I have had this for 10 years & the past couple of years it has got worse- anyone else struggling ?
Am not coping at all ? - I have CREST... - Scleroderma & Ray...
Am not coping at all ? - I have CREST & my Raynauds is very troublesome - the whole condition is getting me down..
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I too am finding the flares seem to never end. The Doctors are unable to help and I am sooooo tired all the time. Yes it is a struggle and I do try to be Pollyanna, but I get cross at myself. Oh well another day gone and tomorrow just might be better. My mouth, tongue and lips are really bad 24/7 along with everything else. We will not let it get us down! Keep smiling!
I feel for you AliW, I lived a fairly comfortable life for more then 20 yrs. I guess this last yr and a half it was decided I should not go unpunished. EVERYTHING hurts 24/7. When it gets damp I can't stand the pain in my elbows, fingers, knees. I have NO energy. As bad as all this is I try to stay semi busy. I have projects in my church that I am responsible for. I have not skipped one yet and don't plan to. I was told Tuesday I may have to have a pacemaker. My heart is not doing so well. I know this is going to sound horrible, but in the last yr and a half I pray at least once a day and beg God to let me go now. I guess He's not ready for me yet. I will do what I do for as long as I can get up off the couch and do it. AliW just keep going, force yourself up as much as you can. I pray for everyone that is on this community. Have faith.
Hello AliW
This time of year is depressing even when in good health so I know how you feel. I just tell myself that these symptoms are going to be a part of the rest of my life so I have accepted the situation and find whatever happiness I can and has asked God to give me the Grace and courage to cope.
It is very hard to stay positive when in constant discomfort. Everything hurts day and night but I try to potter around as much as possible. Some days I can do absolutely nothing to help myself but I hope tomorrow will be better.
We all find different ways of coping and you will also. Let others around you know when you are not feeling well or happy and try not to be hard on yourself. Be kind to yourself and don't push too much as you will become too tired and weary and more down.
Rest as much as you need to. Give yourself a treat once in a while. A treat doesn't have to be much or expensive.
Mine is a bar of chocolate and a glass of wine at least once a week, watching lots of rubbish tv whilst tucked up in bed (alone) Bliss!
Have a word with your doctor about feeling and not coping and see if he/she can suggest a little medication to help lift your spirits. I wish you well and look forward to reading on this forum that you're feeling perky again in spite of the struggles. Good luck!
I am so sorry you are having a tough time. I have several autoimmune illnesses .... Lupus, Raynaud's, Sjogrens, Graves, Scleroderma, and Fibromyalgia. This best thing I did for myself is start taking a Chelated magnesium (600 mg) and 3,000 mg of Vitamin D3. I still have pain, but it seems more manageable. I am fortunate that my doctor lets me use Percocet. I usually have to take one every day around 6:30. That is the time I get home from work. On overcast days like today, I have to take one earlier. I an going to a football game this weekend and it is going to be COLD. I am going to have to bundle up and wear hand warmers in my gloves. Keep telling yourself "one day at a time". Some days you may have to say "one hour at a time". Find support groups like this where you can vent and have a pity party with no judgement from others. Hang in there! We are warriors!
Hi there so sad that you feel so down and in pain. I think this time of year all that christmas cheer is difficult to swallow and I sometimes feel like baa humbug. Perhaps a chat with your gp may help. Sometimes you feel like a broken record and people as kind as they are will never understand the frustration and fatigue that goes with these conditions. We understand and hope you don't feel alone. All the best.