HELP old lady!

[provence2022]

Why isn’t there a guide for folk that fall victim to this problem …..why do we have to go through the symptoms with no advice or support ….

Spent my whole life in the health service and feel unsupported and lost…..

[OldTed60]

Hello. Can you tell us a bit more about when and how you “fell victim” to Lupus or autoimmune disease? Are you newly diagnosed and have you contacted Lupus UK yet for support and information? You might hopefully feel less isolated if you contacted them and could meet others with SLE and related conditions.

But coming here is a great first step. I have a mix of overlapping autoimmune diseases which is quite isolating as there isn’t one group or charity for people with overlap syndromes - so we end up on lots of groups. But I have made friends with others with similar conditions and this really helps.

The problem with Lupus and its friends is that they are rare. Even Rheumatoid Athritis is relatively rare compared to Cancer and other diseases such as Diabetes and heart disease. So there aren’t huge charities with centres like Maggie’s where you can walk in for a cuppa and support. But there are forums like this one at least.

Take care and I hope others will respond soon - although feel free to explain a bit more about your diagnosis and what kind of support and information you are looking for.

Kind regards,

OldTed60

[KnitSewPurl]

Hi Provence 2022,How do I /we help you?

I am lupus /SLE sufferer with lung issues and macular and cataracts.

Alot of us here have multiple issue but our main focus is SLE. and the medication that we are on and how we cope with our day to day life with it with our illness

Btw the way I am a retired nurse (retired early due to ill health)

Feel free to explain more will see how we can all help you. Hopefully the rest will introduce themselves.

[Chris21]

Hi Provence, have you managed to get your sore fingers sorted? I too felt ‘lost’ when first diagnosed, had never heard of lupus and a lot of the associated auto diseases. Joining lupus uk and other organisations I found out lots! You’re right in that we can feel abandoned by the nhs. To the consultants we are one of a zillion, they do their best in treating the problem but don’t always have the answer. It took me ages to find out which eye drops and various lotions that would help my problems, the nhs give out what’s on the list that they are allowed to prescribe but sometimes they don’t work, for instance the eye drops I was given hurt my eyes, I then discovered on this forum that non preservative ones are the best! Recently reading on here, ( 6 yrs after being diagnosed) that people are getting sun cream on prescription! I’ve never been told that by nhs 😁 Nhs do their best but at the end of the day, we do have to keep looking to see how we can help ourselves. This people on this group is by far the best with knowledge. Hope your day today is better than yesterday. 😊

[Cwmtaf]

Hello,

Please know that you are not alone. I hope you will find that this community will help you feel less alone and that in time you will feel supported and able to share your experiences. The community are hugely knowledgeable, mostly through lived experience and are always willing to share with others.

Lupus UK is also a good source of information and support. Their 'contacts' are people you can ring to talk through what you are going through.

I hope today will be a better day for you.

[provence2022 in reply to Cwmtaf]

Many thanks to you AND all the others who have responded to my wails of distress……hoping that there is sunlight in the future! After 5 load months need some respite !!

[chrisj]

Are you talking about a leaflet or booklet guide?? I was given one when diagnosed in 2005 that I found most useful and if you are able there is lots of information on the web plus advice from the various doctors I've seen. I've dealt with alone as well...

[Cwmtaf in reply to chrisj]

If you join Lupus UK you get magazines packed full of information including latest research, news from groups around the regions along with lists of useful organisations. You will also find details of telephone 'contacts' around the UK who are there to listen to you, support you and signpost you to where you might find further information. As far as I am aware most of these contact have Lupus so you will be talking to someone has empathy for your situation.Wishing you a good day today.

[provence2022 in reply to Cwmtaf]

Many thanks, have joined Lupus ….. still waiting for some relief….particularly for sore & painful fingertips!! Any ideas? Wear gloves etc …