Hi everyone I was diagnosed with lupus 3 years ago, but for the last year I've been suffering with really painful knees and thighs, lately this has been really getting me down today I'm very tearful as once again I'm back on the couch resting them.
I know this sounds weird but I'm always looking for another explanation to my pain like it's hurting because I walked too far or the knees ache because I went up and down the stairs too many times. im very afraid of this desease and of what it can do to your body I detest taking pills daily I get very low in mood when pain is bad and I feel that there is no one to turn to.
My rheumy has put me on prednisone now but have been on them for 6 weeks daily 5mg which is a low dose but he won't increase it as I don't cope well with it.i also take hydroxy 200mg which don't seem to be working but he wants me to keep taking it.
My bloods were up but on last appointment were improved. So I asked my rheumy if my bloods have improved then why am I still struggling with the pain, and he couldn't give me an answer so that's when I start doubting my diagnosis and start worrying no one is going to help me . However in the meantime I'm still here in pain and still sitting on the couch crying and my next appointment is in March (not good). To say I'm frustrated is an understatement.
I'm due to go shopping with my teenage daughter on Saturday for her presents and I sooooo don't want to let her down because it's going to be very hard for me to walk around and it's days like this that my lupus controls me not the other way round.
That is how I suffer too. My legs kill me especially my muscles. I am changing from azathioprine to mycophenolate on December as we don't think my body is absorbing the azathioprine. I have days where no pain and then days where I wonder how I am gonna walk the dog. I had a depo shot in bum a few weeks ago that gave me some relief. If u are suffering that badly call your rheumatology nurse or see if you can get an earlier appointment. What pain relief do you take? My doctor just put me on Tramadol. Hope you feel better for your shopping trip on Saturday. Spend today resting.
Thankyou for your reply and sorry you too suffer with painful muscles in legs as I too have a dog and love walking her everyday but like you I too wonder how I'm gonna walk round field some days it's such an effect which saddens me greatly, as I get such pleasure in getting out as I now have to work from home which helps pay the bills but can be lonely so getting out for me is so important.
I can put up with any pain else where on my body but when it's my legs I feel so frustrated as I miss being mobile.
I do feel better today but my muscles are delicate so I don't want to push them to there limit so more resting is needed. It like a visious circle.
I suffer with bad ibs symptoms when I take pills so doctors are very reluctant to give me any strong painkillers or powerful drugs but I know I can't go on like this forever so they will have to try something soon.
Ooh I feel your despair, I too have those so aching thighs and feet...and often dread my dog walk, but have to do it...my 2 dogs are my life..as kids grown up, and husband works long hours..so I can feel so lonely and trapped with this shitty disease, my lymphocytes are only 0.6 at moment, and I am so tearful and anxious....I am getting annoyed with myself! Lupus is cruell...I also fet the ibs prbl3ms and some days its just not funny!!
Oh I soooo understand luppykate it's sooo hard my dog is my life too and no matter how much pain I'm in I will walk her it gets me out as I work from home and don't see many people now in the week.
Being tearful sucks but sometimes it's necessary to let out emotion as strange as it sounds I feel better for it. Thank good for this site to vent on.
Hi so sorry for your pain. I understand how horrible that is. I am back at the gym lifting very light weights and doing some light aerobics. Believe it or not, that has help with leg pain and knee pain. Technically, one would think that exercise would increase the pain and sometimes initially it does, however, long range it helps me. I live in New York City in a 5th floor walk up--no elevator!! At one point my left leg esp was so painful I had trouble getting up the stair, went back to exercising and have no trouble with the stairs now. With doctor's guidance, exercise is good. Oh and I started yoga stretching class at the gym also.
I wish you less pain.
Loretta
Thankyou very much for your reply Loretta I can honesty say I do believe you are right about exercise I do try very hard to keep active and I walk my pet dog everyday even when in pain with muscles.
Sadly sometimes the pain is so bad I just have to rest but I will most defiantly take your advice and take up a gentle exercise class even if it's to just for a time make me feel normal.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Go home and have a baby !
Upset and Frustrated!!
Good news not so great...and I'm really angry.
Painful feet- SLE
Why me? Thoughts
