LUPUS UK
21,913 members17,347 posts

Still getting more pain

Hi all, so following on from my multiple joint pain, I have tried to get referred to rheumatologist but no one is willing to do it. I have had a really bad back and now my wrist has joined the party😢. I am in so much pain I can't cope. My back has been blamed on the problem with my feet! Just waiting for someone to blame my wrist on my foot pain as well lol! I am exhausted from all the sleep I have lost and the constant daily pain. I have been in tears but I keep being told it is just bad luck to have so many joint problems.....

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It COULD all be due to back problems - perhaps a session with a physiotherapist or therapeutic massage therapist might shed some light if you can afford one.

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Have they given you anything to help manage the symptoms? Pain is terrible. I always have some degree of pain, but it hasn't been awful in about 6 months! I've been where you are and it will get better. Keep fighting for some relief.

When I have pain, I just have to keep remembering to try it all. Hot bath, hot tub, essential oils, heating pad, icy hot. Whatever it takes (on top of any OTC or pain meds).

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I have been given low dose co codamol which make me feel sick so only take them when it gets too much and topical anti-inflammatory gel. Heat sorted my back out but have been told to use ice on my hand. Also sent to physio but to be honest I can't fit in a load of physio sessions with work so I am trying yoga. Someone on here has said my back could be the main issue so I may try a chiropractor. I am really down the moment because of lack of sleep and relentless pain 😢😖

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I totally get it. When I'm in pain, I usually can't think straight either.

When you feel better, look at your diet too. I cut out gluten a few months ago, and the pain has been significantly better. I thought it was odd... But, it worked.

Also, tell your dr that the med makes you sick. They can try a different one or different option altogether. It won't last forever. You will get a break in there at some point. Hang in there.

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The gluten thing is interesting because my son, my sister and nephew are all coeliac and my test came back negative. Might be worth a try 👍

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Might be worth changing doctors if there is another one near you

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Hi Jrrees81,

I am sorry to hear that you are experiencing a lot of pain, are you able discuss your pain management system with your GP?

We published a blog article on ‘pain management’ which contains helpful tips and information which you can read here: lupusuk.org.uk/pain-managem...

Have you thought about being referred to a different rheumatologist? We published an article on our blog which has a section discussing how you can change your rheumatologist and be referred elsewhere. lupusuk.org.uk/getting-the-...

The NHS Choices’ website provides information on sleep hygiene which I hope you will find useful: nhs.uk/LiveWell/sleep/Pages...

Having someone to speak to can help improve your overall wellbeing as well as help you cope with certain situations which can be tough. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at Chanpreet@lupusuk.org.uk

You can read our factsheet on LUPUS: The Joints and Muscles here: lupusuk.org.uk/wp-content/u...

Please keep us updated, wishing you all the best.

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Thanks for the advice. I have not been diagnosed with anything because my ana test was only a weak positive and the inflammatory markers were low so I haven't been referred to a rheumatologist. I have been told all the separate joint pains are coincidental and one may even be causing some of the others. 😕 x

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