Hi I am New to the community

Lizebeth

Hello, I've just joined the online community as I had a diagnosis of Rheumatoid Arthritus some time ago.

I'm currently going through what i think is a flare up of RA but my treatment back when I was diagnosed turned in to such a mess I ended up compleatly bewildered and eventually opting out of any treatment from Rheumatology.

It wasn't because i could not understand the diagnosis it was something slightly more embarassing than that, it was because the Rheumatology department I was refered to was in total chaos and staff spent what little time I had in appointments arguing with me about why I was there, I had assumed they would talk to me a little about my Arthritus but instead they had an almost production line going of patients in, take methotrexate, go home.

As I have another disability (I am Deaf) they could not understand why I could not use the rheumatology phone line ( I know I sound crazy here but they really would not have it that my deafness meant I could not ring them up even when I explained that getting someone else to call on my behalf would be rejected because the NHS won't allow that due to patient data/confidentiality rules, so no Doctor could call me back- and they have zero idea of how to use the text relay service)

Anyway after going through the entire nHS complaints service…I ended up with truthfully a very stroppy consultant who made me feel like some kind of deliberate saboteur of NHS services rather than a very tired arthritic Deaf person who just wanted someone to encourage me a little and ofer me some education and medical advice.

I don't really understand my own symptoms, I was diagnosis on the basis of antibodies in a blood test, I got as far as having scans of my hands and feet which showed the joints were fine

but mainly I have outbreaks of randomised pain that are preceeded by a sharp down turn in mental health, I get very depressed for a few days then comes pain in some area but not a specific joint during this I am so tired its scary, then after maybe a few days of aching pain comes a sharping of pain and movment becomes difficult if it involves that area of my body this takes about 3-10 days to go off and I have a day of bursting in to tears at nothing ( I welcome this now as I recognise it as a sign its all passing off)

and then…its like nothing ever happened and I'm back to normal-ish.

What I'm hoping to find out is- is this recognisable to anyone as Rheumatoid Arthritus or am I cooking up another chronic illness that isn't RA? and I just had antibodies one time in a blood test?

I am so bewildered by my own symptoms and diagnosis.

apreciate that no one can give medical advice or anything but just hoping I can get a better understanding of whats going on with me and possibly what to do about it.

chrisb

Hi @Lizebeth

Welcome to the versus arthritis forum.

Reading your post, it’s obvious that you’ve been through a very challenging time since being diagnosed with RA.

I hope you find that you’ve come to the right place seeking input from our members many of whom are living with RA themselves.

No doubt you will be aware of our main website where there’s a wealth of information about RA but just in case you haven’t, here’s the link:

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

I'm sure you'll receive some useful input to help you better diagnose and manage your symptoms.

Best Wishes

ChrisB (Moderator)

Lizebeth

Thanks Chris, I am having a deep read of the site currently, its very informative.

I've also discovered I have Raynards phenomenon as for the past year my fingers keep going white and it is linked to Arthritis!! but also to Hashimotos disease which I forgot to add I have been diagnosed with.

(I'm on levothyroxine)

I'm impressed with how much knowledge people have about their conditions here on the site, reading through a few posts has shown me I am far from alone in feeling overwhelmed by it all.

Currently wondering if I should go to my GP and say, I'm not smart enough to have Rheumatoid Arthritis it requires too much learning and I haven't got time for all that, I insist you award me a less time consuming and less complex medical condition. 🤣

iwannerbeme

Hi Lizebeth.

Welcome to the group

It sounds awful what you have been through-trying to get professional experts to act in a empathic and informative way. They are also supposed to make "reasonable allowance" (I cant post links here I dont think but you could look it up if you needed to) for disability's. Honestly parts of the NHS seem totally broken. It must be so frustrating for you. Ive been very lucky with my own consultant team but I am in the middle of a complaint helping someone else anmd its not for the faint hearted is it! Hope you continue to find useful info here. xx

iwannerbeme

"Under the Equality Act 2010 (and the Disability Discrimination Act 1995 in Northern Ireland), people who are deaf or have hearing loss have the right to expect reasonable adjustments to be made if they face substantial difficulties accessing NHS services."

Lizebeth

Thanks for the reply iwannerbeme :)

In 2017 the NHS brought in the NHS Accessible information standard and said it was non arguable after the panorama TV expose of the winterborne view (hospital)

"The government responded with a review and a programme of action to transform services for people with learning disabilities and/or autism, known as "Transforming Care"

It covers Deaf/hard of hearing hearing loss ect, and should mean that the entire NHS is supposed to provide me with Email acess/ signing/lipspeakers etc for every appointment and also that I should only have to tell one member of staff that I'm deaf and then that information should follow me through out treatment.

The issue is- there are absolutely no consequences for staff if they ignore the Accessible information Standard and hardly any of them have even know about it, its not taught in training.

Most of the time the actual people I have to deal with have never booked a signer before, have zero idea how to do it or how to charge it to the departments budget, they don't know how to do a text relay call so reject it if I try to make one as they think its some kind of scam call. (had it rejected twice today by my GP surgery and reception told me when I had to go down there, oh its our system, it doesn't recognise Text relay, but, the call went through and was rejected by the person who answered the phone, so I'm then put in the position of do I argue back that it wasn't the system?)

Then there is the massive fear from staff of "Racism" because I can't understand well enough to lip read anyone with a strong accent, but if I say I need someone who doesn't have a strong accent, staff practically faint on the spot as they don't know how to report this back to the department without understanding its not racism against any person its lip reading, it works by recognising known lip shapes so someone with a strong norfolk accent is as much as a mystery to me as someone from overseas.

Being Deaf isn't a problem really, its the reactions to it that make it so frustrating.

and then even if all went as it should there's still the problem of I don't know the BSL signs for medical terminology

we don't tend to go round in the Deaf community asking "Hows your Haemorrhoids doing today then?"

Strange thing is there is a link between Deafness and Arthritis, so I thought at the very least the Rheumatology Department would be more prepared for the occasional Deaf person to wander in, and they'd have a better understanding of it all, but no such luck.

Anyway I ramble on when writing as its such an accessible form of conversation for me but I'm aware it can be a bit of a text wall for others to wade through.

I've got an appointment to see someone at my GP's surgery in April!! so I've just got to hold it together until then

which is at least a bit more progress than yesterday.

Arthuritis

@Lizebeth It sounds like you do have autoimmune, but having high ACCP & RF does not preclude other similar concurrent conditions.

Some of what you describe sounds a bit like vasculitis perhaps brought on by an allergenic trigger. Have you looked at your blood test profile for the last 12-24 months? You should have these regularly, and in particular check Eosinophil counts, CRP & ESR, when these are elevated, do they correlate with your symptoms?

Do you get “brain fog” when the flare comes on?

Instead of your hands and feet, do your hips, or knees or elbows get hot/painful/inflamed?

Are large muscle groups affected eg thigh? Backside? 😉

Classic RA gets your hands, feet, wrists & ankles. If uncontrolled it will spread to the larger joints.

However variations have the above weird symptoms plus occasionally acid reflux disease.

Does any kind of food bring it on?

Here’s some stuff to read and a Zoe Youtube podcast transcript with Rheumatologist Dr Katsumoto, and of course other podcasts by UK Rheumatologist Dr Tim Spector (Kings College London).

https://zoe.com/learn/inflammation-arthritis-diet-tamiko-katsumoto

Allergic reactions that mimic RA, that you should also be aware of.

https://patient.gastro.org/six-food-elimination-diet-sfed/

Hopefully you can read up both and start correlating your symptoms with your blood tests and your food diary. If in doubt, do a couple days water fasting (usually a very good thing) and see how you feel. You probably need a brain MRI to rule out anything there, and checked for Lupus too.

Sadly, Medicine should not be practiced by fallible humans because humans have limited capacity for continuous empathy, and once that is exhausted, it cannot be replenished with a good night’s sleep or even holidays. It’s like going through battlefield PTSD. I hope some day it will be all AI based with its infinite capacity for empathy and knowledge, but we are not there yet.

If you are London based you might have some additional options.

If you have a smartphone you could use Google translate to transcribe, but there may be other better apps specifically for deaf people you should check out. You are right, autoimmune often impacts hearing.

iwannerbeme

I think there is relay uk and a other few text to speak services.

I hadnt realised that RA affected hearing. Ive been struggling for a while. I got tested but my hearing is ok they said. Yet I have struggled to hear conversations over the last year or so. Nothing major but noticible.

I am both shocked and yet unsurprised at the accusations and general attitude you have been on the recieving end of. Glad you are making some progress and I hope you can find this is a safe place to let off some steam at least.

iwannerbeme

Ignore my first comment. I just realised you covered relayuk

Lizebeth

Thanks iwannerbeme and Arthuritis for the replies, I think keeping a food diary between now and my appointment is a really good idea and from the replies I've been looking at histamine intolorance as I think I might have it.

I do have a history of migraine and circulation problems in my hands and feet plus I get agonising foot cramps but only late at night, they are the kind of cramps that wake me up and have me rolling arround the bedroom floor as they only go off when I've been upright for long enough.

Reading about histmine dumping and foods etc has given me a lot of interesting leads to follow as I had some

abdominal/intestinal pain last year that had me referred to gastro enterology and as it was summer I needed the occasional anti histamine for hay fever which i noticed always took the abdominal/intestinal pain away immediately, mentioned it to the consultant who said he had no idea why it worked but if it worked then carry on, just not to take them every day because of tolerance issues.

Really appreciate all the help on this as i was getting quite Low about how isolating it is to have lots of unexplained symptoms.

Just want to add- hearing loss even if mild needs diagnosing as there are many causes like age related hearing loss but also some over the counter non prescription pain medications can cause hearing loss and if you're not aware of it as its gradual it can become worse than it needs to be.

Hearing Aids for mild hearing loss are not prescribed on the NHS anymore but I think they should be as the auditory centre in the brain begins to atrophy with out stimulation and then you're on the road to sever hearing loss which combined with ageing can be very difficult to adapt to.

Don't be shy about asking for an NHS hearing test especially if you are starting to notice conversations etc are hard work.

Osteoarthritis can affect the cartilage in your ear leading to conductive hearing loss and Rheumatoid arthritis can

give you Tinnitus as well as hearing loss ( I had a quick google to make sure and there is quite a lot of search results out there on it all)

just to add-I'm more than happy to give any advise I can about hearing Aids and adapting to hearing loss, I've been Deaf since birth and got hearing aids in my 30tys so I'm very familiar with the positives and negatives of them.