Scleroderma : Since recently being... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Scleroderma

Ncoff profile image

Since recently being diagnosed with scleroderma (which type I'm not sure) I feel so down and anxious and severely tired. Is anyone else feeling this way the tiredness is the hardest sometimes it feels so painful just being tired.

18 Replies

I was told that nothing can be done bout the tiredness. But I have found with much experience that if my symptoms are alleviated to some extent by treatment it helps with the tiredness. Also things happen to me in cycles, come and go. above all I must not let it depress me as this is tiring in itself. I purposefully seek laughter, its good for me and those that deal with me.

Ncoff profile image
Ncoff in reply to zenabb

Thank you zenaab I agree feeling down does make it worse I've been told the same about the tiredness I guess I just hav to embrace life to the best of my ability and change s few things j guess

mad4cavs profile image
mad4cavs in reply to Ncoff

I to have recently been diagnosed and agree with you the tiredness is so hard to come to terms with I've learnt to pace myself I know if I do to much I will regret it.I have diffuse scleroderma,it affects my digestive system if I eat to much I get terrible abdominal pain so I've learnt small snack size meals are the best,I've I'm finding I have to listen to my body.and try to adapt to the new me

The tiredness for me is more painful than the physical pain if that makes sense. I could cry because I'm constantly exhausted. Not sure if anyone has any ideas but I know exactly how you feel x

Ncoff profile image
Ncoff in reply to hhardwick

Yes i agree sumtimes I'm so tired it does seem more painful. I'm positive that hopefull doing fun gentle yoga will help relax me and help with my inner wellbeing. I'm so down sumtimes if makes me angry then I cry, I hav s two ur old daughter and sumtimes I'm just tired to enjoy her I find myself shouting and all she wants to do is play, u go bak to work nxt ek after almost 6 months off I'm so anxious I don't no how I'm going to do it 😢

Aubmtz profile image
Aubmtz in reply to Ncoff

Stay strong. You can do this. Be patient with yourself and others around you. Remember we just need to keep going

Dc012885 profile image
Dc012885 in reply to Ncoff

Omg can I relate!!! I was diagnosed almost 2 years ago n in the beginning it was really tight skin and painful hands with a little fatigue well it started to get better after a year now my skin is normal but now I’m severely weak some days with no energy n a hard time getting up n even holding my head up to talk to my kids!!! I’ll have 3 good days then bam I wake up n I physically can’t move!! Well my bad days maybe lasted 2 days before now it getting to 5 days!!! I take care of my mother in law n get paid for it but lately I can’t even do that I’m so weak n exhausted!!! I don’t kno how much longer I’ll be able to help her because my disease is so unpredictable!!! I also have a 3 yr old n a13 ur old n it hurts so bad that I can’t do the stuff I want to with them most of the time so I beat myself up because I want to be the mother I used to be!!! Thank god I have help from there dad because when my bad day comes I’m so exhausted that it’s very hard to take care of my 3 year old n give her all the attention she needs!!! Trust me I know the feeling of just yelling all day when really my daughter is just being a kid!! I’m new on hear but would love to exchange info to keep in touch !!! Sometimes I just feel so alone n nobody understands so I could use someone I can relate to!! Well If I had the answer to fight this fatigue I’d let u kno because it definitely takes a over a big part of our lives!!! But I’m here if ur down and need support!!! Stay strong and just look ahead ur kid needs u to need u to be strong!!! Xoxo

pallinurse profile image
pallinurse in reply to hhardwick

Walking helps me a lot. I ran into some issues with tight fascia after a knee surgery and found a great physical therapist who broke up a lot of the restricted fascia so am finally walking again. I have to do exercises every day to stay strong enough to keep moving. If you have any problems getting exercise in I recommend physical therapy if possible to treat issues to allow you to move about. Has made a big difference for me in energy level.

How did u find out u have scleroderma? And did u have headaches and blood shot eyes? I have Raynauds but I also have mottled Lacey skin on my legs and basically I'm a shit show :/

Ncoff profile image
Ncoff in reply to Jkkelly

I hav mottled skin on my arms, headaches are definitely a major factor aswell but for me it was a tiredness like no other I couldn't understand it I cud fall asleep standing up. I started having pain in my joints aswell that Drs thought was vitamin d deficiency but after supplements I'm still no better

I had a very aggressive onset over 20 years ago with all the worst symptoms, 2 young children and a husband working abroad. The full Monty.. For months I could not even hold my head upright, just slept all day picking up children from school in my PJ. I was convinced I was dying. Today I swim an hour every day and do gardening all day with little rest. If I pace myself and do not climb or lift, I have a perfectly normal life.

After 5 yrs of immunosupression the pace of deterioration came to a halt and the recovery began. My DLCO remains at 63% since 2001.

I live in Spain so the climate change was definitely beneficial.

Please do not dispair, it really does get better. It just takes a while to re-program your immune system to stop sending wrong signals to the brain.

Best Wishes 💝🌺💫

Ncoff profile image
Ncoff in reply to Sootie1

Thank u so much my partner works away and h do think that doesn't help but I hav a gud family and circle of friends always there for me. I used to b such s happy energetic person I hope I start to feel better soon xx

I recall feeling depressed and angry when I was first diagnosed. It took months to get used to the idea that there was something wrong with me. Then, my practical side kicked in and I started to understand all the things that were going wrong with my body systems had a name. Acceptance made things better. I read lots about the condition. I had a superb heart specialist, a great dermatologist, and a fantastic rheumatologist! Heart and lung medication made a huge difference to my daily living. Unfortunately, I was allergic to all the anti inflammatory medicines, so I often swapped one problem for another.

We have moved to seven times and three continents since then, and I have learned that the quality of medical care varies from place to place, so for the greatest part, I have learned to self manage my condition with the help of a GP. You know your body best. Listen to what it tells you.

Live every day to the fullest you can manage. Good luck!

Hi there, you are bound to feel anxious, it's scary stuff, but I have to say remember everyone's symptoms are different so try not to take all you read to heart. I did at first and was so down and upset. I've learned the best way to cope with the exhaustion is to listen to what your body is telling you. It's so hard when you've always been so active but it's a good thing to learn. For instance if I have an evening planned I tend to have a easy day. Everyday is different so try not plan to far ahead and take each day as it comes , only took me 3 years lol. Also hopefully when your medication is doing its job things will settle down for you. Most of all keep 😀.

I was diagnosed with Morphoea a couple of weeks ago and I feelnthe same. It's a lot to take in. When is your next appointment? I'm focusing on keeping a record of how I'm feeling, my symptoms and any visible changes. Along with this I'm making a list of questions to ask at my next appointment. This seems to help me get my head round things. Talk about it to family and friends but as Zenabb says, surround yourself with laughter as much as you can. It really does help and laughter helps the pain. Good luck!

Hi I know that horrible tiredness and the fact that the brain is willing but the body not. As someone said earlier I am sure it comes in cycles and the most important things is trying not to get anxious and believe me I am the worst for panic attacks. I have a really good rheumy who looks after me, please try and stay positive there are some good treatments out there.

This site is a godsend. Hope things improve for you.

Thank u everyone this site has helped knowing I'm not making it up in my head and that others are feeling the same and gave come out the other side x

I feel the same as you. It's rubbish

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