What can I do more of to not feel loanley and in pain

[nita57]

I don't go out much. I don't mix good with people. I can hardly walk . I vidio chat to famlie some times. The tiredness and pain is unreal . I can't take pàin relief. And have lots reactions to harsh cheep chemicals used in them. Im in agoney 24hrs a day. Xx

[nita57]

Yes I did take my needs thingy

[Hidden in reply to nita57]

So sorry that you feel so isolated Nita57. When you say that you don’t go out much - do you see a doctor regularly or anyone who can help you access one to one support or small groups at all? Or would you be able to join your local Lupus UK group if there is one in your area perhaps?

Sometimes we have to force ourselves to push through the pain and fatigue in order to meet people and get out of the loneliness of our situation. I’m really bad with many medications too so can completely relate to this.

Twitchy 🤗

[nita57 in reply to Hidden]

Oh its not good most of the time I have drs on the phone appointment. They get a plan going but I'm mostly on my bed. I use to go out lots. The funny thing is I'm not depressed. I keep my mind active. Meditation. Its Nr impossible to try get out my legs and back so ouchhhhh . sores on my feet too. Thanks for your reply tho . shame no pain relief for us... We must be strong hobbling plodding . trying I know .

[Hidden in reply to nita57]

Well it’s a great bonus being able to share here with others in similar situations I think. I’m fortunate in that I am not usually in as much pain as you describe. But I relocated a year ago and haven’t got many friends where I live and nor do I feel well enough to go out and do sociable things a lot of the time. I guess it’s the fatigue and the loss of balance and a kind of disassociation from others who aren’t suffering loss of sensation everywhere and haven’t got the fatigue or constant tingle and occasional pain in small nerve fibres.

Although I fractured a rib 11 days ago so I have had a lot of pain to deal with recently - and have managed to get it quite well controlled with Diazipam and Nefopam - which make me very dizzy and extra tired but do take the edge off the pain at least.

Like you though I don’t feel depressed in myself and I love working as an artist and reading and listening to the people discussing things on the radio. But I can’t commit to anything much beyond the odd cup of tea with someone who visits. So it’s a good job we can keep ourselves engaged independently I guess.

Hope it helps a bit to know you’re not alone at least.

Twitchy 😊

[nita57 in reply to Hidden]

Sound the best foot forward so to speak!!!. I get so tired from pain but I have the odd little time I go out on my scooter up the beach . my grand children go too one at a time . so that makes us all happy me because I'm out and with my grand kidlings . and they get some quality time with me also a lovely ice cream... And the mums n dads all happy too. Not often but special days those are. Painting sounds lovely . maybe I should try that. . I do drawings. Lovely to keep positive with this dreaded illness for sure

[Hidden in reply to nita57]

Made me smile about taking your grand kidlings for scooter rides on the beach occasionally! I bet that beats donkey rides of old - especially as it’s with their gran and there are ice creams involved!

I’m going to venture outside in the sunshine of our tiny garden now with a cuppa once I’ve fed our two mutts who are plaguing me for their tea! X

[Chanpreet_Walia LUPUS UK]

Hi nita57,

I am sorry to hear that you are experiencing a lot of pain at the moment but I am glad to read that you like to meditate. Meditation is a great way of increasing calmness and enhancing overall health and well-being.

Would you perhaps like someone to speak to over the telephone? These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at [e-mail] with your name and address.

If you haven't already, you may like to read our blog article on 'pain management' here lupusuk.org.uk/pain-managem...

Here is the link to our factsheet on 'LUPUS: and the Feet': lupusuk.org.uk/wp-content/u...

To read our blog article on 'Managing Fatigue', click here lupusuk.org.uk/managing-fat...

I do encourage you to continue using this forum, we have a really lovely, friendly community here.

Please keep us updated, wishing you all the best.