Wrinkly fingers

I've raynauds my fingers tips are all wrinkled like I've been in the bath for a long time , severe hair loss , burning tingly feeling in my hands and lower legs really dry eyes .. I'm on steroids atm qovic malaria tablets and adalat retard 10 mg but nothing work , told the rheumatology just order bloods test but usually they come back normal I think they need to do different tests .. I think nerves damage or something similar , lost weight and my knees are big like 'housemaid' knees, my shoulders are disappearing and one is lower and smaller than the other ( osteoporosis) I'm having a bone density test next month , tops don't fit propaly they always hung one side. I had enough , I'm only 46 and lupus ruined my life , work, relationships , I can't do anything anymore .. What's the point! Sorry for the rant . Thank you. Maria 😕

10 Replies

  • I'm sorry you are feeling so low at the moment, Maria.

    The point is... Medications are improving all the time and there is HOPE for better days.

    I truly understand how you are feeling.

    I've been so close to falling off the edge so many times but life can, and does, change.

    My fingers are wrinkly too (always) and I struggle with the cold horribly. I currently have chilblains on my toes. Hair loss too and I use drops for my eyes, especially after using the computer. (Keep them in the fridge, the relief is better).

    I'm 50, had this amongst other immune diseases for 25+ years.

    I understand and know of what you feel.

    Please try to take it one day at a time. There are different meds to take and I know that finding the right consultant is critical... I've had good and blooming awful ones.

    The point is, you didn't ask for this... So don't let it take you, don't let it own you. Don't give up or give in. Rest when you can, just do what you can when you can. I know how hard that is and these words may sound like platitudes and that I couldn't possibly understand how you're feeling... I promise you, I do understand.

    It is incredibly hard to keep going all the time and look to the future... Things can change. Try not to look to the future right now, just focus on your day to day needs. Take support where you can, don't be afraid to ask for help. (It's taken me so many years to ask for help, but I have it now, most of it is mental help which keeps me strong). Ask your GP or consultant if you can see an OCcupational Therapist, perhaps if they could visit your home to see if there are things that they can provide to make life a little easier. I know, even just to cook, can be absolutely exhausting... Unable to lift sauucepans, the general chore of cooking and cleaning, climbing the stairs can be like climbing a mountain, turning over in bed is so painful you want to cry...

    It can get better, it's a case of finding the right med regime for you. Make the consultant listen. When you swell up, rash, lose hair... Take a photo on your phone if you have one or iPad or whatever. Show them, keep a diary, document what goes on daily basis. Don't let them not listen to you...

    There are folk who will listen and when you need to rant, vent it out, get it out, try not to keep silent and let this illness consume you.

    Gentle hugs your way, wishing you well and sending you strength from a stranger who does get you, get what you're saying and is listening.

  • Thank you so much but how can you do it? When you see people your age still do active , healthy Abd happy , I'm on my own , because of lupus I only had one child because Dr all those years ago advise not to have children anymore , I regret it now , my only child he's 22 and have his own life , my husband died , I don't feel good enough to start a new relationship because I'm to difficult to live with , my mother she is old and fragile and lives in Italy (when I'm originally from ) but I don't have any other relations there..I don't think I have anything to live for and I hate the way I look . Sorry and thank you xox Maria

  • Ahhh, how do I do it? Well, it's a mindset which has taken me many years to find. To be honest, I never believed I would have the strength to carry on and was looking for the "out". Not that my family knew this but I'd been to a NYearsEVe party, was so ill and the next day, 1st Jan 2008 decided I think was time for a long sleep. Strangely, I don't know how, but having never talked on the internet found a bunch of strangers who... I have to say... Saved my life. I started talking, was given umpteen different perspectives and listening ears. 6 weeks later I was having my 3rd foot surgery, the big one. Fusing the right foot and cutting the other one to pieces. The strangers in my weird world of the Internet held my virtual hand for the next 7 years and saw me through the bad times and the good times. This was a U.S. Based forum, they gave me a reason to live. Long story but won't bother you with the details.

    Lond and short, my mindset changed to one of living, laughing and loving. I had sworn off men after going through divorce and selling my house (with both feet in plaster), put the money into a fund for my youngest son's education, who had been my care since 8 years old and he went to boarding school. My eldest son has Asperger's ... We had to place him in care due to his violent episodes and attempt of suicide at his special school.

    So... Roll on to last year where last summer I had the biggest flare of my life. Life ... Wasn't life. It was existence of meds, meds and more meds. Bedridden, pain and more pain.

    During this time an OT came into my life and taught me to accept what I can do and what I can't do. She taught me by listening to me and getting me to figure out the questions you're now asking. I also allowed the love of a good man, who though he lives abroad, has supported my every breath and shoulders the pain day in, day out when I feel weak. He's many 1000s of miles away but he's in my heart and soul. The strength one can receive from the least likely ever scenario is staggering,

    Nuff said. The mindset is the key to everything. Acceptance of the limitations the disease gives you, acceptance that life can be lived this way but one has to believe that there is hope. I know this may all sound gushy but it is the way it is. Acceptance to not take the guilt for not being able to do the things others can. Acceptance of living the best I can be... Not the best others expect me to be.

    Though I don't recommend the cut off from the world like I have done... But living the hermit life I live is a blessing. Not having to dance to anyone's tune, just keeping my head focused on what and who I am, what I can and can't do. Live as I choose to live albeit if it's not the norm.

    It is possible, anything is possible.

    Please don't for one minute think that I don't have bad days. I do. All the time. I wonder how I will get up in the morning, how I will get through the day, what will tomorrow bring. When will the next flare consume my body.

    I started azathioprine a few months, not sure how long ago to be precise, but it made a difference. I'm not in remission... Ha, I have way too many auto immune responses to put anything in remission, but some steroids (which I abhor... 40mg day and petered down) got me back to being able to breathe again without the pain ravaging my body.

    Some days, no matter how much I want to get up and about, I simply can't.

    My chap accepts everything about me... From IBS to now taking Valium and zopilcone to sleep. He supports, encourages, takes a positive for every single situation, shows me how strong I am, listens to every whine and whinge.

    That is the difference for me.

    I know he is a rare breed and I am blessed. For one who had thought i could NEVER EVER trust anyone to accept me just as I am, I was wrong.

    Please don't lose heart. It doesn't have to be traditional support that you need... Even talking here and finding like-minded folk who can offer you that support... It can turn it round, bring perspective and give you a chance a talk and be listened to.

    There is not cure... Maybe one day in the future there may be a cure, but I won't hold my breath. So I live every moment I can and take the rest when I need to. But until a cure may or may not come along, you must ask your doctors to listen to you. You must try to accept that this is what we have... This is the life we have been given... So we have to do what we can to make it work.

    Acceptance... Gosh, it took so long to accept who I am and what I have. I turned 50 and thought... And still do at times think... HOW, HOW CAN I DO THIS ANOTHER 40 years...

    Because I can't change it. It either defeats me or I find a way to live with it.

    You can however try to change the mindset. Give yourself a break, give yourself time to come to terms with the limitations. The fatigue is never ending... It does absolutely destroy you if you let it. So instead of letting it destroy you, you don't need to fight it, you need to accept it for what it is.

    No one asks to be ill. So when you are, despite a very non-understanding world of folk who can't possibly understand how it eats you from the inside out, you... Only you... Have to try and accept what is happening.

    Push your doctors, they are the ones who have the ability to aid you. Don't accept a brush off. Document daily what happens to you, photograph your ill bits and pieces. Show them. Make them see that you are suffering and struggling.

    Finally. My camera is my safety blanket. I can photograph the same flower, the same piece of bark, the same bug over and over. It's takes the pain away, I see only through the viewfinder. It's the feeling I'm capturing and the feeling that then makes me realise that I can still FEEL... It's a light at the end of the tunnel that makes me realise that yep, I may not get up in the morning and be able to walk properly, or move my shoulder, or bend down or have hands that work... But it MAY, in the same moment of thought, be a good day.

    Live on your good days and on the bad days, always believe that tomorrow may not be quite so bad.

    Day by day, sometimes hour by hour. Don't let the future scare you. There are so many things happening in the world that can advance medicine and one day, there may be something that will really help, if not cure.

    I am so sorry to hear you lost your husband. One of my closest friends husband died on Jan 26, 2008. I was with him when he died.

    I know what she went through, I can only imagine what you have had to endure. I do understand loss... My eldest sons attempt of suicide broke me and my family... I didn't see him for over 3 years ... He's now 22 and lives in the system so-called welfare. What a joke that is.

    So I do understand that everything you go through is hard and difficult and I would never pretend to completely understand how you are feeling, but I can empathise with how you feel.

    What I'd like to get across to you though is please don't give up and let the disease beat you. Please talk and talk and rant and vent and know that you are not alone in this world and that even tho these are just words on a forum, that 7.5 years ago that was all that I had to get me through... just words and strangers...And they did listen and they did help me from the other side of the world... And when I listened to them and knew they were holding my hand, they kept me from doing the worst thing possible, which was giving up on life.

    Please talk when you can and know you are not alone.

    Wishing you healing and big but gentle hugs.


  • Just to say too, ask for a CRP blood test which will indicate inflammation if it's raised. Mind you, even when it's not raised you can still be in untold pain... But ask what your CRP level is and an AST (liver function tests).

    Bone scan is easy, you lay down and normally they do a hip and wrist... Well, that's what I had done last year. previous to that I had an isotope injected and then a 45minute scan but I don't know if they do that anymore... That was about 10 years ago. I was steroids for 6 years, big steroids... I was such a moon faced hamster. My bone scan last year came back all good... So fingers crossed for you.

    Remember, if poss, take photos of your knees and hands etc. Show them, make them listen to you.

  • Thank you so so much , I found a charity called may tree where if you feel suicidal you can go and stay for 5 days and you 'll have volunteeres 24/7 talking to you or listening , I rang them few times but I haven't decided about going yet , because I have few Dr appointments over the next month .. J hate the fact my apperence changed so much in 2 years I look 10 years older , I know I'm superficial but the hair loss and the thinning of the skin , the rashes in the face who makes you look like an alcoholic , I just can't get over it .. I think my son would be better off without me, because I'm a nightmare to live with, he told me that sometimes I drag him down with me and he become depressed . Thank you again , very dark time for me and can only get worst because I don't respond to meds . xox

  • I'm so sorry you feel this way, Maria.

    Your son would not be better off without you. He's lost a parent and he won't want to lose you too. You are not responsible for his life now, he has his life and he is living it. I understand how hard it is for family and friends to watch loved ones go down hill and to be sick all the time. Sometimes they say things that make you feel worse ... A lack of understanding at how close to the edge you are. Your son would not want to lose you. Harsh as this is going to sound, imagine his guilt at losing you because he couldn't support you through this.

    You have to take care of YOU before anything else. If you can get help for your mental health then you can find a way to deal with your physical health,

    You cannot change the way your body is being ravaged by the disease, but you can and must get help for your mental health.

    I'm not a doctor, not medical, not anything other than a fellow struggler.

    Please call your GP and get an urgent appointment. Tell your doctor how you are feeling and that you are not coping, that you need immediate help. There is a checklist for mental health... I believe you would answer yes to the questions they would ask you. They should refer you immediately to a psych. Don't take this as a win for the disease... Take this as facing it head on and asking for help. Please do not let what's happening to you now to destroy life.

    You are worth more than you can possibly imagine. That is what you must try to believe in.

    I honestly, from my heart, "get" your despair right now. I've been there, I get it. It can change.

    If you feel as though you can't keep doing this... Make THAT call.

    Get to your GP, call the charity, make the call to someone who can provide you with the lifeline.

    Maria, you deserve the chance to get help but only you can do this... Your son would not be better off without you. I can see how you could think that but he wouldn't.

    If you can't say the words out loud to the charity... Print off your posts here and give them to someone. Give them to the doctor, tell them you are scared, tell them you feel helpless.

    Please believe me, there will be something / someone that can help until you feel stronger. If you need to go to the charity, don't wait.

    Your life is worth something, Maria. Keep talking, if you can't talk out loud, then write. Be honest with your GP about how you feel. Seek out the light to take away the darkness you are feeling. You can do it, you can.

    I remember my darkness and I know how scary it is.

    Reach out to the charity, the doctor, A&E if necessary. There are folk out there who will help you so please let them.

    Do make the call, Maria. Please be gentle with yourself.

  • Thank you for pit up with me, I'm in a coffe shop waiting to go to hospital for more blood tests .. This is my life arm, this disease is killing me slowly everyday there's a new surprise and the Dr answer ' oh well that's lupus ' I wish this monkey on my back finally takes me once and for all! .. Bloods probably will come back satisfactory ( like mist of the time) and I'll carry on suffering in silence . Thanks for listen to me bet you want to shout ' just get on with it' but I can't now when I walk in the street I'm very self conscious I think everyone is looking at me because I look weird with nasty looking hands and fizzy thinning hair . Sorry again feel free to block me . Xox

  • It's not easy to "get on with it" when you are feeling so rough and I'm the last person in the world who would say that to anyone feeling so ill. You didn't ask for it and you don't deserve to feel ill in a world of medicine where they can fix others. Try not to worry about what you look like... Tell your doctor today how you are feeling. Make them listen to you Maria, make them look you in the eyes.

    No blocking going on here. Holding your virtual hand and hoping you will feel stronger.

    Keep talking, please tell the doctor how you feel. Don't suffer in silence... Talk, vent and let them know that you are struggling and need help.

  • I know you are right I shouldn't worry about my look but this is how bad I look : I started chatting on a website with a 64 years old man and I'm 46 , we got on very well until with exchange pics via email and when he saw me he said politely bye lol.. A guy who was 18 years older than me 😳..gosh I must look horrific . Ty xox

  • Poor you do keep going though, I felt awful yesterday had a good cry and tried to pick myself up I am a single mum with. 12 child to support and am self employed - I find it so hard to work some days and pay the bills. You will get through this wave - sending you good thoughts x

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