Hi everyone. I have systemic sclerosis and raynauds. I kno it’s been cold this week and my fingers are really bad but I have felt so tired this week. Usually I like to go out somewhere most days but this past week I haven’t had the energy to go out and spend half the day in bed. My husband gets very cross with me and says I should see the doctor but what can they do.
Does anyone else feel like this.i have had the disease for 18 years and never felt so bad before
Nothing worse than someone making you feel as though you should be up and doing every day. Even worse of course is when you put that pressure on yourself. I have realised that I am depressed- I wake not wanting to do anything and have to push myself to achieve little things in the house. With this disease symptoms seem to come and go I find. And when I get my chest infections (3 So far in 10 months) it takes me weeks of rest to get anywhere near back to normal. We need to just go with the flo of the disease. 1 day at a time it seems. Take care of you no more feeling guilty. It's the stress that doesn't help us. xx
Thanks for your reply it’s good to know that other people experience it too. I had a shower and washed my hair this morning and had to sit down. Still we cope xx
So true The depression god it gets you badly. It is part of the illness I know. I feel exactly the same I have to push myself to get out of bed. I go a small walk every day which helps even in the cold. I lost my faithful dog at Christmas I had to go out walking him. Poor thing died of old age. I miss him so much and cry most days while walking. So the depression has got worse at the moment. I am the same 3 chest infections over about 10 months. Two was really bad. So Pennypetra do not feel bad at saying no I cannot do it today. I know it hurts to refuse to do things because you really want to go out and do the joint day out with your friends and partners. They do not understand how much you wish you could do it. Take care all of us with this illnesses.
I think the cold and exhaustion are really hard. I guess circulation is affected by the vascular changes, but l can't get warm out of my bed! Anyone else have problems eating when it's cold too...like my system just doesn't cope at all.
Hi there, so sorry to hear that you are having a bad week. It happens to us all. It is the normal rollercoaster ride that is living with scleroderma. I partially agree with your husband, in that if this is different for you, and you are really dragging yourself around then I would speak to either your Rheumatology team or your GP. There may be any number of reasons why you are under par at the moment, but if you are having a flare of your disease then it might be that your medications/treatments need reviewing. Sometimes periods of exhaustion come and go and resolve on their own, but it is always better to be safe than sorry and get it checked out.
With regard to managing while you feel like this you need to make sure that you are building in short rest periods throughout your day, and having an afternoon nap, and going to bed earlier than normal. Your body is telling you it needs rest. Although it is not a good plan to stay in bed all day, unless it really is a one off as a result of a virus/flu. Prolonged resting can really lead to deconditioning and that is not good, but you absolutely need to build in recovery time as you go through the day. Do a bit, rest a bit, do a bit and so on. Stop before you are exhausted, and then go back to things.
Most importantly be kind to yourself...especially if those around you are not being so understanding! Living with scleroderma is really tough. You are doing the best you can. Look after yourself and see if you can encourage that critical voice in your head that we all have, to be a bit kinder. Think of what you would say to your best friend/child. You wouldn't be harsh on them. Kind, encouraging words and gestures is what you need.
Take care
Lucy xxx
Thanks for your lovely reply you have made me feel so much better. I will be seeing prof Denton of the Royal free in March so will mention it to him. Am having a lung function test in 2 weeks and depending on the result of that I could have a scan.
It is so kind of you and everyone to reply
Pennypetra x
Oh, good, I am pleased to know that you are involved with the Royal Free and that you have some investigations pending. I love a lung function test...NOT! Sitting in that cubicle puffing away when they shut off the oxygen...or maybe yours is different? 
Lets hope you will soon be feeling more like your normal self.
Lxx
Hi Lucy.
Thanks again for reply. My test is different to yours. I just have to hold breath and blow out. Breathe in mix of air hol and blow. It’s diffi cult though because I keep coughing xx
I completely feel the same and I went back to work in November. Really regretting it this week. I actually cried getting dressed today I felt that tired and achy. I feel like you no point in going to the doctor. I’m under the royal free too. I have my heart scan this weeks and lung function in 2 weeks Let’s hope the weather warms up soon
Sam x
Thanks for reply. At least I am retired. Hope you feel better soon x
I have had Raynaud's and systemic sclerosis for 39 years. Some days I feel really tired and blah. So I just stay home. It's too cold here in Ohio. It's been a long winter so far
Thanks for your reply. Yes I am sure weather doesn’t help. Hope it warms up soon for you. Xx
Hello, 39 years is a long time but shows there is always hope. Have you had any hardening
No very lucky in that aspect. Started with Raynauds in my early 20's then trouble swallowing so I have had my esophagus dilated about 10-15 times through my scleroderma life. Severe reflux for 30 years controlled now by Nexium generic drugs. Terrible chronic constipation; about 15 years ago I had a twisted bowel and then had a bowel resection. Take Miralax (adds water to the bowels) everyday so I won't be constipated. Severe lung problem, called interstitial lung disease due to all the fibrosis in my lungs. Had pneumococcal pneumonia about 10 times. Have had sepsis 3 times and intubated 3 times. I now have an airway clearance vest that I wear twice a day for 20 minutes to help get the mucous out of the lungs, (clearance vest is also used for people with cystic fibrosis). I take nifedipine and tadalifil for Raynauds. Also symbicort and eucrisa ellipta for help with breathing, and oxygen at night. Went on disability seven months ago and feeling fine. Short on breath but otherwise ok. Missing one finger due to Raynauds . It went from Crest to systemic. Doing good and enjoying life.
Hi, I get very tired but more so over the last few week so I’m wondering if it is the cold weather. Hope u feel up to going out soon xx
Thanks. Yes I hadn’t thought of that.it could well be. Xx
Hello, I know how you are feeling. I have Raynaud's and Scleroderma. Sorry, your husband is finding it hard to understand. I find you cant keep phoning the doctor because this is our illness. Some doctors like people have not got a clue what this feels like for us. Every day is different in the amount of pain and where today aches. And the pain can be so bad 10 out of 10 as they say. I have been given a new drug by my consultant nitroglycerine patches for my Raynards. I have been on it for nearly a year now. They are doing this at the Royal London Free. It is very painful to use the first week with very bad headaches but if you can get through that like me. It is amazing. I could only stand it 12 hours the first day and built up the hours over the week until I could keep it on for 24 hours. I have the patch on 24 hours a day now. It is really helping me. I get the cold fingers and feet etc., but not the pain so much with it. Also, I bought one of the nylon slide sheets to help me get out of bed. They are not very dear on eBay and Amazon. It has been great also for keeping me warm too, during the night in bed I have found. Strange but it does.
Thanks for your reply. Kingfisherblue.I have tried the nitroglycerin patches but gave up because of the extreme headaches. At the moment I am on fluoxetine but don’t know it is helping. Roll on summer! Xx
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