Aching and sore joints: Hi I got diagnosed with... - LUPUS UK

LUPUS UK

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Aching and sore joints

Gemllo profile image
20 Replies

Hi I got diagnosed with discoid lupus last year have been on hydroxy for 9 months with no issues but over the last few months every joint that could possibly hurt hurts. I was to ho and see a rheumatologist but euth lock down yhus has been postponed. Are my very painful joints normal ? Some of my fingers are slightly numb at the tips too and the back of my heels are too sore to touch. I've seen an orthopaedic and through xray they discovered ive bone growing around my right hip that shouldn't be there but appts cancelled with them at the moment too. Does anyone have any pain releif suggestions to help through lockdown??

20 Replies
Kevin53 profile image
Kevin53

Worth checking with GP for pain relief. Paracetamol is readily available now. Always worth consulting the GP on ibuprofen etc. Best wishes Kevin

Gemllo profile image
Gemllo in reply to Kevin53

Thanks Kev I'll give them a call on Tuesday

miccika1 profile image
miccika1

Can't you schedule a virtual doctor's visit ?

Gemllo profile image
Gemllo in reply to miccika1

I'll call and see what they eat. I'm already taking cocodamol but doesn't seem to be doing alot

Gemllo profile image
Gemllo in reply to Gemllo

Say not eat ..

miccika1 profile image
miccika1

Also the painful joints and pain in heels is not normal. Almost feels like you also have some neurological symptoms. Hope you get i. Touch with rheumatologist or neurologist to figure this out

Gemllo profile image
Gemllo in reply to miccika1

Me to

LalSD profile image
LalSD

Hello Gemllo, I am in the same dituation. Just got up and can not walk without pain. Try hot bath.

I use castor oil, black castor oil for pain and take Brufen 800mg every 12 hours For 3 days, strong anti inflammatory. After 3 days I stop and have a break. It gives me a week or so relief.

The oil on my joints applied with hot water bottle helps with joint pain. Please please don’t use it around your heels. Not sure of the reason unless you are certain it’s ok to use.

Castor oil applied externally to joints help reduce inflammation and if you also put hot water bottle in the area it helps to penetrate to the joint to ease pain. Please don’t use if your skin is broken, although there may not be any issue, I can not be sure on the reaction. Hope this helps.

I feel like I have gone back to 10 years ago where I could not work or function Because of SLE. 10 years of trying to get better has just been wiped out. I can barely walk because of the pain and can’t access to a simple medication. You are not alone. Lots of love, Lx

Gemllo profile image
Gemllo in reply to LalSD

Hiya thanks so much for this I will definitely try both of these. I was getting to the point where the pain was just taking over everything didnt know wether to exercise more or do less but am also working from home at the moment too so am not out and about as much as usual. I do use a hot water bottle anyway but will try with the oil too. Thankyou again x

LalSD profile image
LalSD in reply to Gemllo

Hello Gemllo, you can not take brufen 800mg without consulting with your GP as it is a prescription drug. The one I take is a single tablet. It is a specific one, not a drug store tablet. I hope you feel better soon. xxx

Gemllo profile image
Gemllo in reply to LalSD

Ah right ok I actually thought you meant you took 4 x 200mg . I'll spk yo my GP

Mala23 profile image
Mala23

Hi I really suffered with achy joints a few years ago. Pain meds did not help as they only masked the pain. Since then I ave been taking tumeric daily and it really helps. I notice if i do not take it for a few days. Now when I get aching joints it is usually when I have over done it. I have found that I am able to do more but I still need to listen to my body to prevent myself overdoing it. Have you tried anything like this? Maybe ask your consultant what they think?

Sjorgrenslady profile image
Sjorgrenslady in reply to Mala23

I’ve just started taking turmeric hoping that it will help the joint pain

Mala23 profile image
Mala23 in reply to Sjorgrenslady

Good luck and make sure that you buy the one with less fillers and with the active ingredient that helps your body to absorb it better. Sorry I cannot remember what it is called. I will look for the box and post an update later. I also find Reiki helps me to on different levels.

Sjorgrenslady profile image
Sjorgrenslady in reply to Mala23

I think its black pepper and vitamin c helps thank you for your help too

Gemllo profile image
Gemllo

I've heard people say before that they took turmeric I may give it a try it cant hurt to try different methods. Thank you

heatherevans28 profile image
heatherevans28

This is definitely worth discussing with your GP and consultant. It doesn't sound like systemic lupus, but it could be caused by any number of things. Pain should never be ignored and I'm sure they will be able to do some tests to rule out (or find) common causes.

In terms of pain relief, heat packs and hot baths are often helpful. Paracetemol can also help but stronger pain killers are unlikely to be beneficial. I would also recommend you try some basic yoga stretches specifically for full body or pain. There's loads of these on youtube for beginners. With any pain, tension in the muscles can increase because your body tries to compensate. This in itself can make the pain worse, or cause it to move. Stretching daily will help with this.

Hope you get some relief soon x

Gemllo profile image
Gemllo in reply to heatherevans28

Thanks for the advise. I've recently started doing a little yoga so will persist with that x

Cas70 profile image
Cas70

I take Co-codamol. Check against any other meds but I was told not to take Ibuprofens. The joints and bone ache as I call it is normal with Discoid or SLE. Have you been tested for Sjogren’s? It is an autoimmune illness and they all go hand in hand a lot. If you have dry mouth, eyes it could be a sign but definitely the aching bones. This warm weather will set it off, any change of climate. Good luck.

Gemllo profile image
Gemllo in reply to Cas70

I havent been tested for sjogrens but its something I'll definitely mention. Thank you

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