Battle of the Will

SheBlake

Most days we meet daylight with the best intentions, today is going to be different. The problem isn't thinking of walking a mile or even jumping on the elliptical machine, it is just doing it. Living with Lupus has its own set of unique nuances. Depression and fatigue are just two of the most common that we live with, so what can we do to encourage one another? What works for you, so that you are able to get past those hurtles?

Spreyton22K

Hi there,

My name is Karen, I am 52 and been diagnosed with Lupus about 2 years ago. I also suffer with another illness called central sensitization after a fall in 1997, so I have lived with a lot of pain and disability since I was 35.

Lupus has thrown me in a spin......I had all the markers for it (including positive bloods) for over 3 years before the Doctors decided to act on it and it has left me in such a vulnerable space way behind the 8 ball as I continued to try to live according to the "rules" of the CS and that I now realize is contra-indicated when trying to 'live' with Lupus.

I have been using MFP since 2012?? and before joining my top weight was 268 lbs, I have gotten down to 110 lbs for which I am very glad as the extra stress on my small frame and joints was no fun.

I struggle, every, single day.

I never know what the day will bring and the Lupus has an awful mind of its own. Currently we are looking at another DMARD to add into an extremely complex line of medicines but I will have to wait till my application is granted on "compassionate" grounds as I am a thrice failed methotrexate user as well as azothioprine.

If anyone has any ideas.....please feel free to share. I am particularly affected by sunlight and my main exercise before used to be walking, bushwalking and mountain climbing (I am living in Tasmania), it was through this more rugged exercise that the lupus got picked up due to renal failure from over exertion. Now I have lost so much muscle mass and strength that I have osteoporosis and have suffered a broken back.

Thank you for taking the time to read this ramble.....
Karen

SheBlake

Karen,
My name is Sherice, and I live in Washington State (USA), and It is very nice to meet you. I was diagnosed with Lupus (SLE), and Raynaud's phenomenon 16 years ago, I currently take Cellcept, prednisone, and plaquinelle to maintain my symptoms, so I understand what you are going through. I am also affected by sunlight, and barometric pressure. Water aerobics are a great exercise, that I love, because there is literally no impact on the joints, so I love it.

Another exercise that I do is Pilates or Yoga depending on how I feel, and walking is great just to get moving. As far as your lower back, I really can empathize. Sometimes my back goes into full blown spasms, and that usually lays me out for a month, when it happens. I have sever arthritis in my lower back, and the doctors say it will only get progressively worse.

I have been trying to get approved for Benlysta, but even with insurance, it is still to expensive. The injections are once a month and it is supposed to be pretty incredible for those who suffer with Lupus. I hope the exercise that mentioned are helpful to you.