To think a physiotherapist can’t help me over the phone? (And probably not face to face either)

[MyFingerHurts21]

I have pain in various joints but predominantly in my fingers. This has been going on for about five years now (comes and goes). My fingers keep swelling and the pain keeps me from sleeping. I find it hard to grip and my fingers feel stiff. Two of the fingers on my right hand have changed shape and one of those fingers I can’t bend properly anymore. The pain is mostly in the middle (PIP) finger joints - they feel bruised if they are touched.

I have pain in other joints too (have done since childhood really) but it’s the fingers that are impacting most on my life as I can’t do activities I used to find fun due to the pain. I also have pain in my elbows, lower back, and knees. I have been to the GP several times over the past few years when the pain flares. They did a blood test about three years ago and concluded from that I don’t have rheumatoid arthritis. Well that’s great - but what is causing the pain? GP then decided I had DeQuevins tendonitis and tennis elbow and referred me to physio. Went to physio they gave me a splint for my thumb, told me to rest my hands and said my hands had low muscle tone and are extremely bendy (this is true all my fingers bend backwards). That was it, they discharged me and said they couldn’t really help.

Fast forward to now and the pain in my fingers is worse than ever. I had a consultation with GP asked to be referred to a rheumatologist as I want answers. GP wouldn’t refer me, told me I didn’t have rheumatoid arthritis, and gave me Naproxen for the pain. Rheumatoid arthritis is not the only joint condition though is it? As an example I could have Psoriatic arthritis, which is not beyond the realms of possibility considering I have Psoriasis.
A few weeks later I contacted the GP again (econsult) asked again for a referral. Again they say I had a blood test previously which shows I do not have rheumatoid arthritis. The pain is likely caused by hypermobility as suggested previously by physiotherapist. And they said they would refer me to the MSK team. I assumed this meant I would get to see an actual doctor who specialises in this sort of thing and can help me. But after waiting weeks it turns out no, it’s just physiotherapy. The letter said to call for an appointment, which I did. I was then told it would be a telephone appointment. In a months time! How is that actually going to help me? I’m so frustrated.

The physio might be able to refer you on if there’s nothing they can do for you.

A friend who's a physio says she can do lots via zoom, so maybe give it a go. But if you're in pain do make sure thr GP is helping with that in the meantime

Sounds like you could be hypermobile.
A phone physio appt is useless. DS had one, I subsequently took him to local walk-in so a medical professional could look at the problem as opposed to
Him
Being diagnosed and treated over the phone.

My husband and mother have both had zoom physio consultations which have helped.

The first appointment will be to assess needs and suggest exercises etc. Likely followed up f2f.

Yes, I can see how Zoom wouldn’t be too bad, but this is an old fashioned phone appointment. They won’t even be able to see me. It’s not like they can even look at my fingers. I hope they have the power to refer me on, last time I was just discharged.

Physios are great, they can diagnose all sorts and refer you to a relevant specialist. Over the phone, they are pretty rubbish.

I've just been interviewed by a computer program.

Idiot system managed to ask the same question twice, confused itself and stalled, telling me to call the physio service.

YANBU.

That sounds so painful, I’m sorry you’ve had to go through that with so little help.

I have ehlers danlos (hypermobility type) and I got to the bit about bendiness and low muscle tone and thought you might be similar!

I completely get your frustration at being referred to a physiotherapist rather than a doctor, but I honestly find my physiotherapist much much more knowledgeable and helpful than a doctor. They’ve helped me fix lots of issues and generally known a lot more about pain reduction and muscle strengthening than a doctor would.

And finding a doctor with the right specialty is hard - I was diagnosed by a rheumatologist who said he wasn’t the right person to diagnose me, but he was the closest why they had. And that was in a large teaching hospital!

I have had to go private for physio quite a few times as there can be a really long delay waiting for nhs physio. It sucks to have to do that, though. On the plus side they did manage to help sort out some tendonitis after a dislocation over the phone/email which I wouldn’t have thought was possible.

So don’t give up all hope completely yet! (But having said that I completely get the frustration as it took 9 years to get my diagnosis!)

It seems to be a trend amongst physios lately that they give you loads of verbal advice on what you should do, which is all very well if you can (a) retain it all (b) put it into practice and (c) have Olympic athlete levels of discipline. I am actually a fairly well disciplined athlete, although nowhere near Olympic level, but I once wasted £50 with a physio who told me how to breath. Apparently, I had to breath from my abdomen with longer deeper breaths, which is something most competitive athletes learn as teenagers anyway. What a waste of money.

Anyway, over the phone physio is almost guaranteed to be a waste of time for the above reasons. More so if its NHS physio. So many of them use lowest common denominator general advice. You'd probably be better off using google.

It sounds like you have EDS. If its only in your fingers and toes it shouldn't be all that troublesome. NHS physio will probably give you exercises to do like kneeding plasticine or a stress ball but this won't really address EDS type symptoms. The NHS hasn't really got round to recognising EDS. I'd go back to your GP and be more insistent about an orthopeadics referral, although they often don't recognise it either...

This sounds exactly like my experience. I have been fobbed off for years, with joint pain, tendonitis repeatedly in at least 3 joints. No one has ever linked this to my psoriasis. I was finally referred to rheumatology in January, have got an appointment in July. The only advice I can give is research as much as you can and keep going back to the gp and requesting a referral. Good luck.

It actually does sound like you could have psoriatic arthritis, yes.

I would to think strategically here, @MyFingerHurts21. Try to get the physio onside to pursue this.

Over a third of rheumatoid arthritis cases are sero negative (ie don't show up in the blood test). Pretty much all of psoriatic arthritis cases are sero negative. The blood tests are indicative, but not a diagnosis.

In your finger joints, it's again 'textbook indicative' for PIPs to be involved as well as DIPs, but not always.

So many cases of psoriatic arthritis are missed early by rheumatology departments. You might be better served getting a dermatology referral and asking your dermatology consultant for advice about the holistic picture. Some medications for psoriasis also treat psoriatic arthritis.

I have a very poor experience of rheumatology.

I work in an orthopaedic clinic and am familiar of the role of MSK physios. I am in Ireland but here the MSK physios are connected to a consultant. So if your referred to them your under the care of a named consultant who they can liaise with. If they felt a face to face appointment with the consultant was necessary they arrange it and it’s all very quick

You have my sympathies, it's so frustrating feeling like you're not being listened to. Have they actually referred you to the MSK team to investigate or straight to physio? Whoever you see it's worrh pushing for scans and blood tests. I'm stuck in a cycle with no solution too so hope you get an answer soon

Really, I want an actual proper diagnosis. Then I can say this is why I’m in pain. It’s depressing my fingers getting worse and worse, changing shape.

I have wondered about EDS before. All my joints are bendy. If I carry a shopping bag it feels like my elbow comes out of alignment. I have to kinda manipulate it back to where it should be. This happens with my knees too on stairs. The GP said I was imagining it and it was the tendon snapping over the joint sure to tendonitis.

I’d love to know why I have tendonitis in every bloody joint. Over the years I’ve got very used to managing pain particularly in my knees and elbows. But my fingers I can’t get used to.

Can you have hypermobility and psoriatic arthritis? As I do think I could maybe have both.

I wouldn’t have thought hypermobility would change my finger shape. Unless of course it’s osteoarthritis due to extra wear and tear from the hypermobility.

Either way, I really hope this telephone appointment yields solutions.

Over a third of rheumatoid arthritis cases are sero negative (ie don't show up in the blood test). Pretty much all of psoriatic arthritis cases are sero negative. The blood tests are indicative, but not a diagnosis.

Exactly @EdwinPootsLovesArchaeology this is why I’m getting so annoyed the GP just keep repeating my blood test result at me as though it’s 100% accurate. I’m not sure my psoriasis is bad enough for a dermatologist else I’d definitely purse that avenue. But maybe I should re-flag it to the GP

I’ve recently been diagnosed with psoriatic arthritis and my symptoms are very similar to yours. I had flare ups on and off for years and years of doctors telling me I didn’t have rheumatoid arthritis. I don’t really have psoriasis, but my dad did. I actually didn’t know psoriatic arthritis existed until I was diagnosed. Anyway, I’ve had a referral to rheumatology and it’s a relief to have an answer. I think you really need to push for a referral to rheumatology, can you get a second opinion? Hope you get some answers, I know how awful the finger joint pain can be!

Did you get injections for the DeQuevins tendonitis?

I had similar in my fingers and wrists - eight weeks of injections in my hand and it’s been absolutely fine since.

Ask to see a different GP. Bloods should be run again if your last test was 3 years ago. I’d suspect EDS, hyper mobility is one of the most common but there are another 12 odd variations and you can have more than one of them. Certainly sounds like an inflammatory systematic condition.

I have seronegative RhA. Ie it doesn't show up in blood tests. Took years to get diagnosed but its common. Id see another gp if possible or even pay for a private rheumatologist consultation(I did), it was more than worth the £150 to get a diagnosis, finally.

It really does sound like PsA, you have my sympathy. I've got RA and I'd never have imagined that such tiny little joints could cause so much pain. I wear compression gloves all the time, they help somewhat but they are a bit of a pain in the backside.

If you have a spare moment, Google 'swan neck deformity' and 'boutonnieres deformity'. Do the pictures look anything like your own fingers? Also, how are your nails? Do you have any pitting or Beau's lines at all?

I'm so sorry that you are having problems being taken seriously. Perhaps the dermatology route might be better? Is seeing a private rheumatologist an option at all?

@MyFingerHurts21 are you in Sussex/Surrey? MSK have such a wide range of services, they really will be good.

As a pp said, I used to work with MSK team, it's not just physios - it's a multidisciplinary team including neurosurgeons, pain consultants and often rheumatologists among other health care professionals.
The physios do the triage and initial assessments and decide with the team what service to start your care under. Where the msk teams work well they are amazing please follow through with it!

I'm sorry you're in so much pain though, I hope you get relief soon.

The GP can prescribe pain killers whilst you are working through the MSK referral.