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.

[SELondon in reply to Jimminey]

Hello Jimminey,

Thank you for the understanding, will defo look into the link with anxiety/depression and RA, any info would also be very welcome.

Currently my mind is needing distraction from the pain, so I watch just things on youtube and try and not think about things. Started to cook a bit more and clean, which is a big improvement in my mental health. I'm still unable to take my dog out for walks at the moment, due to my anxiety.

I've spent a year and a half on sick leave and lost my job, and feeling low already and then this happens. So yeah the depression is strong, it took me a while to understand that maybe it got worse due to the not knowing what my condition was and that even knowing that the pain could cause so much anxiety and depression.

This is sometimes where my blend of autism comes in not knowing how and why to feel things and also how to react with emotions and understanding. I had to think oh no, I'm getting a life changing diagnosis and actually this might make me feel worse? This I had to feed back to my therapist, which I thought that was 101 for him.

Then its the battles of people saying oh maybe it will just go away and you'll wake up without it. Being positive is fine and understandable, but also having empathy and realism is another. I keep telling people that bitter almonds are a neurotoxin, yes if I ate a whole bag of them then I definitely wouldn't be around. But low levels toxicity is actually not known and not investigated.

But today is better, the support and being heard has helped with the anxiety and depression, and that I'm just a crazy person with pain.

[Jimminey in reply to SELondon]

Hi SELondon, good to hear back from you. And yes, I also find that distraction is very necessary at times - often in fact.

Some years ago I was becoming extremely anxious and depressed and for no apparent reason and after several visits to my GP I went for a load of blood tests and the only one that was significant was a high rheumatoid factor. Then 2 years later RA symptoms presented, I got treatment after a 4 month wait and the RA symptoms receded and the A&D. I was also seeing a psychologist and attended a marvellous compassion focused therapy group (both on the NHS). So, as with all things in real life, I suppose no one factor can be singled out for easing the A&D - or perhaps even the RA.

I read Edward Bullmore's book The Inflamed Mind about how the immune system can directly affect the brain and here's an article by him theguardian.com/commentisfr...

Here's another relevant link everydayhealth.com/rheumato...

I appreciate that the cause of your pain hasn't been established yet. And also that you've been through a lot. But I found that some sort of understanding of what was happening to me helped a great deal and so I'm keen to share it if I feel it might be relevant.

I found your experience with the bitter almonds very interesting - how such a seemingly small thing (though I expect the taste wasn't insignificant) can trigger a whole series of events - so I would be interested to hear how you get on. And do let me know if anything my experience might be of any relevance.

All the best.

[SELondon in reply to Jimminey]

Thanks for the information on depression and inflammation, I didn't realise how they are related in some way.

The bitter almonds are actually a neurotoxin, which after finding out about RA and how it affects the nervous system, it made me realise that it could be the reason my white blood cells are reacting as they are?

Are there more nerve endings in the joints? I'm wondering how and why RA affects the joints more than anything else. Although at the moment I have a strange tingling sensation in my thighs, which I feel could be connected with the RA.

[Jimminey in reply to SELondon]

As well as joint inflammation - which is happily under control with me due to the RA drugs I'm on (although it's been a struggle - hence the appreciation of kettles and toothbrushes) - I also still get needle prick sensations in various parts, especially my toes, and I used to get a lot of fatigue/brain fog which the biological drug I'm on has amazingly dealt with - it used to be thought that nothing could be done about it.

The NRAS produce a number of very good booklets (free I believe) on the causes, effects, treatment etc of RA which I would certainly recommend - although I must admit I only really got into reading a lot about RA after the diagnosis. In retrospect I think I should have been keener to find out more.

And I believe it is well established that RA onset is often a result of a trigger of some sort. I didn't realise that bitter almonds are a neurotoxin, though, but I think that the white blood cells count can indicate a number of things.

[pammi2]

Why are you putting all your pain down to "nhs is stretched"?? you are in pain, they have taken too long to diagnose you. They did not manage your pain proprely , you think they would give you strong pain killers or steriods, sureley they did blood tests. To you ryour appoointment is urgent, you have waiting long enough. you have to stand up for yourself no matter how much pain you re in, you are the paitent, no one under stands pain unless they have the same pain, take it from me,

[SELondon in reply to pammi2]

Hello pammi2

Thanks for the reply, I spoke to the RA to ask why it was downgraded from urgent diagnosis, they said more tests had to be done and that they could do nothing about it.

I tried to get diagnosis from Benenden which is a like a NHS+ but they also declined due to the fact I had my first consultation already.

But thank you for the understanding of no one understands the pain, I definitely feel that way. Sometimes I'm not sure if I should be bothered by the pain or now I question the pain now, whether it is RA or something else? I take paracetamol on top and a lot of the time it doesn't help.

[pammi2 in reply to SELondon]

p ok if more tests need to be done, when are they going to be done, becuase if it was RA that would show up in a blood test, probe them, dont let them keep you waiting, ask them when they going to be done and when you getting results, tell them you are in too mcuch pain and to you it is urgent or you will just be put at the back of the queue

[Beachwalk]

you sure have the same RA symptoms as me, especially the hands and inability to hold things and clean teeth easily. I would say that the almond bacteria has caused the RA to blow up. May have been dormant for a while. As my flare ups are when I get infection. Covid and mosquito infection. Sorry your on this journey with us and I hope you get the right treatment soon

[SELondon in reply to Beachwalk]

Many thanks for your kind comments. I didn't realise RA is so so complicated

[Lhasalover]

So sorry you're having such a time of it. It feels endless especially at the beginning getting the diagnosis and then getting onto meds and waiting for them to kick in. It really is a club you never planned or wanted to be in and through no fault of your own, you were joined up into! It will get better but patience is the name of the game, especially in the beginning, as I too found out oh so well.

Whilst you are waiting for help via medication and the health care system, Id suggest if you can afford to, go online and buy a chargeable hand massager. They cost about £50 and both myself and husband have found them to be a game changer. I didn't expect much, but was pleasantly surprised at just how effective they are. They seem to reset your hands and diminish pain. Great for use first thing in the morning and throughout the day when you feel like your hands need it.

Sending you a big hug and positive vibes on your journey.

[SELondon in reply to Lhasalover]

Great suggestions Lhasalover, will have my fingers crossed that the diagnosis is as fast as possible. At the moment I feel my ADHD is also getting me to focus on the pain all the time. I'm going to get a pain relief management plan discussion with my GP next week. Something which from my initial consultation and discussion never came about. Which the forum and my chat with NRAS yesterday helpfully let me know.

I think after the GP appointment, hopefully some of the pain will be better managed, then I might try some of the other suggestions you have made.

[Lhasalover]

Also forgot to say, try some Isotoper compression gloves. I wear these every night and these also help greatly with pain. Again before using them I was sceptical, but they really do work.