Living with lupus

[loulou74]

I am just soo fed up with it all at the moment. Am in a constant flare since diagnosis last year (although have CFS history for over 20 years), and every time I think I have the balance right...bang! It's down hill again!!! Also have overlap inflammatory arthritis. The sun having recently shown itself has made things even worse as it would appear I have become photosensitive!!! FED UP!!!

[misty14]

Hi Loulou74

I can so relate to what your saying as my health is in volatile mode too . It is such a difficult illness to deal with and can be so disheartening!. As your flaring what treatment are you on? Do you take steroids? Can your doses be changed to help?. Your treatment might need to be changed as you've been flaring a long time!. Have you seen your Consultant?. If not could you try to go earlier via your GP or a cancellation?. Your not alone with this on this forum and I hope you improve soon.X

[Whathappned]

Hi Loulou74

I'm sorry to hear your having a rough time at the minute. I am just repeating Misty14. Are you seeing your consultant, maybe your meds need reassessing again. I'm afraid I have very little knowledge on Lupus as its quite new for me, but I have had to fight the depression a lot longer. I found cognitive therapy quite helpful and I try to keep using it although it fails me at times. I find I notice my mood changes can be an indicator of a flare. I have found my husband wondering if I should up my anti depression med but I know it's the connective tissue stuff that's at the bottom of the problem and usually even if not a flare something new appears or reappears to bother me.

You have a right to feel like you do. We are here for you

[MrsMouseSJ]

Hi loulou. I so feel for you; your experience seems very similar to my own. I was originally diagnosed with CFS/ME, then last year told Lupus and secondary Hughes Syndrome. Since then, everything seems to be up in the air symptom-wise, with new symptoms appearing by the month, including newly acquired photosensitivity (I used to love sitting in the sun; really perked me up. Now, after 20 mins, I feel odd/sick, etc) Balance is an elusive thing. I'm fed up, too. Sorry, I wish I could say something really uplifting but it seems I can only say I'm feeling blurgh as well and hope that there is some comfort in numbers and that things start to improve for you soon.

[lol-lou]

Hiya, if you have lupus your skin will be more sensitive and you should stay out of the sun if poss and always wear factor 50 even in winter. I get my sunscreen on prescription from my dermatologist. I have a multitude of health issues including epilepsy and COPD and fibro/CFS. I can understand how fed up you must feel. I have had to alter my life completely since being diagnosed with lupus 8 years ago. I keep myself covered at all times and sunbathing is certainly out, besides it only ages your skin! Trying to get the balance right with all your health issues will be difficult but there are support groups you can always turn to for help, you can even phone if you can't face seeing any one. I have made many friends ( or fellow lupies as we call ourselves) from all over the world who have been a great help to me. Don't give up as there is help out there for you. Gentle hugs x