? What arthritis

[Dazakella2010]

Hi all....

Well.... my arthritis started in my left thumb joint.... long story short... then went into my whole thumb socket, now the wrist and all the finger joints and knuckles.... I have the same in the base of my right thumb. I also have pain in the left ankle, at the back and side of the ankle and in my toes... in my right knee and right shoulder. I have osteoarthritis in my neck and lower spine. I was referred to a rheumatologist urgently by my hand specialist last august... I was seen in December... they wanted to do an u/s on my hands, which was scheduled for 1st feb, that was cancelled due to Covid!! I had my telephone appointment with the rheumatologist today which was supposed to be to get the results but the u/s is now booked for 2nd March. I explained about my hand and that since I last saw her before Christmas that pain has now gone to my knuckles and fingers... and that my thumbs and wrists is so swollen as well as my toes... her answer was well I didn’t see any inflammation when I last saw you in December, to which I burst out crying!!! I said I’m in so much pain... I can’t use my left hand I can only half use my right the pain is so immense!! And now I have to wait, she said we are in the middle of a pandemic!! I said I understand that and appreciate that! But that doesn’t help me that doesn’t help my pain. She made me feel like I was a fake, like I was making it all up because I had no inflammation when she last saw me. X-rays that I have had previous have shown early signs of arthritis buts it’s getting worse by the day. Can anyone please give me some advise? Thank you x

[LesE62]

Hi and I am sorry you are having such a bad time of it.

I'm afraid I can't offer you any advice but thought I would share that your story is very similar to mine. I also have arthritis in lower back and neck.

However early last year, I began having very bad pain and swelling in both thumbs, several fingers, elbows and also big toes (I have occ gout in left toe but this feels different). My big toes seem to becoming more bent and also having issues with smaller toes too.

I also have been suffering with painful shoulders and I do realise that this is probably from neck problem but it is sooo difficult to speak to any of my GPs, let alone see one. I too realise that covid has made everything slower and more difficult but I when I did speak to a GP on the phone she just told me it is "probably just osteoarthritis". I was then reminded about the pandemic too and that is pretty much where I am atm. In addition to my other painkillers, I have been given ibuprofen gel which I very much plaster on. Even given this, very difficult to cope and sleeping is very problematic too as the pain worsens once I go to bed and toss and turn all night and of course, every time I change position, the pain wakes me up!

So please don't feel like you are or have been treated like a "fraud". I truly hope you can get your pain/problems alleviated soon and that things move on for you soon. I do understand your frustration.

Take care and keep safe.

[Dazakella2010 in reply to LesE62]

Thank you for your reply....

it’s so frustrating isn’t it... I got off the phone and just felt like another number and a fraud! It’s right what people say with different types of arthritis... “because doctors can’t see it... because all the tests come back NORMAL” they think your ok...

I’m shielding and feel very vulnerable at the moment.

Take care and stay safe x

[LesE62 in reply to Dazakella2010]

Look after yourself and I know things will get better for us all.

Be kind to yourself and you are no fraud, unfortunately it's the sad situation we are in just now. Just try to focus on the warmer, sunnier weather (let's hope) and maybe that will help alleviate some of your pain as I know the cold weather makes me worse.

Take care and keep your chin up x

[RC423]

My Arthritis started in a similar way. I thought i had sprained my thumb and within 2 months every joint hurt and was swollen. Look for relief while you figure out what is happening. My GP gave me Predinisone, the steroid treatment. It is a temporary fix, but can give you some relief to get through your days.

[katieoxo60]

Sorry you are going through a really bad patch , this cold weather does not help. Sadly I am not sure what to suggest as I have been that way myself. I was told similar to you nothing much on the xrays, early arthritis. Have had it for years since in my thirties I am now in my 70s . But this early arthritis as just resulted in my having to have a total knee replacement no choice. Both my GP and Physio were quite taken aback at the state of my knee and the fact I was still walking , my hands still work but I have been doing exercises all these years for my thumbs. I do find keeping warm even with pads on the joints does help. I use more than one solution but don't shy away from the GP or they get complacent and think you are OK. My friend is using one of the Gabapentin drugs and found it works for her anything is worth a try even herbal remedies. Thinking of you hope you get some help soon , good luck.

[Batty1]

Hi Dazakella2010 ...:.. Your not faking and your Rheumy is a knucklehead to even hint that you are.

Do you have psoriasis or does anyone in your family have psoriasis?

Did they test you for Rheumatoid arthritis or ?

[Brychni]

The ultrasound is key and is what you should be pushing for. I'm assuming, although I can't see from you rposts that you have had all the relevant blood tests which can sometimes show inflammation markers for rheumatoid arthritis (but not PsA - they are slightly different). I say sometimes as people with obvious and confirmed RA are up to 50% without those markers.I was diagnosed with ultrasound scan on wrists. My problem now is that I also can't have another scan over a year later because of Covid. However, I was told in not so many words that, it would be the only way to monitor disease progression in the absence of inflammation markers in blood.

My symptoms have progressed in the year since diagnosis and I was so shocked by the lack of interest and statement that it was probably 'mechanical' that I stopped taking DMARDS on 18th and have had to resort to a booking a private rheumatologist who can carry out ultrasound to see what has happened with the inflammation since last year.

Since 18th, I am beginning to feel quite a bit worse and certain niggles are creeping back in.

Good luck.