Severe back pain: Hi fellow Lupies, There have been... - LUPUS UK

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Severe back pain

LuluM25 profile image
9 Replies

Hi fellow Lupies, There have been one or two posts about back pain which I was keen to read as I've just, at last, after long standing back problems for around 20 years, had some real investigation done.

However, my main problem, spondylolistheses, has not been mentioned. This is a condition where the vertebrae move and cause curvature of the spine, significant pain and difficulty in moving/walking. I'm 71 with multiple lupus related conditions so I've already been told that surgery would probably not be done.

Does anyone else have this condition? I'd be interested to know about worsening future pain and how my movement might be impacted further, as well as any therapy that has really helped. I'm currently waiting for hands on physio and am taking amitriptyline and paracetamol for the pain as well as my other medication for Lupus etc.

Wishing everyone a very happy Christmas 🎄 🎄

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LuluM25
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9 Replies
Chris21 profile image
Chris21

Happy Christmas to you luluM25,

Sorry I don’t know the answer to your question as I don’t have the same condition. However I do have lots bulging vertebra’s with no fluid/gel in between which means the bones rub together and I have to be careful how I move so as not to get sharp pain. I found physio very helpful showed which movements I could do to help stretch spine without causing damage and hands on therapy for me, is a bit like a massage/manipulation which gives me some relief. Amongst the many pills and potions, I take a low dose of pregabalin as having sjogrens, amitriptyline dries my mouth too much.

I hope physio helps you as much as it has me 😊

LuluM25 profile image
LuluM25 in reply toChris21

Thank you Chris. Your comments about physio have given some hope that it may help me to become more mobile again. I also have Sjogrens and find my mouth is much drier now I'm taking amitriptyline. Hadn't connected that symptom to the new medication until you mentioned it. I'll speak to GP in new year about that. 😊

Graystar profile image
Graystar in reply toLuluM25

Hi Lulu25, I have Degenerative disc disease and an old spinal injury. Physio will help you as will trying to manage tasks particularly those where you need to bend or stand neither of which I can do for very long. I don’t take pain meds anymore they only helped me briefly and Amitriptyline just caused issues with my gut. So now I use a TENs machine, a back brace and a heat pad. Heat really helps me, the TENs machine is good for moderate pain and the back brace helps me during tasks. None of them stop the pain but all of them used separately help me manage the pain better. I do some decompression exercises that I’ve been shown by the PT and some yoga stretches. The best exercise for me though is swimming. I do this as I can no longer walk far. I hope this helps you in some way and if you can get into a bath still that works wonders for me too.

LuluM25 profile image
LuluM25 in reply toGraystar

Hi Graystar, Thank you for your helpful reply. I did buy a heat pad but have yet to use it so will definitely do that now. I have read about TENS for pain and the possibility of a back brace. I'll speak to my first line physio in the new year about those and hopefully see the hands on physios. It seems both you and Chris21 have found ways to relieve the pain a little to allow a bit more movement. I had to laugh at your 'Bath' recommendation as I would dearly love to but a couple of months ago had to be rescued by my daughter as I couldn't get out of the bath 😆. The bath is now a 'no go' area!! 😊

Graystar profile image
Graystar in reply toLuluM25

Oh dear 😅 I’m sorry about that suggestion then! With the back brace I must admit I put off having one for decades as it can weaken the back muscles, so I only wear it when I’m doing physical activities like steam mopping the floors or bending to clean the bathrooms. The heat from the pad is great but the TENs machine only works on moderate pain for me. The PT will help you immensely as they also give you exercises to do at home. I use an electric wheelchair now for days out as I really can’t walk or stand for long. At home I have a bar stool to sit on for cooking. The only other option for me is surgery now and I’m reluctant to go down that road. I hope you find more things that help you!

Dollyw profile image
Dollyw

hi I’ve got lupus, multiple bulging discs and spondylitis and arthritis in the spine. My spine is sore and very painful some days . I was on amatriptlyne but had to stop taking because of side effects. I can only do shorts walks now and I do get brain fog due to bulging discs in neck. I’m 66 now and have had to take things alot more slowly. Thankful I’m still mobile but much slower. Interesting that other people suffer with this as well as Lupus. Best wishes to you all and a Merry Christmas and a Hapoy New Year xx

LuluM25 profile image
LuluM25 in reply toDollyw

Hi Dollyw, I think the disc/vertebrae problems come about because of medication, inflammation and sometimes hereditary. First sign for me was painful lumbar area many years ago and at that time my 'hands on' physio said the facet joints were inflamed. And it progressed from there ......

Bulging discs in your neck must be very sore. So far my lumbar and thoracic vertebrae are affected. The constant pain is draining and restricted mobility very annoying. I'm like you I could still walk a bit with a stick but recently the ache at the base of my spine means I cannot stand for long.

Can you tell me the side effects from amitriptyline that you suffered? I've been taking for about 3 weeks at 2 tablets per night and apart from sleepiness and dry mouth have no other side effects.

Thanks for your reply 😊

Dollyw profile image
Dollyw in reply toLuluM25

Hi Lulu yes I had really bad heart palpitations always waking me up each night. Dangerously high at 180. They did help with the nerve pain though. I find

I can only stand for a short time also sit for a little while , then have to lay down to ease the pain . Good to share our problems Thank you x

Wytchylady profile image
Wytchylady

Hi. I have Spondylitis, collapsed vertebrae, Osteoarthritis and Osteoporosis affecting my spine.

Currently I'm experiencing more problems and pain in my hips and spine than before such that it's considerably reduced my mobility which hadn't been too good as it was.

I've been on Gabapentin previously and that provided some relief but wanted to reduce it until I stopped taking it.

I was also on Baclofen for Dystonia.

Also have Myositis linked to my SLE. I'm not sure if the pain and reducing mobility is to do with Osteoporosis, OA or Lupus.

I'm waiting for an appointment with a physio after a referral from the Rheumatologist and hoping it can help.

X

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