23 and already diagnosed with Osteoarthritis of the Spine :(
Posted , 7 users are following.
I have recently been suffering with back pain on a regular basis - in the last few months of cold weather I've even had to have time off work because it physically killed me to get out of bed - which is worrying for 23 years of age!
Had an MRI scan last month and i've just found out of i've the beginning stages of Osteroarthritis of the spine!!
Unfortunately for me, I have to wait 2 months before I get an appointment with a spinal specialist to talk phsyio treatment and injections (worst case scenerio apparently) and now I'm wondering what I'm to do in the mean time regarding pain relief?
I am already prescriped 15/500 Co-Codamol and Naproxyen rather than the 400mg Ibruprofen - I've found walking eases my pains alot but being in a sitting down office job, I cant spend all day on a walk.
I'm finding it difficult coming to terms with having this at such a young age, mainly because of knowing its going to get worse as I get older and I'm yet to experience Motherhood!
Any suggestions/advise or ideas on how to make this more of a bareable condition are most welcome..
1 like, 10 replies
susan67756 kelly91664
Posted
I was diagnosed with hip OA after an xray report showed "degerative changes in both hips". I was 42 at the time - very active. I'd been to a physio because my hip had suddently siezed up and he eventually advised me to get an x-ray just to rule out anything structural.
That ws 8 years ago. The diagnosis never seemed to fit and I spent the years researching and consulting all sorts of experts to try to get to the bottom of it. (I'm now 100% fine and living an increadibly active life - way beyond what most people of my age manage).
One thing I can tell you is that there is no correlation between pain and x-ray findings. A lot of people have degenerative changes and no symptoms. Also, a lot of people have pain and other symptoms but no degenerative changes. The significance here is that there's always a good chance that the degenerative changes are in fact a result of something else - something soft tissue related. Resolve the soft tissue problem and the wear of your joints stop. I don't think that it necessarily follows that because you have OA at age 23 you're going to go downhill from here. Get a few opinions and make sure you find out for certain why you're having these problems.
You see, I'm not knocking specialists. They are of course very good at what you do. But if you get sent to the wrong specialist (for example a surgeon) then they could miss a very curable soft tissue problem.
For the pain how about going for a massage? Ideally someone knowledgeable about trigger points and stretching techniques such as ART. That might also give some clues as to what's wrong. Perahps even from a private physio that comes with excellent recommendations. It'd normally only cost around £35 and you often get access to skills that aren't available on the NHS.
kelly91664 susan67756
Posted
This is my 3rd diagnosis! My GP originially suspected I had a cyst on my lower spine / sacral .. then thought it was swelling because I've been suffering with hip problems (which I have Cortisone injections for regular)
I've battled the NHS for months and an MRI was the next stage.
Personally, I think because of my hip problem, I spent months over compensating for my right hip which consequently means I have been walking slightly slanted for around a year. Possibly causing the problem I have now with my back.
I'm told I have cartilage which has worn away and (unsure the correct word he used) my bones are grinding together which is why I'm suffering so badly.
Who knows, the Spinal specialist may tell me it's repairable and not as bad as I have worked myself up to think.
I will try your suggestion of seeing a private physio! I'll give anything a go!
susan67756 kelly91664
Posted
I'll give you a little more detail about my problem as there may be more similarities than it first seemed.
I won't go through the whole long story, but my symptoms started as a sudden onset mildly stiff hip (age 42) and later I developed shoulder impingement in both shoulders, inability to move my neck much (driving got difficult because I couldn't look behind me at junctions) and most recently severe sciatic pain that couldn't be controlled by drugs.
All the doctors saw was a middle aged women with hip OA that should accept life as a partial invalid. They wouldn't look past the degenerative changes in my hip that showed up on x-ray. The rest of it .... they just shrugged and said "it often happens when you have hip OA". So I researched things for myself.
My problem turned out to be a sacral torsion. Basically, during normal gait your sacrum (the base of your spine) and the innominates (your pelvic bones) move through a cycle - along with your spine which moves in relation to your sacrum. Sometimes - for various reasons including habitual movement patterns, injury etc - the sacrum can get stuck at one point in the cycle. The attached photo shows how mine got stuck. This is a very subtle thing - not as obvious as it appears in the photo. But it can wreak havoc with spine, hip and shoulder joints. The whole body really.
No one picked up on this with me. Instead of looking at my body as a whole and how it was moving they just chased around after the pain.
I eventually got my sacrum leveled out and hip, spine and shoulder problems disapeared. At 50 years old I'm cranking out pullups, doing olympic lifting - stuff that most people half my age couldn't do.
So - you're 23 years old. They'll be less inclined to just give up on you. But fight hard and don't be too quick to accept a diagnosis with a poor prognosis. Also think long and hard if you're offered surgery. I've obviously talked to lots of people with similar problems in my quest to find a solution to mine. All too often the experts look in the wrong place for the source of the problem and end up making things worse.
Part of me thinks go to a chiropractor as they're best trained to pick up on any kind of SI joint problem/sacral torsion. The fact that you've had problems in the hip/sacrum/spine suggests they're all conneted - which could well mean some kind of misalignment of the pelvis. But chiros can be such con-men. If you could get recommendations for a good one locally it might be an idea. Just don't buy into a plan that involves umpteen expensive sessions!
In my experience the NHS just don't have the necessary procedures/experts in place to pick up on these weird problems that seem to ripple through the body. At least learn as much as you can and go armed with LOTS of questions when you see the consultant. If you can afford it then get a couple of private opinions first (so chiro, osteopath, physio) just so you have intelligent questions for the consultant. Best to go prepared rather than be chasing about AFTER your appointment trying to find answers. You want a few alternative diagnosis to throw at him f you don't like what he comes up with - force them to take you seriously.
Best of luck and keep fighting until you get a good resolution.
susan67756 kelly91664
Posted
Yet once I got my sacrum untwisted and my pelvis levelled out (through stretching, exercise and so on) that hard end feel went away and full rom restored. Joints were jamming because everything was pulled out of place.
Make absolutely sure the same isn't true of your spine before accepting what the experts say about bones in your spine rubbing together.
kelly91664 susan67756
Posted
I dont suffer with my shoulders or neck (at the moment) its just a nagging pain lower back and when im freezing cold its ubareable.
I'm going to battle it out and make sure they've looked at every scenerio before telling me I'm definitely an artirits sufferer because it seemed so quick to come back with arthritis after so long waiting for them to actually do something. Obviously I don't want them to diagnose what they think is the 1st answer, prescribe treatment and lose me through the system as forgotten!
My hat goes off to you for battling it out and getting what you wanted and its encouraging to hear that someone twice my age has the stamina of someone my ge... I feel 60 already !
Exercise is something ive never been overly interested in but my partner is going to come swimming with me and we've a dog to walk just to keep me moving and try help.
I live 2 mins from a chiropracticioners so I'm going to book an appointment and see where that gets me.
Thank you so much for sharing your story. Its definitely encouraged me to not back down to the 1st diagnosis they rush to!
TreatMeGently kelly91664
Posted
my first diagnosis at about 18 - included osteoarthritis and non specific arthritis.
its been a long journey but the short story is that I am 48 and still quite fit
xrays of my spine showed osteoarthritis and growing bone spurs a
from the spine to my back ribs.
my dad suffered from Ankylosing Spondylitis and later on I new from lower back pain from limping with hip pain that mine was related.
my mother sent me to a clinic in Surrey to see a doctor called John Mansfield that was investigating the link between food allergy and various form of arthritis - the study was published in the Lancet in 1986.
Dr Mansfield put me on an very restrictive elimination diet that I followed for over 2 weeks - I felt much better at the end of this but "fell of the barrel" and didn't revive what I had experienced until age 26. I have been wheat, corn, and mostly cows dairy free for 22 years now.
since the internet has grown I have strived to understand how my hips, back, sternum, shoulders have improved just because of diet change and have read dozens of medical studies from the ncbi website and other medical journal sites.
According to medical research - there are two main causes to autoimmune diseases
1). A progession of failure to recognise foreign proteins from self tissue proteins
2). Intestinal permeability (aka leaky gut) leading to no 1
in 2009 - a professor / researcher called Alleso Fasano at University of Maryland has discovered that gluten (protein called gliadin) in wheat causes intestinal permeability in all people - not just celiacs. Btw there is a great talk by this doctor on you-tube
also in recent years Dr Ebringer at kings college hospital has discovered that certain gut bacteria can cause some gut bacteria to fuel autoimmune RA and AS - there are other studies for other bacteria.
so my story in short is - research, experiment and don't believe anyone that says diet has nothing to do with arthritis. Lastly diet change can change you gut bacteria - and can limit intestinal permeability.
angie95127 kelly91664
Posted
kelly91664 angie95127
Posted
They wont give me anything syronger thsn 15/500 cocodamol or naproxyn ibrupofren until I've seen my specialist which I was told could take 2 months!
The injection helped my hip problem but that wasnt down to arthritis.. it was caused by too much fluid causing irritations, clicking and painful popping. Unfortunately I've experienced 2 different problems at once in 6 months. .
Now ones at bay ive got the oa to deal with which today I've suffered really badly and its awful! How you ladies cope is beyond me!
gemma1994 kelly91664
Posted
Hi Kelly!
I work in a office too!
I'm 22 and have finally been diagnosed with sevre spinal arthritis .. I say finally like it's a good thing however I've waited 4 years to have this diagnosed.
I probably went to the gp over 3 years being told I have back pain after 2 years a locum doctor ref me to have a X-ray which showed slight curvature of my upper spine(causes no problems).
I'm lucky to have private healthcare, not satisfied with the 'back pain' diagnosis I asked to be revered.
I have now been under this consultant for around a year. I have tired Physio, with injections.. didn't have long term relief, for me I had 2 days where I couldn't walk from being numb, they adviced me that they did work and from this they can do further treatment. Again Physio never worked and I then had major surgery where they put a suspension device in my spine to take the impact of daily life. Following this I have had 14 weeks of Physio again which isn't working, the procedure itself worked for 3 weeks. For these 3 weeks I wasn't working I was at home on tramadol.
They're now looking into another procedure where they're burn my nerve endings off (easy way to describe) so I don't get the pain signals to my brain along with more nerve block injections.
This is all to avoid the inevitable, having my spine fused. Both me and my amazing surgeon believe I am too young but this is what I will have to have.
Are you at the point of having a fusion/ had it fused yet? Some advice and someone to talk to in the same situation would really help x
jitendra000557 kelly91664
Posted