I had to be helped out of bed this morning with severe low back pain and stiffness. X-Rays have shown arthritic deterioration in my lower spine. That pain went off as I got moving. It was severe enough for me to post about it though. I am currently on 6 mgs with some breakthrough PMR pain ( diagnosed March 2016). My Adrenal glands are underperforming and I have the subsequent fatigue.
Severe low back pain upon waking.: I had to be... - PMRGCAuk
Severe low back pain upon waking.
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SheffieldJane
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Sorry to hear you are feeling so rough today. Do you need to go back up or are you going to rough it and see how you go? Take care whatever you decide. Debby
I have had a rotten week - like we do. Not helped by my sanctuary being surrounded by scaffolding and nowhere to hide without a man looming at the window, haven’t really gone out as they need access to electricity and builders tea. Perhaps the lack of walking has upset my back?
It could be as simple as that but don’t go doing anything silly just to prove a point. Just take it easy and see what happens in the next couple of days. Debbyx
My back has always given me problems and it's much worse when things get chaotic. Like this week, when my boiler has packed up and I'm frantically trying to get a new one installed, I'm hobbling about like a witch from a Disney film.
Do hope yours gets better soon or you can get some treatment and relief quickly.
Yes!! It really could even though it sounds unlikely. The muscles might have gone into spasm. Xxx
Oh SJ, bummer! What do they do about arthritic deterioration in the lower spine? I'm so sorry. 😕
SheffieldJane in reply to
Nothing really. It only troubles me if I am on my feet for a long time - usually. How is your poor knee? I hope the procedure goes well on Monday - don’t look. 🙄
Not a lot!
O that must be a very unpleasant awakening that is if you even slept tonight. It sounds like a lot of stress you have been through last week. Is there anything that you can do to give yourself a treat, it might help. Hopefully you will feel better soon
Sorry you are in pain! Having builders around is very stressful that won't be helping at all. I see that despite being in pain yourself you have still managed to support others that post, you are a wonder. When I feel bad I only manage to read not reply. Take care of yourself you are needed here.
It helps to concentrate on others. Thoroughly bored with myself. X
It is difficult to stave off boredom when you can’t move very well, isn’t it? I used to love knitting, but can’t do it now because of arthritis in wrists and fngers. Can’t read all the time or, heaven forbid, watch tv. So good we have this forum so that we can interact with “real” people.
Keep your pecker up. You’re among friends.
Thanks!
Off topic! ......
Is “keep your pecker up” a British saying?
My dad, (WW II), generation used it a lot. He was in England and France in the war, but maybe it’s a generational thing. Always been curious about this motto!
Yes it is. I always thought it meant keep your head up - just an encouraging way of saying cheer up.
Hope your back pain goes away soon and this week will be a better one. 🌻🌸🌼🌹
Yes! It isn't the same meaning in the USA though - beware!!!!
en.wiktionary.org/wiki/keep...
😂 What can you mean?
I've heard Americans refer to the 'backside' of buildings and can't really type the word they use for what we know as our backsides. It rhymes with granny 
So sorry you're in such discomfort Jane. Hope this nonsense cheers you up a bit.
😂😂😂 Oooooh dear! Where did you pick that one up?
The question was asked - I answered it. Linguists find all sorts of strange stuff... 
Yes, found this out in an embarrassing conversation with American friends. We really understood what stunned silence meant then!
Many years ago my then approx 6 year old daughter requested a rubber during an art project at the Sunday School at the church we attended in Germany. She was dragged out and brought to the superintendant. Luckily she was aware of the vagaries of the English language and explained! It was a church on the local US base...
in reply to PMRpro
Trust you, only kidding 🤣
I know, would't it be nice to just be able to do what you want to do not what you can do. There are so many people on here in a worse state than me that reading posts makes me grateful for what I can do.
I seem to remember Wonder Woman (the original one) wore a wide belt, she probably had a bad back too.
Ha ha! Perhaps we all should try that.😂😂
I doubt they make them in my size!
So sorry to hear that, Ive been having the same pain, yep,,its true.. I'm preparing an update on my journey but I'll tell you that I accompanied my daughter to get a dexa scan (it had been one year post her hysterectomy). The technician is a friend of mine, she asked me had a had a dexa scan after I fractured my pelvis, said, " no". She then offered to do the scan in me right then and there as she had done the previous two. It turns out that I have severe osteoporosis in my hips and osteopenia on my spine. I didn't think osteoporosis causes pain but apparently it can. I was shocked to hear about the fast decline in bone density.. Have you had a dexa scan lately?
PS. Gaijin. What a shock! I am sure childbirth does us irreparable harm ( those barbaric stirrups).
Do you mean to tell me no-one ordered a dexascan after your pelvic fractures??????
Nope...all they did was get excited about getting me off the pred which I had been on for 2 weeks at the most... That's when I changed rheumies, and was without a GP or rheumi till I got the appointment with the new rheumi... Remember? You were my PMR mentor.. I dont blame any doctors In particular, for all the malpractice, it was all due to my OH's cognitive impairment that I was only starting to suspect. Now I'm in the process of getting a definitive diagnosis of Primary Hyperparathyroidism and surgery to correct it. It was surprising how similar the symptoms are for PMR and PHPT, both even cause raised interleukin-6 which is maybe why I felt so well at the start of Actemra treatment.
Sorry for going off topic on SheffieldJane's thread... I will write a thread of my own after I see the Endo..
I have Gaijin a few weeks ago. They brushed over the fact that it was still good and launched into a promotion of Alendronic Acid. The first one 2 years ago, I was told that I had the bones of a 30 year old. News from a healer rather than a drug pusher.
My T score went from - 1.5 to - 3.2 in two years...GP is trying to pin it on the prednisone! Clueless!
Hope your back feels better soon.
To be fair Gajin, the pred won't have helped but there will be other factors for that speed of deterioration. Like pituitary problems?????
Im almost 100% sure that I had primary hyperparathyroidism back when I had the pelvic insufficiency fracture (2 weeks after starting pred) my OH and the first rheumi both wanted to take me off the pred immediately... I see the endo on Thursday, no expectations... It I'll report back. Somewhere I read a patient testimony, she had been treated for PMR for one year and it turned out to be hyperparathyroidism...i would beat her by a whole year..
Sorry to hear that Jane. You are having a rough patch of further!
Can understand the stress of the scaffolding & builders. I don't like that sort of invasion either, even if they are a good lot! Walking certainly helps my back. Sitting too long is bad news for me. Hope it eases for you. You make such a fine contribution to this forum.
Sorry to hear you’re got it! There’s little to be done except to keep moving and it wouldn’t hurt to see a physio for some gentle appropriate exercises. They can be useful in times particularly when you can’t get out walking. I am going through the same, some days worse than others and Rheumie have referred me to see specialist physio as others have been hit and miss with getting the right exercises for me. If you can walk indoors a little at a time throughout the day, it does eventually help but don’t push it. Playing teasmaid doesn’t help you relax either. Hope you feel better soon you’ve got visitors soon! again like me, - take it the work is in preparation for them coming. It’s taking me endless list making to get through my chores in readiness. I’m sure we’ll have a good time regardless. X
I have bought and wrapped all the Christmas presents for them, planned menus and already made up the spare beds with brand new bed linen. If real trees didn’t die, I’d have them up. Fairy lights are creeping in everywhere. OH ( always on another planet) is having the guttering and pointing done. A new back gate and the outside windows painted.
Today, heralded by the back pain, I feel like I’ve got flu - everything hurts. I had the flu jab over a week ago - surely it can’t be a reaction - I did have the tail end of a chest infection. I have not done anything heavy this past week.
There has been stress from the other grandparents, who are so hurt by the Australia plans that they are threatening to cancel Christmas and go abroad. I understand how they feel , but it’s pointless.
Me too with the beds. You are totally organised, your g/children are younger than mine and I find them easier to buy for but at 17 and 20 they prefer to buy for themselves now. Suits me, I always buy something to wrap as a surprise. They'll get there nails and eyebrows done twice while they're here. They'll be 21 in March and 18 in May (and we won't be there) so would like them to choose something from us while they're here. NOT like when Rebecca was 18 and we sent money saying buy something as a keepsake - she was delighted to tell me she had a tattoo!! We are going to London for 3 nights and the girls want to go to Paris too.... Katie has just finished college and the photo of her at the proms on Friday.... I didn't recognise her - they all dress up as if it's a wedding - so beautiful she looked.
Think you'll find it's the flu jab making you feel crook....that accentuated my weak spots and sounds like it could have made your back feel more painful - perhaps a little me time is on the cards before they get here to give you the best chance of recovery - at least we haven't got too cold weather to contend with - yet....
Shame someone has to be put out re family gatherings.....but it happens.
I took the plunge and took 5 mgs. The pain has gone but you don’t really get wellness, ears are ringing and I keep sneezing, violently. It’s like you exchange one horrible set of symptoms for another. I enjoyed reading about your lovelies. I guess a tattoo is kind of a forever keepsake 😉. If you get a chance post a pic of the prom queen.
Hope you feel better soon, we know it's swings and roundabouts this game but it gets a bit wearing sometimes...Will try to post photo - they will be third hand as I took a screen shot off Beck's FB page - you'll see the writing across the top but still worth having.
Oh for sure! X
in reply to SheffieldJane
You’re well organised Jane, which l always think is just as well with PMR, l’m suppose to be checking out what l can eat for breakfast tomorrow - no toast! Last glass of wine with dinner tonight, thought it might give this fatty liver a bit of a kick start!
Hope you feel better tomorrow, off to research breakfast! xx
SheffieldJane in reply to
Porridge and blueberries. Mind you, I do like it made with milk. Surely you can have Calcium rich full cream milk? The body loves oats - mine does anyway.
Wish I could eat oats...get severe nausea, have been told not celiac, but gluten intolerant, must be something to do with it....
Know what you mean about ringing in the ears!...hope it all eases soon...
Lovely mild sunny day here, makes us feel a tiny bit better...
Thank you Pepperdoggie that, means a lot coming from you. That reminds me, must cut off my diseased leaves!
PMRproAmbassador
Must be the time of year - I had a nasty dose last week! Spent a couple of days sitting on the sofa with a hottie across the place - once I was moving it was better but the heat and sitting upright was essential. Mind you - I am in the middle of a proper flare and back to 15mg...
My God, does it never end!
Hope you're carrying out all your own good advice.
You mean about taking the amount of pred I need? Of course!
But most of the need for the pred at present is to prevent daily extended episodes of atrial fibrillation - almost certainly due to the autoimmune part of PMR in the first place and becomingly increasingly obvious it is associated with the systemic part of PMR (I quote my cardiologist this week). Vasculitis can be a trigger for a/f. She can't offer anything else for the a/f - if pred works, use it...
It first became apparent in the spring when I was trying to reduce the pred to 7mg. At 7mg I was knackered and having frequent a/f episodes. At 8mg I was far less knackered (adrenals they cried) but the a/f was also far less - and at 9mg was gone. So I went back to 9mg. The rheumy just looked confused and denied all understanding of cardiology... Then while we were on holiday near Lake Garda I became aware my quads were SO sore - like having flu. And then my wrists were painful (sure sign of a flare for me) and then the hip joints joined in. So I went up a bit more - and a bit more when the a/f joined in the fun again.
It'll go on for a few months and then fade away again if previous similar but different episodes are anything to go by. And then I will be able to reduce the pred again.
Wow.. PMRpro... I didn't know you had had a flare... Hope its a brief one.. 😘
You have my sympathy PMRPro that must be miserable . Your hottie sounds good. Deeply in denial, I am eyeing my Pred. It is so unfair! A chest infection and the whole edifice collapses. 😡
I have an electric heat pad to wrap round my back...wonderful, does help. Have scoliosos, so live with a certain amount of back pain all the time, but some days really gets to me....when like you other problems kick in, then it seems to tip me over the edge, like you say, you get bored with youself...hope it eases for you soon.......such a battle some days......
Keep us posted.....
It seems to have tipped me into something unpleasant. Heat is helpful but I get so hot so quickly. Thanks for posting. Everyone is being so kind. I didn’t know I’d be the only show in town today. Wish it was more cheerful.
Are you sure this isn't a flare? You have all the scenario for one - and the symptoms too.
I think it might be my first flare. 1 mg hasn’t touched it. It laughs in the face of painkillers. I hurt everywhere. How high would you go PMRPro, from 6 mgs?
I would add at least 5mg - if that works no need to go higher. For a week at least...
I will do that with a heavy heart, since you are better than any doctor I’ve been confronted with. Thanks as ever. I hope your flare is short lived, This blasted disease!
It may be the stress - don't be downhearted. You are already struggling with the low dose/adrenal stuff. That happened to me before the last flare and I got back to 7mg without PMR problems - and now have flared again. This is worse and different.
We are all different. In all respects - this morning I positively encouraged my daughter to migrate. We did it and experienced an awful reaction from my mother that still hurts. But now you need to be well and happy to greet them for Christmas. You need more pred.
Sounds like some serious research needs to be done into PMR and how/why it is so different for all of us. You and Jane would be perfect research candidates. If one day they discover what causes PMR, perhaps that would unlock a cure.
It was only Italy. When I retired ( early) after being a full time working mum. I thought right I can be totally there for you and your children now. They all cleared off to the other side of the World. I still have my son, but he’s a different sort of worry. Bright with a good degree but lacking in direction and motivation, so his presence though welcome, is laced with guilt because he needs to get on his path.
PS. Thanks for your advice yesterday and making me see that it was a flare. The pain went within a couple of hours but I remained wide awake, all night. Less pain today. How long should I stay on a higher dose and do you think I’d get away with say 8 mgs?
Do you think the sneezing and coughing fits were an allergic reaction to the Pred.?
I have sneezing and coughing episodes with PMR, quite a few others have mentioned it too. And mine are worse with a flare!
What did you try? 10mg? Stick there until you feel GOOD, not just OK. And then try 9mg. Remember they will be here really quite soon and it will be big stress - excitement is stress too. This isn't a race, ever. And if you flare properly you will have to go even higher - and I know you really don't want that, do you?
It was Germany at the time - and 35 years ago. So had a mother who hated the Germans (she thought, had never met any and when she did finally come she fell in love with both Germany and Germans! And they saved her life but that is another story) and had not been abroad before. So it wasn't the physical distance as much as the mental one. She didn't speak directly to me for 3 weeks and we were there every day. It was my fault my husband had a fantastic opportunity to go back to science and he was desperate to take it - we were likely to have to move soon anyway as his job at the time was coming to an end. She was so bitter I fully expected to be left out of the will.
Thank you for your good advice which I will follow. Painfree but rather irritable.
Jen’s husband is doing very well as a GP in a beautiful,rural
,market,town,called Bellingen. The pay and terms and conditions are far superior to the U.K. He surfs before work every morning. He used to be stressed. Different bloke now. They live practically on the beach, minutes from her sister, my eldest.
When my OH retires we might do 3 month visits and avoid the U.K. winters. Jen wants us to come on an aging parents ticket and live there. I love Europe though.
I've been past the end of the road!! I'd be there like a shot for the European winter...
Ironically they are keen snowboarders. A house swop would really tick all the boxes, unless they left the boys behind.
Winter really does hurt us doesn’t it?
No - I'll pass on the boys! Oz does have snow...
Sympathies++
I don't often post, but I read all of yours, Jane. I'm sorry to hear about your back, but that is how my PMR started almost 5 years ago. At first the PMR was addressed and my back ignored until one day, after carrying a heavy vacuum cleaner, it got much worse, sciatic pain all down my leg and I couldn't put weight on my foot. An MRI scan showed a ruptured slipped disc. Did that cause the PMR or vice versa? We will never know. Things improved and then two years later, I was down to 2.5 mg and the same happened again. This time it manifested itself in an acute pain on getting out of bed and me ending up on the floor. I had to have propped up pillows for weeks after that. A second MRI scan showed another swollen disc, next level up my spine, and further degeneration. However, my GP says that the degeneration is in line with my age, regardless of the PMR. I am an active person - 71 and have been clog dancing since childhood. The neurosurgeon said as my body is well used to it, it is still safe for me to continue this and, strangely, it doesn't cause any pain. My worse pain is on sitting for any length of time, but the extreme episodes only seem to happen when I drop the pred too low. I am at 4.5 mg at the moment and comfortable. There is obviously a link between the autoimmune and lower back problems, but no-one seems to be able to explain which one causes which. Onwards and upwards as they say and I hope you feel better soon. Jen
I love that you do clog dancing! It is such a cheering thought!
Hope you get to feeling better soon. Good luck and best wishes.
Hi Jane
Only just picked up on this 🌺
Sorry you’re feeling so bad, do you take anything for your back pain when it’s bad? Do you think it’s time to consider going back to 7mg at least, as it might help you feel less fatigued & think about some pain Meds to help ease it, if only a little. I think November is a bad month all round, my knees hate it!
Hope you feel a bit/a lot better tomorrow.
Love Angela 🌺
SheffieldJane in reply to
Thanks for the love, laughs and distractions everyone and the dose advice Eileen!
God Jane. It is never-ending isn't it. I am going away for 3 weeks on Thursday to S E Asia with husband and family. I am actually dreading it a bit as i am always so tired. Just the thought of packing is ghastly. Went on a wonderful garden trip yesterday to most wonderful country gardens. Came home and went to bed. Anyway new bathroom is being put in while we are away so I feel for you not b being able to escape the builders.
Hope your back improves very soon. Best wishes, Cheryle
in reply to Cheshy72
Hi Cheshy
Hope you’ve recovered from your trip yesterday, take it easy today.
Re your packing, start now & do a bit each day so then you’ll be ready incase anything crops up. I always do this & it works well, regarding my darling husbands packing, we do it over a couple of days, l stay in bed, issue instructions, get him to try things on if necessary, then fold & pack them while he’s out, it’s so less stressful!
Hope you have an amazing time, pace yourself & if you need a nap in the afternoon, just factor it in to your day.
Best Wishes
MrsN
Cheshy72 in reply to
Thanks for the good advice. I think I will start packing tomorrow. Luckily most of my clothes are mix and match so should be okay. Husband has already packed and I have no idea what he has included and I don’t care. The main thing is packing light. X
Bathrooms are the pits. We organised a new bathroom to be fitted whilst we went to Australia, we came home to a building site after a 23 hour flight. There is something slightly wrong with everything they did! Out of business now, no wonder.
I pack on paper first. Think of everything we will need clothes for and decide exactly what to take down to numbers of underwear. This is a useful document for packing at the other end and insurance if you lose your bags.
You’ll be glad you went just stake your claim to time for yourself at the outset. Have a lovely time with all the exotic sights ,sounds and smells. Have a magical time.
I have the same back problem. I find the Pilates back exercises help a lot. Are you still confined to barracks?
Hope you will feel brighter & in less pain as the week goes on - even if it is Pred assisted. Best Wishes to you, Jane - Kathy xxx
Jane, hope you feel better soon. You are always such a comfort to everyone else, despite your own discomfort. I'm battling a flare too at the moment. Been on 5 mg for months, now on 9 mg to see how I go!! Sending warm hugs to you x😃
The extra 5 mgs banished the pain but I found myself awake all night, feeling ok but with violent coughing and sneezing fits. The pain is less today, I seem to have lost my voice. Not sure what to do about extra Pred, perhaps 5 mgs was too much, I was so wired. Good luck to you too and warm hugs back.
Xxx🌺🌺🌺🌻🌻🌻🌹🌹🌹
Feel better. You have my empathy and admiration. Xx
Morning Jane. I’ve got the same problem. Find it gets worse the lower the dose of pred and if I don’t go for my daily walk. Sorry to hear you’ve had a bad week. Hope this one is better. 🌸🌸
It has to be! It is partly the unveiling of old pains/ conditions I guess. I look after myself for long spells regarding diet and exercise, then it all goes to pot for a bit. Back on the treadmill!
Hi Sheffield Jane, I am originally from Sheffield, would love to move back. Anyway, I have GCA not PMR but when I was first diagnosed I had terrible back pain and a scan showed arthritis. I had a great Rheumy who prescribed 6 free Pilates sessions at the hospital to see if I could do it. I now do Pilates 3 times a week (of course there is a cost but mine is quite cheap). My back is the only part of me that does not hurt, even on waking I have pain in my arms and legs but not my back, my spine has also stretched half an inch which I believe helps with the pain. If you can manage it I cannot recommend Pilates enough. (I often don't feel like going but I get so stiff if I miss for a week).
Where are you now? Your Rheumie sounds a bit special. Is the rest of your pain PMR related? I think we can expect better relief than you describe. What’s your dose again?
So sorry about your back. I have spinal Stenosis...PT. Dr. suggests water aerobics, rowing and bike. All things I dislike. Next step is an epidural. I thought that was for having a baby!
Feel better! My therapist uses ice for inflammation in my back. Heat feels better.
So sorry Jane that you are going through all of this - you are always so good at giving advice and encouragement to others and all this while you were battling yourself. As you say though often it helps to concentrate on others problems - it takes it off yourself. You sound as if you have been extra efficient getting e etything ready for Christmas. But with that, coupled with your emotional/ sad news re the family, the invasion of your privacy, and to top it all your flu jab- no wonder your body may be protesting. I always feel November is a very difficult month with everyone catching coughs and colds and passing them on to us. I caught a cold a week ago, this seems to be developing into a chest infection and my cataract operation was due this week! Looks like it will have to be cancelled and have to wait another month when he operates again! Meanwhile continue to be a hermit to keep away from large groups and anyone carrying anything! It is a hard job this GCAPMR marlarky but we will get through it. I hope you will be able to get on the right dose of pred that is going to help you but not leave you wired and that soon your back problems will subside. Maybe when those workmen go you'll feel a lot better. It is always stressful when you can't find a secluded place to escape to. Good to be able to vent here though isn't it . All the very best xx
Hope you are getting relief at your higher dose today. I went up 1 then later in the day took 5. Felt so much better. The leg pain disappeared. My goal use to be lowest dose possible but I'm afraid it has changed to quality of life. I'm in it for the long haul now. I have retired so don't know really what other changes to add.
I have two children across the country also. Never dreamed they would be 6 hours from me by plane but they live in California so it's a nice place to visit. My daughter and boyfriend are coming for Christmas so I too am getting ready. I am creating a mini snack bar in the guest room similar to what we had on our Mexico vacation. Fun days ahead Jane ❤️
Oh dear, sorry to hear that Jane. Hopefully it is just the lack of walking which is making it worse. Hope you feel better soon. x
Thanks altywhite. PMRPro enabled me to see that there was one of those perfect storms going on for me and that my symptoms heralded my first flare. The severe pain went within 2 hours of taking 5 mgs extra. I was gutted because it had taken me at least a year to get down from 7 mgs. I also can’t sleep now. Onward.
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