Looking for help please

[shellydreamer]

I'm looking for some help please. I have been referred to a rheumatologist but the waiting list is at least 6 months long. In the meantime my Othopedic surgeon says he cannot continue to treat me until I have a firm diagnosis as I need joint replacements. I have been poorly for about 2.5 years now. I suffer with terrible abdominal pain (have had scans that don't show anything), headaches, fatigue, skin rash on face, mouth ulcers, tendon problems and recently I am struggling with my memory and cognitive function. My latest blood results show very low white cell count as well as drops in other blood counts. My GP says she can't do any more than refer me (she thinks I have sjogrens syndrome too). In the meantime I am feeling more and more unwell. Does anyone have any advice as to what I can do please? 6 months is such a long wait and I am really worried as my chest pain is getting worse and so is my kidney pain. Thank you

[Dawn31019]

Hi Shelly I really sorry to hear your story , I ummed and Arrrh about reply as I’m very similar circumstances to yourself, I have waited 5.5 months and finally I thought light st the end of tunnel I got a call for a cancellation appointment with rheumatologist, unfortunately it’s only the beginning , the person I seen was very pompous and dismissive of my many, many symptoms which are all similar to what you explain with exception of the rash . I’m now waiting for MIR scans etc another 6 month plus wait , i literally feel your pain . I too have lupus family history and celiac disease . I’ve had speckled positive ANA bloods and lots of markers in blood work for months. I also have been diagnosed with fibromyalgia about 4 years ago so everything gets blamed and dismissed as that when I feel desperate there’s more going on . On the positive side I’m trying to look after my health as best I can through diet and exercise but it’s not enough. I hope you get sorted soon it’s a difficult journey but your not alone . Sorry can’t be of more help . Big hugs 🤗 Dawn

[shellydreamer in reply to Dawn31019]

Thank you Dawn. I have a feeling I’m going to have the same problem. I just can’t get my head around the fact that no-one seems to put all the symptoms together and realise they are connected. I’m going to try and use the info here to help my symptoms and make life a bit more bearable and keep my fingers crossed that when I do eventually see someone they can help me. I hope you are well and get the help you need x

[Tanitani]

Ask your primary to at least order ANA test so you know if you have an autoimmune disease or not.

[Feistylass]

Hi Shelley I’m so sorry to hear this. Waiting for appointments and a definitive diagnosis is tough. There is some general self care help tips on the LUPUS U.K. website and I would recommend trying to follow this . I have added the link to flares but there is much more too to get information from. Over the years I have learned that practicing mindfulness is beneficial for me to challenge my own thoughts and anxieties. Rest and exercise are equally important depending on how I am physically and mentally. Fresh air is key. Take one day at a time and above all, be kind to yourself.

lupus.org.uk/lupus-flares

[Poshcards]

Hi, please go feeling positive, I have been at Rheumatology centre in Bath for nearly 30 years now and they have always been there to help me, through thick and thin and my rhuemy cionsultant has rang me every three months throughout the covid period, so not all appointments are negative, just wanted to let you know this xx