suspected lupus. fibromyalgia

[Mandypandy1969]

I had my first rheumatologist appointment in April and was told suspected lupus. steroids for a month. second visit, steroid injection and put on hydroxy which made me worse. no rashes or joint aches. fatigue, muscles aches, heavy lead feeling when using arms and legs, forgetfulness, lack of concentration, can't take information in. headaches, bad mood swings. waiting for fibromyalgia meds after another visit to rheumy after stopping hydroxy and symptoms are with me more than ever. anyone had a similar situation or could I have both lupus and fibromyalgia? confused.

[whisperit]

hello Mandypandy,

I'm in a similar kind of confused situation - or maybe its my rheumy who is confused? I was first diagnosed with Undifferentiated Connective Tissue Disease and treated with hydroxy and prednisolone. That certainly seemed to settle my main problem of very inflamed lungs, and made my joints less painful. But since then, I have developed extreme fatigue. My bloods still show high ANA and my rheumy wants me to continue with the hydroxy and pred indefinitely. But he now says I have developed fibromyalgia.

I guess part of the problem is that we are talking about two systemic disorders with rather poorly defined and highly variable symptoms. Living with a lot of uncertainty seems to be our fate. Wish I had answers! x

[Mandypandy1969 in reply to whisperit]

I know. me too. I just want a bit of a break. been like this for 21 months. no let up, only the once when I was first given prednisolone for a month. no relief since then. hydroxy has made me worse. steroid injection was useless. 2nd month dose of steroids only lifted my mood. I am under a lot of stress asleep with e.s.a. being taken away. taking d.w.p. to tribunal. no way should I have been forced into jobseekers and be made to look for work in my condition. so fed up and angry. anger getting so much worse as I can't even enjoy a long walk anymore or drive too far due to fatigue. just want some sort of life.

[Chanpreet_Walia LUPUS UK]

Hi Mandypandy1969,

According to The Lupus Encyclopedia, “Fibromyalgia is a common problem, affecting approximately 4% of women and 1% of men. It is much more common in people who have had other stressful, painful disorders (such as SLE)”. Around 20% of people who have SLE also have fibromyalgia. The encyclopedia further states that people who have Fibromyalgia can experience symptoms such as trouble sleeping and extreme fatigue.

Fatigue is one of the most common symptoms of lupus; it affects around 90% of lupus patients. We published an article on our blog about 'managing fatigue' which contains helpful tips and information which you can read here lupusuk.org.uk/managing-fat...

A lack of concentration, difficulty in articulating thoughts and memory impairment are common symptoms that are associated with lupus; it is referred to as ‘brain fog’ or ‘lupus fog’ by people with lupus. Stress, anxiety and fatigue are a few examples of the causes of brain fog, you can find out more about this in our blog article ‘Coping with Brain Fog’: lupusuk.org.uk/coping-with-...

Stress is an important trigger of lupus, we published an article on our blog about stress management and relaxation which I hope you find useful: lupusuk.org.uk/stress-manag...

Sometimes, certain situations can be overwhelming which is why talking to someone can help relieve worries and anxiety that you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at [e-mail]

All the best, Chanpreet.

[Mandypandy1969 in reply to Chanpreet_Walia]

thankyou. I will take you up on that. I just want to know if I have both as hydroxy made me worse and since I was taking them I have been experiencing so many severe migraines. waiting on meds for fibro. not on hydroxy anymore as was advised to stop by rheumy nurse. saw rheumatologist last Wednesday and was told I had fibromyalgia. I didn't see the same rheumatologist but this one was his assistant I think. I can't remember what he said he was now. nothing new with me there lol. xx