Hi all, I was diagnosed with lupus and RA 12 months ago and recently I've been really unwell with stomach issues Dr's believed it was my gallbladder due to pain unable eat feeling bloated lost 10lb in 2 weeks. Had an ultrasound that's shown nothing but pain had pretty much gone by the time I'd got an appointment. All other symptoms have gone. Then the last 2 weeks had a very bad cold cough Inc temp ended up at the walkin centre on good Friday with severe pains left hand side collor bone and shoulder and then next day completely gone was given antibiotics due to high temp but told chest was clear. I'm really confused how you can feel so ill but they can't find anything wrong is this normal for lupus. I feel like an hypochondriac 😞does anyone else have strange things going on with no explanation?
Unexplained symptoms : Hi all, I was diagnosed with... - LUPUS UK
Unexplained symptoms
Yes Zeb i have things that come and go without reason or explanation.ive learnt over the years to read them so I can often tell what will pass.my general rule of thumb is to increase pain relief ,rest and ride it out for a few days then if it gets worse to contact my gp and we go from there whether its to hospital or contact my Rheumatologist..Best wishes SML xx
Thank you Spanielmadlady it's the disease that just keeps giving isn't it and likes to keep us on our toes or should i say in bed 🤣
It is and it's frightening at first.then you get to the 🙄 bit when you realise some manifestations are the Lupus having a little dig at you then you learn not to stress about them quite so much . if you are ever really worried or distressed get medical help
I read this with interest (see my post of yesterday), I also have pain left had side collarbone into neck which I attribute to existing RA. I feel feverish, have very bad pain in hips (RA?) and other new unusual symptoms. Dr google is terrifying me with links to stomach ulcers and pancreatitis ( heartburn, nausea, bloating, fatigue, headache, sore throat). No appointments of any sort at GP so will ride this out until it fades or worsens to the point of calling 111. With a bit of luck it will just disappear and be just another episode of unexplained illness that we tend to get, after all I often feel so ill I worry I have something terrible but the next day it’s gone. I sometimes wonder if I’m a raving hypercondriac but I do know that Stills can affect organs so I’m vigilant.Hope you stay well.
You may well of had a grumbling upset GB that had a stone that since self expelled before you had the scan possibly.? And you can get GB and liver problems that cause referred pain usually at the right shoulder. But if the GB or liver irritates the bottom of the diaphragm you may feel it toward the left collarbone....
Sadly scans and bloods really don't show the full picture of any illness, esp intermittent issues
Hugs
Lottie
Thanks Lottie, makes sense. Can I ask if you get colds chest infections etc how do you Dr's react. I went after 10 days with a temp explained all my issues and was still told viral but if your body can't fight infections still no better 2 days later rang 111 to be told infection somewhere as gone on for too long 😩 finally got antibiotics. I just feel like they don't understand lupus and what damage it can do
Yeah it's a complete bamboozle. They don't understand it's true. I would get chest infections/pneumonia/legionnaires etc one after another. They don't care now adays and don't give me anything. I did have a stash of Abx from Ukraine though, when I lived there you can ask for anything at the pharmacy and they give you it. But the last yr and two I swear by the onion trick for colds/chesty coughs to stop them going to pneumonia. 1. Boil the onion
2. Eat the onion
3. Drink the boiled onion juice
4. Inhale the onion steam
- in simple terms make an onion soup and since I have not had pneumonia in two and a half yrs. / Just have this every time I'm cold/flu symps. I use to know the science behind this and it seems to work.
Back to answering your question - the Drs on the whole don't understand or can't fully comprehend the damage and issues that come with lupus. It takes on a plethora of conditions and symptoms that can be difficult to treat. And our immune system regulates incorrectly. A good Dr will give you the needed Abx, some things will be viral and you may have to hold it out, but when viral infections persist they can easily be coinvaded with a bacterial/fungal infection on top and it can get nasty. We have to be pertinent to avoid areas where we can get bacterial infections and be very good with hand washing etc. I don't share anything really, bc otherwise it risks an infection I don't need. It's so difficult now when GPs don't see people and deal with issues in and out, and you could get things sorted in real time.
I had the exact same complaints, luckily on the day of my rheumatology appt! She tookbone look at me and sent me gor tests. I had colonoscopy gastroscopy, ct scan, mri chest xray and bloods. Absolutely nothing wrong with me apparently! Although it took a couple of months to have all this done, by which time I felt much better.
yup , all the time . it is called a flare up. welcome to Lupus ... over the next few months you either get stable( meaning )if you are on meds your flare up will be less or unstable - your flare up will increase. All of us here have different coping mechanisms. I have lived with my Lupus for over 13 years now and still struggle with it . Today is my really bad day. in pain 😂. but I know I have just got to put up with it and get on with life and move this body of mine. Oh , if you feel like it wants and you feel like sleeping sleep . because your early stages of lupus I slept so much it was unbelievable. it was like 16 - 18 hours of sleep. Yes , I lost loads of weight. I droped down to 8st(early stage) . but now back to normal weight and can't lose any weight 🤣 but tiredness and lethargy is still there .So , you will learn and find your own ways of coping with it, develop different type of interest to keep you motivated each day. You will find your strength has gone out on you it has taken completely from you , you will need to re build that strength slowly. with gentle exercises. know your limit try not to push too much if you do all your muscles and joints will ache and be in pain. Build them up slowly.
Btw, I get night sweats ( fever) and get very hot this is when I know i have a flare up . All the best .
Hi Zeberdee before I was floored by illness and had to stop work I had many instances of severe stomach pain. I remember once chairing a meeting and I had to get up in the middle and say please call me an ambulance. I could not stand up straight. I was taken to A&E and they were convinced it was my gallbladder. After exhaustive tests I was discharged with you may have celiacs disease. That was disproved also. Then just as suddenly as it started it stopped. Then I got chest pain and again after a trip to A& E I was told that I had pulled a muscle? I knew I hadn’t. After the third time I saw a Cardiologist who said you need stents, after echocardiogram and angiogram I was told there was no narrowing of arteries or blockages , it was Prinzmetal angina and not going to kill me. Next the choking. I saw a Gastroenterologist who said I think you have Crest. Again tests were inconclusive. It is a real nightmare, you have to get it checked but I understand the feelings of being considered a hypochondriac . All these symptoms have come and gone frequently over the past 13 years for me. I really hope your symptoms pass quickly and that you get something to ease the pain. Good luck xxx
Unfortunately this is the world of autoimmunity 🙄 It's a big learning curve. There are times when I'm plodding along quite nicely but other times when I'm in & out of the hospital/at the Doctors constantly for all sorts of weird & wonderful sh*t, which half the time nobody can explain or give rhyme or reason to. Lupus can affect you in all sorts of weird & wonderful ways (remember that one person with lupus will not have exactly the same issues or to the same degree necessarily as someone else with lupus, plus throw in the other autoimmune issues that they may or may not have along with it & it's like a minefield!). The best thing you can do is learn as much about your specific condition/s as possible but most importantly, take note of how YOUR body reacts and learn to read your body (for example, I know that I'm about to have a flare up if I suddenly get a string of ulcers in my mouth. I know it's going to be a particularly bad one if I also get ulcers in my nose). My immune system is pretty decent (when it is 'behaving') and I generally manage to avoid colds or only get them mildly (if my immune system is playing up then it literally goes out searching for virus and infections and I'll pick up anything & everything within a 50 mile radius 🤣) BUT whenever I get gastro (regardless of whether or not my lupus and other AI's are behaving or not), I'm really ill with it and it lasts for months. You're newly diagnosed really and if anything doesn't seem right to you, get it checked out. You are not a hypochondriac, you are learning about how it affects you. Good luck.
I was diagnosed 2 years ago with Lupus, and nearly 12 months ago I started with really bad pain on my right side, I have had numerous test, which come back inconclusive, the pain as eased so I don't have to take cocodomol every day, but still no answers, I am awaiting a Ct scan hopefully that will give me answers, but like you I feel like a hypercondriac
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