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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 dimarzio

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Posted 25 January 2016 - 08:31 AM

Hi, I'm new to this forum.  I first became ill in January 2015 with chronic insomnia and faintness. Doctors put this down to anxiety.  By August 2015  Raynauds got really bad (I had it earlier in the year but it worsened dramatically).

 

At that point a blood ANA test confirmed Limited Systemic Sclerosis which was then confirmed by my Rheumatologist following a barium meal swallow test showing esophegul dysmotility.

 

Looking back, I had been getting cold hands in the winter for about 5 years and simply put it down to getting older or walking in colder places than I previously did.

 

My hands and feet (often my arms and legs too) seem to always be cold and everything I touch (including water) feel freezing.  This and the faintness seem to have stopped my life in its tracks.  It's even hard to go outdoors now it is winter because the cold and the wind seem to get right through by shoes, trousers and gloves even though these are all thermal lined.

 

My bowels now seem to be affected as I'm needing to use a laxative every day and everything I eat and drink makes me bloated.

 

I tried rubber gloves to wash the car, do washing up etc. but the cold water seems to even penetrate these.  There seems to be so little I can now do and the whole thing seems to have progressed very quickly - I was pretty much my normal self until Jan 2015 and now feel almost useless.

 

Is it normal for a disease like this to affect someone so rapidly - less than a year to go from a normal individual to being such a useless wreck - I thought these things tended to develop more slowly?

 

The constant faintness is particularly worrying - does anyone have anything to say about this or anything that might help?

 

Thanks for reading - I will post updates as they happen.



#2 Shelley Ensz

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Posted 25 January 2016 - 11:23 AM

Hi Dimarzio,

 

Welcome to Sclero Forums. I'm glad you found us!

 

As for what's normal with scleroderma, the only thing normal about it is that takes a different course and timeline for everyone. It also typically waxes and wanes on its own accord, even without treatment, which means that it may get worse and then for no discernable reason, get better. And so on and so forth.

 

We have over 1,000 patient stories on our main site (and in our Voices of Scleroderma book series, which is based on them), and I have yet to find any two stories that appear to match. The most helpful thing of all, that most of us will tell you, is to be sure to consult a listed scleroderma expert so that you receive the best care possible. And to seek quality support -- such as our fabulous Sclero Forums!

 

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

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#3 xxx

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Posted 25 January 2016 - 05:33 PM

Hi Dimarzio

 

I too have Limited Systemic Sclerosis and was fully diagnosed in September 2015 after a rapid decline in my health very similar to yours!  I also have insomnia which causes extreme fatigue during the day. I find having a nap when you need it helps!  

 

Winter is a very difficult time for me and even when its hot outside, walking into the air-conditioned shops also causes me problems.  It is very important to wear lots of layers in the winter. The key is keeping the core of the body warm (thermals and always wearing a gilet).  Just wearing gloves will not help!  Its the sudden drop in temperature that causes the problems.  

 

Medication for Raynauds can sometimes give you a drop in blood pressure causing faintness!  I am on a slow release medication because the original medication I had caused my blood pressure to drop, caused severe headaches and faintness!  Unfortunately its a matter of tweaking medications to suit your individual needs and this takes time.

 

As Shelley said it is important to get referred to a specialist. My GP referred me to the Royal Free in London.  They have all the facilities and expertise needed to treat this condition. It does help!

 

Take care



#4 dimarzio

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Posted 26 January 2016 - 02:19 AM

They gave me a low dose of Losartan for the Raynaud's but I vomited it up 20 or 30 minutes after taking it.  Rheumatologist says he will prescribe something else but did not say what - I'm still waiting for the prescription.

 

Interestingly a friend of mine has recently suffered from kidney failure, which hospital put down to Losartan (which he was taking for high blood pressure). He stopped taking it and has been OK since.

 

I am finding that simply standing from a sitting position, I get a feeling like the blood is running from my legs and my legs and feet go cold immediately (but this feeling only lasts a short while). Going from a warm room to a slightly cooler room even sets off the Raynaud's.

 

The problem with the multitude of symptoms is that my GP and A&E simply want to put it all down to anxiety or lack of sleep (I guess it's easier for them to do that than to actually help me - or maybe they truly believe that's what it is).

 

Whilst the cold is almost unbearable (legs, hands and face freeze), it seems that the wind and rain seem to have just as bad an effect.

 

I wish I too could lie down and have a nap but when I do, I just seem to get restless.

 

Symptoms list (though some of these seem to come and go)

 

Lost 3 stone in weight over 12 months

Insomnia

Feeling faint

Lots of headaches that over the counter drugs won't get rid of

Discomfort swallowing and sometimes reflux

Bloating after even small meals and drinks

Need laxatives to make bowels work despite eating lots of fibre

Keep feeling like I need to go to the toilet

Very cold especially hands and legs

Aching hips

Aching shoulders

Aching Neck

Aching lower back

Aching eyes - eyes feel tight

Aching jaw

Tight mouth and sensitive teeth

Cramps in legs and generally aching legs and feet.

Itchy sensitive skin (though nothing visible)

Difficulty concentrating and following conversations

Difficulty reading and watching TV as it seems like my mind is consuming words but not comprehending meaning

 

Strangely, I don't have much thick skin, other than my left foot - but Rheumatologist says this is just hard skin and everyone gets it, but I've never had hard skin on my feet like this before and it feels to me thick rather than just hard.

 

One big problem is that I look fine and people can't understand why I can't do things.  I can even hold short conversations, though after a while I seem to stop taking information in.

 

The problem is knowing how much is due to the disease, how much due to insomnia and how much due to anxiety.  I've been taking Mogadon (nitrazepan) every night to sleep for about 4 months now - tried leaving it off and halving the dose and I end up with just an hour or two sleep and aching even more the next day.

 

Have managed about 30 minutes of walking every day for the last week, but it's so uncomfortable - weather has now turned wet and windy, so I'm stuck indoors again for a few days.



#5 Joelf

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Posted 26 January 2016 - 05:06 AM

Hi Dimarzio,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with so many unpleasant symptoms and that you had such a bad reaction to Losartan. (As a matter of fact, my husband takes it for his high blood pressure; no doubt the result of being married to me!! :wink: :lol: Thankfully, he's not experienced any side effects from it.)

 

We have medical pages on Raynaud's, including lots of helpful tips on medication, treatment and prevention and also Amanda's absolutely cracking videos, which I hope you'll find interesting and informative.

 

It is a common problem among scleroderma sufferers that unfortunately (or fortunately, depending on your point of view) that despite suffering many very unpleasant symptoms, we tend to look healthy and fit and so the average general practitioner is unable to comprehend how nasty the disease can actually be. As Shelley and Mothergoose have suggested, it really is beneficial to consult a Scleroderma expert, as this complex disease does require specialist knowledge and expertise.

 

Unfortunately, anxiety and stress do tend to exacerbate the symptoms of autoimmune diseases, so although I do understand how worried and anxious you must be feeling, I'm afraid it is probably making your symptoms worse. Anxiety is a symptom that needs to be addressed and minimised when one is dealing with a chronic illness such as scleroderma. Easier said than done, I know! :wink:

 

Kind regards,


Jo Frowde
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#6 dimarzio

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Posted 26 January 2016 - 05:25 AM

I do agree with you Jo, but they've tried umpteen different anti depressants and now have me on an anti psychotic.  I can't sleep even with that - the only thing that gets me to sleep is the Mogadon.  I can't take SSRI's because my sodium levels drop and most of the anti depressants also make me very dry and congested.

 

Part of the problem is limited activity, I think - with all the symptoms I've mentioned, I'm no longer very active. Up until the Raynauds came, I used to walk for at least 1 hour per day and often much more, but the Raynaud's and faintness along with the bad weather have made that uncomfortable on the best of days and impossible on days like today.

 

Like everyone else, I just have to try to make the best of it, I suppose.



#7 Joelf

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Posted 26 January 2016 - 06:08 AM

So sorry to hear that, Dimarzio; I can so understand your frustration at not being able to do the activities you used to enjoy. I was very active pre-scleroderma and unfortunately have had to curtail my exercise, as much because of my dodgy hips as anything else. I've learnt to only try and do as much as I'm able and certainly the wet, cold weather is the worst possible for aches and pains and Raynaud's. Thankfully, I've only ever fainted twice in my life; both times when I broke my wrist on different occasions!

 

I do hope that your medical team will be able to sort out your medication and give you some relief.

 

Kind regards,


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#8 dimarzio

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Posted 26 January 2016 - 06:22 AM

Yes - Hip pain.  I've had it on and off for about 20 years.  I gave up cycling in 2000 because of it, though I wish I had made more effort to keep it up.  As an alternative, I increased the amount of walking I did as I was told it was better for my hips.  However, they've got really bad in the last few months, particularly at night - the hip pain often wakes me up and is not helpful when I'm not getting enough sleep anyway.

 

I used to be able to just turn over and the pain would go, but not any more.  I lay on my right hip and that aches, so I turn over and end up with both hips aching, but I can't seem to get comfortable at all laid on my back.

 

I was wondering whether anyone on the forum might have been given drugs to help with their sleep which were effective and that they would like to share. 



#9 Shelley Ensz

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Posted 26 January 2016 - 06:40 AM

Hi Dimarzio,

 

As it happens, scleroderma isn't known for causing the all-over aching that you are describing. Generally that is due to things like depression and/or fibromyalgia. You can ask your doctor to do a fibromyalgia tender point exam (it is very fast and easy) to check that out.

 

We can't really get into a lot of discussion about sleep medications here, because of our guidelines about drug-seekers on internet forums in general. However, I strongly recommend that you ask your doctor about the possibility of having sleep disorders testing done.  There are many different types of sleep problems, and you might, for example, be trying to treat a sleep apnea problem with medications, which simply doesn't work. Plus, sleep problems are common in the general population but in scleroderma, as well.

 

: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.

#10 Joelf

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Posted 26 January 2016 - 06:51 AM

Hi Dimarzio,

 

I've had one total hip replacement and it's quite likely that I shall be needing another in the future. Sadly, most of the problem was caused by Avascular Necrosis of my hips, unfortunately brought on by the steroids I take, coupled with the fact that I used to run for hours and basically ruined my hips.

 

Thankfully, I don't have problems sleeping, so can't advise you about sleep problems from my own experience. However, I've included a link to our medical pages on Sleep Disorders and Illness and Sleep Disorders and Scleroderma, which I hope you'll find helpful.

 

Kind regards,


Jo Frowde
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#11 dimarzio

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Posted 27 January 2016 - 02:54 AM

Shelley - Yes, I do wonder whether something else, like fibromyalgia is at play.  I thought Systemic Sclerosis caused calcification of the connective tissues and the pain I have does have the feel of my ligaments and tendons hardening (joints, neck and lower back).  I've also lost so much weight that there is a significant amount of muscle loss as well.

 

Jo- Thanks, I have read the pages you linked to before and I've tried just about everything I can to help sleep.  I've tried all the sleep hygiene techniques, over the counter stuff, herbal stuff and several anti-depressants and sleeping pills on prescription.  This whole episode actually began with two weeks insomnia in January 2014 due to the fact that I was worried that my arms and legs were so cold.  Whilst inactivity was not an issue then as I was a regular walker, it certainly is now due to the severe Raynauds, faintness and winter weather.

 

I do not eat or drink within 2 hours of going to bed, but I do go to bed feeling that the tablets I take just before bed time are making me feel very bloated and have an unpleasant feeling in my stomach.

 

I worry that this illness is developing much more rapidly than I would have expected.  The Rheumatologist did specify that I had late onset Systemic Sclerosis and I wonder whether this type is inclined to progress more rapidly than the early onset version.

 

Whilst I may have misunderstood him, I got the impression that he was saying that Systemic Sclerosis, CREST and Scleroderma were all different things, whereas I got the impression that they were one and the same.



#12 Joelf

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Posted 27 January 2016 - 11:43 AM

Scleroderma is a complicated disease to understand and there are many methods used to categorise the various forms of it, which has bought about a confusing abundance of terms.

I've included a link to our medical page on Types of Scleroderma which I hope will answer your query.

Kind regards,

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#13 xxx

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Posted 27 January 2016 - 10:42 PM

Hi Dimarzio

As I see it the way forward for yourself would be to see a 'Scleroderma Expert'. Your GP will refer you (my GP got me a referral with the Royal Free within 2 weeks of me asking) and you will then have the peace of mind knowing what exactly you are dealing with! They will also discuss with you any medications that could benefit you, carry out all relevant tests and provide you with a firm plan with a Speciality Nurse to help you through this condition.

Take care.