Bloody Lupus!!!

Hi there, not sure if I have actually posted on here although I do actually read alot of it. I was diagnosed about 5 years ago with possible Lupus/MCTD after one positive ANA result and have never had another one since. I do however have the butterfly rash and have, a few months ago, had to give up work (I generally temp so that I can manage the fatigue) and claim ESA as I am SO very tired, have searing pain in my joints and particularly muscles and today I am so very dizzy that I only really feel safe by reclining on the sofa.

I have an appointment later on this month with the rheumatologists and I am wondering if he will keep me signed off because I really dont feel like i can cope with work at the moment and I am worrying about it.

Oh, in case you are wondering if it is my meds that are causing this, I ave been taking the same stuff for nearly 5 years hydrichloroquine, amitryptyline, ramipril, amlopidine, thyroxine, tramadol for the pain and I also take 1000mg of evening primrose oil because I am a lady "of a certain age".

My partner of 20years is very supportive and is not bothered whether I work or not, but I am, does that make any sense? I tend to forget things and the names of things too. Any insights, advice gratefully received.

4 Replies

  • Julia001....I am sorry that you are feeling bad. It can get very scary. I have had many days like that and feel alone even though my spouse and children support me. They don't see what's going on in the inside. I try to share how I feel every day so that they understand.... I have had the dizziness and brain fog since 2008. MRI showed nothing. I continued on, not knowing what to do. Finally came to lupus through a test two months ago. I am considered on the low end, and not on any medication. I am choosing to treat naturally through a nutritionist and starting to feel better. Lots to address though. One at a time. My dizziness is believed to be from a leaky gut. Losing nutrition, minerals through gut and not being absorbed into the body. I have been on digestive enzymes and just recently started Hydrochloric acid (HCL)supplements ( read somewhere low HCL possibly attributed to lupus). My dizziness had eased up. Amazing! My brain wasn't getting the right nutrition. The HCL is making me a little dizzy after taking, but I need because I can't breathe without strain because my stomach is pushing up my diaphragm because I think I am not digesting my food. Anyway.. there are many issues with lupus. As I said, one thing at a time. You might be feeling worse because of all the meds you are on finally taking a toll on your body. Lupus is you body not knowing the difference between a good cell and a bad cell and it attacks the good cells. Wonder what the body thinks of these drugs we take? Just a thought. You can ignore this message if it offends you. Just thought I would share my experience. Hope and pray for healing!

  • My husband supports my not working, but it bothers me too that I can't help with the bills...

  • Thanks Natura, the upside is that I am now an expert on "Pointless" and the cats LOVE me being here and all cuddle up to me :-)

  • Hi julia001, in 15 years I have only had 4 positive Ana's. Your symptoms are very lupus related, and you must tell rheumy everything, including work and brain fog. They should assess your physical symptoms, as well as your bloods. Maybe you resent giving up your job, as it will be another thing that illness has taken from you. The independence that comes with having an outside life, as well as your own money, is a big issue. It was for me anyway. You have every right to question your future with regards to a definate diagnosis. Drs need to know that our illness is not all about the meds. We have life changing decisions to make too.

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