Raynaud's & Scleroderma Association

About to get confirmation that I am suffering from Raynauds

strained
Posted by strained
11 Feb 2013
11 comments

I am having a hard time typing this as the tips of my fingers are protesting at the pain and coldness. Tip of my nose too is starting to join in... See I normally sit with a hot water bottle at work when I'm having to be at the desk typing such that I alternate between typing and warming either the nose or fingers. Initially this drew stares as I took to keeping my hat on top of my head and placing the water bottle to my face as if I was inhaling its scent. The reality was that I was seeking to stop my nose making me resemble that of Rudolf the reindeer...

These last couple of weeks at work have been awful. We recently moved to new modern premises that are open plan. They are spacious and airy with a 'gold-fish-in-a-bowl' feel to them. Then bain of my working life is the air-con! It is never the right temperature given it is for an open shared space.

I have an appointment to see my GP this week to discuss what steps I can take to manage what is thought to be Raynauds. Nifedipine has been one of the choice drugs recommended and advised to take it just during the winter months as a start, to see how this will pan out. I am not very keen on taking drugs of any sort and would welcome any alternatives - albeit can't see what I can put on my nose to stop it feeling so cold or what I can wear whilst typing! For the interim, it's a balancing act of holding a cup of warm water or a hot water bottle. I wonder... does anyone else get this odd feeling of cold air blowing on top of your tempo or nose? I reckon I was a lizard in my former life!

Anyways, all the best for the week ahead.

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11 comments

Pipsmum
Pipsmum
11 Feb 2013
That sounds miserable - but I can empathize!

I work in an open plan office, but have an electric fan heater under my desk, which helps a lot. My feet are the worst affected, so I wear Ugg boots in the office, and make sure my core body is kept warm. For my hands, I often wear fingerless gloves, as I can type in them without any problems. My nose is kept warm by the air from the fan heater.

My biggest problems is that I have Sjogren's syndrome, so the fan heater makes my dryness problems worse, so I constantly use eye drops and artificial saliva.

Good luck with the diagnosis - and please don't worry about taking the drugs - if they give you some quality of life, they are worth it. I take Nifedepine all year round, and couldn't manage without it.

Kathy

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LisaB356
LisaB356
11 Feb 2013
I thought I was the only one who had the red nose thing going! For the past several months (after summer ended) I look like I've just come in from the cold...constantly! My nose is bright red. In terms of medications for it...the pressure pills I was prescribed did nothing except make me lightheaded. So unfortunately for now all we can do is suggest ways of coping. I like your idea of keeping a hot container of fluids nearby. I'm going to start practicing this myself! I also have a pair of Uggs that I wear inside and outside because they're the only things that keep my feet warm! My husband knew it was worth it to pay that much for them...hope you can reap the benefits of a pair, too. You won't be sorry. Good luck and maybe try that portable space heater, too. I have three in my house -- one in each room I usually hang out in.

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Winter64
Winter64
11 Feb 2013
Hi, I have exactly the same problems, I usually have my hand curled around my nose trying to keep it warm! Our office is open plan and air con, I have a heater (they bought it about £20 from argos) and I stand it on my desk so I can pop my hands in front of it and it also blows on my face. I do also use fingerless gloves when its really bad so I can type. I dont take any medication so cant advise on that. Although you didnt ask, what I also find helpful at home are microwave hot water bottles I tuck them inbetween my TShirt and sweatshirt and microwave boots for indoors, they have little bags in the top that you can take out and microwave so you can also still walk round. Have also been known to have a little fleece blanket over my knees a work, which does help.

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overnighthearingloss
overnighthearingloss
11 Feb 2013
It can be your ears as well. Sometimes there are also overlaps with other auto-immune issues. Hopefully you will be being checked carefully.

Porridge is something that can give you a good start to the day. You need to keep yourself warmer than others as Raynauds seems to be related to blood circulation issues.

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strained
strained
12 Feb 2013
Thanks to all of you...unfortunately I can't use an extra heater - (health & safety regulations etc..) but I've taken to taking walking breaks, going up the 5 floors to get the circulation going has helped my symptoms somewhat...fingerless gloves actually make my finger tips swollen and v.painful - Mitts are the only gloves that work. I will definitely try to have some porridge mid-morning too - can't take anything heavier than fluids fist thing. My appointment is this evening with the GP...shall keep you updated.

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strained
strained
14 Feb 2013
Finally got the diagnosis confirmed. Bad news is I do suffer from Raynauds, good news is that at present it is possible to manage it without medication as long as I stick to some if not most of the practical tips of keeping warm. The other surprise I learnt at the GP was the discovery that in some extreme cases, viagra has been prescribed and been known to help - not sure if anyone on here has come across such. Aside from possible side effects, the GP seemed not too keen on prescribing this due to cost.

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Ravenshade
Ravenshade
14 Feb 2013
O_o I think as a male, I'll be staying away from that... but really i am surprised about the viagra. There are cheaper alternatives that would do the same thing I would think though. For instance the generic versions.

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strained
strained
14 Feb 2013
:) No more so than I was - but apparently Viagra is one of the most safest drugs for circulation issues. It was initially aimed to treat such.

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Ravenshade
Ravenshade
14 Feb 2013
Yeah...but what would I do with the near constant erection?? O_O

Well...probably wouldn't be 'that' much of a problem XD

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strained
strained
14 Feb 2013
counter-effect with another drug hoping you don't get accused of all sorts!

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Lindalo1
Lindalo1
23 Feb 2013
I have Lupus, Scleroderma, secondary Raynaud's, and Sjogren's Syndrome along with several other autoimmune diseases. I guarantee that if you've been diagnosed with one, there is at least another one that hasn't been diagnosed. I've had Raynaud's as long as I can remember (I am now 60). I've been hospitalized with kidney disease of unknown origin, chronic pancreatitis, lung disease, etc. all at different times in my life. Several years ago the doctors put 2&2 together and did some testing and discovered the above diagnoses. Unfortunately, there are quite a few things that can be attributed to the Scleroderma. My lungs, liver, esophagus are all scarred due to it. The most grief I've had is from the digital ulcers. They are so painful, I've been tempted to cut them off myself. My cousin had several fingertips and toes removed due to the pains. I could never understand how she could go that far until I got them. I did use Viagra quite a few years ago but had to have a team of specialists put in a special request because it was only available for men at that time. It was quite expensive and I had to pay for it out of my pocket but it did save my finger. I think it's scandalous that they will pay for medication for a man to get a hard-on but won't allow it to be used to save someone's digit. I did eventually get reimbursed for it. I'm currently on amlodipine, plaquenil, prednisone, revatio, low dose aspirin, chlorthalidone, etc., etc., etc. however none of them ease the pain of the ulcers. Anybody have any suggestions?

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