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Need Pain Management - What do I do?

This is long, I am sorry but wanted to get it all out.

I have been dealing with severe knee pain for years...pain that interferes with my daily activities and my life.  We aren't talking about a little soreness and tenderness...I'm talking about pain that I cannot ignore, brings me to tears, and makes it near impossible to live a "quality" life.

Long story short, I had some horrible experiences with doctors.  Last April I had the worst experience ever.  It was my last "private" medicine appointment ever.  I was referred for a surgical consult from an orthopedist.  He breezed in, said he doesn't want to order an MRI because he didn't think I had a problem with my knee and 1 minute after coming in, he went to leave.  I kind of blew up at him...how could he treat someone this way, blah blah.  He just left, no response, no apology, nothing...I cried for about 5 minutes before leaving that office.  It was humiliating and I felt like I'd never ever find a doctor that would take me seriously.  I swore I'd never go to another doctor again.  But, a friend urged me to apply for VA benefits because my knee problems were from my 8 years in the Army.  So I did.

I received my VA benefits and began getting treatment at my local VA hospital last June 2012.  I like my doctors well enough but the process is always long and drawn out.  I just had my MRI this past Thursday after going for treatment for this pain for over a year.  They prescribed me a bulky knee brace.  I've gone through rounds of physical therapy that actually only made it worse.  I am on tramadol 50mg 4x per day and up until recently it seemed to work well enough.  I have good days and I have bad days.  Today, so far, has been a very difficult day.  As have the last several days.  At some point during last night I must have moved from my normal, comfortable left side-sleeping position with a pillow between my legs to support my right knee, to my back.  I woke up in terrible terrible pain.  It took me 1 hour after taking 1 tramadol and 4 ibuprofen (Advil, 200mg each) before I could even begin getting ready.  Since I sit for work and have a cushioned stool to place my leg on, I decided to go in despite the pain.  

I cannot go to the VA hospital emergency room.  I went this past February for my severe knee pain and the doctor who I saw treated me like a crimial...he told me flat out if I ever came back for knee pain, I would not get any medications...he planned to take a note.  I was appalled...I had NEVER gone to the ER ever for ANYTHING nor did I even ASK him for ANYTHING!!!  He gave me tylenol with codeine which didn't work AT ALL.  The tramadol was WAY more effective so I threw those pills away...what a waste of time and energy (it was quite a far walk from the parking lot to the ER and took me a long time).  For about the hundreth time, I felt discouraged and sad.  I didn't even want to go to any of my follow up appointments but I did and told them what happened.  My doc told me to go if I needed to but I won't...what if I run into that guy again?  No, it just is not worth it.

Anyhow, back to today.  I am in severe pain.  I have been crying off and on all day...I cannot take this anymore...my life ***** and I'm always in a bad mood because of my pain.  I want to enjoy my life...not hate it.  I am 33 years old...I should not be feeling miserable most days of my life.  I should be enjoying the park and stuff with my kids and my boyfriend...my family is wonderful...so why can I not enjoy them like a normal person would?!

I am able to email my doctor through this private message feature from the online medical portal.  So I sent my doctor (primary doctor) an email at 8:30 am.  I have not heard anything yet.  I want to know if my MRI showed the problem and what she plans to do to help me.  

I have been reading up on Pain Management clinics.  I know the VA has one because I've walked past it before.  I want to inquire about this without seeming like I am trying to get medications or anything.  I am trying to get relief, yes, but it is due to pain...no other reason.

My question, after all this, is how do I bring this up?  Do I need to wait until she tells me what the MRI found?  My ortho (who I see next Tuesday) said I am much too young for a knee replacement so whatever it is, if surgery cannot fix it (she felt it was unlikely to have a surgical solution), chances are it is something I have to live with until such time when they feel a replacement may be right for me (if ever).  In short...it appears to be something I must learn to live with like I have for the last 4 years...but it keeps getting more and more painful, not less so.  The pain is awkward…it is oftentimes hard to describe…and it doesn’t respond to touch…you can touch my knee cap all day long and it won’t hurt.  But it hurts to walk, it hurts on stairs, it hurts lying with my leg straightened, it hurts to sit too long, it hurts behind my knee, and it hurts inside.  IT JUST HURTS!!  I elevate, I don’t; I rest it, and I don’t.  I use heat, I use cold…I use both.  I use whatever even helps a little.  I have every hot and cold pack you could imagine…even frozen PEAS!  I have every kind of topical pain relief cream the pharmacy sells…one you keep in the freezer, every “sport” cream on the market, and some different ones such as a “horse ligament?”.  If it’s been recommended, I’ve tried it….I try it even it if isn’t recommended!  I've had probalby about 6-7 cortisone injections since this pain began (they stopped working) and have taken months worth of vitamins glucosamine/chondroitin (sp?) but, again, no relief and they were expensive!!!  

I don't know what to do and I am getting very discouraged...these flares are becoming more and more frequent despite my best efforts to keep them at bay.  But I am not sure how to approach my doctors (primary or ortho) about the idea of pain management.  I messaged my primary doctor today (not about PM) but I see my ortho next Tuesday.  There is a language barrier with my ortho but she does seem to get what I'm saying and when she feels my knee she winces and gasps at the cracking and popping she feels and hears.  I do feel like they BELIEVE me but I've never outright asked for ANYTHING from them.  I know knee pain is difficult to treat...there isn't a whole lot that can be done from what I understand.  The idea of being on either anti-inflammatories or narcotics both scare me.  The NSAID's because of the internal bleeding and cardiovascular risk and the narcotics because I don't want to get "hooked."  I've also read cortisone is TERRIBLE stuff too!  I've already read I'm going to have a heck of a time getting off the tramadol and I'm not looking forward to that...it appears my doctor did not put any refills on this last month so it may be within the next week, yikes!  I'm not sure what to expect from that but looking up various items today brought me some scary information on getting off tramadol.

Sorry for all this rambling...I do not know what to do and I feel so helpless and alone.  I hurt so bad and I just want to enjoy my life...I have zero issues aside from my knee...I want to get out and life my life like I used to!  I didn't think that was so much to ask for but it turns out it has been. :(

Thank you for your time,
Michelle
6 Responses
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Avatar universal
Looks like surgery in headed your way...

Glad you have a reason for the pain..Just be prepared for the rehab...

I had to go 2 x per week to PT after therapy for about 2 months, but all good now.

Make sure you DO your rehab exercises so you can heal properly.
Helpful - 0
3112530 tn?1434032033
Call your patient advocate to put a fire under your doctor. The secure messaging system is meant to get answers to the patient. The doctor is reported if he does not answer. (I know this from talking to my doctor) Get answers, do let this go, you have the right to know and get treatment. Check the ortho clinic, they have helped me with knee tears.
Get the advocate on it!
Helpful - 0
Avatar universal
Thank you trixy!  I read my MRI results this morning and there are some major issues:  partial tear of the ACL, tear of the medial meniscus, partial tear of the medial collateral ligament, osteoarthritis, and chondromalacia patella. Basically, my knee is totally screwed up.  And, all this time doctors have ignored me or flat out told me there was nothing wrong with me.  I am angry but now I am glad there is something in black and white that documents what I've been telling them all this time...IT HURTS!

I just wish my doctor's office would call me back!  They have yet to call me back from yesterday or today and I'm in the midst of a REALLY bad flare...

Thank you for your support and kind words...I hope surgery can help me receive some relief...
Helpful - 0
Avatar universal
Hi there, you sound exactly like my husband, he has had 2 knee surgery's and still is in a lot of pain. Its really strange. There are days when he has trouble just getting to his feet. Anyway, he got blood work and is positive for gout, so you may have more going on, I've read that gout can occur in any of the joints, not just in the foot because its a form of arthritis, so maybe you should ask for some blood work to rule that in or out.

Another thing to remember is no ones pain is alike, when someone tells you that it shouldn't hurt because of statistics, or whatever doesn't mean that it doesn't hurt you in particular. So keep going to the doctors, keep on them until you can get some answers and some help. Keep us updated, and good luck!
Helpful - 0
Avatar universal
Thank you Totie!  I've had this brought up to me before but never by any doctors?  Right now I've only been diagnosed with patellofemoral pain syndrome because there was no MRI to show anything other than that.  I'm anxious to hear the results and frustrated because, of course, my doctor has not gotten back to me today.  I suppose I'm destined to just deal with my pain on my own.  Oh well, I certainly cannot be blamed for not TRYING to get any help.  For living in an area where the medical care is supposedly "top notch", I've certainly had the WORST experiences ever.  Ugh, I'm beginning to feel like I'm done with doctors again...all it has costed me is a LOT of money I don't have.

Thank you again for your suggestion...maybe I'll get lucky and actually get a response from my doctor so that I may discuss some options!!!  Sorry to be snarky but I'm very frustrated and down today.  I swear it is the worst feeling to have such terrible pain and the people who have taken the hypcratic oath to help you don't...
Helpful - 0
Avatar universal
In my opinion it sounds like you may need your knee scoped.

I had knee pain, however, mine was due to scar tissue from knee surgery back when I was 18yrs old (43 now).

I know quite a few people who have had their knee scoped and it got rid of the pain, now some say they still have intermittent pain, but no on going.

I get a sore achy knee but depends on my activity.
Helpful - 0
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