Hi there! I'm not going to go into a whole history of ailments as I'm sure you've all heard it all before. However, there are a couple of things that I'd really like to understand a bit better and establish whether other lupus sufferers have the same.
The first is stomach pain. The pain I get is most frequently in the mornings but can sometimes last all day or come on later in the day. It's a very specific pain, not sharp but dull and inescapable and feels like my stomach is all knotted and cramped. When I breathe in and push my stomach out it feels like it loses some of the knottiness and eases a little after a while. Most mornings it eases once I am up on my feet but sometimes not. Can anyone else relate to this or is this unconnected to lupus?
Secondly, I'm keen to know whether lupus joint pain always presents with swollen joints or whether the joints can look normal but still be painful. This is the case with me and the Rheumatologist said my joints are all normal so I'm left feeling like it's all in my mind. (I can see the "all in my mind" theme is a common one with lupus!)
Any insight would be really gratefully received - thanks in advance!
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Lula76
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I can only tell you my experience. First, that feeling of a knotted stomach is exactly how I would describe my acute episodes of heartburn/gastritis. Left to itself, the sensation can become so intense and unpleasant that it is totally incapacitating. I don't think it is specifically linked to lupus/AI, but some of the meds can tend to provoke it or make it worse. Do you have any history of gastritis or the like? It may be that all you need is a PPI or similar stomach acid inhibitor.
My joint swelling has gone down a lot since getting treatment; it is probably only detectable as such by the most careful and experienced clinician. However, my joints are still sore and slightly stiff. But if it feels painful to you, that's kind of undeniable, isn't it!? Pain is ultimately a subjective symptom. Again, I don't think that's a lupus-specific thing, though. x
gastritis is basically an inflammation of the stomach lining, often due to excessive acid production. It can lead to feelings of heartburn, "acid stomach" and reflux, ultimately stomach ulcers etc. It is one of the potential side effects of hydroxy.
Welcome to the LUPUS UK community forum. I hope that you find this a helpful place for support and information.
We're not medically trained here so I can't advise you about what the cause of your stomach pain may be, although lupus (and its associated conditions) can cause a wide range of symptoms so could be responsible.
Regarding joint pain in lupus;
Doctors would usually diagnose arthritis in lupus if they find evidence of joint inflammation, such as swelling and decreased range of motion on physical examination. Joint x-rays are usually normal in lupus arthritis. Now many rheumatologists use ultrasound to help diagnose inflammation of the joints.
It is possible to have achy joints (arthralgias) without having actual inflammation of the joints (arthritis). Doctors would usually prescribe pain relievers for treatment in these cases.
For more information about pain management in lupus, you can read our blog article here - lupusuk.org.uk/pain-managem...
If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download at lupusuk.org.uk/request-info...
Hi, I'm still under investigation but on hydrochloroquine, there may be a possible gastro link, I've had IBS for many years, but when it's flaring I can literally feel something twisting up and swelling on my right side.
Before the lupus theory I thought it was unconnected but now I'm starting to wander, there's a lecture on in London this Saturday talking about the gastro/bowel link which I'm planning to attend, it may help with putting the puzzle together?
Lupus can effect the digestive system. Its one of those things that Doctors aren't really savvy to.
Please don't be alarmed by what I'm about to say as I have a rather nasty and aggressive form of SLE and with most people these things would be preventable.
I've had gastritis turn into atrophic gastritis as the SLE attacked the lining of the stomach which lead to a B12 defficiency. (Long story) I've had a dry bile duct that caused digestive havoc and malnutrition and weight loss. I've had SLE Hepatits. Along with some blood pressure problems that have effected digestion.
All long story's.
It might be worth you getting your digestive system checked out ?
Just to be on the safe side - SLE people shouldn't settle with the IBS label even if that's what is going on.
It might be helpful for you to google Gastrointestinal Manifestations of Lupus (SLE)
I just posted a response to Lula76 on the end of Wendy39 thread titled first appointment with NHS Rhuemy........ explaining how Lupus has effected my digestive system - if your interested.
I totally agree re joint pain. My Rheumy is the same and leaves me feeling I'm making it up. My joints ache without noticeable swelling and I've always thought that it's a characteristic of lupus that they don't swell!. It doesn't make it easy does it. Are you on any treatment for lupus?.
As to knotted stomach, I'm wondering if it's your IBS causing it. Pain can be severe . My mum has it and has been prescribed Mebeverine or buscopan which do help. Have you tried those?. Your GP can advise on them!.
Hi Misty - thanks so much for taking the time to respond. It's comforting to know that you've had a similar experience (though I am sorry that you have!). I am on hydroxichloroquine (sp?). My problem is that this is for discoid lupus but I have so many other symptoms that indicate there could be systemic involvement but no-one seems to take it seriously, saying that only 5% of discoid sufferers have a systemic form of lupus - so yes, I'm left feeling unsure and frustrated and a bit down that I'm being effectively told it's all in my head! I've just had a load of bloods done but previous bloods have not shown anything. Is this common? I feel like I have fought all I'm willing to fight and am now determined to just get on with it. What worries me is that if you don't know whether the symptoms are related and just ignore them, you could be ignoring something that is not related at all! It's all confusing and frustrating.
Anyway, I think the forum is great and with or without diagnosis as so many of the problems raised here are ones I have, it's a good source of info and support.
I t can be a long, hard road to diagnosis and I'm sorry your being left feeling frustrated and worried!. Sadly a very familiar story on forum and it is common for bloods to show things sometimes and then when repeated they don't!. Makes diagnosing these immune illnesses so hard!. Your Rheumy consultant shouldn't be making you feel it's all in your head as much as he is!. You could easily be the 5% who go onto develop the systemic version so no wonder your worried about having other symptoms!. I will just say Hydroxy is given for both versions so they're covering both. Good idea to keep a note of your symptoms so that at each appt you can say what's changed and what hasn't!. How long have you been taking it?. It can take up to three months to work!. It's a case of beingconsistent and battling with the medics at these appt's and eventually you will get there!. It's what I've had to do over the years!. Have you thought about changing Rheumy!. I wonder whether your Rheumy is like mine in that they think there being reassuring saying it's nothing or not happening but don't realise it comes across so differently!.
I'm having a flare after having the flu jab so don't feel too good thanks for asking. I hope my thoughts help and you have a good weekend. X
Hi - been taking it for 6 months and it is good to know its the universal treatment. I feel that it's better for me to leave it there and act if things get worse! Sorry to hear you're having a flare up and I hope you're able to rest and recuperate? Look after yourself and thanks again for your valuable insight x
Thanks for your reply. My illness started at 14 years of age too and like you couldn't walk properly because of the Arthrits!. How long after did it take for you to be diagnosed? I think 14 is an interesting age, lots of hormones raging and body changes!. I think also this is what characterises it though, not the outward signs like RA which is why they call it arthralgia!. Hope you have a good week. X
I must admit I'm some kind of knuckle dragging throwback as my hormones kicked in when I was 9. I think that's about the time I started to vomit for about a week around the time of my period. It essentially took 5 years to diagnose. And yes......one of the main reasons it took so long was no one would believe I was suffering from arthritis. And another diagnostic bonus - I've only ever had a really mild rash - just the rosy cheek look.
Over these years I was told it was 'growing pains' or delightful assumptions like 'you don't like school do you' or 'your very sullen' - (for good reason) etc. So they thought I was malingering.
One day I sat down at school and couldn't get up again from the pain. My teachers carried me into the local GPs and lay me down on the waiting room floor. My GP was bought out - but because there was no redness or swelling he wouldn't condescend to bend down to feel the heat coming off the joints. There was a huge yelling match from the teachers - and finally he was monstered into feeling it. He then 'literally' ran away - and another very frightened young GP came out to deal with it all.
These teachers had been watching me go dramatically down hill for about three years. I didn't have very assertive parents - so they probably saved my life.
A specialist was bought in - he felt heat coming off my kidneys - I was one month off renal failure. Thankfully I was sent to a female pioneering Renal Professor (early 1980s) who saved the kidneys.
Now I know if I have the slightest twinge in my little finger - I know I'm flaring and my internal organs might be in trouble. Doctors still guffaw at this - but its my pattern. I do have a full on strong ANA and anti - dsDNA - wot not - markers which 'sometimes' helps.
Gosh what a story. !. You poor thing going thru that at school!. It's interesting because I had my first period early and we always joked that I was too keen to be grown up as I was ahead of myself!. Little did I know then what was in store!. I was about five years after that to diagnosis too!. It's lovely that we can share experiences despite the illness symptoms being different sometimes for us. Thank goodness your kidneys were saved!. X
Its not one of my happiest memories. The Kidneys are still hanging in there.
Did you have a difficult time getting diagnosed ? I hope your symptoms weren't/aren't too bad ?
Its a bit weird isn't it. At 9 I was much taller than everybody else (with breasts). I wonder whether this is something connected to the DNA or the epigenetics (?) of developing Lupus.
It makes sense about hormones as they are the basis for these illnesses and us being so forward may well make it more likely to have an immune illness!. Maybe we have stumbled on something, would make intetesting research!. I'm sorry you had such an aggressive illness. I've been difficult to diagnose, still got label of UCTD after thirty years!. Been lucky with my kidneys but have had other organ problems and developed other auto- immune illnesses over the years!. Have you?. They say if you develop one your more likely to have others!. What treatment are you on?. I m on steroids and forever trying to reduce. Lovely chat thank you. X
I pretty much just have SLE and over time I was diagnosed with some of the usual side issues that go with it such as mild Sticky Blood (Hughes Syndrome or antiphospholipid syndrome) Lot of different names for that one. Lupus Patients with the full on version if untreated with blood thinners develop blood clots and are prone to all the freaky problems that go with it. I once watched a youtube thingi with Prof. Hughes describing the migraines that go with it- (had some whoppers as a teenager - by the end of four or five days of these things I was begging someone to shoot me. - I think (?) he described the blood as a kind of thick sludge ( a melodramatic way of putting it - probably not medically correct) But the blood sometimes doesn't circulate properly and causes - among other things - these migraines. Most of my young adult life I've lived with small daily headaches. These could have been the SLE itself though. I was only put on 100mg asprin a day - to thin the blood as mines mild.
I also have Raynaulds phenomena - this is where my toes go a delightful shade of red to blue to black. I haven't really studied up on this one much - its startling to look at - but thus far its been pretty harmless and painless. (no meds for this one). Amlodopine (a Blood pressure Med) I was on a little while can be used to treat this.
For a long time I thought I had Sjrogens - because for years I had parched eyes and mouth. Recently found out from a Lupus specialist that I don't have the antibodies for it and that the SLE antibodies can do the exact same thing. Being put on Micophenolate fixed the problem.
Whoooouh. Long list of medications. But its essentially now a maintenance dose of Prednisolone 5mg. and 2 x 360 mg of Myfortic (mycophenolate sodium) which is a form of Micophenolate thats easy on the digestive system
Other complementary drugs to control cholesterol - important for Lupus. Oesteoperosis medication - (I think I take this due to the Pred ? - not 100% sure. Getting a new fancy version soon - Denosumap injections - to replace the Alendronate i've been taking for eons. -if your on it for too long it actually causes Oesteoperosis. Bah.
Um. B12 injections. Small dose candersartan (BP) med to ease circulation pressure on fragile kidney capillaries.
Creon - digestive emzymes - due to some yet -not entirely properly explained digestion/absorption problems.
I don't think I'll bore you with the rest. I'm imagining your eyes glazing over.
Hope this helps ?
Azathiaprine is an older - steroid sparing drug that I was on for years. But I was taken off it due to a bit of an immune collapse.
Are you having trouble finding the right balance of Medication ?
X
ps. My computers a bit on the blink - There might be delays in answering.
Hi freckle, it's a lot to cope with and swallow pills for!. You've done well to bring steroids down to 5 mg, safe daily dose. I'm trying to get there, on 7 mg at the mo. The osteoporosis treatment is cos of the steroids and I was horrified too that the treatment after five years or so can bring it on!. Unreal really!. I too have Raynauds Phenomenon and have same colour changes!. I take Adalat and it doesn't bother me too much. Did yours predate other symptoms?. I was five when it started, another red flag as they say for immune illness!. I took Myco for quite a long time too and it was a helpful drug!. Glad it's been same for you. It's interesting comparing notes, you've had a lot to cope with without anymoreauto- immune illnesses!. X
Yeah, I don't actually remember any symptoms before I was 9. - really healthy all round before hand. Athletic even - climbing local mountains etc. Its actually hard to remember being in that body. It all just came on with a bang. Its been a bit of the same pattern in adulthood. Reasonably fine for periods (although with the Lupus fatigue and tiredness which is very different to the fatigue of healthy people - a totally different state) - then all of a sudden I'm in bed or staggering around fighting for my life. I've been told I have a fast acting - aggressive form of SLE as apposed to a slow simmer. I haven't really had to deal with a lot of chronic pain like others thankfully - at least one bonus.
There is a juvenile (pre - menstruation) onset form of SLE but from what I've observed its a really nasty and aggressive form of Lupus. Being Kids they may be vulnerable to not getting help in time which makes their outcomes worse.
Its interesting that you noticed these symptoms at an early age.
I hope your bones are still in good nick after these drug woes !
It's funny that we can have such different illnesses but share these similarities!. I too was very active before it struck I played tennis and it started after a cross country run at school. I thought I'd just damaged ligaments!. It's so hard imagining being that person as you rightly say, too long ago!. It is hard adjustingto such a different life once I'll when we've been sporty!. I think also kids illnesses are more virulent and strong hence the juvenile version being so aggressive!. I'm sorry you've had that version but sounds like you've had good periods in between and less pain!. I on the other hand haven't and suffer a lot with pain!. I doubted the diagnosis of lupus because I didn't get the good times. I agree though about the fatigue. Very disabling!.I must admit I do find these illnesses interesting, the way they are so different!. I do have mild osteoporosis thanks to the steroids which I've not been happy about!. Have just healed a broken foot, luckily just took the six weeks!. How about your bones?. Have you been able to do any work despite being so poorly?. X
I'm sorry you have to endure constant pain. Not good at all.
How did you break your foot ?
My bones were a little oesteoperotic (?) don't know whether that's a real word,. But the alendronate and weight baring exercise seemed to get them back to normal after a year of two. I'd say it was more the alendo that helped.
Must admit quite a few years ago I broke a few bones in an accident and I didn't have any trouble with them healing well. I get the impression I got lucky with the bone Oesto Doc's a little bit.
During my twenties and thirties I was able to work - sometimes full time - sometimes part time on and off and managed some University. Some of that Uni was a fine arts degree. I've had a pretty rotton balance -co-ordination disorder over the past 14 years - but now its getting a little better with better digestion ??? I'm hoping to try and re-start doing some painting. See if I can get a little income from it again. At this stage being self employed would probably be my only option. I'm lucky enough to have a secure roof over my head so I can go at my own pace.
I think you've done wonders with such difficult health problems to do a combination of working and uni!. It would be wonderful if you go back to painting, sounds very clever and like Twitchy!. It would be such an achievement and therapeutically enjoyable!. Interesting you've had problems with a balance condition linked to digestion!. Couldn't be easy to live with and you wouldn't put the two things together!. Glad it's improving!. As to me, I have never worked since leaving school, not well enough but have had a series of voluntary roles as and when health has allowed!.I've just gone back to my voluntary job now after a three year break and am enjoying it. It's great catching up with colleagues and feeling normal. I just go one morning a week for three hours . I have found my doctors are more willing to help knowing I do this!. Have you found this?. They like tries!. I broke my foot just walking, felt it snap, footballers injury!. LOL!. I think the bone strengthener prevented it being much worse as it was only the one bone!. I also have very high arches which hospital said also contributed as did the swelling of feet. I'm going to podiatry in a fortnightto have preventative advice. I'm scared it could happen again!. Hope you have a good weekend. 😊X
From my own experience - (I broke my bones all at once in a car accident - not due to osteoporosis) I wouldn't worry about having another break. Hope the foot isn't giving you much trouble.
I must admit - as time went on - work & studies went a little bit more part time. Had to defer for a year here and there from Uni.
I think you're right - If Doctors see you as working or contributing somehow - it does bring a bit more respect. Here there's a lot of wrong assumptions made about people on benefits. Lots of victim blaming. Mostly from right wing politicians and rich people.
I think I'll have a think about that one. As I know I had a 'professional' make some very wrong assumptions - in writing on my medical record !!!! - that I wasn't helping my family with my disabled brother. Nothing could be further from the truth. This particular person had picked up on some very stupid local gossip. It kind of falls into the petty small town issue. They observe me from a distance - not well for protracted periods - have no concept of what Lupus is - and make up this bewildering bovine poo.
Thanks for your reassurances re broken bones!. Foot is to be Xrayed next month to be sure it's healed. I feel it occasionally!. You must have had a long recovery after your car accident!. I had plans re work and life and have got my qualifications and added to them over the years!. We must be similar age!. I'm mid forties!. That's awful about a medic putting wrong things in your medical record!. I hope you got it changed because I know from experience that once it's there all doctors can be influenced by it!. I don't understand how a doctor would know from gossip!. I'm sorry you have had added stress and worry about your brother!.i saw a consultant once who wrote awful untruthsabout my condition and me as a patient ie imagining it etc!. Needlessto say I hot footed it out of his clinic never to return!. Luckily it wasn't local so I could escape and be seen at my local hospital!.Doctors often are so steadfastonce they build a picture of you and won't budge!. It can be so hard. I'm lucky now I've got three good local consultants I see regularlywho will work together when needed!. Do you live near a centre of excellence?. Hope you have a nicer Rheumy.So important with lupus. X
I'm 49....almost 50 ! bit of a shock. My life seems like a bit of a blur.
I think I have a good specialist for now. She's a Nephrologist. I get the impression that for Lupies with internal organ problems they seem to be a little more savy - at least for my type of Lupus. I travel to Melbourne which is about 370 odd km's away to see her. (not too bad by our standards) I believe its one of the top nephrology units in Australia. You turn up and you hear the receptionist planning appointments for people wanting to fly in from the other side of the country - sometimes urgently that very day.
When I first met her I was very unwell and had a sook about wanting to see a Lupus specialist - she said we're all Lupus specialists here. she's proven herself to be very Correct. Re: a quick diagnosis of digestive issues that had dragged on for more than two years.
She actually took one look at my medical record and said I should move away from the little town I'm living in to stop what she called discrimination. I've had a lot of delay's in treatment because of it.
For the short term I just have to figure out how to deal with local GPs until I can find a solution. Knowing whats on my medical record I cant say I'm terribly fond of any of them as a group. (not many locals here are really) Doctors in isolated rural towns become a law unto themselves. I have to see my old GP to tie up some routine loose ends - but I'm really not looking forward to it as he seemed to have overseen a lot of this muck - and despite the revelation that he got things seriously wrong with the recent gastro- stuff - he's still very invalidating and not listening. Like you say - they're VERY rigid and fixed in their thinking. Getting angrier as the appointment gets closer.
and - YES - Like yourself. A lot of the rubbish on my record falls into the 'hysterical woman' type syndrome. A lot of sexist rot that pretty much translate's as 'you're imaging it'
I get the impression that kind of stuff is a bit of a plague for women with immune conditions.
What does your team comprise of ?
I do have a semi regular Gastroenterologist that I'm not entirely sure of. He seems nice enough but I'm still sussing him out.
When is the big 50?. Hope you have a special celebration. I felt horrible suddenlybeing 45 so I do understand how you feel!. I won't like 50 either!. You'll have to tell me how you get on with it!. I didn't realise you live in Australia, explains attitude of doctors in a small place!. Your just coming out of winter?. I used to like watchingthe 'flying doctors on TV!. Wondered how true it was and also have always wondered what Xmas in the sun was like?. I'm glad you have a good nephrologist as your main consultant. I agree with you about them being more savvy re organ problems!. I think that part of the illness is easier to treat as they know what to do!. Other symptoms can be vaguer and also occur in lots of other conditions making it hard to distinguish!. I'm sure this is why we ladies can have problems with doctors and it is called the great mimic!. Sorry you have a long way to travel to see her but glad it's worth it as it sounds like a well known hospital. Whereabouts do you live. IBS type problems are very commonwith lupus and I developed similar symptoms but after tests was diagnosed with ulcerative colitis!. Do hope that hasn't happened to you!. It was such a shock!. So my team of specialists are a Rheumy,Gastro and pain doctor!. I hope you get to like the Gastro if you have to keep going!. We must feel confident in our specialists!. I'm sorry about your GP surgery and hope you can change it!. I think moving may be the only solution to be rid of the prejudice which is awful when you need to be close to family!. Good luck for when you go. Let me know how you get on. Not nice!. X
Glad your improving. I came out in sympathy with you as had sudden flare. Had steroids put up to 8 mg and I'm improving each day. I get the chest pain or pericarditis . Do you?. I'm celebrating getting my driving licence replacement thru after a 7 month wait!. Pleased I didn't have to go for an assessment as had to tell of medical conditions and car adaptation!. Feel so relieved!.How's the weather with you?. We're blowy and chilly here. Take care and keep improving. X
The weather is totally weird here. I live in Victoria and we used to have lovely Autumns and springs - (spring here) but for about 4 years now it just go's from freezing cold and wet to - blasting summer heat.
We're used of changeable weather here, but its now becoming a bit ridiculous. I was getting some blood tests today - in my summer clothes because it had suddenly become hot and sunny 'that hour' - and I met a hospital worker coming out into the weather in full winter garb - wooly hat and scarf - the lot. We had a chat on the way out because she was absolutely bewildered by the heat. But an hour later it was freezing again. One of my Dr's believes our nasty extended nasty mutating flu season we've had here is a 'global warming' phenomena. Not great for the immune - suppressed.
I'm sorry you've gone out in sympathy with me but very glad the 8mg of Pred is helping things improve. Yep. I had a touch of pericarditis in my younger days. But it was so mild I didn't notice it. My Rheumatologist did though - way back when the Dinosaurs walked the earth - about the 1990's. He was able to diagnose it by a careful listen to the chest.. Ah - for the good old days when they didn't send you to radiology in a futile search for microscopic immune activity.
I'm also very happy about your driving licence. It must be very frustrating having worry and fight for it. Independence is so important.
Unfortunately my problems are escalating a little at the moment. A combo of POT's and more possible Kidney problems and unresolved digestive stuff - so I'll have to sign off from this chat.
It was lovely to have a virtual talk with you.
When I come back to this site I'll keep a keen look out for your posts.
So sorry your health problems are getting worse. They're all so hard to cope with. I too have digestiveproblems so if you want to ask me anything please do. It sounds like your funny weather is global warming. Very hard to live with such volatile changes.I. I'm having problems with low potassium at the mo and feel yuck!. Good luck with your bloods and I hope your better soon. Have enjoyed our chats and hope you can pop up again soon. TAKE CAREX💐
Back in the bad old days (1980's) the things would get infected and cause a bit of damage and were banned. They would have to had advanced the technology of them for them to be re-introduced.
You might have to ask the GP whether you'd be more vulnerable to inflammation with it ? I would't have thunk though ?
The Female hormones don't agree with Lupus - so ask a lot of questions if your thinking about taking the pill to make sure your not getting more hormones than you would have naturally.
I had one GP go feminist and frothy at the mouth on me and say "You've got enough problems of your own - what about condoms"
I get abdominal pain now and again. I got it checked at the doctors once, as it got so painful for a few days in a row. They did physical exam, temp etc. Sent me on my way. I've always suffered IBS type symptoms. I think the meds do aggravate it. I take mine with food or a small glass of milk to try to reduce it all.
As for joints. I have osteoarthritis in my knees, hips (surgery in 2013) and back. So I think this has confused things further. But I am sure I get lupus aches and pains too. I also get tendinitis in my wrists and ankles. But never swollen joints. So, like you I get very frustrated by the fact that they are only interested in swollen joints.
When I had a bad flare and before medication I had pain in my hands, wrists, angles, feet, knees - seemed to be joint/ligament/muscle pain. I was only visibly swollen on two joints on my left hand. So yeah, as far as I understand Lupus joint pain isn't the same as arthritis.
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Anything I can do at home to lessen severity of possible lupus? 
Stomach issues
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