feeling anxious and alone

[Jaq1971]

hey all I had my rhemotologist appointment this week after many months of my latest issue swelling in joints knees feet ankles wrists and fingers so full blood work taken talks of physio not sure how that would help ? To find out my CRP is high all of my liver tests are high and I have to start taking methotrexate and folic acid alongside my viagra domeperidone esprazole and Hydrochloqochloroquine on a double dose of 400 mg I feel very alone currently and worried this is the beginning of the end for me 😢

[Clangerscat]

Hi Jaq I’m so sorry you are having such a horrible time, my heart goes out to you. I think we are all guilty to a certain extent of waiting for the diagnosis that tells us the scleroderma is accelerating and we are going downhill. I know I have been in tears about my blood results and have just needed time to work out my new normal! I think you need to talk to your doctor or rheumatologist about these results so you have the facts. Sometimes it is really difficult to tell the people treating you that you are scared but you need to. It might be easiest to ring or email your specialist nurse and tell them. They may be able to explain things to you or get a doctor to call. Try not to despair, we are all here if you need us and are with you all the way. Take care.

[ruablue]

hi Jaqs - so sorry you are feeling alone with such overwhelming information and the unknowns of new medications. It is understandable with all that is going on. I have had fluctuating blood numbers over the past 18 months and it can be very scary but I spoke to the medical team, set out a plan, added new medications to my program and so far it has brought most of my number's back into into normal parameters and I have come off one medication and numbers remain stable. These rheumatological diseases can be quite temperamental and I have definitely found that stress in my life brings on big flare ups so I am working hard to keep stress levels as low as I can.

You are not alone - there is a gang of kind strangers on this forum, right behind you. Always here with helpful support and guidance if you need it.

Sending virtual hugs

Take care of yourself

[Jaq1971 in reply to ruablue]

Thanks so much I just get overwhelmed by it all xx

[cpns]

Hi Jaq,

My heart goes out to you.

It can be so scary, I completely understand your fears. I am on very similar meds & doses to you. I found the introduction of weekly Methotrexate & folic acid a few months ago, followed by seriously fluctuating monthly blood test to be the my most recent emotional tipping point. Reading your comment "is this the beginning of the end for me" really resonated & the shock on people's faces when I told them about the methotrexate did not help me either! But, I have decided that it is on trial. For now - whilst not my biggest concern in the first place, while taking the meds my Raynauds is CURED! Obviously stop taking the meds & back it comes, but right now there are no more throbbing, or numb, functionless fingers, or seriously swollen fingers, my nails are growing including one that I was in danger of completely losing - with no guarantee of it's return (with all of the challenges I have this really upset me - probably because it was visible to all - clearly I am a bit shallow!)

I am really tired & picking up ever cold, or chest infection going (I work in a day nursery), not sure that I am more mobile, but odd things like the calcium build ups on my knee caps that have been there for years & prevent me from kneeling down have visibly decreased & my banana fingers seem a little straighter on a good day. I am not sure exactly what was suppose to improve with these meds. If this is as good as it gets then I need to debate if it is worthwhile for me right now.

I go back in August & for the first time in years I am going to be brave & ask the doctor how HE thinks I am, where he thinks this is going & how fast. They always ask ME how I am, but, I am always too afraid to hear how they see me & listen to their prognosis. I always get stressed about these appointments & to be honest a little tragic. But this is my life, I have had more than many & I might in the end have a much better run than any number of my friends, or even ALL of them! Who knows, my disease progressing is unpredictable. I never assume that my progress will be the same as anyone else's, I only read things that might help me, or where I think I might be able to help someone else & I don't look for trouble that has not yet knocked on my door. We all do it differently. There is no right, or wrong way

Sending you a huge virtual hug. You are certainly not alone & when you are surrounded by people that as much as they love you, - have no idea what it is like to be you, pitch up here & have a chat, there will always be someone passing by who will listen and want to support you

I hope that today is a good day in your world xxx

[OldTed60]

sorry bit late to this but wanted to support others here in saying you’re not alone at all. If it’s any consultation at all my bloods were awful back in 2020 when I was still mostly diagnosed with Sjogren’s but also systemic sclerosis. I started on 3g Mycophenolate and 2 years in my inflammatory bloods were still high and I felt my health would never stabilise. But for the past 2 years my inflammatory markers have dropped to within range and my severe GI issues have broadly stayed the same - once my SIBO was finally diagnosed and treated. They must be good now because I had my bloods done daily while in hospital after stoma surgery and after 5 days they stopped testing as they were normal. I credit long term mycophenolate, monthly iloprost and Rifaxamin for this plus highest dose losartan and maximally treated hypothyroidism. My skin is becoming a bit tighter and shinier, hands tighter but not excessively, same with my Raynauds and my gastroparesis. I was formally diagnosed last year and now things point more to moving from limited to diffuse. I also have seronegative Sjogren’s and lately the Sicca has been more active in form oral dryness and cough so that is seriously detrimental to my wellbeing if I let it get to me

But I feel more positive then I have felt for some years and my expectations are more positive too. I don’t expect spontaneous remission but I do believe that my treatments are finally holding things at bay. This could change but my rheumatologist is quite young and very good at monitoring me so I’m hopeful that I’m through the worst for a while at least. X

[Jaq1971 in reply to OldTed60]

Thanks for your response I just feel a bit deflated I have been diagnosed with systemic sclerosis sticky blood and diffuse scleroderma with secondary fibromyalgia my digest issues seem a bit more stable as I’m now on domeperidone that’s seems to help my swallow. so have to take the wins I didn’t get on with nifedipine so they have put me on silenafil and I start the iloplast infusions in September. It’s the joint pain and swelling of my ankles wrists fingers and knees so painful so they had already upped my hydroxychloroquine to 400 mg a day and now starting the methotrexate 10mg once a week as of Monday. I know there are people who are no doubt way worse off than me it’s just really frustrating I’m now looking at selling my business because I just don’t have the strength mentally anymore to cope with the day to day stresses. Unfortunately my mental health has not been great since diagnosis and I have PTSD medical and anxiety so just have to come to terms with me now and letting go of who I was 5 years ago it’s rough xxx

[OldTed60 in reply to Jaq1971]

The Wren project is a UK charity providing a listening service for those with autoimmune diseases so well worth contacting. Meanwhile I can only say that for me it’s important to try and focus on the fact that these medications work systemically but can take a long time to feel the benefit of.

We all hit low points and having a rare disease is extra isolating. I’m on a bit of a rollercoaster mood wise myself - especially a few weeks after major surgery for a bowel stoma. I got told off today by a lovely woman I met while walking dogs on the beach. Somehow it emerged that I’d just had major abdominal surgery and she asked what an earth I was doing walking so far, maybe 5k steps in all, when I should be resting and recovering still. But for me personally getting my daily exercise and fresh air is key to recovery. Pain and coming to terms are all relative. For me this new pain is not a patch on other pain I have lived with for many years. At least this pain has a clear reason behind it and will most likely fade. It took me 12 years of misdiagnosis to get diagnosed correctly with systemic sclerosis and to be honest the unequivocal diagnosis came as a relief. Since then everything has been easier because I’m taken more seriously. Whereas I found the lack of diagnostic clarity really distressing and very hard to come to terms with. Sure I sometimes feel overwhelmed by this wretched disease - especially in middle of night waking up in pain. But i tell myself that the more conditions I collect the less likely they are to be as severe having been told that overlap autoimmune diseases have a better overall prognosis. If I wake or struggle to sleep then I get myself logged into something distracting on BBC Sounds or listen to a meditative sleep app and usually I get back to sleep. There are many things you can do to calm the spirits but you have to be proactive. I would start by contacting Wren project. Take care xx

[cpns]

Jaq, This is not fun, or easy, but like OldTed says things can stabalise, often for lengthy periods of time. Never be afraid to say exactly how you feel on here. We have all had patched where it was just to much to take on your own. But, often you don't want to worry your family & sometimes you don't want them to hold onto what you said on your most challenging days - because tomorrow you might feel brighter & you want them to accept that too & smile along with you. Here you can say it all, just as you are feeling at the time. There will always be someone on here who recognises the emotion, even if their journey is somewhat different.

ISending virtual hugs xxx

[Redwine53]

hi Jaq1971, I felt exactly like you a few weeks ago when after an echo and lung function test showed I had a leaky heart valve and possibly pulmonary hypertension, I went into melt down, was convinced I was going to die in a couple of years.

Luckily I saw a young gp who reassured me, listened to my heart murmur and said it was slight),

wrote to my consultant ( I was offered another appoint in 2 months time) and the gp suggested counselling ( on a short waiting list after an assessment within 3 days of applying).

Consultant’s appointment was great, now an echo and lung function test yearly, what a relief.

I made myself keep off Google too.

I am slowly coming to terms with it all I think, but who knows where any of this will go.

I am actually in the process of doing a power of attainment for health, naming my daughters. I already had a poa dot finance. I am probably a bit older than you, at 71, having had SS for 5 years now.

Hope by now you are starting to get your head around everything, I am on loads of medication too, and live alone since my husband died four years ago, you are certainly not alone on this site.

[Jaq1971 in reply to Redwine53]

Thankyou red wine I appreciate your words and it’s just one blow after another really my most recent symptoms are just making me anxious I have a 9 year old son and I can’t even kick a ball around with him I think my anxiety has got the better of me and I do have a therapist who is amazing I just need to accept the new version of me and stop thinking about what was and accept what is really ❤️❤️