Worried

Dear friends,

I am struggling to regain my health. I have one finger that gets ulcers from having Raynaud's syndrome. I am still healing from an ulcer under my fingernail that started at the end of May. I am afraid because all it takes is one mistake of exposure to cold temperature in air conditioning or cold weather and I could get an ulcer that does heal or takes a long time to heal. I do not want to lose my finger and am tired of having to deal with this. There are other stressors in my life that I keep praying about, like living 350 miles from home and estrangement from one of my sons. I make friends easily so that helps, I am back home now helping my sister with our elderly mother who is very confused. What do I do to overcome all this stress and fear? I feel connected to all of you who are also struggling with Raynaud's and Lupus, etc. I hope I can help all of you in some way. I also hope to get some emotional support and encouragement from you. Thank you for listening.

Sincerely,

Beaglab

[Littleleni]

This is a great resource! It makes you feel

Connected. Try to journal your thoughts, meditate or just talk with someone who will understand. That all helps me. 🌻

[Hidden in reply to Littleleni]

Thank you so much for caring!

[SVBO]

Dear Beaglab, my daughter 10 y.o. was diagnosed with SS last year. She had Reynolds with ulcers before that for about a year - GP was not helpful so we we're managing it ourselves. First we used sea water baths for her hands twice a day (we live not far from the sea) and also a cream called solcoseryl elivera.co.uk/products/solc...

Her ulcers healed and she never had them again so far. Wishing all good health.

[Hidden in reply to SVBO]

Thank you. I appreciate your help and will look for the cream here. Take care of yourself.

[cowhide]

Hello Beaglab, I know the fear you feel - I also have a problematic index finger that was crushed 20 years ago + long standing Raynauds and I have had a permanent ulcer there for about 12 years now. It's actually famous - I recognised it in one of the new SRUK booklets, the photo having been taken at conference a couple of years ago. It waxes and wanes and admittedly is about the best it has ever been, probably as I have been on sildenafil for nearly a year now. But still not healed - it spits out a small lump of calclnosis every 5-6 months which opens it up again. I do use salt water when it appears to be getting worse - with it in an egg cup of hot saline water a few times a day. This definitely helps pre-empt infection and I do have an emergency pack of antibiotics which I have not had to resort to yet. I plaster with germolene every night as this helps to prevent infection and also has local anaesthetic if it is starting to throb. As I work out of doors on a farm I have to wear a glove on that hand even in the height of summer to help prevent dirt muck and straw getting into it and it is really painful on cold days. So I too often wonder if I will end up losing it at some point.

I have other stresses too, produced by my brother in law who has paranoid schizophrenia and is in partnership in the farm business which we are trying to dissolve at present. He is not doing his job properly and we are finding belatedly that paperwork and livestock work is not being completed which he is not bothered about but can lead to prosecutions and fines and loads even more work onto my husband and myself. I think the anxiety is contributing to the palpitations that I am getting which are themselves stressful as we know my heart is enlarged and it becomes a vicious circle.

I have wondered about going to GP to seek advice on relaxation and to learn to deal with the pain/stress. Keeping a diary can also help - getting it out of your system. Other suggestions I would make are taking up some sort of activity that you can 'lose yourself' in - preferably a group basis - a choir, a craft group, a book club, or similar and there is also nothing to beat fresh air and exercise - a country walk - if you are able to, just make sure you wrap those extremities up! Keep safe and keep posting - it helps.

[Hidden in reply to cowhide]

Thank you for your help cowhide. I appreciate your sharing of your experience. There are so many responsibilities besides myself. I feel a lot if joint pain and fatigue right now. I take a lot of vitamins and the Niacin is helping with the Raynaud's syndrome. Please stay in touch. I appreciate your kind words.

[florr in reply to cowhide]

Low dose asprin..81mg helps my husband when he has palpitations...and 0 caffine is needed.....I myself have reyneaud..keeping warm and away from a/c....helps..my thermostat gets out of whack...but im coping...if your core body heat is low ..reyneauds is worse-!!..

[cowhide in reply to florr]

Thanks - but I can't take asprin! Take very little caffeine, usually have decaff. Definitely agree about the core body heat!

[Hidden in reply to florr]

Thank you. Niacin, 500 msg helps me and pocket handwarmers when I am in AC.

[marie5454]

It's difficult dealing with health problems when there's so much happening in your life as well. You then have to weigh up the pros and cons of whether some things are worth tge extra effort. You have to make time for yourself to and learn to relax, easier said than done I know but the mind is a very powerful thing, it can make you ill but equally can make you well...I hope you find your own path to peace of mind, I like going in the countryside or near the sea and I do tai chi and walk and play with the dog, I love craftwork too, you have to connect with your inner self and readjust your lifestyle to make you feel whole again. Good luck, I hope things improve soon for you, life is never as straight road is it?

[Hidden in reply to marie5454]

Thank you for your inspiring words. There are so many small things that take up a lot of time. It is so hard to accomplish things when dealing with pain and fatigue. The Bible says that in earthly life there will be struggles. Heaven is our place of true peace. Thank you again. I appreciate your kindness.

[marie5454 in reply to Hidden]

Yes, life can be full of struggles, especially when we're not feeling very well too. Just sit and 'be' sometimes, I wish you well, much peace and health but also we can find happiness here as well, it needn't be all doom and gloom, it's a beautiful world when we open our eyes. Best wishes x

[Hidden in reply to marie5454]

Thank you Marie. I appreciate your kindness. This is a good place to help others and reach out.

[honeybug]

Bless you beaglab. 😊🌿🌸🙏🕊🥰🤗💗🌈🌿🌹

I just said a special prayer for you sweetie. So hard to have your severity of Raynauds (mine is suppressed much by my rarest form of Inherited Erythromelalgia) I do understand it’s dangers.

Please take care and may you always be protected from the cold or stresses and may your ulcers heal completely.

Love and prayers EvaJo

😊🌿🌸🦋🙏🤗💗🥰🕊😇

[Hidden in reply to honeybug]

Thank you for prayers and kindness. Merry Christmas!

[honeybug in reply to Hidden]

Merry Christmas 🎄 to you too sweetie. 💗🙏🕊