Back pain

[Northernnugget]

Apologies in advance for the long post After a bit of a battle with Rheumatology I had a Pet scan back in February that was suggestive of mild PMR They had previously diagnosed me with Fibromyalgia at the age of 51 as I was far to young for PMR and my blood work was unremarkable I was given 15mg of Pred and all the stiffness magically went away so I assumed I was misdiagnosed until I recieved the summary letter from Rheumatology detailing some of my recent medical history with Fibromyagia still lprevelant as an ailment after PMR I shrugged this off as I felt relatively fine apart from neck pain but I have arthritis in my neck I started to taper as instructed but felt some of the stiffness come back when I dropped to 10 so Rheumatology suggested to start again but on a slower taper I took it upon myself to decrease and reduce by 1mg per month I started to have more regular bilateral pains in my shoulders and sometimes more pain in my neck but I beasted on and got on with life A month ago I got up to use the loo and felt excruciating pain in my lower back and slightly lost control of my bladder as I was lowering myself down Terrified I managed to get a doctors appointment She examined me and figured it could be a kidney infection then prescribed antibiotics to take over the weekend and if no improvement to go back In the end they sent me to A&E for the kidney stone protocol and more antibiotics were given I was talked out of a CT scan on account of I wasnt writhing around in agony The initial back issue had gone I was left with niggling intermittent pain instead We had a holiday booked and were due to fly literally three days after my trip to A&E The consutantant could see no reason for me me not to go so off we went but I still had the uncomfortable niggling back pains and on top that of the neck and shoulder were getting worse I upped the pred to 15 and went on my jollies Since then my back has got worse I had an appointment with the docs and she started me on HRT I rang the doctors last week and was told to take Naproxen Cocodomol and paracetomol Its not helping in the slightest so I have another appointment booked for Monday

So here are my symptoms

Pain at the back of my neck Sometimes theres a band of numbing tightness where the skull starts

Stabbing pains under both shoulder blades that sometimes becomes a dull ache but doesnt go away

Stiffness in my spine and pains that feel like a sharp stitch between the waist band of my jeans and just below the rib cage It gets worse as the day goes on

Heaviness and a dull ache in my arms but I can raise them above my head but

I'm walking ok but sometimes my legs dont feel like they belong to me

I have been doing some gentle stretches but not sure its making it worse

Im still on 15 pred Would it be a good idea to move up to 20 to and see if the symptoms improve and tell the doctor what I've done? If it was muscular/skeletal surely the Naproxen would have helped Could a kidney infection cause a PMR flare or am I looking at asking for relief from Fibromyagia? I currently dont take anyting for that at the moment

Sorry for the long post guys x

[PMRpro Ambassador]

Even Naproxen will do zilch for PMR and cocodamol is useless. What you are describing could be me 15 months ago - a major PMR flare combined with myofascial pain syndrome. I ended up transported to the ED (couldn't have got there by car) where they gave me an opiod pain killer i.v, - it did almost nothing but luckily I already had an appointment for rheumatology and was in the middle of what they call neural therapy but had had 2 days off over the weekend. That was sub cutaneous injections of lidocaine and infusion of a very high dose NSAID - by the time that was completed I could walk, just! By the next morning I was mobile.

At home in an emergency I take 800mg ibuprofen (nothing less works, that is its flooding dose, all the receptors must be full) and use a hot water bottle over the tight muscles in my low back. Heat over the whole back may help but I will lay odds your back muscles are totally in spasm.

I have 2 concerns - the loss of bladder control. DId you tell the ED? If it happens again make sure they take notice.

And 2 - cocodamol AND paracetamol at the same time? Really? Are they trying to kill you? COcodamol has paracetamol in it, you MUST NOT take both together, the difference between the maximum dose and toxic dose of paracetamol is very small and it does you liver no good at all. It is a very nasty way to die.

[Northernnugget in reply to PMRpro]

Thank you for your response I havent been taking the paracetomol frankly I felt a bit fobbed off on the phone regarding pain relief for my back She told me to call back the next day If the pain in my back didnt improve under her recommendations which I did but couldnt get an appointment until Monday I told them in A&E about my little episode of incontinence I was able to gain control of my bladder within a second of it starting They asked me about numbness down below of which I have none etc It hasn't happened since Do you reckon my back could be Myofascial Pain? Isnt there a muscle relaxant for this?

[PMRpro Ambassador in reply to Northernnugget]

But seriously - did they tell you to take both cocodamol and paracetamol? That needs reporting because it could kill someone who didn't realise and did what many do, take more and more painkillers because the pain isn't gone. Some people will take 4 times the maximum dose - I've seen it.

The neural therapy I get works as a muscle relaxant. I don;t live in the UK bit the original treatment I got is fantastic but I can't have it any more: it involved admission to hospital, an infusion of high dose steroid and an NSAID in the morning and i,v, diazepam before bed. It sorts it in a few days. Unfortunately I develop a rare adverse effect with i,v, diazepam - severe atrial fibrillation and it isn't nice, I don't know if oral diazepam works as well. Instead I have to have to have the slow old-fashioned approach with neural therapy which is brilliant but takes rather longer.

[Northernnugget in reply to PMRpro]

To be fair I may have got a little confused She spoke very fast, had an accent and was a bit dismissive She said to take Naproxen with paracetamol 4 times a day then said I'll write you up for Cocodomol Then she said I see you already have Codeine she said take that with the Naproxen and Paracetomol 4 times a day I was given the Codeine for break through pain with the kidney infection I already have some Cocodomol to help with a frozen shoulder so i didnt bother with paracetamol and just used that but as I say Its doing zilch What is the slow old fashioned approach to Neural Theraphy?

[Northernnugget in reply to Northernnugget]

By the way I can only presume she didnt prescribe Cocodomol because I havent had a text message from the pharmacy to say my prescription is ready x

[PMRpro Ambassador in reply to Northernnugget]

I honestly don't know if it is used in the UK - probably not as it originated in Germany! It uses repeated sub cutaneous injections as the muscle relaxant and it is painful at the time - but no-one ever says no more because it works so well.

practicalpainmanagement.com...

I think there are private physio practices that offer it.

Yes, if that is what she said, she meant to use codeine and paracetamol together - but it is inexcusable to leave any patient confused, whatever the reason.

It is something that pushes all my buttons - if a patient doesn't speak English well enough, they get an interpreter. When the doctor speaks English poorly or with a heavy accent - it is racist for the patient to ask for one!

[Northernnugget in reply to PMRpro]

How often do you have this done? I probably could have understood better if she spoke a bit slower x

[PMRpro Ambassador in reply to Northernnugget]

The pain clinic does partial needling every month or two, depending on how often I see her, SOmetimes she doesn't, it goes on need. All through Covid there was no Pain Clinic and that did let it get worse.

[Northernnugget in reply to PMRpro]

I've Googled it Well out of my price range at nearly £500 a go then my trip up to London I'll see what is said tomorrow Thanks for your help lovey x

[PMRpro Ambassador in reply to Northernnugget]

And I get it nearly free at the local hospital! Another point on the "stay here" balance ...

[Northernnugget in reply to PMRpro]

The good food, wine, weather and magnificent architeture would be a good reason too I'd imagine Our NHS is being cut to the bone 13 years of austerity x

[PMRpro Ambassador in reply to Northernnugget]

Not so much the architecture up here in the mountains - though it is very Tyrolean in places.

[Allotmental]

I think the reason why they asked you about numbness 'down below' when you told them about the issue with your bladder was because this can be indicative of a rare condition called Cauda Equine Syndrome (please note the second word ends with an A not an E but the spell check mis-corrects it every time I type it - grrr!). This can happen when a person has a prolapsed disc and it causes nerve compression in the CE. There are a number of key signs - this is a pretty comprehensive description: uhdb.nhs.uk/cauda-equina-sy....

CES is a medical emergency because of the risk of permanent damage which is why medical practitioners, and other professionals like osteopaths are trained to look for the red-flags

Issues in your spine can lead to a loss of bladder control to some extent or another. I've had a lot of lumbar spinal surgery and can always tell when it is getting aggravated because my ability to control my bladder changes.

[Northernnugget in reply to Allotmental]

Thank you It hasnt happened since I'm hoping it was just a shock to the pain I felt x

[Missus835]

Your symptoms very similar to my own. INSIST on MRI or CT scan and make them do a comparison. See my post from this morning "UPDATE: Progress....etc." it would seem not one pain reliever prescribed would work on my back. The only thing that really worked was paracetamol as you call it and ibuprofen. Right now I'm using Tylenol 3 which is a combination of Tylenol 300 mg and 30 mg codeine I am supposed to take two pills every 6 to 8 hours, but still require ibuprofen to reduce the inflammation. Not until I receive the vertebral plasties will I hopefully see Improvement or eradication of the muscle spasms. These spasms have caused pain from my neck to my diaphragm, to my stomach, to my thoracic muscles, to my lumbar muscles, to my lower back and hips. The pain has been relentless and I have been on bed for 6 weeks unable to stand or sit. I can get around for a few minutes with my Walker and that's about it. Be firm with them, don't water down the pain you're having or the symptoms and insist on the tests you require. All the best. Xx

[Northernnugget in reply to Missus835]

I've only just seen this Had a chat with the doc this morning and basically she said to go down the physio route Nearest appointment mid September They dont offeranything diagnostic until you've had physio The problem is I've also got Fibromyagia and a lot of symtoms bleed in to each other She offered me Diazapham for a couple of days but I've asked for Amitriptyline She said that may be better cos I could take it longer x

[PMRpro Ambassador in reply to Northernnugget]

Depends if it is muscle spasm - amitriptyline will probably be less useful there than diazepam which is a muscle relaxant.

[Northernnugget in reply to PMRpro]

I'll have to see how it goes 😕 x

[Alice70]

I agree with missus 835 you must insist on a scan preferably MRI ,I cried for 9 months in pain and could hardly move with my back spent most of my time lying on bed ,I eventually had mri scan wich found all sort wrong with my spine including three spinal fratures ,the two small ones have healed now ,but the bigger one still trying to heal,I don't think for one minute you have that by your symptoms being bad but different to mine,also other things with my discs ,I've had to go on antidepressants latterly, also getting treated for osteoporosis, so please insist on a scan with your back you can't guess ,your spine and other bones need looking at,good luck for the future, by the way I had to go private scan ,if your in the uk NHS so slow