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At 62 my Lupus is 'no longer active' according to blood tests but I still suffer from profound and prolonged fatigue. It almost seems the fatigue is worse now but it could be I just dont have the energy to push through the lack of energy any more!
I have researched this and apparently Lupus can still effect you like this even if not active.
On Thursday morning I tried a session of Reflexology to see if it would help but since then have felt completely wiped out. I am half asleep all day and cant sleep at night. It normally takes me 3 - 4 days to recover from a day out but wasnt prepared for this after one hour's reflexology.
Wondered if reflexology has affected anyone else like this?
I have read so much about how it has helped Lupies and they feel revitalised after the first 24 hours and so am really dissappointed that I feel like I have climbed a mountain.
And of course I dont know whether this is just cos its the first session or whether it just wont help. So dont know whether to book any more sessions - cos right now I feel absolutely awful.
I would value any comments from anyone who has experienced similar effects or from any of you who may be reflexologists.
Please dont tell me if you felt great after your session - I am so happy for you but that wont help! :hehe: LOL
 

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HI Andi, I have been having reflexology for years and feel ok each time but I know the first session can be tough, a friend of mine who isn't a lupie suffered severly with tiredness and sore liver after her first (and only) reflexology session!! It was thought to be all the toxins being released... I must say her lifestyle probably includes alot of those!!:lol: Anyway there is such a thing as a gentle reflexology session rather than a more intensive one so perhaps you should request that in the future..I hope you feel better soon and don't let it put you off too much!
Claire X
 

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Hi Andi

Ive tried reflexology when I was first so poorly they didnt know what was wrong with me. They can tell by your feet which organs have been affected . So I found out before the drs DX me. Also years ago I had a session and the therapist asked me if I smoked? Never been a smoker so apparently it showed up years before I was ill. I Have Pulmonary Hypertention and ILD also(chest and lung damage) I wonder how your iron levels R they could be a cause of tiredness. Also if u r low on B12. I have injections every 3months seems to give me energy

Take care hope this helps
 

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Hi Andi,
Did the person doing the reflexology know you have autoimmune disease? And that they were NOT to stimulate the immune system connection? That could account for your reaction to it.
Sally
 

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Discussion Starter #5
Sally - this is the first time I have heard this. All I have ever read is that it is good for lupus. Could I ask you where you sourced this?

Thank you for your comment - that is actually what it feels like - that it has all been stirred up - and not in a good way!

My reflexologist knew I had lupus and knew about lupus although she said she had only actually treated one person who had skin involvement. Before I talk to her again I would like to research it more so I know what I am talking about a bit .

This is day 4 and I still feel like s**t. So tired I hardly have the energy to eat! And everything aches - bit like the flares I used to have but havent had for years.

Look forward to your reply and any other replies from anyone who can suggest where I could find out more about this specific aspect of reflexology.

Love Andi x
 

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Hi Andi,
Early on in my journey with lupus, I asked my (then-later fired) rheumatologist if massage therapy would be any good for the joints, symptoms of sle. He advised that some people got relief and felt better with it, but to make sure that the therapist knew to NOT stimulate the immune system points. OK.

A local massage therapy school was offering very reasonable cost for massage. [$15 per hour session] So, I went. The instructor made sure to advise the student of the points to not activate and those to do. She said that there are points all over the body which can help or hurt the systems, immune, limbic, and then to activate or calm down the various organs in the body. Think of acupuncture which works on these as well, but in a more direct point.
When I started going, I was in splints on both wrists as there was so much arthritis activity going that I could not tolerate any movement of these joints. Within a couple months, I was out of splints, have not had to go back to them.
I also had a TON of problems with my lungs from both lupus and asthma. With stimulating the healing of them, I would come home and cough up, literally, clods [2-3" of thick, nasty looking clods] of crud from my lungs. I could feel where they had come off of as I had almost painful sensations when I would breathe. My pulm doc told me that it was because the lungs had been covered over so long by this stuff that removal of it was definitely leaving the surface sensitive.
Within 6 months I was doing so much better all around, and was able to reduce my asthma meds as well. I was a LONG way from cured, just doing much better. At that point, I was taking any improvement I could get.

Zip to today, I get a massage every 2 weeks. I can feel that it helps to keep my joint pain down, my muscles are functioning much better, and despite a lot of problems, I am doing the best I have for 20 years.
The massage therapist I have been with for about 10 years says that she works on areas known to lower immune reactions, not what the avg person needs, but autoimmune diseases do. She did a TON of research about lupus before I saw her. She also works to keep the lymph systems draining and that helps to keep edema out of my legs. She said that with my health issues, she needs to do more of a "light" massage vs using a deep tissue massage which can trigger immune response to go active.

I have gone in with a migraine ha at times and with working extensively on draining fluid, relaxing blood vessels in the brain, she has been able to stop the migraine and keep it gone. I will say that with the deep work she has to do with that I have very sore muscles in my neck the next day. Even with that, it is worth it to have the migraine gone.

My advise would be to make sure that the massage therapist/refexology practitioner you see knows you have lupus. Understands that to activate your immune system will render you even more ill, and that she needs to stress those points which will calm down the immune response, not activate it. If she/he is not willing to do this, then by all means find another person.

I would suggest you contact the person who worked on you and ask her if she did stress immune healing, and if so, go back and have her work it down, not up. If she/he is not willing to do so, then you have seen the last of her/him.
Sally
 

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Thanks for that Sally.

I must say I find it very strange that in all my research (although maybe not that in depth) I found not one thing about reflexology possibly triggering a flare in autoimmune disease. Everywhere I looked it said that the results were always positive and made you feel relaxed if nothing else - so I did not worry about having the massage.

Praise the Lord that I am feeling a little better this morning but havent had a flare like that in years and dont want them to start up again.

I will certainly be having a good talk with the reflexologist and will be contacting others to get some more feedback on this before letting anyone near my feet again!!
 
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