you will get lots of considerate support here and lots of useful information - at least that's what I've found over the last few years.

I can well understand you feeling really low after what you've been through. And I can certainly relate to your problems with the kettle and the toothbrush.

In my case I developed anxiety and depression just before and after the RA symptoms 'presented themselves', as they say, but when the RA diagnosis was confirmed and I was put on RA medication (sulfasalazine for me) after a while the physical RA symptoms receded and also the anxiety and depression.

Should you be diagnosed with RA - and it's just a thought - but it has been suggested by a number of well qualified and experienced rheumatologists that the immune response causing the RA may also directly affect the brain - and this certainly made sense for me. I did, though, have to wait 4 months for my first rheumatology appointment, and that was 7 years ago.

If you would want more information on the possible link between RA and anxiety/depression do let me know.

I do hope your rheumatology appointment goes well and that the cause of your pain can be established.