Back ache: Hi, I wrote 2 months ago about my back... - PMRGCAuk

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Back ache

Sleepysusie profile image

Hi, I wrote 2 months ago about my back back and how I have trouble walking or even standing at the sink for more than 5 minutes without being in severe pain. Since then I have had numerous phone calls to the Doc, I have been given Naproxen, CoCodomel and Omeprazole. to take every day.I discussed MPS and my PMR with the Doc who doesn't believe it's connected, although I think maybe it is. Had a phone call from physio last week with a list of exercises to do and an appointment to call back in 2 weeks. In the meantime the pain is getting worse. I am signed off work but got So fed up the other day my husband took me to the shops but after 5 minutes I had to sit on a bench while he got the car. I feel like I am banging my head against a brick wall now, the physio asked if I had actually seen the Doc or a Rhuemy and seemed surprised when I said no. But told me to do the exercises and she will call back. So that's what I'm doing. But wondered how much longer this will go on. Sorry about the rant but I'm trying to put a brave face on for family(although my husband sees through that and is doing his best) and am starting to feel a bit sorry for myself. Anyone else had this problem long term xx

37 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

There are so many different things that can cause backache - I can’t really see how physio can give you correct exercises if he hasn’t actually seen you F2F.

I assume GP referred you, but as he hasn’t seen you either, he must have a very good crystal ball!

Not good enough! But I guess you’re stuck at the moment.

Not as bad as yours - but I’ve had bad back for years - sacroiliac (left side) - then arthritis in right hip which was very much like yours until replacement - now lumbar spondylitis, which isn’t too bad.

But my point is, you need to know what’s causing it, to get correct treatment.....lazy answer just to throw painkillers at the problem.

I agree with Dorset Lady. You need someone to check it out, and a referral if necessary. My back pain got so bad, I had an MRI showing severe problems, and I had a lumbar laminectomy in September. Prior to that I had physio which didn't help.

I'm not diagnosing you: just suggesting that not everything is linked to PMR. I really feel for you, back pain that bad is dreadful. I hope you get some help soon.

Hi, thanks for your replies I will remember that edit for next time. I think at the moment I have a bit of brain fog! I did ask if I needed or should have a scan but the physio wants me to try the exercises first so it seems that's what I have to do. They are very gentle stretching exercises. So I think that's the way I have to go and talk to her again when she rings. The Doc actually said he wants to just give me pain killers until the physio decides. It does seem as though I am going round in circles but I guess nothing is easy at the moment. Xx

I believe you have to go down that route: painkillers, physio...until an Xray or MRI is ordered when they don't fix the problem. It's so frustrating. Good luck!

My older sister is exactly like you, and before March had actually paid to see 5 physio in two years!!...getting nowhere, she is now on strong painkilkers. My sister is terrified of hospitals and last week I told her, no-one one knows what they are dealing with till you have a scan!......she is so frustrating......I don't understand it, she like you can't walk around a shop, she sits in the car while her OH does.it....I hope you get help soon. I was seen f2f a month ago in Rheumatology.......it was excellent...keep pushing.....good luck....

You have my sympathy ! Low back is crippled the moment not to mention the legs feel like ive climed a mountain. In a bubble of pain, i know how you feel. If this is a new symptom for you, maybe your gp should at least get an xray ordered for you. Agree with DL. All those painkillers dont seem to be doing anything. Really hope you get something sorted.

PMRpro profile image
PMRproAmbassador

I did - I had a similar problem, couldn't stand or walk for more than 10 mins without severe low back pain and absolutely couldn't do anything that required me to lean forward at all. Standing at the sink is poison! That is still a problem but by avoiding housework and long term pain clinic and physio management it is livable with. Mine is severe sacroilac joint inflammation - responds well to local steroid injections but the pain clinic is reluctant as I'm also on anticoagulant therapy - and is aggravated by piriformis syndrome which makes the muscles tighten and pulls the joint tighter together and that makes it rub. One local private orthopod claimed it was wear and tear in the lower spine and I would have to learn live with it - it wasn't, it was entirely muscular, and our hospital orthopods recognised it when I seized up completely a year or so later. I was admitted for that but one of the drugs they used led to a severe reaction causing atrial fibrillation and they handed me over to the pain clinic for the slow approach. It has taken a long time but I am much better.

Since you have the painkillers you could try taking a flooding dose of ibuprofen (Naproxen is also an NSAID and it MIGHT work) and sit upright in a supportive chair with cushions and a hot water bottle over the place where it hurts. It works for me for an acute episode and made life more comfortable even when it was chronic. It can take a few days. There are no physio exercises that will work when it is acute unless you can manage pirformis stretches which will help over time to release the spasmed muscles.

I found a really good Bowen therapist could help - but never as a "if it hasn't worked in 3 sessions it won't" sort of effect. I needed several goes and then I did Pilates exercises once I could and needed a few Bowen sessions as maintenance every 6 months or so. The NHS isn't geared up to deal with this sort of thing and it is even worse due to Covid. I live in northern Italy - and after a couple of months without, our physios are back to f2f 3/4 hour appointments, all hands-on with homework!

This work

jrheum.org/content/46/12/1552

suggests it IS part of PMR or at least closely related - something I had been told by a German research orthopod some years ago in a science meeting. They are much more aware and accepting of the problem of low back pain and muscle spasm here - I found the UK a nightmare for being taken seriously over back problems. One doctor told me there is nothing wrong with my back, it was my posture. I have a fairly severe scoliosis which even I can see on an x-ray! My posture is because of the back problems, not the other way round.

Chihuahua1 profile image
Chihuahua1 in reply to PMRpro

I was told that my back pain was all in my mind because they couldn't find anything with MRI, xray etc. They did a discolyasis which shoots dye into the discs and discovered I had 2 ruptured discs, which hadn't shown up because they were not out of place. They dissolved the discs and everything settled down. I now have muscular issues there causing the same as you where I can't walk or stand for more than 5 or so minutes.

PMRpro profile image
PMRproAmbassador in reply to Chihuahua1

Yup - far to quick to say if the can't see it on imaging the patient's making it up. Which is downright insulting.

A physiotherapist should watch you at first to see how you're performing the exercises and put you right if she notices anything amiss. (Also, you should stop if you feel any twinges while practicing but from what you say you are in continuous pain).Then, when you go back she should watch you again and so on. It's like someone giving you swimming lessons by email. I'm not being flippant; your pain is so debilitating and you do need a proper investigation. I also understand that face to face appointments are difficult to get at the moment but a bit of pressure on your doctor might, hopefully, see results.

I cannot say my back pain is as bad as yours, mine seems to appear across the middle of my back and hurts when I lay down at night. Think it comes from the shoulders still feeling the effects of some inflammation in shoulders. When I stand in the kitchen I can get to the point where I need to sit down to stop the pain.

I have a Rheumy phone call this week, but not expecting much from that.

Exercises I have been given have made no difference.

Everytime I get undressed I seem to have pins and needles and itching in my middle back needing a good scratch.

Try to avoid taking many painkillers, just Naproxen when I do some longer running races.

I do not hold out much hope of getting face-to-face consulations at the moment unless you are going for a jab!

I also have a lot of back pain with PMR, especially when preparing vegetables or at the kitchen sink etc. When I get undressed I also get a sort of pins and needles, crawling effect on my back, which itches. I have been wondering what causes it, but cannot find any reference anywhere to it.

I think some of my back pain comes from my stomach acid problems, which seemed to be well controlled with Ranitidine. Since that was withdrawn I have not had the same effect from Famotidine.

Yes the sensation on your back sounds the same as mine with no diagnosis.

Ive had lower left si joint pain on and off for years. My advise would be to arrange Xray or MRI is important asap to properly assess the reason for your back pain.In the meantime take the appropriate medication (ibuprofen worked best for me but only for a couple of weeks); avoid bending at sink situations - if you can't bend your knees slightly to take the pressure off; work with physio on core exercises and ask for exercise to work your stbs (muscles/tendons at side of legs - appropriate leg for whichever side back pain is. Make sure you warm the area of back with wheat bag or similar before low dose exercises.

These have helped me over the years and hope some or all of this is useful to you.

Hi Sleepysusie,

Sounds so much like me. I have just finished taking Prednisolone for PMR, which looks as if it is in remission. However, all during the treatment, I had problems with pain in my hips/back/groins, which - it turns out - was not related to my PMR. MRIs have shown that I have arthritis in my lower back and my hips. It has become so bad that I cannot walk a step without the help of a rollator or furniture to lean on. I cannot walk with the help of a cane alone. At first, they thought I would need an operation on my back but, since that does not seem to be causing the pain as much as the right hip, I have been offered hip-replacement surgery. This probably won't take place before March, owing to Covid 19 (I live in Denmark). I do not like the effect of the stronger pain killers I was given (Gemadol and Gabapentin) but do take Paracetamol to take the top off.

I am very sorry to hear about your situation and would advise you to seek a referral to specialists. With a verdict at this level, your physio would be better equipped to advise you on the best exercises for your condition.

Best wishes for pain relief as soon as possible.

Anna

That looks to me like a mighty powerful cocktail of drugs. May I suggest that, if you haven't done so already, you check through the information leaflets that come with them and see whether any of the them are recommended against if you are taking the others?In my days before PRM, I had three or four, widely-spaced, allergic reactions to something or other. The reaction showed itself by crippling back-ache. I believe it's worth checking that the combination of pills is not actually making your condition feel worse.

Was it just a telephone call with the physio? I had a video call with a physio at kings last week as a result of which he has agreed to see me in person next week, all best wishes

I am going to state the obvious- you can’t properly treat a condition until you know what it is! I would suggest that you demand an MRI to find out what is going on.Four years ago I developed severe lower back and leg pain. An MRI showed severe lumbar stenosis L4/L5, and other problems. After much physical therapy that did not work, I found a great neurosurgeon who agreed to take my case. Subsequently, I underwent a lumbar laminectomy which was very successful. Still have some minor back pain on occasion but leg pain has resolved (other than PMR symptoms).

Post-Surgery recovery was not easy, but very much worth it. I was 68 at the time and determined not to live the rest of my life as an invalid. If at all possible.

in reply to Manchild

I wish that I had the courage to have that surgery done. The surgery that was proposed to me was the removal of several levels of facet joints and complete lumbar fusion with no guarantee it would help. On the other hand, I once had radicular leg pain that was so severe that I would have consented to an amputation.

All this talk about back pain in people diagnosed with PMR makes me wonder about inflammatory arthritis. It is no wonder people with PMR can't seem to taper off the steroids.

Manchild profile image
Manchild in reply to

I got several opinions before having the surgery. Finally found a neurosurgeon who promised he could help me without fusion. Otherwise, I don’t think I would have had the surgery. Fusion is needed for some back problems, but my condition was such that it was not absolutely necessary. The surgeon I chose, or who chose me through recommendation of a physician friend, works out of the University of Pennsylvania, and has performed over 13k back surgeries.

in reply to Manchild

For me, it just boils down to courage or lack thereof. I was a long time nurse in the neurosurgery department at the University of Iowa. I know several neurosurgeons who have told me the same thing. They basically have said they wouldn't touch my back unless the pain got so severe that I couldn't tolerate it anymore. The surgeon who proposed the surgery thought the time had arrived when I developed the radicular leg pain, foot drop, and the tendency to drag my leg. However, the power of prednisone rescued me once again and the surgery was postponed.

My rheumatologist had a bit of problem with my taking such a huge dose of prednisone. After reviewing the MRI, she only wished I had taken a localized injection instead of oral but then she quickly moved on.

Longtimer profile image
Longtimer in reply to

My neighbour who in his 80's had lumber stenosis 2 years ago, he is an obsessive gardener, had the operation, in just a few weeks back doing his garden!......no problems since....When he sees me struggling about with PMR, he says he was lucky something could be done for him!...Good luck...

in reply to Longtimer

Yes, the vast majority of back surgeries have good outcomes. Unfortunately, sometimes the surgery doesn't go so well. Having worked as a nurse in neurosurgery and taken care of countless post-op patients, I know most surgeries are without complications. However, it is only those few cases that don't go so well that I have a vivid memory of.

Longtimer profile image
Longtimer in reply to

Oh dear, you saying that has put me off if ever I needed it!.......

I can relate to your back problems. An MRI indicated Lumbar Spinal Stenosis in L5 and L3.The Pain Clinic ordered a Lumbar Steroid injection which did not work. My pain came back.

Physio has only been helping some, but actually 3 treatments of Acupuncture so far have caused noticeable improvement in mobility.

I did not like taking gabapentin which made me uneasy when driving during the day. It did not help much for pain during the night.

Sometimes I take just 1 Tylenol a day when not comfortable.

It is a true struggle..... which started 3 months ago.

I was put on 20 mg prednisone by my Rheumy for severe Pelvic Girdle pain. I had a difficult time getting out of bed into a standing position.

I am still tapering down prednisone VERY carefully and gradually......still on 16 mg. I was on 10 mg for PMR.

This is my story.

Good luck! I hope you will be able to find a helpful treatment.

' standing at the sink for more than 5 minutes'Had the same problem when my GCA started, although I couldn't even manage 5 minutes - more like 30 seconds.That sympton stopped as soon as I was prescribed steroids

Hello.Am new to this and newly diagnosed. But what you are describing is me. Some days my hips sort of burn or feel like they are dislocated. It's also down the legs and back. I cannot move above a few minutes and cry often. It took me a year of pushing and my own investigations to get a much needed scan. I do have other issues too and find it so easy for drs to say it's "your condition"or a flare up. Finally I had x-ray and scan which proved I was right to keep fighting. I now. Have DHC twice a day 120mg all told am also on prednisolone 15mg. I also started this 3weeks ago and up to 2 days ago IDid have great improvement for 2days back to square one. I do intend to keep pushing. I have worked in a medical environment so for me it's easier to push and know what's out there.

I have compressed nerves and other things. I suggest you too push to see a specialist and one who may specialise in the area you are dealing with. And secondly insist on a scan Also try to get your meds changed or increased. A doctor I worked with once told me, that if a patient doesn't insist or make the doctor realise their problems and frustration they assume it's a mild pain or view your description slightly different than them. And at the end of the day The pain you endure or other issues are only felt by you. Make them understand.

Good Luck.

PMRpro profile image
PMRproAmbassador in reply to Formula12

I suggest you follow your own advice and ask for a higher dose of pred. 15mg is at the lower end of the dose range, many need 20mg to clear out the existing inflammation at the start, some need 25mg. And the most recent recommendations take that into account:

rheumatology.org/Portals/0/...

Recommendation 3

I also had dreadful deep hip pain with my PMR, I really had begun to think I needed hip replacements, especially after a move from a house where I did stairs only once or twice a day with multiple toilets to one with downstairs kitchen, upstairs toilet. It took some 4 months for that pain to go altogether - despite an amazing 70% or more response in other symptoms within 6 hours. But you DO have to do your bit to help it - and believe me, avoiding stairs can be critical! I couldn't walk more than 100m without excruciating pain until I came here to my flat in northern Italy where there is a lift. Within days I was able to walk into the village in relative comfort and within a week I was able to transfer my ski gear to storage at the lifts and start skiing again. I already had my annual ski ticket so I really went up just for the sun and fresh air but I also was able to doa few short runs - and after an hour or so, I realised my hips were looser and less painfull. Even now, too many stairs on a day leaves its mark.

Formula12 profile image
Formula12 in reply to PMRpro

How up lifting. Am so glad things are much better for you. Love Italy. It's a beautiful place I've been many times and intend to go back soon as çovid is controlled. Or we can travel.

Formula12 profile image
Formula12 in reply to PMRpro

I have not tried to butt in or offend anyone. I was relaying what I was told as a young trainee years ago. It stuck with me as it's so true. Only the person in pain knows how bad it is for them.And yes I am requesting an increase. Today I see my doctor which I do every 2 wks.

Formula12 profile image
Formula12 in reply to PMRpro

Sorry I left A reply in the wrong box. Italy is a lovely place. I've been many times. The pace of life and scenery is beautiful. I'm glad you are able to do a lot more whilst your their. I hope you continue to improve. Stay safe and well. And Thankyou.

PMR pro has said it all. In the USA you have to do so many sessions of physical therapy, then MRI before being referred to the pain clinic.

I have bulging discs in my lower back and back to the pain clinic for steroids injections. Hoping to avoid surgery. Best to you from one who knows your pain.

So sorry you are having these frustrations. I too suffer from back pain and standing at the sink and doing dishes at one point was impossible. I couldn't walk any distance without having to give in and sit down. what I have noticed that since I've lost 2 stones in weight it's stopped. But like yourself it is really disheartening when you get the shrugged shoulders. I don't think its fully recognised how wearing and exhausting all of our combined symptoms can be. I think more should be done to help and address the impact on the person. I hope you find a cause sooner rather than later.

So many of us suffering back pain! I can only emphasise with you. Currently, I’m sitting with my hot water bottle on my back - psyching myself up to get on with the day! My back pain got (even) worse a few days ago, lumber muscles contracting painfully throughout the night, I hardly slept. I rang the GP again yesterday, I’ve been prescribed stronger painkillers (15mg Codeine) but they don’t work. This is so debilitating and depressing. The Physio doesn’t think a scan would be helpful and won’t refer me, any results would not change the Physio’s treatment plan (gentle exercise!). My son has booked me an appointment with a private Rheumatologist 7th January. It costs a fortune! But maybe that’s the way to go for a thorough assessment. Meantime, I’m slowing tapering down on the Pred (DL taper). Currently coming down to 7.5 from 8mg. So far so good- but I was a bit concerned that coming down on Pred may exacerbate back pain?!

PMRpro profile image
PMRproAmbassador in reply to Singalong1

Try a flooding dose of ibuprofen - you need the antiinflammatory effect which cocodamol does offer. That is 800mg and then sit with the hot water bottle over the painful bit. Take it with food and possibly some Zantac just in case. That is what I do (approved of by the rheumy) when the chronic problem becomes acute and I can't move at all.

Ibuprofen was designed to work like that, take a flooding dose and then top up with a lower dose. I usually find that the 800mg is enough for the best part of 24 hours relief and then one dose of 400mg is plenty afterwards. The physio is probably right - muscle problems don't show on imaging so often you will be told there is nothing wrong. That had been said in the UK and also one private rheumy here claimed it was OA - luckily his colleagues at the hospital recognised spasmed muscles with underlying sacroiliac joint problems and started the management. The super effective and quick approach caused a rare side effect for me so I was handed over to the pain clinic and physio because of a complex medical problem. It won't ever cure the back problem but we know how to deal with it.

Singalong1 profile image
Singalong1 in reply to PMRpro

Thank you PMRpro. I wasn’t sure we could take Ibuprofen with Pred? I’ll try anything at the moment! It’s a lovely morning here in South London, and I’m off for a walk to local park. It’s so tempting to just sit with HWB but walking actually helps. I hope you are currently pain free. Thank you again for sharing your experience and advice. This is such a helpful forum 😊

PMRpro profile image
PMRproAmbassador in reply to Singalong1

Only short term - even I wouldn't take it more than a few times. My rheumy actually did a course of high dose NSAID as infusions - it did work but no better than my approach plus the pain clinic/physio. So well-buffered-with-food high dose ibuprofen and the hot water bottle remains my emergency go-to - and I rarely need more.

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