new to lupus and diagnosis: pain and what to do! - LUPUS UK

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new to lupus and diagnosis: pain and what to do!

M0wnt profile image
10 Replies

Hello, I have been diagnosed with lupus from a skin rash I get with the sun. However I am currently waiting for a Rheumatology appointment as I have chronic pain in lumbar spin, SI joint, and cervical pain. I am currently in a massive flare and I can’t find comfort. Walking gentle is ok, sitting is agony and if I do anything too much it just makes it worse. Over the counter codeine does nothing. What is the best way to manage this right now?

Thank you 🙏

10 Replies
Mo144 profile image
Mo144

If your in a middle of a flare you probably need steroids. If it's more then a few days until your appointment don't wait ant talk to your family doctor so he will aprrove you to go to the ER.I was in a similar situation and it was to to go the ER or to wait 6 months for the appointment.

At the end I was in the hospital for 2 weeks.

Don't wait too long it won't get better on it own.

M0wnt profile image
M0wnt in reply to Mo144

Hi, I am so new to this that I don’t know if I should go the nurse or the gp. I have only had one appointment which is one they diagnosed me from a skin biopsy. I am waiting to see a rheumatologist, so I don’t know if the nurse as I saw was only for dermatology or not. I phoned my gp as I just needed to get pain relief so got co-codamol.

I have also called Occi health as they may be able to push the appointment through faster as I work for the NHS.

What are the main side effects people experience with steroids?

Thank you for your response.

SJ

Mo144 profile image
Mo144 in reply to M0wnt

Steroids is the magic pill works immediately but has a lot of side effect. It depends on the dose you'll receive and for how long. But don't worry they all go away once you stop taking them. And not sure youll need them. It depends how serious is the flare up... That why I suggest to see rheumatology asap. Not quit sure how things works in UK

But where I live I had to wait for 6 months until there was an appointment available with the rheumatology so I called the clinic and I was told if I feel really bad I should do to the ER and if the situation is indeed serious they hospitalized you and get you a rheumatology doctor immediately.

If pain killers works and you can wait until your appointment then i also suggest you to ask you doctor to have some blood test (which the rheumatology will ask anyway so it saves some time.)

Ask him for complete blood works

Plus

DNA c3 c4

CRP

Urine test

Those basic tests will tell you and your doctor if your immune system is going crazy and how serious is the flare up. Then if its really high I'm sure your doctor will know what to do and how to speed things up.

Penvelope profile image
Penvelope

Hi M0wnt, sorry you are having such a horrible time. I’ve been having a painful lupus? flare up since May. I haven’t found painkillers much use, except paracetamol, which doesn’t do much for the pain, but makes me feel more lively! Then in September they found I was vitamin D deficient & prescribed 20000 iu vitamin D3 weekly. This has helped a lot with the pain, movement & fatigue. Vitamin D deficiency seems to cause all sorts of things especially back, bone & muscle pain, so worth getting it checked if you haven’t already. I hope you have a nice GP & feel better soon.

M0wnt profile image
M0wnt in reply to Penvelope

Hi P, thank you for your reply. I have been on vitamin D, and B for a while now and yes definitely helps the fatigue. My pain is chronic sacrum inflammation, haven’t been able to sit for a couple of days. I have just spoke to GP who has prescribed some stronger co-codamol, and ibuprofen rub.

I am in such a learning curve of trying to work out what my limits are, how much rest I need and so on. It’s so much harder than people think because I have always been such an active person. I used to run 100 mountain miles for fun and now I am spending a lot of time laid up.

Sorry I shouldn’t moan like this as there are many of you at lot worse. It’s just all new and hard to adapt.

I am so glad that you have found something that works for you. 🙏 take care.

SJ

Jackpot67 profile image
Jackpot67

See your GP ASAP for blood test to check your inflammation levels, and GP can also get advice and guidance from rheumatology without you having been seen yet. Good luck 🙂

MusicalFurbaby profile image
MusicalFurbaby

Hi M0wnt, there’s almost nothing worse than back pain, is there? I’ve been living with chronic back pain for close to 30 years (nothing to do with lupus, my spine is just twisted) and short of taking meds, there are a few home remedies that I find helpful:

- heat packs - but for acute inflammation, ice packs are better. They calm down the swelling. For really severe pain, I use both alternately. Ice for 15min first, then 10min heat, 10min ice, and so on until they both come to room temperature. The extremes of cold and heat shock the muscles into relaxing.

- anti-inflammatory rubs are awesome. I use Voltaren ointment. I also use something called ‘Zen’ ointment, which is a high menthol concoction (similar to deep heat etc.) The advantage of menthol rubs is you can combine them with oral anti-inflammatories without worrying about overdosing.

- epsom salt baths. These make me feel almost human again. Soak for at least 30min.

- tennis balls. If there is a particularly sore spot or tight muscle, get a tennis ball or similar and stand against a wall. Put the tennis ball between your sore spot and the wall. Lean against it and let the tennis ball do all the work.

- longer-term: turmeric. I found I had to take a high dose for at least a month before I noticed benefits. It reduced my joint inflammation by about 50%. Tip: take it with peppercorns (just a couple) to aid absorption.

- gentle stretches. I have a few favourite stretches that I hold, very gently, that help restore my spine. But if I am in acute inflammation, I avoid stretching the area, as it can make the inflammation worse.

Finally, listen to your body. It’s always frustrating when we can’t do what we want to do, but try to be kind to yourself and pace yourself so as not to make the pain worse. Hang in there—I feel your pain!

M0wnt profile image
M0wnt in reply to MusicalFurbaby

Hi M, some very good suggestions there. I have recently bought the best hot water bottle which is my new best friend and a super heavy, soft fluffy blanket which reduces the sensitivity on my skin when it is so inflamed. I was thinking of the cold and heat, I was just dreading putting a cold pack onto it 🤣.

I have foam rollers and know yoga but all this is totally not practical at the moment as the inflammation felt at the bones and joints in the sacrum, and I couldn’t get in any position to relive the pain. Even on my back or side it puts pressure on your sacrum whatever you do. It then started to tug in my pubic bone.

I just need to get to see that rheumatologist as it feels like I have been fobbed off by so many dr’s and specialists lately as I started on antidepressants last year and since then they blame everything on my mental health.

My mental health is affected by my fatigue, and pain, and doing too much but it’s all a learning curve.

When manage symptoms people don’t see how much you are coping with internally and then when the pain gets to much or fatigue and you break everyone is quick to point to mental health rather than the pain I am in.

You and a friend have both mentioned turmeric. What measurements of turmeric do people have daily?

Thank you all for replies and talking because some days if feels a very lonely place and it’s good to talk and learn.

I have to say I am scared about steroids!

SJ x

MusicalFurbaby profile image
MusicalFurbaby in reply to M0wnt

Hi M0wnt, I totally understand your reticence about steroids. They’re a last resort for me, due to concerns about side effects. But I took them last year to treat an acute case of shingles, and truly, they did wonders for the blinding pain (and hence my sanity). But let your doc be the best judge of that.

I stopped the turmeric a few years back because it stops being effective after a while (but you can then recommence it again, apparently) so I can’t remember the dose. But it was high—I think 400mg? But don’t quote me on that!

I can understand your mental health being affected by pain, fatigue and the rest. Look after yourself. We need extra self-care when we are in extra pain!

M0wnt profile image
M0wnt in reply to MusicalFurbaby

thank you M.x

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