Lupus and Fibromyalgia: I was diagnosed with Lupus... - LUPUS UK

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Lupus and Fibromyalgia

natzway
natzway

I was diagnosed with Lupus a year ago though prob had it for at least 10yrs, my nan also had SLe, Monday saw my consultant and he told me I also have Fribromyalgia, I'm only just getting my head round lupus and now this. I was wondering if anyone has had acupuncture to help with their illnesses?

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Hi, lupus and fibromyalgia do seem to go hand in hand ( I was diagnosed with fibro fairly recently and also tested positive for Lupus) I too want to try some alternative therapies as do not want to spend the rest of my life on a cocktail of drugs but fear I may do.

do you have any other health issues such as thyroid problems etc?

Good luck!

LucyKris

natzway
natzway in reply to LucyKris

My rheumy suspects I'm gluten intolerant, I'm always anaemic

And vit d always low he's retesting for thyroid I'm on hydroxy and its really helped but not so Keen about amitripyline long term.

It's the fatigue that really does my head in

Thanks LucyKris xx

Yes, I was getting accupuncture for very stiff and sore left shoulder and arm. It would get so bad I couldn't dress myself. Accupuncture works pretty good, big difference right away, but within 6 months I would be back again. I have not had it come back for a year now, since just about the time my Plaquenil kicked in. Knock on Wood!

Yes natzway, I have acupuncture, the traditional Chinese method. You would know within 5 treatments if it suited you.

Ive known it to work for some years now and have had treatments intermittently over time. I began 30 years ago when I had my first mis-diagnosis and it was the thing that gave me some energy and quality of life when everywhere else had no answers and I wanted to get back to work. He treated me for heat and inflammation until I moved away, a second acupuncturist who I'd met through work offered to treat me for pain relief when I was in a pickle, again heat and inflammation. I saw him for several years until he moved away, I know that the complexity of my symptoms meant I wasn't straightforward to treat.

I was 'ok' until I was had a two big traumas and my DX a year ago now. I knew it had really helped in the past and contacted my 2nd practitioner who recommended the lady I see now, and she is amazing, she disappears headaches and other pains, lifts my energy and will massage areas of pain too. I saw her weekly at first and now fortnightly, she says if I was in the east I would be treated daily, if I could manage financially I would see her daily! I always feel better after a treatment, sometimes she does a band-aid treatment and when I'm not struggling with obvious difficulties she can then treat me more deeply.

I have negotiated a discount as it isn't cheap, that said it's really valuable and now that I don't have much of a social life I allow this spending on myself as it makes a huge difference.

I also had 6 weeks worth on the NHS for an injury that wasn't healing, so just in the localised area, it gave temporary relief, and didn't work the way that the whole body approach does.

Have you been recommended someone? Good Luck Sebitha

Excuse my ignorance but what is the difference between lupus and fibro? I'm not diagnosed yet and wonder where I fit in?

a_Scot
a_Scot in reply to Angelcake

Fibromyalgia is a “wastebasket diagnosis” … en.wikipedia.org/wiki/Waste...

Under the NHS people with Lupus are first labelled as hypochondriacs, (cost £0),

then when the organic nature of their illness becomes too conspicuous they are labelled as having Fibromyalgia, and finally, if they don’t die beforehand, diagnosed with Lupus.

In reality they had Lupus from day #1, and have been given cheaper bogus diagnoses because the function of the NHS is to minimize the cost of illness to the state by any means necessary.

I too have both conditions and there is an overlap of symptoms. Sometimes I am not sure which is causing the problems. Acupuncture definitely helps as does exercise for the fibromyalgia although its the last thing you may feel like doing. I go to a physio class and it helps as you need to keep mobile as you can. I think you have to be open to trying different things. Diet made a big change to my symptoms too. I would say try the acupuncture but you need to give it a few sessions to see if it is right for you.

Thank you all for your help and advice I've booked an appointment

For acupuncture with someone who was recommended

To me, I've been reading on here for last few weeks it really makes a difference I was feeling so alone, my family have been so supportive but they don't completely understand, it's so gd to be able to relate to other people's posts

Thank you everyone! Xxx

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