Diagnosticado com Fenômeno de Raynaud secundário, mas ainda tenho?

Alergias, sangue e sistema imunológico
1

at first for about a year I had severe color change white, blue, red and then I had an flolan treatment a year ago and things started to change about 3 months after that. Now my fingers rarely turn white but are still painfully cold and they are more of a red color with a burning sensation...ouch

​Today I defrosted freezer and almost cried from the pain....although cold and painful they just went deep red and I guess I could compare to brain freeze only in my fingers...

​Please help if anyone else has symptons like this and what they've been told by their doctors..thanks

2

Did you have a follow up appointment.? I used to report my fingers were better or worse ( usually much better) and then the vascular surgeon would tell me to come again in about 9 months time when he would book me in for th next infusion. I had them for five winters and only gave up when My husband developed Alzheimers and could not cope without me. I did have a small bone removed from my wrist for arthritis and since then ( touch wood) my fingers change colour in the cold, but don't have the acute pain. Good luck with yours.

3

Olá Debralee,

Eu também tenho Raynaud secundário… antes de colocar suas mãos no freezer novamente, use luvas para proteger suas mãos e dedos.

O Raynaud é uma constrição dos vasos sanguíneos, o que significa que você compromete o fluxo sanguíneo para as mãos ao expô-las ao frio.

Também tenho isso nos pés.

Atenciosamente

Judith

4

Thank you for the tip, I'll do that next time for sure!

5

Thanks Jenny I'm waiting on admission for treatment now hopefully soon before winter hits

So sorry about your husbands diagnosis wish you the best I'm sure it's very difficult for you.

Again thank you and take care

6

Olá Jenny,

Como você está? Cuidar de alguém com Alzheimer pode ser difícil… e seu marido, sinto muito.

Abraços calorosos
Judith

7

Hi Judith, Thank you for your concern and the hugs,( don't get many of those now). I am OK re the Raynauds, but am also recovering from two operations to remove my thyroid because of cancer found following a small stroke. Have just come out of hospital having had four days chemo to polish off the rest of the nasties. Just hope nothing else drops on me from on high, but I keep smiling and remain positive

8

Jenny,

Eu também… recebi radioterapia em todo o corpo seis meses após a tireoidectomia.

Você pode sentir um pouco de azul misturado. Leva um tempo para se acostumar com o novo normal.

Mais abraços

Judith

9

How nice of you, Judith.

At the moment I am so dry, coughing for England and really tired. Also want to tear the skin off my legs, but it is only  two and a bit weeks since I came home so think I am trying to run before I can walk. I know I will have to go back every three months for checks ,blood tests and scans.

I am having a phone consultation later this week so am hoping the latest blood tests and scans are OK. They have mentioned some nodules in my lungs so I must remember to check on those. 

How long did it take you to feel human again, I know everyone is different, but I would like my singing voice back? At the moment it resembles a corn crake!

I went to the dentist yesterday and just about crawled home., but the receptionist's mum is having the same operation and after treatment soon and  has been worrying about it and the radioactive iodine afterwards so she now knows where to come to get her questions answered. Pleased to be able to help

Thanks for the hugs

Jenny

10

Olá Jenny,

Abraços calorosos… a grande notícia é que, uma vez que seu sistema se estabilize, o monitoramento sanguíneo passa a ser a cada seis meses… no começo, eu fazia a cada seis semanas por cerca de três anos… e toda vez que meus anticorpos aumentavam, meu nível de estresse também subia.

Mas, novamente, boas notícias, eu me adaptei ao fluxo e refluxo e tenho experiência suficiente para ignorar os anticorpos, porque eles sempre diminuem em outro exame de sangue três meses depois.

Sua voz… talvez… você precisa conhecer Rod Stewart… risos… bem, Rod e eu tivemos câncer de tireoide juntos… sem mais Roxanne, passei para o Frank Sinatra por causa das mudanças na voz… a minha subiu bastante, era um baixo baixo antes.

Pele… sempre seca… nos EUA eu uso o hidratante ultra ultra seco da Lubiderm… eu passo bastante… onde moro, a umidade está em 12% agora, talvez até menos… temos incêndios florestais, campos que pegam fogo por causa de um raio… perdemos talvez 80.000 acres este ano… diabos, o Fort Carson treina e incendeia suas terras regularmente.

Então, nunca mais use sabão… eu uso géis de banho, limpadores de mãos espumantes e manteiga de banho com fragrância da Bath And Body Works… e água morna apenas… e apenas dois banhos por semana.

Meu cabelo voltou encaracolado nas costas e liso no topo… para mim, precisei procurar um shampoo e condicionador que funcionassem sem base de sabão… acabei usando a Philosophy… também uso para o rosto… a maquiagem foi o pior até que encontrei a It Cosmetics.

Não estou familiarizado com os produtos disponíveis na Inglaterra… desculpe.

Normal… já faz 15 anos… ainda não… meu TSH é mantido em 0,01… dito isso, você se adapta a um novo normal que inclui lágrimas que simplesmente vêm… meus verdadeiros amigos e eu conseguimos rir.

Você vai se adaptar… depois de algumas altas e algumas baixas… e se não conseguir, vou precisar do nome do seu endocrinologista…

Mais abraços

Judith

11

Thanks Judith,

You made me laugh and cry at the same time and all your advice is so helpful except that here in UK most products you mention are unknown!

I got my phone call yesterday from my key worker and she told me all my levels were going the right way and not to worry about the lung nodules as they were most probably from a previous infection, so that's one straw lifted off. She menioned thinning hair, but as I haven't lost any due to the form of radioactive treatment I had, I am not worried about that, but had it all cut off for ease of showering in hospital and it now looks like a dog's dinner. Strangely I couldn't care less as have decided it is more important to get on with life while you have it rather than how you appear to others!

I expect when it cuts off my vision I will think again, but as my best friend, who also chopped my hair, has moved away I suspect it is laziness in ooking for someone else. It is a long way from here to Bournemouth so we content ourselves with phone calls.

As for the voice , apparently all the iodine uptake is around my vocal cords and salivery glands, hence the dryness and voice. Sonya reckons another 3 months, so it is farewll to singing in my choir's carol concert ! I did go back to a couple of meetings, but when I tried to sing the pitch went down. I will go and listen to it and suck lemons in the front row to make them smile.. They will have to do without a top sop!

Meanwhile I am sleeping and drinking loads of fluids ( with disatrous results ) and catching up on knitting and craft work. I am envying you the heat as it is cold, wet and windy here and I just cannot summon up the energy to put on my down jacket and go out. Besides it is nearly dark and Fred gets nervous if I am away for too long. That's my excuse and I'm sticking to it

Love

Jenny 

12

Ziggy, meu Yorkshire, e eu estamos fazendo uma competição... vemos o seu peludo e levantamos um...

O Google é como o Mágico de Oz... pergunte ao Google pelos nomes do Reino Unido... ou pesquise no eBay

Me pergunto quão grande será aquele letreiro neon sobre a Casa Branca, ops, Casa Trump...

13

What a disaster that was and we had another on a tram near me yesterday. Seven people killed and about another  fifty horribly injured as they went through the glass as the tram slithered on it's side. The driver thinks he had a black out.

14

Oh, que terrível… tantas pessoas…
Desmaio como de álcool?

Minhas orações são por conforto para os entes queridos tão profundamente em luto… pela recuperação dos feridos… e pelo motorista que estava ao volante.

Tivemos um adolescente jovem atropelar e matar um pedestre ontem à noite… arrepiante.

Abraços

Judith