Continuous flare...

[purple-lou]

I have been in a continuous flare for weeks now. I am at the end of my tether.

I'm really struggling to cope.

The slightest activity leaves me with chronic fatigue and pain.

I have been taking placquenil and steroids. The steroids were terrible and I had to stop taking them.

I have awful pain in my head that is so bad that I can't move.

I don't know what to do. I'm so low and feel so sorry for my children.

Any ideas or advice would be greatly appreciated.

Louise xx

[Jojo387]

I know how you feel!

Please don't beat yourself up, you will at least improve, if not get better.but I know how hard it is to be unable to take part in life.

This time last year I was so ill I wished I were dead. The fatigue and the headaches,the sore throat and lymph nodes popping up all over, the joint pain, unable to eat but knowing i must somehow force something down, rashes, on and on it went,and none of the docs or specialists seemed to know why.Christmas day I was practically unable to move, I could barely get out of bed. I was completely destroyed.

I was checked for lymphoma, lupus, EBV, Monospot, allergies, Dermatological diseases, breast cancer, tropical diseases, and other stuff I can't remember the names of. I am still undiagnosed, still under investigation, the current thinking is maybe Stills disease, maybe lupus, ( and nobody has actually ruled out a rare form of lymphoma completely either, just on the 'watch and wait' approach)

All I can really tell you is that I have got better, I don't know how, or why I was so sick, and I'm nowhere near 100% better, but I'm back at work,( was off for 4 months) living my life, and praying that whatever I have does not ever strike so fiercely again. It's not easy, I still get exhausted if I don't pace myself, or try and do too much.

Jo x

[artemis5]

Purple-lou. You cannot predict how long the flare up will last. My longest (before steroids) lasted 6 months and it was agonising. It went away on its own.

Next bad flare up was 7 months after my daughter's birth and the doctor suggested steroids then. I was always against steroids bacause of all the side effects they have but I had to take care of my daughter so I didn't reaally have a choice.

In cases of acute inflammation steroids are the best option I'm afraid becasue they act very fast... what kind of doses were you using that caused these side effects?

ALternatively you can try to wait it out, rest, relax, enjoy healthy diet ect. - but we all now that all that it is usually impossible, especially when you have children or full time job...

[Purpletop]

If you can't take steroids, next step is immunosuppressants, unfortunately. But at least you force it into remission. Plaquenil will take care of the fatigue and joint pain when it starts working and then gradually deal with the rest of inflammation in the body but until then you will need to kick this into submission. It is up to you whether you want to do this through diet and exercise and plaquenil only or go for the Big Bang approach. It is very frustrating, I agree, to have to choose between suffering now and improve later through careful lifestyle or improve now but manage side effects down the line through strong medication. I'm on the cusp at the moment, about to start immunosuppressants but just starting planning anti inflammatory diet and exercise. My goal is to stop inflammation before it affects the organs or scars tissue. If that means a big hammer now, then I suppose I'll have to go for it. But we are all different and have different pain thresholds and ability to cope. I would say find your goal first, both long term and short term and take it from there. And then hope that your poor body will help. I hope you'll get better soon.

[mstr]

Purple-Lou, so sorry for you as we all know how hard it is when flare up's last so long. It is so hard to explain to people how much they make different parts of the body ache. At the moment I too am in a flare up and even the insides of my fingers just seem to hurt and my neck too. I too am on the placquenil but am starting to wonder if this is enough. I agree with Purple-top about whether we just try to diet, exercise and make ourselves relax (where possible) or to go for the stronger meds. It's a difficult one and one I that I too fear I will have to make soon. I am trying to swim once or twice each week but must look into the diet aspect too. We use a lot of tinned tomatoes/passata when cooking and I have read that tomatoes can cause inflamation, so I may need to check this out.

Also when in a flare up steroid injections are great but they don't last for ever and unfortunately my mood seems to change with them from easy going to being completely unreasonable I hope Purple-Lou that your flare up eases very soon xx