just been told ive arthritis of the spine

laceypuppy

hi im new to this ive just found this web site. ive only got diagnoised with arthritis of the spine last week im only 34 married with 4 kids my back drives me silly but ive been referred to c physios and orthopaedic surgeons. im really scared of what the future holds im already in pain find it hard to walk about without stopping or sitting down as a keen camper and walker this drives me silly. adviced really wellcomed thanks

eckstardeluxe

Hi Lacey, welcome to the Forum and the "club".

I am 33 with 2 young children 3 and just 1. I was diagnosed at age 32 with OA spine and sacral area. This is secondary arthritis meaning it was caused by trauma to the bone, mines being a rare severe illness in childhood. Firstly do you know if your arthur is secondary like mine or primary ie due to wear and tear?

Did they tell you what stage you are in? There are 3, early, advanced and end stage. I found out I was moving into end stage when I was diagnosed. I had OA for 21 years progressing through the stages in pain just assuming it was from my previous condition, never thinking arthritis. If you are earlier on than myself it may reassure you to know I got this far without help meaning it shouldn't get worse for now. People have varying degrees of pain though so it really depends on your threshold. The advanced stage from my opinion is the worst, this is when you wake with stiffness that lasts about an hour and affects you badly when standing or walking.

My arthritis, I believe is under control because I have had good discussions with my Dr to get the right treatment, obviously I still get pain on waking until the meds take affect and after doing anything strenuous. Did you have an MRI? This would confirm any nerve damage or similar. This is where my problems are. I also have spinal stenosis and bulging discs due to the advanced nature and this is what gives me pain. It would be important to find out if your OA has caused anything similar as this is operable, sadly not for me as too advanced.

The future seems bleak at first, especially when you have children, you bog yourself down with thoughts of what you can't do and of your children seeing you in pain. But slowly you come to terms with it, getting the right help with meds is the most important thing and also coming here and sharing. I have looked back at my first post here recently which was just a few months ago and cannot believe I was that person, so frightened and angry. This forum has really changed my outlook. The most important thing is, and I know it will be hard if like me you have always been super active, listen to your body. Stop when there is pain, ask for help when you need it and most importantly slow down. On the good days, don't rush round trying to catch up on ironing, cleaning etc, you will suffer for it.

From my experience everything clicks when you learn about your condition and learn to accept it and try your best to deal with it. I'm not saying life will be all sweetness and light after this, I have my days where I am lying on the floor in agony because my sciatica is worse than back labour. There are days there will be tears because you can't walk round the supermarket and enjoy it because you are too sore. But then there come some positives. You realise this is your chance to show your kids what a strong Mum they have, one who copes with dignity with their disability, something that will affect them positively as they get older. They will never be judgmental of people with disabilities but respectful to them. Don't be afraid to cry, it's good to let it all out now and again. Sorry for the long post but I know how you must be feeling right now and I send you my ver best wishes. But please see your GP and discuss meds ASAP. x

Eck

ninakang

Hi Laceypuppy

Welcome to the site, it's nice to "meet" you. I'm sorry you're in so much pain but you should be referred to a consultant soon who will be able to discuss pain management with you. There are also lots of really good articles on this site about coping with pain and arthritis.

We're in a similar boat, I'm 32 and have 3 kids aged 10, 7 and 5, so keep coming on here to chat to us.

Nx

skezier

Hi Lace puppy,

I got badly injured a few times as a teenager and then got a big injury in my 20's and my back needed to be operated on. That’s when I found out I had O.A. in my spine. I don't know about you but I was worried sick about how it would progress BUT although I have made it to the advance stage and its in my neck as well it hasn't been as bad as I feared!

They need to see exactly what is there and if they can do anything and then you need the correct pain control and you will be surprised just how long it will be before it stops you from walking and camping. You may need to make some compromises but don't panic as I found it is something you can fight a bit before it stops me from living my life. There are bad days but I just up the tablets and go slow. I promise you it isn't always as bad as you think it will be. You just need the correct pain control and I think I am a 'bit' bloody minded with mine, for me that has helped no end. See what the physio's and consultants come up with and also ask for some pain control from your GP and don't look to far ahead until you know exactly what is going on in your back. take care, Cris

dachshund

Thank you eck.
Your letter was very interesting as i have acheing in my spine and hip's and leg's from when i get up till when i go to bed the only way to stop it is to sit down.i have cerebral palsy artifical hip and knee doctor's tablet's dont work any more i'm having a scan on the 22 june i have a mobility scoota it's lovely. joan xx

woodbon

Hello, I'm so sorry to hear your diagnosis. It must be hard to cope with 4 kids without the OA on top. Its sounds as if the medics are going to do something for you. You are in shock at the moment and its not the best time to try and look to the future, I know its hard not to but your mind is in circles, I expect. Try ringing the Helpline number here. They have some very useful information they will send you as well as talking to someone.

Also people on here have children and arthritis and I'm sure they will be along soon and offer more help then I can. Love Sue

marie48

Just wonder how do you get diagnose with arthritis of the spine? I am sure I have got it having suffered constant back ache for over 10 yrs but have never been diagnosed. Mild wear and tear I was told at the beginning and it is usually painless. I do not think the GP will do a scan as I have already got a history of cervical and generalised arthritis. Just wonder why I have never been diagnosed. I did raised the subject of scanning my back but GP said it will serve no purpose.

justinbarrow

sorry to hear about your spine i am 32 and having it bad at the moment having kids it hard to cope. keep us posted.