Problems diagnosed as Osteoarthritis CAN be cured in some cases.
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If you're a proactive individual that's been diagnosed with incurable Osteoarthritis it's *possible* that you can in fact beat the diagnosis and get back to full fitness and functionality. It happened to me.
I should add that I was diagnosed at age 42 and was very fit and active at the time. I think it might be very different for older individuals, people who's condition is advanced, or people that don't enjoy exercise.
Here's my story. I can't make any promises that it'll be the same for you. But I will if people are interested share some of the resources that helped me to beat what I considered to be a life shattering diagnosis, for which I was assured there was no possibility of a cure. I don't know whether to believe I was misdiagnosed and never actually had Osteoarthritis, or whether they're wrong when they say Osteoarthritis is incurable. What I can say is that I was told my symptoms were 'classic' and that the diagnosis was certain - that my symptoms couldn't be explained by anything else. The whole area is so poorly defined and slap-dash that it's impossible to tell. Either way, it means there's at least hope of beating it if that's what you want to try and do.
I've spent 8 years battling against the people that were hell bent on brow beating me into believing I had Hip Osteoarthritis when I knew I didn't. My real problems were ignored - I was essentially left to rot. I was treated like an idiot. Told I researched too much. That I was in denial. Told that I was making my problems worse by training to keep myself fit, strong and active. Told I should swim and cycle and give up all other sports. I was asked repeatedly "You've had numerous experts try to help you - don't you think one of them would have succeeded if this really was curable?".
Finally I've been vindicated. I figured it out for myself. A simple, treatable muscle imbalance causing all of my problems. Obviously I wanted to let the people know that have tried to help over the years. I expected them to be amazed - a breakthrough that could help lots of people. These cases that we think are incurable can in fact be fixed!!
My excitement was met with apathy: [paraphrasing]. "The reality is that most people are inactive and unwilling to put in the work needed to address muscle imbalances like this. Even if the correct diagnosis was made, for most people the end result would be the same. People who are willing to put in the work necessary to reverse the condition are so few and far between that they aren't statistically significant to make it worth the cost of training and research. We were unable to solve your problem because we've not been adequately trained to do so. But well done for hanging in and figuring it out yourself."
Why wasn't I told this BEFORE I discovered the solution for myself? Why did they try to convince me I had incurable OA when they knew how determined I was to beat it?
Here's the reality as I now understand it (as it's been explained to me). This may not reflect every health professionals view, but it is a summary of what I've been told by various health professionals:
GP's are responsible for diagnosing OA. Yet they know very little about bio mechanics (unless they've got an interest and educate themselves).
They don't understand the condition in great detail, but they don't need to. They're working to a script. It seems not to be widely known who writes that script (so who to go to with questions or doubts)...which is a little bit of a worry.
Some know that often it's a misdiagnosis - more forward thinking GP's are aware that it's frequently a treatable soft tissue issue. But like the physios, think it doesn't matter too much as for most patients it makes no difference. They lead inactive lifestyles and any attempts to restore them to full functionality will fail. There is little point in wasting resources trying to give an accurate diagnosis when the end result will usually be the same regardless. So OA is the 'catch all' category you put them in. There is no cure - you manage with drugs and operate if and when necessary.
Even when someone is in great shape, keen to be proactive in their treatment and has an active lifestyle worth preserving there's nothing to be gained in finding the correct diagnosis as there is no one to refer them to to get it fixed. People worth bothering with (because they can be restored to a good, active life) aren't statistically significant enough to be worth the research and training needed to put systems in place to help them.
So, the GP's make the OA diagnosis despite not necessarily knowing much about OA. Who are the specialists then if you're determined to find the real cause of your joint stiffness or pain? Well, there's a bit of an oversight there. There is no one.
Orthopedic surgeons know about surgery. If your problem is an easily curable soft tissue issue they probably won't know enough to detect it. They may well put you under the knife unnecessarily. Or tell you that you have an incurable problem that will deteriorate over time - that your active life is over (that's what happened to me). But this is more a case of them forcing your problem into something that fits their specialist knowledge. Not a proper diagnosis.
Then there's physios. They aren't trained to detect and treat curable soft tissue problems that lead to joint wear and might otherwise be diagnosed as OA. However, some are better than others. Some might actually be very capable. It's pot luck. I think it's unlikely to find someone with these skills working for the NHS, but I may be wrong. I have been told (by a physio) that the failure rate in these cases is 99% within the NHS.
There are people out there that do know how to diagnose and treat these soft tissue problems. And there's plenty of info on this on the internet that you can use to help yourself. It's down to the individual to separate the wheat from the chaff. Contrary to what we are led to believe, OA isn't an incurable degenerative disease. Strictly speaking it doesn't exist. It's a 'catch all' diagnosis used to put people with joint problems in when there aren't resources and training to find out and fix what's really wrong with them. Contrary to what we're led to believe, there is no category of the medical profession with expertise in the multitude of conditions commonly labeled as OA. If you think you've seen an expert and had a reliable diagnosis of OA - think again.
There is no easy fix - that's true. There is no way of knowing if yours is a curable soft tissue problem without trying to fix it. I'm led to believe that official research into OA is centered around keeping this 99% of people that are deemed incurable (because they are perceived to be inactive and unwilling or unable to adhere to the required rehab plan), as pain free and independent as possible at minimum cost. It's simply not cost effective to put time and effort into finding the cause, the cure, or training people to make diagnosis and cure soft tissue problems in the cases where how to do so is already known by some.
But there are people out there that have figured out how to diagnose and cure at least some of these cases. Some speculate that all OA is initially a soft tissue dysfunction. However, this is mainly in the private sector - or perhaps in the NHS, but on an unofficial level. You're faced with the dilemma of separating the fakes from the real deal. Most will claim to be able to help - and many will diagnose incurable OA when they fail. That doesn't necessarily mean you can't be helped. Many tried and failed with me before I figured it out for myself.
But if you're willing to work at it yourself - or maybe even find the right person (which is very difficult) then it is quite possible that what you have is very curable.
31 likes, 607 replies
djgd susan67756
Posted
Firstly thanks a lot for sharing such great details of your research.It really has given me hope & a new perspective towards the situation.
My husband , 38 years was diagnosed of Knee Osteoarthritis 3-4 months ago and I have been doing a lot of reading to help him get better & manage pain.It is terrible to see him struggle to walk & sometimes can't even talk because of pain.
We have seen private consultant & Physio's and doing everything we should be to keep pain at bay but its not helping.
I have ordered Trigger Point book and awaiting delivery.In the meantime I had a brief read at Postural Restoration,Osteopedia link & Neurokinetic Theraphy.Need your advice with the following:
1.The Osteopedia Link talks a lot about HIP.Are the treatments referred there suitable for Knee or any other forms of arthritis condidtion as well.Please advice.
2.I was looking at the Postural Restoration website to find practitioners & it appears that they only have providers in USA.We are based out of UK.Would you have any links to practitioners I can reach out to in UK?
Looking forward to hearing from you.
Thanks,
Dee
susan67756 djgd
Posted
I'm not sure what you're talking about re the osteopedia link - is that a link I provided?
I'm in the UK too and I know there are PRI providers over here as I enquired. There's one in Glasgow (which isn't too far from me), and I think quite a few in London. If you contact them via their site they will give you a list of people that are close to where you live.
The same with NKT - there are people over here that are qualified. More down South as I think the courses are typically held in London.
I haven't consulted either type of practitioner. I've been through so many that I'm a bit wary. BUT that said, when you're first starting out on this journey you know nothing and you do need some input to give you a bit of a kick-start. Either of these would be a prefered choice for me.....perhaps with NKT winning out. But also quality will vary - I think anyone can take these courses so try and find someone that's not only done the course, but has a strong background in physiotherapy or similar.
I think the best advice I can give you when consulting a professional over this is to know that NO ONE has the answers. There hasn't been enough research done for anyone to talk in absolutes. Don't be taken in by the "keep paying me x pounds a week for several months and you'll be cured". Likewise, take the "it's OA - nothing can be done" with a pinch of salt.
Ultimately you will need to learn to resolve this yourself. Use the experts to give yourself a crash course, but be aware that usually you get most of what you're ever going to get from them in the first consultation.
There will of course be acceptions to this rule, but keep it at the forefront of your mind and spend wisely!
NKT is where I'd look first. Get onto their facebook page and look through all of the historical posts. Quite a few relating to knee pain that might give you some clues. Also remember "DON'T CHASE THE PAIN". A golden rule that always seems to hold true is that the problem isn't where the pain is. The knee hurts because something somewhere else isn't doing it's job properly. For example, with knees it's very often down to inactive glutes.
Good luck!
francine81171 susan67756
Posted
for total hip replacement, and I can't even remember how I happened upon this discussion, as I wasn't searching anything OA related! I read the entire discussion and can't help but feel bamboozled! I'm going to try and make this as brief as possible and would greatly appreciate any feedback at all.
I started feeling pain in my groin about three years ago. In the beginning, it kinda'
felt like how your fingers feel if you need to crack your knucles. Once you crack
your knuckles, the "stuck" feeling goes away. Sooooo not the case with my groin! I
couldn't crack it if I tried because I couldn't get my leg to go in the direction I
wanted it to anyway. The pain came out of nowhere. I am not really into sports,
other than watching baseball and football on tv and there was no recent injury to
blame it on, although I thought maybe I pulled something. This groin pain lasted
like three weeks, hurting mostly when walking. As that subsided, I started getting
a sharp pain in my butt cheek.....smack-dab in the middle of my ass! My husband
would massage it, but the relief would be very temporary. This also would come
and go, so I never bothered to ask my doctor about it. My husband picked me up
from work, on his motorcycle, every day and we would go everywhere on that
bike. I remember hitting a huge pot-hole one day, that sent a wicked pain from my
tailbone up. It hurt for maybe 2-3 days and went away, but I started thinking that
maybe this was where it all started. I had an exray on my back that showed
nothing.
Over the course of the next year and a half, these two different pains would come
and go. I have been a secretary in the same office for 19 years and obviously I
spend a lot of time sitting, even though I I make it a point to get up and move
around
francine81171 susan67756
Posted
for total hip replacement, and I can't even remember how I happened upon this discussion, as I wasn't searching anything OA related! I read the entire discussion and can't help but feel bamboozled! I'm going to try and make this as brief as possible and would greatly appreciate any feedback at all.
I started feeling pain in my groin about three years ago. In the beginning, it kinda'
felt like how your fingers feel if you need to crack your knucles. Once you crack
your knuckles, the "stuck" feeling goes away. Sooooo not the case with my groin! I
couldn't crack it if I tried because I couldn't get my leg to go in the direction I
wanted it to anyway. The pain came out of nowhere. I am not really into sports,
other than watching baseball and football on tv and there was no recent injury to
blame it on, although I thought maybe I pulled something. This groin pain lasted
like three weeks, hurting mostly when walking. As that subsided, I started getting
a sharp pain in my butt cheek.....smack-dab in the middle of my ass! My husband
would massage it, but the relief would be very temporary. This also would come
and go, so I never bothered to ask my doctor about it. My husband picked me up
from work, on his motorcycle, every day and we would go everywhere on that
bike. I remember hitting a huge pot-hole one day, that sent a wicked pain from my
tailbone up. It hurt for maybe 2-3 days and went away, but I started thinking that
maybe this was where it all started. I had an exray on my back that showed
nothing. It became more uncomfortable to be on the back of the bike. Sitting, with my thighs around his hips, became a problem because after like 20 minutes, I'd
get that feeling like before, as if my groin was "stuck".
Over the course of the next year and a half, these two different pains would come
and go. I have been a secretary in the same office for 19 years and obviously I
spend a lot of time sitting, even though I make it a point to get up and move
around. After a year and a half (I know, I know, I waited too long) I spoke to my
doctor about what was going on. He sent me to an orthopedist to be examined.
The doctor took an exray and told me that both hips had OA, but the right side was
much worse. He went on to say that I was too young to go for the replacement, as
the replacement would last appromimately 20 years, requiring an adjustment or a
replacement again. He recommended that I go for physical therapy to try and stop
or at least slow down the deterioration. I did this about six times but it was making everything worse. My whole right leg started getting numb when I was sleeping and I'd have to get out of bed for a few minutes. The pain in the butt started radiating
down my leg, pretty much to my ankle. I started looking on line for possible causes and the one thing that stood out, due to having like 9 of the 10 symptoms, was
Periformis Syndrome. It's a nerve that runs along the sciatic nerve, as you probably
know a lot more about that I do. I had minor pain in my lower back, the butt pain,
the groin and the numbness. I mentioned it to my doctors and he sent me to an orthapedic surgeon. This was about 3 months ago. He also took exrays and when he came back into the room, he very quickly said "you need a hip replacement". He
explained the exray to me and showed me the joint and how it had no cartilage
left at all. He pointed out cists, explaining that they're actually holes in the bone,
causing spurs. The left hip is also in bad shape, but has a very small amount of
cartilage left. I told him about the pain I was having and that I can'tbend my right
leg to tie my sneakers. I actually have to keep my leg straight in order to tie them,
which is probably bad for my back. I can't stay in any position too long, the pillow between my legs doesn't help, and sitting at work makes it hard to get moving againHe said he couldn't believe that I was even able to walk up and down stairs at this
point. He strongly recommended surgery, saying that waiting until I was what
doctors called "the right time", would mean not living to the fullest for the next 20
years, as I'm only 41. I jumped right on to his offer, thinking that if it means
stopping the pain, he could cut the whole leg off for all I care!
Now I read this and I'm freaking out!!!! I have surgery on Tuesday and I might not
even need it?
Please share your thoughts/knowledge on this. I'd really appreciate it.
susan67756 francine81171
Posted
1. The degenerative changes that showed up on my x-rays (they were done when I was about your age) were mild. In that respect your case is very different from mine.
2. Your symptoms sound very similar to mine. **Suggesting** that your pain is coming from similar sources. My pain moved about from glutes to groin, numb restless legs - needing to tie laces with straight leg! In the past couple of years I certainly had what seemed very like piriformis syndrome - the numbness is a big clue towards nerve involvement. None of my symptoms were due to the degenerative changes in my hip - contrary to what all the specialists insisted. The liklihood is that the degenerative changes in my hip were the result of the muscle imbalance that was the real cause of my symptoms. I have no idea what's happened to my actual hip joint over the past 10 years but it certainly doesn't give me any problems nowadays.
3. Mine turned out to be a variety of pain/imobility issues all stemming from the fact that there was a twist/tilt in my pelvis (sacral torsion). Once I leveled that out the symptoms disappeared. Check this for yourself - do you have a twist in your pelvis? Lie on your back, knees bent and feet flat on the floor, arms stretched out to the side. Turn your head to one side and let your knees drop to the other side. Test this on both sides - is one side significantly more restricted than the other? This suggests sacral torsion which would explain your symptoms. However, I have to concede that it's possible that an arthritic hip joint could cause the sacral torsion so it's not solid proof either way.My feeling though is I'd want to try correcting the sacral torsion before opting for surgery.
4. It is known that there is no correlation between degenerative changes in joints (as shown on x-ray) and symptoms. It's not known for certain why this is the case, but it certainly tells us that it's possible to have joints that are in a very bad way and still lead a full, active, pain-free life. I don't believe it's possible for any surgeon (that's fully informed) to conclude from an x-ray that you need surgery to resolve your symptoms. There will be people out there with similar xrays to yours and no symptoms - they know this to be the case. The only way to know for sure the symptoms are caused by the joint is to rule out all possibility of other causes. Sadly this is very difficult to do as imbalances/soft tissue problems are poorly understood.
I really can't advise you. I can't say you don't need this opperation - it's quite possible that you do. It's a fact that some people find this operation changes their lives for the better - gives them their lives back! For others it's less succesful. I personally would want to rule out the possibility of the symptoms being caused by soft-tissue problems / muscle imbalances before undergoing surgery. But in your situation that's very difficult as you don't have time. There obviously isn't a quick fix for you because you tried the physio route and got nowhere. Because this twisted pelvis thing seems to be such a common theme with people with symptoms like ours then all I can suggest is seeing if you can find a GOOD chiropractor at short notice and get his opinion on whether this is a likely cause of your problems. In my experience chiros don't have a high success rate with fixing these things (it's not an easy fix) but they are the best people to diagnose them. Always you come back to the problem of who to trust. I don't think anyone has a really good understanding of this type of issue. Surgeons won't have much of a clue about soft tissue / movement impairment type problems though so don't rely on them to suggest anything but surgery!
There are no easy answers. It took me nearly 10 years to figure it out and I honestly didn't get reliable information from any expert.
It's a horrible situation to be in and I certainly don't want to put you off what could be the perfect solution for you or cause you unnecessary worry. Many peoples lives are transformed by surgery. I'm sure there are lots of people on these forums that could counter what I say with tremendous success stories relating to hip replacement.
You tried physio - it made you worse. So probably (As with me) there's not going to be an easy fix. Do you have the inclination to really research and persue this - try and fix what is (assuming it is muscle imbalacne) and increadibly difficult thing to fix?
Surgery does have a good success rate I think. When pain and other symptoms get bad then maybe that is the best way forward.
francine81171 susan67756
Posted
Anyway, I need to stop babbling. I think it's too late to cancel this surgery (actually later today) and I'm so tired of the constant pain and the different places it pops up. So, I'll suck ot up
francine81171 susan67756
Posted
Wish me luck! I'll update you after surgery.
Francine
susan67756 francine81171
Posted
francine81171
Posted
Ok, sooooooo, I had surgery last Tuesday and just wanted to update you.
Everything went well (so far). I was out of bed and in physical therapy twice, the next day. Trust me, I'm not tootin' my own horn. I know I'm younger than the usual hip replacement patient and it takes older people longer to heal. I've had 4 other surgeries, so I'm aware that getting yourself moving right away is key in the healing process. And I didn't feel that bad, to be honest. I think I'm in more pain now than the day after....lolol.
My biggest problem was being on my back....uugghhh....I HATE it! So I flipped out a little, by day three. They had this torture tool, I think it's called an abductor or something. It goes between your legs, when you're in bed, to keep them apart and straight. Then it's strapped to each leg on both sides. So you literally cannot move! I swear, they could have used this to take down our enemies in Pakistan. It made me NUTS!
The incision didn't hurt at all (weird), but the front of my thigh felt like someone went at it with an aluminum bat! But I can see why, based on the video I watched, where they're throwing your leg all around, hammering, drilling, cutting, etc.
I'm having physical therapy at home for what I hope is a few weeks. Insurance denied all requests for in-patient rehabilitation, saying I was doing too good. What? I'm sure once they get the therapists report from yesterday, they'll cut off the visiting nurse service and therapy too. Don't really need help with anything in my house except getting in the shower. I have one of those old tubs, with the feet, so it's too high to just step in. But I'm ok with doing the "bird bath" thing in the bathroom sink for now and my husband washed my hair for me. Don't even ask how - it's a bit disturbing. ..lolololol.
Anyway, all is good and now I have another 5 weeks home to look into all the information you have provided, so I can maybe prevent this on my left hip, which is almost as bad as the right one was.
Drop a line if you like. I just wanted to keep you posted.
Francine
eileen64__UK francine81171
Posted
Glad its over and done with now.
I've never heard of the abductor being used in a hospital before
We've got a similar thing in gyms.
We were just left with a pillow between our legs and one on either side to stop us rolling over.
Love
Eileen {UK}
susan67756 francine81171
Posted
JesseJames susan67756
Posted
Jesse James
EZT JesseJames
Posted
susan67756 EZT
Posted
Emis_Moderator JesseJames
Posted
I have had to delete your posts with direct links to and reference to your site as this is basically advertising. If anyone wants to read your article they can ask for the link using the private message service.
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
Regards,
Alan
JesseJames susan67756
Posted