Scleroderma & Raynaud's UK (SRUK)
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Extreme fatigue and cognitive issues

Hi, new on here n a little nervous about posting. Just looking to see if others feel the same and how you cope. Got blood results back from my GP who said I have anti nuclear antibodies but I am very confused. She said it links to systemic sclerosis and referred me to a rheumatologist (awaiting appointment). She's never had a patient with this before and doesn't know a lot about it. I am now worried sick not knowing if I definitely have this or not. I do however have a lot of symptoms but really struggling with extreme fatigue, have so much to do and get angry at myself as I have no energy and severe back and shoulder pain. It's got me to the point I'm in tears writing this as I feel I'm not coping and have a family to look after. I keep forgetting simple things and feel like I get a sort of brain fog which actually scares me. Some days aren't so bad but other's I struggle to even get out of bed. Just so scared and confused by it all.

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Hi angG1

welcome to this site, it really is a place where we can come and share our thoughts, news, worries and any achievements. I have had scleroderma, systemic sclerosis and secondary raynauds for 5 and a half years. I am well looked after by a great team on the rhuematology unit at my local hospital and a specialist team at Chapel Allerton. So please make good use of this site we are a friendly bunch and I will sign off with my usual, Smile and wave folks, smile and wave.

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Hi AngG1,

Just over 3 years I was diagnosed with systemic sclerosis, Myositis, dysphagia and a few other problems, it took ages to get diagnosed but I have a good team looking after me. I too feel tired and get lots of pain a bit of brain fog. I too had trouble getting out of bed in the mornings and I was unable to dry myself after a shower, I used to try and lay on a towel on top of my bed and cover myself with another towel and wait for the moisture to get absorbed, cos I was unable dry myself. My health is now controlled with drugs which have helped immensely. This site has been great cos it is good to know that other people are out there are experiencing the same problems.

Everyone is so helpful here.

Good luck.

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Hi, the positive ANAs mean you do have scleroderma. Try not to worry, you’re now on the way to getting help. There are medications and understanding what’s wrong will help you manage things. I know it doesn’t seem that way but with the help and understanding things are going to get better x

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Hi the bear

My rheumatologist says that blood tests are not good to diagnose scleroderma. I am worried about this as everybody talks about blood tests being either positive or negative. He said I had Raynauds but did not run any tests either. I don't trust this consultant as all he did was touch my hands and my foot for a minute and would not even let me talk. He even said he disagrees with many of the things on scleroderma websites.

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There are different types of ANAs associated with different autoimmune conditions but if you’re positive that’s conclusive but a negative does not rule it out. If you’re not happy with your doctor you’re entitled to ask for a second opinion (in the uk)

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Thank you very much for your response the bear. I am trying to see my GP for a referral to the Royal Free in London but they can't give me an appointment with my gp till January!!!! I am getting desperate. Everything seems so difficult to be diagnosed properly...

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January is not so far away :) take that!

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Find a new dr

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I will!! Thank you.

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Hello there, I would encourage you to look at some of the previous posts on this site from people who are in a similar situation to you...i.e. at the diagnosis stage and wondering what on earth has hit them and what the future holds. Scleroderma is a rare condition, what I often refer to as a 'minority sport' so it is unlikely that the people around you will have heard of it and most GP practices have no, or one or two patients at most. You will find that things change when you go and see a Consultant. Ideally you need to see one who specialises in Scleroderma, but most Rheumatologists should have a good understanding and know how to treat it. Scleroderma is an autoimmune condition where your immune system is over active, and unfortunately rather than attacking foreign bacteria and viruses, it has started targeting your own cells. In the case of scleroderma this is the connective tissues of the body. Whenever the immune system is active there will be an inflammatory process going on and this is usually one of the culprits for extreme fatigue. Think how you feel when you have the flu and I bet it is similar. When you see the Consultant they will be looking to manage your condition with a variety of medications and this should improve the situation. Most people find that they always experience fatigue but the better your condition is controlled the more bearable this is. They will also be dealing with the pain in your joints. Foggy headedness is par for the course. It accompanies the fatigue, and possibly you may not be sleeping as well as usual. Often you feel tired but the sleep you get is not so refreshing.

The natural human instinct is that when we feel ok we get out our extensive list of things to do and go for it...then we completely exhaust ourselves or increase our pain...so we rest...and then as soon as we feel ok again we repeat this pattern. This can add to your pain and fatigue and also lead to your body becoming deconditioned. We are creatures of habit and we like to do things the way we always have so changing our behaviour can be challenging but the art of managing pain and fatigue is to pace activities. This means stopping BEFORE you need to...changing the type of activity you are doing regularly (vary between sitting, standing and moving and between heavy and light activities) Plan in recovery time to make sure that you are allowing your body to rest in between tasks. This can just be a 5min coffee or sit on the couch...just a pause before you blow all your reserves. If you are really struggling to get through the day it is best (if possible) to have a proper break after lunch (siesta time!) Ideally have a power nap or sleep, but put a timer on yourself so you don't sleep all afternoon. This might help you get through to the night time and a normal bedtime.

Try not to sit around churning things around and around in your head as it is not only what we physically do that takes our energy...thinking requires a lot of energy to and if we are stressing and upsetting ourselves then it is very exhausting and may also disrupt your sleep.

Wait to see your Consultant before doing any internet searching. Be very selective about what you read. Keep posting on here and asking questions.

Big hugs

Lucy xxx

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What a wonderful reply! This advice was so helpful for both my husband (with CREST) and myself (with CLL).

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Wow Lucy what a fantastic reply to AngG1 you didn’t miss anything out and gave some great advice 👍 xx

Hi AngG1

I am just a bit further along the process to being diagnosed than you. I had blood test results back with anti nuclear antibodies back in August, I already suffer from Raynauds which I have had for 5 years but I didn’t go to the gp I just managed it myself. I’ve seen the rheumatologist who suspects Crest (also know as scleroderma and systemic sclerosis I think 🤔) and Sjogrens. I’ve had all the tests done and I’m due back to see my rheumatologist on the 29th November when he said he will formally diagnose and treat. I feel like you exhausted with fatigue, brain fog, body joints etc hurt and ache terribly plus I’ve been off work since September so I need to know I can get help with this and don’t have to live a life feeling this bad. That is why Lucy’s reply was great, you and I will get there we won’t always feel this poorly, it is like having constant flu symptoms. The one thing I have realised is to pace as Lucy said, it’s difficult with a family I know but just try to make small changes. I recognised that stress makes me much worse so I try to avoid at all costs. I’ve moved in a little from being scared, frustrated, angry and the worst people asking ‘what’s wrong with you?’ that reminds me I bought a book off Amazon called ‘What the hell is wrong with me’ my autoimmune adventure, a man (I can’t remember his name and I’m in bed thebook is downstairs 😬) wrote it about his experience and it’s good to read, it helped me understand a lot and how to cope with it. Don’t worry AngG1 there is a light at the end of the tunnel and we’ll get there and feel better.

Big hug

Jo xxx

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Good luck on the 29th Jo! Make a clear list of all the issues that you want to mention to the Consultant and give it to them, or go down it with them. I always forget what I want to say in my appointments...so I need to write it down. There is always so much information at a first appointment so I would take someone helpful with you. All my best Lucy x

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LucyJean’s advice is very useful, I always go prepared with my notebook with my questions, amazing how you can suddenly go off course. My GP always say ‘what have you got on your list today’. With a new illness write down things well in advance cos there seems to be many other factors with autoimmune diseases that get forgotten when you go to see the specialists.

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Thank you both of you for your advice. I am ready with my list and notebook plus my dad always comes with me as I still forget to ask things or write them down. My dad is my star at the moment he is so understanding even though none of us as a family have heard of any of these illness before I became poorly. I have often been called the sickly one of the family and have often heard ‘oh no is our Jo poorly again’ I think my sister who was the main culprit feels guilty now lol and so she should ha ha.

Joking aside I don’t always feel this upbeat which is why I replied to AngG1, it’s so hard waiting for a diagnosis and treatment and a scary time.

Jo xx

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Would like to thank everyone that replied. I really appreciate it. I put it all down to 3 days at college, 2 x 13 shifts at work, spending my 2 days off taking my mum out and spending time with my family. I'm used to being on the go non stop n thought i was just maybe overdoing things. I'd felt a little like that before and needed iron tablets which usually sorted me out. This has knocked me for six but I'm gradually trying to find that whole family, work, college, life balance aswell as accepting that I need to slow down n listen to my body screaming at me to do so. One thing I never do is give up, I had 2 days off and let everything get to me, I burnt myself out, was sore then posted on here. Got angry at myself, had a talk to myself then read all your replies after my 13 hour shift today. I really do appreciate every single one and the great advice. It's really helped. Thank you all for making me smile. Xx

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Hi Ang,

Do you know which antibody you carry with your positive ANA results? That tends to define in a great deal the sort of scleroderma you have (if you do) and the possible complications and treatment plan.

From all you're describing, it's clear you're a "warrior" but I'd suggest you start treating yourself as "princess" once in a while...think about how you can be gentle on yourself... what can you prioritise or simplify at least? (what tasks/activities can you (I.e. Can you combine the outings with your mom with family time so you get it out in one go?) outsource? (I.e. - cleaning, washing, cooking, etc)

I've found that when you're stuck with such a diagnosis, to keep yourself sane, you just need to take it one small step at a time(and reward yourself for persevering - a back massage?)

Good luck!

Tanya

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Thanks Tanya. No I'm not sure which antibody it is as yet but I'll be sure to find out. X

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I have same issues and same back Pain and bad days. All I can say is find what can take the edge off for you to get through. There are good days and bad enjoy the good the best you can and be kind to yourself. 🌷

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I have life-long chronic auto immune problems (not scleroderma) and had / have very similar symptoms to those described on this post eg exhaustion, flu like symptoms, joint pains, brain fog etc. I appreciate that everyone is different and I don't have scleroderma but one of the things I have found helpful is following the Auto Immune Protocol diet and the best source of information (for me) has been a website set up by Sarah Ballentyne, called PaleoMom, look for the AIP section - there is lots of info there. I guess it may not right for everyone but I have found following the diet amazing. I came to this site to buy socks and gloves for my very cold hands and feet and saw your post! Take care and best wishes.

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