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Undiagnosed, but terrified!

undiagnosed raynauds

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#1 NickF60

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Posted 27 May 2015 - 01:40 AM

Hi all, really glad to have found this place as you all seem very knowledgeable and helpful

 

My situation is that I've recently had numerous Raynaud's episodes affecting multiple fingers.  Prior to that I had less frequent episodes involving just one finger (always the same one).  In the last few weeks my hands often look flushed/red and there is a marked blanching effect when I touch them - they turn white when touched and it takes a few seconds for them to return to normal. My hands are still changing, and right now they look mottled reddish with paler areas.  My toes are a bit red too. 

 

I'm in the UK so I went to my GP yesterday. She ordered some blood tests which will be done next week.  She said a referral to a rheumatologist looks likely.  I have to agree!  The way my hands and feet look I am sure I won't come back with a clean set of blood results.  

 

In my mind I have scleroderma, or something very close, and it's worrying me sick.  I am 55, but my family are still young and I fear for the future.  I have a bit of general health anxiety.  At the first sign of trouble I tend to google everything, and the results can be very frightening.  That said, I am unlikely to stop researching online as gaining knowledge makes me feel a little more in control. 

 

There's lots more I could say but I'll leave it there as it's my first post.  Stay well everyone

 

Nick



#2 Joelf

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Posted 27 May 2015 - 08:44 AM

Hi Nick,

 

Welcome to these forums!

 

I'm sorry to hear that you're experiencing possible symptoms of Raynaud's. I have Raynaud's, but it tends to make my fingers go completely white from the knuckle up to the finger tips; rather than making them red. The colour only returns after the circulation comes back to them and then they can be painful.

 

I can understand how worried you're feeling and although the desire to google your symptoms is almost irresistible, it really is not a good idea. Unfortunately the internet is full of scary, half baked theories regarding Scleroderma, which is an extremely difficult disease to diagnose correctly, as it can manifest itself in lots of different ways and affects all sufferers differently. Many of the symptoms can relate to other health problems, which can mimic Scleroderma.

 

I'm pleased to hear that you've seen your general practitioner and should she think it necessary,  you could then be referred to a Scleroderma specialist. Although you're having blood tests done, they're by no means conclusive and you really do need to be diagnosed on your clinical symptoms as well. I've included a link to our  Checklist of Scleroderma symptoms, which you may find helpful to download and take with you to your next doctor's appointment.

 

I would just say that even if your worst fears are realised and you are diagnosed with Scleroderma, it's by no means the end of the world. I have systemic Scleroderma, but have every intention of living to a ripe old age (if only to get my money's worth from the state pension!! :wink: )

 

Kind regards,


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#3 Amanda Thorpe

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Posted 27 May 2015 - 12:32 PM

Hello Nick

Welcome and you've got a very proactive GP. That's not always a good thing though, ironically! Well, I guess it's better than one that does nothing.

Many people have primary Raynaud's but a small percentage of people with Raynaud's have scleroderma. Yes it can be a red flag for scleroderma which may well be why your GP is referring you to a rheumatologist. Unfortunately there is no one test to rule scleroderma in or out.

Jo's given you some great links and I can attest to the fact that blood tests aren't an indisputable indicator of this disease. I have systemic scleroderma but my blood work is negative, always has been.

Scleroderma should only be diagnosed based on clinical symptoms and according to your post you only have one but as you say, you've not covered everything.

By all means research but stay on this site, it's the best one and keep posting.

Take care.


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#4 Shelley Ensz

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Posted 27 May 2015 - 01:46 PM

Hi Nick,

 

Welcome to Sclero Forums. I'm sorry you have Raynaud's and that you are worried about having scleroderma.

 

I suppose we could advise you until we're blue in the face to "not trouble trouble until trouble troubles you" and it wouldn't help a whit. What I would advise though is to take a really serious look at whether internet searching on this is currently making you feel better or worse. It somewhat depends on your approach to it.

 

I *strongly* recommend trying to focus the majority of your research right now on just Raynaud's. First of all, you know you have Raynaud's, so it is a very solid issue to look into.

 

Secondly, there's an awful lot to learn about Raynaud's!  This is the time when you should be investing a lot of time and energy in learning how to avoid attacks and how to recover from them.  Ideally you will be buying gloves and warmers, and trying out every suggestion for rewarming from an attack as quickly as possible. I'm hoping by the time you see the rheumatologist, you will have pretty much memorized our Raynaud's pages.

 

The thing is, Raynaud's occurs all by itself about half the time. The rest of the time, it can be a symptom of other diseases -- even anxiety by itself -- and it is not exclusive to scleroderma. Worse than that, anxiety alone can cause attacks of Raynaud's, whether or not there is an underlying illness. So it behooves all of us to learn every trick in the book for managing our anxiety, which is a really cute trick, isn't it, when it is sometimes the harbinger of very serious illnesses.

 

It helps me adjust to some things by just repeating to myself, "It is what it is."  That means, it is what it is, it is not what I imagine it to be, or catastrophize it to be, or what I am even just slightly fearful that it will be.  Worrying does not prevent trouble from happening to us, anymore than staring at a computer page will help it download faster, yet many of us cling to it anyway like it is a magic wand that will prevent the worst from befalling us.

 

If you feel like you're over the cliff with worry, and normal measures or our brand of been-there-done-that wisdom isn't helping enough, then consider seeing a counselor. It's very handy to get counseling with the onset of any illness, as we can learn new ways of handling stress and making an optimum adjustment to a perplexing situation. 

 

In your case, it is going to be dealing with uncertainty, even fear of the unknown, until you know more. And odds are, it could be a very long time before you have any solid answers, or are sure that you are out of the woods from anything worse happening.

 

Anyway, we care. We're here for you. And I'm positive you can find some way to make lemonade or perhaps even  lemon cookies, out of this lemon.

 

:hug-group:


Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Ron

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Posted 29 May 2015 - 01:49 PM

Nick,

I would not sweat it, wait until your blood work is done, that should give the doctor an idea what's going on.  My uncle had Raynauds with no underlying disease.  I have been living with Raynauds since 1984, and diagnosed with Scleroderma in 1987.

There is a lot of info on the net that will scare the wits out of you if you try self diagnosing yourself.  Keep those fingers warm, you are a prime candidate for finger ulcers, they are painful and not fun.  If your fingers are always warm, you should not experience any at this stage, anyways.



#6 NickF60

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Posted 31 May 2015 - 11:05 PM

Hi everyone, many thanks for all your replies, it really is appreciated.  I hear what you say about not self-diagnosing, but it looks to me like there's other things happening to me, not just Raynauds.  When I exercise or drink alcohol my hands and feet flush red and I get a burning sensation, particularly the feet.  It's not too painful at the moment, but I believe this is erythromelalgia.  Three days until I see the rheumatologist, and I'm getting a bit stressed if I'm honest.  I hate to think what genes I've passed on to my kids, and they're still so young.  I need to stick around for a while yet! Appreciate your support everyone

 

Kind regards

Nick



#7 Joelf

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Posted 01 June 2015 - 09:01 AM

Hi Nick,

 

As you're feeling very stressed and worried about your rheumatologist's appointment in three days time, I would suggest that you write down everything you wish to explain to him and list any queries you might have. The problem is that when you're feeling very anxious, it's difficult to concentrate on your rheumatologist's advice and information and very easy to miss some of the things he says. We also recommend, if possible, taking a friend with you, as two pairs of ears are more able to grasp the salient points.

 

We have a very useful page Preparing for Doctor's appointments which gives lots of tips have come from our forums as people discussed their upcoming appointments with their specialists.

 

Kind regards,


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#8 Shelley Ensz

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Posted 02 June 2015 - 07:32 AM

Hi Nick,

 

I hope you found Jo's link to Preparing for Doctor's Appointments useful.  Is tomorrow the big day, or have I lost track of goofy internet time?  Anyway, I'm thinking of you and I hope that your appointment answers at least some questions for you.

 

:hug-group:


Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 Ron

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Posted 02 June 2015 - 07:44 AM

Nick,

 

I have had 3 rheumatologist over the past 25 years, they are very companionate. Write your questions down like others suggested so you don't forget to ask your questions.  Having another person with you is a good idea like someone already said, two pairs of ears are better than two.  If you forget some questions you will have to make another appointment to see him or her again, so like I said write them down.

I am willing to bet you will come away relieved after speaking to the rheumatologist.



#10 Amanda Thorpe

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Posted 02 June 2015 - 12:52 PM

Hello Nick

 

Have a look at  my previous thread about erythromelalgia and Button's thread as its been discussed before. It's a disease in its own right as well as being a "friend" joining others even Raynaud's which would appear to be its polar opposite.

 

I suffered a lot from erythromelalgia when newly diagnosed with scleroderma. It affected my hands, feet and legs, especially my thighs. When affected these areas would be bright red and so hot that you could feel the heat coming off of them without even touching them. Although its caused by the over dilation of the blood vessels, medication that causes blood vessels to dilate, as well as blood thinners, can help. The idea is that if you keep the blood vessels open, there is less likely to be a sudden dilation and the thinner the blood the better the rush. Yeah, sounds weird I know but they helped.

 

I hope this helps and take care.


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#11 NickF60

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Posted 04 June 2015 - 06:23 AM

Hi all, thanks to everyone who has looked in since I was last here - it' appreciated! 

 

I saw the rheumatologist today and it's a case of so far, so good.  We don't have the blood results yet but the physical exam went well. He did a few things, including a close inspection of my nailfolds. All normal was the conclusion. 

 

One interesting thing was that we talked through my Raynaud's episodes in detail and the doctor is of the opinion that I may not actually have Raynaud's. The one exception is my right index finger - I described to him how it turns pure white, and that there is a very clear distinction between white skin and pink skin part way along it. 

 

He agreed that that sounds like Raynauds, but this particular finger is one that suffered trauma many years years ago.  I had an accident with a scalpel blade that went very deep and damaged a lot of nerves.  He therefore discounted that one and asked me to describe exactly what happens to the others. 

 

To cut a long story short, his view was that what I was describing was a fairly 'normal' response to cold, a response of someone that doesn't handle cold conditions very well, but not the extreme response expected in a Raynaud's sufferer.  He may be right.  He did agree that circulation in my hands is a little sluggish (he talked about capillary refill times etc), but not dreadful. 

 

The broad conclusion was that I may have some ongoing health issue, but it's probably not in the rheumatology domain. The plan is to review once all the blood tests come back and take it from there.  I will keep you posted!

 

Nick    



#12 Joelf

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Posted 04 June 2015 - 09:19 AM

Hi Nick,

 

I'm pleased to hear that your rheumatologist's appointment was so positive and I hope that this has set your mind at ease to a certain extent.

 

Please update us when you get the results of your blood tests.

 

Kind regards,


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#13 Buttons

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Posted 04 June 2015 - 08:33 PM

Hi Nick

 

That sounds to have been a very good visit to your consultant and hopefully its eased your mind.

 

Buttons



#14 Shelley Ensz

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Posted 10 June 2015 - 11:43 AM

Hi Nick,

 

All things considered, it sounds like you had an excellent and sensible evaluation. I'm delighted for you that you are probably out of the woods for scleroderma. Please let us know what you find out from the blood tests.  I'm hoping you test out "all clear".

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#15 NickF60

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Posted 10 June 2015 - 09:57 PM

Hi all, thanks again for your comments.  I spoke to my GP a few days ago and she didn't have all the blood results but the ones she did have were normaI. I will speak to her again shortly to confirm the remaining results, but she said she would call me if anything interesting showed up, so I'm guessing that hasn't happened. 

 

One thing that has happened is a new Raynaud's attack.  After my rheumatologist appointment last week I was almost convinced I didn't have Raynauds - most of the 'events' I reported were in a finger which had previously suffered trauma.  I suppose I heard what I wanted to hear - "you probably don't have Raynauds".  However, last night I went for a short walk.  Temperature was about 14C, 57F, and I became slightly chilly in the body as there was a breeze.  As I walked along I was aware of a strange feeling in both my small toes, it kind of felt like my socks needed adjusting.  When I got home the small toes on both feet were deathly white and numb.  A little bit of manipulation got the blood flowing quite easily, but as far as I'm concerned that was definitely Raynaud's!

I am going to report back to the rheumatologist and tell him about that episode.  My appointment is in two weeks.  I do worry how this is going to pan out, but at this stage I suppose I should take heart from the fact that blood results and nailfolds are normal.  I have read some papers that say Primary Raynaud's can be a legitimate diagnosis, even in older patients (I am 55), I'm hoping that nothing else develops!

 

Nick



#16 Joelf

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Posted 11 June 2015 - 03:09 AM

Hi Nick,

 

As you surmised, it's perfectly possible to have Primary Raynaud's without developing Scleroderma, or any other autoimmune disease and as you're seeing your rheumatologist in two weeks time, I would certainly mention it to him, but meanwhile, try not to worry too much.

 

Do let us know how your appointment goes.

 

Kind regards,


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