I have been in a lot of pain in my hips and spine. I have SLE plus a lot of problems with the bottom of my spine.

A friend has recommended a combination of supplements and wondered if anyone else has tried them.

They are Glucosamime, Chondroitin and MSM.

I have been prescribed a lot of different painkillers but have not found any that I don't get a severe reaction to except Co- Codamol and would love to be able to walk a bit more than 20 yards before having to stop to let the pain ease so I can walk a little bit more.

Also another question. Went to doctors because I suddenly lost my hearing, he listened to my heart and found a murmur. Apparently I was first diagnosed with one aged 4 years but I knew nothing about it and don't think parents did either. No other doctors have heard this so is this a new one. Going through tests at moment to find out what it is. Is this to do with SLE or a different part of Lupus.

Got a lot of questions but will leave it at that

Thank you

11 Replies

  • Hi Custardpot (LOVE the name! )

    Have you asked for acupuncture? My husband (osteoprosis on NHS) has started a course and though not last all day, really gives him a break.

    I don't know if it is a Lupus symptom but as it seems on here that there are lots of things that can be affect Lupus so possible.

    Dont know about supplements but someone on here will do!

    Good wishes.

  • Yes acupuncture has helped only fault is only can have six sessions on national health then got to wait a while before you can get referred again so just as it is taking affect it stops.

  • I have wear and tear arthritis in my Lumbar region - never had scan or X-ray to confirm but this was what my rheumatologist said. I do find that keeping moving helps - I try to walk everyday and do yoga and muscle exercises on my Nintendo wii fit plus. Sometimes it is very hard to keep this going but I find that if I don't then things worsen so that's the incentive. I can't tolerate drugs well either so the exercises and keeping to a very healthy diet are extra important. Someone told me yesterday that cod liver oil is the the best suppliment for arthritis.

  • I have had x-rays (several which cause one hell of a lot of pain) on my Hips and Back and MRI scans on my back.

    The x-rays do not show much arthritis damage in my hips but this could be Lupus Arthritis which does not cause damage but gives a hell of a lot of pain.

    The MRI showed problems in my back are OSTEOARTHRITIS at FACET JOINTS at BACK of SPINE at the 3 BOTTOM VERTEBRAE in my SPINE




    I find it extremely difficult to do any exercise but do try and even though it causes a lot of pain I do walk in fact I do not drive so have to walk to get anything I need. I have a stairlift but only use it when I really have to.

    I eat healthily as I follow Slimming World Healthy Eating Plan.

    Thank you for replying

  • Hi. I have osteoarthritis in both hips and have been told that I will definitely need replacements on both sides at some point. (I am 40). I had been running and was told to stop this. I was advised no impact sports. No breast stroke - apparently not good for bad hips. He said by bring careful we could hopefully delay operations as long as possible. Anyway, he also recommended Glucosamine Sulphate 1500 per day. I asked if I should take cod liver oil and he said whilst he could not recommend it, it wouldn't do me any harm, so I take 1000 of that per day too. Good luck.

  • Thank you for your reply. I think I will try the Glucosamine Sulphate and cod liver oil.

  • Hi Custardpot

    I have nerve and osteoarthritis pain in back and right leg and have a lot of help from injections done by my local Pain Clinic. They can recommend different drugs from what GP's can offer so worth a thought. If you try a supplement always ask your Rheumy about possible clashes with your Lupus treatment. Good luckX

  • Thank you for your reply. Yes I have decided to ask for a referral to Pain Clinic. It is no good asking my Rheumy she would not be interested.

  • You sound exactly like me!!!! I have an ongoing spine problem and have regular epidurals to help with pain..I also have hip shoulder and knee problems...I too have a heart murmur which I was born with...and also aortic stenosis which my Dr thinks has been made worse due to lupus....If it wasn't for codine I don't think I would function. .am on blood pressure tablets to keep my blood pressure low so as not to cause more problems for my heart...They think now I have had lupus for years but only got diagnosis last November. a lot of damage they can't reverse...This site is brilliant for people like us as we have others we can chat to....I'm 44 now and wish I had known years back about lupus and maybe I wouldn't feel as bad now!!!! When I got diagnosis I was relieved I wasn't actually going nuts!! to your GP about maybe getting referred to a neuro surgeon for back neuro guy is amazing...and in his words..just wants me to be upright for as long as possible xx

  • Thank you for your reply. I did at one time get referred to a Neuro Surgeon but it was a at a hospital I could not get to on public transport and when I rang up to tell them they said they would get it transferred to another hospital but again the appointment came for the same hospital. I phoned again and they said they would get in touch but never did.

  • I have a heart valve prolapse which I believe I have had since birth. Although it can cause problems. It can also be benign. One GP, Internist, made a big deal of it and missed what was going on with the lupus. Just saying.....

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