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[1436]

Hi I'm a very scared recently diagnosed with scleroderma and raynauds

[Bean82]

Hi 👋 I was diagnosed with both in 2016. I can understand scary. How long have you had the symptoms before diagnosis?

[1436 in reply to Bean82]

Nearly a year

[1436 in reply to 1436]

Don't know what to expect not had much help at all I'm so anxious and depressed

[Bean82 in reply to 1436]

The good news is always to have the diagnosis. When I was first diagnosed the consultant gave me the best advice - only look at the SRUK website.

There’s a support line on the SRUK webpage, it’s truly worth keeping on reaching out.

Do you have friends or family? It feels huge and others help us keep that feeling in check.

[1436 in reply to Bean82]

Hi yes I have friends and family I'm just so frightened of what's happening to me I've had 3 cyclophosphomide infusions

[1436 in reply to 1436]

How are you doing now since your diagnosis

[Bean82 in reply to 1436]

I doing ok. I take immunosuppressants, experimented with different tablets for Raynauds. I’ve also had a week in hospital for Raynaud’s treatment. I still work full time. Good days and bad days. And endlessly searching for the good day, when I don’t attempt too much 🙄 Off for an echocardiogram tomorrow.

Life’s different can’t lie, trying hard for it not to feel like it though

[1436 in reply to Bean82]

I'm just such a mess at the movement so frightened think the worst all the time just want my independance or some of it back and be able to be p ossitive I'm on so much meds don't know we're I'm coming from can hardly walk with muscle pain and shake don't know if it's muscle or my meds head is in bits

[Bean82 in reply to 1436]

Remember to breath. Sounds like you’re still in a bit of shock? It’s life changing, takes a while to wrap your head around. I was on more meds at the start than I am now. My mood fluctuates too.

The diagnosis is key. You’ve got that. Keep a track of symptoms and reactions for when you meet your consultant.

Be ok that it doesn’t feel ok now. It will soon because you can take control.

[1436 in reply to Bean82]

Thank you x

[Bean82 in reply to 1436]

I’ve not had that and it sounds scary. Don’t worry about how you feel, it’s going to come and go in waves.

[creditcrunchie]

Hi. I was diagnosed 2009. My husband died in the January and by February I had ulcers, top to toe rashes and the oddest of all.....yucky worms. My immune system had crashed!! But slowly and surely life began to resume normality with the aid of my rhumatologist and this wonderful site which gives you both support and invaluable sources of information. It's both early and scary days for you but someone somewhere on this site has always been there and got the T Shirt. I think most of us find that apart from family there is no understanding of scleroderma with secondary Raynauds....... But on this site everyone gets it when on the hottest day of the year you've shopped in Sainsbury's in a winter coat 'cause the air conditioning is a killer!! We are a definite"me too" site because when you're reading other people's posts you think yes that's "me too". Take care.

[positivedaybyday]

I know exactly how you are feeling! I started feeling strange after 2 bouts of flu at Xmas 2016. ( My trigger! ) Before this I was a very active person!

I remember waking up & thinking "something is seriously wrong, I feel like my body is at war". Little did I realise I was spot on with my thought pattern.

After a few months weird things started to happen to my body. I went to bite on an apple & my mouth didn't open wide enough. Strange aches in different areas of my legs making walking difficult. Problems turning over in bed & unable to get out of bed. Hands suddenky red hot with intense pins & needles, then my feet the same & the list went on. I thought I was going mad!!

I had blood test done in Feb 17 which only showed I had inflammation throughout my whole body. By June I had deteriorated quickly losing a stone in weight & could hardly walk & very breathless.

Another set of blood tests June '17' showed I was ANA positive for Sclermoderma.

I was lucky to be referred to a specialist in this condition at a hospital 20 minutes away where it was confirmed I had the worst of the worst Acute Cutaneous Systemic Scletosis"

It was such a shock and took me quite a few months to come to terms with the diagnosis. I remember thinking I'm going to fight this tooth & nail!

My case was extremely progressive & by November I was in a very bad way.

However after intense treatment, weekly visits to hospitals I am now starting to pick my life back up.

Having the diagnosis is the 1st step & a good Rheumatologist who specialises in this rare disease is a must.

It is very scary as there are a lot of unknowns. This site is excellent to let out your feelings if you want support or are having a good day.

Try to be positive as this is a huge allie but cry when you want to.

There are lots of help along the way eg Physiotherapy. Hydrotherapy, Counselling sessions are very valuable & teach you to pace yourself to this new life.

Ask your Rheumatologist if there are any planned Conferences on the disease at your hospital, these are very informative & helpful. If possible take a friend or family member with you.

Remember it's OK to be scared as you now enter a different phase of your life. Be guided by your Rheumatologist in the treatment plan for your severity of the illness as no one case is the same

Research is ongoing so hopefully one day people like us will be diagnosed as early as possible to help control & manage the illness better.

We are all here for you at any time!! Xxxx

[beaglab]

Hi 1436, Raynaud's is scary, however, it will get easier over time. Once you get a regular routine, things will get better. Thank you for reaching out here. I recommend rest, an organic healthy diet, a comfortable environment, and overall balancing your life. Go easy on the medicines and try use some natural things like Niacin (the kind that gives you a warm flush) 500 mgs. twice daily and put Frankincense oil on your hands; it is so helpful.

[svanseghe57]

Wait before becoming too worried.I also , like everybody felt bad, but as time goes on you can understand the extent of the disease

[beaglab]

It is hard to cope with Raynaud's, however, the pain and ulcers are a lot less frequent since I started applying the Frankincense oil to my hands. My hands are relaxed and much warmer. Keep on talking to us here, it will help you feel encouraged.