Just wanted to let you all know that there is hope.
In 2010 I was diagnosed with Lupus after many years of chronic fatigue, aches and pains, but now I am in remission and I've stopped all medication! The meds didn't agree with me anyway, so I was forced to try an alternative approach. I use acupuncture, diet, mindfulness and natural herbal medicine to treat my symptoms and I have had success. To be clear, I never had any organ involvement (just joints, nerves, muscles and tendons) and I had full support from my GP and Rheumatologist when weaning off my drugs. Initially I tried Hydroxy but just made me feel terribly nervous (like waking up with exam nerves every morning) and since I'd had a history of anxiety and depression I stopped taking it. Then I tried steroids, which I had a terrible reaction too (I became suicidal), so I was left with Naproxen, 500mg twice a day, but suffered side effects such as dizziness and bladder discomfort, so my consultant supported me in coming off those gradually. Now I take no Naproxen, and a year since I stopped taking it and used a natural approach instead, my ESR is the lowest it's ever been!
You will need support if making drastic changes to your diet, or thinking of making lifestyle changes. I found it difficult but now I've found a happy balance. I found that joining a buddhist centre and attending regular mindfulness meditation sessions really helped. I went gluten free 18 months ago, I avoid sugar and limit dairy. I make my own gluten free cakes with coconut sugar or honey. I use anti-inflammatory herbs teas (medicinal camomile, calendula and yarrow) and make ginger and manuka honey cordial. I still eat meat and seem better when I avoid eating too many carbs (grain based). I am better in winter than summer, as the UV does definitely have a negative effect on me and I can't do as much. I feel so much better in myself, more in control (rather than lupus being in control!) and I have more energy than I've had in years! I even talked to my consultant about the concept of 'recovery' and he admitted that he had seen people recover from Lupus.
If you want any info about any of this, I'll do my best to help you. In the mean time, here is an interesting TEDtalk to watch "How to make stress your friend" (trust me, it's very interesting!) ted.com/talks/kelly_mcgonig...
Hang in there fellow Lupies xx
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Maya23
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Hi Dryad, thank you for your post. So happy that you are in remission as I have read your posts with interest. I will take a look at the information you have given above. Even at the moment I cannot even try to cut down on the placquenil as it is too painful let alone the methotrexate. I would not do either without GP/Rheumatologist guidance though as I have been warned it would send me into a big flare up. What your post does is give us hope an some ways forward to try and that is so helpful. All the best to you and long may you stay in remission xx
I've just listened to your Ted talk and found it so interesting! Amazing how we can view stress so differently to help our health. I'm pleased you've done so well coming off those drugs, what side effects you had! Hope it continues for you. I have come off immunosuppressive but I 'm not so well and need to take steroids. Trying to find the right dose at the moment so couldn't do as you have but I am watching my diet, cutting down on sugar and learning mindfulness techniques to help me cope. I will watch the talk again thanks for sharing it and keep well. X
Routine of meditating ,diet and living in harmony however I am still very Ill and have Brian scan soon to what's happening to me neurologically .
I am not a pill popper but with out meds I would be useless . I have been Buddhist for 20 years had symptoms since childhood and degenerating fast .
I am glad it works for you and may you live in harmony and peace and be pain free .
Sincere wishes
JJ Kane
Wow dyed I'm pleased for you,your positive outlook has always made me feel their is hope . Let's prey you have many years of lupus free symptoms fingers x.
I am curious to know if you still get mild or moderate pain as I too have had very low esr levels for a few months now and I too don t take any meds as my lupus has not effected my organs.
But I do have general aches and pains in joints and muscles (well sometimes it feels everywhere) I don't get headaches anymore and I haven't had rash for a long time but I have just had really nasty achy thighs and knees lately .
So what I'm asking is when your in
remission does that mean no symptoms at all or very mild symptoms it's all so confusing as I'm having quite a debate with my GP about this at the moment. Xxxxx
That's very interesting that you are also in remission, that's great! I too still have some symptoms here and there (even with an ESR of only 8!); mostly a bit of joint pain, some burning pains in my arms which comes and goes, and some neurological pain like electro shocks (all usually worse at certain times of the month). BUT they are not as bad as they used to be, and the main difference is that I have so much more energy and I FEEL LIKE A NORMAL HUMAN BEING!! I can do all the things I want to do such as going out dancing in the evening and not feel terrible for the next few days. I'm still going to be very careful i.e. not take on too much stress, keep to my diet, avoid UV and prepare for slowing down during the summer months. The thing I found most debilitating about Lupus was the constant feeling of terrible fatigue and feeling like I was dragging myself around, needing to rest every afternoon, feeling flu-like, and constant nagging pains. With less pain and more energy I feel like my true self once again and I'm so happy
So in answer to your comments, I think that perhaps remission for me means very mild symptoms and much more energy. I feel no worse than my husband who doesn't have Lupus but who gets some aches and pains of his own. I feel like I'm back in control of my life instead of Lupus.
Do let me know what you think about this definition of remission .. I think it's an interesting debate!
I was diagnosed in February 2012 only two years ago but like most people I had symptoms going way back at least two years.
But all through my rheumy appointments at the beginning my esr was up and down like a yo yo my highest recording was 32 and my last was 12 before it's been as low as 6 but strangely I still suffer with a few aches and pains especially in my thighs which is properly because I like to be as active as I can.
I too look after myself with diet and moderate exercise and this spring I'm determined to get back on my push bike even though I can ache after it's so exhilarating to be able to feel normal.
I believe in self help and positive thinking because as we know lupus can be very hard on some people.
I still have to remind myself to pace it sometimes ,as I know I will hurt next day if I over do it.
I too went to a wedding last summer and did some dancing and next day felt pretty good, but then some days I hurt quite a lot but still have very low esr.
So in my personal opinion I believe I will always have some sort of pain or discomfort ,if I over do it then I can become very painful but if I keep fairly active have a good healthy diet keep weight down and mostly try and keep positive then I don't see why you can't have a normal life.
Now the fatigue is interesting because for me I can still feel sooooooo tired but most of the time I can now stay up later and I I I never sleep in the day only on some days I need to rest in afternoon, my family keep me going and support me in everything I do and I also don't worry half as much as I used to ,for me at the beginning I was living in constant fear of it getting worse and was afraid of lupus but now I don't fear it I deal with it.
Dyed I really hope you stay well I remember your blogs when you was on steroids and I know how low you have been.
I need to add that I'm trying not to perpetuate an idea that it's somehow 'wrong' to take meds, it's extremely important that lupus patients do take them as lupus can be so serious. I'm just trying to offer my experience to others so that they know there are other treatment models out there. Some people are put on drugs and don't need to be. Some people need drugs to save their quality of life, or even to stay alive.
Thank you for all your supportive comments, I hope you all find a way to live with lupus that is relatively harmonious for you. xx
Sorry dyed just one more question does your bloods still come back positive of lupus or r they now completely normal mine still read positive Ana DNA so still need checking.
its lovely to hear from you! so pleased that your in remission its wonderful news! I will take a look at the info you've given. I long for a "normal me" day again. take care sending you a hug x
My consultant stopped testing my ANA when he was satisfied with a positive result over 2 years.. so I don't know if they have changed or not. It would be interesting to know!
It's a little film about an effective drug called LDN which I haven't tried yet, but a friend of mine with Lupus says it's really effective at controlling pain. She gets it from a private doctor. Have any of your tried it?
My friend also warns me of the side effects in the first 2 weeks: "the side effects were awful sleep and feeling very weird for about two weeks. Two friends of mine started it but gave up as they couldn't bare it. But i think its'worth it as that goes and you end up with less pain."
And here's my chocolate cake recipe (it's gluten free, and uses alternative sweeteners so contains no 'sugar') and it actually isn't really over the top on the chocolate but still tastes yummy and chocolatey.
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Hoping for help with very difficult to cut toenails.
No hope of getting this referral not sure what I can do!
24 Hour ECG Tape.. I hope it's comfortable enough to sleep!
