(apart from rest!)...Has anyone got any tips for fatigue?...stuggling to cope with the relentlessness of it now! :(

[steadilymovingforward]

[Paul_Howard Partner LUPUS UK]

You might like to take a look at the article we did late last year that compiled some people's tips - lupusuk.healthunlocked.com/...

[steadilymovingforward in reply to Paul_Howard]

Thanks Paul

[steadilymovingforward in reply to steadilymovingforward]

I'll be honest I kinda observe all of those practices and still struggling, I was just hoping that someone might have had some kind of miracle cure that I hadn't heard of!...oh well, will keep trying!

[Paul_Howard Partner LUPUS UK in reply to steadilymovingforward]

How long have you had lupus? What treatment are you on at the moment?

[steadilymovingforward]

Probably 7 years but diagnosed in 2011. I take 400mg Hydroxychloroquine. Consultant @ St Thomas found I hadly pretty bad vit d deficiency at last visit so I'm 2 wks into a 6 mth supplement treatment Colecalciferol.

[Paul_Howard Partner LUPUS UK in reply to steadilymovingforward]

Fingers crossed that might help a bit over time.

[Jaxqueline in reply to steadilymovingforward]

I'm vit D deficient and take calcichew - think it has improved things. Good luck!

[steadilymovingforward]

..skin on shin area is horrendous too (6mths) so off to see the dermatologist soon...

[Jaxqueline in reply to steadilymovingforward]

Hi, I have dry/scaly skin on my shins too - didn't realise this was connected to lupus. Can you let me know what the dermo says please? Ta

[steadilymovingforward in reply to Jaxqueline]

Will do Jaxqueline x

[Acorn1]

Have you experimented with your diet? I tried the GAPS plan that almost rid me totally of fatigue. I'm on hydroxy and low dose prednisalone (2mg). The GAPS plan is quite time consuming at first but if you're at your wits end with the fatigue maybe give it a go.

Kind regards

Acorn

[steadilymovingforward in reply to Acorn1]

Thanks I will look into this!

[steadilymovingforward in reply to steadilymovingforward]

Had a quick look and the food looks like the kind of stuff I like eating anyway!...will read on some more later! :)...

[Busbynat]

What is the Gaps plan?

[Voutton]

Hi reading with interest Fatigue is so annoying I did elimination diet which showed me which foods caused me pain and stiffness so have adhered to this for many years now Not that I am pain free but def not so intense all the time I also find if I put on weight that also causes me more pain and tiredness Do you manage to do any exercise (I can hear you laugh ) but even a little extra a day helps I wonder if sometimes fatigue is linked to feeling down ? It is a vicious circle with Lupus Pacing is a big key part which after 30 yrs I still don't always manage I'm rambling on as usual,but yes I would like to know what this GAPS plan is .Hope you all ave a good day x

[steadilymovingforward in reply to Voutton]

Hi Voutton, I do a suprising amount of exercise actually and I'm sure you'll all be very surprised but I also have a part time job cleaning a big manor house from top to bottom for 4 solid hours once a week!...sometimes I feel like I'm dying when I'm doing it and literally have to crawl from room to room (my client goes out to do the weekly shop while I'm cleaning so he's not aware I struggle that much) but I know you have to force yourself when you are physicallyable to keep your strength up at least once a week as getting weak just makes it worse. Rest doesn't really work for me although I do have some. I do the cleaning job because I force myself to go as it's paid work...if it was the gym I might put it off if I was having a worse than usual day. It's getting harder and harder though, all my symptoms just seem to overlap now ! I don't suffer from any depression, I absolutely love life and it is without doubt Lupus that showed me how. I lost everything when I first fell ill so now I appreciate EVERYTHING...even pain...at least it's an experience rather than numbness which is worse ( I work in mental health) I'm not saying people who really suffer with the pain shouldn't complain, although I do suffer I don't think I have it as bad as some. However I do suffer more and more and I can't remember a gap (or 'remission') It's just hard to keep moving forward...but that is exactly all I expect from myself....just to try and take another step tomorrow and that is a worthy enough achievement in itself.

[Voutton]

Hi me again Just googled that diet Reading all info on the face of it It may work for some but not others I am aware of Leaky gut syndrome For me embarking on this would be far too overwhelming I'm gluten free Dont eat red meat or any processed foods make chicken broth all the time I am also lactose intolerant so feel that My diet is the best I can cope with. There were testimonies from people who found that the diet made them fatigued so like everything what works for one will not necessarily work for another Fortunately we are all different Hope that gives some help

[steadilymovingforward in reply to Voutton]

Yep, I think managing a complex diet will be tiring in itself...it's all about balance... I will look it up though x

[SarahHeney]

I had Vit D deficiency of <14. I had weekly doses of 10000 units. This has made a massive improvement to my levels of fatigue so I hope it does the same for you. Good luck x

[steadilymovingforward in reply to SarahHeney]

Thanks

[steadilymovingforward in reply to steadilymovingforward]

Sarah x

[Coppernob]

CoQ10. In high doses. And magnesium, also high doses. I grind to a halt, literally, without both of those. Plus a whole raft of other stuff, Plaquenil, diet, etc. But those two supplements are a great start. Get good quality, though, not H&B rubbish! Solgar, for instance, or BioCare. I actually get mine from ProHealth in the States - still cheaper than here, even with customs and shipping. Good luck,

[steadilymovingforward in reply to Coppernob]

thank you xx

[Nightjar]

Like Coppernob, I have taken Co-enzyme Q10 (plus some other supplements) for several years. Q10 has been a great help (I take 60mg /day ..100mg when good price). But THE turning point didn't come until starting homoeopathic treatment - which healed my Leaky Gut Syndrome. I have steadily got better, despite my many and varied symptoms. It took about 18 months of baby-steps to get to where I am today. I am generally better and hardly ever get fatigued. In the past, I could be fatigued for weeks on end - months even.

To have a healthy digestive system ('home' to most of our immune system) seems to be vital for general health. In the past, I could not eat wheat (bread, pasta), eggs.., without swelling up ('8 months pregnant' within 20 minutes!) and then feeling ill for up to 48 hours after.

When tested (food sensitivity test - private ..not NHS), it turned out it was the protein in wheat and eggs, that my body could not break down - so not gluten, as I had thought. My sensitivities include chemicals - so conventional medication is also out of the question.

After my Leaky Gut Syndrome had healed, I now enjoy a boiled egg every day (sometimes 2!) and I can eat bread again - though stick to one slice a day, as I have learnt that grain (bread, pasta, rice) as well as sugar and starchy foods (potatoes) can cause inflammation.

I had already cut out pasta and rice long before I started the homoeopathy - as I got terrible fatigue from eating those. I now have sweet potatoes (no starch) instead of potatoes and keep an eye on sugar intake (eek.. 'tis the hardest!). I have had to learn to like dark chocolate ..wasn't too hard.

I have noticed that after sugary foods (includes starchy foods), it doesn't take long before I am hungry again. When I do have sugar, it is always 'the real thing' - I do not touch anything that has aspartame, splenda, glucose syrup or other synthetic 'sugar' ..as brings on fatigue!

As my health continues to improve, I want to eat even better and am still 'at it' ..step by step, little by little. I'm not in a hurry. I started with breakfast (..well, brunch!). At first I really missed my porridge - but am now as happy with full fat yoghurt (with 1/2 grated apple, a soaked prune and seeds). Currently, it's all about being able to 'stomach' things ..excuse the pun! I'll stop now ..is easy to get carried away when feeling good.

All lupies are on different journeys ..our ongoing quest for health. Best of luck on your journey. xxx

[steadilymovingforward in reply to Nightjar]

Thank-you nightjar!xx

[steadilymovingforward in reply to Nightjar]

Ginko seems to be pretty good but I think I read that it can interact with other Lupus drugs?

[Hidden]

Cytoplan are good for all kinds of supplements a d are food based.

I have used their stuff for years. Online prompt delivery.

[steadilymovingforward]

Thank you guys xxx

[Voutton]

Hi just a question for nightjar read with interest your very informative experience I had to cut out porridge , but manage on the gluten free version Have you tried this ? Or does it contain something I should be aware of .i am lactose intolerate also which rules out yogurts and I love also cottage cheese Bah I'm lucky I love 100 % dark choc take care

[Nightjar in reply to Voutton]

Hi Voutton, As I say in my 'looong' message above, it was the protein not the gluten, I had a problem with (as had Leaky Gut Syndrome). I have had hardly any digestive problems after the homoeopathy. Recently, I have learnt that grain, starch and sugar contribute to inflammation - so decided to cut down (quite a lot!) on those and feel better for it. I haven't studied about lactose intolerance ..but did have a problem with dairy (including yoghurt) in the past. You'll have to trawl the internet for something about it. My sensitivity to dairy is gone, so very much enjoy my organic full fat (plain!) yoghurt. Btw, I would never go back to milk chocolate ..as is mainly sugar! Lucky us, you and me both, for managing dark chocs!

[Voutton]

Thanks nightjar I will trawl for the Protein content Can't understand the fact that your homeopath has worked for you (though I am pleased for you ) I have tried twice down that route but found it was very hit and miss plus it was costing a fortune Then I took arterial temporitis which results in blindness and just couldn't take the chance of not taking the steroids . I so believe in trying to help myself in as much as my food is very much monitored but will def check out this protein angle Thanks for that .Take care

[steadilymovingforward]

Eeek that's the third time I've fallen asleep (momentarily) at my desk...