Confused by my symptoms and their cause/s

I have recently been experiencing a raft of symptoms which have left me confused and hoping that others can shed some light on things. First, for the past 8 years, I have experienced a huge downturn come mid October, worsening to the end of December, then gradually improving with longer hours of daylight (I'm in Scotland); is this something some with Lupus experience? Second, dreadful and unusual upper back/neck/arm pain - rather like a trapped nerve combined with muscle pain, which I put down to a 'bad back' until it went overnight at which point my gut started playing up - appalling stabbing pain to the right of my stomach, along the edge of my ribcage and down; 'old plumbing' sounds from my bowel; not being able to eat; on/off nausea; a feeling of needing to pass wind but nothing happening, etc. I went to the doctor, who checked me over, said I probably had an irritated stomach (really?!) and told me to take a proton pump inhibitor. Afterwards I wondered if this isn't all connected with Lupus; I was only diagnosed in August (along with Hughes Syndrome) and am very much in the learning stages about the basics. Anyhow, I didn't take a PPI but first tried Peptac 90 minutes after eating - which seems to have helped. Can others relate to any of the above? Is this symptomatic of a flare? If so, should I be pushing to see the rhemy? Or am I likely looking at two separate things here? If so, could Plaquenil (which I am having real problems tolerating - have been taking 200mg every other day but building up from this is proving extremely difficult) be responsible for the gut issues? Any advice gratefully received!

6 Replies

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  • My daughter has SLE and before she was diagnosed she had terrible stomach cramps, feeling bloated and loss of appetite (as well as other lupie symptoms). Within 2 days of starting steroids the pains disappeared and her appetite returned, so the lupus was definitely affecting her stomach. Although doctors sometimes say the stomach is not affected by lupus there are too many people on this site who have lupus and have or do suffer from stomach related symptoms. I hope you start to feel better soon. Good luck :)

  • I recognise the mid October downturn and improvement with lengthening days, and the muscle pains and the digestive problems, so you are not alone! I've not gone further with medication than Plaquenil though, but I have made a lot of changes to my diet and I take Vitamin D. I have been surprised at how much I've improved, but of course it's not a quick fix and everyone is different. I hope you feel better soon, and we're here if you need us!

  • Thank you both so much for your replies. I really don't know how I'd cope mentally without this online community! It's interesting to hear that many people with Lupus do have stomach issues; I've had problems for years. PeaJay, I'm interested to learn that you recognise the autumnal downturn and can I ask what changes you have made to your diet?

  • Hi me too , i have alot of mucle pain from head to toe but especialy my neck arms back n thighs n calfs too,.. i was diagnosed with fybriomialga and was put on mucle relaxers along with all my lupus meds, which help but i am still in a lot of pain most dayz,but not just as bad, i hav also major stummache probs, nausia,vomiting, constant bloating excessive wind.constipation , had the camera down my throat nothing showed up so to go back for more tests, as iam now loosing weight, but is so frustraighting, so keep going to drs, till you get answers , lupus does affect the gut as far as iam aware. wish you well my friend..

  • ps making changes to diet has helped, i cut out bread ,milk pasta, all white, coffee .I now only eat brown bread brown rice ect it has made a differaance but there still is symptoms daily but again not as bad as it was,,,

  • Hi mojo; thanks for your mails and good wishes. Your symptoms sound pretty horrible and I really hope you find something to help relieve at least some of them.

    In terms of diet, I cut out dairy a few years back and it helped a lot - I was in constant agony up until then - and all gluten a couple of years back which seems to have helped a bit (and is, apparently, recommended by some drs for Hughes Syndrome, which I also have). If it's of any help to you, I buy my gluten free bread at Asda - which does its own brand (clear film, plus purple box with white text packaging), at a much cheaper price than others I have come across. It also tastes like bread and has a bread-like texture; always a bonus! Really good wishes.

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