Working and life challenges

[Jovialjo]

HiI recently got diagnosed with Systemic Sclerosis after 20 years of misdiagnosis.

As a result I have become extremely resilient as had to be but I don't think I've done myself any favours I keep getting told I wouldn't look the way I do if I was "severely affected " but I'm just feel I may make extra effort as my appearances has been my trade mark and career for a long time and I am abnormally strong of mind so kept going

But now I'm falling appart and I just wondering to what scale other people are suffering and how do they work and function as I keep getting told I'm not at the stage of getting signed off?

Currently I constantly dropping things, my hand as tight and at rest naturally curl up. My arms and legs are constantly in pain and my left leg drags yesterday I basically shuffling around, side stepping one at a time to get up and down stairs at snail speed.

My vision constantly blurs in and out

I get pain In my chest if I over excert myself which can just be 5 mins of brisk walk when at worst.

My leg and bum muscles seem to have disappeared I feel so weak.

I had to spend all day in bed Monday because a dared to go bowling Saturday and took me two days to be able to get back to shuffling around and that had every bone in my body to turn up to the social event in the first place as over last year my husband has been socialising without me as my body just doesn't have the strength to stand walk or attend.

I have pain in ever muscle and muscles I didn't know I had.

My head constantly hurts and my speech comes out all back to front at times.

I struggle to swallow.

I spend the whole day just focusing on making my body move, I fall asleep as soon as I get in and can't find strength to clean or cook, I just feel like everything falling apart as I can't achieve anything in person life as I'm exhausting myself just getting through day work.

I used to be incredibly successful business owner and now it's hanging on by a thread because physically I can only just about cope with getting through the day.

I also have cyst on my kidney

Am I alone?

I have hydroxychloroquine 200ml a day been taking about 2 weeks but not sure seeing any major difference

Morphine patches which I'm currently on a break from as worried about long term effects of constantly taking them

And recently prescribed pregabalin which not started taking yet.

Any feedback greatly received.

[Elviscat1]

No disrespect but ae is not for chronic illness and she will potentially pick something up waiting ??? Many hours before being fobbed off with steroids perhaps!!! Contact consultant PR for urgent app or the rheumatology hotline 🙏

[cwresearch]

I am so sorry to hear this, as you are clearly very affected and not in a good place. There is little that I can suggest except to get an appointment with a Rheumatologist (or whoever diagnosed you) and repeat all of this to them. It sounds like you need urgent attention and I sincerely hope that you get the help and support that you need. Good luck.

[Buttsy]

Hi,

I feel for you and sympathise with the Situation,you sound like you don’t know where to turn and I understand that feeling, I to suffer like you on a daily basis coping with the pain ,brain fog and fatigue, I gave up work a couple of years ago because I was struggling and couldn’t cope on a day to day basis just couldn’t do what I used to do. I find physiotherapy can be helpful and I have been prescribed Amitriptyline,Pregablin and Omacor Omega 3 x4 a day. I do however feel the GP struggle to know what to do and often ask me to get in touch with the Rheumatologist.Recently I have been suffering with dry eyes ,nasal passages ect and he prescribed drops for my eyes and cream for the skin around my eyes but the typical blood test that confirms Sjogrens came back negative, so I spoke to Rheumatologist nurse and she said they will look into at my next appointment, the GP was happy for me to get further help,possibly tests and advice from the Rheumatologist.

My Rheumatologist is helpful but however sometimes he does say your doing okay and look well ! Don’t feel well,and can be a little casual in his approach ,he said there is no cure, which I understand but it all about managing the symptoms and being as comfortable as possible for as long as possible.

I would ring the Rheumatologist secretary/ nurse and ask for an appointment . Explain you daily struggle.

As for work , it depends on your situation and age, you mention you have your own business which must be very demanding, if you need to stop working could you look into what help you can get , may be citizens advice or welfare right could offer you some advice, about your entitlement.

Who has said you’re not at the stage to get signed off ?

You are not alone.

Take care , 🤗

[Clangerscat]

Hi Jovialo, I’m so sorry you are having such a horrible time. You certainly aren’t alone in this, many people in this forum struggle with holding down jobs and managing their daily lives. It is important you are kind to yourself and don’t push too hard when you are feeling low. Give the hydroxychloroquine time, it takes a while for these drugs to work. Out of interest have you been seen by a rheumatologist? If not you need to be referred so that you can get the best treatment. Take care of yourself, hope things improve for you soon.

[Rushmere]

Hello Jovialjio,I have had the same disease for 25 years and took years to get diagnosed, very frustrating.

You need to make an appointment at the Royal Free hospital in London, they are top in the UK for this disease.

But they can only try medications and see if they work, but go back if they aren't and they will try something else.

I do take a lot of supplements as well.

Please be free to contact me if you need anymore help.

[SBQ1971]

So sorry to hear what you are going through, apart from anything else the chronic fatigue is something you can't explain to anyone who hasn't e perienced it. you are not alone, but do keep on with the Hydroxychloroquine as others have said these meds take time to take effect. Methotrexate was my saviour and I have taken both for many years. Do try and get to specialist Rheumatology unit. I can empathise with the " don't you look well" syndrome, I am almost 86 and although a bit tight around m y mouth my facial skin is quite thick, so very few wrinkles and genetically my hair still looks dark, so I'm always being told how well I look they don't see the stiff and aching joints and muscles or inner tiredness. Hope you get some proper treatment soon, good luck .

[F9927]

Sorry that you are struggling I am sure many will read your post and it resonate. I do think having any autoimmune disease preconditions you to just keep going but at what point do you slow up to not cause additional issues.

Only you know when the balance tips, I would say you need to rest and seek help from your team. Sending a big hug 🥰

[OldTed60]

Well done for having achieved so much despite 20 years of struggling with this disease! I do really agree about long journey to diagnoses making us more resilient. I’m a freelance professional artist. I’m frustrated to have never really achieved the recognition or a living from this due, partly, to decades of fatigue, living with undiagnosed autoimmune diseases while prioritising my family’s needs when younger. It took me 12 years under rheumatology to get correctly diagnosed with Systemic Sclerosis, but a lifetime to get other conditions such as EDS recognised - so I can relate to this aspect of your post too.

What I will say is that, having been misdiagnosed with RA, amongst other conditions, I have tried most of the gold standard treatments ie Methotrexate, Hydroxichloraquine etc. For me personally, Mycophenolate has been a game changer and slowed down disease progression. I now also get Rituximab although have only had one round so far. I didn’t tolerate Pregabalin, Gabapentin etc - in fact they made me pretty unwell. So I now only take medications which will hopefully slow the disease down rather than just address the symptoms. I also get monthly Iloprost infusions. All of these treatments are heavy duty but they’ve allowed me to keep going with my artwork and this is what gets me up and keeps me motivated. Money-wise it’s a struggle to get by but we don’t travel far or spend much on fancy lifestyle things. What you’ve not had you can’t miss!

If it’s a bed day for me then it is but usually I find that walking our small dogs for 30-60 minutes a day means I can work and nap in turn with some nibbling gluten free food items and sipping hot drinks while I work. Regarding my appearance - I struggle with my teeth, strange lips and very red spots on my nose. I’m often told how well I look. I just say “thanks so much” - genuinely feeling it. I looked so much worse when I was younger and undiagnosed, face covered in eczema, very pale, overweight with thick goitres in my neck.

No one, including many rheumatologists, know much about Scleroderma. But if they look it up then they’ll see that the classic skin changes haven’t really affected me much so far. Maybe I’m lucky - although my poor gut is the exception ! Or else I am a slow burner with scleroderma because the Prof at Royal Free I saw in 2023 said my nailfolds showed signs that it’s early so perhaps there’s worse to come.

I would say that it’s worth pushing for stronger disease modifying medications if Hydroxichloraquine alone isn’t enough.

[KathleenMary]

Your not alone.I too have limited scleroderma plus Raynauds and osteoporosis...

I take numerous meds and yes I do feel tired all the time,I get breathless ,( COPD)can't walk far but the consultant says in a jolly way we are keeping it at bay

[cowhide]

Sorry it has been such a battle getting a diagnosis, you must get seen by a rheumatologist and you may find that additional medication may help. You should also get your vitamin D levels checked, vit D deficiency is common in scleroderma and can cause bone and muscle aches, fatigue and depression. Een though I am outdoor worker my levels were very low and I was prescribed a high dose to get me into the normal range which I now maintain with an over the counter daily dose.

When diagnosed, you should have been booked in for a range of baseline tests eg echo, lung function tests, as well as a range of blood tests, and then you should receive annual echo and lung tests to keep an eye on things.

You may also have non-scleroderma things going on, I had awful leg weakness and pain (calves, buttocks, thighs) and some low level back pain last year and I actually have spinal stenosis due to disc prolapse which my rheumy says is not related to my scleroderma.

I am finding that massage, chiropractic and physio are all helping with my leg weakness and pain.

Good luck and hopefully with some more expert intervention things can get easier for you.