Marfan Syndrome Support forum

Tiredness

Pixi — 7:41 pm, Sat 28 Jan, 2012

Author: Pixi

Posted: 7:41 pm, Sat 28 Jan, 2012

feeling the cold is another of our nightmares. If you can't get your feet warm try wearing warmer socks. I can recommend Dunlops fleece boot socks. You can buy them for �7.99 (Sometimes cheaper) at TJ Hughes. I think Primark do them at a similar price.

Nerve damage

Pixi — 7:36 pm, Sat 28 Jan, 2012

Author: Pixi

Posted: 7:36 pm, Sat 28 Jan, 2012

It could be a trapped nerve. I would do as Polly suggested and contact your specialist directly

fingers ad toes

Polly — 12:57 pm, Sat 28 Jan, 2012

Author: Polly

Posted: 12:57 pm, Sat 28 Jan, 2012

Yes I say Raynauds too. I get that from time to time, especially in the freezer aisles at the supermarket! I feel the cold terribly and wear 3-4 layers to try and keep warm. Thermals are a must and the heat patches are great for helping keep warmer

In hospital again!!!

Polly — 12:52 pm, Sat 28 Jan, 2012

Author: Polly

Posted: 12:52 pm, Sat 28 Jan, 2012

Sorry I have only just seen this post Lee. How are things at the moment. My first thought would have been to discharge myself and go to A&E in a different hospital. I do hope since your last post things are getting better for you

Polly x

South west UK

Polly — 12:21 pm, Sat 28 Jan, 2012

Author: Polly

Posted: 12:21 pm, Sat 28 Jan, 2012

Hi and welcome to the forum. As you will find reading the posts here there are a lot of other ailments that we have in common that the doctors don't mention as alot are not written in the criteria it's just things that we have found over time

How long can you live without treatment

cheeky — 10:39 pm, Thu 26 Jan, 2012

Author: cheeky

Posted: 10:39 pm, Thu 26 Jan, 2012

I have a floppy valve and regurgitation. They told me its common anyway. Its never usually a problem but sometimes it can get a tiny bit worse and then they give you tablets and thats it. I am having arrhythmia and tiredness with mine but thats it really. It has the posibility of getting worse but as you will be regually checked then you will be fine. Also the doctor who checks your heart will be able to reassure you just ask lots of questions.
Im glad it went well.

cardiac symptoms

Darren — 4:25 pm, Sun 22 Jan, 2012

Author: Darren

Posted: 4:25 pm, Sun 22 Jan, 2012

Bec, Ive just posted your message on the facebook page as its really busy on there.

I will write something for this section tomorrow with a bit of luck.

DLA reform to P.I.P

Pixi — 4:31 pm, Fri 20 Jan, 2012

Author: Pixi

Posted: 4:31 pm, Fri 20 Jan, 2012

Thank you both for your help. I downloaded foxit. I will have a read of the proposals later.

Service dogs

cheeky — 7:12 pm, Sat 07 Jan, 2012

Author: cheeky

Posted: 7:12 pm, Sat 07 Jan, 2012

Wow their amazing. Iv always love to be around my nans dog rosie. I think animals have a real positive effect - im not sure why but I always feel more relaxed and comfortable around animals whereas on your own everything seems a lot harder. What a great charity

Weight gain?

Pixi — 2:10 pm, Sat 07 Jan, 2012

Author: Pixi

Posted: 2:10 pm, Sat 07 Jan, 2012

Ask your GP to refer you to a dietician.

Hypermobility

cheeky — 10:24 am, Sun 01 Jan, 2012

Author: cheeky

Posted: 10:24 am, Sun 01 Jan, 2012

To help with day to day living with the condition I use wrist supports, crutches, braces , heat and cool packs and physio but what other items or accessories help with the every day tasks? Thanks

sleep problems

robyncummings1 — 10:14 pm, Sun 25 Dec, 2011

Author: robyncummings1

Posted: 10:14 pm, Sun 25 Dec, 2011

My local genetist contacted a leading proff in marfans regarding my sleeping problems and he suggested i see a sleep consulant who organised a sleep study as there is a strong link(sure it strong link but could be wrong) between marfans and sleep apnea.
The doctor is trying to determine wirth its sleep apnea or a sleep movement disorder
Either way becs keep at your doctors for a referral it may help with ur pain the future :) although if it anything like mine it will take ages

Benefit advice

cheeky — 11:04 am, Tue 20 Dec, 2011

Author: cheeky

Posted: 11:04 am, Tue 20 Dec, 2011

Hey Im still waiting for mine I filled it in 10 weeks ago and was told they needed more time to think about how much I should get. I apparently get the money from when I first applied so thats good but they still havent decided.Iv got my blue badge now though.