Lower back pain

[Matilda21]

I was diagnosed in 2020 with PMR and GCA. Am trying desperately to reduce my steroids as I have steroid induced diabetes. I suffer from severe lower back pain. If I have stood or walked for just a short time I get excruciating pain across the bottom of my back . This is only eased if I sit down. When I do sit down the pain goes immediately. Then again after another couple of minutes walking it returns. Does anyone else experience the same?

[SheffieldJane]

I have severe low back pain whilst standing for a few minutes, fortunately, not whilst walking. My Rheumatologist arranged for an X Ray yesterday to assess any damage. I do think that being relatively sedentary in recent years has worsened things. I was better for 6 weeks in Australia recently, we went out every day unlike here. I will share anything that the X Ray shows up.

[Matilda21 in reply to SheffieldJane]

I have had xrays and they look fine. I was thinking it might just be me.

[PMRpro Ambassador in reply to Matilda21]

x-rays don't show muscle problems.

[Joanbill13 in reply to SheffieldJane]

hoping I feel better when I go in three weeks. My back hurts and top of arms. Two days off pred Hope you had a good time

[PMRpro Ambassador]

I have done - it is due to severe greater trochanteric pain syndrome for me. Pred alone doesn't deal wit it - needs physio and pain relief.

[DorsetLady PMRGCAuk volunteer]

What dose are you on now? Could be as GTPS as PMRpro advises, but if you are on lowish doses it could also be osteoarthritis...so maybe an x-ray might be sensible.

Have you tried painkillers?

[Matilda21 in reply to DorsetLady]

I have just increased my preds to 10mg as I was struggling when I got lower. At 7mg I just couldn't function. I have had xrays and everything looks fine. My shoulders and upper arms are also painful when I raise them eg. drying my hair, folding towels / bedding. I feel like I have just come to a standstill. I can't take a lot of the meds for PMR as I have bronchietasis, emphysema, COPD and angina. I'm currently on Zolendronic acid infusion once a year.

[DorsetLady PMRGCAuk volunteer in reply to Matilda21]

okay-let’s hope the increase to 10mg sorts out your shoulders then….

[Matilda21 in reply to DorsetLady]

Thanks. x

[PMRpro Ambassador in reply to Matilda21]

"I can't take a lot of the meds for PMR "

There aren't any - just pred. The other stuff many take is "just in case" nothing to do with the PMR.

[Grammy80]

I have been a certified GCAer since 2019 and had the same issue...in my case, an MRI showed a pinched nerve. This was me, but like you, I couldn't stand. I had two rounds of injections along my spine to see the effectiveness of pain relief. (much of this in unnecessary procedures required in the states by the insurance companies) After proving releif, I had a nerve ablation in April 2022. I've had no pain since, though I have the doctor told me it can last 6,12, or 18 months. So far, so good. The best 💞

[Uglow in reply to Grammy80]

I want that 😢

[Grammy80 in reply to Uglow]

I was unfamiliar with the procedure, and an orthopedic man mentioned my going to an anesthesiologist to see if I was a candidate. My DIL, in Canada, was quite familiar with it because a school teacher friend of hers who has it annually. It is an x-ray-guided syringe that directs high-frequency radio waves to burn the nerve. The pain only returns when the nerve eventually grows back. It did work for me! 💞

[Mike364]

I have exactly the same lower back pain. Means I even have to sit on the loo after having a shower before I shave. Even showers have to be short. However mine is due to a spinal fusion about 25 years ago which at the time changed my life. I even started fell walking again - but not now! The really annoying thing is after having had a Blue Badge for 3 years it has now been refused because they say PMR only lasts 3 years and the hospital won't x-ray my back every 3 years because they say there is nothing they can do! I really empathise with you - life for me has become somewhat of a burden. I can still use my exercise bike as I am sitting down and in the summer my wife and I use electrically assisted bikes. Mindfulness does help.

[Matilda21 in reply to Mike364]

Thank for your reply. I have a stool in the shower as I can't stand long enough for even a short shower. I have a mobility scooter for my other medical conditions and a walking stick with a drop down seat. I do try to stay positive.

[Mazxstitch]

I have had lower back pain if I stand or walk. However, I was referred to a Physio and have been doing the exercises he has prescribed and I am so much better.

[Uglow in reply to Mazxstitch]

physio seems to be the best with a good physio

[Matilda21 in reply to Mazxstitch]

Thanks for that.

[Uglow]

yes all the time. I do have fragility fractures and I’m not sure if pain comes from that or pmr. Painkillers don’t touch it tho. It’s excruciating until I sit for only say 20 seconds then I can move then a few mins later it starts again. So controlled by it.

[Matilda21 in reply to Uglow]

Thanks for that. I'll mention physio to my GP and consultant.

[Wallysma]

Hi...I have the exact same issue. It is my biggest PMR symptom. I use it as a guide as I reduce my pres dose. The pred helps obviously. So if the pred helps maybe you need to slow the roll on the reduction some. When I did that it helped reduce the spasms. Not gone tho.....yet. One can hope. Take care.

[Matilda21 in reply to Wallysma]

Thanks for your reply. I'll try a very slow reduction of my pred. Hope you soon are spasm free.

[LozzaSandstrom]

Yes I have some disc damage and arthritis in lower back and both hips - but its definitely worse these days.

I have to say I have exactly the same issues now I cannot stand for long and walking is not something I do for pleasure now. I haven't walked the dogs in 2 years the last time it nearly finished me as I have lots of feet pain although these are also very worn apparently.

Plenty of rest and I do use paracetamol and it does help some of the time.

[Matilda21 in reply to LozzaSandstrom]

Thanks for your reply. It certainly does interfere greatly with quality of life. I became a nanna late in life (68) with twin boys. They are 4 now but I can hardly do anything with them. That really saddens me.

[LozzaSandstrom in reply to Matilda21]

I can totally understand that - it is very debilitating and at 57 I seem to be old for my years with how little I can do - its hard not to feel sorry for yourself at times but then I say, pull your big girl knickers up - you are still here - there is worse you can be dealing with and some days for me are better than others.

Fatigue is a big issue for me and being in bed makes the backache worse! I have a stack of books to read, but find my mind is too active to concentrate on them - another side effect of the pred I think. Just try and focus on what you can do. I am a spinner and weaver and sew a lot so much of my stuff is sedentary but I know how you feel I really do xx

[AliDeJ]

Hello. You need to tell your Dr. It sounds very much like I had . Spinal stenosis, spondylolisthesis with spondylosis. Maybe OA changes in your lower back have caused bo e growth to impinge on your spinal column. It's very common as we age. First they will prescribe painkillers, then physio, then an Xray, then an MRI. You will need to jump through the hoops. I hope you get treatment and relief.

[Matilda21 in reply to AliDeJ]

Thanks for your reply.

[MrsNails]

l’ve had a problem with my lower back for a long time, if l tried to make a bed my back will kind of spasm & l have to sit down or preferably relax on the bed against the pillows & it goes.

I’ve been finding of late l can do very little before it happens but sitting down stops it!

Unfortunately, last week for the first time it struck while we were shopping & it was quite awful as there were no chairs close by - it’s something l need to discuss with the GP but it’s difficult to get a routine review only ‘urgent appointments’…….

[Matilda21 in reply to MrsNails]

I have a walking stick that has a seat on it and is great for when I have to sit immediately.

[MrsNails]

Do you have any problems when sitting? I cannot sit without a back on my chair ie l can’t sit on a stool or a bench…..

[Matilda21 in reply to MrsNails]

I'm fine on a seat with no back thankfully.

[PMR2011]

in regards to steroid induced diabetes there is lots of info on here to manage that. Have you reduced or cut out simple carbs altogether? Many have reversed it. I lost weight while on Pred by eliminating bread, potatoes, rice, pasta and sugar/sweets. It didn’t take long before I didn’t miss those things. By cutting out those foods it also helps reduce inflammation which helps the autoimmune diseases too!

[Matilda21 in reply to PMR2011]

I've cut out a lot of carbs but maybe not enough.

[PMRpro Ambassador in reply to Matilda21]

What about fruit? That is a common problem - people think they are eating low carb and healthy but lots of carbs hide in some fruit!

[Matilda21 in reply to PMRpro]

I'm being careful which fruit I eat.

[PMRpro Ambassador in reply to Matilda21]

What DO you eat? Anything other than berries soon mounts up - and even they do if you eat a lot!

[Matilda21 in reply to PMRpro]

Lots of chicken and fish. Chicken stews with lots of veg. Fillet steak. Lots of salad and fruit such as apples, pears, strawberries, blue berries and bananas though I know bananas aren't as good as the others but I do like them.

[PMRpro Ambassador in reply to Matilda21]

It was the fruit I meant. And your choice could well be a problem. Apples, pears and bananas above all have quite a bit of carbohydrate in them - I was watching a medical article on German TV last week that showed them as cubes of sugar - I think the banana was about 27!

Snazzy and I know we won't lose weight until we are down to about 20g carbs a day. That is less than the carbs in a banana, and not a lot more than in an apple or pear, one of each takes us well over the limit. Grapes are little sugar bombs too!

dietdoctor.com/low-carb/fruits

[Matilda21 in reply to PMRpro]

There's me thinking I was eating the right fruit !

[PMRpro Ambassador in reply to Matilda21]

You aren't alone - and it isn't easy unless you know facts and figures. That lnk I gave you is a really good one - no nonsense and reliable information. And that makes it easier to know the best choices. There are no right or wrong ones - just better ones. You get to choose what to have - and what needs you to give something up to compensate.

[LozzaSandstrom in reply to PMR2011]

I am really going to try and reduce my carbs but I find it hard and I was overweight to begin with but from today I am trying. Just as a matter of interest is wine bad for diabetes - i like a gin and tonic but wine is my poison as in I drink too much of it and would help weight loss I am sure

[DorsetLady PMRGCAuk volunteer in reply to LozzaSandstrom]

Have a look at this -diabetes.co.uk/alcohol-and-...

[LozzaSandstrom in reply to DorsetLady]

Thanks

x

[PMRpro Ambassador in reply to LozzaSandstrom]

Depends a bit on the wine - the drier they are the less residual sugar is in them. I Germany they even label wines suitable for diabetics!

[LozzaSandstrom in reply to PMRpro]

Sounds good I am a red wine drinker only

[PMR2011 in reply to LozzaSandstrom]

So aim for reducing (3 glasses of wine a week instead of 5 for instance). As you lose weight and you feel better and your blood sugars improve it gets easier. I started with cutting out toast at breakfast. I have 2 eggs almost every morning and still have lost weight. Believe it or not a bed of spinach is a great substitute for bread or pasta!

[HeronNS]

Long before PMR I had on and off back problems, and eventually ended up with a little portfolio of physiotherapist-prescribed exercises. The key, in my case, seems to have been improving core muscles (whatever they are - a nice side effect is a flatter stomach! - and I can say that the back issues are definitely under control although there's always a chance they'll reappear, especially if I neglect my exercises for too long. The problem with being on pred for PMR/GCA is the tendency for pred to cause some muscle weakening and make one more prone to injury, let alone the loss of overall fitness caused by lack of exercise because of PMR pain. A good physiotherapist will provide, initially, very simple, boring exercises which seem like they can't possibly be doing anything useful. In fact they are strengthening smaller muscles which eventually enables the larger ones to become stronger. Gentle exercise, practised persistently, has been the answer for me, and maybe would help you too.

I should add that it was the increasing inability to perform even the simplest of my physio exercises which prompted me to try one more time in desperation to get a diagnosis for pain and disability. Luckily this time I saw a doctor who I think took one look at me, and how I was walking, and recognised PMR (I'd suffered for over a year).

As for diet, when I started pred I cut out all "white" carbs. Was quite shocked to discover how much wheat I consumed actually! Fortunately I don't have a particularly sweet tooth so maybe it was easier for me to cut back than it might be for the many of us who love sweet treats. Blood sugar did climb, but not quite far enough to cause concern, just something they wanted to keep an eye on.

Hope you find some answers soon. It is tiresome and tiring having to deal with chronic pain of any kind. Good luck!

[PMRpro Ambassador in reply to HeronNS]

physio-pedia.com/Core_Muscles

thetrainingroompt.com/core-...

Unfortunately they don't have a pretty picture! This does though, several ...

shape.com/fitness/tips/what...

[Matilda21 in reply to HeronNS]

Thanks for your reply.