The WAITING ROOM => Emotional/Spiritual help and encouragement => Topic started by: ntrgrl on September 30, 2004, 07:05:57 AM

Title: Bad, bad pain night!! Help!
Post by: ntrgrl on September 30, 2004, 07:05:57 AM
Okay...this sucks!  :o

I had my monthly dr. visit Tuesday. I broke some more scar tissue Monday and managed to get to 118 degrees when I did my wall slides. NOW, I've had a delay in getting the PT prescript rewritten and authorization going through (of course after saying she'd be there my claim adjuster nurse case manager didn't show up for the dr. appt and thus no verbal autho of the PT...).        :-/   One step forward, two steps back     :-/

Now my knee and entire leg is hurting a lot  :o tonight.  
I have taken two darvocets and using the tends unit on the  "acute pain" setting AND drinking a wine cooler.
NOTHING IS WORKING !!!!!!      :o   >:(   :-/

Any thoughts.... advice.... well thoughts and hugs work too. I am getting really sick of this pain. Sleep may be optional tonight.    :'(   :-/    :o
Title: Re: Bad, bad pain night!! Help!
Post by: Heather M. on September 30, 2004, 11:08:19 AM
I'm so sorry you're going through this.

Speaking as someone who has had severe problems with scar tissue, I can tell you that pushing the knee hard enough that you are tearing adhesions is not necessarily a good thing.  And if you push this aggressively on a regular basis, you can get rebound pain, swelling, and even prolong/re-start the whole inflammatory process which marks the acute phase of knee injury or post-op.  And in my case it meant that I actually laid down more and more scar tissue.  Honestly, the harder I tried to bend the leg, the more painful it got.  The pain got so bad, and the irritation and swelling so great, that I actually managed to shut down my quad muscles.  It got to the point that I lost the ability to do a straight leg raise.

My knee just started going downhill shortly after that, and then at about 14 weeks post-op the swelling and heat in my knee got so bad my OS was worried about infection--the knee was literally red hot.  I was put on 2 courses of Prednisone dose packs, and they only worked temporarily.  Nothing could keep the heat and pain and swelling at bay. Now I know it was because I was rehabbing a knee full of scar tissue too aggressively.  Hindsight is 20-20 and all that....

So anyway, the valuable lessons I learned were that if my knee flares with pain, heat, and swelling in the day or two following PT or a new activity, it is likely that it knee isn't up to what I am asking it to do.  I wanted to just grit my teeth and push through the pain and MAKE the knee respond the way I wanted it to.  I kept repeating "no pain, no gain" to myself.  It was absolutely the wrong thing for me to do, as it actually made my problem worse.

Now I'm not saying you have arthrofibrosis or anything like that (though you should be checked out by a surgeon familiar with the condition).  But it seems like your body is trying to tell you to go a bit easier on the rehab.  You know when something is wrong in the kneek.

Title: Re: Bad, bad pain night!! Help!
Post by: Heather M. on September 30, 2004, 11:08:40 AM

So it might be a good idea to see if you can go back to the basics.  You don't even need to be in a PT clinic to do most of the basic rehab exercises.  Start with the very first tasks you were given post-op, and do those 4-6 times a day.  Wall slides are usually part of this--but don't push the flexion to the point where it is killing you.  Try instead to go to the point where you *start* to feel discomfort. Then back it off a bit and hold the stretch for 60 seconds--longer, if possible.  I found that holding gentler stretches for a longer time was more effective than cranking to the point of grinding my teeth, but only being able to hold it for 10-20 seconds because it was so painful.

Aside from wall slides (lying on the floor or on your bed), other basics are quad sets, ankle pumps, hamstring stretches, and seated straight leg raises (try just lifting straight up, then add other directions if this is okay after a few days).  Finally, patellar mobilizations are critical, along with mobilizing the patellar and quad tendons.  Also, you can gently massage your ports if they are healed up.  On my worst pain days in PT, I would go in and do patellar mobilizations  and wall slides only, as well as 2-5 minutes of very gentle spinning on a recumbent bike with no resistence.  Then ice and stim.  As the knee started feeling better or bouncing back from its bad days, we would start adding other exercises back one at a time.  If I got swelling, sharp pain, irritation, or throbbing in the knee, I would drop the newest addition and go back to the basics again.

And while you're having those bad patches, try lying on the couch with ankle above knee and knee above heart, e-stim pads on, and ice with compression (ACE wrap or bandage).  Then get some good music--stuff you really like, and put headphones on to zone to the tunes.  This really helps me--I even do visualization exercises when the pain is off the map, and they do help.

Hang in there, and try not pushing the knee so aggressively.  Just listen to what your body is telling you, because right now it's saying something is wrong with the activities the knee is being made to do.

I can't remember when your surgery was, but I recall turning a corner in terms of pain reduction at about 5-6 weeks.  It was a real relief--part of it had to do with going on Celebrex.  Unfortunately, at three months post op I stopped improving and plateaued for a while, then started backsliding quickly.  That's because the scar tissue that had been in my knee all along was starting to get really thick and tough.  It was putting traction on parts of the knee--pulling my kneecap low and out of place, for example--and it had entrapped structures like the IT band and patellar tendon in sheets of scar tissue.  The pain and knee in general just kept getting worse and worse.  Finally, at 5 months post-op, my OS did an exploratory scope to figure out what was going ong

So keep an eye on your situation.  There are definitely ups and downs--during the down times, go easy on your knee and see if it can heal itself.  


PS Try not waiting to take the pain meds until the knee is screaming--once it gets to that point, it takes a lot higher dosage to calm things down again.  I find if I take 1/2 of a dose before things get really bad, I will get a lot of relief from that small dose.  More than if I wait until the knee is absolutely throbbing, then try to take a full dose or even double that.  It really does make a difference.  Also, the Celebrex is key for me--it cuts my pain almost in half.
Title: Re: Bad, bad pain night!! Help!
Post by: BuffettBarbie on October 01, 2004, 06:14:14 PM
I couldn't agree with Heather more!  The key is to get the pain under control so you can continue to break scar tissue.  Even if you don't hurt, take your pain meds so it builds up in your system.  Good luck and many hugs!

Chris :)
Title: Re: Bad, bad pain night!! Help!
Post by: Holly on October 01, 2004, 08:26:57 PM
Dear Jax:

I'm all over it...I agree that you need to keep your pain under control!  However, just a little noodge from a "Jewish Mother"...PLEASE DON'T MIX PAIN MEDS WITH ALCOHOL.  O.K., sorry I'm such a worry wart, but I wouldn't want anything to happen to you, sweetie!  

The other thing is I would seriously take Heather's advice into consideration concerning scar tissue management...I swear her advice saved me MONTHS of needless pain and teeth-gritting stubbornness which was NEVER going to improve my ROM.  I had scar tissue...that's the long and short of it...and my surgeon consulted an arthrofibrosis expert before going in to do a lysis of adhesions combined with a VERY MILD MUA (he barely bent the knee at all - he really didn't need to after removing the scar tissue!!)  Before reading Heather's posts I had been forcing myself way beyond endurable pain because I was determined to get better ROM.  I got so bad that I was VOMITING during passive ROM but wouldn't let the PT stop pushing me!  After my MUA/lysis I was able to get reasonably comfortably to 120 and have been able to maintain it and go further since then!  Just suggesting you consider may not have a scar tissue issue (hey...that rhyms!), but if you do then NOTHING you do will SAFELY get you beyond where you are.

So sorry you're suffering so much...pain's such a bear, right?  I'm sending you lots of warm, gentle hugs and wishing you'll be feeling better very soon!

Title: Re: Bad, bad pain night!! Help!
Post by: ntrgrl on October 03, 2004, 07:50:29 AM
Hi Everyone  :D

Pain level has gone down then up then down then off the chart  :'(   :o  and well, a jacuzzi bath, new Rascal Flatts CD and a pain pill w/my version of a CPR (cherry pepsi + malibu rum) and I was good to rest last night.

I'm finding the more I just walk around seems to agitate the heating up of the knee and leg. Today we did some walking here and there. In and out of the Jeep and around annd and well, I'm a bit tuckered out  :-/ :-/

I start back at PT on Monday... they finally got around to getting the authorization. ... so....

Thanx's for all the hugs and thoughts. It's nice to know ya' all out there.

Hugs to all for a pain free weekend.

:-* Ntrgrl

PS: I plan to tone it down a bit w/pt and just do it until it hurts and back off. No pushing it ....
Title: Re: Bad, bad pain night!! Help!
Post by: chris-oregon on October 03, 2004, 08:52:10 AM
 I am not sure about anyone else, but I think that walking too much is one of the worst thing that you can do  (outside of really bad PT). I know that when I get really bad and the pills won't cut the pain, I sweet talk my husband into gently massaging it, put on some "Blue " stuff, and ice and elevate. Together with the pills I can usually cut the pain.  Maybe some of this might work for you...
I completely agree that it is better to stay ahead of the pain with pills. Oh... and are you on anti-inflamitory meds. If not it may really help!!
Good thoughts for a relaxing weekend!!
Take Care
Chris 8)
Title: Re: Bad, bad pain night!! Help!
Post by: Heather M. on October 03, 2004, 09:13:54 AM
I don't mean to "mom" you, but...You really need to stop mixing alcohol with your pain medication, especially if you are taking anything with tylenol (acetaminophen) or Celebrex/Mobic/Bextra or any of the other Cox2 inhibitors.  The meds you are taking stress your liver, and alcohol can double that effect.  To say NOTHING of the potential negative side-effects of the pain meds being doubled or worsened by the alcohol--the sedating effect, dizziness, drowsiness, heart racing, BP changes, sweating, etc.  

If the pain meds alone are not getting it done, you need different ones or a stronger dose of what you are currently taking.  I'm not saying at ALL that you should suffer--no one should.  The fact that you have heat and swelling in the knee usually means the patient is in serious pain.  Those two things are red flags--especially in someone who has ROM problems--for scar tissue or an ongoing inflammatory response.  Also, the fact that you had an infection and hematoma means that you are kind of at an elevated risk for scar tissue problems.  

If that is the case, then instead of cranking on the knee in PT or pushing it by being on your feet all day, then medicating yourself with pain meds mixed with alcohol, you really need to see a MEDCIAL solution to your issues.  I feel so bad, because I've been in a similar situation--I had a terrible infection after my second scope, and three weeks later had to have an arthroscopic lavage (washout of the bad gunk).  When I woke up from that scope, I was on a gurney in post-op.  The nurse had a CPM running from 0-30 degrees, and I couldn't take the pain. It was unbelievable.  And over the next three days I was kept in the hospital for IV antibiotics and pain management (toradol injections--yay!).  When I got out of the hospital and went straight to formal PT, my ROM was +20 to 56 degrees--meaning that my knee was only moving between 20 and 56 degrees; I couldn't get anywhere close to either bent or strait.  So I was sent to daily aggressive PT, and it was agony.  

That's when I got in my OS's face about pain management.  He was way under-medicating my pain--5mg of percocet every 4-6 hours.  And then he'd only give me 30 pills at a time, but tell me I didn't need to come back and see him for a month.  You do the math--even if I ONLY took four pills a day, I had seven days' worth of meds--tops.  Finally, I stopped being afraid he'd think I was drug-seeking, stopped being embarrassed and feeling like a total failure because I wasn't getting better in leaps and bounds.  I made a follow up appointment with my OS and brought a notepad with bullet points highlighting what was going on.  I took him through a day in my life, and mentioned how everything had to revolve around my pain.  I said I just stopped going out and having a social life at all, just sat at home with my Breg Polar Care cryocuff, eating lasagne because it could be warmed up easily.  I spent weeks just sitting in my recliner doing breathing exercises to control the pain!!

My OS kind of sat there with his mouth haning open, and I could see he was wondering why I was telling him about my social life--or lack thereof.  I said I just wanted to stress to him the impact on my life.  I told him that if my dog were in the amount of pain that I was every second of every day, the vet would recommend putting her to sleep to put her out of her misery!   That really seemed to wake him up a bit.  He stopped being so stingy with the pain meds, and arranged for me to see him once per week.  After five weeks of PT torture I was only at 85 degrees of flexion and still missing lots of extension.  My doctor finally recommended that we surgically address the scar tissue with a manipulation--MUA.  We did that, and it didn't really work.  Plus it was incredibly painful.  It felt like a monster had gnawed on my thigh.  Six weeks after the MUA I had a fourth scope.  

Title: Re: Bad, bad pain night!! Help!
Post by: Heather M. on October 03, 2004, 09:14:05 AM

Anyway, the reason I kept going back to the OS (and submitting to repeated procedures even when he admitted he didn't know why my body was having so much trouble) was because my pain was so far out of control that I just had to do SOMETHING to try to address it.  My logic and reason seemed to be suspended by my pain levels--what else could explain me going back repeatedly for 5 knee procedures in ten months???

So my point is that pain management is more than just a way to help make you more comfortable.  It also helps you control the situation enough that you can objectively assess the knee and see what's going on--what hurts the knee, what you can tolerate, etc.  And PM can keep you from making decisions that probably aren't logical or medically sound just because the pain is driving you crazy...

Take care of yourself, and definitely ease back on the PT.  When is your next appointment?  Can you move it up and discuss more effective pain meds?  It might help to keep a pain diary and objectively rate your pain at a level between 0 and 10, with 10 being the kind of pain that is so unbearable you'd be screaming in the back of an ambulance on the way to the ER.  Be rational and objective about the pain--don't say your pain level is a constant 10, because hyperbole like that will get you dismissed by the doctor.  I came up with a scale together with my PM doctor, including what my constant pain levels were, what the worst level was, what the best was, and most importantly what number on the scale I had to get to before I would reach for painkillers, and what level would be enough to totally distract me and keep me from working or socializing, etc.  He actually understood my point about socializing, and said it was an important part of getting better.

Hopefully you enjoyed your day out of the house--it is important to get out some, but remember to take plenty of rest stops.  And baths are GREAT for the body and spirit--just be sure to thoroughly ice the knee after getting out.  And be very careful--so many of us have fallen in the tub or on a slippery floor.  Heather G. tore her patellar tendon (or some tendon in the knee) in the tub or shower after surgery once!!  And not to belabor the point, but the combo of a hot bath, pain meds, and rum is a recipe for disaster.  Truly.

Keep us posted, and keep RICE going with that knee.

Title: Re: Bad, bad pain night!! Help!
Post by: ntrgrl on October 04, 2004, 06:48:04 AM
Okay Heather, okay... you've been heard loud and clear.
I KNOW it's bad to mix the alcohol + a napoxen but at the pain point  I was at... excuse. I know.   :-/

I have been over doing the getting back into things.
I have PT tomorrow at 4:20pm after working 8 hrs.
I will talk w/Chi about pain management. Promise.  :-/  

On an up side at least my husband isn't afraid of... well... you know... intimacy.  ::)   ;D     ;).  Even that I'm being extra careful.

Hope all had a good weekend and all have a good work week for those of us back to work.

Hugs  :-*  Ntrgrl

Title: Re: Bad, bad pain night!! Help!
Post by: Ron22 on October 04, 2004, 07:19:09 AM
hey..glad things are picking up..glad hub by is spportive..good luck with everything on monday..


Title: Re: Bad, bad pain night!! Help!
Post by: Nettan on October 04, 2004, 09:28:25 AM
Hey Ntgrl !!

I hope you are doing fine. In some way I've missed your thread and I'm sorry for that.
Sending you my hugs and thoughts.

Nettan  ::)
Title: Re: Bad, bad pain night!! Help!
Post by: BuffettBarbie on October 04, 2004, 05:22:29 PM

Glad you are feeling better!  You must be feeling somewhat better if you are getting "freaky deaky" with your hubby!  He he he....

Many hugs,
Chris  :)
Title: Re: Bad, bad pain night!! Help!
Post by: ntrgrl on October 05, 2004, 06:53:40 AM
Hey Everyone...thought I'd update first day back an PT.

Well, I was really stiff and tight when I started pedaling the bike. By the time all exercises were done I was having a throbbing pain throughout the knee and my hamstring wasn't happy neither !!!  :-/   :'(   :o

My PT put heat on it afterwards (something new...) I DO NOT LIKE HEAT  :o    :-/     :'(

Apparently the spasms and pain thereafter is normal for the amount of ROM I'm acheiving. Right now I have a twinge in the inside ( ???) of the knee. I'm not understanding that as the LR was on the outside.
ANY THOUGHTS ON THAT ??? Anyone??   ???     ???

Thanks again for all the support.

:-* Hugs, Ntrgrl