Teen support?

[CSC39]

Hello everyone. I’ve just joined on behalf of my 14 year old daughter who was diagnosed with Raynauds a couple of years ago. It is in the family.

I have two questions please.

First, are there any support groups for young people, or indeed teenage members here? The problems she has at school with Raynauds are a bit specific to her age group and it would be great if she had someone her own age to share with. She is just starting Year 10 and GCSEs so it’s a stressful time.

Second, her symptoms are getting worse and we have an appointment with the consultant next month. What should I be asking? She was diagnosed with primary Raynauds. Particularly hands and feet freezing - she has one warm finger which is very odd. She gets pins and needles a lot, but also starts shaking when cold and can’t stop. She has problems with sweaty feet and athlete’s foot. When she warms up she feels like her skin is burning hot and radiating heat. But she can’t feel temperature well so is in danger of burning herself touching hot things. She is on nifedipine and got over the headaches and nausea but it doesn’t seem to be very effective any more. Where do we go next? Many thanks

[fairy56]

Hello CSC39, I think the best thing you can do is when you attend the appt, mention that the Nifidipine doesn"t appear to be working anymore, also ask them if they can point you in the direction of a specific support group for your daughter, in the meantime there is always this site, and if I remember correctly there are a couple of teenagers that use this site via their parents. Hope this helps just a little bit, x

[CSC39 in reply to fairy56]

Sounds like good advice- thank you!

[Redoralive]

So sorry to hear about your daughter. High school was hard enough for me, without having to deal with health issues. Im a bit outside the age bracket you're looking for now, but I've unfortunately never come across a support group aimed specifically at younger people (excluding what Fairy said about the other parents who post here- although thats not particularly often). Does she have a facebook or instagram? I know insta has a fairly large raynauds tag, and facebook tends to have groups of people on there talking about similar problems.

As for the actual treatment I can't be much help. My raynauds wa the first part of my Scleroderma diagnosis. I have tried nifedipine in the early stages of diganosis (about 2 years ago at 22) but i couldn't cope with the headaches and seeing as i then had a lot worse stuff happening i opted out of treatment. I survived with gloves, warm water and hairdryers. Just recently with the fluctuating temps, my raynauds has got a lot worse and I've been prescribed a low dose of viagra. Im not sure if its a common treatment but my specialist at Royal Free said its really good at opening blood vessels (hence its other use... *cough* 🍆) so fingers crossed it works. My middle finger tends to stay partially red when the rest of my hand goes so maybe that will help reassure your daughter a little.

In terms of questions- has she got any ulcers because you NEED to bring thst up if her fingertips start feeling sore. Does she have regular blood tests to check its defo still primary? Is she wearing gloves in all temps? Have you considered diabetic/breathable socks? People on here have a lot of different treatments so maybe its worth opening a separate thread (or looking at old ones) to find out some ideas for specific raynauds treatments to bring up with your GP. Wish your daughter luck with her GCSEs

[SVBO]

My daughter is 12 next month, we are in Norfolk. I don’t know how we can put them in touch. Instagram perhaps? She is Olga.blep 😬 there. This year she started high school. I went there and talked to a special needs teacher. I explained her about Reynolds and Scleroderma and told her that my daughter can not do outside PE if feels cold. Also she was allowed to wear Dr Martin boots with socks instead of shoes as well as gloves. He has emergency hand warmers in her bag just in case. She doesn’t take any medication for it at the moment but we used to give her nefidipine and plasters as well - we didn’t think they were working to be honest...

[Bec9680]

My friend said she got rid of her Raynauds by juicing celery on empty stomach first thing in the morning. I just started & it seems to be helping. There is a book called medical medium has so much great information, the author says this helps to get your gut health back right. Also some doctors are saying scleroderma & other autoimmune diseases are caused by bacteria. Check out roadback.org to get information so many success stories. I have systemic scleroderma & found doctor to do right tests & I tested positive for mycoplasma bacteria. Been on antibiotic for 3 months & seeing improvements, thank God!