Went to Debenhams for a birthday treat from friend. But girl did not know what lupus was ( had to fill in some form) and was afraid to massage me just incase she triggered 'something' off! Another birthday treat from son. Thinking of NOT disclosing that I have lupus and getting full benefit of my massage on my torso and legs - not scalp cos that is where its at! Need all thoughts - no matter what. Diagnosed with discoid but my body is aching but that could be age... got a frozen shoulder and croydon taking long to phisio me.
Disclose lupus or not. Will Spa massage be a no no OR good.
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Jestina77
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They don't advise Spa's as the water vibration thingy is supposed 2 b bad 4 us (I 4get what it's called & in what way it's bad, I'm having a 'lupoid head' day lol!). Personally, I have always used them as I find them great 4 my circulation & have never had a problem, but then again, I don't always do what I'm supposed 2 do As 4 massages, it's not so much the massage itself, it's 2 do with the oils they use.
Thank you. Will google more on water vibration & lupus and lupus & oils. This is good. Thank you. Feel like l'm on an early easter egg hunt. Thanks for pointing me in the right direction.
Massage is definitely not a good idea for those with *systemic lupus* Jestina so I can understand why the masseur felt unable to work on you once you mentioned the L word. I don't know much about discoid other than having a recurring patch on one leg that drives me nuts with itchiness. I'd try to find out a lot more about discoid lupus before potentially making things worse!
My old rheumy recommended massage 4 me AND deep tissue massage 4 my MCT. (My GP regularly does deep tissue massage on my calf muscles as well as my back, neck etc as needed). I was always told as long as I am feeling ok & not in flare (which lets face it, if u're in flare u're hardly gonna really feel like having some1 manipulating u're muscle etc) and as long as u go 2 a therapist that knows what she's doing, u should b perfectly fine.
Just goes 2 show how medics can totally disagree on some things
I haven't got a firm diagnosis so don't yet know if Lupus is a component of my 'undifferentiated autoimmune disease'. Take Plaquenil, symptoms include joint pain, inflammation of tendons, facial rash, poor lung function, uveitis/mucus problems in the eye and, just recently, cold blue fingers (Raynauds??). I was treated by my daughter to a spa day yesterday as a birthday present and I haven't felt so well and relaxed in ages. We didn't have any massage treatments, just the saunas/steam rooms/jaccuzzi etc, but I've had massage in the past and have always felt fine afterwards. For me the relaxation seems to be really beneficial, but as everyone on this site will probable agree, we are all different and the symptoms are so complex, it's probably advisable to take advice from your doctor or rheumy just to be on the safe side. Good luck.
In my experience, massage can release a flood of toxins and make us feel ill. My partner 'treated' me to an aromatherapy massage a few years back, which was lovely at the time, but I then felt absolutely awful for a good two months afterwards. Treat with caution, I'd say. Shame, isn't it?
I had a very bad reaction to treatment/massage and it caused a Major Flare and was off work for 10 months. I was told after they should have Asked me what medical problems I had. I have Lupus SLE. When I went to America for a Holiday, on ALL the Spa's and hot tubs there are notices saying - DO NOT use if you had LUPUS. I was amazed but they know far more about Lupus over there and you could go to a chemist shop and they had full shelves marked FOR LUPUS.
The choice is yours you know your body better than we do. All you can do is what you have done, ask others and read up the info Sher has given you. Good luck.xx
I trained for 2yrs for a diploma in holistic therapies & since completing the course I have done 0 aromatherapy massages - some oils imitate hormones & for me my lupus is oestrogen sensitive so some oils are a no-no (clary sage, geranium... there are others but I have brain fog sorry.) I used to regularly go for a swedish or sports ('presport' warm & energise my body) & they really did help!
I always disclosed medical info, told them of any recent injuries/painful areas - and told them my rheumy, gp & physio when I had one - all reccomonded regular massage. Nowadays I cant afford to go & my body is crying out for that tlc as I am stiff & my everything hurts!
That was my experience of massage therapy. I know we are all affected differently, but thought Id share.
I try to have a massage at least once a month as it does me a world of good. I have neck and shoulder problems and a doc at the hospital recommend it. I have back problems and my physio has done massage on that since I was diagnosed at the she of 14 I'm now 38.
I would NOT use homeopathic and oils as they do cause flares. But just a basic plain oil is fine.
Spa/hot tubs is different to each person. The reason for not using them is the fast movement of the water can upset your muscles etc. Also if the water is to hot it can cause your body to over heat which can cause you to fit. I have access to a hot tub and when I am going to use it they add cold water to bring the temperature down which makes it ok for me. I use it as it is with just the normal bubbles not the extra massaging bubbles.
I had a lovely massage,but was very ill after with migraine for about four days ,as it increases the blood supply to the head(I am on warafin for APA)also felt very fatigued after it. Hope it works out for you x
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As 4 massages, it's not so much the massage itself, it's 2 do with the oils they use.
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