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narcotic pain relief for fibro

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Posted 7/4/2009 4:43 AM (GMT 0)

Hi everyone!

I am sure this topic has been covered by my search did not seem to find what I was looking for.  I am in a tough spot.  I am at the max daily dose of Ultram, which used to work very well but does not anymore (tolerance, I guess).  I have to work a full time job to support myself, so must have something to control pain or I would not be able to work. I also take Soma 4x a day and supplement with tylenol (which is more of a placebo that anything else).  Advil or Alleve are uselss.

My fibro doc will not prescribe narcotic pain relievers, so he sent me to a pain management certer (PMC) at the local hospital, thinking the PMC might prescribe a narcotic.  Well, the PMC does not do that until they have tried everything they can to relieve pain and if nothing helps they will pass a recomendation to my doc to prescribe a narcotic.  That could take months.  These PMC docs are anesthesiologists   And they are guessing just as much as all other docs as far as what will help.  It is trial and error.  And they have said (as I know to be true), that anything they do will only offer temporary relief.

So I don't know where to turn.  I absolutely have to work, and as it is I am really struggling to get myself out of bed and to the officce and really struggling to make it through each day.  I have developed major depression and started seeing a therapist but am super senstive to SSRIs and SNRIs.  I cannot tolerate them.  I am told the depression is making the pain worse and I tend to believe that.  He tried me on Buspar which was just as bad as  an SSRI.  So short term (last week) he put me on klonopin because symptoms from Buspar were pointing to seratonin syndrome.  I am not sure which is worse, my anxiety or depression, but after just a few days I am feeling more myself with the klonopin (aside from pain) than I have in a long time.  I know anxiety and depression are linked, so it makes sense that treating the anixety is helping with the depression.

Anyway, after all that discussion, I'd like to know if there are folks out there that use narcotic pain relievers for fibro.  I am not sure I can keep working another few months while the PMC uses me as a pincushion to try to temporarily relieve pain.  I fully understand the down side of narcotics, but I don't know what else to do.  I do a lot of non-medication types of  things to try to relieve my pain and nothing is working anymore.  At the rate I am going with time off from work I am afraid I am on the list for the next round of  layoffs (in the aerospace industry another round is inevitable).  I am approved for FMLA time but my bet is that won't matter in the long run.  I already work from home 2 days a week.  Asked for 1 more day at home and was refused.  I disclosed my fibro as a disability but apparently working from home more than 2 days a week was not a "reasonable accomodation".  It would help a lot since I have a 50 miles commute, but my employer does not see it that way.

I am at the end of my rope and would just like to hear from others regarding narcotic pain  rellievers.  If I have to I will switch doctors, but I know that is a long hard search, too, and most docs do not like to prescribe narcotic pain relievers for chronic pain.  And yes, I have tried Lyrica but the side effects were too bad to continue it.

Looking forward to hearing from others!

Rose

Posted 7/4/2009 5:03 AM (GMT 0)
:-) Hi Rose! I take a very minimal dose of percocet -- I am Rx'd for 3 per day, but my prescription is only for 45 tablets. My doc would give me more, but Indian Health does not approve. In fact, she has to give me an outside Rx for the percocet even though it does go into my medical chart at the Indian hospital. Thank goodness my medicare has now kicked in or I could not afford even the 45 pills!!! I take them only when the pain is truly horrendous, but I limit myself to only the 1 1/2 per day, taken 1/2 at a time. When I don't need them, I save up the few extras for those days when I simply cannot get by on the regular amount. I don't take the darvocet during the day usually, but I do take one at bedtime because they make me sleepy. tongue I am really grateful for the percocet -- I truly don't know if I could stand it without them. I know lots of fibrofolks don't take them, but for me they are a godsend........
Don't know if this helps you at all, but IMHO if you are extremely careful with them, narcotics can help. yeah
soft (((hugs))) to you
Shash
Posted 7/4/2009 6:03 AM (GMT 0)
I can't help at all with the pain relief questions.  But I can sure relate to the whole rest of your post.

I also work in the aerospace industry and undertand your situation completely.  A couple of questions.  Do you belong to a union?  Do you have short term and long term disability thru your employer?

I kept going just like you're doing - developed anxiety and major depression (I have a chronic infection rather than fibro).  I didn't expect to reach my limit where I did.  Basically, I crashed and ended up psych in-patient.  So I know how you feel about having to keep working.  But our job performance and good rep are also things we've worked for.  There comes a time when we need the FMLA to regroup.  During FMLA you have job protections.  If you transition into short term disability, you may well have options to phase back into work gradually.  It's one of those things - maybe you can't afford not to do it. 

With the major depression, you may find when you've hit your limit that it's more like falling off of a cliff than continuing to slide down hill.  If your thoughts turn dark - please talk to your primary care or therapist and tell them you need help.  They will help you with it.  I'm so glad I did.

Also, I started having mood swings with the SSRI type med.  There are other things that work.  In my particular case Lamictal has worked for my treatment resistant depression.  Hopefully you'll find a med that works for the depression. 

I understand the layoff worries.  When it comes time to go back to work (on long term now and not that close), I also have concerns about being reclassified and added to the lay off list.  I'll just have to worry about it when I get there.  Actually, my LTD carrier contracted with another company to put me in for SSD.  The future looks very uncertain for us.

Maybe it would help to talk to your HR and unrion reps?  I was pretty far along before I talked to them but they were very understanding and helpful.  Wish I'd talked to them earlier.

Please keep us posted on how it's going.

 

Posted 7/4/2009 10:59 AM (GMT 0)
I thought Ultram was a narcotic?
Posted 7/4/2009 3:30 PM (GMT 0)

Ultram isn't considered a narcotic but many people have become addicted to it!

When I take ibuprofen, I have to take 600 mg at a time for it to work for me.  When I'm really bad, I'll take 600 mg every six hours around the clock.  2,400 mg is considered the top of the safe level for this medication and I ALWAYS take it with food to protect my stomach.

You might try malic acid/magnesium supplements and also see if you are deficient in Vitamin D.  These are things that many with fibro are deficient in and that can cause pain and fatigue. 

Sherrine

Posted 7/4/2009 5:35 PM (GMT 0)
I also see a PM doc and I am on morphine and percocet for occasional "break through pain". I have talked with a number of doctors about the right way to go with these strong and dangerous drugs. It is scary to be on something so strong, but I used to have a very physical job (house painting) and my pain has been pretty severe.
For me, going on morphine helped my constant pain level go down from 10+ to somewhere near 6-7. Morphine, like most of the narcotics, works over the long term (i.e. when you take it, you dont feel instant pain relief). When my pain climbs higher, I take the percocet for that quick acting relief.
That said, I have had doctors say that because our pain levels goes up and down throughout the day--its not good to take a long acting narcotic like morphine b/c then you are taking medication during times that you may not actually need it. He said that it would be better to take a fast acting drug only when you need it.
Someday I would like to taper down and off the morphine, but I know I would need alot of help to do it at this point. The percocet feels more addictive b/c you do get that little bit of rush and that scares me so I try not to take too much of it.
The only other drug that worked for my pain was a fentanyl patch but I hated the sweating that it caused---already sweat too much as it is thank you! :-)
I agree with what some other posts said that your pain is prob worse right now due to the stress/ depression from your divorce etc. If you could take some time off while you deal with all that, it would really help you. I feel for you though. These are really hard choices to make. Hope you have family & friends around to help you through it!
Good luck, hope you get some relief soon!
Posted 7/4/2009 8:31 PM (GMT 0)
In the long run morphine can increase your pain, my Doctor will only give me a injection for the pain when it gets really bad so as to break the pain cycle which works for me so I may only get a injection say 3 or 4 times a year. It takes about an hour and a half for the morphine tables to kick in so you really need to know when the pain is going to get bad before it happens. As some one who had been taking massive doses of morphine for a number of years it did not help. In fact reasearch tells us that it will increase our pain. I wish you all the best stress and depression will make the pain a lot worse. I am a great believer in laughter it releases the feel good part of our brain also spoil your self have something to look forward too. Have something that takes your mind off the pain I use meditation at times to cope with the pain and when I went to the pain clinic here in Queensland Australia they now use my meditation on others as it is so sucessful.
Keep happy thoughts, you will be in my prays
Kathy
Posted 7/4/2009 10:47 PM (GMT 0)
Hi, I take vicodin about every 4 hrs, oxycodone every six hrs for breakthru pain and flexril 3 times a day. Before my hip was replaced I also needed a fentanyl patch. So, that said, I don't like to take all these narcotics but I can't help it. I've had both hips replaced 1 in2005 the other in 2007. My left hip, done first, needs redoing but I am not going through all that pain again. I have a bad neck from being rearended, bad shoulders from being dislocated, along with fibro, chostachrondris, colitis and who knows what else. I am fortunate that I have a very understanding and caring dr. My pmr dr. gives me 13 botox injections, so far, every 3 mo.

I guess my answer is yes, I take narcotics.
Posted 7/5/2009 2:34 AM (GMT 0)
Thanks to everyone for your responses.
Rich-no, I am not union, I am a first line office manager. HR is not helpful, they are less understanding than my boss. I may go to the omhudsperson because I think the company is being unreasonable, and they are supposed to help without disclosing my issue if requested. I don't really trust them either, but they are my next hope if my boss declines my flex plan at my next review. I do have disability benefits but I am really scared to take time off due to the layoffs. I have been told by many (docs included) that it may help me to take 4-6 weeks off to get the anxiety under control (much of it is due to work). Again, I am afraid to do that. I am sure either my medical doc or my new therapist would write a time off recommendation. I have come close to admitting myself when I felt suidical - thankfully I know I could not do something so drastic because it would devastate my 28 year old son. I have had more than one "nervous breakdown", just short of completely loosing it. You may be right, maybe I can't afford not to take some time off. I want to see how things work with this new therapiist first.

WhiteChocChip-Ultram is a synthetic med that acts like a narcotic. Binds to the same opiod receptors. Was advertised as not addictive but it is most definitely addictive. Withdrawals are just like narcotic withdrawals. MDs do not seem to understand this and are willing to prescribe Ultram but not prescribe a narcotic. It never ceases to amaze me what the drug companies do.

Sherrine-I take at least 20 different supplements. All recommended by the chronic illness doc as non-presription ways to help my body cope or repair imbalances and defieciencies. Been tested for just about every vitamin and mineral deficiency, cortisol, thyroid, etc, etc.

I have heard of the issue of coming off narcotics and having more pain than before. Ultram does that too. I feel like there is no solution and some days are just hopeless. One would think after all of this time I should be able to cope, to just "get it", live with the fibro. Maybe I could live with it if I did not have to work full time and battle anxiety and depression, too. Maybe, just maybe, once this divorce is over I may start feeling better; I will at least know if I will have to file bankruptcy because of paying alimony to my deadbeat husband! The not knowing is extremely stressful.
I am clinging to my spirituality to see me through...sometimes by a thread...but somehow I think there must be something I am supposed to learn through all of thisl
Again, thanks to everyone for sharing your experiences and ideas. Please don't be too concerned about my mental health...I have a son I love too much to hurt him or myself.
Rose
Posted 7/5/2009 3:26 AM (GMT 0)
Hi, I want you to know, people make it really hard to get help. Because Fibro is invisible, I doubt if we will ever make most people "get it".

This is when I began to get a better, your pain description sounds on the level as mine.

You must become your own advocate! You need a different doctor. You need to walk in to the different doctor (who you know is compassionate, because you asked them when you made the appointment - you did this first!!! (Hi, I'm looking for a doctor that is familiar with Fibro, someone that is understanding and compassionate. Does your doctor treat any people with Fibro? - Usually the nurses will talk to you, if you are nice and very polite) From there, go in and treat everyone very nicely, don't tell them how awful others are - just show them you have knowledge about your Fibromyalgia and then tell him what worked and what did not work.
Tell him you were treated by other docs that didn't have experience with Fibro and the problems associated with it. Tell him you went to pain management, but they wanted too much money, you don't have and they want you to go through other tests that would be costly also. This all is making your life very difficult.
Go as far as saying if you can't help me, maybe you know someone that can - I'm close to the end of knowing what to do.

Write down your information so you don't forget or get nervous. Tell him that you asked other people with Fibro, what works and what didn't. Sound informed!! Sound like someone that is serious and needs someone that is smart enough to help you. Yes, this is patting the doctors ego, but it works!!

Now the medicines that have been suggested, by other people here are good suggestions. I myself, didn't like the patch, because it wasn't a constant medicine, so my pain was up and down.

I use methadone and morphine. The morphine is an ER - extended release. These have been so wonderful. I don't feel "stoned", I feel relief. It was a pain doc that told me about the methadone working well and my last pain doc gave me the morphine to use also.
I know that sound like a lot of meds, but after I got some relief, I was able to do other things to make myself better. I have found taking vitamin, lots of B and some C - and also herbals that are for "detoxing", has made a world of difference.
I now take less pain pills!!! I have a handle on it.

You might need to use something like the Percocet or Norco, these work well, but after time you develop a tolerance and need either more or something different.

I worked my way through and up to the methadone and morphine. These are strong meds, but it is what is helping me now. I hope to figure something natural that will work for all of us, but I wouldn't be able to even think, if I was in pain 24/7!

In the past, I was thinking I don't want to live like this. I was deciding what age I would live to, because I knew I could not continue. My Fibro pain is that severe! I am so tired of trying to prove I am not after the drugs, I'm after the relief from the pain. When I hurt ,I hurt from head to toe, with everything getting worse and worse, because you tighten up.
Anyhow - I hope this helps.

It's all about attitude, being informed, use everything you got, including some ego boosting for the doc, so that you are in a good light - be informed!! You will be treated better if you have suggestions and tell them you are trying your best, to help yourself - you are willing to work with the doc for pain relief - you don't expect miracle, you just need some pain relief first.

Movement is important, so that you don't get stiff - Rest is important, so you don't overdue - Knowledge is power! - you will not be able to help yourself until you get some relief from your pain - and nothing in the tylenol, etc aisle wil help.

I feel very strongly about this, because I was in your shoes, a short time ago - I don't want you to feel this bad - it's awful. I hope this helps with all my heart.

Thinking of you
Posted 7/6/2009 12:48 AM (GMT 0)
Thank you lucky 113. I have been considering searching for the type of doc you descriibe. That takes time and energy and I have little of both but it would be work it. I, too, like many others I am sure, am not looking for meds for the "ride"...I am dependent on pain meds to be able to function in my life, at least at some level of "normalcy"!
Posted 7/6/2009 1:16 AM (GMT 0)
I can relate to what you are saying I lived on pain killers nothing helped my Doctor did some looking into other medications in the end she gave me Baclofen. Now this is addictive so I am careful whith taking them. I now take no PAIN KILLERS I only take Endep and the Balofen when I need it. I take the dose I need some times I take up to four tablets but it works in a matter of minutes and has for me no side effects. So I know how to end this pain I know several of my friends also take this tablet also I sleep at night now and when I say sleep I mean 6 or 7 hours at least every night. This also lowers the pain I feel, I had a problem to start with about taking something that was addictive but now I can go two or three days with taking anything. I have no pain killers at all and have not taken anything for the pain since the first two weeks I started taking these tablets.
Kathy
Posted 7/6/2009 2:20 AM (GMT 0)
Hi Lucky and Welcome to the forum. Please start a new thread and introduce yourself to the forum so we can start to get to know you, OK??

Rose,

I take Percocet 10/325mg every four hours up to five a day, but usually take only four a day. I have taken darvocet and ultram and morphine and other morphine derivatives, but the percocet is the one that keeps me functioning. I should also say that I also take Lyrica, 50 mg in the am and 100mg at night.

I know that narcotics help me and I need to take them. I see my doctor every month who is a pain specialist and she gives me my prescription for the month. I did go to my primary for years and he eventually referred me to my pain doctor when I needed the extra percocet. He wanted me to be evaluated by a pain specialist and it was the best thing I ever did. I also have occasionally sciatica going down my right leg from a previous back history as well.

I guess what I want to say is that a lot of people say that narcotics don't help fibromyalgia. That's not true from where I sit. I would be lost without my percocet for sure. That is my opinion and I hope it helps you in some small way.

Gentle Hugs and God's blessings.

Lindaloo
Posted 7/6/2009 3:08 AM (GMT 0)
At the start of a bunch of tests before I was diagnosed, I took Ultram, and it really didn't help me either. I went to my doctor about it, and he immediately prescibed me lortab 5s. I have been on them every since. I don't understand why your doctor won't prescibe any narcotics. Like you said, the PMC stuff could take months, and their treatments are only temporary. My grandmother sees a PMC but also takes narcotics. But, I do have fibro, and I am being treated with a narcotic pain killer, along with lyrica and some other meds.
Posted 7/6/2009 5:19 PM (GMT 0)
Thanks for all of the new inputs! I may change to the other PMC that is not as close, is related to the same hospital, but does have a different protocol, including from what I hear the option of using narcotic pain meds as needed. I really appreciate everyone sharing the different things they have tried. It gives me hope.
(((hugs to all)))
Rose
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