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Author Topic: OA both knees, very confused  (Read 1352 times)

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Offline Freedom

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OA both knees, very confused
« on: March 10, 2007, 12:55:45 AM »
Hi, this is my first post here. I was recently diagnosed with osteo arthritis in both knees.  My primary doc had x rays taken, front and side, lying down.  She prescribed naproxen.  The left knee is worse than the right.  Naproxen helped right knee only.  So after a month, she switched me to Mobic, and sent me to see an orthopedic surgeon.

I saw him last week.  He took x rays from the rear, lying down and standing.  He did not like what he saw in the standing x ray.  He told me the Mobic was a waste of money, and go back onto the Naproxen. And he sent me for an MRI.  I had that today.  I go on Tuesday to see what he says about the MRI. 

Primary doc suggested I lose weight.  (I have lost 8 pounds so far.)  She said an ace knee sleeve and / or a cane would be a waste.  Ortho doc said to use heat in the morning, cold after I've been using my legs.  Said both cane and knee sleeve would help me walk a little longer before I have to sit.  He sent me home with a cane.  Wanted me to use 2, but I am SO not ready for all of this. 

I have pain lying in bed, legs straight, no weight and not moving.  Sitting and standing up hurt a LOT.  Walking hurts.  Stairs are impossible.  Primary told me to use the handicap ramp, find the elevator, or I don't go there.

I can't figure out when it is OK and when it is going to hurt.  It seems to change hourly.  One day I can get up and do things for an hour, other days I can barely get out of bed.  10 AM is sometimes a good time to go for the groceries and other times I can't even bend my  knees to get them in the car.  I tried checking the weather forecasts, there does not seem to be any rhyme or reason to my pain.    I can't see how I can commit to do anything, as I have no idea what my pain level will be, even in say, 3 hours! 

I have dropped out of everything I was involved with; many involved stairs, others involved that I be a certain place at a certain time, and I can't!  I was teaching religious ed at my church; but it is 2 flights up stairs to the class rooms.  (We are exempt from the handicap rules for the moment, so no elevator, no ramps, no other places we can hold the classes.)  I had been a lector at church for 5 years.  It means reading at Mass once every 6 weeks.  But how can I do that when some mornings I can't get up?  I can't be calling relief coverage an hour before hand!  So I had to drop out of that as well.
There are few other things, but I think you get the idea.

Thank goodness I bought a ranch house 4 years ago, it is all one floor.  I have trouble getting around the house.  My 80 year old Dad lives with me, he has been doing my laundry for the past 5 months, as the washer and dryer are down cellar.  I can't get down there!  And if I did, however would I get up again?

I keep waiting for the docs to tell me something that will help with the pain, or help me know what I can and cannot do.  But so far they don't address this, even when I ask.

I am at a loss what to do.  At the moment, I am not working, taking care of my Dad.  That has become comic in the past 5 months, he is doing more and I am doing less!  I have no idea how I would be getting to a job if I had been working when all this started.  The pain became unbareable in October, 2006.  I am 48 and trying to figure out what happened.   don't know where to turn next.  Anyone with ideas, suggestions, specific questions I should be asking the medical folks, please advise!  thank you for taking the time to read this.

Offline DeborahinNC

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Re: OA both knees, very confused
« Reply #1 on: March 10, 2007, 05:27:11 PM »
Hi Feedom,

I'm very sorry you are having so much pain and trouble.  I have OA in both knees grade IV right and grade III left.  My right knee is the worst but thankfully I am not at the point you seem to find yourself at.  I have a lot of trouble with doctors who will not treat pain.  There are several reasons none of which are good, mostly they have to do with either lack of education on pain management or fear of prescribing pain meds because of addiction.  My sister-in-law holds a master's in pain mgt and is a pharmacist.  When people are educated they know that if you take pain meds to manage pain you do not become easily addicted.  I say easily because there is always that possibility. 

I have two suggestions.  First either yell very loudly at either your OS or GP to get you some better pain management.  Don't be afraid to ask for what you need or want.  Its as hard from our standpoint because I know for me I don't want them to think I'm drug seeking - I'm not I just don't want to be in pain.  The other option is to ask either your GP or OS to refer you to a pain clinic.  These are specalized practictioners that are used to pain and what it not only does to us mentally but physically.  It is exhausting to always hurt and you need this energy to be able to function in life.  If you are in the US there are probably many options for pain clinics.

Please don't give up.  You may just need to put your foot down (ok sorry bad analogy) and tell that what you want and need.  Naproxin may be fine but if its not managing your pain then they need to move to something else.  Mobic is not a pain reliever its an anti inflammatory and may help relieve the pain by reducing the inflammation and that would be great if that is all you need.

I hope the MRI gives you some further insight but please be aware that they do not always show injury.  In fact before I had this last surgery we didn't even bother with an MRI, we did x-rays in the office but since he was going scope the knee and MRIs, especially once you've had surgical procedures don't always give a clear pictue we skipped it.  I had to laugh when he asked if I wanted one.  I told him I can't read them so it really was a matter of - did he want one.  Saved my insurance company a little there (and I got no thank-you card for that...lol). 

Please post and let me know how you are doing.  And, feel free to post and vent your frustrations.  This is a great site to get support.

I'll look forward to hearing what you found out on Tuesday.

Be well and take care.

Deborah

Offline Bill58

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Re: OA both knees, very confused
« Reply #2 on: March 11, 2007, 01:57:36 PM »
Deborah,
This is my first post on Kneegeeks so please bear with me if I screw up!
Anyway, your history is somewhat similar to mine.  However I think I can offer a possible solution.
I suffered from bilateral knee pain 18 years ago, cause unknown, stairs hurt a lot, etc.  Took massive doses of anti-inflamatories , switched careers (got out of daily construction), and the prob slowly got better.  found a great chiropractor after 7 years who would pull on my leg (my foot between his knees, and pop the knee back into place (toes pointing to the outside). this, and wearing shoes where the heels were not worn (VERY IMPT) STOPPED THE PAIN COMPLETELY.  Then, another 9 years later, it all returns, and the chiro and the antiinflamatories helped little.
Since this was unknown origin and bilaterial, I always suspected that it was something systemic.  Rheumatoid arthritis, Lymes, etc.  I began to see specialists (which my Blue Cross doesn't cover, of course) and they determined that I am fighting an old case of Lymes disease, apparently from a tick bite I never knew I had 20 years ago!  I have been on antibiotics now for a month and the knees definitely feel better.  No more pain at night.  Things like walking roofs hurt, but normal walking , even laders I can do again. A month ago I was only able to move with a cane and a grimace!  Note that the normal tests given for Rheumatoid and for Lymes and other auto-immune diseases show a lot of false positives and false negatives and your typical GP is pretty much useless in analyzing the results.  If you have Lymes but don't want to do Antibiotics, there are herbal treatments that will work for older cases.  If it is fresh, do the ABx!  Good luck.   :)

knee deep in Goo

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Re: OA both knees, very confused
« Reply #3 on: March 11, 2007, 04:24:02 PM »
Hi

Has your OS taken a standing xray of your knees to see what type of joint space you have?  OA shows up visually on Xrays and a pretty distructive disease with no cure.

You can always ask to try the injection route.  Cortizone  combined with a  Synvisc  or Orthovisc type product.

Or at the very least ask for lidoderm patches to numb your knees. (pretty expensive but wonderful)

Mobic works pretty good if your knee is swollen- for me it takes down the puffy and easier on the stomach. 

Crutches work pretty well when your in a pinch to get around and about in the world if your very unsure of what distance you can handle on a day to day basis.


Ice the knees at night and it should help with the pain if they feel like they are vibrating and your wanting to chop your legs off.





Offline Susky

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Re: OA both knees, very confused
« Reply #4 on: March 11, 2007, 05:52:12 PM »
Hello Freedom and everyone else,

I am 46 and also have OA in both knees - I have to say not as bad as you have.  I am still mobile, working days are best because I have a sit down job, but the weekends are harder because I tend to be on my feet more and really flag by the end of the day.  I have not been able to sleep with my legs completely flat for quite a while now, I keep a small pillow at the foot of my bed and tuck it under my knees if lying on my back and when I sleep face down I push it down to my ankles and rest my feet on it giving a slight bend to my knees.   I totally get your comment about not being ready to use 2 canes (or even 1). 

I can see that stairs are going to be a big problem in the future for me (we bought a townhouse on four levels just before I was diagnosed with OA !!!!!).  Almost 2 years later I can still handle then, but it does get difficult.

I am managing without pain relief, but my OK episodes are getting shorter and where before I got total relief immediately on sitting down, now when I sit down I often still have a throbbing in my knees.

It is good that you are managing to lose some weight.  Last year I lost about 6 kilos (approx. 12 pounds) and felt a lot better for it, unfortunately I got lazy about my eating habits and have now put it all back on .... surprise surprise my knees are giving me more trouble !    I have absolutely no doubt that if I lost all my excess weight my knees would be much more comfortable - so starting tomorrow (Monday) I am back to WEIGHT LOSS MODE - please wish me luck !!   :)

It is really sweet that your Dad is helping you around the house, in a round-about way it probably makes him feel useful being able to give you a hand.  Hugs to you both and good luck with finding some solutions, I will look forward to reading more from you.

Sue x

Offline Freedom

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Re: OA both knees, very confused
« Reply #5 on: March 13, 2007, 11:01:20 PM »
Thank you all for you rkind words.

I saw the orthopedic man this afternoon, got a look at the MRI's, and learned what those show.

Deborah, I am sorry to say I FORGOT to ask him about grades!!!!

Knee deep:  yes, at last week's visit he - the OS -  took x rays of both knees, from the back, with me standing.

I don't really KNOW a lot more than I learned over a month ago from my primary doctor.  But I UNDERSTAND it all MUCH better now.  My primary does not get any x rays, just goes buy the lab report. 

The OS showed me everything, and explained what we were looking at and what a "normal" would look like.  I have lots of arthritis on the left knee, especially behind the knee cap.  There is a lot of fluid build up, aka water on the the knee.  This is why I feel like I have a water ballon around my knee!  He said as I use the knee more, that fluid builds up and then compresses and that gives more pain.  On the standing x ray, THERE IS NO GAP between the bones on the left.  Still, he says this is "Moderate!"

On the right knee, there is the same situation, just less of it, in terms of the arthritis, and fluid.  There is a small gap between the 2 bones in the center.  They meet on the sides.  And I have a tear in the meniscus on the right knee.  He said surgery would just cut off the torn piece.  That cartilage does NOT heal, so this is permanent.  This knee is "mild."

For now, he suggested that I stay on the Naxopren.  Add 2 Tums per day to increase my calcium intake.  Continue taking the glucosamine and the chondroitin.  He said that the AMA officially says it does not work.  But he says there is a $45 million study which shows it does improve things, and he advises people to take it.  Continue using the cane when necessary, applying heat in the morning and ice after any extended usage. 

I had a VERY good day today, and so he saw me at the other extreme ( at my visit last week, I was barely able to hobble.)  HE says this is ALL due to the barometer.  when it is dropping, the pain will increase.  When it is steady or rising, I will have a better time.  I told him it seems to change hourly.  He told me that is the time of year, we have minor rain storms passing through all the time in the Spring.  Sigh.  He never once mentioned my weight ( I am still losing and I intend to keep going on this.)  I LIKE this doc!

He discussed the injections, both the cortisone and the hyalauric.  He doesn't think I need to start those yet.

He wanted me to come back in a month to make sure that everything is going OK. I really didn't see the need for that, I know where to find him when things start getting worse! So I told the receptionist I will call to make the next appt.

So that is how things stand.  Maybe I am starting to come to terms with all this; maybe I am having a great day and forgot how awful I felt the night I first posted here.  Maybe the Naproxen and the glucosamine have helped.  ( I started the glucosamine almost 2 months ago.)

Offline DeborahinNC

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Re: OA both knees, very confused
« Reply #6 on: March 14, 2007, 12:56:19 AM »
Hi,

So glad you are better today.  My OS asked me a couple visits ago if the weather bothered me.  I said before I started with the surgery no but now I have to admit it does make a difference.  Glucosamine and chondroitin is an interesting issue.  There are very vocal people on both sides of the issue.  If fact if you look at another area here there is a link to stream information on a large study which does not bode well for this.  The one good thing about taking it is that it causes no harm.  I currently take it but have gotten no relief so will probably not continue once these are gone.  Did your OS suggest any PT or give you any idea of exercises you can do without irritating the knees but keeping the muscles strong?  This may not be a good option for you - just wondering.  It does sound like he spent good time with you which is great.

Just be nice to your knees and don't be stubborn.  If you need to see your OS again make an appointment.

I wish you continued improvement and painfree days.

Keep in touch and be well

Deborah

Offline mirjanna

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Re: OA both knees, very confused
« Reply #7 on: April 25, 2017, 07:53:43 PM »
Hi,

I am aware that you have not been on the forum in a very long while, but I have a similar problem as you and am on a similar geographical location, so I was wondering if for all these years, you have found the solution to your problem.

If you receive notification of my message, kindly take a minute to let me know, I will be grateful.

All best,
Mirjana