Good evening all. I've been a "silent" member shy of a year now & this forum has proven to be of a comfort to me mentally & emotionally.
I'm 35y/o & was diagnosed with SLE at the tender age of 13. I also have Raynards, thyroid & premature ovary faliure (which I'm still not coping with)
In 2001 I went on to diyalasis & in 2006 I had a live transplante thanks to my mother.
Since my transplant my health has been ok to what it was like prior to my transplant - these couple months I have been experiencing intense pain to my muscles, joints & lower back along with burning sensation to my finger tips, spasms in my feet & hands, extreme tiredness, & no energy to do the simpilict things (to be honest the list of my complaints feel endless & depressing!) Blood test are showing no sign of the SLE being active & this makes me feel confused as to what is up as I'm quite good at understanding my imperfect body & it's complaints. I'm feeling real low & wish it was possible to sleep my days away until this pain eases up! I am mentally, physically & emotionally drained.
Thanks for listening
Written by
Taurion
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Sorry to hear you are feeling so "low". I know how that is. It's a very frustrating disease because we can't just take one pill and have it fix everything. Every single day can be something different. I have also been experiencing a lot of these same symptoms that You mention. I'm questioning whether or not I may have Fibromyalgia because these are different than symptoms I see with my Lupus. I know all of that is of little comfort to you. Just know that you're not alone. Get lots of rest!! No matter what it is, allowing your mind and body to rest will help. Hugs to you!!😘
So sorry to read of your awful joint and muscle pain. One way to find out if it is Lupus or Fibromyalgia causing it is to either take an anti- inflammatory pill or have a short course of steroids. If this doesn't help then it could be Fibro which is treated with painkillers as it is not inflammation based. Hope that's helpful and you feel better soon. X
Hi misty14, thank you for your reply. I'm currently on a low dose of pred & I'm really apprehensive to increase them as it has taken me years to get to such a low dose. I take hydrox for the lupus & Co-dydromol daily & tramadol for my pain but it has been failing to hit the root of my pain. My doctor has prescribed me Neurontin 100mg 3x daily but they make feel "spaced out" so I have stopped taking them!
I feel at a lose at the moment where visiting my doc is concerned as I feel he is reluctant to treat me due to my list of complaints.
Thank you tho for the suggestions & I hope your health is as well as it can possibly be. xoxo
Hi I have SLE LUPUS as well.. The first time I was tested for it the test was positive the second test was negative then there was a third test done it came out positive for SLE so ask ur doctor to test u again.. I have muscle and joint pain every day all day long along with no energy nd I also be extremely tired nd I try to push myself to keep going... My doctor wanted to take me out of work but I refuse to do so... I'm not going to allow my lupus to win, I'm going to fight but I do understand ur pain... I wish u nothing but the best
Hi nadieboo, thank you for replying. I admire your
determination & strength to not let SLE over power you & your day to day life. Keep striving hun, & I hope your body soon adapts to your work routine. I too wish you all the best xoxo
Oh dear ur really feeling low and it a very common thing to be depressed when ur clearly suffering but ur blood test seems ok. It drains u. I ve d same feeling mine is that i get very upset after seeing some dr, i feel worse than i was before going into the office. I have to suggest to them some treatment i feel will help me. If u can get ur gp to refer u to a psychologist it might help u. I did it a couple of years ago it help me alot. Now i have limited myself to one task a day (going to church, shop, hospital). It helps me try and manage d pain. U ve every right to be depressed but do not give up hope bcos when their is life their is hope. So hold onto ur faith and keep hoping that 2mro will be a better day.God bless and i pray u get better soon.
Hi ijeasike, thank you so much. I believe this "feeling" will come to pass & when it does I take advantage of my "wellness". Many times I've visited my gp & cried my heart out & he/she have suggested that I seek some form of counciling but I feel it is no use (yes I am extremely stubborn!) better days are yet to come & I am patiently waiting. Thank you tho your post has uplifted my spirit. I hope you too soon feel better & that your dreaded pain eases real soon. Take care xoxo
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