Update on my previous post trapped nerve and PMR.

[Washingup]

After an MRI on my spine I do not have a trapped nerve in my back and my pain is two vertebrae bones crumbling. I have come to the conclusion that the pain in my back and bottom area is mainly my PMR flare, it is so bad I can't move without pain while in bed. Tried increasing my pred dosage from 6mg by 5mg = 11mg but no improvement. Today in desperation I have gone back to 25mg and hoping this will get me back to being pain free. I dare not tell my GP or rheumatologist! Don't know what else to do to get out of this chronic pain.

[DorsetLady PMRGCAuk volunteer]

Wow - that a big increase….and are you sure it’s totally PMR? What about bursitis or sciatica or myofascial pain? I’m guessing you’ve tried normal painkillers and all the usual therapies…..

[Washingup in reply to DorsetLady]

Yes, I've had morphine at the hospital and all sorts of other painkillers but nothing works! Just hoping the increase with pred his morning works.

[Sharitone]

It seems to me that with this level of pain, you should be telling your GP or rheumatologist. It's not usual or acceptable to leave people suffering like this. Good luck!

[Washingup in reply to Sharitone]

Thank you. I am at my wits end at the moment, just want to put an end to my misery.

[Nextoneplease in reply to Washingup]

I agree with Sharitone. You shouldn’t be in pain like this and I think you should tell the medics. Pity it’s come to a head at a weekend. If the 25mg doesn’t do it I’d call 111. My husband did this for me prior to diagnosis when I was really in agony and it did get me noticed at least!

I think 25mg is okay for the bank holiday but I wouldn’t carry on at this level without seeking medical advice.

Good luck - and sending gentle hugs xx

[Washingup in reply to Nextoneplease]

Thank you for your advice. I was at the QE in Birmingham yesterday and was left with, they couldn't do any more for me and I needed pain management. I've just taken ibuprofen which I have been told lots of times not too but it is the only thing that takes the edge off the pain. Dread going to bed, because it hurts so much to turn and dread having to get up. Sorry to pour my feelings out to you, you must have your own problems. I'm trying not to spoil my relatives easter by keeping quiet. So grateful for your reply.

[Nextoneplease in reply to Washingup]

Hi Washingup 😊

Ah, the QE, I remember it well - had my tonsils out there when I was about five!

Anyway…..Oh, I know that feeling of trying not to be a burden, just wanting others to get on and enjoy themselves 😵‍💫but really, it doesn’t do us any good in the long term, we know that. We have to be honest and let those who want to, help us 🤗

For the moment, though, I think taking ibuprofen is a good idea, so long as you can rest, keep warm and - eventually- get some sleep 😴

Every hour that passes is an hour closer to calling your GP and insisting you must get help. Sending you healing vibes 🧘‍♀️

And don’t worry about me, I’m ‘relatively’ okay, tonight at least !

Hugs xx

[Washingup in reply to Nextoneplease]

❤️ Just had Diazepam to help me sleep. All I seem to be doing is 'popping the pills' 😊

[Nextoneplease in reply to Washingup]

Sometimes we have to 😴😴😴x

[S4ndy]

When you say crumbling vertebrae do you mean you have osteoporosis?

Like other people have suggested I think a trip to your gp should be on the cards. There's no need for you to be in so much pain.

I have other issues besides pmr and need to pop lots of pills to keep pain free. After years of pain I now accept that that's what is necessary to enjoy a good quality of life. No one single painkiller works for me so I have a variety to take throughout the day and night. A pain specialist or your Rheumatologist should be able to help you with that. It took a lot of trial and error to find the vest combination that works for me especially as codeine has no effect on me whatsoever.

I note you have trouble turning over in bed. This was one of my problems. I had an Occupational Therapist come out and I now have a handle/rail on my bed which really helps with getting in and out and turning over. When you see your gp ask for a referral to social services to get some equipment to help you at home. I've just moved and had a higher toilet installed which really helps save my worn out knees!

I know how horrible constant pain can be. Back pain in particular permeates everything one does. If you feel your medical professionals aren't taking your pain seriously then I would suggest keeping a pain diary and taking it with you when you see your doctors. I did and rocked up to my Rheumy with a whole notebook filled. He apologised profusely as he hadn't understood how much pain I had been suffering. I realised that that was probably because I hadn't actually told him the extent to which my joint pain was affecting me. I have been on 5mg of pred to keep flares at bay for about 2 years at the moment in addition to all my other meds.

Hope you get some help soon xxx

[Washingup in reply to S4ndy]

Thank you for your reply, my husband didn't know what to do with me this morning, I was crying so much because of the pain. I know I have a PMR flare along with this back problem. I've increased my pred I haven't been able to speak to someone yet, gone back to my original dosage when I was first diagnosed. Expecting to get a telling off. Hoping to speak to GP after easter if I can get an appointment. Sorry to hear you've been suffering so much too.

[Missus835]

I'm sorry you're in such pain. 25 mg does seem like a huge leap. I started at 20 mg. in 2022. At any rate, I hope the Pred works and if not, then what? Have you seen a surgeon about the vertebrae? Perhaps talks with the GP? For my sciatica I take Ibuprofen and X-tra Strength Tylenol together (cocktail). Pred does not touch lower back pain, but the cocktail does.

[Washingup in reply to Missus835]

Thank you for your info. I hope to see my GP again after the easter holidays. I was worried about taking ibuprofen with my steroids. The doctors told me not to take them, but ibuprofen do take the edge off the pain.

[PMRpro Ambassador in reply to Washingup]

Take it with food and preferably also use a PPI or the like - omeprazole or famotidine/cimetidine is the alternative group of drugs. You can get them OTC to tide you over unti the GP can prescribe them if you aren't already on them for the pred.

[Washingup in reply to PMRpro]

Thank you. I am on Omeprazole 10mg for acid reflux. I am thinking of taking 20mg until I see the GP. I feel my PMR has subsided so I am going to cut back on pred and get back to my original dosage of 6mg asap.

[PMRpro Ambassador in reply to Washingup]

You can but try!

[Missus835]

Ibuprofen can upset the stomach, especially since Prednisone can also. I try to take with food. The combo of tylenol and ibuprofen keeps my back mobile. All the best.

[Washingup in reply to Missus835]

Thank you.