Really really fed up of this shrinking feeling

Every morning I wake up feeling like death. My hands and feet are painfully tight and I feel so weak and beaten up like I have been in the boxing wring all night long. (I have mixed connective tissue disease and erythromalalgia). Last time I saw prof D he told me I had a normal life expectancy......... oh yippee. Right now it would be a relief to be given a more definitive and deadly prognosis.

The heatwave has meant I have to find a dark hole to crawl into. I've had enough already and the prospect of potentially another 20 or so years of this is not good, not good at all.

15 Replies

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  • I have been through the despair and impatience that you describe before realising that I have a life to live fully and the best possible way. I am optimistic. I am 84 and have had a long and happy life despite my systemic sclerosis. I have learned that I have to do all I can to aliviate my symptoms and learn from my own experience.

    I suggest you enjoy yourself as much as possible. While you are busy enjoying yourself you will find that you don't think of your ills.

  • Thank you so much for your reply. Yes I too am usually very optimistic, in fact I'm still managing to work, albeit part time, but just once in a while the pain and fatigue are just so overwhelming and all consuming. How have you managed to cope with your symptoms? A smile on the face can be difficult to muster when the pain is so crippling.

  • I have ups and downs. I have decided to be kinder to myself and others.

  • Where is your pain?

  • Hi, difficult to pinpoint, but all my joints, particulally my hands and feet. as well as all over with aches and pains of fatigue, a bit like have flu all the time. I also have the discomfort of tightening skin in my face and scalp,

  • Totally understand how you feel, god days bad days I'm learning this is how is gonna be for now on, I had systemic scleroderma aound 17 months, although I can not work no more I have just started to drive again which is fantastic and has givin me a boost

    Keep strong and well xxxx

  • My heart goes out to you AMDP. I know it's difficult to cope with all the different feelings of "unwellness" (is this even a word?) It seems that each day somewhere else is hurting and stiff and energy levels low, too cold, too hot and Oh God! I am fed up with feeling ill. I've been there and it is scary but just hang on in there. You will find ways to cope. Don't beat yourself up. That's the nature of the condition. It's troublesome and makes you weary and fed up sometimes. Keep letting the docs know how you are feeling and report any new problems and review your medication regularly. Allow others to help you when possible. Rest as much as you need to, eat and drink well. Give yourself a little treat everyday and give yourself permission to spoil yourself as much as possible.Try not to get too stressed as this will make things worse.

    Your doctor is right, this is now your norm, it's the same for many of us as you can see from this forum. Life can be very difficult but is also precious so try to cheer up and remember, you are not alone. This is a good place to visit for support and advice so keep in touch and let us ("The RSA Family") know how you're doing.

    I'm sending you best wishes and a big hug. I hope you enjoy the weekend as much as possible and be as comfortable as possible.

    Graygirl1

  • Here, here - thank you graygirl1 and AMDP.

  • Thank you so much Graygirl1. You are so right and I really must try not to get so frustrated with it all. It is what it is and I can't change it, I can only be the best I can be and try not to be too hard on myself. Thanks.

  • Hello AMDP,

    There's nothing wrong with feeling down and frustrated at times. Sometimes I cry floods of tears with frustration and wonder how I shall cope in the future, but I find ways to cheer up. I think of how lucky I am to have some great friends, my lovely mum and ten siblings, my three lovely godsons, neighbours, my GP, the NHS and yes, the DWP for their assistance.

    Most of all I thank My God for my life.

    We all find ways of coping with all the discomfort and you will also. If you want to moan and groan, do so, it's your right if it makes you feel better but try not to dwell on the negative too much. Once again let me remind you to be kind to yourself and don't ever think you're alone. Keep in touch with the forum and let us know how you're doing and if we can be of any help.

    All the best.

  • Pain management MUST be on the agenda for our clinicians. I would even consider acupuncture, testing for food sensitivities in short, anything that triggers pain or auto-immune responses. Ask to see your consultant again and tell him that you want other choices since the quality of life is being eroded. I felt so much better recently when I stood up for myself and said, 'This is not good enough'. We can put a man on the moon but can't manage these conditions? That can't be right.

  • I empathise with all of that. With me the pain comes and goes in cycles except for the hands which give me pain if I try to do things that I can't, but it does lessen afterwards. I use gadgets which can be got from the Raynaud's and Scleroderma Association website, to turn keys, open jars and bottles and tins.

    I cream my hands, feet and face everyday with Acqueous cream (it's cheap so I can be generous with it, not oily, and effective), to relieve the tightness of the skin to some extent.

    Over time, as I got better at doing what I should and have gadgets or people to do the things I can't do, I am less frustrated and stressed. Stress is not good for us but sometimes it can't be avoided.

    Let me know how you get on. I have much experience. What we have is not curable but much can be improved. Things come and go in cycles. I believe in distracting my attention from my pains with entertainment, but it must no be boring.

    Good luck.

  • None of us should suffer pain and as a matter of course we should be referred to a pain management specialist at clinic. It's only in the past few months my joints and muscles have been pain and stiff. I have asked for an osteoprosis scan just in case this is the problem and will be asking for a pain management referral at next clinic. I am loath to take masses of over the counter pain remedies. I have just started yoga. Try youtube beginners yoga. Don't get too down. It's frustrating l know but don't be beaten. I often have a good cry when l can't do simple things. This is normal. Life is sweet and l never take it for granted. I have Raynaud's and Diffuse Sclero.

  • If you are having a lot of pain ask for Pregabalin. Taken in tiny doses and increased up to the level required will change your life - it has mine.

  • Many thanks for your reply. I may well try that next time I'm in a great deal of pain. My issue at the moment more than anything else is fatigue. How do you cope with that element of the disease?