hello, im new to this site

hello, im new to this site

hi my name is jayne, im new to this site firstly is there anyone around the gloucestershire area with lupus because i have not met anyone near me with lupus. i have had lupus for 2 years and suffer mainly with tiredness joint pain ,and this constant coughing which drives me mad,i have been on food allergy diet which i find so helpful and the lupus seems to go but if i eat something i shouldnt then i get terrible pain the coughing starts and i get very tired is there anyone out there like this, i also have rhumatoid x

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  • Hi *waves* - my lupus was found due to chest troubles so I know all about that!

    I don't have a special diet, it sounds interesting!

    Welcome xxx

  • hi blueberry thanks for replying the allergy is called kinsiology and has helped with my lupus x

  • Nutrition / food intake can have profound effects on lupus. Being that each lupus patient is different, with different Rxs et al, each nutrition / food intake will differ as well.

    I have had fab success with a prescribed food intake; but once again it is an individual matter. Definitely something to investigate / research / review for your own benefit. If you can get a reference to a qualified Nutritionist (one who has worked with lupus / autoimmune disorder patients) it is totally worth the effort.

  • Hi

    I am new to the site too. Unfortunately I Iive in the South East so am not near you. I am having constant chest problems right now-taking prednisolone 40mg (have had lupus for 3 years). I didn't realise it was connected! I too am fed up with coughing/wheezing/fatigue. Your allergy diet sounds interesting. Welcome! x

  • hi loopy-loo i dont really know where to start but i know i have had lupus a long time but doctors wouldnt listen to me, it took a locum doctor to actually listen and send me to hospital, but about the allergy therapy this has has helped me such a lot it is called kinsiology which is muscle testing and they found i was intolerant to a lot of foods and if i stay off these foods the lupus is under control and i feel so well and full of energy so i know food has a big impact on my lupus, if i stay off dairy i dont cough and get all the mucus in my throat and if i dont eat any nightshade family foods ie potatoes,peppers,tomatetoes etc i dont get the pains in my legs i hope this helps anything else u would like to know just let me know thanks for replying xx

  • hello jayne,im new too but live in west yorkshire!! quite away from you,like you i knew i was ill but got told i wasnt x

  • Hi Jayne-Thank you for all you have said which is very interesting. I too went for allergy/intolerence testing before I got my lupus diagnosis I was at my wits end of what to try as at that stage was getting electric shock type pains throughout me and fatigue. I had the non invasive testing when you hold a rod and a circuit is made. On testing my results sound similar to yours. I was told to avoid the nightshade family, potatoes came out as very strong, marmite and MSG. I avoided these for a while and then gave up as I was still in so much pain. (Then I got my diagnosis). I think I will try to cut these foods out again. It is worth doing if you can feel well. Have you given up milk? That is a difficult one to do. I am also asthmatic but have had no problems for 3 years since being on prenisolone for lupus- until now. I have had a month of chest infections, antibiotics and back up to 40mgs of prednisolone-being slowly reduced. I just don't know why. Thank you again as what you said has made me think! xx

  • Always worth repeating ... weight bearing exercises are most important when going up/down/repeat on prednisone. I know it is a bother when in flare up (if not next to impossible - especially when thoracic problems co-exist) but bone density loss is very real and best avoided if possible. Swimming in a pool might feel great but it does nothing for bone density. Awareness is key. We walk the razor's edge. Best not to break bones whilst doing it.

    If you consider food fuel it can make it easier to 'let go' of favs. Mind over matter.

    Be well. On on on...

    Cheers.

  • Hi Ya,

    Im new too.. I have Lupus over 28 years..Im from the Netherlands, but Living now with my husband in Blackpool..I have rheumatisme..in my hands.Nice to meet you and welcome on the site.. Greetz Linda

    ps Im allergic for jackfruit (lyshees) and a lot of antibiotics!!

  • Hi Jayne,

    We do have a Western group which I'm sure has members in the Gloucestershire area. If you'd like I can send you contact details for the group?

  • thankyou that would be good xx

  • Hello Jayne, I live in Cirencester if you want a friendly ear to bend over Lupus I am still getting my head around it but I seem to be a bit on my own as not treated by the Rhuemy's in gloucestershire now as easier to get to the Great Western Hosp in Swindon.

    Katie

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