Still got spine problems!!

janie68

Hello everyone

I posted a couple of weeks ago about my spine. I wake up in terrible pain with it, I cannot stay in bed after, and it takes anything up to a couple of hours to go (with morphine). Well I phoned up rheumy nurse who said it doesn't sound inflammatory but mechanical, she's going to e-mail my consultant and will let me know the outcome.

Mechanical-what does that mean? I don't know and I wanted to ask you clever peeps. Does anyone have the same problem?

Thank you for reading

Janie xx

salamander

Mechanical means it might be something to do with the structure of the spine rather than inflammation. Hope you get a a referral through soon.

hileena111

Yes I agree with Sal.....mechanical as in slipped disc or something like that {not saying thats what you have} but I think of that as mechanical.
I'm waiting for an appt with a back specialist because I have things wrong with the lower 5 discs {mechanical}
Love
Hileena

tillytop

Hi Janie

I agree with Salamander and Hileena about the meaning of "mechanical" but wouldn't it be easier if these people spoke in plain English :roll:

Really hope you get a response from the consultant soon so you can start to get some help with this.

Thinking of you.

Love Tilly xxx

janie68

Thanks for replying

That doesn't sound too good! My spine sort of 'locks' so when I get up and move, it's bloomin agony! If I have a bad night with pain with my other joints and I'm tossing and turning, then it isn't as bad. I'ma bit stumped.

Janie

dorcas

Hi Janie

I'm sorry to read about your awful back pain..... and hope that you don't have to wait before being seen by rheummy or someone who can advise you about the cause.

Can your doc give you stronger pain meds.... and something to help you sleep.. until you see rheummy?

you must be exhausted Janie :roll: hope that you get some answers ...and help... soon.

Iris xxx

barbara12

Hi Janie
Are you sleeping in a different position to protect your other joints, sometimes this can effect your back, I had a back spasm last year, it was really scary, anyway to cut a long story short, it was down to the way I was sleeping.Rigid they said, not really sure what they meant.
Hope you feel better very soon
Love
Barbara xx

janie68

Well I spoke to the rheumy nurse and she e-mailed consultant.

Today I got a letter to attend an emergency appt for next Thursday. So now I'm worried as consultant is not one for doing this.
I suppose at least I may get some answers?

Janie xx

dorcas

Hi Janie,

Try not to read anything bad into why you've been given this appointment.
It may be that luckily this rheummy nurse has influence with the consultants and said you should be seen..... and being a ritux patient also means you have some added priority

It's really good that you don't have to wait too long and will get an opinion about the pain in your back. :!:

.... but I guess the days between now and then will seem like an eternity

you'll have to keep talking to us lot to keep your mind occupied.

Iris x

hileena111

Hi
Thats good that you have an appointment so soon....I know its silly to say dont worry...wont make any difference but try not to.
Keep coming on the forum as much as you are able and chatting


Love
Hileena

ironic

Hi Janie,

Sometimes it the waiting that get to us. Roll on Thursday and hopefully things will be a lot clearer for you.
Try and get some rest between now and Thursday.

Lv, Ix

janie68

I went to see the Consultant today. I've been told that I am having a severe flare up in my spine and the new treatment Rituximab is not working.

At this point I became upset but he was understanding about it. So when I meet the biologics nurse on 15th november we will be discussing the next step, the Dr has already written down some more to try, I know one of them is tozculimab (sp).

I have also discussed ill health retirement with him. He will write the necessary report for me to make the process expedient.

I am still very upset as I had hoped this treatment would be the one and I still don't want to 'give up' hope even though this RA has become pretty rubbish over the years.
I also have to see my GP to have some pain patches to help control the pain. :?

So now it will be the dreaded ESA when my SSP runs out, I do get DLA & of course my small pension, at 39 years old!

So this weekend I will be mostly feeling sorry for myself and eating comfort food

Janie xx

janie68

I have recently written an update on my current situation and there's me thinking that someone would perhaps offer me some advice or support.... I had hoped as you understand how it is and when treatments don't work, this is number 5 for me.

It seems I was wrong and has upset me even more.


See you around, I'm taking some time out so look after yourselves everyone

x

skezier

Hi Janie,

I am really sorry I didn't see your post and sorry its upset you that we didn't answer.

I really hope that they will find a drug that will help you but sorry the ones you have had are not doing the job. I don't know how that feels for the anti's but do so far for the rest.

You have to hold on to a hope flower and I am sending a load towards you as well.

I was medically discharged at 28 and though it was a small pension its really come into its own over the last few years as i get worse. For me there was no way of returning to work but I do remember how useless I felt back then and so hope your not? Its not anything you done its what this bone crap has done to you.

I am no good at the ESA/DLA thing, I just don't know how any of it works I am afraid but am sure someone will come along to help soon.

Again I am sorry I missed your post. You take care and sending you a belated ((( ))) Cris x

frogmorton

hi Janie

I am so sorry you feel so very bad.

I am also sorry not to have spotted your update - I am not often on after about 5 as I am doing rthe kids tea then.

So it is in the spine too? I hope that the new meds can be sorted very very soon for you. do you have a timescale?

I have some pain patches and swear by them now. At first i felt a bit sick (put the first one on at bedtine) but that passed v quickly and was only like morning sickness.

Please do not disappear from the site - I genuinely believ no-one intended not to spot your post. Honestly

Take care

love

toni xx

elnafinn

Hi Janie

I am so sorry that you are not feeling too good about things at this time, perfectly understandable too. I do hope that you feel a little brighter today than you have the past couple of days. It is very disheartening when we built ourselves up to believe that a certain treatment will work and it unfortunately does not. Please do not "give up" and think positive that the next course of treatment will be the right one for you. I hope that the patches you will get via your gp will help with your pain.

Do let us know how you go on.

Hugs,
Elna x

dorcas

Hi Janie

Been a bit awol myself so missed seeing your post. :oops:

No-one would intentionally ignore you....you really mustn't think that!.... it's just that we can be side tracked with other things.

I'm sorry your back is now causing you such dreadful pain...and that the Ritux isn't working. :? .... I do know how that feels 'cause we started with our drugs at the same time and the Inflix hasn't kicked in for me either! ... so if it doesn't start doing something and fast I'll be taken off it.

All we can do Janie is to move on to whatever the rheumy's suggest and hope for a reprieve. Go see your doctor and at the very least get some decent pain meds. The pain patches that Toni uses might be an option you can discuss?

We're here for you Janie... don't doubt that.

Iris xxx

janie68

Thank you so much Iris, Toni, Cris and Elna

Your words of encouragement have touched me, I did have some time out, and I am back

I suppose I am very sensitive at the moment, it's been devastating literally to be told that the Ritux isn't working, and to top it all I've seen occy health and decided to go for ill health retirement. So spoke to my manager, burst into tears! Spoke to hubby, burst into tears again, was teary with occy health nurse so now feel completely worn out :roll:

So I hope you are all having a good day, oh and I'll be skulking around more now I am waiting to be retired and put on scrap heap!

Janie xx

skezier

Hi Janie,

I'm glad your back flower!

devastated i do know, not over drugs but over the neck being maintenance only so this is it... Flower it does your head in but you might find something else and I so hoe you do.

hang in there and please keep posting cus I am often half blind but eventually do see things A ((( ))) and a hope Janie. Cris x

barbara12

Hi Janie
I am so sorry I missed your post, you poor thing, all those treatment and not having much relief from them.
Dont forget we are always here for you to talk to, we may be slow sometimes answering post, but we do eventually get around to them.
I so hope your rheumy can come up with something to help you.
Please let us know how you get on.
Love
Barbara xx

dorcas

Hi Janie so glad you're back :!:

It's really hard with the Ritux. not doing it's job, I know, but hope that whatever new combination of meds your rheummy comes up with will help :roll: :!:

....as for the retirement scrap heap!... you may find you're busier than ever!

chin up..

Iris xx

woodbon

Hi I have oa and have been ill health retired. I was a care assistant working for the council. I have a very small pension, but it all helps.

They call my problem 'mechanical' as it isn't inflammatory, I think. It makes me feel like an old car!!!!

Love Sue