spinal osteoarthritis.

[lillyanne]

Hi everyone. I have osteoarthritis of the spine with three vertebrae at the neck that have crumbled and nerve damage to my right arm. I also have five crumbled lower back vertebrae with three damaged discs. The bone is now rubbing on bone and I am practically unable to walk. I have tried for dla but was turned down so am appealing against their decision. The reason I am posting is that I went to the hospital to see the rheumy yesterday and he told me there's nothing he can do for me, and signed me off from his clinic. He's sending me to pain management and physio but surely there must be something else that can be done. I asked about operating but he said its to risky. I'm only 48 and dreading the though of having to live the rest of my life like this. Its the pain more than anything that gets me down although he did say that pain clinic will give me injections into the spine to help. Any advice from anyone who has had a similar experience would be gratefully received. Thank you .xxxxxx

[allanah]

I think it's maybe because it's OStEO arthritis and not rheumatoid or what they call inflammatory arthritis. I don't know if you know that osteo is a wearing down of bones where rheumatoid is a disease of the immune system that affects joints and organs in your body.

So unfortunately the medications for Rhematoid don't help osteo. I have both types of arthritis and they can medicate my rheumatoid but not my osteo.

Osteo needs painkillers, movement, and sometimes surgery. I had three discs collapsed and had some spinal surgery last year and if I was you I would ask to be referred to an orthopaedic surgeon or a neurosurgeon, they are the ones who helped me. GPS seem to be the best for pain relief, and physio is brilliant for spinal problems. I think the neuro surgeon may not agree that " nothing can be done!" I was given a huge list of what could go wrong but my surgeon said it hasn't happened to him! ,

Not trying to move u from here but Healthunlocked may have an osteoarthritis site to help you a bit more than a Rheumy site? Also Arthritis Care are great with all forms of arthritis too.

Just the drugs we use here wouldn't help your type of arthritis. Did u know there are over 200 types of arthritis.

I can only say my spinal surgery really really helped me, I had just about lost the feeling in my arms and the op completely cured that and the pain .

I really really sympathise with you so I think get to ur GP and ask him to referr you to another specialist and if you haven't had an MRI scan they might suggest one, and let us know how u get on , A xx

[Jill60]

Hi gals, and I thought I had been thru a lot regards my spine....had two spine ops, one in Jan this year.....op called Dynesys......took ages to recover, but it's kinda ok, as long as I'm careful....can't do too much housework, if any, but at least that sharp pain I no longer have........I feel for you Lillyanne being told that they can't help you, but I would ask to be refered to someone else for second opinion...don't give up ok......also Alannah, wow u have been thru it too.....anyway, I wish you both well x

[allanah in reply to Jill60]

Thanks! Think I need to go back for my lower back now!! Oh well lolxx

[lillyanne]

Thanks so much for your replies. That's really helpful. I am definitely going to ask for a second opinion but did not know about asking to see an orthopaedic surgeon so will ask for that too. Thanks ever so much for your help it really is appreciated. xxxx

[allanah in reply to lillyanne]

Let us know what they say! Xxxx

[earthwitch]

I have a friend who has really bad osteoporosis that has caused her spine to be really crumbly like yours as well as having really severe pain. She now goes to a pain clinic regularly and has injections into her spine, and they really do help her manage.

I think if I were you, I'd make very very sure that they had actually eliminated inflammatory arthritis as a cause - and given thats its your spine it would be spondyloarthritis (or ankylosing spondylitis) that I would be particularly asking about. Also because your spine has got so crumbly, make sure you have been thoroughly checked out for malabsorption problems that may have led to the bone getting too soft - the main one here is coeliac disease, but inflammatory bowel diseases like crohns or colitis could cause malabsorption too, and they often go along with inflammatory spinal arthritis (or spondyloarthritis).

You can ask your GP about the coeliac testing, and about checking your bone density if it hasn't already been done, but I would think you would need a second opinion from a different rheumatologist just to make sure - ask your GP to refer you to an ankylosing spondylitis specialist to rule out spondyloarthritis for sure. You could also ask your GP if they would consider a two week course of steroids to see if it has any effect on your spinal pain - if it does, then thats another pointer to it being inflammatory (though there is obviously more permanent damage there as well if you are having all those fractures).

[Toitoise]

Hi, my 86 year old neighbour has a crumbling spine and she is prescribed by her GP Morphien patches, which helps so maybe that may help you while your waiting to see specialist. Hope you get the support you need and things improve. Take care xxx

[slf4]

Hi!, I have Osteo in my spine too as well as Ra. I also have Coeliac disease & Osteopenia. I have 'crumbly' joints in my back too & the pain is unreal...also been told theres not much they can do with my back. Please dont give up, I know how hard it is... Asking for an MRI is a good thing, as it would show anything else going on. I wish you luck, xx

[Hidden]

Definitely ask for a referral to a specialist spinal surgeon, they will order an MRI before they see you and then be able to talk you through your options - and there always are options. I was told by a registrar that there wasn't a good success rate with 'necks' surgically - that made the surgeon furious! He said he would never give a generalised sweeping statement about someone else's speciality.

I've now had the 'steroid bath' type spinal injection, for my lower spine, and it has given considerable pain relief:-} I hope that you have been prescribed something like Fosamax for strengthening your bones and preventing further deterioration and chewable calcium and Vitamin D.

Hope you now feel both supported and able to push for an appropriate referral - your GP can refer you to a spinal surgeon via the 'Look and Book' system whilst you are in your appt with him/her.

Cece x

[beauty96]

I sympathise and agree with all written above. I can also agree with making sure you have the right nutrients for keeping bones and joints in good health. [calcium, magnesium, boron, copper, vitamin K and D3 etc] I suggest you also have a word with the Osteoporosis Association who I am sure be also able to help you. I do not know where you live but a friend was told they could do no more for her in Lincolnshire and she found help and is still being helped at Osweltry Hospital and I have read of good results at Exeter. Talk to your GP as they will be able to look up and see if anyone further away from where you live might help. This is something only you can decide on based on the medical help offered.

[lorann]

I also agree with all the suggestions listed above. I have had 8 spine surgeries, including my neck, which has never given me any further problems. I had some nerve damage in my left arm, causing me to be unable to pick up tthings, or to hold things without dropping. At age 46, my Rheumatologist referred me to an Orthopaedic Surgeon, saying these are the guys who can fix these things. I was able to return to work after each of the first 4 surgeries, but then had to take disability leave, as the Psoriatic Arthritis and RA had gotten so much worse generally.

I can hardly believe that previously mentioned doctors ould say nothng can be done, without even investigating, or referring you to one who would be better able to make a decision.

Don't give up and suffer, that is ludicrous!!! But please do pursue it, and all the best of luck. Loret

[lillyanne]

Just wanted to update you all and thanks so much for the advice. I went to see my g'p today and he was really sympathetic and is referring me to an orthopaedic surgeon. I would not have known to ask if you hadn't have told me so thanks so much to everyone xxxxxxxxxxxxxxxxxxxxxxxxxxxx

[allanah in reply to lillyanne]

Brilliant news! Hope u get your appointment soon, keep strong xxxx

[zziggy]

I had a caudal epidural nerve block for the first time on weds and so far have had huge relief from the pain. I was dreading it but it wasn't anywhere as bad as I feared!

[Patsyjoray10 in reply to zziggy]

Me too! It was wonderful

[Whyme2]

I also have stenosis from OE of cervical and lumbar spine plus its very debilitating. i also have RA, yet, to be honest RA is less painful and can get alleviated unlike the OE, was told painkillers, and surgery is only treatment. My neuro surgeon ready to operate, but I am hanging in there, trying everything else first. Rheumy arent really interested as they can do nothing, read the internet and try glucosamine and Chrondroitin.

[Jan2005]

I've come across this post after googling my condition which is similar to yours. I am now 43 and was diagnosed at 35.

I am now sufferinf even more and repeatedly going back and forth to gp. Been told today that they will not operat as it is L 3 4 and 5 so spinal fusion would give me no mobility.

If you are still receiving emails I would love to hear from you.

Jan

[Fibromepainless]

Hi I have the same description off health problems and arthritis in both knees, I would like some more help .x

[Fibromepainless]

Lol

[Rheumo]

Hi, I have the same as yourself,and was also told nothing can be done, I am in constant pain, having had RA since I was 8 and a half, had my first operation on my ankles at that age. I am on 20mg mst per day, oramorph, gabepentin and Paracetamol, they all help for around 4 hours, then I take 2 paracetamol, and again 4 hours later. My hands are awful my little finger on both hands is now under my ring finger and middle finger, my elbow s and neck hurt as well, I was told all that stems from the spine!

Good luck, try to stay pain free, not easy, but is workable. God Bless

[nomoreheels in reply to Rheumo]

Hiya Rheumo. Just a quick message to say that the OP hasn't been active on the site for 5 years so not sure if you'll receive a response. Best to check when a question is asked prior to replying, or if a member is still active, you'll find an approximation next to their username, in this case 7 years.