New Here/Having Problems Managing Pain

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Regular Member

Date Joined Mar 2011
Total Posts : 53
   Posted 3/15/2011 9:45 AM (GMT -6)   
I've been reading the forum for several days and decided to see if I could get some advice. I'm 39 have been diagnosed with Fibromyalgia, Scoliosis, Degenerative Disk Disease, and Celiac Disease. Am trying to get SSDI, in the appeals process now - been waiting since Oct. 2009. I have no health insurance and as of yet do not qualify for Medicaid. So any dr visits come out of my pocket. Obviously I'm not able to work and husband lost job back in August. So money is tight. My gp has been good at letting me pay out my visits. Last time I went he prescribed Cymbalta for fibromyalgia and depression, Tramadol for pain, Hydrocodone for pain. The Cymbalta is working (somewhat), the Tramadol not so much, the Hydrocodone works wonders. On my last visit about 4 weeks ago, he told me to try this mix of meds for 3 months and if it wasn't working he would increase the Hydrocodone so that I could take at least 3 a day. I've tried this mix for a month now, and its not helping. I called his office and asked if I could go ahead and get more hydrocodone for the breakthrough pain. They called this am and said no. He now wants me to go to a PM dr. Which I'm willing to do, but how am I supposed to pay for it?????  I've been taking the hydrocodone since May of 09. I only receive enough pills for 2 a day. They are 5/325. Its not like I take 5 or 6 a day and am asking for more. I would just love to have one day without pain. And not have to decide if I'm going to be pain free only in the morning or wait until the evening. 
Since I'm in the process of disability I don't want it to look like I'm doctor shopping right now. I'm don't know what to do and any advice would be greatly appreciated. Thanks for your time.

Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 3/15/2011 9:59 AM (GMT -6)   
Welcome... I'm glad you've been reading and glad you posted. 
Hmmm, your situation is a tough one.  I agree with you completely - 2 hydrocodone a day is very minimal, for chronic pain.  If you are suffering increased pain - I think it's crazy your doctor would make you wait 3 months to increase it by simply one pill.  It doesn't sound like this doctor is well-versed in pain management, or is incredibly reluctant to prescribe narcotics.  Either way, I don't know how much progress you'll make w/ him.
The only things I can think of are: A) going ahead and getting the referral to a PM doctor, and explain your financial situation w/ the new office - and see if they'll work with you.  B) going to another primary doctor for a "second opinion" type thing; seeing if he/she would be more willing to work with you - from the financial perspective AND re: the medication.  If so, switch your care to that person.  That wouldn't be "doctor shopping" long as you transfer your records, let your other doctor know you are switching and so forth... or, finally, C) going to your doctor and basically putting everything on the table - that you would love to see a PM doc right now, but cannot afford it...yet, you need a better quality of life and 2 hydrocodone is not working.  I would also say what you said here - that you have to choose whether to be miserable during the day or at night. 
Maybe some others will have some other ideas... I really hope you can figure something out so that you can get better pain control.  Let us know how you are doing...  Hang in there.
Main Health Issues: Dysautonomia/POTS; CFS/Fibro; Chronic Pain (back issues, migraines, carpal tunnel, among other things); Chronic Hypertension; Hypothyroidism and Hypoadrenalism; Mixed Sleep Apnea (on BiPap); Depression/Anxiety; Vitamin D Deficiency.

Regular Member

Date Joined Mar 2011
Total Posts : 53
   Posted 3/15/2011 10:21 AM (GMT -6)   
Thanks for your advice. I do know that the dr is very hesitant to prescribe narcotics. The nurse told me he had a bad experience in the past from a patient. But what frustrates me about that is, I'm not that patient. He been prescribing this medication for me for 2 years and I haven't abused it in all that time. And now that I'm still not getting relief he won't prescribe more.  What I'm afraid will happen is that I try to find another dr and they won't prescribe it at all. And then I'm really going to be miserable.  I guess I have no choice but to do what he has suggested and see what happens. I'll keep everyone posted.

Veteran Member

Date Joined Jul 2009
Total Posts : 2042
   Posted 3/15/2011 10:44 AM (GMT -6)   
How long have you been on Cymbalta and at what dose?

If you are currently taking less than 120 mg of Cymbalta per day talk to your doctor about increasing your dose by 30 mg/day. I take Cymbalta for diabetic neuropathy pain and for me 30 mg/day barely puts a dent in it, 60 mg/day works fair and 90/mg day works wonders.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 3/15/2011 10:54 AM (GMT -6)   
J -
I understand what you are saying...especially when you've seen him for 2+ years and have properly taken your meds and all that.  Unfortunately, it's a common thing to happen - for a doctor to have a bad experience w/ giving someone narcotics...and then it reflects onto anyone else who needs meds.
I'm sorry!  Maybe someone else will have some offer suggestions.  Hang in there...
Main Health Issues: Dysautonomia/POTS; CFS/Fibro; Chronic Pain (back issues, migraines, carpal tunnel, among other things); Chronic Hypertension; Hypothyroidism and Hypoadrenalism; Mixed Sleep Apnea (on BiPap); Depression/Anxiety; Vitamin D Deficiency.

Regular Member

Date Joined Mar 2011
Total Posts : 53
   Posted 3/15/2011 10:56 AM (GMT -6)   
I just started Cymbalta about a month ago. I take 30mg a day. The fibro pain seems to be doing better. I have occasional flare ups. Its the back pain that I'm having so much trouble with. I feel like I have a knife in the middle of my back all the time. The pain meds dull the pain. But that only lasts about 2-4 hours. I spend most of my day sitting on the heating pad with my feet up.
The dr gave me samples for the cymbalta. I have no insurance or medicaid, so after my samples are gone (which is in about 2 more weeks) I will have to find a way to pay for it out of pocket. I'm trying to get assistance in paying for it, but no success with that yet. I don't know if going up in the dose would help with the back pain or not. I guess I could ask the dr.

Tomas K.
New Member

Date Joined Mar 2011
Total Posts : 4
   Posted 3/15/2011 11:12 AM (GMT -6)   
Perhaps you should be prescribed amitripylin. This is an antidepressant as well as muscle relaxer and is only $4.00 at Walmart uness they've gone up recently.

I use it at night "will make you sleep but side effects for me are uncontrolled leg spams" before bedtime for Fibromyalgia.

Regular Member

Date Joined Mar 2011
Total Posts : 53
   Posted 3/15/2011 11:31 AM (GMT -6)   
I've tried amytriptolene in the past. It didn't seem to do much for the pain. It did help me sleep though. Its just so frustrating to not have the dr understand the amount of pain and the financial situation that I'm in. I feel like my hands are tied. Hopefully the PM dr that I need to call will be understanding and can give me some relief.

Screaming Eagle
Veteran Member

Date Joined Sep 2009
Total Posts : 5005
   Posted 3/15/2011 5:56 PM (GMT -6)   
Hello Joy!

Welcome to the CP forum!

I have been running behind here on the forum, but wanted to welcome you here. We have wonderful members as you can see. wink

Please take a peek at the Chronic Pain 101 at the top of the forum. It is good reading, and I'm sure you will find some helpful information there.

SE wink

Regular Member

Date Joined Feb 2011
Total Posts : 58
   Posted 3/15/2011 8:46 PM (GMT -6)   
(((Welcome Tina)))
I am fairly new here as well! I believe that there are some drug manufacturers that will assist you in getting your meds. You might want to google it and see what kind of help you can get. We have services here in MO that assist people without insurance. It's called Crider ... I think. Check in to it. My sister goes there because she has the same problems and she pays like $10 for an office visit and her meds are something like $2. Good luck... I hope that you can get some assistance and some relief from your pain!

Regular Member

Date Joined Mar 2011
Total Posts : 53
   Posted 3/15/2011 8:59 PM (GMT -6)   
I live in MO also. I will check into that. There is Access Family here that uses a pay scale so you pay according to your income. I'm just afraid of going to one of those places and them not being willing to give the medication that helps. But I guess all I can do is try huh???
I appreciate everyones responses. I've enjoyed reading all the posts on this site. I have learned some very interesting things from all of your experiences. I makes me feel better knowing that the symptoms/pain that I have are not just in my head. There are so many people on here that have things similar to me. I will definitely keep posting and reading.
Fibromyalgia, Degenerative Disk Disease, Scoliosis, Celiac Disease

Rev 21:3,4: "God will be with them. And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away."

Veteran Member

Date Joined Apr 2010
Total Posts : 2265
   Posted 3/16/2011 2:18 AM (GMT -6)   
Hi Joy Boy you're going thru a lot. Welcome to the forum. As you can see we have a lot of caring and wonderful people here. I know there are places you can find on the internet that will help you get your meds. There is a list in the CP 101 at the top of the main page. it would be worth your while i think to look at that list. That will give you some good ideas. In fact the whole cp101 is some really good information. I hope you can get a referral to a PM dr. and get help with the pain you are experiencing. I don't have the fibromyalgia, but I do have the degenerative disc disease. I also know the pain from Chronic Pain. I wish you good luck. Take care.

Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees

Veteran Member

Date Joined Jun 2008
Total Posts : 6706
   Posted 3/16/2011 3:07 AM (GMT -6)   
Hi Joy Boy and welcome to the forum.
You are in that state of limbo so many of us float in between losing our shirts and waiting for SSD to get around to us and thats a nother discussion but there are some ways to expediate getting a hearing,you might check out Petes SSD thread as it has some of those there.
You might be in a state that has such a thing as a spend down card thru your medicaid office that is just for these kinds of things. Your allowed a certain amount of medicaid for a certain amount of time based on the need for unforseen care your requiring.
Like stated its not Doc shopping if your only consulting and that means up until which time you actually take a script for opiates from a Doc other then your prescribing Doc without his knowledge,in other words if you find one that is willing to help you more notify your old Doc immediately that you thank him for his care but his services are no longer needed. Request a transfer of your records and do all of this in writing keeping copies. Then your free to see whomever.
Try PM Docs associated with medical schools as these are generally funded better to care for the indigent and fees are income based and even if you have to drive a bit to see one the savings are worth it.
Shop around for a pharmacy discount card and alot of these can be obtained for little or no costs and can save half of your costs. The bigger chain pharms all have them and are found to be helpful. I use one that gives me more then half off the 2 meds not covered by my medicare drug plan and couldnt get those at all if I didnt have it.
Sadly to say many many GPs will not adequately treat pain with opiates since all the stigma associated with doing so. Some will and you might be able to find one. I dont know where you live in MO but I had a very good one at a "quick care" in Tulsa for 2 years out there with my son going to school. It was about $50 a visit but hey thats not too bad considering the alternatives.
Good luck to you and hoping you find someone to help you alittle more and hoping you get that hearing real soon.

Veteran Member

Date Joined Dec 2007
Total Posts : 1235
   Posted 3/16/2011 10:43 PM (GMT -6)   
Hi and welcome,
I just wanted to clarify something, most GP's will treat instances of acute pain, for a short period of time, but they are not schooled in treating chronic pain and all of the nuances that go hand in hand in treating multiple symptoms of various conditions. It's not their job. If a GP does prescribe pain medications for chronic conditions, they are doing us the favor, saving us the expense and the extra visit with another doctor. Even then, the options are usually limited to using short acting medications, which in the long term won't work when treating chronic conditions.
Fibromyalgia has been shown to be best treated with using medications like cymbalta, lyrica, neurontin and others in the same category. Short term use of opiates are best restricted for flares of the pain levels, but not for daily use. Now, this isn't true in all cases, but in many of the studies coming out , neuropathic meds are the gold standard when it comes to treating fibro flares.
Cymbalta is also approved for back pain as well, since it works well for treating neuropathic pain. The poster is at a starting dose of Cymbalta, and I think the recommended dose is around 60-90 mg , so she has a long way to go in increasing that medication to see if it helps more as she goes up in dose.
Hydrocodone is a short acting pain medication, as she knows, and taking it regularly daily, for two years, it's not a suprise that it isn't working so well anymore and not lasting as long as it once did. That will happen again, even if the GP were to go up to 3 times a day or more for that matter. Visiting a PM doctor who can make some recommendations back to her GP for possibly a long acting medication as her baseline pain med and maybe adding hydrocodone back as a breakthrough medication for the times when the base med isn't relieving the flares would be a good idea , and if she visits the PM and he makes those type of recommendations, it is possible the GP might be more comfortable prescribing her meds from that point on.
Anyway, I would do as the GP suggested. Try increasing the cymbalta for the three months and then in the meantime, visit with a PM doctor in your area for a consult. See what they recommend and then talk to your GP and see what he is comfortable doing as far as the medications go. Best of luck to you,

Regular Member

Date Joined Jan 2011
Total Posts : 230
   Posted 3/17/2011 1:01 AM (GMT -6)   
Hi Joy, and welcome to the family!
So many people have offered wonderful words of wisdom and great suggestions. I'm merely glad you found this place as sometimes the one thing a doctor can't give you is the emotional support those of us with chronic pain so desperately need; someone to talk to, who understands what we're dealing with.
From some of the people I know with Fibro they all agree that Lyrica is one of the best meds out there. It takes awhile to build up in your system, but is definately worth it. Celebrex is another one. If you can rely more on the tramadol then the hydrocodone, you're better off. Believe me, I've been on narcotics for over three years, generally four times a day. One of the things I found was that every year or two my pain management doc had to switch what I was taking. At first he'd start by increasing the doseage; like he upped my percoset from 10mg, to 15mg, but tried to get me to cut back to only 3 pills a day instead of 4. This worked for a very short time before I found myself back to needing 4 a day as my bad days started to out-number my good ones. Before that he had me on loritab, and about every six months as my pain increased (and my tolerance to the meds) we'd have to up the doseage. Before loritab, there was vicoden. So you can see what happens. Another thing you can discuss as a possible option is extended release meds.
You mentioned that you had tried to apply for Medicaid; was that before your husband lost his job? If so, go and try to reapply again, or at the very least have your file updated to reflect your current income status. I'm not sure if it'll work, but it's worth a try. I found when I was getting unemployment the state considered it to be "to much income" to qualify for Medicaid, but as soon as my unemployment ran out, they had no problem approving me for it. The bad thing was as soon as my SSD was approved they cut off my Medicaid, was I was back to "to much income", however because of the way SSD works I didn't get my Medicare for another 10 months.
I understand the fears of doctor hopping, or shopping around, and certainly with something like Fibro a pain management doctor will be your best bet for getting your pain under control and on a good progam medication-wise. Just remember some meds do take time to build up a continual level and work effectively.
I wish you the best of luck, and make sure you keep us all up to date on how things are going, or even post just to vent, get things off your chest, and remember that you're not alone, that eventually this rough time will pass and things will get better. *hugs*
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Spent next year seeing specialist after specialist; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 I was finally diagnosed CRPS - Stage 2
Permanently disabled, on Percoset.
February 2011 successful SCSU trial
No surgeon willing to do my SCSU Implant
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