Further update on flare or muscle pain

[sewinggranny]

Having made several visits to GP about back pain, I ended up being admitted to A and E 3 weeks ago because my blood pressure was 200plus/100plus, spent 24 hours sat in a wheelchair.This was after a 4 hour wait for ambulance in the early hours. Eventually moved to Acute Medical, the consultant there doubled my blood pressure meds, put me on Codeine phosphate and Oxycodone to help with the spasms in my back. had a visit from OT's. Back Xrays have revealed old spinal fractures possibly suggesting osteoporosis., I 've been home 2weeks, we,ve had a stair lift fitted, still in a lot of pain, Gp wants me to start reducing pain relief. I 'm still getting the spasms. I've got a carer coming in 6 mornings a week, to help with shower and dressing, doing laundry, preparing meals etc..Some days I feel to improve then the following day I'm back to square one. Orthopaedic consultant said I've to learn to live with the pain. I can't understand how things have deteriorated so much in approx 3 months. I'm currently on 11mg pred for PMR and have been told to continue tapering.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear that you are having such a rough time….and it’s all very well for others to say live with pain… they aren’t the ones suffering…

And although they are worried about osteoporosis- I think trying to reduce your Pred at the moment will be a step far… at least until you know how you feel.

Best wishes, and gentle hugs…

[PMRpro Ambassador]

Yes - while saying you need to live with the pain, you at least need to be referred to the pain consultant, away from a GP who obviously hasn't a clue about the pain you are in. I don't imagine 24 hours in a wheelchair helped either pain or BP!

At least virtual hugs don't hurt.

[cycli]

no fun and as someone suffering from compressed osteoporotic spine and subsequent curvature due to spasming muscle I can relate. they have no idea. today has been my best so far for the last few weeks. admittedly my BP is fairly ok and pulse whilst high is manageable. it is a hard road we are on but I hope yours improves soon.

[SheffieldJane]

What a terrible ordeal! So sorry the orthopaedic surgeon has a hopeless bedside manner. I am glad you have a team of helpers around you. I think that carrying on with a Pred taper is not very wise advice. A lot of your suffering has been caused by inept medics. In my non medical opinion, I would let things settle a bit before resuming your Pred reduction. Wishing you a wise, kind doctor going forward. 🌼

[Bcol]

So sorry to read of your problems, you are having a really rough spell. Nothing to add to the others comments but just to agree that it does not seem a sensible time to be tapering your Pred, think that needs to wait until other things become clearer. Virtual and gentle hugs🫂

[Pixix]

very sorry to hear your circumstances, I hope they will help your pain, & you see some improvement. S x

[Merryfield]

Dear Sewing - Sorry for all your pain😟. Docs are afraid we’re all going to turn into junkies from pain meds. Have they given you Tramadol? Not as addictive as oxy. Though i have taken oxy after surgeries on feet, face and knees and had zero problems with quitting. Am all for pain meds to help one have a life. Some pple get relief from maryjane. I am not one but it makes you care less.

[sewinggranny in reply to Merryfield]

no I haven't been given tramadol, trying to restrict myself to 2 x5ml oxycodone a day although I am allowed up to 4 spoonfuls per day,

[PMRpro Ambassador in reply to sewinggranny]

Proper pain control is essential - there is no virtue in "putting up with it" thinking you are doing a good thing.

[Merryfield in reply to sewinggranny]

Would take enough to kill pain.

[powerwalk]

M sorry to hear your issues. I'm in a very bad state with my back so I do understand. It goes from horrendous to even more horrendous by the day. I am waiting on MRI results, half fearing that there's not a lot to be done but like yourself it all went mental in the space of a few months. I real hope you can get some medication to help with your pain. I would agree that some pain management clinic might be able to help if you could get a referral. I really wish you the best, you are not alone, though sometimes it feels like that! Let us know how you go.

[sewinggranny in reply to powerwalk]

Thank you for your reply. I will ask if the GP will refer me to pain management clinic. All the best to you. This forum is such a comfort to me knowing that there are people with similar experiences. There doesn't seem to be a lot of consistency in the local practice, we have locum doctors who all have their own ideas on how PMR and pain should be treated and it's all about reducing the medication.

[powerwalk in reply to sewinggranny]

Oh i know, its all a struggle, extras like back pain are really not needed. Best of luck.

[Amkoffee]

I've lived with terrible back pain for 17 years and in 2019 my pain meds were stopped. I'm in the US and the term "Pain acceptance" is frequently used.but Dr and mental health prof. Personally I find abhorrant that any human being would be forced to accept pain of this degree when there are options available to reduce that level of pain.

[PMRpro Ambassador in reply to Amkoffee]

I had a friend who trained first as an anaesthetist before becoming a GP and he said that the one thing he learnt going that way round was how important pain control was - he never stinted on that

[Mayadill]

Fairly typical sort of clinic-letter:

"Dear GP, I saw your patient in clinic today and her disease/pain is well controlled on x mg of Y tds. I have not altered her treatment and shall see her again in three months' time."

Usually they like things to be well controlled. It's one of the things they're there for if they can't effect a cure. Your story is yet another a horrid lesson on what happens when they don't. I do hope you can find someone to fight your corner and work with you, not against you. There are brilliant gifted awe-inspiring delightful medics. There are intelligent sensitive sensible caring ones, There are other ones. I think what we're basically talking about when it comes to bad medical decisions and also questioning them is that if you train in a hospital, keep your nose clean, jump through the hoops, you inevitably end up a Consultant, at which point the gloss is all doctors are equally good, though of course everyone, not least other doctors, knows they're not. There is in fact somewhere along the road a 360 degree assessment where all grades of staff, secretaries, clinic-clerks comment on the young doc in question. The slight problem is that in 30 years, while countless junior docs climbed the ladder, I was only asked to fill in one such assessment.

jrcptb.org.uek/assessment/w... Multi source feedback. You'll see that not all specialties use all methods of assessment.

[Karenjaninaz]

Live with the pain???? Nooo. Retired anesthetist here.

In time opiates stop working - and the pain gets worse -not to mention the binding from opiates.

If your pain is from an osteoporotic vertebra there us a procedure called vertebroplasty. It’s done under X-ray where a cement is injected to shore up that vertebra. Local anesthesia. It gives wonderful relief.

Pain clinic has other modalities for relief.

I had revision surgery for scoliosis at age 60 and that pain was excruciating. Narcs hardly touched it

(I was in a fentanyl patch-even) Not enough…

My pain doc had a nerve stimulator called “Alpha Stim” along with other meds. Even ice paks gave relief.

Don’t accept “Living with it” that’s cruel.