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OVERWHELMING office visit with pain management clinic. New meds prescribed. New Dx!

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Posted 3/12/2013 11:19 PM (GMT 0)
I had my first appt with a pain management clinic today. HOLY CRAP!! I don't know what to think.

First, he came right out and said he doesn't believe in fibromyalgia. But he would find out what IS wrong (aka: he believes there IS something but won't settle for dx of exclusion. Good?? I don't know...)

Second, he told me stop ALL medication and wrote scripts for new stuff.

1. CloNIDine HCl 0.3mg (for blood pressure. It skyrockets when I am in pain. Today was 157/101.

2. Gralise (I think its Naproxen. An NSAID that I've tried before without succes. I'll be trying it again)

3. Amitriptyline 50mg at bed time (scared to take this one. Using it for insommnia in place of Ambien)

4. Naprelan 375mg SR24hr (gabapanten (sp?) I believe. Scared to take this one too.

He dx'ed me with supraorbital neuralgie (ap?) and gave me a pain block. Took a while but think it's working.

He's pretty sure I have Cervical plexus (???) something or other. Has ordered an MRI of C-spine.  Touched me in a spot on both sides of my neck and I about dropped to the floor. I was born with a reverse curve of the C-spine and said it makes sense. I may have the name wrong. It's something I never heard of. I am to have a pain block on both sides, over 2 appts. Said if he's right and the block works, I could be 100% pain free. HOLY CRAP!!

Also something going on with my sciatic (sp?) nerve and my knees, can't remember what he said.

All overwhelming. Scared to death to change my meds but wasn't really happy with what I was on anyway.

If you are on any of the above, could you give me any details as to what I ~might~ expect? I know everyone is different.

Posted 3/12/2013 11:31 PM (GMT 0)
Ask him to write everything down and give you a copy.

If what you are on now isn't working, try something else. These things don't seem as if they are radical, even for fibro. Sometimes, fear of the inknown keeps us from change. Heck, if it doesn't work, then you can try something else.
Posted 3/13/2013 12:55 AM (GMT 0)
I would discuss your concerns and let the doctor know exactly how you feel.

I took Naproxen after surgery a couple of years ago, and ended up with gastritis a month later. I should mention, though, I have other issues, but I think the Naproxen may have pushed things too far.

Also took amitriptyline (Elavil) for many years for hyper-motility in the colon (chronic diarrhea of an unknown cause). It made me extremely sleepy, but was effective for the diarrhea, because it dries out the system. I took it an hour or two before bedtime, but I was still very sleepy the next day, for most of the day. Maybe that's just me, though?

I also take gabapentin (Neurontin) for nerve pain. Some people have real issues with it, but I haven't had any major problems, though I believe the dosage is quite low. I do find if helpful for nerve pain, but get a little woozy on it.  I believe it's this (or maybe Flexeril?) that has to be taken regularly or there could be problems; however, my doctor lets me take it as needed. May be something to discuss with your doctor, too. I think some docs say to take this regularly and be careful not to stop too abruptly.

I don't blame you for not wanting new meds. It's always tricky to get them 'right.' Perhaps you could ask for more natural alternatives? Just an idea. I hope all goes well for you.
Posted 3/13/2013 1:04 AM (GMT 0)
HI guys... well, 1~ Smarted, overwhelming or not, at least you are that much closer to getting help and explanations.. so YEAH.. 2~Amitriptylene, I started out on 10mg for sleep, that didn't do it, so I am now up to 30 mg..BUT I don't take it everynight..only after a week or so when I haven't had a good nights sleep or feel rested..but YES, it has that hang over thing the next day..so if your pills are in 10mg increments, you may want to start out smaller and see how that works for you.. also, go to sleep as soon as you feel tired..don't push thru it for ANYTHING..I found a couple of times if I took my meds (they took about 2 hours to kick in), then started a movie and tried to stay awake til the end, and pushed thru the need to sleep feeling, it had the opposite effect...then I COULDN"T get to sleep at all!!
SO, just a little heads up, of course everyone is different, but if you haven't taken it yet, it may help to know what MIGHT happen.. Good luck!
Can't wait to see an update on how you are doing!
Posted 3/13/2013 1:07 AM (GMT 0)
It was a very overwhelming appt. I kinda had to walk away and digest and research. NOW I'm ready to ask questions :-)! I'm game (I think) to what he has chosen. But I'm going to ask if I can start them one at a time to make Sure I tolerate them. Also, he's very into natural stuffs. His ultimate goal is to get you off medicine. This regimen he's lined up for me is to carry me through till I get the nerve blocks. Then he is pretty sure I could go without medication. Can you imagine that?!?
Posted 3/13/2013 1:07 AM (GMT 0)
I was just reading your other thread and I can't figure out why your PM is saying you need this surgery? The deep one is usually only done for those having something like a Thyroidectomy or surgery on the carotid artery.

For regular neck pain caused by herniated discs or something like stenosis....there are steroid injections or other type of nerve blocks that use lidocaine to "numb" the area....

But I have never heard of the deep cervical plexus blocks being used for pain relief....

I think you need to meet with this Dr. again and write everything down.....The "Cervical plexus" is just a term that means "neck nerves" pretty much. So it's not a diagnosis...

They really can't diagnose anything without getting imaging....and even after you get a MRI....you would need a Board Certified Neurosurgeon (Fellowship trained as well) to do the actual diagnosing...A PM Dr. is there to treat pain.

In regards to the medication....it's really about starting everything on low dosages, making sure you don't drive until you know how you are affected by them, and just realize that many times there are some nuisance side effects like fatigue, nausea, and even headaches that usually go away after a month or so.

That is why most Drs. ask that you try a med for that long to work the kinks out and really give it an opportunity to work.

He prescribed some pretty normal medications for spine/nerve and muscle issues so hopefully they will work for you.

I will quickly reply on your other thread but I really question a DR. who would jump to this particular procedure/surgery for just suspected nerve and muscle pain.


I've had dozens and dozens of steroid injections, nerve blocks, and 3 fusions in my neck along with still having active herniations in my lower cervical area as well as my lumbar. I also have stenosis and other issues....

Once a good Neurosurgeon figures out what is going on, they can recommend the best treatments which usually are a combination of things from physical therapy, traction, TENS unit, medication, injections, stretching, etc...

Keep us posted..

Post Edited (Snowbunny21) : 3/12/2013 7:17:07 PM (GMT-6)

Posted 3/13/2013 1:12 AM (GMT 0)
Yikes!! The amitriptylene he prescribed is 50mg!! Wonder if it's in tablets I can split?!? Haven't filled anything yet.
Posted 3/13/2013 1:18 AM (GMT 0)
You need to ask a Pharmacist about splitting any type of pill. They are better to know this than the Dr.
Posted 3/13/2013 1:20 AM (GMT 0)
That is a high dose to start out with. I think you can split them. I wish you luck with your med change. I don't like when doctors come along and switch all the meds. Especially when it is all at one time. I wish you the best and low pain...

Hugs, Karen
Posted 3/13/2013 1:21 AM (GMT 0)
Well, the reason he chose this block, I've got a reverse curve (VERY gross on X-ray) of the c-spine. Been on ALL kinds of meds that don't work. I'm fairly certain they use the deep block as he said he'll only do one side at a time incase my phrenic nerve is affected and he did order an MRI of my c-spine and he is a neurologist. Not sure if a neurosurgeon. He touched a pinpoint spot in my neck and I all but collapsed with pain. It was on both sides. Yes, I plan on contacting him tomorrow to get things more hammered down since I've had time to digest. I'm a savvy medical guru because of my background and he stumped me... Several times. I think I was so shocked that I couldn't even think of what questions to ask...
Posted 3/13/2013 1:29 AM (GMT 0)
I have a reverse curve as well....along with a LOT of other spine issues in both cervical and lumbar. With the one Orthopedic and 3 Neurosurgeons as well as 3 PM Drs. over all the years since this started for me back in 2001...I have never had a Dr. say they would use the Deep cervical plexus block...Again, that type is used mostly before the surgeries that I mentioned on the carotid artery or Thyroid.

It just seemed strange for him to be mentioning this without even having a MRI first..

All I can say is there are other types of injections and nerve blocks used first in combiniation with medications and other treatments....I can't see why he would not start with that first.

If you feel extremely comfortable with this Dr. and trust him completely then that is great. I'm just going on my personal experience with all the years I have dealt with spine issues.
Posted 3/13/2013 3:39 AM (GMT 0)
SRF,

Boy, you must be reeling! I kinda don't like the switching of all your meds in one fell swoop either, but then again, you're the one dealing with him...maybe he has good reasons.

I take Gabapentin for nerve pain, and aside from a little (more) drowsiness and dopiness, I like it.

Best of luck. I hope it all works out!

Debbie
Posted 3/13/2013 1:26 PM (GMT 0)
Well, the more I read, the more I digest, the less comfortable I become. I was fortunate to have scheduled a vacation at the end of this month so that is delaying the medication switch. So, I'm going to my regular neurologist for a second opinion and to get their instructions for the medications. I'm not totally against the meds. My neurologist has mentioned them before. But I want to go about it more slowly than the pain Dr instructecd.

Also, had some of my patients recommend this pain clinic. BUT, I have since found reviews for them and they weren't great. So, I'm not having anything injected into anywhere until I am comfortable with the whole thing. This is all just crazy!
Posted 3/13/2013 3:18 PM (GMT 0)
I have never seen a pain specialist but just the fact he doesn't believe that fibromyalgia is a true illness sets off alarms and red flags in my head.  I personally will not waste my time with doctors like this because they are not on the cutting edge of what is happening.  They are still in the Dark Ages when it comes to fibro. 

 

Fibromyalgia is now recognized by the American Medical Association, the American College of Rheumatology, the National Institutes of Health, and the World Health Organization.  You also see fibromyalgia discussed on the Mayo Clinic, Johns Hopkins, etc. sites.  They wouldn't post information if fibro didn't exist.  There are more health organizations but I can't remember them, too.  So, for this pain doctor to tell you he doesn't believe in fibromyalgia sure makes me wonder.......

 

I'm glad you are going to see your neurologist.  I do think this is the correct route to take since fibro is considered a neurological problem.

 

Sherrine

Posted 3/13/2013 3:38 PM (GMT 0)
I would be careful of pain management doctors. They are not necessarily the be all end all when it comes to dealing with this. My first turn off here, is that he doesn't believe in fibromyalgia??? Really?

Ok, you sound like a very smart person and I'm glad you are deciding to take it slow. It just concerns me that any doctor would immediately want to go in and change everything all at once. If you do have a bad reaction to something, how would you even know which medication is bothering you if you're taking a bunch of new ones all at once? How about going slow and trying one at a time before progressing with a new one?

How about ANY kind of surgery always being the absolutely LAST choice when everything else has been thoroughly exhausted?

My one and only pain management doctor experience left me with a bad taste in my mouth for these places. Mine was in the Schaumburg IL area, and I don't know where you live, but there are good and bad doctors out there everywhere, obviously.

The one I went to also wanted me to be eventually med-free- nice if that is possible, but is it really? He was very aggressive with his treatments also, and would have had me in there every day if I'd gone along. I was made to feel the pain was MY fault. He prescribed 45 minutes DAILY of hard - heart pumping aerobics. CAN YOU BELIEVE IT? When I physically was unable to do that, he guilted me about it. That's when I stopped seeing him, because even though he was a pain management doctor, he clearly had NO understanding of fibromyalgia and it's treatment.

I know all about exercise being helpful in fibromyalgia pain management, but how about gentle stretches, how about walking and how about being kind to ourselves on those days when we can't get out of bed. How about knowing that a day of hard exercise will more than likely bring on a flare up of pain?

Just sayin, just because this Dr. has a fancy title, don't go along blindly, which, it sounds as if you're not anyway, and that's good. Just continue to research and be careful, and by all means, second and third opinions are always a great idea as well. Good luck!
Posted 3/13/2013 4:05 PM (GMT 0)
I would actually suggest a Board Certifed Neurosurgeon (Fellowship trained) as well. They are the top of the top in knowledge and experience with the cervical spine.

I didn't comment before as I was focused on the procedure/surgery this Dr. suggested but I absolute agree that the other red flags are a Dr. not believing in Fibro. That just shows he is NOT up to date in his medical knowledge.

As well as the very concerning aspect of him just taking you off all your other meds abruptly and putting you on 4 new meds!!!

Most Drs. will start with one, MAYBE two medications at a time to give something a chance to see if it works as well as monitor the possible side effects. I mean, if a med works well, then why add something else until it's absolutely needed.

I absolutely ADORE my Board Certified PM who is also trained in Anethesiology and Family Medicine.

But he was not the one to diagnose my spine issues, that was my Neurosurgeon and then they work together to provide the best possible treatment plan for me.

So, I just strongly recommend you find a top Neurosurgeon to look over the MRI that you are going to get and see what they have to say. Try asking around people in your church (if you attend), on Facebook and any and all friends for a recommendation of one. That is how I found mine...

Keep us posted...
Posted 3/13/2013 4:34 PM (GMT 0)
Well, he said he didn't believe in fibro but what he "called" my ailments was this or that "algia" So, he called it something different.

Before I go on much further, I will say I think I am leaning towards not seeing him (PM Dr) but rather researching his recommendations with my regular neurologist (with whom I'm well estabolished and LOVE). In my research, his medication choices are good (except the BP medication - which I'm thinking I won't need when my pain is better managed) but his STOP this and START that technique is dangerous. Thankfully I'm smart enough to know that. His recommendations for exercise were good. Gives you a CD that he made, shows you gentle exercise and stretching techniques and tells you to take it slow. No more than 15 minutes a day. His supraorbital block relieved my headache which I had for the previous 12 days so that can't be all wrong. But I am putting on the breaks on the more indepth blocks he's talking about until I get more information. I'm going to get the opinion of my regular neurologist and I think I will seek out a board certified neurosergeon.

One thing I didn't like for sure (yet I understand it) is they drug test everyone initially and then on occassion while treating. This is to make sure you aren't abusing illegal drugs for pain and that you are taking the medication given as directed. I felt like I was put under a microscpoe without him even getting to know me. I'd like to be able to STOP my narcodic pain medication. Not get more. But, there are drug seekers that try I'm sure... I was listening to the guy in the room next to me, all but beg for more hydrocodone. He's the reason for the drug testing.

Maybe the whole reason for my visit was to get my attention turned towards my neck (which it's never been, didn't see the connection, but I can see it now after the PM dr showed me a text book and all the nerve pathways steming from the neck - it's highly possible my pain IS coming from there).

I'll keep everyone updated :-)! Thanks for all the info, everyone!
Posted 3/13/2013 6:13 PM (GMT 0)
Sounds like you have a good plan and are looking at everything in a very logical and SAFE manner:)

Just a note about the urine/drug testing. This is very standard these days for anyone seeing a PM Dr. or on any type of controlled substance (from a narcotic/opiate to certain benzodiazepines).

Each state has their own laws in regards to testing, pm contracts, pill counts, etc. and then each Dr. has their own decision on top of this.

My state started requiring them done at least once a year for everyone. I've been with my PM for close to 7 years now and he has to follow all the laws but thankfully because I don't have insurance, he covers the cost for the test once a year. He only uses the type that is sent out to a lab that uses Gas Chromatography/Mass Spectrometry. While it's quite expensive, it is 99% accurate as opposed to the in house "dip stick" ones. As well as even though I bring my pill bottles in for my once every 3 month Dr. appt., they never look at mine...LOL

So, it's not anything "personal" against you...it's just procedure. It's actually good in a way because it helps the Dr. find people who possibly have addiction issues and help them if they are ready, or weed out those who are just trying to "take advantage" and don't have real pain.

Again, it really sounds like you are on a good path and think things through which can only help in the long run:)

Keep us posted!
Posted 3/13/2013 6:34 PM (GMT 0)
I have orthopedic issues as well --three severely degenerative discs in my lower back and a pelvic lesion on my right side that also gives me pain. I have had two epidural blocks with little relief. I was also diagnosed w/ Fibromyalgia last year and have probably had it for the past 5 years. I have been to chiropractor, Physical Therapy and diff. meds (which I have side effects from). The only meds I take are Oxycodone 5mg and Lidoderm patches. I also have Flexerill if needed.
I have read books and articles on this site re: Fibro and I have many of the symptoms listed. Please don't let anyone tell you that Fibromyalgia is not a real diagnosis!! If any one of my doctors said that to me I would run the other way! They all believe that it is a "real" dx but know that it is very difficult to treat especially if you have side effects to many meds. Hang in there and lots of luck!!
Posted 3/14/2013 8:00 PM (GMT 0)
Well, I placed a call to the PM Dr. To ask some questions. I can't say it made me feel any better about the whole thing.

Well, 1 thing was a little better. The cervical plexus block, he said is very superficial so can't be the deep one. He doesn't use anesthesia other than a local. But still nervous about it.

I told him that I needed time to digest the medications he prescribed. And said I am very medication sensitive. I asked if he thought it would make sense for me to start one at a time to make sure I tolerate them. He did NOT agree. This made me nervous. He said "you are coming for pain management, aren't you? It's your choice but I don't recommend doing that. You won't get as fast of relief..." Well, I'm not too into rushing things when it comes to a medication overhaul. SOOOOOO glad to be seeing my neurologist tomorrow to get his opinion. Regardless, I'm not switching more than 1 at a time.

My gut tells me that it was a good thing to see the PM Dr to get our eyes open to the fact that my pain could be coming from my neck...I am fairly sure ill be sticking with my neurologist and letting him follow up on it.

I woke up with anxiety this morning and took a half of a Xanax. It went away and I was feeling fine until the PM Dr called me back. Need another zap of Xanax :-)!

I also don't like the fact that the PM Dr strips me of all my "as needed" meds.. Above and beyond the opioids. No Xanax, no phenergan. I said "I have trouble with my gallbladder, I'm being seen for it, but I still have days that I can't keep food down. Can I still use my phenergan?" He said no, just use ginger for nausea. WHAT? GINGER?? I am SOOOOO past ginger. If ginger worked, I never would have asked for phenergan.

Guess my long story short, I'm still getting bad vibes from him. Trust my gut, right??
Posted 3/14/2013 8:19 PM (GMT 0)
Right! I find that my gut reaction is usually spot on.

Sherrine
Posted 3/14/2013 8:23 PM (GMT 0)
Right!! If he were your only option, that would be one thing - but he's not. He may be brilliant in some ways, but maybe he should have gone into pure research. Human beings shouldn't be pushed and pulled at his whim. He sounds like you and your views and needs are a nuisance to him (sounds a little like my spine surgeon ;( Maybe he's cranky because he has stuff going on in his life, but that's not your problem.

My brother and his wife went to see a neurologist like that years ago. He switched all her meds (without even telling her!) and she was in a world of pain until they could straighten things out again. That dr-patient relationship didn't last, obviously.

Good for you for making up your own mind. Let us know how your appt goes tomorrow.

Debbie
Posted 3/14/2013 8:27 PM (GMT 0)
Well, at least that makes much more sense that it wasn't the deep CPB as that didn't make any sense for just cervical neck pain!

It's still definitely concerning that he is so black/white about things like the medication even when you call and have questions about it. And it doesn't make any sense that he has an issue with Phenegran as he is not "Dr. natural" with all the meds he prescribed.....If another Dr. is prescribing this for you then you should be allowed to continue this from them. The only med that may be an issue is the Xanax as this is a controlled medication that you just need to make sure the Dr. who prescribes it to you is ok to keep doing so.

Since you trust your Neurologist...it's good that you are going to wait and get their take on everything.

It took me awhile to find the PM and Neurosurgeon that I have now so yes, go with your gut feeling! It's your body, your time, and your money!
Posted 3/14/2013 8:45 PM (GMT 0)
Yah, my neurologist has learned to trust me. He's learned that I really don't like popping pills and I definitely don't have an addictive personality. When I complained of my anxiety, they knew it was more than just a "bout of nerves" and on rare occasions, requires Xanax to get to the point where I'm not wasting hours suffering and rocking on my "comfy couch". I can sometimes go a month and not take it, sometimes I have to take it 3 times in a week. I had my script filled back in December. It was for 30 tablets. I've got WAY more than half left. Sometimes just knowing the option is there IF I need it, makes it easier to get though without it, ya know??

I'll definitely post after my visit tomorrow.
Posted 3/17/2013 5:23 PM (GMT 0)
Hi, I know its a little late, but to throw my two cents in...
I took Naprolean (sp?) a while back for a neck injury, and the orthopaedist told me not to take any ibuprofen or naprosyn while on it, as it was a "longer and stronger" ER NSAID. He also said he didnt reccommend taking it longer than a week or two either, as it can cause the usual "stomach" issues, but for a short, strong blast of help it was a good one.

FYI, and take care.
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