Scleroderma & Raynaud's UK (SRUK)
6,967 members3,303 posts

All new to me! Help!

Hi! I’m just looking for some advice and support really. This is all so new to me! I was referred to a specialist in September 2017 after experiencing some dodgy symptoms along with quite severe Raynaud's which I have had since a young teenager. I’ve also always been prone to infections. My specialist was very thorough and luckily I don’t have any organ involvement or skin involvement right now, just Reflux, Raynauds, tiredness and a few other symptoms but nothing too major. He said certain antibodies in my blood test results suggest Sjögrens Syndrome, and he said he’s 100% sure I have Scleroderma but he can’t medically prove right now because it’s so early and it’s a watch and wait game. To be honest I’m terrified and feel like I’m in limbo, although I do completely understand it’s not that simple to just get a diagnosis straight away. I am worried about how the Scleroderma and the Sjögrens is going to affect me long term and also with concieving. I currently live a busy and normal life. I had three days of Iloprost treatment in November which was horrible but it did help! The Nifedipine tablets didn’t really help the Raynauds and I’m now on Aspirin which hasn’t helped much either. Can anybody offer any advice on how to deal with this as it’s all so new to me and all I keep thinking is ‘it’s going to get me’! Any other medications to try and if anybody has any advice on how I can help myself for example diet, excersise or anything else i’d really appreciate it!

14 Replies
oldestnewest

I sympathise as I am in a similar stuation. I was referred to a consultant last year who was very thorough, confirmed the Raynaud's and reflux, said that that and my blood tests suggested pre scleroderma and that we would keep it monitored. Nothing has really changed and I saw a different consultant a couple of weeks ago who says that the Raynaud's is secondary but they don't know what to. I spent a while last year being very worried about what might happen though in fact the biggest problems were trying to get to the right medication balance. I think keep living your life but as you are but looking after your self is the best you can do.

2 likes
Reply

Thank you for reply! It’s frustrating being in that situation isn’t it. I’m just hoping with the right medication I’ll be able to just get on with things and not have to worry too much. Yes I think just getting on with it is the best I can do too right now. I hope all goes okay with you!

Reply

Hi Dani, I would have a little look at some of the historical posts on this site because there have been several people in a similar situation to you that might be helpful for you to read.

It is ridiculous to say to you 'Don't worry', because you would be a strange person if you didn't. No one wants any form of health problem which compromises their lifestyle, and scleroderma is definitely not one that you would want...or Sjogrens for that matter (although the repercussions are slightly less involved). Don't scare yourself by reading copious amounts of information on the internet. Stick to tried and trusted sites like SRUK, but recognise that everyone has a different 'journey', and yours will be unique to you.

There is not an issue with conceiving usually that is disease related. The problem would generally more be about if you were on any medications for your condition that could have an impact on your unborn child. You generally have to stop certain meds prior to conceiving and during pregnancy, so always keep your health professionals informed of your plans.

Regarding lifestyle changes that are helpful. My biggest advice is work with your body not against it. Don't try and push on regardless through the fatigue and other symptoms. it never works. You will need more rest and recovery than an average human being so make sure you deliberately build it into your days and weeks. Prioritise sleep and get power naps if you can. Keep active, but again never push yourself to your limits. Make sure that you are getting a good diet with a good mix of vitamins, minerals, proteins, good fats and fibre. Go easy on alcohol and caffeine. Live your life! Sometimes people going through stressful life situations have exacerbation of their condition. Of course, we can't remove stress from our lives but make sure you look after yourself and seek support to handle things.

Hope that helps

Lucy xxx

3 likes
Reply

Thank you Lucy that has really helped. I think my problem is although I do get plenty of sleep during the night I probably push myself more than I should do during the day, I’m always busy but I enjoy being that way, however I’m starting to realise I may have to spend a bit more time resting because sometimes the tiredness really does get me down. I have scared myself by reading into it too much so I think staying away from it is probably the best thing. Thank you for your advice and I hope all is good with you Xxx.

1 like
Reply

Dani - try Fluoxetine which is the old Prozac. I came off Nifedepine as it might me so woozy all day and miraculously the Fluoxetine has taken away the numb hands and the frozen plates of meat syndrome on my feet, although they still numb. And I don't findthe Fluoxetine affects my mental or awake state. I believe some other sufferers have tried Viagra with differing results but you have to keep trying and testing until you find the right "recipe" for you - and remember your GP is far too busy to review your case between visits, until they see you again, so keep returning and reporting back until they formulate something you are comfortable with. When they don't see you they presume everything OK - how are they to know? Good luck

Reply

Thank you Pinkdorf! My specialist did suggest Viagra if the Aspirin doesn’t work so it looks like another visit to the GP. Thank you again I really appreciate the advice and support! Sometimes I hard to talk to people about how I’m feeling because I feel like they don’t understand I suppose as much as they try to because I’m still pretty much the same as I always have been. I hope all is okay with you X

Reply

Symptoms come and go in cycles. I m 88 and still going. I am philosophical.

3 likes
Reply

Wow 88!? Hope all is good with you X

Reply

Hi Dani-7

I completely understand your anxiety...I was diagnosed 3 months ago and it scared the hell out of me.... I didn't want to be that person that woke up every morning with Crest.... from taking no medication I am now on 7 different pills every day ! And still waiting on more test results.... At first I found it hard to get to sleep and would wake up early hours worrying and unable to get back to sleep.... I was fearful of what was to come... I still am, but try not to think of how things will progress.... I wish you the best and will only say try and take it one day at a time.... x

Cathie

1 like
Reply

Ah Cathie I understand completely how you feel. From what I’ve read it’s such an unpredictable disease there’s just no knowing how it’s going to effect each person. I still struggle with this but I suppose just taking one day at a time is the best we can do . I’m frustrated too because Life insurance and critical illness cover won’t touch me, have you had the same issue? Thank you so much for your reply, good luck with your test results and take care of yourself! Dani X

Reply

Hi Dani,

Unfortunately I have no life insurance or critical cover insurance, hindsights a wonderful thing !.. I suspect i'm older than you (57) and luckily I have insurance cover on my house , but trying to get it now would be a nightmare.... Everyone on here is fantastic and positive and I am trying to get to that stage but not quite there yet... There is so much to digest , I am taking steps to help with my own diagnosis... ie.. reading up on the immune system, cutting out gluton firstly (though gluton free bread is not the best tasting ) at least if I am doing something I can feel a little bit of control...

Suffice to say I hope in time they will find a cure for auto immune diseases and we will all e well again ..

Cathie x

1 like
Reply

Hi Dani 7

I just wondered how you’re getting on?

I was told 6 days ago it’s looking likely that I have systemic sclerosis, and I’m absolutely terrified! Everything I’ve read ( and a I’ve read a lot ) is absolutely awful. I’m so scared.

Ladybug

Reply

Hi Ladybug! I’m not too bad thank you, plodding on and I feel like the Sjögrens is getting worse the dry mouth etc is getting terrible but apart from that nothing really new. I’m so sorry to hear that, I understand how you feel! I’ve been told I have a probable overlap of Scleroderma that will develop over time and I’m scared myself silly reading about it. Employers have been awful about the whole thing too. I know it’s really hard but try and stay as positive as you can. This forum is full of inspiring and amazing people that are all going through the same/similar circumstances and I’ve found it a godsend. If you ever need anything or any advice I will help as best I can, as I’m sure many people on here will too. It’s easy to scare yourself but everyone’s journey is different. Try and relax and listen to your body, take each day as it comes, get plenty of rest and don’t be scared to say no but at the same time don’t let it stop you from doing what you want to do! I hope that helps a little bit and if you need anything please just drop me a message.

Lots of love and take care of yourself!

Dani Xxx

Reply

Hi Dani

I have suffered condition for quite a time it was organs effected since may not the skin have to treat with steroids.

Been getting headaches lately can't stand light in my eyes. About a week ago new symptom started in back of head and as been moving down body now just past half way. And some parts of legs . It's like numbness pins and needles feel full of cotton wool and (cardboard) if that makes sense. My skin is so itcy and numb. Extra

Grateful for any advice

Hope you are well today 😉

Thankyou

Maria

Reply

You may also like...