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Author Topic: new and scared - just told i've got arthritis in both knees  (Read 6013 times)

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Offline margieup

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After several years of pain on descending staiirs (and only when descending stairs) and after a few visits to the doc and some bouts of physio which didn't help. i went last week to a consultant who examined me and i underwent an MRI. this week i returmed and was devastated to be told that i have patellar femoral dysplasia which has caused arthritis. my consultant told me that i was light years from surgical intervention but i swear that my knees have gotten worse in the 4 days since the diagnosis. Can arthritis worsen that quickly? also, i've been trawling the net looking for some postive stuff about living with arthritis - can't find any although one site promised it and the advice was "don't shun the wheelchair". gulp! is there life after arthritis or is it just one long sea of misery, crippledom and pain?

Offline Snowy

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Re: new and scared - just told i've got arthritis in both knees
« Reply #1 on: June 25, 2010, 08:59:15 PM »
First of all, don't panic. It's horrible to get an arthritis diagnosis, but it definitely doesn't have to mean a long sea of pain and crippledom. Did they give you any idea of how bad the arthritis is? A lot will depend on that.

If it reassures you at all, I was diagnosed with arthritis in both knees about three years ago after ten years of gradually increasing knee pain. The arthritis was caused by a combination of a maltracking patella and a variety of traumatic injuries. I modified my range of activities  - I stopped doing the things that really aggravated the pain and that my OS warned me would speed up the degeneration, like running and kickboxing - but apart from that, I've remained extremely active. I ride my bike every day and go on long distance rides once a week, swim five times a week, and ski through the winter with a brace for support (that's one thing I wasn't prepared to give up!). My arthritis is fairly early stage, but I've researched the options and talked to my doctor and there are things I can try if it does take a turn for the worse, like Synvisc injections. Like your surgeon, mine told me I'm a long way from needing surgical intervention, at least for the arthritis (I also have a blown ACL which does need surgery, but that's another story.)

It's unlikely that your arthritis has degenerated significantly in four days; what happened to me and may have happened for you is that after the diagnosis I became far more aware and concerned about the pain. I also went through a spell of very bad knee pain last summer that made me really concerned, but after x-rays and tests it turned out that the arthritis wasn't significantly worse and the extra pain was caused by inflammation, which settled down with physiotherapy and NSAIDs.

Having said all that, of course every case is different and a lot will depend on how much your cartilage has degenerated. From your description of the pain and the surgeon's comments, it sounds as though you're probably in a fairly early stage - and as long as you look after your knees and make the right activity choices, there's no reason why you can't stay active. Talk to your doctor about what stage the arthritis is at, any activity modifications they'd recommend, and pain management if needed. I hope you'll find there's still plenty that you can do.
Mar 11: R Biceps femoris tear (skiing)
Jul 10: ACLr (hamstring autograft)
Mar 10: L ACL rupture (skiing)
Feb 06: L partial ACL tear (kickboxing)
Dec 03: R bone edema (motorbike)
Jan 01: R patellar chip (motorbike)
May 93: R ACL sprain (hockey)
Ongoing: bilateral PFS and OA

Offline margieup

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Re: new and scared - just told i've got arthritis in both knees
« Reply #2 on: June 25, 2010, 09:10:00 PM »
Gosh, thanks Snowy. i didn't think i'd see a reply so soon, if at all. you are a very positive person and i have taken much comfort from this.

not sure how bad imy arth. is as i didn't really ask a lot of questions but i am seeing another consultant in Aug as my NHS referral has just come through. so i'm preparing a long list!!

delighted to hear that you are still so active - long may it continue,

Offline Lottiefox

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Re: new and scared - just told i've got arthritis in both knees
« Reply #3 on: June 25, 2010, 09:11:16 PM »
Hi and welcome....

What a scary time. I to have early stage OA (osteoarthritis) mainly under my kneecaps (sounds like yours is the same area). I'm 41 - fit, active, fitness instructor and self employed health professional.....unfortunately years of malalignment in my lower body finally reared its head last year and MRI scans also indicated cartilage damage (which is what arthritis is) in both knees.

Firstly - there is life after diagnosis! It sounds like you have early stage changes and all the odds are that with proper care and attention your knees will look after you for years to come. Do you still only have pain on descending stairs? It is highly unlikely that things have got worse in the 4 days post diagnosis - what can happen is that your midn suddenly focuses on every little niggle and it gets amplified. Trawling the net is a massive psychological game (been there done that). Yes you find out some useful information but generally the net brings the horror stories. What age are you at the moment?

There is a lot you can do to take control of your future. Firstly, don't stop exercises for all the lower leg muscles. Stay active as well, but I'm afraid your days of impact activity like running or contact sports might be over. People do run with OA, but personally I aim to keep what cartilage I have left intact. Supplements can help, like glucosamine and chondroitin, along with a balanced diet that isn't high in acidic inflammatory products. Injection therapy is another option - steroid or lubrication, but talk to your doc about when and if you need this.

There are also surgical options - the patella can be helped along by surgeries that aim to unload the damaged areas, or to deepen the groove that it runs it. But, it depends on the level of damage and your own anatomy. Only a patella specialist can advise you on these and only after doing full X-rays as well as MRI scans. Sometimes a basic scope to wash out debris in the joint and tidy rough edges can help, but again, its up to your doc.

Don't be scared - many many people have some form of OA in a joint relatively early in life. It isn't a death sentence but it does need managing and some care given to those affected joints. And as for that site - don't shun the wheelchair - delete it and forget it. You've got an early diagnosis and are now perfectly placed to take care of those kneecaps!

Good luck

Lottie  :)

PS My knee twin Snowy beat me to it!!  ;D ;)

PPS - Like Snowy I too am active (not as active as she is, but thats not due to my OA!! I hit the gym 4-5 times a week, train relatively hard, work with weights and pads and boxing gloves, circuit train, spin, do some pilates and so on. I stopped all impact work too. I have to be careful - too much can flare up the knees but you learn your safe parameters and my too much is still a lot more than many people can manage without OA! Like Snowy, I have impending surgery - but on my foot, not on my creaky knees!
« Last Edit: June 25, 2010, 09:14:44 PM by Lottiefox »
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline margieup

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Re: new and scared - just told i've got arthritis in both knees
« Reply #4 on: June 25, 2010, 09:23:34 PM »
Lottie

this is v. good to hear. i am 47 so not a spring chick but not an old bolier quite just yet (i like to think).

it's good to hear that with care and attention i have a good chance of managing this thing to fit in with my life. i've never been too much of an exercise fiend but i like to walk a lot and do yoga, so i will be continuing with suitable exercises.

thanks for the positive input - it really has buoyed me up.   :)

best wishes
Margie

Offline Snowy

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Re: new and scared - just told i've got arthritis in both knees
« Reply #5 on: June 26, 2010, 12:39:07 AM »
From your description, I think you have every chance of managing it - and of continuing to do the things you enjoy. The profusion of information online is both a curse and a blessing. It enables us to fill in the blanks that the doctors sometimes leave and is a source of sites like this, which offer support and sympathy and a place to vent; but personal stories tend to be skewed toward the rough side (if all goes well, you tend to just get on with your life rather than sharing your story online) and a lot of information is geared toward managing conditions as they grow more severe. It's all good to know, but it can also be a quick route to despair and it doesn't always address the situation you find yourself in at a particular point in time.

I got my diagnosis at 30 years old, so it was a real shock for me and I did spend some time quite fearful that I'd lose the activities I love and be headed for a TKR in my 40s. I guess it's still not impossible (I'm 33 now, and not always as kind to my knees as I should be - the ruptured ACL is testament to that) but certainly it hasn't held me back so far. :) It would be worth seeing a physiotherapist, and getting some recommendations for exercises that will help your knee and won't aggravate the condition.

If you're feeling down, just keep Lottie's advice in mind - there is most definitely life after diagnosis - and a fit, healthy, active life, at that. :)
Mar 11: R Biceps femoris tear (skiing)
Jul 10: ACLr (hamstring autograft)
Mar 10: L ACL rupture (skiing)
Feb 06: L partial ACL tear (kickboxing)
Dec 03: R bone edema (motorbike)
Jan 01: R patellar chip (motorbike)
May 93: R ACL sprain (hockey)
Ongoing: bilateral PFS and OA

Offline will1129

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Re: new and scared - just told i've got arthritis in both knees
« Reply #6 on: June 27, 2010, 12:08:19 AM »
There's a supplement called Serrapeptase that is supposed to be good for you joints, especially if you have arthritis. If you look at customer reviews online, some people swear by it.

I'm taking it now for scar tissue (is supposed to dissolve internal scar tissue over time) and to deal with my chondromalicia, so idk you might want to look into giving it a shot. I've been taking it for only two weeks so probably too soon to feel a difference.
Deeply regret having knee surgery...hoping it can be fixed.

Offline margieup

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Re: new and scared - just told i've got arthritis in both knees
« Reply #7 on: June 27, 2010, 08:43:28 AM »
Help - going into meltdown now. got letter from OS which describes my prob as a quite severe dysplasia. both kneecaps have cartilige damage; moderate on left and quite significant on right with fissuring and poss small patches of bare bone. he says that the pat-fem joint spaces are pretty well preserved however and there are no 'apparant' probs with the tib-fem articulations and that the rest of both knes are pretty much fine. he suggests i say fit and active, poss do PT if it worsens and/or a scope and as a last resort a partial KR. but he says 'hopefully' this is something i need not worry about for many years yet.

but it has already worsened. i woke up at 4am and there was a pain in my right knee although i was just lying there and my leg was straight(and it's still there really) the first pain i had in my knee (other than going downstairs) was on thurs whilst i was sitting on the tube going to work and by sunday, i've got it at rest - where does this end? does it ever end in fact? i am aware that i have prob not yet suffered as badly as any of you, Snowy, Lottie and Will (thanks for the response Will) but i am filled with fear that the next 30 years are just going to be all about pain and knees.

on a different note, i have been undergoing PT for carpal tunnel syndrome but now i think that is also arthritis and i'm riddled with it. i've got heberdens nodes on my fingers.

i feel a bit shaky and sick and i think that i am suffering a bit of delayed shock. did any of you feel like this?


Offline sleepylawyer

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Re: new and scared - just told i've got arthritis in both knees
« Reply #8 on: June 27, 2010, 10:35:18 AM »
hello

I am a similar age to youand if you look at my signature you can see I went from no knee probs to lots. Never been a sportsman so this seems very unfair!  Feel very sorry for you and yes when I looked at th latest video for the op I saw a chunk of bone fall off and I felt like OMG!  all quite natural - I am afraid we take our knees for granted. 

I can see the OS letter upset you but as Lottie said you have the info now.  I have to say that the pain if in the operated knee is probab ly due to the op the pumping up with saline and  the tubes they put in -  after two ops I know the recovery time is longer than the OS say.  Also if the pain is in the other leg this can be due to more weight put on that after the op - trying to say the pain you ahve now is pobably not due to the OA.  Also my OS said once you know about the problem you tend to have pain strange but true  it is in part psychological.

there are things you can do like pilates static biking walking WITH PROPER TRAINERS LIKE ASICS.  See how you go take a painkiller if you need it, and use the ice pack.    And i agree with Lottie throw away the wheelchair post  at the end of the day there are artificial knees which i have heard people say are marvellous for wen you are  a lot older.
Hope this helps from one not quite a spring chicken to another ;D


07/09 diagnosed with lateral discoid meniscus with large tear RK menisectomy
03/10 diagnosed with new meniscus tear RK.
05/10 partial menisectomy, lavage and debridement 2x2 cm square Grade 4 hole in medial femoral condyle articular cartilage RK
07/11 LK medial meniscal tear
08/11 APOS shoes fitted

Offline sleepylawyer

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Re: new and scared - just told i've got arthritis in both knees
« Reply #9 on: June 27, 2010, 10:41:07 AM »
Sorry :-[ just seen your post you ahve not had an op so ignore that bit but the bit about knowing smomething giving pain is still true.  hang in there medicine is advancing all the time.  Preservation is the key. 

Sleepylawyer :D
07/09 diagnosed with lateral discoid meniscus with large tear RK menisectomy
03/10 diagnosed with new meniscus tear RK.
05/10 partial menisectomy, lavage and debridement 2x2 cm square Grade 4 hole in medial femoral condyle articular cartilage RK
07/11 LK medial meniscal tear
08/11 APOS shoes fitted

Offline margieup

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Re: new and scared - just told i've got arthritis in both knees
« Reply #10 on: June 27, 2010, 03:02:44 PM »
thanks Sleepylawyer. i appreciate your words of support.

i am just trying to take this news on board and it's up and down.

saw a dis-abled space at the supermarket and thought OMG am I dis-abled?

scariest time of my life (so far!)

hope you get on good with your knee

Offline Snowy

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Re: new and scared - just told i've got arthritis in both knees
« Reply #11 on: June 28, 2010, 07:09:17 AM »
Hey Margie,

It sounds like you're going through arthritis diagnosis deja vu - first you had the shock of being told about the arthritis, and now you have the shock of getting the gory details and trying to digest exactly what that means.

First of all, take a deep breath and try to wrestle those panicky feelings under control. Your OS's letter definitely isn't all bad news. He notes himself that there are positive areas (no probs with the rest of the knees, articular cartilage on tib & femur okay) and that this should be something that you don't need to worry about for many years. You're also not participating in activities that are likely to make things worse.

You've also just become hyper-aware of the problems in your knees, and it's natural that they would be at the front of your mind right now. For me, I know that diagnosis and/or new knee problems tend to make me intensely aware of every twinge, crunch and unnatural feeling in my knee. It really is very unlikely that your knees have suddenly gotten significantly worse in a few days; you're probably just feeling very aware of the existing problems. I'd start by taking some conservative steps to address these - physio, NSAIDs - and seeing how it goes. Just the fact of taking action will likely make you feel better.

Even in a worst case scenario - which it doesn't sound like your OS thinks you're anywhere close to - there are plenty of options you can explore, and cartilage repair is evolving all the time. You may find that long before you need a PKR, there are other, better surgical options on the table.

There's always a period of shock after a diagnosis that has the potential to change your life substantially. As you adjust to the news, you'll be able to focus more on the place you're in and how to move forward rather than worrying about what the future may or may not hold.

Good luck, and remember we're here whenever you need to get fears or concerns off your chest. We've all been in that horrible post-diagnosis spot, and know how scary it is.
Mar 11: R Biceps femoris tear (skiing)
Jul 10: ACLr (hamstring autograft)
Mar 10: L ACL rupture (skiing)
Feb 06: L partial ACL tear (kickboxing)
Dec 03: R bone edema (motorbike)
Jan 01: R patellar chip (motorbike)
May 93: R ACL sprain (hockey)
Ongoing: bilateral PFS and OA

Offline margieup

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Re: new and scared - just told i've got arthritis in both knees
« Reply #12 on: June 28, 2010, 07:39:15 PM »
Snowy - i guess you're named after your fave substance as you like to ski so much but there is also a snowy owl  and you are wise indeed.

i have now seen my GP and she has reassured me that things cannot deteriorate quite so quickly and that i would not be considered dis-abled. just got to mind those knees now.

thank you, thank you for taking the time to write such reassuring replies. am sending good thoughts to your knees and keep well

Margie  :)


Offline sleepylawyer

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Re: new and scared - just told i've got arthritis in both knees
« Reply #13 on: June 28, 2010, 07:47:05 PM »
Hi Margie

glad to see you saw the GP and that has reassured you.  I think Snowy ir right after a diagnosis you think only about that body part in this case knees.

I have to say my diagnosis has pushed me to lose weight I am on Slimfast bori g but it works and I have not been so determin ed to shift the flab for ages ;D

sleepylawyer
07/09 diagnosed with lateral discoid meniscus with large tear RK menisectomy
03/10 diagnosed with new meniscus tear RK.
05/10 partial menisectomy, lavage and debridement 2x2 cm square Grade 4 hole in medial femoral condyle articular cartilage RK
07/11 LK medial meniscal tear
08/11 APOS shoes fitted

Offline WestPoint

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Re: new and scared - just told i've got arthritis in both knees
« Reply #14 on: June 28, 2010, 08:26:42 PM »
Margie,

Some of the other members have given you some excellent advice. However, you should also know that there are treatment options for you. Like Snowy said, cartilage repair is evolving all the time. If your defects are on the patella, you should ask Lottie about the possibility of Cartifill. If that's not an option, there is still www.regenexx.com and similar mesenchymal stem cell treatments. It's still in its early phases, but if you are in America, it's worth looking into.

I'll let some of the more experienced members give you some other suggestions.















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