Lower back pain, a symptom?

Hi, I have had lupus for years but recently been experiencing terrible lower back pain that is so bad that it has reduced me to tears (I usually cope well with it but is now really getting me down) I take hydroxychloraquine 400mg daily but feel that I am having a flare up as my headaches and wrist pain have returned. GP has prescribed tramadol to help with the back pain but I am so tired of constantly being in pain. Has anyone had similar and have you had acupuncture or visited a chiropractor with success?

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  • Hello johookway...I can virtually feel your pain...sorry you're going through this

    Have lived with infant onset lupus + chronic pain throughout my spine all my life due to a childhood accident...am 63 now.

    You probably know it's thought SLE only affects synovial joints, and in the spine these are at the very bottom (2 sacral joints) and at the very top (the cervical joint that meets the skull) but my lupus clinic acknowledges that lupus activity is attracted to any site of inflammation, so, if you have spondylosis (osteoarthritis of the spine) there can be a degree of SLE-related inflammation causing pain. From your description, the joint pain is widely spread, which would make me suspect active inflammatory process...but, in my experience, spine-related pain can be very complex...calling for treatment on several fronts.

    My feeling is that both your GP (my feeling is that just supplying tramadol isn't good enough) & your lupus clinic need to know about these symptoms. They should be documented in your records and investigations considered + your treatment plan should be reconsidered. When we added low dose 4 week pred tapers to the daily hydroxy I started on 5+ years ago, my spine-related pain became more manageable...and when we added daily mycophenolate my spine-related pain damped right down. This really impressed me cause before my infant onset lupus diagnosis was recovered in 2011, the NHS had had me spend years on prescription NSAIDs, opiate analgesics etc which did little except turn me into a zombie. The other angle in my case was to check for things like abdominal aortic aneurysm etc (I have vascular ehlers danlos hypermobility)...perhaps you have other angles too

    For what it's worth: over the decades I've tried almost every body work therapy under the sun, from chiropractors & osteopaths to reiki & traditional acupuncture. What's helps me most have been the Alexander Technique, yoga, pilates, tai chi...and a special type of deep acupuncture called IMS (more on that below)

    In my 40s, NHS neurosurgery had me booked in for double discectomy, but at the last mo I insisted on referral to Pain Clinic. The PC consultant did diagnostic blocks which indicated permanent operating room bilateral spinal facet joint denervations could help me. A series of these over 10 years numbed the pain enough to make a big pos diff, but what also helped hugely was the physio rehab my PC prescribed: deep dry needling (also called IMS (intramuscular stimulation) only practiced by certified practitioners (usually physios, gps, pain consultants)). This link explains:

    istop.org/faqs.html

    And this website should be able to help you locate a practitioner near you:

    whatclinic.com/about/

    Am sure you've got your own lifestyle + OTC favs for this...but now, when I do have a flare of lower spine pain, I can usually damp it down with paracetamol & Thermacare lumbar heat wraps (available from most chemists inc Amazon...for me they are brill) & gentle stretching exercise + lifestyle stuff like sleeping in a good mattress with cushion under knees etc...and using memory foam cushions when sitting (wedges & lumbar supports etc)

    thermacare.com

    No doubt you'll be realising this is one of my specialist subjects 😏: apologies if am just repeating stuff you know already..and of course there is the simple fact that there are as many versions of spine pain & its treatment as there are individuals 😉

    Hope you'll let us know how you get on

    🍀🍀🍀🍀 coco

  • I've had lower back pain for so many years and at its worst gave me very dark thoughts. Also for many weeks I couldn't sit - just had to stand or lie flat. I tried all the hospital therapies and alternative therapies. In the end I booked my own private MRI which showed prolapsed disc trouble. The hospital suggested I wait another year in case it got better !!! but I pushed and had a small operation on the spine. Such a miracle.

    They removed calcified prolapsed stuff. It was never going to get better and for the last year I feel I have my life back. Sometimes you just have to go for surgery. Have you had an MRI (not xray)? I am careful with my back but to be able to get in and out of a car without thinking, drive more than a mile, sit in front of the tv, bend without worrying is all so wonderful. Push for further investigations. Back pain is exhausting and you don't need it on top of Lupus. good luck

  • Hi there,

    I am sorry to hear that you are experiencing this pain.

    You might find our leaflet on muscles and joints useful and your can download or request it at lupusuk.org.uk/wp-content/u...

    You might want to make contact with your consultant if you feel you have a flare coming on, in case your treatment regimen needs to be adjusted.

  • I agree with BC, your rheumy needs to know about your back pain. It may or may not be related to autoimmune issues, but either way, they should be able to make recommendations for further investigation or meds to ease your pain. Hope you get some relief soon.

  • God I am going through the same thing also in my right side and upper back on the right side to, do take hydroxychloraquine , thinking about stop taking them afraid of losing sight

  • Hi Canam11,

    Please make sure that you discuss your concerns about your medication with your consultant before stopping them, and that if you do choose to stop them it is done under their supervision. Are you having your eyes tested every 12 months?

    Here is what 'The Lupus Encyclopedia' by Donald E Thomas Jr, says;

    "Over the past decade, more cases of hydroxychloroquine retinopathy have been reported. However, it is still suggested that it probably occurs in only 1% to 3% of people when it is taken for more than 7 years. The risk of developing retinopathy coincides with the cumulative dose of hydroxychloroquine.

    "Retinopathy from hydroxychloroquine is very rare under a cumulative dose of 1,000,000mg of hydroxychloroquine. Since most people who have lupus take 400mg a day, that calculates out to be 7 years of hydroxychloroquine, meaning that it would be very rare to ever develop retinopathy after taking it for 7 years or less at this dose.

    "If [all current recommendations] are followed closely, then it should be rare for anyone to develop any significant eye problems from hydroxychloroquine. This will help keep its place as the safest medicine that doctors have to treat lupus. In fact, your ophthalmologist should detect any problems before you would ever notice any visual changes at all. When caught early, hydroxychloroquine retinopathy usually causes no symptoms whatsoever."

  • Thanks, I do get my eyes check so far yhey ssy i have a small spot but nothing to be worried about right

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