My wife has recently developed purple toes/feet and was experiencing some pain around her joints over the last 3 months, reducing her mobility. She has nearly got full range of motion back but the area around her joints still cause pain particularly in the evenings around knees/elbows.
I'm worried this will suddenly get worse and other damage is occurring so we want to get a nailfold capillaroscopy arranged but from speaking to Royal Free they have a long waiting list for this and the thermography test after seeing a specialist.
Any suggestions on how to get the capillaroscopy quicker? I would pay for this privately if so but I just couldn't find where this can be performed. Should most rheumatologist be able to perform this? It sounds like it's a simple and quick test but I don't see where I can book it.
Edit: removed "connective tissue pain" reference as was confusing.
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biggrumpycat
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I have to say that I’m not sure what you mean by ‘experiencing connective tissue pain’? Connective tissue is everywhere, and having had scleroderma for 35 years you get joint pain, but not really connective tissue pain. Capillaroscopy is a relatively simple test, but, it would only be used by trained specialists, it’s not really something that you could get anywhere, usually specialised scleroderma clinics. All the best.
Basically the area around her joints hurt (elbows, knees, shoulders, ankles, hips, even jaw at start) and she could hardly walk, lift arms or hold light objects when it first came on suddenly. She felt it was the tendons rather than inside the joints.
Rheumatologists looked before Raynaud's come on and thought it was tendinopathy and not within the joints themselves so didn't believe RA was likely but now that Raynaud's has developed suddenly they are suspecting a CTD so doing sclerosis and myositis antibody tests.
They did blood tests previously but for ANA due to "stock supply issues" on Hep2 slides they just did a CTD panel instead which ran the more common autoantibodies. There were negative but now they are rerunning ANA with additional antibody tests but still missing out quite a few of the less common scleroderma ones.
Just worried for a long wait considering Raynaud's may have appeared at the same time as this widespread tendon/joint issue.
It is a waiting game unfortunately for connective tissue disease, it took me 10 years to get a diagnosis, but it sounds to me as if they are doing the right things, ruling out one before considering another. I think that you should be reassured by that and if you’re worried it might be worth considering a couple of private consultations with Professor Denton’s team at the Royal Free hospital in London.
Thanks very much for the reassurance and we'll try to calm down and have some patience I'm actually in the process of trying to arrange a consultation with Dr Ong at Royal Free so hopefully we can get something booked in.
Hi there, sorry you have the worry. I tried to book private appointments with Dr Ong at the end of last year. I spoke to his secretary a couple of times (who seemed helpful) but then they didn't come through. (I am a Royal Free patient desperate for a follow up after my 1st appointment in 2019). In the end I went elsewhere! Suggest you be persistent!
Hi biggrumpycat, I am sorry about your wife’s pains, I know exactly what she is going through. I have had the same symptoms and I have been in pain since March Last year. They thought initially I have tendonitis and related to my job. The King George’s rheumatologist decided to give me steroids injections in my shoulders.
After a couple of weeks I felt terrible and swollen my whole body muscles were weak and I was breathless.
Had blood tests give by my GP and couldn’t find anything.
I then developed very swollen hands and the pain was even more aggressive in my shoulders elbows and neck . Like I had random stabbing pains in my hands and the colour of my hands had changed to a redder shade.
I developed a neuropathy as well on my upper back and shoulders and whole arms.
I had arranged to see a private doctor in my country as here was long waiting list.
I have been diagnosed with raynauds and possible scleroderma.
Came back here in the Uk and arranged to see a specialist on Scleroderma privately.
Doctor Ong was confirming what the others have said and finally I have a treatment and a diagnose after 1 year of stress because not being able to get an appointment with NHS.
He is a very nice and good man. She will be in good hands.
So sorry to hear what your wife is going through as I am in a similar situation. It is very hard to be patient when you are having such troublesome, strange, debilitating
symptoms and the worse part is without a diagnosis you cannot access treatment, as other people on this forum
experience. I do accept though that a diagnosis, especially with negative bloods, as in my case, can take along time.
An example: recently put in my repeat prescription one of which is for Omeprazole. The Speech and Language therapist ( seeing because facial skin tightening, reflux, swallowing and mouth getting smaller, now affecting my
speech,is getting worse) advised that together with Omeprazole, Gaviscon Advance could be prescribed by my GP. Bad news without a diagnosis yet they are now discharging me. Told I needed to take this 4 times daily
because my symptoms strongly suggest I am now at risk of aspirational pneumonia.
GP, who has never seen me, decided in their wisdom that I could make do with half my Omeprazole and that I could get Gaviscon Advance ‘cheaply’ at a supermarket.
Without a prescription I can only get a 300ml bottle, I was told to take 4x10ml daily. It doesn’t take a maths degree to work out that at approximately £11.00 a bottle this is going to cost me over £40.00 a month!!!
This is so obviously cost cutting in the NHS which I can understand in certain circumstance’s but I strongly feel that with a diagnosis they wouldn’t be able to do this.
I could give other examples as well but won’t bore you.
I have looked into getting a private cappillaroscopy, just so that I am given the opportunity to discuss the results.
Just had a phone call from ‘Spire’ and they don’t do it at any of their hospitals. I did find a Consultant Rheumatologist, think he was in Lincolnshire, but I can’t
remember his name. I will search my tabs and give you the info if I can still find it. Maybe too far for you though,
same for me.
I did message you privately as I didn’t want to bore everyone with my repeated diatribes as oneDoctor
once said to me! The message wouldn’t send and I couldn’t work out what I was doing wrong (hopeless at anything tech). If anyone could explain, please do. I typed
your contact name but it said it needs a ‘recipient’ which I thought was you but still wouldn’t send?? Perhaps I do need a degree ! ha ha 🤔🥴😂
Please give your wife my sympathy and hope she can get
help. It’s wonderful that she has you on her side, my husband is also very supportive. We sometimes forget that this also impacts on your life and I feel for those people who do not have much support. If you and your wife would like to message me privately, please do.
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I'm actually in the process of trying to arrange a consultation with Dr Ong at Royal Free so hopefully we can get something booked in.
hi just need someone 2 talk to after months and months of pain just found out my 11 year old daughter has raynaulds x
Psychological effects of scleroderma
Excercise to help joints and muscles
Raynauds?
Pain and things I feel I have to do
