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My First Post-Waiting to go for a doctor's visit-sorry it's long!

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Chronic Pain
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Posted 8/21/2008 12:23 PM (GMT 0)
Hi everyone,

    I've been reading for a few weeks and started to post several times but thought my story might be less than interesting.  I don't suffer from back pain and to be honest I don't know how some of you get through each day! 

     I'll try to give you a quick rundown of what brought me here.  I'm a 42 year old, married mother of two and work at an Elementary school.  Several years ago a roller blading accident shattered my right elbow.  Seven surgeries, an artificial piece replacing the end of a bone in my forearm, external fixator and seeing the very best doctor's in the country and it's not repaired.  Essentially everything that keeps your elbow in place and moving was shattered in my fall.  I have fairly good range of motion even though my right arm doesn't straighten anymore and I can't turn my hand palm up.  I'm in constant pain.  My ortho surgeon told me to bring in disability papers and he would sign them but I don't want to do that!  I stayed home with my children for several years and enjoy being back to work.  I'm afraid if I stayed home I wouldnt' be able to keep my mind off of the pain.  I did decide to move from the classroom and accepted a position as the school librarian in hopes of making it a little easier on my arm. Nothing can be done, surgically, yet to repair it any further.  I'm in a holding pattern until I get older and then they'll do a total elbow replacement.  The replacements aren't very good and only last aprox 5-7 years plus you're limited to lifting less than 10 pounds with them.  That's not practical at all for my lifestyle right now!  The current replacements also have been causing secondary fractures. 

     I'm on the lowest dose of Vicodin that you can take but it's not working very well anymore.  I was referred to a PM but they refused my case because they don't care for elbow patients.  They said they don't have much success with them.  My PCP is wonderful and does what he can to manage my pain.  I've tried the anti seizure drugs but didn't do well on them.  I actually passed out while taking them.  I fell, hit my head on the fridge and ended up with a very nasty concusion. 

     I'm sitting here waiting to see my PCP, later this morning, for another review of meds.  I hope he can find another option for me.  I'm tired of not sleeping well and struggling to get through the day.  I don't want to be exhausted by the time I get home at night.  I have two wonderful daughters and a husband I want to enjoy doing things with.  I also don't want to feel "spacey" or lethargic when working with my students during the day. 

Thanks for reading if you've lasted this long!

Kathy

Posted 8/22/2008 5:41 AM (GMT 0)
Wow, that sounds awful! It drives me crazy when PM's won't accept certain patients because they haven't had a lot of success. They should at least give it a try. Everyone is different. Is there another PM group you can try?

Hopefully by the time you can get an elbow replacement, they'll have improved the hardware. I don't know anyone that's had an elbow replacement and now I know why. Knee replacement is in big demand so the technology is improving, the new hardware is way better than the knees from just a few years ago.

I am able to work and I know, for me, not working would be worse. I also teach and I have a harder time in the summer; I'm less active, have no routine, and no reason to move around. I get frustrated when work wears me out so much that nothing is left for my family (and me.)

I have nothing to offer you about pain relief. If you don't get answers soon, try another post and ask for meds advice in the topic sentence.
Posted 8/22/2008 2:49 PM (GMT 0)
Carica,

Welcome to the chronic pain forum of Healing Well. I am glad you are here, though very sorry to hear of your elbow pain and difficulties. I think you are between a rock and a hard place without the surgeries being much of a success. That is too too bad.

I understand how you would want to work to keep busy and I think that's a smart thing to do. Can you handle the library position so far? You didn't really say. I hope it is working for you.

As for pain meds, you have to give them a try. There are mild ones and stronger ones. Perhaps a mild one would not make you so drowsy, like ultracet or even darvocet. Keep communication open and clear with your doctor and don't give up.

Please keep posting with us. I look forward to getting to know you via this forum. Also, don't forget the chat rooms as well. There are a lot of nice people on chat as well who are in chronic pain.

God bless you, Carica and gentle hugs,

Lindaloo
Posted 8/22/2008 8:17 PM (GMT 0)
Hi,

My quick comment is concerning PM clinics - maybe you need to find a clinic that is willing to work on pain management from all aspects. I have learned, mainly from this board, that there are two very broad categories of the approach that pain clinics take. I use to think it was the difference between academic PMs and stand-alone / for profit groups but I now I know that is a too cynical view. Basically what I notice is that those PCs that advertise on TV, radio, newspapers that they treat back-pain, headache, "arthritis pain" etc are clinics that are looking to do some kind of procedure and shy away from addressing pain through pharmacology. The clinics that are associated with medical schools / tertiary care seem to be more willing to address pain from both approaches: intervention with "procedures" and with medication (again my cynical side believes this is true because they end up with all the surgical failures that the surgeons send their way :) ).

In my case, my PM doc is associated with a medical college and practices out of a tertiary care hospital. Our approach was to immediately get the chronic pain to a manageable level using narcotic medication. As we were "tweaking" the narcotics we initiated a few procedures - like myofascial massage through the PT department, Trigger point injections to release scar tissue (from previous surgeries), TENS units to try to interrupt the pain signals, adjuvant medication (like the anti-eplieptics you mentioned, muscle relaxants, anti-depressants, etc), and lidoderm patches. In addition, she had me visit a pain psychologist who was very helpful with practical suggestions such as pacing your work load as well as offering relaxation skills. Once we pretty much stabilized my pain with all of these she released me to my PCP for long term care (I was with the PM doc for three years - saw her every three months - more at the beginning). Now my PCP is responsible for my narcotic 'scripts; which for me ended up to be the only effective treatment (I have been on narcotic pain management for over 8 years now). My chronic pain is also a result of trauma - from surgery gone bad, basically.

I am sharing this detailed description to demonstrate what the right pain clinic could do for you. How I see a successful interaction in your case is to get your immediate pain under control with medication (narcotic or otherwise) and then a referral to PT / OT and a pain psych to address the long-term aspects of coping / managing. I believe that this could be very effective for your situation. Personally I do not believe that a good PM clinic can ever say that they "do not have success" with "x" type of cases. Basically it just means that they do not want to treat those cases for whatever reason. I cannot ever imagine that a academic pain center would ever refuse a patient using that (il)logic. There are always options - even if the option is simply finding the right narcotic at the right dose for the specific patient. Unless a patient cannot tolerate narcotics, there is always a way to treat pain if a doctor and patient is willing to consider all options - not just looking for procedures that "cure". Thankfully, my two docs are entirely aware that my situation will never be "cured" but only managed and that their role is to be successful managers. A knowledgeable clinic - with a broad spectrum of patient-type experience - can offer many options, I believe, and your situation should be no different than mine it seems.

Hopefully your PCP will have referral options available for you - or that s/he will be willing to manage your pain practically and effectively.
Posted 8/22/2008 9:05 PM (GMT 0)
Some well spoken points Patti............................................


Lindaloo
Posted 8/22/2008 11:36 PM (GMT 0)
Hi Carica and welcome to the HW forum. I have double joints at the elbows and cannot imagine if I ever hurt them how much pain that would involve, so I have been very careful about keeping them in good shape and not to injure them.

I am sorry that you have to join us on this forum but as I was told a few months back when I joined we all have one thing in common.....Chronic Pain. No matter where that pain is it still connects us all. I have Failed Back Syndrome.....Chronic Pain.....Nerve Damage.....and Degenerative Joint Disease. It is not easy living with the pain of these problems but I am determined to not let it rule my life even though it has to some extent. I do hope that you find some relief from your pain and wish you the best in your search for answers.

Scarred
Posted 8/23/2008 1:07 AM (GMT 0)
Hi, Carica,
I also wanted to welcome you to the forum. I'm low on energy at the moment, and you've been given some great info., so I don't have a lot to add. I would say that you may have to make lifestyle adjustments that you might not like (most all of us have to). I say that after reading about lifting 10 lbs., because you could be making things worse or at least aggravating your symptoms by movements, lifting, etc. We all hate to come to that point, but I'd definitely suggest following any recommendations a good PT has made.

Best of luck to you!

PaLady
Posted 8/23/2008 6:02 AM (GMT 0)
Hi Kathy!
I'm wondering about a couple of things. Are you taking anything to help you sleep at night? Also, are you exhausted from the pain, the pain medicine or just from not sleeping?

Maybe if you could get something to help you sleep that would help you have more energy to face the day. Getting more sleep might also help lessen the pain a little. Some of the newer meds like Lunesta & Rozerem don't have the same "hangover" feeling that the older models often cause in the morning. Maybe you could try that?

I used to teach (& am finally looking forward to getting back in the classroom after re-certification classes are complete) so I can relate to the idea of needing to be on top of your game when you're with the kids. I know I hated taking narcotic meds before 3pm, but if I waited the pain would be completely out of control by the end of the day.

My PM used to write me for Provigil. It's on label for treating narcolepsy and sleep-shift disorder, but docs write it for a lot of other reasons; I found a really low dose (25-50mg) worked perfectly for keeping me awake & alert for the school day and for taking care of some things into the early evening. It keeps you awake for a good 13-15 hours, so you need to be sure to keep a tight schedule for sleeping & taking meds, but it made a world of difference in how alert I was. By mid to late evening I would still be awake, but it was harder to focus as the medicine started to wear off. It is approved for long-term use.

Hope things work out for you!
frances
Posted 8/28/2008 7:18 AM (GMT 0)
Thanks to everyone for your kind and thoughtful replies.  I haven't been able to check back because the first week of school is a crazy one! 

The visit with my PCP was so/so.  He wants me to see my ortho surgeon again for an updated MRI.  He increased my hydroco by one tablet a day, added Trazadone to help me sleep more soundly and put me back on Lidocain patches. 

We had a long discussion about PC doctors.  He explained that the kind of injury I have involves several different sources of pain.  In his opinion, the pain is coming from the bones, loosening of my reconstruction, scar tissue and nerve damage.  He said the combination of problems together with the fact that it's a moving joint make it very hard to treat.  I've had nerve block injections and tried the anti seizure meds without good outcomes.  After calling several PC docs he doesn't think there's much they can do and can't find one that is willing to give it a try.  I was disapointed because I live in a pretty large city with a teaching hospital.  I'm lucky that I have a great PCP.  He knows I'm in pain and works hard yet cautiously to treat it.  As of now I'm just experimenting with when the patches bring the most relief because I can only use them 12 hours a day.  I'm going to just try and keep a positive attitude and be grateful that I can do as much as I can!

Thank you again for your replies.  I really appreciate your advice!

Kathy

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