Am I wasting valuable rheumatologist time?: Good... - NRAS

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Am I wasting valuable rheumatologist time?

LunaMini profile image
34 Replies

Good morning all,

I’ve been lurking here a few days reading some of your posts and having done so I’m not sure if I’m wasting valuable Rheumatologist time with a referral. Here’s a little back story…

Last month I finally contacted my GP (new surgery to me after house move last November) about swollen fingers on my right hand. They’d been like it for a few months but with the pandemic I hadn’t wanted to trouble anyone, my little fingers are small fry really compared to other things going on in the world.

I received a call back to try and was asked to send some photos over which I did. They were a little stumped as to what might be going on and the first suggestion was antihistamines and a wrist splint for a week and see what happens. I was just grateful for any suggestions! Unfortunately this didn’t work and a face to face appointment was made. There was even more head scratching from multiple surgery staff and raynauds was mentioned as my hands were so cold (always only my right hand) A few blood tests were ordered.

We’re now a month further on and lots of blood tests (except RF anti CCP) taken with no clear reason for them to be swollen. A request for advice and guidance was put in to rheumatology and they have requested RF and Anti CCP bloods (taken on Wednesday) and a referral.

Apparently I won’t get the RF blood results until the referral. I have X-rays scheduled for 13th July and am awaiting a date for a rheumatology appointment.

My worry is though that I’ll be wasting a valuable appointment that someone far worse off than me could use. My best friend keeps reassuring me that my fingers could be an early sign of something being a miss.

I’ve started making a note of all the ‘niggles’ that I have in case any of it is relevant to what is going on.

I’ve hopefully uploaded a photo of said troublesome fingers. I had to have my beautiful Pandora rings cut off. The lesion has now gone but at one point I had it on both index and middle fingers.

34 Replies
Lolabridge profile image
Lolabridge

Hello and welcome. Yes your fingers do look swollen so it’s absolutely right for you to be checked out by a Rheumatologist. It’s so important for any inflammatory arthritis to be spotted early and treated promptly to avoid irreversible damage. It’s a good idea to prepare for your appointment and you will find some very useful advice on the NRAS website to help you do that.

Good luck!

Soundofmusic52 profile image
Soundofmusic52 in reply to Lolabridge

My hand today is ache 😣

Couloir
Lolabridge profile image
Lolabridge in reply to Soundofmusic52

Ouch! Sorry you’re suffering today.

Bootoo profile image
Bootoo in reply to Soundofmusic52

😬

LunaMini profile image
LunaMini in reply to Lolabridge

Thank you so much. I really didn’t want to even have to bother the GP surgery but I reached the point that I had no choice. I just don’t like to be a burden and take up valuable time

Lolabridge profile image
Lolabridge in reply to LunaMini

Of course many of us feel that we don’t want to bother our doctors. But I hope we have reassured you that seeing the GP was the right thing to do and the fact that you’ve been referred to a Rheumatologist suggests the doctor is keen to get it investigated.

Oshgosh profile image
Oshgosh in reply to LunaMini

Please don feel you’re a burden.

sylvi profile image
sylvi

You won't know if something is wrong if you don't go to the apt. xxxx

Soundofmusic52 profile image
Soundofmusic52

They do look swollen in the beginning all my results were negative but I knew something wasn’t quite right so keep pestering them don’t give up it took 2 years for me to get diagnosed and in that time my fingers were damaged I am fine now sorted proper medication at long last so no my advice is keep going back be a pain speak out good luck 😷

medway-lady profile image
medway-lady

I have no idea what it could be I'm sorry to say only my right hand has been affected by RA and because of medications my hand is not deformed just on the odd occasion a bit puffy over the knuckles. But your post is clear, concise and full of very clear indications of a problem. I think your doing exactly the right thing by keeping notes and I did years ago when first diagnosed. I was lucky as Sero positive for RA which I think might be easier to treat but I still hope that you haven't got RA and it is something else which can be easily treated. Best of luck. x

LunaMini profile image
LunaMini in reply to medway-lady

That’s interesting that it only affects your right hand. I’ve read so many things that I think my brain might explode! Thank you for your kind words

medway-lady profile image
medway-lady in reply to LunaMini

I get fatigue from the CKD but my RA is in remission because of medications. In the past I had my left foot operated on to straighten and twice to remove Numroma's which are often linked to RA so that bit is surgically normal. lol But my left hand, shoulders etc are all normal. If you looked at me you'd never know I've had RA for many years. But with CKD life is far from normal unfortunately.

Mmrr profile image
Mmrr

An opinion by a rheumatologist for a puzzling situation isn't wasting anyone's time, so best wishes when it comes and do let us know how you get on ?

LunaMini profile image
LunaMini in reply to Mmrr

Thank you so much. I really don’t like to create a fuss at all but when they’ve been swollen for months it was time to do something. I will be sure to let you know once I get any indication

Zara0123 profile image
Zara0123 in reply to LunaMini

Hi LunaMini please don't think your wasting anyone's time. RA starts off slowly but can become very aggressive. I hope you don't have RA but looking at your hands reminds me of mine after being diagnosed and still believing I could manage without meds and thinking RA would not become too bad for me to manage and I'd be the lucky one and it would one day just go away. That was four years ago. Please get your blood test and all the other test done to rule out RA. Let us know how you get on. Take care

Madmusiclover profile image
Madmusiclover

You are not wasting anyone’s time. You are worth it. Keep going. Note and mention your niggles too. Keep in touch.

nomoreheels profile image
nomoreheels

Hiya LunaMini. My thoughts are that your GP is doing the correct thing. It's beyond his knowledge as a General Practitioner (& other Surgery staff involved) & why he's referred you on to a Specialist who he thinks may have a clearer idea. Early intervention is key, he is probably aware of that. It would have been preferable to include inflammation markers (ESR [chronic] & CRP [acute]) & RF in the first or further sets of bloods. It does show he was unclear as to a possible cause & at least they're being done now. You should be able to access the results prior to the Rheumy appointment, not sure why you'd have been told otherwise. It probably won't be arranged until after the xray results are in so plenty of time for them to be accessed… they should be back in within a week, but if that's what you've been told they must have their reasons. Those results won't necessarily reveal the issue as negative levels could also result in a diagnosis. RD is either seronegative or seropositive, whilst less common seronegative is when you have no or very low antibodies whereas seropositive is when you do have antibodies, the more common form.

The lesions puzzle me, not usually a symptom of RD but if you have other problems skin wise no matter how little, that could suggest Psoriatic Arthritis (PsA), another form of inflammatory autoimmune disease. The Rheumy will examine you though, palpate & move your joints & discuss the situation with you, maybe if there's any family history so I’d ask around if you're unsure if any other family members have or if any deceased family members had RD. there is the thought it could be genetic. He'll also probably order his own bloods & possibly further imaging, maybe ultrasound, to see the depth of inflammation there.

There does appear to some inflammation, it's difficult from a pic. Playing devils advocate, in warmer weather our fingers can swell a little bit anyway but this is going back to November time when you had a house move. Again, using our fingers more can affect them, packing & unpacking boxes, you don't do it every day, so unusual usage could be a consideration. That said you know how your fingers are normally & had reason to by contacting your GP & hands & feet are the joints most often affected initially, usually bilaterally. You don't mention pain, I would think that's an omission?

Another consideration is OA, the most common wear & tear arthritis & not autoimmune like RD. Usually more relative as we age, it is known to be found in younger people albeit less commonly too. I was diagnosed with RD with secondary OA at 48 as an example. It's treated differently as you would imagine. On the hand it's usually the DIP joints (nearest the nail) which are affected but I have PIP joint (mid joint) involvement too, also considered to be OA. A good test is to make a fist & see if you have any spaces between the top joints… if you have that would suggest inflammation & would be RD related.

It might help to have a read through the NRAS website, see if any other symptom are recognisably nras.org.uk

If the search box doesn't give you the answers you need or if there's anything else you think we may be able to help with just ask, we don't bite! 😊

LunaMini profile image
LunaMini in reply to nomoreheels

Thank you so much for the detailed reply. I really appreciate it.The Lesions are definitely a strange one. I’ve had that before a couple of years ago purely on my index finger (same hand) which was swollen at the time but I was just given some moisturiser and sent on my way. I have no other skin issues 🤔 Its almost as if the fingers swell to a point that they can’t swell any more so they break the skin to make a bit more room. I know that probably sounds odd.

Bizarrely my fingers are the opposite when it comes to temperature. Winter is the worst! As I mentioned before my index finger has swollen in the cold and remains swollen for most of winter but once the warmer weather comes it returns to normal. I’ve never had it in several fingers though. In winter I go through boxes of those heat pads as my right hand always brings me to tears. I have horses so unfortunately I need to be outside in parts of the day but even with gloves, mittens and heat warmers I really suffer.

Pain is a strange one 🙄 I have quite a high pain threshold (took me over 4 hours as a teen to go to A&E when I fractured and dislocated my shoulder!) but I will say that my fingers were tender when the swelling first developed, now it’s on and off. I’ve definitely become more fingers and thumbs when it comes to tasks involving smaller items (such as getting change from the till at work).

I did wonder about OA but I’m only 35 🙁

Windonmyface profile image
Windonmyface

Sorry you are having these symptoms as a young person! You are not at all wrong to seek help. It’s so much better to get started on treatment before damage is done to your joints. I developed stiff hands seemingly all of a sudden. I kept thinking it was caused by falling and breaking the fall with my hands on concrete. I felt silly going to a rheumatologist, but she immediately told me I probably had RA, and this was confirmed when a trial of prednisone proved to relieve my symptoms. The disease does not show up in my blood work (I’m seronegative). I too have Raynaud Syndrome in just my right hand, mostly in my index finger. I hope you can get a fast diagnosis like I did.

Sheila_G profile image
Sheila_G

You are not wasting a valuable appointment. You are as entitled as anyone to have a consultation. You need to get a diagnosis so it can be stopped from getting any worse. I know how painful pain in fingers can be, even the little one. Keep your appointment and let us know how you get on.

lilyak profile image
lilyak

Please don't feel like you are wasting a rheumie's time - that's exactly what they are there for. Only a rheumatologist can assess you properly and diagnose an inflammatory arthritis, if that's what you have. Its impossible to tell much from photos if you have arthritis, but none of the photos look like Raynaud's, if that's reassuring at all. But definately don't feel you're wasting anyone's time. RA and other forms of inflammatory arthritis can be very hard to diagnose, especially in the beginning. You need that appointment and I hope it goes well! Good luck :).

LinaM profile image
LinaM

Ouch they look sore … and very similar to mine. Could be psoriatic arthritis…. Which is similar to RA and has more or less same treatment and under care of rheumatologist . If you have someone with psoriasis in family I was told it could be more likely ( I’m no expert tho … still struggling finding a treatment). Good luck and hope you get help soon .

Ohuela profile image
Ohuela

Hello Luna it could be RA when I first got RA twenty or so years ago that was one of my first problems but got it all sorted after seeing RA team it's not very nice for you but once they are on it then things should get better 😉

RAexperiences profile image
RAexperiences

HiNow is 100% the right time to see a rheumatologist as early intervention is key! The sooner the better. Best wishes to you

Haz58 profile image
Haz58

I have the same problem, mine started swelling and get really painful about 3 weeks ago but it’s in my index and middle fingers on both hands and my little finger right hand. In the mornings I can’t make a fist, I have emailed my rheumatologist to ask for advice but she’s on 2 weeks leave. She was the one who told me to contact her if I got any new swellings in my small joints so no you are not waisting their time I’d say. Keep the appointment and see what they say. I’m not having any treatment for RA as yet but am seroposotive so she says she highly expects me to show RA signs and I must contact her when things appear.

Oshgosh profile image
Oshgosh

I feel that you are not wasting rheumatologist time.You have to fulfil criteria to be referred to a rheumatologist.

The rheumatologist rhe”matologist will have access to more blood tests.

They’ll then make their decision.

I don’t think you are wasting anybody’s time.

Tale. Care

Hodc profile image
Hodc

I saw your pics and it so reminded me of how mine started. I used to wear rings that were K or L, now I'm R or S, fingers changed so much. Lots of unworn rings now, which I must do something about.Good luck with all the tests.

madme1 profile image
madme1

If you even have only a suggestion of rheumatology condition then no, LunaMini you are not wasting their time because you have a right to answers. Not only that was diagnosed with a condition called Lychen Schelerosa, which sometimes be mistaken for thrush but can appear on other parts of the body as well and I was prescribed Dermovate, steroid cream which was the only thing that could keep it in check. It is another auto immune condition, so anything like a lesion is best to be checked. You need this investigating could this be a metal allergy. Hope you get it sorted.

Braecoon profile image
Braecoon

I have RA diagnosed 2014. I am well controlled on DMARD meds. Last year I experienced a bright red toe and painful swelling that spread into my foot and then up into the ankle. Due to lockdown everything was conducted via NHS and a duty GP by phone. Despite there being no entry wound I was treated for cellulitis, which did not work straight away. Since then I have been left with a permanent bright red toe which sometimes turns purple when it is cooler (mix of engorged blood vessels and a touch of Reynolds??). I joined the erthromyalgia Facebook group as my ongoing symptoms seemed to point in that direction, which is also an autoimmune condition affecting blood vessels. It is difficult to follow this up with Rheumy team as appts are all online where I am at the moment.

The rheumatologist is a very good starting point to find out if your condition is autoimmune and investigate several conditions, even if it is to rule out the obvious and then look for the precise problem.

Please do let us know how you get on. Best wishes

Klutzy profile image
Klutzy

I agree with everyone who said you aren’t wasting a Rheumatologist’s time. You clearly have something going on. I’m in the same situation as you, have symptoms but unsure what’s happening.

Because of your lesions, I hope the Rheumy will test you for Sarcoidosis. That has lesions, redness, swelling andstiffness, etc. I only heard about it in looking for my own answers. But it does typically involve lung or lymph node issues. Yet some have no symptoms and only find out they have it with a chest X-ray. Hope you can see the Rheumy soon and get help. Good luck!

LunaMini profile image
LunaMini

Thank you all so much. You’ve made me feel so much better about the appointment and have also given me a few other things to look at as possibilities.I’ve had a quick look at the wait times for a referral and it’s currently looking like 25 weeks, so a Christmas trip!

Thanks again everyone and I’ll be sure to keep checking in and let you know what they eventually say.

Green230461 profile image
Green230461

You are not wasting time you are saving money! If diagnosed with anything early you can be treated quickly and therefore it does not progress to something worse. Sometimes RA Burns itself out after one flare!Also undiagnosed RD can cause worse issues I ended up with a shoulder replacement which must have cost thousands!

On a more human note you don’t deserve to be in pain and you need answers. So keep going and I wish you better soon. 🌺

Hello LunaMini. Neither you nor the GP is qualified to make a diagnosis of RA. If it is RA, it will not just get better on its own and you need to start treatment asap to get the best outcome. Rheumatologists would far rather see you at the start of your illness than later, when it has damaged your joints. You are not wasting their time. My RA went from mild to horrendous - almost in a wheelchair - in the 5 weeks between my first and second visits to the rheumatologist.

It's a bit like finding a breast lump. Breast cancer clinics would rather see lots of women with benign lumps in order to pick up the serious ones than have women wait and get worse.

dippyd09 profile image
dippyd09

You aren’t wasting anyone’s time. You are obviously concerned about what’s going on so keep your appointment. You are being sensible in getting investigated and if it is not RA then they will be able to get to the problem. Look after yourself and I hope you get some answers at your appointment. Take care.

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