Can anyone share their thoughts please?

[Ladyatlunch]

Good evening. I’m really struggling with pain at the moment. I have SLE and sjogren’s which were diagnosed about 10 years ago. I was initially on Hydroxy and Prednisolone. I was on the Prednisone for 2 years as I wasn’t suitable for Azathioprine. I am now also weaned off the Hydroxy about 18 months ago. At my last rhem appointment there was suggestion of connective tissue disease as I have extreme muscle pains. I was given Pregabalin 75mg in the morning and my evening dose is now 150mg. I am due back in 3 months for review. On Friday night just gone I felt as if I had the worse flu ever and was writhing in pain till 3am. I didn’t know where to put myself and just wanted an end to it all. What also concerns me is pain on the left side of my chest, shoulder and neck (this is not new and not cardiac). I have difficulty lifting my arms above my head, my left outer thigh is numb and I am so weak all I can do is fall into my bed after work. My mouth is also badly ulcerated. If anyone even brushes against me I recoil in pain. Sorry I just feel as if I’ve just posted a garbled disjointed message but I am just so sore and miserable. Any thoughts?

[AlliP]

That is an awful lot to cope with 😔. I don’t know enough about sjogrens to help! I believe it may be auto immune? Yes it is - Googled it ! . I have a disease of the central nervous system and doctors did suspect MD ! Been really ill for 2 years ! All that really helped me was acupuncture and a good quality CBD oil ! IRead you can use acupuncture for Sjorgens so something to consider. Really hope your feeling better soon X

[Ladyatlunch in reply to AlliP]

Yes the CBD oil is one of the few things that is effective but the ‘good’ form of it which we can’t discuss here. I will look into acupuncture as I have only tried this for stress in the past. Many thanks for your suggestions. Isabel x

[AlliP in reply to Ladyatlunch]

It is certainly worth a try Isabel - I had six sessions and helped a lot ! You have an awful lot to contend with - really hope you find something to help! I tried so many things , expensive supplements etc ! I couldn’t turn my head and had the pain in left breast which stopped me going out ! My body was frozen , dragging my legs etc , hurt to lift my arms and was very weak ! Became inactive due to pain , I’m a lot better now thankfully . The other supplement that helped me was L - Theanine it’s an amino acid , found in green tea , helped with relaxation , stress and concentration . X

[Gem58]

I have symptoms the same as you. I have bad days and better days. I don't take any drugs/painkillers as I have intolerance to them so I use diet and exercise to help me.

I saw a physiotherapist for my shoulder/neck pain which helped. I've just joined a Pilates class for older people which is helpful. I also do Tai chi which I would recommend.

I hate feeling tired and in pain but it is what it is. I endeavour to stay positive and try anything to help.

Sorry you had a bad time and felt like it was the worse flu ever. All I can do at times like that is to give in and do nothing else but deal the best way I can.....it passes.

Make it a mission to do nice things for yourself. I nice massage now and again is sooo good.

A long soak in the bath with Epsom salts is a must.

Hope your feeling less sore soon.

[Ladyatlunch in reply to Gem58]

Thank you for your suggestions. This is the issue with me when I am well I am able to do yoga and light exercise. When I’m not I am only able to get to work then back to bed again. At the moment I will stick with mindfulness and whatever else I can manage. Thanks again. Isabel x