No i won't,but i feel like giving up......... - NRAS

NRAS

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No i won't,but i feel like giving up.........

sylvi profile image
30 Replies

I got up this morning in so much pain and it hasn't eased at all.

I have rung the pain clinic to tell them my infusion has failed. They are going to give me a phone consultation next Wednesday to see what is the next step. I can barely walk without being in pain it goes right down my right leg.I really have had enough.

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sylvi profile image
sylvi
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30 Replies

I'm so sorry Sylvi. I wish I could wave a magic wand and make it all better. I guess I will have to settle for sending positive thoughts and wishes for a solution soon

sylvi profile image
sylvi in reply to

Aww darling thank you,i am sure i will feel brighter tomorrow.xxxx

Nettac profile image
Nettac

Sorry you're in pain Silvi. I feel in a similar boat today. I hope your rheumy gives some good plans.

I'm seeing mine next week. Always dread it. I'm hoping for a shot in the butt. Obviously not gun shot, that would be excessive! 😳

Beautiful picture by the way.

sylvi profile image
sylvi in reply toNettac

I too am wondering if they will decide to do something different when they ring me next week.xxxx

gwynedd profile image
gwynedd

Sending gentle hugs your way 🤗🤗, I hope you find relief soon.

Xxx

Jacey15 profile image
Jacey15

Sorry to hear that you are in such a lot of pain, no wonder its getting you down. Sending a gentle hug and hope you get some relief soon.

Jacey xXx

hawker955 profile image
hawker955

Some things we never get over; we just have to get through. That's where mutual support comes in to help us all get through the problems caused by RA.

Good Luck.

Eiram50 profile image
Eiram50

Really sorry to hear that this level of pain continues for

You Sylvi - it's no wonder you feel the way you do.

Your in my thoughts

Pinkbungelowgirl profile image
Pinkbungelowgirl

Thinking of you and hoping you get some relief soon.

If I had three wishes, I'd use one for you.

Gentle hugs, xx

weathervane profile image
weathervane

Sending you lots of pain free wishes 💐💐

sylvi profile image
sylvi

Thank you all for your lovely words of comfort.xxxx

medway-lady profile image
medway-lady

Are you sure the infusion has failed and you hav'nt done something to a nerve in your hip ? I think I'd go to the GP first to make sure its not just a coincidence. I hope your taking it easy but I suspect not. lol xxxx

sylvi profile image
sylvi in reply tomedway-lady

Yes i am sure darling i was sure of it before i got of the bed after it was done. I have been taking it easy and to be honest i haven't felt well enough to do anything.xxxx

medway-lady profile image
medway-lady in reply tosylvi

Not good then hope it gets sorted out soon. xxxx

Nickijk73 profile image
Nickijk73 in reply tomedway-lady

Hi sylvi

Considering you've gone through the infusion,and you're still in this incredible amount of pain,I'm like minded to think that it's something to do with a nerve somewhere along the way - I used to suffer horrendously with my left leg,even after god knows how many infusions/injections over the years.... the final straw for me was when my leg would either just keep giving way from under me,or when lying on the bed with my feet raised on a pillow to help my back,it was almost like watching someone else pull the strings with the way that my legs used to literally jump off the bed without warning.... at one point I was laughing at how high,because if I didn't I'd just end up going mad with the pain and confusion. In my case it turned out that I needed a nerve decompression surgery,and since then,I have the odd usual arthritis related problems,but nothing like I used to,or you seem to be experiencing at the moment. I think it'd definitely be worth trying to get to an appointment to see a back surgeon - I know that's far easier said than done,but not everything can show up on x-rays,and in your case,I definitely think it's something that needs to be looked at/ruled out.

Here's hoping you manage to get some rest tonight

Nicki xx

sylvi profile image
sylvi in reply toNickijk73

Nicki sad to say i am down here again tonight. There is talk of the neuro-surgeon doing an op. on my back, though it is risking. I have rang the pain clinic and next Wednesday they are going to ring me up re;infusion so we will see from then on in. I did have a mri which showed my compressed and that was last year.

in reply tosylvi

Sending you lots of hugs Sylvi.

Nickijk73 profile image
Nickijk73 in reply tosylvi

Only just noticed this response sylvi - if they do start talking about the surgical route,as it really isn't as scary as it first sounds(and I'd take another back op over my old back pain any day of the week) you may be laid up for about 6 weeks after,but it's nowhere near as bad as a flare(from my experience at least) and I can only recommend the surgical route - let me know how you get on,and if they are talking about surgery,what type they're talking about. Before I got hit with PsA and the rest of the ailments that have gone with it,I was down the gym 6/7 days a week,was doing aqua pretty much every day (and it wasn't an easy class either) plus I was running 3/4 times a week for 30 mins at 7kph,along with a cross country programme on the treadmill after the run for about 35 mins,before doing a session of free weights - I'd never felt so fit,yet I'd had friends who had the same back op as me to start with,but because they didn't do regular exercise,they didn't get the true benefits from it - it may just start off as walking gently,but as long as you're moving and building up the muscles around your back/core,then your recovery should be fine,and you'll have nothing to worry about. To put your mind at rest,I went into hospital in agony,and on diclofenac,oxynorm/ OxyContin plus diazepam and I'm sure there were one or two other meds in the mix too,yet after being in hospital on a morphine drip(which I barely touched) for just three days,I went home on nothing more than paracetamol - and it stayed like that for quite some time. I really did find the ops to be godsends,and fingers crossed that if they are talking about that with you,then hopefully you'll reap the same benefits too Nicki x

sylvi profile image
sylvi in reply toNickijk73

Thank you for your reply. I will be honest i am no fitnuss nut but i walk round my close most day,but i do have multiple problems hence not exercising. I have a compressed disc and i am not sure what they would do to be honest.,But whatever they do i will do all the exercises they give me to do and i will fight it with all my power in me.xxxx

Nickijk73 profile image
Nickijk73 in reply tosylvi

That's all you need to do sylvi,stay positive,and keep moving - it's the best exercise to do,I was just going through my list to show you how successful the surgery can be(my first two were for prolapsed discs) and after doing my Physio and resting after the op,I happily went back to doing that because I was no longer in pain. As that's the goal for something they may have lined up for you,I'm hoping it will be just as successful for you xx

sylvi profile image
sylvi in reply toNickijk73

Thank you darling you have inspired me to carry on and if the op is offered i will take it.xxxx.xxxx

Gnarli profile image
Gnarli

So sorry to hear you are still feeling so I'll, Sylvi. Let's hope Wednesday's phone call brings better news

Jan

popsmith1874 profile image
popsmith1874

Sorry your not too good at the moment Sylvi , sending you big hugs and kisses from West of Scotland xxx

Deejojo profile image
Deejojo

Awww big 🤗 hun hope u feel better soon xx

Someonesmother profile image
Someonesmother

I understand your frustration I have been like this for over a year but it seems I may now have got some answers with a change in diagnosis. I hope they can figure something out for you

sylvi profile image
sylvi in reply toSomeonesmother

I am pleased you have some good news,it is few and far between for us isn't it.xxxx

helenlw7 profile image
helenlw7

Next Wednesday is an awful long way off! I feel for you.

Bully915 profile image
Bully915

Hi Sylvi if you remember a few weeks ago I was at my end with it too just bear it out all will be well

sylvi profile image
sylvi in reply toBully915

I do know and agree with what your saying and i have no intention of giving up,its just at the moment i am in so much pain from my back. It is so hard being us isn't it darling.xxxxx

Bully915 profile image
Bully915 in reply tosylvi

I was the same last night felt if had a heavy weight sitting on my body x

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