Lowe back pain

[j-e-a-n]

I have been reading a lot in the last couple of days about ain and PMR. I was diagnosed with GCA in September this year and started off on 60mgs Pred and am down at the moment to 35 mgs. In the last 3 weeks or so my lower back, aroubd the pelvic area has got morw and more painful and now if I stand for more than a few minutes is excruciatingly painful. The interesting thing is that more or les as soon as I sit down, the pain goes away. Painkillers or gell doesn't seem to help. My Rheumy sent me for Xrays on my lower back yesterday, but the results will not be in until after Christmas. Do you think this may be due to PMR . I would have thought that on 35mgs I would not have had this much pain.

Hope you all have a lovely Christmas.

[babssara]

I too have this. Only diagnosed July this year, so will be interested in your replies.

Have a good Christmas

Babs xx

[PMRpro Ambassador]

I doubt it is PMR - but it could well be due to myofascial pain syndrome which is frequently found alongside PMR. It is caused by the same inflammatory substances as PMR (cytokines) but they are concentrated locally rather than being systemic. It often results in hard knots of inflamed muscle fibres which appear in pairs of what are called trigger spots on either side of the spine, in shoulders, about rib level and in the lower back about where babies dimples appear. This, in turn, can cause muscles to spasm and the tight muscles pinch or irritate nerves. It can cause sacroiliacitis - inflammation of the sacroiliac joint in the pelvis. While standing there is more stress on the spasmed muscles which reduces when you sit. Since it is muscular in origin it rarely shows up on x-rays or other scans but a good orthopod or (better possibly) a physiotherapist should be able to diagnose it clinically.

It often responds well to local cortisone injections and/or, if you can bear it, manual mobilisation of the trigger spots - which can be done by a physio. Here where I live in Italy the local pain clinic does that plus a technique called needling (in English, quaddling in German) which can be done "dry" or using muscle relaxants/cortisone in the syringe. Very sore at the time, just for a very short time but works wonderfully to relax the muscles. I know there are places in the US that do it but I doubt there is anywhere in the UK. I personally have had a lot of benefit from Bowen therapy for such low back problems - it is now part of the service offered by the University Hospital of North Durham Pain Clinic so not an "off the wall" alternative therapy but a complementary therapy that often achieves a lot of relief and one that can be accessed without waiting for a doctor's referral. Any relief from the pain is a bonus!

I really do sympathise - I was admitted to hospital because it got to the stage where I couldn't move at all without excruciating pain. I had, by the way, been told by a local private orthopaedic specialist that the low back pain was due to wear and tear and I'd have to live with it! The pain specialist and the physio were horrified - and immediately identified the muscle problem.

In the meantime, you may get relief by sitting with a hot water bottle across the area that is so sore - that works for me. Others find alternate heat and icing works. It depends a bit how much is due to inflammation (ice) and how much to muscle spasm (heat).

It occurs to me that one possibility - since you say it is better when sitting - might be lumbar spinal stenosis. Does the pain go down your legs or is it just low back?

[j-e-a-n in reply to PMRpro]

THank you PMR pro. The pain is just in the middle of my lower back and can expand to the right side into my buttock, but not down my legs. Hasn't been too bad this last couple of days as I have sat down a lot. I will see what the Rheumy suggests when he gets the results after Christmas and New Year.

[Hidden]

Hello Jean and Merry Christmas.

I am really sorry to read about your excruciatingly painful symptoms, and can empathise as I had (still have in fact) exactly the same; plus some added extras that are even worse. I have been experiencing exactly the pain/s you describe since a few days after my first reduction – from 60 mg to 50.

Since then I have read the attributed causes but, having tried everything bar steroid injections, nothing has worked for me. Some Doctors are still against steroid injections when one is already on Prednisolone, and I’m not certain that I want to go down the route of having steroid injections anyway. The accumulation of steroids in the body due to the very high starting dose for GCA, means that withdrawal pains can be really bad. What is currently not right is that, knowing this, our primary carers (be in Doctor/s or Rheumatologist/s) don’t spell out for us, at the start, what to expect . If they did then you would know that what you are experiencing is common with GCA, especially as one gradually reduces the dosage, and it comes as no surprise to them when you report it. Apparently GCA was first written about in 1890 so one would have expected the possible sequence of events through the GCA journey , and the different pains, pain levels and causes would be well known by now – apparently not so.

I rarely post as there are clearly far more experienced people on this site to answer questions. However I alerted because your description is an exact copy of some of the pain, and disability, that I have experienced with GCA. This post may get a bit lengthy as I’ll try to explain how I have personally experienced pain with GCA. While I don’t have the finite answers, and my story will hardly cheer you up, suffice it to say that the pain would appear to be par for the course – certainly in my case of GCA. GCA sufferers accumulate a higher build-up of steroids in our systems because we start on a much higher dose than those with PMR. I was diagnosed by an out of hours Doctor, called by Paramedics, and then 3.5 weeks later that was confirmed as GCA via a temporal biopsy. That was in May of this year and I was taking 60 mg Pred. for all of those first 3.5 weeks – bang goes the myth that says if you don’t have the Temporal Biopsy within the first few days, or certainly 2 weeks, the giant cells will not be there – having been knocked on the head by the steroids. I subsequently took the 60 mg for all of 6 weeks – started by the OOH’s Doctor. Even then the Prednisolone didn’t get on top of the double vision for over 2 weeks, and the jaw and tongue claudication well into week 4. My headache was never too bad but I’ve never been a headachy person. Still, the usual accompanying swollen glands, neck, raised lumps on the temples, pain deep in the ear etc were all present. At least with GCA the symptoms are so distinctive as to be unmistakable for withdrawal or side effects as we reduce. Some people are unlucky enough to get PMR as well – fingers crossed I’m clear of that to date. In fact apart from my trunk, which is currently just a receptacle for a carousel of pain – ever changing, ever moving – I feel wonderfully well.

It really is a constant source of frustration to me that there is so little online relating solely to the PAIN associated with GCA. Hindsight is easy but I suspect that my GCA was there certainly a few months prior to my ending up in hospital – sent by the OOH’s Doctor - in May. I look at the posts in my email every day, but the questions and replies mainly relate to PMR. I would appreciate more information targeted at sufferers of GCA. At least I know that any pain I suffer isn't PMR, so I suppose that’s a starting point. Maybe all the in-depth GCA information is there historically and I just haven’t come across it yet. Kate Gilbert’s book is brilliant but again doesn’t say much about the PAIN associated with GCA. I feel that the PMR sufferers are more than catered for while GCA patients are mentioned in passing. If PMR sufferers think they are in a minority and that some health officials don’t know enough about it, or take their symptoms seriously, then how do they think GCA patients feel ?

My own experience to date tells me that the muscle knotting pains and the Myofascial pain usually follow a reduction in dosage – commonly within 2-3 days. So – withdrawal symptoms, but boy are they agonisingly painful. One such attack lasted 6 weeks, whilst another cleared up in just 19 days. As the months have passed – 8 now – the original pain that you are currently experiencing has stayed with me. It’s still bad, but not as bad as what was to come. Incidentally, I did try walking through that pain, which resulted in a pulled right buttock muscle – duration about 10 days. As an X-cancer patient I have had several MRI and CT scans since May, including Dexascan and a spinal/lumbar MRI. The Dexascan shows my bone density to be ‘satisfactory’ – but, as I am 74, I’m happy with that. Wear and tear at my age is pretty normal, and I had excepted at least Osteopenia – relief there then. May be down to my love of cheese.

The next type of pain I experienced was just after reducing to 22.5 – and that manifested itself in my middle back. Moving in any direction caused extreme pain. Once I achieved an upright position, then stood for a couple of minutes to get balanced, I could walk – in much pain but not at least mobile: Provided I didn’t move right or left; try getting up or down, or in and out of the car !! This situation was constant for approximately 6 weeks before vanished completely over a period of 2 days !! One day I could hardly move, the next I was OK again. A pain-free period followed (apart from the problem I first started with on reducing to 50 mg – which has always remained) then the same nerve-type pain returned – but manifested itself over (not IN) my right hip area, and up my side. Additional to that the same nerve-type pain located itself across my upper back – at the level of my lungs. The latter lasted several weeks – alongside the lower pain/s, and only 4 days ago decided to reduce in intensity – now I can cough or sneeze without being in agony while I do it. I have noticed that each time the pain has started 2-3 days after a reduction in dosage, so am convinced it's withdrawal symptoms. I have been reducing carefully (e.g. 20 – 18) and my latest reduction was also a gentle one - from 18 to 17 mg. On day 4 the latest pain moved to my low middle back and then, on day 5, to the left hip area, involving a little groin pain, whilst leaving the right side almost pain-free !! On day 7 it moved again to settle on my very low centre back and pelvis where it still is ...... from experience I now know it will go but that it will then pop up elsewhere when I go down to 16. It seems that reducing the dosage is the answer – but not at the expense of a flare.

While all this was going on I was Googling like mad – looking for the answer and came across Myofascial pain syndrome. Now the Myofascial-type pain (which I have been calling nerve-type pain as it’s like a mass of trapped nerves) is excruciatingly painful and immobilising. However, on looking up the symptoms they don’t fit closely enough Yes, it is like the nerve sheath is inflamed but NO it doesn't go down my leg/s or even stay in one place – it moves around – but only around my trunk. From front to back. From side to side. Currently walking more than a few steps is out of the question. I’m getting expert at crawling again ! For the record it’s only my trunk area that’s affected – no limbs, shoulders, neck etc. Nothing below groin or above mid-back. Once in bed I sleep like a baby – always have. Sitting and lying down is still pain-free.

Throughout all this I have also experienced moderate pain either side of my waist and across my transverse colon – outside not IN. I haven’t had any GCA symptoms for months (thankfully) but am still being very careful about reducing as I want to avoid the dreaded flares. I’m well set up with 1 mg tabs and a v.g. pill cutter. I was due to reduce to 16 today but will leave it until the new year now. My journey so far has been 60 mg from May 4th to 17 mg by 11th December. I expect my current Mo pain to subside sometime this next week – if it follows the usual pattern.

I’m not letting it get me down and have remained cheerful – if pretty useless. My weight has remained stable by adopting the Paleo diet: I have my bloods tested every 6 weeks and they have been just fine for months now. I tried Bowen – it made not the slightest difference. I bought a Tens machine and that didn't work either. My Robin McKenzie back exercises from when I slipped discs in past years (on 3 separate occasions) don’t work on this – they just make matters worse. So – I’m sitting it out (in more ways than one). I do try to move as much as possible, and force myself to walk around the house when my husband offers to get things for me. I also get to the supermarket by hanging onto him, and then draping myself over the shopping trolley/s. Only one week I did have to sit it out in the car. My Rheumatologist wants to start me on intravenous Zoledronate but I refuse to take anything other than the steroids and 2 x CoCo to get me moving in the mornings. I wake up pain free and dread moving – but it has to be done. CoCodamol takes only about 10% of the pain away for a very limited time so there is little point in taking any more than the first 2, as the accompanying side effects of CoCo are not nice (been there, tried it, got the T-shirt). I don’t fancy injections and so intend to battle through this myself. After 6 months of intense pain I’ve got used to living with it. I do take several vitamins and have a good Carer in the form of my Husband – who is being brilliant. Also, being retired I can take it as easy as I want. It’s all very frustrating as I have always been very active – but I will get there and be active again. Having been offered Methotrexate and latterly Zoledronate, I researched them to find there are more Cons than Pros. OK they may do wonders for some – but what harm while you’re waiting to find out if you’re one of the lucky ones ?!

I do hope that you find a solution faster than I, my Doctor, and my Rheumy have.

This is all a bit rambling but I have tried to put the main points it down in some logical sequence, missing many minor (by comparison) irritations out – belly and back fat, mouth ulcers, sore throats etc but do hope it makes some sense to you. If you Google Myofascial Pain Syndrome, and read the part about the inflammation of the muscle sheath/s it may make sense – well it did to me and I can almost picture it happening as I feel the pain. Hopefully you will be spared the Mo pain but at least will recognise it IF you aren’t. I believe that Knowledge is Power.

The standing pain you mention; the one that eases the second you sit down may be due to muscles going into spasm, as apposed to inflammation.

May your journey through GCA be a lot less painful than mine. Just don’t mistake withdrawal symptoms for anything more sinister.

May 2016 bring you relief.

The CAT