Lupus aches pains confused : Hi all please bare... - LUPUS UK


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Lupus aches pains confused

X-Jojom-X profile image
13 Replies

Hi all please bare with me I haven't been on this for a good few years as I find it hard to communicate /open up about my lupus...past few days I've had a lot of joint pain (which I'm pretty used to) been working it's way around my body moving from areas, but now I have terrible jaw pain could this be caused by lupus? I also have agonising pains in my left side under my breast any ideas what this could be? I saw my gp today there was no infection detected in my urine but she gave me antibiotics anyway but how can she prescribe if she dosent know what it is? I've had problems in the past with my pancreas, spleen, gaul bladder.. Past year I've been experiencing bloodshot eyes? Again I'm not sure if this Is lupus, if I'm honest I don't know much about lupus which sounds silly because I have it but the truth is it scares the life out of me reading up on it so I just don't bother, any help would be appreciated, thankyou x

13 Replies
Emt1mb profile image

Hi Jojom,

I'm sorry you've had a rough few months.

Let me make it clear I don't suffer with lupus but I'm a medic with a lot of experience in lupus (mum has the 2 types).

May I ask what medication you are on please, type of lupus, when were you diagnosed and what are your usual symptoms?!

Thank you

X-Jojom-X profile image
X-Jojom-X in reply to Emt1mb

I was diagnosed 8 years ago at the age of 15, I was diagnosed with lupus sle, I also have a condition that affects my blood but not sure what it's called, I'm on imuran (azathioprine) 100mg hydroxycloriquine 400mg omeprazole 20mg and asprin 75mg.

Usual symptoms are general joint/muscle pain which seem to move from one area to another, I also have rashes on my hands and face, sometimes sensitive fingertips /toes. Any advice would be greatful thankyou ☺

Emt1mb profile image
Emt1mb in reply to X-Jojom-X

Hi JoJom

Is your blood condition called anti phospholipid syndrome?

It sounds like your SLE is constantly playing on you, it would be advisable to perhaps get some advice from your rheumatologist or lupus specialist.

My advice would be to extensively read up on your condition on lupus accredited websites/associations, asthis kind of website where people share their experiences have an emotion behind it (anger, fear, pain, frustration) and they use it to share experiences and different points of view. You will defined lay get more answers and relate to your symptoms better that way, after all... We are all individuals.

Try and get Naproxen from your GP, really good anti inflammatory and pain relief without many undesirable side effects.

Good luck

X-Jojom-X profile image
X-Jojom-X in reply to Emt1mb

Thankyou I will get in touch with my consultant as soon as possible, I've tried naproxen numerous times with no effect, I've been given zapain but can only take a low dose as they make me nauseous. Thanks for the advice

Emt1mb profile image
Emt1mb in reply to X-Jojom-X

Try Devils claw from Holland and Barret, it's pretty effective as an anti inflammatory, 2 in the morning, 2 in the evening. It really works!

Paul_Howard profile image
Paul_HowardPartner in reply to X-Jojom-X

Please make sure you discuss any complementary treatments with your consultant before trying them. The one that Emt1mb mentions below 'Devil’s claw' has been reported to interact with anticoagulants, painkillers, heart drugs (for example digoxin) and stomach acid drugs (for example famotidine).

Hi jojom, I have lupus myositis crossed over with lots of diseases including Mixed Connective Tissue Disease. I have huge amounts of joint pains and very swollen fingers which when I shift the gear stick sends massive electric shocks down my wrist. I have a hip with has been very sore for a few days, not been able to sleep on it etc. I have jaw pain too, sometimes it's a real chore to chew. Half my face felt like I had fallen on gravel for just one day, I kept looking in the mirror to check it wasn't swelling up because it felt like it but it looked normal. My rheumy said its all part of the disease. 😞 I'm on 200g planaquil every day, no side effects for me. So sorry you are experiencing this, huge sympathy! Gentle hugs xx

X-Jojom-X profile image
X-Jojom-X in reply to

Hi, thanks for sharing I'm not quite sure what to say seems you have alot more problems than I do hope your well soon! Thankyou x

Levi-1 profile image
Levi-1 in reply to

Try an automatic car where u don't need to change gear I ended up with one naturally meaning I was taken to it due to my condition. U just put in drive & off u go!

U only need to move for park or reverse. Unfortunately I haven't driven for 3 yrs due to all my health probs & I will drive again as have improved a little. I have congenital back condition thyroid, chronic Anemia & arthritis & fibro & more.

Stopped driving strong meds & back pain believe me make the change as if u do have ongoing probs have to be comfortable to be safe! Good luck xxx😢

morlobach profile image

HI , I have Lupus combined with Sjögren and Raynaud diagnosed in 1993, but symptoms since puberty, ( I am 52). I have had many times situations in which a GP could not see inflammation inhibitors or have a clue why I experienced pain and swelling in certain parts of my body. One time I had jaw pain, dentist drilled one tooth… pain gone, filled tooth , pain back. went back and forth till I lost the tooth… ( Healthy tooth) there was nothing to find, had antibiotics , steroids, NSAIDS, the lot… they never found out what was the cause.

another example in 1992. I had so much pain in my back I could not go to work, kidneys were killing me. I was taken into hospital after having a high dose of antibiotics and I went unconscious. A reumatologist gave me steroids, I woke up and a few days was back in work. They didn't know what happened, but the antibiotics made it worse.

My advise: I would be very careful with antibiotics. Your GP is not wrong as such, however, if the origin of your pain is doubtful you should not rely on a gamble of antibiotics. I have a cousin who has fibromatosis. ( part of the autoimmune group) I have heard from quite a few Lupus patients they are having fibro-like symptoms. They are caused by over sensitive nerves, which are thicker than normal. There is no point in taking antibiotics for such pains, it won't help. I am not claiming your pains are caused by fibro symptoms, I am only trying to explain that it is dangerous to just take antibiotics for symptoms if the underlying cause is not determined yet. If you have not got a marker for infection in your blood, it won't do you any good.

You also need to check the medication you are taking, they might have side effects, or worse damage other parts. ( example: Celecoxib damages the lining of your stomach and plaquenil leaves sediment in your eyes to name but 2 examples)

Another very important note is : it's not because you have Lupus you cannot attract anything other NON lupus related condition. Just because your immune system is compromised you are more likely to be effected by other things which might normally not be an issue. I sometimes get problems working in the garden, for I have not enough defence for whatever is out there in the soil. Recently I discovered I could sort of have a bit more defence by adding some garlic to my food, however, the Hopkins institute has published an article in which they say that Lupus Patients should avoid Garlic since it boosts the immune system.

In my case the benefit out ways the negative since the garlic has a positive influence on my menopause issues, lets me sleep better since it reduces the hot flushes and I get less infections from pottering about in the garden. I am experimenting with food to find what works best for me. Some foods have a direct impact on my pains, some on my stiffness, it's searching and trying with the guide of my Reumatologist.

And that is what I want to advise you: YOU need to contact your reumatologist or consultant and discuss your issues thoroughly. Talk about every single aspect of your condition and don't forget to tell him when you are well too.

YOu should keep a diary, what you eat , what you do , your pains and other symptoms. FInd a way to structure your life ( Exercise/ rest balance) and what foods trigger pains, and which ease your pains. I have read many studies, but in all fairness, it's very individual. What works for one person , can be harmful for the other. I don't know why this is , but it's what I have found in talking to other patients.

IN my research I have discovered that we have only very few things in common. This is because Lupus usually doesn't come alone. It comes combined with another auto immune condition. This means that the secondary auto immune might not be so profound as your Lupus, but it might cause symptoms and discomfort in the back ground confusing your medic and yourself, for what is caused by lupus and what isn't.

I hope this helps , I am sorry I can't tell you what to do other than keep a diary and speak to your reumatoligist to find the right balance and best treatment.

Hope you get better soon.


X-Jojom-X profile image
X-Jojom-X in reply to morlobach

Hi, wow that's alot to take in thankyou for the advice I will be contacting my consultant as soon as possible x

e123 profile image

Hi really sorry to hear about this I also find it very scary to read up on stuff and its hard when your always getting new symptoms to not be scared, I have experienced really bad jaw pain during a flare and have also experienced the other symptoms youve described I never really know what the cause is but I'm pretty sure its just the disease and the inflammation it causes in that area.sorry I can't be more help all I can recommend is talking to your rheumatologist about how your feeling, your symptoms and medication maybe they can give you something to help decrease activity of your disease if you're already on something like methotrexate you could try a different one. For now take painkillers preferably NSAIDS and rest and speaking to someone who knows what you're going through like people on here :) hope you feel better soon, El

X-Jojom-X profile image
X-Jojom-X in reply to e123

Thankyou, sorry to hear about your struggle I can completely understand as I can relate to most of what you've said, hope your doing ok, thankyou x

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