Advice needed on neck and back issues pls

suzygirl

Hello, my neck has been flaring for nearly 3 weeks now, I have again run out of painkillers. So have a gp appt in the morning. I take MST, tramadol as needed and gabapentin already, so feel I shouldn't really be in pain. Standing is excrucutiatingly painful and has been for a couple of years now, due to lowerback problems L5/S1. I have to lean forward to ease the pain and sit with my legs up. If I sit with my legs down, the leg goes numb or starts to jerk wildly. I just live with it.

The neck is often painful and I have loss of movement. C3/C4 and C7. The muscles spasm and further down my back I have a numb patch. The degeneration has caused scoliosis. This latest flare means walking causes me to become nauseous and dizzy. A car ride makes my neck burn and increasses the feeling of pressure, the general headache it is causing, is grinding me down. NOTHING is shifting the pain. I had a couple of days, fully dosed up, spaced out when it islightly eased.

What do I do? I am not very good at explaining things and unsure how to get across to gp how bad it is, without sounding like a painkiller addict or hypochondriac. Should I ask for the referral to the orthapaedic surgeon now? I turned it down before as the thought of surgery terrifies me.

The rheumy nurse has referred me to physio, and advised me to wear a collar. The collar does help slightly, but I am worried about weakening the muscles. I am wondering if wearing it in the car may help. Can you drive whilst wearing a collar? My hubby is trying to put me off driving at the moment, he doesnt think I am well enough.

I would appreciate advice. My neck seems to have aggravated my lower back. Now sleeping is painful, sitting, walking anything. I tried to get an emergency appt, but couldnt so have to wait till tomorrow.

Shall I go, what should I say and have you any advise? Sorry its so long.

hileena111

Hi
The first thing that caught my eye was you refused an ortho appt.
If you can get one.....get one.....please. Even if he does say surgery....you dont have to accept it. He might have other suggestions and might not mention surgery.
I have OA and kypho scoliosis.
Take care
Love
Hileena

elnafinn

Hi Suzy

Your symptoms sound horrenduous. I am so sorry. Have you had an mri on your back recently as this should be done, to my way of thinking. If you have vertebrae pressing on your spinal cord like I had, with horrid symptoms, of pins, needles, not walking well and so on it is best to know this asap so you can hear what your options are.

I would get referrred to a specialist asap. It is a pity you did not take up the offer earlier. No one can make you have an op if that is on the cards and you do not wish to do so but at least you will know what is going on.

You ask what to say at your appointment...... Say what you have just told us. This is all impinging greatly on your life. My view is you should be referred to a specialist.

Elna x

suzygirl

Hi hileena and elna, thanks for your replies. I should have taken the offer of an ortho appt, but at the time (2yrs ago) I was under so many other consultants for my SLE, APS and resulting probblems, it was getting ridiculous.

I have had numerous MRIS on my neck and a couple on my lower back, latest 2 years ago, which appears to show disks resting on spinsl cord, which is why I am in so much pain. It has slowly gotten worse, but was pushed to side lines because of my other symptoms from inflammatory arthritis etc. Now it has come to the forefront, and I can't 'ignore' it any longer, no matter how much I try,

I know I should deal with it, but I am terrified of surgery or injections etc. Ridiculous, I have had effective joint injections. I have weakness, drop foot etc etc from the disk problems, but I am scared and in denial.

I am ashamed to post as you all have so much more going on than me, and deal with so muchmore, but this really gets to me, and I am not handling it well at all. Why can't we just have 1 thing, instead of loads.

Poppyg1rl

Hi Suzy,
I'm so sorry it's not getting any easier, I know you've been really suffering hon. Can you write down (or if that hurts get someone to write it down for you) all the things that are causing you pain, please tell the Dr everything that's hurting. There has to be something that they can try? I'm thinking of you Suzy, and sending you big but gentle hugs ((())) Xxx

elnafinn

Hi Suzy

So you have vertebrae pressing on your spinal cord too. It may not be what I had but presumably similar. I did go for the op to move the 2 vertebrae away from my cord, because my spinal cord in that area was getting very worn (much thinner than it should be) and unfortunately the cord does not repair itself. The consultant told me that it had been happening over a long period of time, which I do believe as the symptoms had been noticed by me a few years back but had got quite quickly worse. He told me that if I did not have the op my symptoms may stay the same and get no worse but could worsen in time too - the unknown. If I had the op then my symptoms would not get worse but there was no guarantee that the damage that had already been done would improve. It could stay the same, get slightly better or surprise him and me and get very much better. 4 months on, there is only very slight improvement. He said it could take up to 18 months. The other hiccup is that once you start to have work done on the spine, more ops may need to be performed later on as the vertebrae below can begin to weaken. That is my story so far.
I had hoped that injections would make it go away at least for a time, but unfortunately I was told that the damage that had been done could not be helped by any injections.

Elna x

suzygirl

Poppy, Elna, thanks for your replies. I think my part of my problem in dealing with it all, is that I know that ther is no quick fix. I am
scared of surgery or any other procedure, but am aware that thinjgs can not carry on as they are ( Whiskey is not an approved nhs medicine, if only !! :shock: )
It just seems all too much, I have just started AZa which is enough for anyone, let alone all this. I feel overwhelmed, and that it is too much. Imean I still have lifes **** to deal with. And believ me , that shows no sign of giving me a break. Anyone want to dopt a teenager???

Seriously, this is the only place I have to vent. I don't 'complain' so this is my only outlet. Its half term and a busy week, you just have to get on with it, . . . . ..

suzygirl

Well, am just back from the gp. He could tell from my symptoms which disks were the problem, which correlates with the mri. He has referred me to a back triage clinic run by orthapaedics and physio. He would like me to see a spinal neurosurgeon :shock:

I explained I was scared and he said it was only like coming to see him, that I would be given advise and that it was up to me whether I took the advice or not.

He has upped the gabapentin and if that doesnt help, he has another option in mind. He said to wear the collar in the car, no driving and to wear the collar at night. I said I was ok at night, but he said it was best to. He advised best not to wear the collar in the day as it will weaken the muscles.

Just going to the gp this morning has hurt so much :shock: am hoping the painkillers kick in quickly. Not sure how I am going to manage if things don't improve.

Shooter

suzygirl wrote:

Hi hileena and elna, thanks for your replies. I should have taken the offer of an ortho appt, but at the time (2yrs ago) I was under so many other consultants for my SLE, APS and resulting probblems, it was getting ridiculous.

I have had numerous MRIS on my neck and a couple on my lower back, latest 2 years ago, which appears to show disks resting on spinsl cord, which is why I am in so much pain. It has slowly gotten worse, but was pushed to side lines because of my other symptoms from inflammatory arthritis etc. Now it has come to the forefront, and I can't 'ignore' it any longer, no matter how much I try,

I know I should deal with it, but I am terrified of surgery or injections etc. Ridiculous, I have had effective joint injections. I have weakness, drop foot etc etc from the disk problems, but I am scared and in denial.Suzygirl you have nothing to be ashamed of pain and problems are what this forum is about good luck with the meds Steve.b

I am ashamed to post as you all have so much more going on than me, and deal with so muchmore, but this really gets to me, and I am not handling it well at all. Why can't we just have 1 thing, instead of loads.

kellerman

You seem to have a good Gp...thats a bonus.
He's perfectly right its just after all another doc you will be seeing but this time some-one who deals with your problems on a regular basis.
Nobody can force you to have anything done if you don't want to.

I know its a pain going backwards and forwards to the hospital.
We have to...it is for our own benifit.
I have to go tomorrow..Monday and Tuesday all different departments and believe me I could do without the hassle.

Next month my daughter has an appointment with a rheumy and I'll be going with her as well.
I do hope the meds help to dull the pain and make you feel a little better until you see a specialist.
May

suzygirl

Thanks May and Steve, I am hoping the painkillers work, as I can't manage like this at the moment. No comfortable position or relief, not really sure what to do.

Thanks

tillytop

So sorry for coming late into this thread Suzy but just wanted to let you know that I am thinking of you and really hoping that you can get some relief from the pain soon.

Lots love and ((()))s

Tillyxxx