I learn something new everyday - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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I learn something new everyday

avtargill31 profile image

Hi folks. Its 7 in the morning and been awake most of the night, just restless sleeping. After seeing an arthritis hospital doctor back in November about my Raynaud's, an appointment came through to see an physiotherapist for yesterday, although the doctor said he'll see me towards the end of January to assess the medication he put me on. That appointment hasn't come through yet. I went to see the physio nurse who couldn't understand why I was there as she didn't have many notes from my file. I explained what the history was, which wasn't that much as this only came on last year, she hunted for the notes and said they weren't on the system yet as they haven't been checked by the doctor who saw me back in November. I thought that was rather slow, especially as I was now due to see him again. I was given a hot wax therapy for my joints and the nurse asked about my skin around the finger joints and knuckles on both hands as both look 'clubbed' and skin discolouring. I explained that the doctor saw this and said there is nothing to worry about. She said to tell him again next time I saw him as the nurse wasn't comfortable seeing it without a cause of action to try and fix it. She said to keep warm etc. I told her that my fingers have been going white in the shower which is very warm. She told me that it's not cold that affects it but a temperature change, so I was thinking stay out of the cold, but seems any change from cold to warm, warm to cold with trigger an attack. Has anyone else heard this. As I can't confirm with the doc as no appointment, a review of meds was suppose to take place, now the nurse has said keep taking until you see the doc but the drugs aren't working. #confused.com

11 Replies

The nurse was doing well enough under the cifcumstances, but this sort of thing is why you yourself need a copy of the specialists letter and any test results. And chase that appointment, the systems are often inefficient.

It's best to be polite but persistent.

Good luck!

avtargill31 profile image
avtargill31 in reply to

The nurse was a super star, very understanding etc. Will wait and see what happens.

Yes, it's the change of temperature that affects Raynaud's amongst many other things. In my experience it is best to try to keep warm as possible and not to worry too much about it because worry is not good for you. So, don't sit and worry if don't hear about your appointments. Ring the secretary and courteously explain.

avtargill31 profile image
avtargill31 in reply to zenabb

I thought it was the cold until the nurse said. I'm putting myself down for volunteering etc just to keep me busy. From full time work to nothing is very boring indeed.

zenabb profile image
zenabb in reply to avtargill31

Why did you give up work? Can we help?

avtargill31 profile image
avtargill31 in reply to zenabb

I haven't given up just yet. I had an infusion in November and it knocked me about a bit. The gp signed me off and because I work with glass and sharp knives and blades etc, work told me to get better first due to h&s. As the condition hasn't improved, I'm still off. Not sure what kind of help you folks can give but just boredom sets in sometimes.

You need to tell us a bit more about your work and situation if you want our suggestions. We perhaps can help because we have our own experience.

I think you should call the hospital and find out what has happened to your appointment. When you call ask for the secretary of the doctor you saw. He or she will know if the notes have been written up and the request sent for an appointment. In my experience, notes and appointment requests often get lost in the system.

Good old technology lol. Will call and see what happens. Many thanks for your advice

avtargill31 what happened with your appointments, and are u back at work?

Hi Grindy. The new appointment came through for this Wednesday. I'm not back at work yet but as I took a turn for the worse last weekend, I think I'll be struggling to go back. My partner was diagnosed with clots on both lungs about 3 weeks ago. That stressed me out. I then caught a cold or something, and last weekend I couldn't breathe so called 111 who sent for an ambulance for a possible heart attack. Hands were going blue etc almost to the wrist. Hospital said although test were showing boarding line attacks and clots, nothing showed up on the ct scans. I'm 44 and never been ill. Still feel guilty that I put everyone through the whole ambulance thing. I know how much they cost to send. Another day in my life eh.

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