Pain specialist? help!

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Lukasmed92
New Member


Date Joined Jun 2011
Total Posts : 6
   Posted 6/23/2011 1:40 AM (GMT -6)   
Hi, my name is Lukas, I am 18 years old (19 in September) and have an unusual case of neuromuscular pain that I've suffered from since I was 10 years old, but all of the doctors I've seen say that my condition could most likely be fibromyalgia or some type of chronic neuromuscular pain, but are still perplexed at my condition. I've already seen a Rheumatologist although the pain is not in the joints, just the muscles.
 
I have also seen my family practitioner. The pain has always affected my quality of life, I dread doing simple housework and daily activities. I feel like I can't enjoy life to it's full potential and nothing is fun. After many failed therapies and medicines such as Tramadol, Diclofenac, most NSAIDs, anti-depressants (Cymbalta, Zoloft), Lyrica, steroid injections (Kenalog, Depo Medrol), and Skelaxin, I believe it's time to see a pain specialist, someone who know what they're talking about when it comes to pain.
 
I tried some of my left over hydrocodone from my wisdom teeth extraction, and its the only thing that has helped, and I didn't notice any bad side effects like many people say. I think it would also be a good idea to see a pain doctor along with physical therapy like massage, etc.. I know I can get relief, I just need to find the right doctor. What do you think I should do? Should I go to a pain management doctor? Do I need a referral? If so, how do I obtain one?
 
There is a lot of controversy on pain medications like opioids because of all the drug seekers out there, but they are the only ones that seem to work for me and I just want relief. If only they were prescribed more freely, many people who are suffering from chronic pain can get the relief they really need. What are common long-term pain killers recommended for chronic pain? It's a shame that I have to suffer at such a young age as mine.


Thank you,
Lukas
 
 
(Edited for easier reading) Thanks! SE

Post Edited By Moderator (Screaming Eagle) : 6/23/2011 8:15:45 AM (GMT-6)


Lukasmed92
New Member


Date Joined Jun 2011
Total Posts : 6
   Posted 6/23/2011 1:42 AM (GMT -6)   
Oh, and I'd like to add that I've also tried the Lidoderm (Lidocaine) patch which was not effective.

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/23/2011 3:46 AM (GMT -6)   
Lukas...
 
I'm an insomniac.... so it's 1:20am here - so my thoughts may be jumbled up so bear w/ me :)  First things first, welcome to our board.  There are so many wonderful, supportive, knowledgable people here.... and I hope you'll find that true as you get to know us.  I'm sorry, though, that chronic pain brings you here.
 
I also hate to hear of you being so young and dealing w/ all of this.  You are only 2 years older than my oldest son - and I just can't imagine. 
 
Without giving you all my boring details right now.... I will tell you that I first got ill at age 19.  I hate a severe reaction to the Hep B vaccine in nursing school.  I was bedridden for almost a year.  Looking back, I probably had fibromyalgia at that point.... but I was also diagnosed w/ chronic fatigue syndrome - given that I met all the criteria.  After about a year in bed - I finally got better slowly... and was able to resume life... go on to have a huge family.... until all my health issues reared their ugly head again - this time, in a HUGE way.  I ended up finding more and more things wrong w/ my health - including a heart condition, dysautonomia and all my wonderful pain issues (not).  I'm now 38. 
 
I say all that to let you know that I do understand what it's like to be so young.... just  starting out.... and to be so ill.  Frankly put - it sucks.
 
Well, it seems like you've tried many things already.  But in answer to your question - do I think you should see a pain management doc?  My answer would be YES... 100%.  There are so many things that a good PM doc can try.  Medications, of course.  But there are nerve blocks, trigger point injections, massage therapy and on down the line.
 
The truth be told - many people w/ chronic pain need narcotic pain medications.  There is always going to be some level of controversy re: pain meds - because, yes, there are also going to be drug seekers.  However, you need not to worry about that.  You are looking for meds to help your quality of life - not to use recreationally! 
 
Most PM offices do need a referral to see you (not all, but most).  Do you have a primary doctor?  They can give you a referral, as well as your rheumy, etc.  I would look into what PM docs there are in your area.... look them up on the web and see if you can find any information out about them. 
 
Re: your questions re: meds - I *could* list the medications that are out there.... but it's really to hard to say what your doctor will suggest to you.... what meds you would respond best to... and so forth. 
 
If you haven't been on many narcotics, your doctor might start you on something on the lower end of the scale -- vicodin, percocets, etc.  From there - there is long-lasting morphine, oxycontin, methadone, etc.  More of the stronger meds are dilaudid and fentanyl (either in patch form or oral form). 
 
Most of here, though, are not just on narcotics... many of us here have a pain *cocktail* of sorts that helps us.  For instance, I'm on narcotics... a muscle relaxer.... a nerve medication... and an anti-depressant.  (and these are just my pain meds!!). 
 
Even with my meds being very stable - and having some very strong narcotics on board.... I still average about a 6 to 7 on the pain scale most days.  But this is a functional level for me.  For so long - I was at a  8 or 9.  I don't want to go to low - because I don't want to build such a tolerance to my meds - that I have no where to go.  Does that make sense??
Well, I've written WAY too much.  Sorry for rambling on.... but it's late and my mind is going and going and going!!  I hope I've given you a few things to think about.  Please feel free to ask ANY more questions... or anything at all. 
 
I really hope and pray you can find a good PM doc that will help you find something that works for you - so that it can improve your quality of life.  You may need to be patient - because it can be such a trial and error type thing.... but I hope you can get started in trying to find something that works!

Good luck to you Lukas - and I really wish you the best and hope to get to know you better :) 
 
--Tina
 
 
Pain Issues: DDD; fibromyalgia; migraines; carpal tunnel syndrome; tendonitis
Multiple Health Issues: Disabled due to POTS (heart condition); dysautonomia (dysfunction of the nervous system); hypothyroidism; adrenal insufficiency; chronic hypertension; chronic fatigue; sleep apnea; anemia; Vitamin D deficiency; etc etc
Meds: Too many to list....
Personal: Mom to 6 boys and twins girls

Lukasmed92
New Member


Date Joined Jun 2011
Total Posts : 6
   Posted 6/23/2011 4:15 AM (GMT -6)   
Thank you so much Tina, I appreciate it!! I can't go to sleep haha

Well, I kinda have 2 primary doctors, my mother and Dr. Jefferies. I asked Jefferies for a referral to a pain doc but he said that he doesn't want to give me one because they like to prescribe narcotics... I can ask my mom but the thing is that she can't prescribe controlled substances anymore because she let her DEA license expire. So, if I go to a pain clinic with her referral, does the pain doc prescribe the meds or does the referring physician? How can I convince my Rheumy or Dr. Jefferies to give me a referral?

Thanks again

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 6/23/2011 4:37 AM (GMT -6)   
Hi Lukas, and welcome. I'm sorry too that you're having to deal with this at such a young age. I'm 26, and I've had a disease called Complex Regional Pain Syndrome since I was 14.

A pain management specialist definitely sounds like the go. With regards to your mom - I think even if she was in a position to prescribe you narcotics, that would be a situation best avoided, just so that there is no question of her ever being compromised. I can't see that there is any issue with her writing you a referral to a pain management clinic though, provided that the PM doctor is the one prescribing and managing any medication you go onto.

All the best - please do stay with us and let us know how you go :)

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Lukasmed92
New Member


Date Joined Jun 2011
Total Posts : 6
   Posted 6/23/2011 4:41 AM (GMT -6)   
Thanks Laura! I'll keep the post updated...

Betsey Ross
Veteran Member


Date Joined Mar 2011
Total Posts : 1056
   Posted 6/23/2011 5:07 AM (GMT -6)   
Hi Lukas

Welcome to our forum. I am so sorry that your having pain at such a young age.

Ask your PCP about him giving you a pain clinic referral.
Once you get the referral it might take over
a month to get an appt with PM doc.

Good Luck

Betsey
crushed lower knee and vertical fx of yibia/external fixator placed/plates and screws and tried to place big pieces of cartiledge under knee cap/tremendous pain in affected legcontinously without improving/allergic to metal in left leg/leg isnt straight/need metal removed in July/wait 6 months for healing/then toatal knee replacement/straighten out leg/more phsyxical therapy/take opana er

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/23/2011 8:57 AM (GMT -6)   
Lukas....
 
My babies woke me up at 6am... not fun when you've only slept about 3 hours!!  Hope you ended up getting some sleep.
 
Anyway, if you get a referral (which could be via your PCP or your mom or Rheumy - it really doesn't matter) - the PM is the doctor that usually, in most instances, takes over rxing your pain meds.
 
I know others have different experiences - but having lived in 2 different states and have seen many, many different PM docs - most DO prescribe narcotic meds.  That's ONE of the reasons for going to a PM.  Of course, there are the other modalities that we've already discussed.... but, again, it seems like you've tried many of those already. 
 
Ok, babies attacking the computer - so I must go.  But I wish you every bit of luck - and hope you'll stick around and let us know how you are doing.  Work on getting that referral - I really do think it will help you.
 
Hang in there, Lukas.... Many thoughts and prayers --Tina

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 6/23/2011 9:00 AM (GMT -6)   
Hi there....welcome to HW...

I'm sorry that you are having chronic pain..and at a young age..:(...

I will offer a few suggestions as well as you have gotten good advice from others already...

I think it's going to be crucial to get an actual diagnosis first..If it is Fibromyalgia....then a Rheumatologist is the one to do this...So if that didn't happen with the Rheumy you saw before, I would make an appt. with another one so you can make sure they rule out all other things...

As well as with Fibromyalgia being a nerve pain issue...trying another nerve pain medicine....How long did you stay on the Cymbalta or the Lyrica? It usually takes about a month or so and starting with low doses, and then tirating up...Have you tried Neurontin? This also starts low and goes all the way up to 1800mg a day for some people to be effective...

With Fibro, it is usually treated with a combination of different things...so not just one medicine...or modality...and exercise is a very important part of the puzzle to try and get in each day...as yoga/stretching...and yes...massage and learning some good PT 'moves'...acupuncture, injections, aqua therapy, an antidepressant, and counseling on how to live our lives with chronic pain..eating healthy and not smoking is also important...

For me...when I actually went on Ambien after my last fusion surgery...I started getting stage 4 sleep...and this dramatically reduced my Fibro symptoms by 80%...I had no more fatigue...and my immune system was able to 'repair' itself each night...So some Dr.s who treat Fibro are moving towards the sleep issue as one of the strong components in treating it.

I have to warn you though that taking any 'leftover' medication is not a good idea at all....if/when you see a Pain Mgmt. Dr....many these days have a urine test as part of the contract they have you sign...To have medication in your system that isn't prescribed for you at this time can cause you to have a red flag in your file, dismiss you from their practice and then wouldn't be treated with any opiates down the line from any Dr....

I know you are hurting...we truly can empathize with you here...I just want to help you get the best care you can..

Just as we search for a good and trusted Dr....our Dr. needs to trust us and know that we can follow all instructions with our medicine, and not 'self medicate'...

So...I think getting a firm diagnosis is crucial...then when you see a PM Dr. they can see what you are dealing with and get a treatment plan in place for you working together with the Rheumatologist....Just know that opiates, if used for Fibro, are a very small piece of the puzzle..it's used in conjunction with a nerve pain medicine and/or a muscle relaxer...

I hope that you can find another Rheumy soon...and then a good PM who will work on helping you find a way to manage the pain...

Take care...keep us posted...
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
 
 

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16796
   Posted 6/23/2011 3:40 PM (GMT -6)   
Hi Lukasmed and welcome to Healing Well's chronic pain forum. I am sorry that you have to be here but very glad that you found us. I really hate seeing anyone suffer with pain but young people just should not be having to deal with this sort of thing. They should be out there living life not having this mess going on. As you can see from the responses so far we do have an understanding group of people here that have one thing in common CP.

I do hope that you are able to find a good pain mgt dr to see if he/she can help you out. Do you have health insurance? if so, usually you can find your company online and go there to look and see what PM drs are listed that you can see that are covered by your insurance. I do hope you have insurance because PM drs are very expensive. Besides medication if they feel it is warranted, they can recommend PT and they also do different types of injections and procedures to try and reduce the pain. I cannot remember which one of these meds you said you tried but how long were you on it and did your dr increase your dosage slowly to get the best effect?

As one of the members said PM drs usually do require a referral from another physician. If you are able to get into a pain clinic they have very strict guidelines that we have to abide by otherwise they kick you to the curb and notes are put in your chart and then other drs will not want to see you. Random drug testing, pill counts, use one drug store only, not get pain medication from any other dr are some of the things the PM drs require and this is all put in writing on what is called a Contract that you must sign and agree to. With so much hype on drug abuse it really makes it hard for people that truly need help.

I do hope you are able to get some help real soon. Please keep us posted on how you are coming along. Again, welcome aboard. Take care.

From the statement that your PCP made about PM drs giving narcotics I can see he is not going to offer you any type of pain medication because of your age. That is something we see all the time, someone as young as you, the drs will not rx pain medications. If you have true nerve pain, regular pain medication has very little effect on nerve pain. Nerve pain responds better to the medications that are used to treat it. I have seen someone on here in the past that was on two different types of nerve pain medication and they were having good success and I cannot remember which of the two they were on, I wish i could.
Moderator Chronic Pain Forum

Lukasmed92
New Member


Date Joined Jun 2011
Total Posts : 6
   Posted 6/23/2011 4:21 PM (GMT -6)   
Thank you everyone! I am researching pain specialists (I live in Houston, TX btw) and will ask my mom if she can be the referring physician. As far as anti-depressants go, I usually have bad reactions to them like nausea, etc. The only medication that really worked was Tramadol, which is a Codeine analog that acts upon opioid receptors. Unfortunately, Tramadol is a weird drug that gave me weird side effects like racing heart. I have tried some of the more traditional narcotics like percocet and vicodin which were prescribed to me in the past for wisdom teeth extraction, etc., and they seem to work so well. When it comes to weaning off medication, I tend to have no trouble at all. I had to wean off tramadol (because of the side effects) and it was surprisingly easy. I had the same situation with Zoloft as well.

Lukasmed92
New Member


Date Joined Jun 2011
Total Posts : 6
   Posted 6/23/2011 4:23 PM (GMT -6)   
anybody live in the Houston area that knows of a good pain specialist?

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 6/23/2011 4:42 PM (GMT -6)   
Just fyi for you and others new to PM...But Tramadol...which is the actual active ingredient in the brand name pill, Ultram.....does not have an relation to codeine....It does not contain it nor is it a similar medicine...

So..I know a lot of people have nausea with codeine...which is the main ingredient in Tylenol 3...

I'm not sure if it's a good idea that your mom is the one to 'refer' you to the PM...Unless you are actually a patient of hers for some time at whatever practice she works in as a Dr....

I would find a different route of getting a referral..

Again...Once you get an appt. with a PM...they are going to want to try different modalities to treat your pain...so don't be suprised if they don't start you on any type of narcotic to begin with.....chronic pain management is not just about getting an opiate and then being done....as well as with your age...yes...they are going to want to be as conservative as possible in case this is a long term issue...As well as any type of medicine is not meant to 'take away' the pain...Most of us in chronic pain live with a 5 on a pain scale...and that is with numerous modalities used each day/week/month to help our pain..

So in my opinion...as I mentioned...getting an actual diagnosis from a Rheumatologist or other Dr. first should be your goal so you know exactly what is causing your pain, and then looking at all the various treatments to manage it...

Your mom can be a good help with her knowledge as a Dr.....as well as other colleagues that may know a good Rheumatologist to go to, as well as a good PM Dr.
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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