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#1 cornishgirl

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Posted 15 May 2012 - 10:18 AM

Hi everyone. First up I should say I haven’t yet been officially diagnosed with Scleroderma but am under the care of a Rheumatologist. I live in Cornwall, 29, married with 2 young children with a stressful job in the public sector.

I started to experience problems over a year ago. It started with symmetrical joint pain, fatigue, feeling really cold all the time (my whole hand would go pale but the tips of my fingers would turn bright red on exposure to the cold) but also experiencing periods when my hands, face and ears would become hot, red and burning. Since these initial symptoms I am now experiencing elbow pain, numbness in my little fingers and base of palm, dry eyes, itchy skin and heartburn.

I was referred to a rheumatologist who examined me and did lots of blood tests. During the examination the rheumatologist noted telangiectasia’s on my hands – 1 on my right hand, 4 on my left and slight skin thickening at the top of my nose (which I had put down to too much sun).

My ANA came back weakly positive 1:80 in a homogenous pattern. When I went for the follow up appointment with the rheumatologist said he said he had ordered the ANA test as he had a clinical suspicion of scleroderma due to the thickened skin, poor circulation and telangiectasias on my hand but said he could rule it out as the ANA pattern was homogenous and that was more specific to SLE.

I was basically sent away and told to get on with my life – easier said than done. I have repeatedly gone back to my general practitioner and also emailed the rheumatologist explaining my symptoms and how they are affecting me day to day – they prescribed eye drops, omeprazole and anti depressants! They say I haven’t got Raynauds as the colour changes aren’t consistent with Raynauds – I don’t agree with this….coupled with the fact I have telangiectasias on my hand surely already would point towards a Scleroderma (CREST?) diagnosis. Is it normal to have telangiectasias on the hand without an underlying cause? Would SLE still be a more realistic diagnosis – I didn’t think telangiectasias were seen in SLE?

I really feel I have been abandoned by the medical profession and that no-one is taking me seriously. It’s affecting my day to day life, my children, my husband….the list goes on. I’m not sure where I should turn to next. I am fearful of Scleroderma and how it may develop, I am scared what the future holds – I’m only 29. Obviously I have read lots of horrible stories (mostly from the US to be honest?!) about where this could potentially lead. All my symptoms at the moment I can deal with (they are relatively mild) – I think what is fuelling my anxiety is the fear of the unknown, not helped by the fact I am not being monitored by anyone. Do I have to wait until something really goes wrong? I suppose what I am asking for is both advice on where to turn and also for people to give me hope that if and when the diagnosis is confirmed that there is life after Scleroderma. How normal a life can I expect to lead. Apologies for the long winded ramble.

#2 Joelf

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Posted 15 May 2012 - 02:34 PM

Hi Cornishgirl,

Welcome to these forums!

I'm sorry to hear that you're experiencing so many unpleasant health problems. Unfortunately auto immune problems and especially Scleroderma are very difficult to diagnose as they tend to affect everyone very differently and do present themselves with many different symptoms. Having a positive blood test doesn't necessarily mean that a diagnosis of Scleroderma can be made as many of our members can testify. I've included a link to Scleroderma and Lupus overlap to give you some more information. We do recommend that you try and get a referral to a Scleroderma specialist, as sadly many general rheumatologists do not have the knowledge and expertise to deal with this complex disease. The Scleroderma rheumatologist can then take into account the clinical symptoms you're presenting as well as the blood test results.

I've also included a link to Telangiectasia which I hope you'll find helpful and would advise that you don't read unpleasant and worrying scare stories about Scleroderma on the internet until you really know for sure whether you are going to suffer from the full blown disease (easy to say, I know! ;))

I hope you will keep posting and let us know how you get on.

Kind regards,


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#3 Amanda Thorpe

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Posted 15 May 2012 - 04:52 PM

Hello Cornishgirl

Welcome to the forums!

Scleroderma can cause telangiectasia on the skin of the face and the hands and their presence there counts as one of the criteria for diagnosing CREST syndrome.

Raynaud'sdoes not always cause the spectrum of red, white and blue, I have mild Raynaud's and have no colour changes. How do I know I have Raynaud's? I was diagnosed by thermography and capillaroscopy at the Royal Free London (centre of excellence for scleroderma in the UK) your rheumatologist would have told me I don't have Raynaud's.

Omeprazole is standard treatment for reflux, I am on it myself.

Have a look at our videos for symptoms of scleroderma and diagnosis of scleroderma and difficult diagnosis of scleroderma. Unless you get yourself under the care of a scleroderma expert you could be chasing your tail for years trying to get a firm diagnosis by which time you could be very, very ill. Of course I have no medical experience at all and have no idea whether you have or ever will have scleroderma or any other autoimmune disease.

Take care and keep posting.

PS: My ANA & SCL-70 are and always have been negative and I have diffuse systemic scleroderma and Raynaud's.


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#4 cornishgirl

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Posted 15 May 2012 - 11:58 PM

Thanks for your input. How would I go about getting referred to a Scleroderma expert? I see the nearest is in Bath - a 3 hr drive - which isn't a problem at all, but not sure how to go about it.
Thanks

#5 Joelf

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Posted 16 May 2012 - 05:51 AM

Hi Cornishgirl,

Your first port of call would be your general practitioner. In my case, I was referred to a local lung specialist (I have Sclero lung involvement) who then referred me to a top lung hospital (thankfully) and then I was referred to The Royal Free Hospital by them for a rheumatologist's overview. By then I had already commenced my treatment, so in fact did things back to front.

You may find you'll have to be quite proactive with your general practitioner as some are reluctant to admit they can't deal with such a complex disease and some of our members have found that they have to get past the egos of their local rheumatologist's/ doctors in order to get the referral they need.

Kind regards,

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#6 Sandy B

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Posted 16 May 2012 - 06:09 AM

Hi Cornishgirl,

Just wanted to say hello and welcome to the forums, I think Amanda and Joelf have given you some good advice and links to take a look at.

The only thing I can add is, what you are feeling at the moment is perfectly natural. I have to admit I was completely freaked out when I was first diagnosed with systemic sclerosis and it was going on line and reading about `all the possibilities' that scared me most, but that is just what they are, possibilities, they are not a given, we are all different and you may not go on to develop any further symptoms. I'm by no means trying to down play things, but trying to reassure you that if you are eventually diagnosed with scleroderma it may not get any worse than it is at the moment. The scariest thing about scleroderma is definitely the fear of the unknown and what the future may hold, but in time you learn to live with it and you learn to take things as and when they come and to be your own advocate.

Finally, I have to say, Joining this forum was the best thing I ever did, it made me realise I am not alone with this disease and life really does goes on.

All the best

Sandy B

#7 cornishgirl

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Posted 16 May 2012 - 08:07 AM

I went to see my general practitioner today armed with a list of Sclero specialists. I asked to be referred to my nearest one (in Bristol actually) and she said she would write a referral letter. Hopefully am getting somewhere now. Thanks

#8 Amanda Thorpe

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Posted 16 May 2012 - 03:59 PM

Cornishgirl, it will be the best thing you ever did!

Take care.
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#9 cornishgirl

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Posted 08 June 2012 - 10:43 AM

Me again – hope everyone enjoyed the Jubilee! You will be pleased to hear I have got an appointment at the end of this month with a scleroderma specialist based in Bristol – so I don’t have to wait too long, for which I am grateful. However…..

Interestingly about a month ago, just before I asked my general practitioner to refer me to a Sclero expert, I sent my local rheumatologist photo’s of my hands and feet when really cold and also when they go burning hot. I arrived home today to find a letter from the rheumatologist to whom I had sent the photo’s saying they show changes consistent with Raynauds and erythromelalgia….but that he still didn’t think it was indicative of an underlying systemic condition. He himself had noted telangiectasia on my hands and face and skin thickening on my face and the reason I had been referred to him by my general practitioner was symmetrical joint pain and fatigue. My ANA was positive, albeit weakly and I just can’t understand how he can say nothing is going on! I am really hoping the sclero specialist will take my symptoms a bit more seriously!

Apologies for the angry tone of this – I just feel really let down (and a bit scared). Bristol is over 2 hours away from me here in Cornwall and it would have been so much easier if my local (still 40 miles away!!!!) rheumatologist was more helpful! Thankfully I have pulled myself out of the deep hole I was in earlier this year and am now enjoying life again , my children have got their mother back (finally!) and my hubby - well he still feels a bit neglected, mainly due to resuming another passion of mine - food blogging. I am also seeing an alternative therapist and continuing to take the antidepressants my general practitioner has prescribed, which I think have helped my mood greatly.
Some days are still a real struggle though, when my joints don’t want to play ball and I feel so cold I may as well be in a freezer – the rubbish weather is definitely not helping! I hope we have a flaming July otherwise I may have to relocate to the Mediterranean!
As an aside, I have also seen a dermatologist who says that laser treatment could help get rid of the telangiectasia on my face and also improve the patches of skin thickening. I am a bit concerned though as I know laser therapy promotes collagen production, something I guess that would not be helpful. Has anyone undergone laser therapy on their face successfully?

Well, that’s it for now!

#10 Amanda Thorpe

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Posted 08 June 2012 - 01:33 PM

Hello Cornishgirl

I have erythromelalgia although I have not had any symptoms for awhile. I had it worse the first 18 months from diagnosis of scleroderma, it gave me bright red hands, feet and legs, you could literally feel the heat coming off in waves and then there was the prickling! I also have Raynaud's and find it bizarre that you can have a disease that affects the same part of the body causing constriction of the blood vessels and another disease affecting the same part of the body causing over dilation of the blood vessels. Really?

Diagnosis of scleroderma can be difficult and long but is best made based on clinical symptoms, history, test results, biopsy and blood work which usually supports a diagnosis, or lack of, rather than being the basis of a diagnosis.

Well done for climbing out of the hole, many of us find ourselves in one at some point. Maybe you could share with us how you did it and what you found helpful?

I really hope your appointment with the rheumatologist goes well. Remember to write questions down and take someone in with you to remember what you won't', It's your consultation so you make the most of it.

Take care and keep posting.
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#11 Joelf

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Posted 08 June 2012 - 01:45 PM

Hi Cornishgirl,

I'm very pleased to hear that you've got your appointment with a Scleroderma specialist.

I know that it can be very frustrating that your local rheumatologist has been rather dismissive of your worries; this is, of course, why we do recommend that you consult a Scleroderma expert to deal with this complex disease and hopefully the specialist you see at the end of the month will be able to give you more help and advice.

I've included a link to Telangiectasia treatments which I hope will give you more information as I have no experience of laser treatment myself. It's quite likely though, that some of our members have used this treatment and may be able to give you some first hand advice.

Kind regards,

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#12 Amanda Thorpe

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Posted 09 June 2012 - 01:09 PM

Hello Cornishgirl

I forgot to say that telangiectasia are dialated superficial blood vessels that can occur in rosacea, certain systemic diseases like scleroderma, as part of inherited disorders although most cases are of unknown cause.

Scleroderma can cause telangiectasia on the skin of the face and hands and having them here counts towards a diagnosis of CREST. They frequently occur on the trunk and extremities of healthy people so any there do not count towards a CREST diagnosis.
Telangiectasias can be covered with makeup or a dermatologist can remove it with sclerotherapy, laser, or PhotoDerm.

However, "Second Generation" Telangiectasia (ones that return after the first treatment) are often resistant to treatments, so we highly recommend that you (and your dermatologist) read about that situation before starting any course of treatment for telangiectasia. Telangiectasia can be treated by a dermatologist and makeup such as Dermablend Corrective Cosmetics and Jane Iredale mineral based make up can be used to cover telangiectasia.

There will soon be a video available to watch about telangiectasia as well!

Take care.
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#13 cornishgirl

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Posted 10 June 2012 - 01:59 AM

Thanks Amanda and Jo. In terms of how I pulled myself out of the hole I was in....well that was mainly down to my mother - she is very wise! She basically said that at this moment in time none of my symptoms were stopping me leading a normal life - yes I get fatigued, yes my joints hurt, but I can largely carry on as normal. What I was worrying about the most was the fear of the unknown, not the here and now. So, I came to conclusion that I may as well enjoy my life and my kids because no-one knows what is in store in the future. Like my mother keeps telling me - I might be run over by a bus tomorrow! (not likely in Cornwall as we have about 2 buses a week where I live but nevertheless.....)

In all honesty, what really got me down and depressed was reading all the scary stories on the internet. Thankfully I found this forum and I know there is hope.

In terms of the telangiectasia, I have them on my face, palms, fingers and new ones are appearing on my arms now too. I guess I will have to wait to see what the specialist says when I see him at the end of the month. Will keep you updated!

#14 judyt

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Posted 11 June 2012 - 03:08 AM

Hi Cornishgirl,
Yes you will find that by the time your kiddies are grown you will be wise too. It comes with the territory!! You might also realise that things like Telangectasia really don't matter too much, they don't actually bleed or hurt and there are more important things to worry about in this life.

I understand your concern about what might happen in the future, but at least you have the benefit of specialised treatment available to you, and it could be that nothing much changes for the next few years. Thank goodness you found this forum and you can stop reading the scary stories. I didn't get a diagnosis until I was 59 when all the damage was done and I had been unaware all those years, of what might happen.

I have to admit to reading some of the scary stories myself and since I have no parents left, it was my brother who pointed out that I had got this far without anything very major going wrong the chances of having a crisis were probably long gone. Hope your visit to the specialist goes well.

JudyT

#15 Amanda Thorpe

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Posted 12 June 2012 - 04:29 PM

Hello Cornishgirl

Oh the scary stories are excellent, better than any horror film! In the beginning I read everything, the more gruesome the better, also went a'googling the worst photo so that I'd know the enemy! Of course none of it ever happened!

Best to stay on reputable sites like this one, we don't duck the issues and openly talk about death and disfigurement but not in a hysterical, alarmist way, in a realistic human way. Maybe you'll submit your storyto our selection of over 1000+ stories. I didbecause it's the stories that got me onto this site in the first place and, once submitted, you can update your story from time to time.

Take care.

Take care and keep posting.


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#16 cornishgirl

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Posted 14 June 2012 - 12:01 AM

Jo - thats it why I am sticking to this site. I'm not doing myself any good googling all the possible ramifications so have stopped that!
Judy T - In terms of telangiectasia - I know they really aren't worth getting worked up about, but when new ones seem to be appearing every week I just wonder when they will stop! I think I will definitely get some of the larger ones on my face lasered, once I get the go-ahead from the specialist.

As an aside I have a question concerning sores. For the last year or so I have been getting sores on my scalp (big red raised pimples) that are quite...well, sore! Does anyone else experience this? Not sure if it is connected.
Also I'm pretty sure my hormone levels have gone awry due to very painful periods, changes in menstrual bleeding patterns and excess hair where where a lady doesn't really want it...if you get my drift. My Doctor is reluctant to test hormone levels as I'm only 29 but something is definitely up. Anyone else had hormone issues related to autoimmune connective tissue diseases?

Right must go and take 5 yr old to school and start on the pile of washing created by my 'reluctant to be potty trained' 2 yr old.

Ooops not Jo - it was Amanda I was replying too. Too early!

#17 Joelf

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Posted 14 June 2012 - 11:59 AM

Hi Cornishgirl,

Hormones and chromosomes have been found to contribute to the development of autoimmune diseases. This may explain why women are more susceptible to autoimmune diseases than men. I've included our link to Hormones and Chromosomes in Scleroderma to give you some more information which I hope you'll find interesting and helpful.

Regarding the sores on your scalp, thankfully, I've not experienced them myself, but have included a link for you on Scleroderma Skin Involvement . I would suggest that they might be connected to the Telangiectasia that you're experiencing (however, that's just my opinion; I have no actual medical knowledge apart from a now out of date first aid certificate! ;))

Kind regards,

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#18 judyt

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Posted 14 June 2012 - 02:40 PM

Hi Cornishgirl,
I used to get pimples on my fingers. They were red raised lumps but instead of having pus like a zit they had a milky fluid in the top. They were quite sore and annoying and I couldn't figure out what they were until I was told about Calcinosis and then I decided they could be to do with that. The milky fluid looked like it could be a calcium suspension. Anyway after a year or two they went away and I have never seen them since.

My Calcinosis consisted of about 3 granules of hard lumps on my elbow once. That was the sum total of my experience there, but it is counted as a definite result for the C in CREST.

This disease is certainly a puzzle sometimes and the fact that everybody's experience is so different makes it even more so.

Best wishes from a little bit of Cornwall on this side of the globe.

JudyT

#19 cornishgirl

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Posted 21 June 2012 - 10:55 AM

Hi all,

My appointment with Sclero expert is on Monday and I rang the hospital in Bristol today to confirm. I asked how long the appointment would be and she said 'up to half an hour'. WHAT, I am driving over 2 hours to get there (for 9am) and I'm pretty sure I'd still be explaining all my symptoms to the doctor at 30 minutes. Now wondering whether to bother and feeling a bit deflated. Maybe I should take my bike lock and chain myself to his desk.

Also, just wondering if there are any pertinent questions I should be asking him. I definitely want to ask him about the possibility/safety of laser therapy on my face for the telangiectasia's but apart from that I'm not sure. I don't want to appear to be telling him how to do his job but I really want a nailfold capilliaroscopy done - or should this be conducted as a matter of course anyway?

Finally, for the last few days, as well as tingling and numbness in my hands I've also been experiencing it on the right half of my head (almost constantly). It feels very strange! Has anyone had this kind of sensation in their head? I'm sure my husband and mother think I make up a new symptom every day. One day its the cold that is really bothering me, another day it might be my joints playing up and today for example its the tingling/numbness. It is really difficult to explain to them how I feel though and how things keep changing. How do other people go about explaining Sclero or any Connective Tissue Disease, to family and friends?

I'll let you all know how I go on Monday.

#20 judyt

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Posted 21 June 2012 - 01:14 PM

Hi Cornishgirl,

When you asked the nurse about the appointment time all she would have to go on is the average length of time that they allow for each patient. My general practitioner for instance, allows 15 minutes - I don't think I have EVER spent only 15 minutes talking to her. Crikey, we wouldn't even get through what has been happening since last time I saw her, in that time. As for hospital visits, recently when I went for a clinic appointment the doctor was running at least an hour late, because some people need longer and by that time in the day he had got well behind.

Just as well your apointment is 9am because at that time you must be at least first or perhaps second on the list so he shouldn't be too far behind by then. As far as knowing what to ask for, my experience is that they have a set routine of what needs to be checked out and then after that the things you would like to have done might need to be asked for. The nailfold changes can often be seen just with a magnifier for instance so it might not be necessary to have a more sophisticated test.

Take a list of your questions and remember to ask to be included in the list of those who get a copy of his report after the appointment. I would be very surprised if he doesn't ask for a whole raft of bloods to be done so ask to receive those results too.

Best of luck
JudyT