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Desperately need advice - stuck in a rut with CNS Lupus


A few months ago I had a lumbar puncture and sensory tests done as I have we been diagnosed with CNS Lupus with possible high chord lesion. My symptoms are chronic pain down my whole right side. My symptoms, thankfully have not changed in 18 months and I have been on very strong (and potentially addictive) pain meds.

My results came back all clear. This, I know, is fantastic but it me a means they have not found the reason for the pain. The pain intensifies with any activity. My neurologist is going to speak to Dr D'Cruz to ask what the next step is. The thought is to take a risk and start me on immune suppression meds and hope its the right pain. My next appointment is April which is so far away.

My occupational health therapist has said that as I have been on pain meds for so long I need to start coming off them and start to do exercise again.

I feel so frustrated.

Do I wait for my neurologist to decide what to do? What if they say they can do nothing? What could be the cause of my pain? Do I try come off my meds? Is there alternative meds/therapies I could try?

Any advice would be helpful

7 Replies

Hi ange726, have you seen a physiotherapist? A good/experienced physio may be able to identify the causing your pain.


Hi Bebe76

Thank you so much for replying.

Yes I did see a physiotherapist close to the beginning of my pain. They tried everything, then had to concede there was nothing else they could do. Everything just caused pain. Not while actually doing any exercise but afterwards.


Before starting an exercise plan, the physio should have done an assessment to try to determine the cause of your pain (for example pinched nerve/muscular pain/joints/tendons/etc.). If related to your CNS lupus, them they might not have been able to find an obvious source of your pain. Hopefully Dr. D'Cruz will have some good advice.


Hi Ange, sorry you’ve got this going on. I have read lots of studies on CNS lupus and the research shows that these tests will often be clear. The lumber puncture is often to rule out other causes and the sensory/ nerve tests often can’t detect the small fibre neuropathy more common in these problems.

Do you still have the other symptoms in addition to the pain? I got stuck between 2 different views from the neurologists and rheumatologist as the neurologists wanted to just treat pain etc but the rheumatologist said any lupus attack in the nervous system needs treating aggressively so started high steroids and immunosuppressants. I was so much better on higher steroids but have re-flared again as I got below 10mg so back to 40mg and I have my first rituximab next week.

April seems a long time to wait. Do you have a rheumatologist as well as a neurologist? My experience, (after being sent around several of the neurology department!) is that their understanding of lupus and the effects of lupus on the nervous system is very poor so you need rheumatology input too?

Can you phone your rheumatologist? Mine has been fantastic, sees me every few weeks at the moment and rings straight back with advice/ more treatment if I get worse. Maybe yours could fit you in soon?



Hi Melba1. Took your advice and pushed to get a quicker appointment. Just posted a message saying I'm starting on immunosuppressants and steroids. Dose is 1000mg of myfenax and 7.5 of prednisone.

Have you had experience of Myfenax?

Many thanks x


Hi Ange726,

We are not medically trained here, it is important that you discuss this with your doctor.

Please do not come off your medication without speaking to your doctor. This can be detrimental to your health. If you are looking for complementary therapies, you can read our blog article on ‘pain management’ here: lupusuk.org.uk/pain-managem...

Before attending your appointment you may like to read our blog article about getting the most from medical appointments here: lupusuk.org.uk/getting-the-...

Please keep us updated, wishing you all the best.


Hi Chanpreet

Many thanks for your reply and concern. I would never come off any medication unless it was under strict supervision. I'm moving forward with treatment so will see how that goes.

Many thanks


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