Lulamay7

Hi willow, I put up with back pain keeping me up at night for years, same as you with the xrays etc nothing to see. mri showed 3 heamangiomas but called them incidental. finally broke down in tears on call to gp who prescribed Bupenorphine patch. I'm on my 5th patch now, they last a week and I have slept through the night since the night i put the first patch on. I have been on tramadol since 2017 and etoricoxib since 2018. But they never really stopped the night pain just made me able to get through the working day. Uninterrupted Sleep is such a wonderful thing I hope you get help.

Willow7733 in reply to Lulamay7

I would love some good uninterrupted sleep. I work long hours and it would really be nice to not be so tired all the time.

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EG74

Hi Willow7733, I had back pain problems for near one year in 2019, I couldn’t sleep with the pain or sit down and I used to go to the floor to lay down for a while and do some movements, I first went to see a physiotherapist and the pain reduced but eventually came back even stronger. I had my annual review with a rheumatologist after a year of getting an ANA positive in 2020, at that point I wasn’t diagnosed with lupus and only had previous symptoms with stiff and swollen hands and anaemia. The rheumatologist sent me for an MRI and it showed degeneration on the lumbar back L4-L5. So he said it wasn’t lupus. The Gp only prescribed me with ibuprofen but this was useless so I went back and requested cocodamol. Anyway it took a long time for my back to get better, I took CBD and CBN oil and stop taking cocodamol, I couldn’t do any yoga ( I used to practise yoga a lot). I started doing squats and other exercises to strengthen my lower back. Anyway you need to request an MRI to your Gp or rheumatologist. I eventually was diagnosed with lupus this year after requesting to see a new rheumatologist. I think my lower back pain was exacerbated by lupus but I will never know about it. I think rheumatologist don’t consider lower back pain as a symptom for lupus but many people with lupus have it.

Willow7733 in reply to EG74

I am taking naproxen for pain and to tell the truth, it doesn’t do anything for the back pain or the joint pain. I had a hysterectomy in October, and that is what they prescribed for pain two days after when I went home and it worked - so really, why doesn’t it work for the joint pain I don’t really know! The only thing I can think is that for the operation, I was taking two of the pills every four hours. For the joint pain I only take three per day.

I need sleep. I am so tired trying to explain this pain. Seriously, I have had it for over 30 years. It is crazy.

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Spanielmadlady

I'm prescribed pregablin by my Rheumatologist.hes just increased it at night for leg pain .you've got to speak up and ask for better pain management x

Willow7733

I will have to because enough of this. 3 hours sleep last night again (there is a rain storm coming today, and I always hurt more the night before). Good thing I am on vacation this week.

Krazykat26

Do u use anything topical on your painful bits Willow? 🤗When I have rheumatic pains I use Weleda Arnica Massage Balm which is homeopathic oil that has rosemary and lavender in its ingredients. I'll add a pic of it.A couple of questions for u to consider..is your mattress firm enough? I recently changed my mattress n I've really felt the improvement in my general state in the mornings. Also what's your posture like generally? You have a busy job n it's likely that u spend much of your time bending over..I was a nurse back in my youth 😉I'm tall as well so extra low bending for me!! 😹Some tai chi exercises might help to realign your spine..I'm just thinking out loud here 🤔

Agree with the suggestions about stronger pain relief..I'm prescribed Tramadol which I take when necessary..it's not for everyone apparently but it works for me n helps me get some decent kip.

Best of luck with rheumy appt 💜🌈😽😽xx

Krazykat26 in reply to Krazykat26

Sorry forgot the pic 😹

The massage balm

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Willow7733 in reply to Krazykat26

Yes! My mother has really bad osteoarthritis. So bad, she doesn’t have any kneecaps left. She is 78. She swears by Voltaren. I was sceptical at first, so she gave me a small tube to try…and wow! It is better than nothing.

My mattress is firm but not very hard. I like and sleep better on a softer mattress. I go for a massage once a month (would go more often but my health coverage only pays for so many a year, and now I have to pay out of pocket until next January). My massage therapist told me when I am lying down, she notices that my left hip is raised quite a bit off the table compared to my right. She suggested I see an osteopath. I will have to wait until I get the extra money to go and see what he says. Again, my insurance is maxed out for the year. 🤷‍♀️

I am always on my feet and bending over something, the desk, the patients, the computer. I am training now (happens every spring), and there is very little room for two of us where ever we are working. So, I have to contort myself to help the new employees. I know that can’t be good for me.

One thing I make sure is that I have good sneakers with good cushioning. The floors are cement. The last shift, I had to stand all day - the girl I was training took the whole desk, so I documented standing up. Very hard on the legs and back. 🤷‍♀️

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Ilovepuppies88

Hi willow, so sorry to hear your struggling with sleep and this horrid pain. I am having the same lower back pains they get so serve I can't sleep or even sit at times! Even standing kills. I've been to my gp they have 0 clue. This pain has only been with me for a few months but I can relate its an absolute nightmare. What I found that helps me is ibuprofen with paracetamol seems to settle the pain an hour or so later but I've also noticed when I'm sleeping on two different mattresses makes a difference, one I can sleep and barely feel any pain, the other it's a straight disaster. The mattress definitely makes a difference, mine is medium firm and i think this is definitely to do with lupus! it must be, I've never had these horrid back pains prior to lupus, so many of us experiencing the same lower back pain. Hope u can get some good rest soon x

SWinNorfolk

Hi Willow, that sounds awful and so can sympathise, I struggle with back pain and interrupted sleep. I also, feel like my 2 min phone call with my rheumatologist isn’t very helpful, she just asks me if I think the hydroxychloroquine is working?!?! I’m trying to do 10mins of Pilates back strengthening exercises each morning, I started last weekend and can already feel a bit of a difference. Let me know if you want me to share the YouTube video.

I feel like we have to self advocate so much to not have to live in pain when it comes to Lupus, and it’s not easy to do. But sounds like you need a face to face appointment with a nice dr who will listen to you and help with better pain management. Hope you find something that helps x

Rimsky

My lower back pain is caused by arthritis in my sacroiliac joints. My consultant does link it to my lupus. I’m not sure where on your pelvis you can pinpoint the pain to but if you check a picture of a human Skelton it might help you determine if the sacroiliac joints could be involved.

Willow7733 in reply to Rimsky

It is exactly there. The last disk/vertebrae before the pelvic bone.

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Violet9

I do the exercises in Sarah Key's book 'The Back Sufferer's Bible'. They're the only exercises that have helped. I also went to see a physiotherapist who had trained with Sarah Key, who confirmed exactly what the problem was (which I'd guessed from reading the book). SK is (or was?) Prince Charles' physio. She is Australian so most physios in the UK are not familiar with her methods. The book is very detailed and does take a while to read, but it's worth it. The exercises are at the back of the book but please read the information first and try to see a physio trained by her. SK has a website with lots of useful info and the book is available on Amazon. She's also done a book about joints, which is equally useful. Good luck!

Alida_HorneAdministrator

Hi Willow7733

I’m so sorry to hear that you don’t find your appointments with your Rheumatologist to be helpful.

I attach below a link to a blog article on our website which gives some tips on how to get the best from medical appointments. It also speaks about how to get a referral or second opinion. The mechanics of this will not be relevant in Canada, but I would suggest it may be a good idea to do a little research around what your entitlement is in relation to second opinions etc.

This article is designed to help to give you the confidence to go into a medical appointment prepared with the questions you want to ask, as well as an idea of what you want to get from

the appointment. I have also added a link to our articles on managing pain and fatigue.

lupusuk.org.uk/getting-the-...

lupusuk.org.uk/managing-fat...

lupusuk.org.uk/pain-managem...

I hope you find the information above helpful – and that you manage to get some answers, but if there is anything else I can do to help, do please let me know.

Kind regards

Alida

Willow7733 in reply to Alida_Horne

Omg thank you!

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lowraind

I would suggest getting a referral to a pain management doctor. There are various treatments that can be tried.

Willow7733 in reply to lowraind

They have a pain clinic at the hospital I work in. I never really paid that much attention to it, but it is worth looking into.

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Titters

Hi Willow. A lot of people have given good advice here. I would try for X-ray or MRI because the pain can have many causes with different solutions. And in my own experience and counseling from Doctors it absolutely can be linked to lupus. It sounds like your reply from Rimsky really resonated with you. That would be your SIJoint. My left one acts up and there are specific exercises I do. It can be helpful to have physical therapy as well. It sounds like your hips/back are out of alignment. Hope this helps. 🦋Titters

Willow7733

So I just had my phone appointment with my rheumatologist (every three months he sees me), and he is now saying he thinks it is osteoarthritis in my back. Does that make sense?? He said if it continues to hurt and keep me up, to call the office and that he wants to see me in person next time. Calling my pains in my knees, back, hand, and ankles poly arthritis? Does that make sense?? My inflammatory markers last March were ok. My platelets are high and my hemoglobin is still continuing to drop (even though I had a hysterectomy in October to control the anemia). He is very hard to understand because he is French and has a thick accent, but I think he said something about having some sort of injection?? This was the best and longest conversation we have had!! I was shocked.