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jessupl73
Regular Member


Date Joined May 2011
Total Posts : 28
   Posted 6/15/2011 9:09 AM (GMT -6)   
I posted awhile back about the pain I've been having for the past year and a half or so. It goes from numbness in my pinky and ring finger, wrist pain,  to forearm pain, outer elbow pain, shoulder pain (which is unrelenting and just never stops) and neck pain and spasms. I even get occipital headaches and jaw pain on really bad days.
 
I've had every test on in the book done and tried so many meds, I can't even remember them all. All the tests have been done on my cervical spine and/or shoulder, including multiple MRI's, Nuclear bone scan and nerve conduction testing.  All came back negative although I do have mild spondylosis of the C5-C6, C6-C7 area with mild disc bulging. I've been seeing my primary care doctor about this the entire time and she's out of ideas. She just finally wrote me a presciption for oxycodone which I started in December.
 
I've also seen a couple of orthopedic doctors and the neurologist that did the nerve conduction testing. When they couldn't find anything they told me to find a good pain center. I went to two, and was unhappy with both of them. One of them told me to "find my happy place". That's really hard to do when your shoulder feels like it's on fire and you are having extremely painful neck spasms.
 
Anyhow, I started realizing that my shoulder pain seems to act up at the same time that I have wrist pain. And then I wondered if maybe the pain was coming from my wrist or arm rather than coming from my c-spine area like everyone has always assumed. I found cubital tunnel syndrome by researching online (like carpal tunnel but a different area of the hand or wrist). I was reading that people can have double crush syndrome where multiple areas of their ulnar nerve can be injured and it can lead to shoulder and neck pain.
 
I found a new orthopedic doctor that specializes in hands and wrists and he did a few range of motion type tests in the office and from that told me he agreed with me and now I have another neurologist appt on 6/24/11 for more nerve testing. He told me that persistance pays off and that by continuing to be my advocate and doing my home work will pay off and that physicians just telling me go to a pain center at this point in the game is ridiculous. He is the first doctor I've seen through all of this (besides my primary care doctor) who beleived me and was supportive of me...and who seemed to have a brain and know how to use it. And the best thing he said to me is that my body is the best indicator that I am having nerve problems..no matter what testing shows. He really seemed to be on my side and I sense he really wanted to help me. What a change from the other doctors!!
 
Anyhow, I went back to my PCP to tell her this. I was really excited. I also needed to talk to her about my meds. They've put me on oxycodone 10mg, 3X daily and klonopin. She wrote my last script for klonopin as follows: Take .5mg to 1mg (I had 1 mg pills) every 12 hours. I found out that if I take .5mg  in three divided doses at the same time as the oxycodone I could get better pain relief. I told her this at my last appt and she told me no problem. She told me I still had to see her every couple of months for the written script of oxycodone but the klonopin was able to be refilled as I needed it and it was no problem.
 
Now, here comes the fun part. The pharmacy would only give me 30 pills at a time. If I was taking two pills per day (which was an option since the script was written this way) I would be done with the meds in 15 days. Using 1.5 pills a day like I do, gave me 20 days. I was thru those last week. I started calling my doctors medical assistant on Wednesday so there would be plenty of time to get it filled in time for the weekend. I called Thursday and Friday as well. No return calls and the pharmacy kept telling me they couldn't fill it until 6/23/11. That would mean three weeks without the pills. So that's like two weeks on and two weeks off and means my pain gets better for those two weeks and then I'm back in hell for two weeks.
 
This has happened before and I've ended up in the ER or urgent care. This time I decided to call my PCP's office and speak to the on call doctor. It was another doctor that took my call (not my PCP). I appologized profusely for bothering him on the weekend and explained the situation and he told me no problem, he'd fill them and to give him 20 minutes.  I kept appologizing and he told me "Don't worry, this is my job".  He also told me that since the medical assistant was NOT doing her job, I needed to come down there to the office in person on Monday and give them a piece of my mind. This suprised me, since this doctor works with my PCP every day.
 
Instead of doing that, I set up an appt for the following Tuesday with my PCP to discuss it with her and also to tell her that I may have finally found the cause of my pain (the ulnar nerve issues) and to discuss why I am having difficulty with my refills. The first thing she did was shoot down my idea of ulnar problems. She told me that since I've already had nerve conduction testing it was a waste of time to try it again. I told her my personal feeling on it was that the last neurologist was looking at the wrong area and was also a fairly new neurologist and the neurologist that will be looking at me on 6/24/11 was a different one and had been doing this for a long while and specialized in hand and wrist pain. And if I'm not mistaken aren't there such things as false negatives?
 
Then came the really good part. She told me I never informed her I was taking .5mg of klonopin three times a day and so I had increased my usage and basically called me an addict. I took the empty pill bottle out and showed her...she'd actually written the script for MORE than I take and I also told her that I'd been very clear with her about exactly how much i take and when I take it. (This same thing happened when I went from 5mgs to 10mgs oxycodone). She told me that one of her patients had just been sent to rehab for smoking klonopin and she knows it "feels good" but I can't just keep upping the dose. She was very short with me, told me I needed to sign a drug contract and left the room, leaving the medical assistant to prepare the document and have me sign it. I signed it, since I have nothing to hide and they wrote it up with the current amounts I am taking. I also made sure they made me a copy.
 
I'm just really hurt though. How do doctors get off on treating their patients like that? I waited for about 8 months in excruciating pain before I even asked for something stronger...and when I finally seemed to get the combination right and I'm starting to feel better and can get off the couch and go to work, I get treated like a drug addict.
 
And by the way, I did some research on why Klonopin helps and I was reading that it helps slow down the firing of your nerves and relaxes your nervous system. So I guess it makes sense that it would be so helpful in addition to pain medication when I'm having nerve related problems.
 
I just feel really hurt and depressed and lost about this. I guess I need to find a new PCP, but I know it's dangerous ground since I signed this drug contract. I have an appt with a naturopathic doctor on Friday who I was going to maybe start seeing as a PCP. I'm thinking if I take my pills, the drug contract and everything and tell him everything that is going on that it should be ok. I don't know. I don't expect him to prescribe for me, but it would be nice to have a PCP that listens when I talk on occasion.
 
I'll know more after my next round of nerve testing..but until them..I'm kinda stuck. I've also been thinking about continuing to look for a better pain center..one that might consider me a candidate for other things..like possible injections etc. And one that is more informed on medication and their usages. I feel like I kinda know more than my current PCP on a lot of these issues. If this level of pain continues and they continue to not find a cause..wouldn't it be better to be part of a pain center? One that is compassionate? I'd also really like someone to discuss with me the slow release meds vs. the quick release one's I'm taking now..possible nerve root injections or denervations/ablations. At this point, I'd also like to talk to a pain psychologist..because I'm starting to get so depressed that some days I just want to cry and cry and never stop.
 
Anyhow, sorry this is so long...just a lot going on. If you made it all the way through..thanks for listening to my gripes.

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 6/15/2011 10:08 AM (GMT -6)   
Sorry to hear you are having so many troubles:(...The good part is that it seems as if you've found a Dr. who is looking at another possibility besides your neck to figure out your pain generator...So I hope those appts go well...

As for the medicine issue...a few things from what I know in PM and from being friends with my Dr. outside our appts..

The DEA is getting much more strict these days with non Pain Management Drs. prescribing pain meds..as well as anti anxiety meds like Klonopin, Xanax, Valium...Because a GP/PCP is not specifically trained in actual medications like this as a PM is..So the pressure is mounting for them to provide detailed reasons why you are on the meds...what are they used for..and to send you to Dr.s to actually help solve the pain issues...

So that could be one reason...

I'm not sure why your Dr. didn't put 60 pills instead of 30 on your prescription when she gave this to you if she wrote for it to be taken this way...maybe she meant it to only be once in awhile to take two?
A prescription always reads the number of total pills (for a 30 day period) how often to take them and what milligram...

So...the Pharmacy was going on what the actual prescription is written for, which was only 30 pills...they can't change that...so it was obviously something you needed to figure out with her...and it sounds like there was a misunderstanding with how many to take per day...

This is where as patients...because Drs. are extemely busy...I know it's not an excuse...but we have to be extra diligent in our own care...but make sure if there is a change in medicine...the minute you get the prescription....read it over BEFORE going to the Pharmacy...WHILE you are in their office...with the Dr...read it and see if the number of pills match out and the prescription is correct....

Because sometimes...the Nurses will type out the prescription from the Dr.s notes...so there can be errors...

Also...yes...many Dr.s are all moving to having patients on any narcotics to sign a contract...this includes random pill counts or urine tests...This is actually the standard in VA right now and in other states...

And also...it's unfortunate but yes...people abuse all sorts of types of medications...

Just FYI...but Klonopin is not primarily used for nerve pain...it can be 'off label' for this...but it's not it's main active ingredients pupose..It is for control of seizures and panic attacks..

Medicines that are primarily used for nerve pain..are Lyrica, Cymbalta and Neurontin...so maybe your new Dr. once they do the tests...will decide to prescribe this for you to help.

There can be a very small percentage of 'false negative' nerve conduction studies or EMG's....but it's not very likely...so I wouldn't worry too much about that...

Unfortunately....we live in a world where everyone from tweens to adults can abuse so many different types of medications...from narcotics, to Benzos, sleep meds, ADD, the list goes on...so I know it's hurtful or frustrating...but it's the reality out there now...

This makes it more difficult for both Dr.s and true Chronic Pain patients...everyone has to go through more scrutiny and follow everything to a tee...

For me..even being friends with my PM and going there for years...never having an issue...he is now required by law to have the contracts, urine tests and pill counts...It's more work for their staff...but he actually is ok with this as it helps weed out those who aren't there for the right reasons...

And for myself...I certainly don't mind it at all as people like us are following our prescriptions as written and not abusing them like buying/selling...or taking anything illegal...

The best thing to do is read the prescription when it's handed to you to double check for mistakes right then and there...make sure that your Pharmacist is part of your 'team' and if there's any questions...they will know you and discuss things calmly if it's an insurance or Dr. mistake...and then be extra diligent to keep detailed records of all our meds....when and how much we take each day...(I keep a log)...

I think after your tests and conclusions from the Neurologist...it may be best if needed to go ahead and find a Pain Management Dr. to handle all your medicines....as well as they use dozens of other modalities to help with your pain in addition to medicine....We can't just use that only to help us...

As well as the PM can discuss if it's time to go on a long acting medicine or try an actual nerve pain med...or add in a muscle relaxer as well..

I think the Pain Pscychologist is a fantastic idea..I used my counselor for some time to help me adjust to living with chronic pain...

I also use...excercise, yoga/stretching, PT, aqua therapy, Cognitive Behavioral Therapy, injections, massage, acupuncture, eating Organic, not smoking, etc everyday/week/month to help with my pain..

By always using other methods...this also helps keep my tolerance to the medicines very low...I've only had one increase in 2 years...

I do wish you luck and keep us posted in all that's ahead..
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

jessupl73
Regular Member


Date Joined May 2011
Total Posts : 28
   Posted 6/15/2011 11:40 AM (GMT -6)   
Thanks for the response.

Actually, the reason I'm on the meds that I'm on is that I've already run the full gamut of other medications and they have not helped. These include (just off the top of my head), gababentin, cymbalta, robaxin, skelaxin, amrix, oral steroids, ativan, valium. For every one of these, I took them for the full time and worked up to the full doses that were supposed to help me...but none of them gave me any pain relief.

I've also tapped into alternative therapies. I fully beleive that these therapies in addition to the pain meds will help me. I've done months and months of acupuncture, chiropractic, physical therapy, massage therapy, etc. I am now currently seeing an osteopathic doctor for weekly "massages". I put that in quotes because they are very, very painful. I've been told that these deep tissue massages increase blood flow to the affected area, help to stretch these areas out and help the body to heal. I'm more than halfway through this series and still in the same amount of pain. On Friday, I'm seeing a naturopathic doctor.
Next month I start seeing a physical therapist that is also a liscensed yoga instructor. I will be seeing her once a week. It is my PCP that suggested this.

This is why this visit with my PCP was so disappointing. At no point since this started have I stopped trying to find alternate therapies. I have never just sat back and requested pills. It just got to the point where the pain became too much to bear and the alternate treatments weren't working. And walking around with an ice pack attached to my shoulder or my bean bag that I heat in the microwave all day just isn't practical. (Nor is using so much muscle rubs like Bengay that I actually caused the skin in my pain areas to break down).

So yeah, I think you are right..I think depending on the results of this testing I have coming up, I should seek a new Pain Center to help me out. At this point, it's about quality of life. But the two I have visited so far just did not feel right. I'd be all for injections or other therapies but so far have not been offered these other therapies.

It's a mess.

Again, thanks for the replies and I'll keep trying. It's just so difficult to be patient when you are in pain. And while I totally understand why my PCP is reluctant to prescribe meds and has had me sign a contract, it was her hateful attitude about it that really hurt. I'd rather just be told she won't treat me anymore rather than be treated with disrespect. Especially having known her for the last 15 years and sending lots of my friends her way as well.

Oh, and as an aside..I worked for a Pain Center for 2 years...so I completely do understand the Pain Contracts...like I said...it was just the way it was presented that was upsetting.

Thanks again,

JessupL

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 6/15/2011 12:04 PM (GMT -6)   
I realize that you have tried other methods...the main thing is to keep trying to find and do whatever you can...like exercising each day to keep healthy...in whatever way you can..by aqua therapy...just walking..recumbent bike..etc..

And unfortunately...when trying a new PM...they will look at your past tests, medicines, procedures, etc...but you will be a stranger to them as they are to you....So they' may' start you with a lower dose or different narcotic...this is the part about being patient with a new Dr....hopefully that won't happen...but just be prepared if it does...it doesn't mean they aren't a good Dr...

But most Dr.s don't feel comfortable..as I'm sure you know from working at a pain clinic...to just have someone come in new and say.."I've tried everything...only a narcotic works...I want this"...

Not saying you are doing this...but it does take time to build up trust on both ends...

And with your PCP...it could have been that she just got a notice from the DEA about prescribing...or one of her patients overdosed on something...or go in trouble with the law...who knows...something is obviously going on for her to treat you a certain way after 15 years...

That's why it's best to find a PM that you like now, to take over your prescriptions...At least they will see that you have a good record from her office as well as the Pharmacy...(they are now being linked statewide so records can be pulled quickly to see fill dates, dosages, etc)...

Believe me...I've been doing this for so many years...as many have here as well...I can totally empathize...I actually went through a terrible surgery...my 2nd fusion...and awful pain Dr. before I found the one's I have now...I am very blessed...

So it's about being willing to try something new if you trust the new PM...and working with them to find a way for you to have a good quality of life...I live with a 5-7 on the pain scale each day...that's the best we can get with chronic pain...and again...I take the absolute least amount of meds to keep tolerance low and in case of future surgeries...

I really hope this new Neurologist helps figure out what is going on and maybe has some treatments or even a surgery if it will help...

Good luck..
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

jessupl73
Regular Member


Date Joined May 2011
Total Posts : 28
   Posted 6/15/2011 12:29 PM (GMT -6)   
I agree with all you've said. And I totally want to get back in shape!! For awhile I was walking. I told myself I'd do this even if I had to put my arm in a sling to do it. It's my arm and shoulder...my legs are fine!! And most likely getting in better shape and losing some weight would help with this condition..but it's so hard to get motivitated when you feel like crud.

I've gotta at some point get back up on the fitness wagon, if for nothing else, the endorphins.

I'm glad you've found such caring and compassionate doctors. I think I'm on my way to finding the same..it's just going to take some more time and some patience.

I'm just NOT a patient person.

Betcha can't tell that from my post.

Anyhow, thanks for taking the time to respond to this. I appreciate your advice and wisdom. I'm still learning and I think in a way going through a bit of a mourning period for my old life. I go through phases of feeling sorry for myself and then I try to remember how many people have much worse pain than me.

The one benefit to all of this is it has helped me develop more empathy toward other people struggling with disabilites. I feel for everyone on these boards that have dealt with chronic pain for years. It just doesn't seem fair and I'm sorry for everyone that has to deal with it.

jessupl73
Regular Member


Date Joined May 2011
Total Posts : 28
   Posted 6/15/2011 1:35 PM (GMT -6)   
Just reflecting more on everything today.....

And thinking this over..there are several other benefits of this pain I've had. For one thing, you learn who your true friends are. Your true friends are people that know you are in pain and accept that and offer you comfort. Maybe they just make you laugh on a painful day. Maybe they take you out to eat because they know you need to get out of the house. I've lost some friends over this condition and now I know who my true friends are.

And secondly, initially this problem really tore my husband and I apart. He keeps his emotions very guarded and has had lots of problems with his family going through mental illness or just not being very dependable. Because of this, he wasn't showing me any sympathy and I really felt like he didn't care. Over the last month or so this has changed. He sees the impact my medications make on my overall mood when they are working and how much pain I have and the associated anxiety and depression when they aren't..or when I'm having a bad day. I finally feel like I'm getting some support from him. It took a year, but it's finally there. I really think this whole situation helped him to grow emotionally.

Also, I have a two year old daughter that I try to hide this from. Over the weekend I was crying and she came into the room and I tried to stop and wipe my face so she wouldn't see the tears. I was feeling like a horrible mom that day..just feeling like my pain was getting in the way of the fun her and I could have. She came into the room and said her first three word sentence that either my husband or I had ever heard. She said "I'm sorry mama". Then I started crying harder and I looked over and saw my husband crying which almost never happens. It was at that point that I realized they really are there for me..even my two year old daughter.

It gives me strength to think of these things and somehow I just know things will be ok.

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 6/15/2011 1:53 PM (GMT -6)   
Awwww....thank you so much for sharing all of that with us!!....

I totally agree about our pain showing us who are true friends are...In all my surgeries and pain issues...I feel extremely blessed...as well as my family who jumped right in to help out...from everything to providing meals, cleaning, washing my hair, walking my big 'ol dog...or like you said...just to make you laugh...or cry on their shoulder...

Unfortunately for me...I wasn't married to someone who tried to understand my pain...and have been divorced for almost 5 years now...we had some other issues so I can't say it was all that...but he was not a sympathetic or empathetic man..And I realize that some men want to 'fix' us...and feel helpless...he was the type to ignore it and me and pretend it wasn't there...

I dated a man for over 6 months recently..we are still great friends...but I finally got to see what a kind a caring man looks like...he always looked out for me...

I'm so happy to hear your hubby is coming around...that is fantastic! And maybe this will bring the two of you even closer!...

I am not able to have children...minus my cutie yellow lab...but I didn't 'have' him...LOL!!!

So I truly love to hear stories of everyone who has children on here...and how wonderul to get that love from her...yes you want to be strong for them at times...but you also can be vulnerable to teach them about compassion...and how a hug and I love You can make the pain so much better!!

It's definitely a process dealing with chronic pain...it's almost like a death or divorce...you go through all the stages of grief...denial, anger, sadness, bargaining, and finally acceptance...

We can still have our 'pity party' days...after seeing a story on this woman who was burned over 80% of her body because her 'boyfriend' set her on fire....she says she allows herself to have about 15 minutes per month to feel sorry for herself...then she finds ways to help others and live her life!!...Amazing!!

It takes time to mourn the loss of our 'old life'...the pre pain life we never gave a moment's thought to...and figure out how to still find joy, love, and laughter in our new life...it's harder some days than others...or when there are changes like you are going through now with the Dr.s...but we keep going forward..

Again..thanks so much for a great post!!!
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 
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