My symptoms ( just to name a few)

[Mandypandy1969]

I just wanted to ask a couple of questions. Do any of you with lupus have a big loss of appetite. Also yesterday, my three middle fingers stiffened up and got very painful. Taken naproxen and eased a bit but not full movement back yet. My arms really ache, along with my back and legs. Legs feel like lead weights when I climb steps. I can't hold my arms up for long enough to hang bed linen out as they ache and feel like lead weights. I get back ache very quickly if doing too much bending etc etc. I am so forgetful and absent minded and I cannot concentrate. I don't feel with it half the time. I am always tired even after a nights sleep and have no motivation or energy to do much. I could go on and on but don't want to bore you. I am due to see rheumatologist on Wednesday. My first appointment was in April and I was given prednisone for a month. 20mg and tapering 5mg each week then nothing. Felt like a new woman for about three weeks. Got down to 5mg and all the symptoms came back. I have been told I have suspected lupus and I have been driving mysel mad reading up on it. I am severely depressed and so can't wait for my appointment on Wednesday. I am a great worrier and my g.p. Thinks I am a bit neurotic. Put me on beta blockers and ametryptoline to keep me quiet u reckon. Took beta blockers for 3 weeks and they made me even more tired. Doc gave me ametryptoline as I was anxious again and said it would help with the aching muscles. Took one of these and I felt out of it. Took no more. So down and feel I am going mad.

[misty14]

Hi mandypandy

Sorry to read your struggling with lots of symptoms. Sounds like your in a flare after getting down to 5 mg on steroids!. Big achievement but we can pay for it big time sadly!. I can lose my appetite when feeling poorly. Any other symptoms like bowel problems which can occur with lupus?. Joint pain can be excruciating when in a flare too but glad naproxen is starting to help, shows its inflammation!.

Glad your seeing your Rheumy on weds. Might suggest going back up on the steroids perhaps for longer!. Hope he helps anyway, it's a tough illness to deal with. Keep us posted. X

[Mandypandy1969 in reply to misty14]

I have always suffered with a lot of wind and messy stools. I used to suffer with irritable bowel but that seemed to have gone after being on medication for a while. I have had stomach problems like I had salmonella when I went to Egypt which was a rare form due to the Nile air, not food. I got dysentery in India. it makes me wonder if past illnesses contribute to what's going on. in the past I have had glandular fever, chicken pox. inner ear infection. sorry for going on but I have got myself in a right 2 and 8 thinking about stuff. I am a worried and have been put on medication to calm my anxiety down/ shit me up!!. I hope I get to be put on steroids for a while as I felt like a new woman. no aches and full of life. I know I can't stay on them but my life this past few months has been awful with the aching and the lethargy. thank you for replying and I will keep you informed how I get on on Wednesday. x

[misty14 in reply to Mandypandy1969]

IBS is very common with lupus mandypandy and can flare up and then be better. Steroids are like a wonder treatment for joints and fatigue so I hope Rheumy sorts out a good treatment regime with them for you. Good luck for weds. Hope it goes well X

[Mandypandy1969 in reply to misty14]

I know. they were amazing. my discomfort is the muscle aches. I wouldn't say joints as such. I do have problems in the cold weather with some of my joints. the tiredness is awful. can't concentrate on stuff. not even been driving much because of the heaviness in my eyes. I am so forgetful and clumsy. I go off balance at times and get dizziness if I get up too quick. my appetite is awful. don't fancy much at all.

[misty14 in reply to Mandypandy1969]

Hi mandypandy

I so agree re the steroids helping the aches and fatigue!. I've just reduced mine to 7 mg a day and really noticing both those symptoms!. It's so hard trying to live as normal a life as possible being ill. It's also depressing having symptoms return after being so well on treatment!. Proves what's needed though. X

[Mandypandy1969 in reply to misty14]

I know. Can't believe I am back to bloody square one. Feeling worse than ever. Don't feel safe to drive far as feeling so tired. Lethargy is so bad and the aches all over. Xx

[Freckle1000]

Mandypandy !

SLE does effect the gastrointestinal system. I've just been through 2 years of hell and lost over 20 kilos (thankfully I 'was' very fat) The digestive system is one of the most underestimated parts of the body effected by Lupus.

I have a long standing SLE diagnosis and I got the 'hysterical woman' treatment too. Female with a gut problem - must be anxiety.....I got lots of sedatives thrown at me too.

Definitely get yourself a Gastroenterology referral - try to find one with an interest in Lupus who will look at your entire digestive system.

In the meantime, ask your chemist about taking Complex B vitamins and Iron. Lupus people suffer a lot from Iron deficiency for squillions of different reasons. (Warning: Iron tablets can make you nauseous and constipated)

If its safe to do so - (ask a Doctor) - up your steroids again until you have an answer.

My problem in part turned out to be POTs (Positional orthostatic tachycardia) / Mild nerve damage leading to blood pressure problems that caused my gut not work properly. Hence a big loss of appetite.

I'm definitely not saying this is what you have as you sound pretty fatigued. But loosing balance and dizziness when getting up can be POTs. It can be a Lupus thing.

With me - at first they thought it was gastroparesis - stomach not churning well enough to rid the gut of food. Had a delayed gastric emptying test. A bit on the slow side that day - but working.

Some years earlier It was thought my pancreas wasn't secreting enough digestive enzyme. (now they're having a second look at this theory) Back then I was producing too much poo and becoming malnourished.

I'm currently taking creon (digestive emzyme in a pill) to help me better absorb food and help things 'move' along a bit better. The stuffs been a life saver.

Keep persevering until you have an answer ! Some of these diagnosis' are tricky - but please don't let assumptions about your psychological state get in the way of a diagnosis.

That would be discrimination.