Scleroderma & Raynaud's UK (SRUK)
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Newly diagnosed systemic sclerosis

Hi, I am a 54 female and have recently been diagnosed with systemic sclerosis. I had never heard of it before so it came as a big shock. But at least I now have a name for all the things I have wrong with me. I am reading all your post and finding them very useful and so relived that my illness is not all in my head.

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Welcome, Frances

Yes, it is helpful somehow to have a disease with a name, even one that no one has heard of and is difficult to explain to others.

At the moment I'm trying 'Systemic sclerosis is a rare illness that's affecting my ... (here mention only 1 or 2 things) and I'm under X hospital (just say one even if there are several).' This can clarify one's limitations, but indicate one is getting appropriate help. One natural response to this is a revelation of a health issue of the listener's, but that's fine.

What are others' experiences?

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Yes it certainly helps to have a name even if it’s a strange and unusual one. Thank you

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Hello Fr4nces

I'm in the same boat as you - I was diagnosed 12-18 months ago. I'd been visiting my GP with various complaints over several years but as it's so uncommon he had never put two and two together. It was only after endless hospital tests etc. etc. Although you get to know you have an unpleasant disease it's quite a relief to know it has a name and you're not a hypochondriac. My GP actually said he'd never seen it before. It is a comfort to come here and find people are experiencing the same as you and it's helpful to find out about treatments and how everyone copes. I'm sure you'll learn a lot more about it as time goes by. One irritation I have is that people look at me and say, "you do look well," when in fact I'm feeling awful. The Scleroderma element of the disease has me looking tanned and healthy. I understand we have no cure so I think we have confront what we have and, as my consultant told me, "manage it". I hope you get to grips with it all - it's pretty daunting at first. However, as they say, "life goes on". Keep as well as you can and try not to worry too much.

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Thank you Betsie, it’s been 3 days since diagnosed and I’m at work feeling blessed and positive as there are many who cannot work

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Hi there, I too am a 54 year old female newly diagnosed with systemic scleroderma and was knocked sideways as I’d never heard of it before. I’ve only found this page today! The comments I’ve read so far have been great and very informative and finally I don’t feel so alone and lost. My Cardiac results came back clear but I’ve not had my pulmanory tests done yet. I do have to return to Cardiac for more tests as I’ve been getting a lot of chest pain so am just playing the waiting game again. I’ve been trying to find a support group however there is none so if anyone else in Scotland fancy’s meeting up please give me a shout.

Thanks

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Hi Leroy, where in Scotland are you x

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Hi Maryjcl, I’m in Dundee, where are you?

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Aww ok, I’m from Greenock, live in Yorkshire but up home often. Hope u can find someone near xx

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Hi Maryjcl I live in Skelmorlie next door to Greenock.

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Hi, I usually stay with my brother in inverkip so even closer to u, let me know if u want to meet for a chat xx

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Just goes to show the world is a small place Mary xx😄

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It sure is xx

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I live in irvine ayrshire I've had the disease since I was five now 43 many years of suffering as at the time I found out no doctor knew anything of this disease all they knew was it was only myself and one other person in the UK who had it I'm now 43 and feel it's getting worse as I'm losing use of my hands when writing or cooking ect I have a huge patch if the scleroderma on my top right arm and in the join on inner middle arm

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Hi LeroyT . Just to let you know that there is a fairly active support group for people with Scleroderma in Scotland. We try to meet up about twice a year somewhere central so more people can attend.. There are also more local meet -ups for people who live near each other. If you are on Facebook there is a page called the Scleroderma Family, The Scottish members of the support group are also members of this group. If you post there about looking for the Scottish support group, someone will add you to the group. I am near Inverness and when I was first diagnosed in 2015 I asked the same question and got no responses here, yet the Scottish group was already up and running. Hope you can join us! x

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Thank you. Have sent a request to join the fb page. Just feel it would be even more beneficial to speak to someone face to face as I tend to mix words up and forget what’s been said in a phone call. Would really like to join you on your next meet up if I can. I asked about a group in this area but was told there wasn’t one 🙁 Thanks again and hopefully meet you soon x

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Hi Alice,

I've seen your mention of a support group in Scotland and would love to get in touch with you about this. A few of our members here at SRUK have been looking for a support group in this location. Our facebook page is 'SRUK'.

Thanks!

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Hi. We are an informal group of people who meet up when or if we can, depending on people's health. Nothing more formal than that.!!!! Alice

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Hi Alice. I have just been diagnosed with Scleroderma and Renauds and have posted trying to find a support group in Scotland but have'nt heard anything. I am in Aberdeen and would like to join the support group and meet up with people if possible. If you could send me the details I would appreciate it.

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Hi Patricia. Just being newly diagnosed is such a difficult,stressful time. There is so much to try to take in about the condition. We have a fabulous group on Facebook called Scleroderma Support in Scotland and there are a growing group of people from Aberdeen and Aberdeenshire who would be glad to offer local support. The page has pinned posts at the top with great information if you are newly diagnosed. I think most of us are also in the Scleroderma Family UK on Facebook. There is such a wealth of support and information on both sites. We also do try to meet up in our smaller local groups for upport. I am near Inverness and meet up with friends there..... in fact one has pm'd me about is meeting up!! Hope you are on Facebook to access these groups. If not I can let the Aberdeen members know about you and find a way to connect you. Alice x

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Thanks for replying Alice. I don't seem to be using the sites properly as I can't get any replies or get in touch with anyone in the area. I was beginning to think there weren't any. I manage to get the info which has been very useful from SRUK. I'll try the Scleroderma Support Scotland again and try and find out what I am doing wrong.

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Have you had any success in joining the Scleroderma Support in Scotland group.There is an 'add members' box on the right side of the page. I can add you if you are still struggling but would need your FB details. Alice

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My advice to anyone who is newly diagnosed is find a Scleroderma specialist as although well meaning a Rheumatologist is not a specialist in our rare disease. You have to keep pushing for the best care. Try not to get depressed l know this is difficult and very daunting but l tell myself every day is wonderful and there really are more awful diseases knocking around. When l was diagnosed ten years ago l went through a kind of bereavement for the loss of a normal future. I have since adjusted and just deal with each problem as it arises with determination and in a matter of fact way.

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Thank you blues girl I’m trying to be positive and being on this site will help.

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Thanks bluesgirl. I was just diagnosed and find your words very conforting.

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I’m struggling to be positive just now but it is early days. I’m finding being able to speak to other people on here is VERY helpful.

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Hi Fr4nces, welcome to the gang. Finding this group has helped me a great deal and I hope you find the same. I was diagnosed 7 years ago and did not grasp the seriousness of the disease until sometime later when I did some research. It scared the life out of me at first but you come to accept things and appreciate the little things in life a lot more, which is good. My partner calls my illness my "sleeping monster" as it seems to be quite mild to moderate for a time then rears its ugly head every now and again to try and take charge. But up to now I keep beating it back down :) "gan canny" as we Geordies say. x

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Hi nanagill thank you. Sleeping monster is a good way to describe it. It’s great to have somewhere where you can find out information first hand

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Hi nanagill. It's so nice to read your post. I was diagnosed a couple of weeks ago and I'm terrified. Until now, my main issue is Raynauds, but what is crippling is the anxiety, the fear that doesn't allow me to eat or sleep. Reading your post gives me hope, one day I will also come to accept things and, as you do, enjoy life again.

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I'm so glad my post helped you a little Nereyda. That's what this wonderful site is all about. We're all here to seek and gather helpful information and to help others along the often rocky path. We can still enjoy life, just in a different way than we used to. Love to you x 🌹

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Hi yea I got same had it since 2009 I did not know what it was so scary at first r u under a specialty I take loads tablets everyday only 45 I just try n get on with things take it day by day xx

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Hi Fr4nces. I remember the early days of my diagnosis and the overwhelming anxiety that came with it so really feel for you. Glad that you have found this supportive group. Earlier I replied to LeroyT who was asking about a support group in Scotland and I see that you are based in Scotland too. There are some people with Scleroderma near to your area and hopefully you will be able to get some support from them. This is the reply I sent to LeroyT.

"Hi LeroyT . Just to let you know that there is a fairly active support group for people with Scleroderma in Scotland. We try to meet up about twice a year somewhere central so more people can attend.. There are also more local meet -ups for people who live near each other. If you are on Facebook there is a page called the Scleroderma Family, The Scottish members of the support group are also members of this group. If you post there about looking for the Scottish support group, someone will add you to the group. I am near Inverness and when I was first diagnosed in 2015 I asked the same question and got no responses here, yet the Scottish group was already up and running. Hope you can join us! x

"

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May I ask what all your other problems are in addition to systemic sclerosis? I have so many things wrong with me, large and small. I've gotten some very good leads regarding doctors to see in the states (in New Hampshire), but finding my way there is tricky for me. I have cataracts occasionally cause me problems with driving. It was suggested I try Dartmouth University but now that I've reviewed the travel time, the somewhat confusing driving directions, and the fogginess that is always with me, I am rethinking that the option to drive over there from my home state of Maine to the New Hampshire/Vermont border. I'm wondering if there would be an option to write to Dr. Hughes, if he is still practicing?? I have so many small symptoms that are widespread throughout my body, and with new ones cropping up, that I don't know what to do next. I've heard from the Neurologist who still maintains that it it is nothing and once I come off the Warfarin, if I have another stroke, he will know at that point that I need to continue the Warfarin therapy. Seems to be a bizarre irrational means to arrive at a solution. I am trying to find someone to drive me to see one of the doctors mentioned in an earlier post, but if that doesn't pan out, a phone consult seems my only other viable option.

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Hi there,

If you're new to this, I highly recommend the SRUK site and watching some of the keynote speaker videos from their 2017 conference

m.youtube.com/playlist?list...

A lot of the info out on internet can be quite scary and overwhelming so stick with the professionals.

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