I'm new to this......

[chocolate_girl73]

Hi, I'm new to this. I was diagnosed with discoid lupus erythematosus just over 10 years ago. I've been backwards and forwards to the dermatologist and rheumatologist as my flares are accompanied by extreme lethargy and serve joint pains, but no swelling. Does anyone else experience this? I'm worried the disease could progress to SLE. My latest flare is my worst yet. The pain in my joints is so bad that I can't sleep at night and the rash is on my face, neck, arms and legs, which is very unusual for me. I am under extreme stress at the moment, so I'm guessing this has caused the flare.

[miccika1]

It could be. Once you go to your rheumatologist they can so the blood tests to make the diagnosis. Maybe you just need new medication to control the flares. Hope whatever's is happening to you can can try not stressing out about things you can't control (Easy to say hard to do) but it's important to find a way to minimize stress as that never helps any disease...all the best

[chocolate_girl73 in reply to miccika1]

Family illness and bereavement has been the cause of my stress. I knew that I would flare at some point but I must admit this has one has really set me back. I feel like my body is just giving up on itself.

I went out today and within an hour I wanted to come home. Lots of stares and most likely comments. The rash is so sore I cannot cover it with make up, not that I think it would cover anyway. I also found out that I have cousins with lupus. I never knew this until yesterday.

[miccika1 in reply to chocolate_girl73]

I suggest to try finding a good behavioral phycologist. This is a hard time for you and going through the grieving process could be easier with someone's help. It made all the change to me when I found a good one that specialized is dealing with chronic illness issues. For you maybe a regular behavioral scientist could really be of use. Ultimately only time will be of use...

[Cas70]

I have Discoid Lupus and Sjogren’s and have just come out of the worse flare in two years. BUT I got together all my different pain remedies, skin lotions and rested - in a way gave into it, it stopped me stressing about it which does assist recovery. I have fears that mine will progress too, and my new Rheumatologist suggested to have annual blood tests to check. What do you take ? Are you on Hydroxychloroquine? It has helped me. My skin is awful !

Make an appointment to talk to someone. Best of luck.

[chocolate_girl73 in reply to Cas70]

I was offered it last year and refused. At that time I didn't feel that my flares were frequent or serious to warrant such a life changing medication. I know that extreme long term stress has caused this. This flare is now entering it's second week, the pain in my joints is so bad I cannot sleep at night even though I'm tired. My face is swollen and my knees look like bubble wrap. I normally exercise 6 times a week yet I'm struggling to get out of bed.

As you say, I need to see someone. Just to see what's really going on. Thanks fro replying. It's good to share with someone who understands.

[Frustrated2 in reply to chocolate_girl73]

Chocolate_girl73

I do not have lupus, but

I was just put on Hydroxy along with colchicine for my illness.(see precious posts)

My rheumatologist went over the side effects with me and said I agree even though this has side effects it’s lesser than the next category of medications. Wouldn’t it be nice if you just got to stop there and could control it and get you flares to not happen or lesser than now?

Just thought I would give you a different perspective.

Flares are tough on all of us and life stresses are always the worse cause you can’t see them coming or slow/stop them.

I’m really sorry you are in a rough time.

I hope you find comfort when you are on this forum.

Take care of you!!

[chocolate_girl73 in reply to Frustrated2]

At the time I made this decision my flares were less frequent and less severe. In fairness I hadn't looked at it from another angle, I just didn't want to "rely" on prescription medication.

I'm a little older and wiser now. I'll resume my healthy lifestyle, which I felt had a positive effect on my health. I've let this slip. I'll get help for my fragile state of mental health, stress is a known aggravator of the condition and take it from there.

Thank you for making me take a fresh look at my situation, it has given me the opportunity to review my lifestyle as a whole. Also lesson learned not to be dismissive when my health is at stake in a bid to avoid the stigma of prescription medication (as I have previously done with regard to antidepressants).

[Frustrated2 in reply to chocolate_girl73]

I agree with you about the relying on prescriptions. until my illness I was off them completely unless needed.

My Gp practices Functional Medicine and I was practicing that way and it was slowly working. I am still using that along with western medicine. We feel like my body is so tired and being attacked that I need to do whatever I can to get it to shut down.

I understand how you feel about your job, my eye sight went to split screen vision and I had 20% less blood flow in my left eye and became very light sensitive. I wear amber tinted polarized sunglasses in/outside. I have difficulty telling the difference with some numbers and letters.

I also have neuropathy in my cranial nerves.

I agree with the healthy lifestyle. I am gluten, sugar and dairy free (do have cheat days) I also take fish oil which helps as well with inflammation, I am unable to take Tumeric.

I’m glad you can see things from both sides and take it into consideration.

For me this forum has helped me see the good and bad that gets through the difficult times .

Take care of you!!

[Cas70 in reply to chocolate_girl73]

But your illness is life changing! Hydroxychloroquine was life changing - it gave me back a majority of that which I had lost. You don’t have to get any of the side effects, we are all different. I don’t know who scare mongers about this med. so long as you have blood tests and eye tests annually to monitor you should be fine. Why go on suffering? My husband became seriously ill, we lost our business and then I suddenly lost my beloved brother who had been such an angel. All this contributed to my illness and I am now a sole carer BUT we all have to Keep calm and CARRY ON! It’s life ! Fight back - give yourself a boost, after 6 weeks you should feel the benefit. Or carry on and ......

[chocolate_girl73 in reply to Cas70]

Wow, you've been through a lot! Yet you still shine through as a positive person in your reply.

My main concern with the medication was/is the affect it can have on the eyes. I am a photographer/videographer so my eyes are precious to me. I have already suffered a change in eye sight, relying on glasses for close work. The thought that this could be worse, it scared me.

That said, I will talk to a medical professional again to reassess where I am now. My rejection of the medication took place nearly two years ago and a lot can change in that time. I'm older now and have suffered a lot more stress, which I know can have a long term negative effect on my health and wellbeing. A fresh MOT will now be top of my to do list.

Thank you for giving me a gentle nudge in the right direction.

[Cas70 in reply to chocolate_girl73]

You are so welcome - have you joined a support group at all? I have ended up running one for Sjogren’s and it has benefitted me as much as other members. So many natural remedies are shared around. My family always used natural first. I notice the name you use, well, I cut sugar out of my diet a year ago (I do use sweetener in my tea) and I have improved greatly. More energy etc. My sister who studied Ayurvedic Medicine got me on Turmeric and a daily dose has so improved my joints I rarely need painkillers but rub Olbas Oil on offending area.

I am 70 and am so grateful this happened at this part if my life- if you want any more tips please contact me. Cas x

[chocolate_girl73 in reply to Cas70]

A year ago i lived a very healthy lifestyle. A whole lots of stress and this has been ruined, but I am going to start over again.

Last year I went vegan. It was an experiment to see whether it had a positive effect on my health. At first, I thought it did, but after 9 months I felt that my athletic performance, muscle tone and energy levels had dropped, so I quit.

Exercise is an important part of my life and my lupus has had a detrimental effect on that. So I want to focus on that. Finding the right diet and exercise combination that does't exacerbate the lupus. I take turmeric supplements but nothing else, so I need to look at that too.

I haven't joined a support group. Not yet. I'm hoping that this forum will help and I lead a very busy working life.

[Cas70 in reply to chocolate_girl73]

We all have to find our way thru this - very best of luck