Newly diagnosed

I am new on here so Hi everyone. I have only recently been diagnosed and to say I am confused, scared and tearful is where I am at. My symptoms at the moment are swollen ankles, feet, hands, bent fingers, Raynauds and rash on face. New this last week are waking up with left arm and hand completely numb until I move. Mornings are particularly painful until I get moving. Fatigue and sore throat with flu like aches also daily. I have been put on hydroxychorquine. Been on them for 7 weeks with little effect. Should I be seeing benefits yet, or is the emotional side and symptoms the norm. Thank you in advance. X

6 Replies

  • Hi bakewell :) I think we have been diagnosed around the same time xx big hugs

    1) my rheumatologist advised me hydroxychloroquine usually takes 6-8 weeks to have effect. Since you have no improvement and new symptoms, I would give yours a call - he may increase your amount or suggest the addition of mycophenolate or similar (I'm currently on the max dose of hydroxychloroquine and that's the next step when that doesn't hold it back enough - I review in 3 weeks)

    2) stress is a huge trigger because it stresses your immune system, so chilling out is of major importance - toward this, I requested some CBT training to learn some techniques to cope with stress - because you can't avoid stress in life. My session is in 3 weeks. Additionally, my GP offered me psychotherapy which I start next week, to deal directly with the diagnosis and how to get my head around it

    3) have you read the scleroderma society website? there's a helpline that's free too which I tried the other day but missed the lady manning the line but will be calling again. Raynauds and scleroderma association website is great too. Don't google it - you just get masses of symptoms and fatality stats. Once you know what you are looking out for and the rest, you don't need to read it again and again - there's no danger of forgetting it!

    4) I understand 100% the things reeling around your head right now - they're spinning in mine too. It took me 3 weeks to talk it through with very close immediate family & that was the worst bit so far

    5) you're not as alone as it feels right now. I realise that sounds a little hollow, but there are thousands living with scleroderma

    6) when you're ready, educate yourself and own it - take control - find out what is happening and what can be done. I am coping a lot by educating myself my work my family and doing everything I can to adjust things to minimise it where I can.


  • Hi Bakewell

    The Bear has given a comprehensive reply I would just add that you may want to visit the Scleroderma Society website and download the leaflet " understanding & managing Scleroderma" it is a good resource to have link attached

    Also you can join the Scleroderma Society and get a pack which includes a list of people with Scleroderma who are willing to speak to others especially those newly diagnosed. There are also local support groups where you can chat with others too . Check the map on the site to find a support group near you or as Bear says there is also the helpline 0800 311 2756.

    Stay positive and calm

  • Hi Bakewell...

    Just a short summary of my story to show you that there is light at end of the tunnel:

    I was diagnosed 1995, 5 yrs immunosupression followed (cyclophoshamide, later Azathioprine), hair loss, bent fingers, facial deformation, weak muscles, legs heavy like lead, pulling myself up the stairs on my elbows, pulmonary fibrosis, gastric reflux, ischemia in legs, ulcers, double vision, unable to hold head upright,.. lying on bed waiting to die for a few months.. 2 children 10 & 13,.. husband working abroad all week.. we had just moved to the UK after 14 years in Germany, so didn't know a soul, no relatives (all dead)... today at 58 I am stable at 63% gas exchange, fit enough to swim every day, lead a near-normal life, no pains, no aches, no ulcers, some facial deformation still visible, no overweight anymore ( 1996 72 kg due to steroids, now 58 kg). No Raynuad's anymore since I moved to Spain 10 yrs ago. I was in a black hole... so I know how it feels..

    Self-education is essential, I had a split personality for a while, I was the doctor and the patient at the same time, one was ill, the other monitored the illness, knowledge really helps gain emotional distance from the illness, but it takes a while. There was no internet at that time, no better sources of knowledge than British Library medical papers which I had to order. There was no forum like this one. I met a few co-sufferers but came to the conclusion tha a common illness is a poor common denominator! It takes more for people to connect than a shared physical state.

    I hope you will be better soon.. I reduced steroids too soon and had a terrible relapse with my CRP over 120 (norm ca 5)... it was a near-death experience. It took many months before I felt any benefit, unfortunately I had a very aggressive onset, which bears a poor prognosis... Today I do not even think about SS anymore, just do my checks every year, I do not need any meds apart from reflux control.

    I hope I could cheer you up a bit.. it sounds like you are not as bad as I was, so listen to Burt Bacharach today...relax and be reassured that this is only a bad dream and you will wake up soon...

    with all my empathy and affection.... G.

  • You must put the rests in at this stage ...Potta about in Morning compleate rest for half hour mid morning .Do what you have to do over lunch giving your self 5 mins rests .Potta about compleae rest then take it easy in eves rest can be done sitting in chair with all joints supported

  • My goodness! You are all amazing! So nice to know that I am not alone. Because its rare, educating family, friends and work has been huge, however, I am trying to stay positive! I had a very stressful job and go in daily, even when husband gets me out of bed lol! I have requested to be demoted and switch with my number two and they have been fab! The Bear, thank you for all your advice, have looked at these sites and they are very helpful. Powodzenia, have looked at this publication and Mum has found it useful to help her understand. Highlighted my symptoms so that she wasn't alarmed. Sootie, wow, you are a true inspiration, so glad you are having a more positive time! Huge respect! Chokers, I do try, have four boys and a full time job, but husband, boys, and work all so helpful. Thank you all so much, this has really helped me! Xxxxx

  • :) made my day this post :)

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