Crying 😢

[Campari-king]

Hi there ,

I just came out of hospital and had many tests and 3 biopsy’s . I have Diffuse systemic sclerosis , mainly in my hands and legs. However , it’s now in my arms and body and my face is beginning to change shape and becoming tighter every day .

I started with Raynaud in January and then it progressed in May . I feel very lucky to have a diagnosis so early , as I know it can take a considerable amount of time .

I have been told that it can’t be reversed but can be controlled with medication . I’m currently on a short course of steroids until I see the consultant again . I am a 53 year old male , and I keep bursting into tears , not for long , it’s like a grief cry ? I’m trying to be positive and accept my condition but it’s so difficult at times . It’s such a rare condition that nobody understands the pain and tight skin . I can’t stand up straight because the skin behind my knees and legs is so tight, I feel like it’s going to split open .

I just wondered if anyone had any suggestions for how to mentally cope with this life changing situation ? Thank you

[Mylreaclairelee]

I feel for you and your pain, altho my scleroderma is limited. I hope somebody can gives you some tips but mostly some hope for the future. Its a bugger of a disease. And because you look fine everyone will expect you to be. Take care, theres lots of support in these groups. Try the Scleroderma Family UK facebook group as there are other males on there.

Also we have a local group i started here in Shropshire maybe there's one near you. Also one in Birmingham i know of.

[Elle-St-Joan]

Sending a virtual hug 🤗. You are grieving and it is perfectly acceptable. You have a lot to take in and it can be overwhelming but you are not alone.

I found creating a cupboard with lots of drawers in my mind helpful, Each drawer has a little bit of my condition in, either a fact or feeling. When I was first diagnosed I felt I was drowning in information and I had to break it down. I open the drawers that affect me on a daily basis and manage those, such as pain, physical restrictions And also the positive things. Then I open the others when I feel I need to, such as what will happen in my future. I find that I get more emotional when I’m having my annual test done so I don’t look in that drawer then. I understand this might not work for you but there are many different ways of accepting and dealing with this condition, you just have to find what’s best for you.

Hope this helps a little

E x

[Poppy221]

Try asking your GP if you can be referred for Cognitive Behavioural Therapy, especially to a therapist who specialises in long term diseases - they do diabetes and the like. Helps to talk, to learn what are common mental effects of having something long term and strategies for coping.

You can also refer yourself privately if you want.

[LucyJean]

Hi there, I think you are just being normal...your reaction is completely to be expected. It is normal to feel shell shocked and grief stricken! You are allowed to feel fear and sorrow. B*ggar positivity! I am going to quote Sophie Sabbage (who was diagnosed with an incurable form of cancer) and said 'If you can't sit in darkness in your darkest hour then when? Under what circumstance is it ok not to be ok?'

Crying is entirely congruent with the situation. Ignore the seeming societal pressure to have a stiff upper lip and to stay positive (much worse when you are a bloke I am sure). You weep, wail and unburden yourself from the emotional dis-ease that accompanies this physical disease. Positivity in this situation is stressful and unsustainable. It also hinders your ability to actually deal with what is going on for you. You need to feel to heal. You need to work through this stage of the grief process so that you are actually able to make some rational decisions so you can take charge of your own health. If you suppress your feelings, then it can lead to depression, but by facing and admitting and expressing those emotions you will be able to get through this. What is that saying, the way out of any difficult situation is 'through'.

We are not talking about wallowing, or resignation or giving up. We are just talking about expressing what you feel. We are not talking about constantly asking 'Why me?'...but starting to ask 'What now?' What helpful steps can you take given this difficult situation? What actions can you take everyday that will improve your physical and mental health?

For example, Learning about the condition, increasing your awareness of what your specific symptoms are and how to manage them best, getting a good skin care product and making massage and moisturising your skin part of your daily routine, ensuring you have a reasonable diet, that you stay active using some gentle form of movement and stretching and that you prioritise have down time to relax and recuperate when your body so desperately needs it...making time for fun, enjoyment and relaxation. Learning some stress management strategies such as breathing exercises.

But, first and foremost give yourself time! Don't treat this as something you need to sort asap. I hate the cliche, but this is a marathon, not a sprint. This is going to take time. So give yourself time. Don't rush yourself to have dealt with it, ready to move on. Having scleroderma is not like that. I have been diagnosed since 2004. I have been in many different places, physically and mentally, over the last 16 years. Some of them were extremely dark, like a difficult neighbourhood that you wouldn't want to venture into alone!!

Acceptance is not something you ever achieve, you are just sometimes more accepting than others. But, in this context accepting that you have this is important, because then you can make a practical plan to keep dealing with it, rather than pretending that you don't have it and trying to push on regardless.

So, saddle up my friend. Get yourself a good support team around you compromising of some reliable health professionals and friends and family who can let you be you, and will not shut you up when you cry, but allow you to go through it...and prepare for the journey you are about to go on.

Bear in mind that the most important person you need on that support team is yourself. Most of the time we treat ourselves like our worst enemy, we give ourselves a hard time when we can't do something we used to be able to do, we criticise ourselves when we are failing according to our internal standards....try not to do that to yourself. You are already going through a hard time. Get yourself off your back and into a position by your side. Treat yourself like your best friend and this journey will be a lot easier.

Come on this site and ask what you need to. Lots of people will listen and be here for you. On here you can talk to people who know what it is like to go through this.

All my very

Lucy xxx

[trunchalobesity]

I cried for weeks with my husband in the small hours of the morning when our children were toddlers, there seemed to be no hope.

But while the disease is incurable at the moment, research continues and in the 20 years I’ve had the illness treatments have really improved.

I’m taking medicine that simply wasn’t around 20 or even 10 years ago.

I ensure I do as my drs ask. I keep fit, watch my diet, take my meds without fail.

I’ve learnt about the disease, how it affects me, what helps and I am an expert in my own care and symptoms.

My children are at University now.

I’m happy and as well I think as most of my peers without the disease. I live a full life, although I wouldn’t rush to do anything that would make me cold! Other than that, I’m running, cycling, walking and gardening.

Find what gives you joy and Pursue it.

Grieving is normal and something most people go through.

There are support groups, I attend one in Birmingham (pre Covid), a lovely gentleman coordinations it. There’s also one here with someone from SRUK. They have zoom calls together on Sundays which you may find useful.

In the meantime I wish you well.

There will always be understanding and support here.

I have diffuse systemic Scleroderma but it’s not who I am x

[positivedaybyday]

Hi,

I completely understand how you feel. I too was diagnosed with acute cutaneous systemic sclerosis 3 years ago & mine like yours happened suddenly.

Cry as much as you like as it is a necessary release. The main thing is not to be hard on yourself as you are climbing a very high mountain. I used to curse at myself all the time & call myself stupid when I could no longer do normal things.

I had 2 referrals to talk through my feelings. One through my Dr & the other through my consultant at the hodpital with a phychologist. These sessions helped me deal with my dramatic life change. If you are struggling ask now for help as the sessions can be 4/6 months ahead.

Keep positive as much as you can, I kept saying 'I will beat this awful disease, I will not let it destroy who I am"

The good thing as you say is that it's been caught early. Your Rheumatologist consultant will steer you through the different options available & medication available. Don't be afraid to ask your consultant any question, however hard the answer might be as that will aid you make the important choices.

My case was very aggressive, My skin tightened to a score of 48, ( the highest score is 51!) I was placed on Microphenolate 3/4 months after my diagnosis but unfortunately it didn't work for me. Normally it controls the disease.

My situation was very desperate & because of this & also that the disease was in its early stages I was lucky to be offered stem cell treatment.

I had to undergo strict tests to make sure my organs had not been affected & that I was strong enough to go through the extensive treatment. Luckily I passed the tests & 2 months later started the process.

I had the treatment fully explained to me with the fact that I had a 10% chance of dying. I remained positive & turned it around to say, "OK but I have 90% chance of living!"

Yes it was an arduous time but now 2 years on I am so much better. I've gone from having difficulty walking, on over 26 tablets per day including morphine, down to 3 tablets daily. It truly is a miracle!

The stem cell team said that my positivity was one of my big pluses!

Find out if your hospital is having any talks/conferences on Systemic Sclerosis. When these happen, take a friend or family so they can fully understand the implications of this disease. I found it very helpful because people don't understand how it effects you day to day in so many ways.

I know Covid is playing havoc but there are some online conferences going on.

I hope I have given you a way forward & to let you know that you're not alone. We are all hear to help & support you on this difficult road.

Xx A big HUG from me

[Sanmateogirl107]

ask your doctor about prazosin it should help with the tight skin. lots of hugs for a better day. also use wild lettuce extract for pain ebay or wild mountain herbs has it hope this helps love julie

[GGhere]

Hello Campari-king

I received the same diagnosis as you several years ago. I know exactly what you mean about the skin feeling as if it will split. My feet do it the minute I get in bed. I'm old (nearly 80) and wear elasticated support hose - I feel as if this "holds my skin together" during the day and is more comfortable - then when I take them off the skin on my feet starts screaming. I find it difficult to describe to the docs what happens - my skin is partially numb but also so tight I can't wriggle my toes or move my feet as it feels as if it will split. My nose has changed shape and the skin on my face is tight. I look tanned due to the scleroderma and everyone tells me how well I look - this drives me mad because I feel rubbish most of the time.

Perhaps it's early days for you yet as you are only recently diagnosed - it sounds as though you haven't yet been given any medication. I started off with biopsies but eventually I was referred to a rheumatologist at my local hospital and have been with him ever since. At two weeks off my 80th birthday I'm still ticking along - loads of hospital visits (kidneys, heart, lungs etc + rheumatology) and good and bad days healthwise, but I'm glad to say that I'm still here despite acquiring additional health issues along the way.

I'm sorry you are feeling so worried - living with this insidious disease does become easier especially as you learn more about it. Friends and family will take it on board too and understand when you have a bad day. Despite all the things that have happened to me I can honestly say I've not been confronted with anything I couldn't cope with. The good old NHS keeps patching me up.

I hope you receive some positive treatment soon although the Covid thing isn't helping at the moment as appointments get cancelled etc. Keep popping in to tell us how you are getting on.

Betty

[Vtoria]

Time, take a deep breath, these peopleon here are a great support when you feeling down a beat up. I know I've got systematic scerlodoma and what fun it's Been! I go in for surgery tomorrow all my teeth are falling out and breaking, it hurts to walk my lips are thinning and I've got Reynard spots everywhere. Keep your chin up! And though its hard...hang in there and know we all love you!