Doc says Hip and back pain not linked to lupus?

(sorry I posted this in wrong forum earlier)

I am at a loss. I used to be fit and strong, even with 20 years of undiagnosed lupus symptoms (exhaustion, thinning hair, sun rashes, positive ana), I could still walk for hours, swim, take my child to the park, do part time work, all the housework and even home pilates! Now aged 50 I became over a few months a woman of 85, staggering around on a zimmer, fretting about pain management in case I end up incapable of even standing up to get to the loo in time. I might be ok for two days, albeit limping a little. Then out of nowhere, often when trying to get up after lying down, I'm in screaming agony again which leaves me shattered and frightened.

I know this isn't how it should be.

I was finally diagnosed with lupus recently after a horrific summer where I ended up in a wheelchair with a high fever, sun rashes, swollen, sore lumpy, numb hands and fingers, agonising back pain which shifted randomly from shoulder to rib cage to flank, and a frozen right hip which stopped me walking. I lost half a stone in 2 weeks because I could barely eat. My young child and husband suffered seeing me like this, and we have no relatives to help. Now, 4 months on, having had NO treatment despite seeing my GP several times, a dermatologist twice, and 2 rheumatologist consultants, the rashes and swollen fingers went but I am still exhausted and the hip pain is still there, stopping me from leading a full life, from being able to pick up my child from school, to do even a quarter of what I could do before the flare.

My hips have clicked for years. Sometimes when I wake up I have to click them out in all kinds of funny positions til I'm freed up enough to walk properly. Clicking seems to relieve the sense of having a migraine in the hips. I'm very flexible to the point of being almost hyper mobile, and one consultant suggested this was the problem.

The pain can be in the bone at the top of the buttocks or deep in the buttocks where the top of the thigh bone hits the socket, and it leaves me crippled. Then perhaps after rest, it's ok again. The times of being ok again are now limited to 2 days a week instead of months and months.

I went to the Louise Coote clinic for the first time recently and despite being thoroughly prepared with lab results, consultants letters, a biopsy with a positive result for lupus and photos and diary of every stage of the flare, the appointment was a tragic farce. The doctor seemed to want to use the ten minutes to ascertain whether or not I had lupus. Meanwhile I had the positive results in my hand and wanted treatment or at least answers as to what was causing my hip pain. While I appreciate I was not showing obvious signs of being in flare that morning, I still felt exhausted and in terrible pain from my hips. However I was sent away neither of these and told to, 'Make an appointment for a few months time' when I may or may not be given treatment. I was told there was no way that Lupus was associated with agonising back or hip pain.

I was staggered.

I have read in Daniel Wallace's The Lupus Book that hip, back and shoulder pain is indeed associated with Lupus, whether it's fibromyalgia, athralgia, myosotis, rheumatoid arthritis or worse avascular necrosis (indeed I already have High Lp(a) a blood clotting disorder). My suggestions that these be considered were poo-poohed.

Believe me, I do not want awful medications with all their horrible side effects, or indeed surgery. I am so gluten, dairy, nightshade free I've become the joke of all my friends. But I need to be able to move properly again. I just want answers so I can make choices.

So what do I do next?

Can I ask to see a different doctor at Louise Coote next time?

Any suggestions who might be more helpful for me at the clinic or indeed anywhere in London or the south East?

Has anyone else been through this?

I would be grateful for any responses please.

Thanks a lot.

22 Replies

  • After being treated by leaders in the field for many years and at best stemming further symptoms I came across an article that started me questioning the care package on offer from conventional medicine.

    Google 'The Rick Simpson Story'.

    Its a true account of a guy who realises he has found a cancer cure. But his every attempt to get the conventional medical community to take account of it was blocked.

    His final reasoning was that there was so much money tied up in disease foundations, recurring ineffective treatments and doctors whose very livelihoods may be impacted if there were cures enabled things to stay the same.

    I have since found other instances of cancer cures that have been totally denied publicity.

    My thinking then extended as to whether this may indeed be happening in other fields.

    I have read of instances where people manage to take back huge chunks of their life by paying very strict attention to theur diet. Its not a quick fix but I don't feel that the answer is in numerous pills either.

  • Thanks so much for your input. I will look up Rick Simpson story. I am gluten, dairy, nightshade free but sometimes sugar in the form of chocolate creeps in when I'm so exhausted I need a fix! I agree re big pharma and am will try to be watchful.

  • Hi Roromatic

    So sorry to read of your agonising hip and back pain and how it's changed your life. So tough!. Have you had your hip and back X rayed or an MRI ?. It is true that it doesn't have to be Lupus causing this. I have similar problems that have been helped by a Pain Clinic giving me steroid injections into my back as I have inflammation of the facet joint, wear and tear and a different form of sciatica called Piriformis Syndrome . There's a tiny muscle in the area you are getting pain called the Piriformis that can cause agony if irritated. Also if you are getting pain on the side of your hip and you can put your finger on the spot you may have Bursitis which can be treated with anti inflammatories. It's important that you try to ascertain what your pain is so you can get the help you need which I know is what you expected London to do for you. Your GP can help with this and I hope I've helped you?. Best of luckX

  • Thanks Misty. I will write these conditions down and present them to my consultants and GP. Info like this really speeds things along!

  • Oh I omitted to mention that I too suffer with back pain and coincidentally it seems to flare when my lupus is flaring

  • Sorry, I keep doing this. I have just noted that you have blood clotting issues as well

    Have a read of this

    On the hughes forum

  • Thank you OHL. Important for me to to know that others experience actual 'pain' rather than mere 'aching' next time I visit medics who insist otherwise.

  • Like misty & overnighthearingloss, I too have chronic complex spine pain. And I'm now 61 and in less pain than ever thanks to a lifetime of searching for accurate diagnosis & treatment. Much of the time I have felt as low, disabled and frustrated as I sense you do. So I am vvv much feeling for you

    A bit of my story may encourage you, so I'll tell it below. But first, I should say that I think misty & overnighthearingloss have answered your questions really well: yes, lifestyle management is vital, but first off your lower spine needs to be fully examined & scanned. If you've seen orthopedics & neurology for that already, then perhaps second opinions are in order, but mainly my suggestion is that you keep your Louise coote appt, and meanwhile a gp referral to your local NHS Pain Clinic might be the best way to get the causes of your spine & hips pain figured out. Then, take heart: if drs prescribe medication, just give it a go: if it disagrees with you, you can stop it & try something else. I've always avoided prescription meds if at all possible, but I've ended up vvvv thankful to now be on several prescription meds that have greatly improved the quality of my life and relieved my chronic spine pain and also my hip pain which is vvvvvv much like the hip pain you describe

    As it's turned out, both my chronic long term cervical & lumbar sacral spine + hips pain are due to several factors including highly likely synovial SLE (in the spine only the sacral joints & the top cervical joint are synovial. You'll know from Wallace that Lupus affects synovial joints). The other main factors involved in causing my chronic spine pain are global ehlers danlos type hypermobility, spondylosis, arthralgia + early-life spinal injuries. Some people have straightforward simple spine pain involving nerve root or spinal cord compression, or other clear cut causes. Others, like me, are more complicated. Complicated cases often take longer to be diagnosed & effectively treated.

    Until 3+ years ago, my infant unset lupus went unrecognised & untreated systemically, while conditions secondary to my version of lupus were very gradually diagnosed & treated by the nhs over the decades with enough success to be encouraging. Meanwhile I became expert at lifestyle management and my family & friends learned to accept me as I was. At first, in the '80s & '90s, while I was finding prescription NSAIDS & analgesic opioids barely helpful, my spine was thoroughly examined & scanned by orthopedics & neurology, leading to a series of Pain Clinic bilateral facet joint denervation procedures over 10 years. These procedures numbed much of my spine pain. But enough lower spine & hip pain remained until last year, when prednisolone & mycophenolate for my NC lupus symptoms dramatically also relieved that lingering spine & hip pain....demonstrating that my version of lupus is involved in causing my lower spine & hip pain. Our conclusion is that the synovial joints in my sacrum & hips are most probably involved in the chronic pain there, and this is all responding to the systemic lupus meds I now take.

    Apologies for going on at such length!

    Take care & take heart...hope you'll let us know how you get on

  • Please don't apologise. I appreciate every sentence. Well done for getting through the years so successfully, keeping mind and spirit together. I am stoical but sometimes wonder if my supply will simply run dry! I will list all your info and take it to my next appointment in the hope something might trigger answers. Thank you so much.

  • You're v welcome

    I know that 'simply run dry' of stoicism supply feeling vvvvvv well.....but, yes, we can do this, especially with the solidarity here on forum

    I feel I should add that the wonderful highly lupus experienced brilliant rheumatology clinic (that has turned my life around) also thought it unlikely SLE contributed to my spine & hip pain. So I actually decided to not challenge this opinion.....hoping time would prove whether the clinic was right: so I spent my first 2 years in lupus treatment on daily hydroxy which did help lots of my lupus symptoms inc any lingering remnants of my upper spine pain, but hardly helped my lower spine & hips much at all...., then last year when pred tapers & then daily myco were added to my treatment plan, hey presto, my lower spine & hips pain settled dramatically & if rheumatology ever tell me again that my version of lupus hasn't been involved in my lower spine & hip pain....well, I'll smile and think: if you say so!

    Take care & good luck

  • Yep. Constant hip bone pain, clicky hips and burning pain in hips. It seems to be when my lupus flares that is the first area to hit, then the fingers, ankles and so on. Unfortunately for me during that time I take short doses of prednisone. Im 41 & feel 141 sometimes. I too have a very limited natural unprocessed diet and it has helped. Sorry I cant give any advice, just know you are not alone!!

  • Thanks ss, fellow clicker! More reassurance that lupus isn't just 'aches' but actual pain. I hope they figure out a more permanent and side effect free solution to the hip pain soon. All the best And thank you for your input.

  • Medicine is such an inexact science, it just baffles me that Drs. are thought to be wizards about everything, & their opinions are absolute. They don't know everything, and maybe one out of ten will go "off book" to spend the time to listen and do some detective work, despite the rigid diagnostic structures they have.

    I too had the same kinds of problems w/ hip & lower back, coinciding w/ feeling awful w/ lupus symptoms. Determined, I kept pushing for some kind of diag. testing until an MRI showed a tear and bulge in a disk. I'm now getting physical therapy, acupuncture, and the wonderful tens unit is a total lifesaver for me. I still have to modify lifestyle greatly till it heals but no longer feel like an old lady before it's time to actually be one!

    Keep pressing on, "doctor shop" till you find someone to listen to you.

  • Thank you Maresy. I'm deffo getting a Tens machine then - always wondered but blinded by the display at Boots full of blue light therapy vests and God knows what else. My MRI is next week and armed with the info on this thread including your disc tear and bulge which I will add to the list, I can beat a path to a diagnosis.

  • When I read your post I could fully understand you I have many symptoms of Lupus sores in the nose, rash on my face, painful joints, bruise when I go out in the sun the list is endless.

    I also have pain to my lower back and right hip in which I have a tear I have steroid injections in hospital for my back but I didn't know that back and hip pain was a symptom of Lupus.

    I hope you get things sorted soon being unable to run around and do normal things is no joy

  • Thank you very much for that Onamission. Really appreciate your post. Good luck too!

  • The thing is they constantly bang the drum that steroids are bad. Switch to something different but I had my first back problems before lupus and steroids, and these days its usually when they are tapering my steroids that everything kicks off. I know the routine but the docs havent twigged yet.

  • I can relate....I get an inflamed sacroiliac joint which affects my hip/pelvis/groin and down my legs. My diagnosis is UCTD and inflammatory arthritis. So although I have the symptoms of lupus Im not fully diagnosed yet. Also lupus and RA can affect this area it so you are knowledgeable at your next rheumatology appointment.

  • Thanks a lot mstr, I will do that. Wonder if inflamed sacroiliac joint will show up on an MRI?

  • I'm not sure if it will. Worth asking about. Take care.

  • And if anyone's reading this, I got a diagnosis of cutaneous Lupus AND Ankylosing spondylitis. At the same time! I feel a bizarre triumph like I'm announcing the arrival of twins. Only they've got horns and are completely unloveable. Ah well, I'm managing. They might be evil, horned twins but they're MY evil horned twins

  • Oh you poor thing you have been through the mill and back! I am 54 now having had lupus for 20 years it was a tough road to start and I also went to The Looise Cootes clinic in London. But only for a short while. I do think you have the right to ask on the NHS to see a different doctor if you so wish but you may have to wait a while. I live in Haywards Heath and see a Rheumatologist down here who looks after me ok. I'm also under many other consultants because as you have seen lupus can go anywhere in the body so if you have a stomach problem for example you would see a gastroenterologist .....

    I have moved around various consultants in order to find the right one but please don't despair there are many people out there who can help you and it's really tough trying to sort it out whilst you are feeling so poorly ! I have found my regular GP to be most helpful with referring me to the relevant specialist who can help me . So I would recommend that you could try this route if you have a good doctor? But I 'm afraid I am on a cocktail of medications ,also but I have regular blood tests to check everything and I am a lowest dose possible.Obviously I do like having to take them ,but it all happened very quickly with me being so ill so at the time I was injected with high Steriods of which I am now not doing ,so things can get better ....

    I also am dairy and gluten free so you are not alone.I also do not drink any alcohol at all . But I have a very supportive family and husband so I know I am very lucky.

    Lupus is a condition one has to learn to adapt to , and I still feel everyday to be a struggle , but having said that I do have a good quality of life because I have had to make myself find an inner strength inside of me to be positive.It is incredibly difficult but I know you will get there keep researching for doctors learn as much as can about your condition sensibly in order to help yourself. Rest up inbetween gentle exercise if u can ? But please don't give up there is always a light at the end of the tunnel and you will get there!! I wish you good luck!

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