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Dr. P and FMily-I'm Losing It!
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meesh69 posted:
Hello Everyone, I haven't been on here for a while, but I am at the end of my rope! I was dxd in August. It took many doctors to find a good PCP, but finally I think I have? He recommended a good pain management doctor which I will see in one week. However, he said that opiates are not a good option for FM and that the FDA frowns upon using them for FM. I have been given them for three years now due to endometriosis and all the other things they thought I had until discovering it was FM in August. He says that basically I will end up having to increase the dose and use stronger and stronger pain medicine to get the same relief and in five years I would be taking an enormous amount of them. He says that the FDA does not see this as a worth while option. My question to you Dr. P is this... do you prescribe opiates to your patients? It seems you never like to answer these questions due to everyone being different, etc, etc., but for strictly FM does the research really show, and does the FDA really feel that opiates are not a good option? If you do prescribe them, do you find that your patients are not getting relief after say five years? I have used the same amount for the last three years. Only when it was for endo pain only it was for a week out of the month as opposed to daily. Anyway, I use 3-4 10 mg of vicodin daily. He says this is already an enormous amount? Of course I can see why taking this type of pain medicine is not good for you, and I truly wonder why my FM seems to be so much worse than what I hear from others. Am I just a wimp? When I have a bad flare, which has happened three times since August, I have had to go to the hospital. It takes a shot of morphine and 10 mg of valium to get me back to stable. Then I can maintain it pretty well with the long list of meds. Cymbalta 60 mg, lyrica 75 mg 2x day, vitamin d, folic acid, metalaxin (sp?, which I hardly ever take), and 3-4 10 mg vicodin, and 5 mg of valium (that I only use when I get severe muscle spasms). He says for my age (40 years old) I should not be on this much medicine. Then he said that my FM is not that bad compared to many of his other patients? I said then I must be doing a good job (unintentionally) of hiding it because I do not see how almost being bedridden without all this medicine and needing morphine and valium to stop the severe pain at the hospital could be considered "not that bad?" Okay, maybe I did not find a good doctor after all? :(

Sorry this is so long..... But these medications just get me to where I can do light housework, take care of my kids (with the help of a nanny), cooking, and very minimal errands. I am sorry but if my choice is to be on an enormous amount of pain medicine in five years, or live my life with four children and a husband on the couch, I would have to choose the pain medicine. Is this wrong? Am I missing something? I swear I get no joy from any of these medicines. They strictly just make my life somewhat bearable.

This doctor also says that this the disease doctors hate to give out the most because he says I can research all day long and I will never find a medicine that will make it better. What a grim outlook. I feel so depressed right now. I do not see how I can do this much longer. I just had to take my son to an appointment that lasted much longer than I expected (4 hours), and I feel like someone has tried to break every bone in my body and failed!

I guess I have to hope and pray that this pain medicine doctor really is a good one. This will be the fifth doctor I will have seen for this! I really do not know how people live like this.
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jojodance responded:
I hate dependining on pain meds to feel barely functional. I just went through a very stressful move and have also been dealing with the loss of my income and waiting on SSD. I was out getting help with a utility bill and almost went to emergency I was feeling so bad and really unsafe driving. I took one 50mg tramadol in the morning and waited until evening to take a Loretab. I was literally crying in the shower trying to get some relief. My children adult children really want me to be the way I was and we talk about me getting back to my exercise routine. I think my son thinks that I can exercise my way back to not needing a walker to get around. I have been have severe memory loss and confusion. The only way I can end this post is to say my faith in God is very strong and he helps me to endure so I take it a day at a time. I'm alive and I love life so its all good.
 
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1wareaglefan responded:
Hello, Meesh....welcome back! I'm sorry you're suffering so much with this pain. I'm obviously not Dr. P., but I have my opinion on what you've written.

I went to a rheumatologist in a very good hospital in a large city. He basically told me the same thing your doctor said about pain meds. So I left, determined to be the good little patient and follow his advice. His answer was to improve my sleep, which would then take away my pain. Well, my sleep is greatly improved, but I still have pain!

I decided that since he's not the one experiencing the pain and I was....and since my quality of life had diminished so much, I was going to take whatever I needed to in order to be able to function through my day.

My general doctor does give me pain meds to take as needed. I decided that in order to live my life with some degree of normalcy, I would take them. The pain that you describe is definitely worse than anything I've experienced, so I hope your new pain management doctor is willing to help you.

I'm trying to say that we're all different, and many of us are greatly helped by pain meds. I also read about chronic pain and learned that pain on a daily basis takes a toll on our bodies, which can be worse than taking prescribed pain medication according to doctor's orders.

I hope your new doctor is able to help you. Please keep us posted on how you're doing.

God bless you....Elizabeth
 
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An_199528 replied to 1wareaglefan's response:
Hello-

Unfortunately, your experience has been shared by many of us. I was sent to a pain management clinic and they told me that it had taken my body 20 years of terrible sleep to get this bad so it would take as long to get better. Um, I was 26 when they told me that (I'm now 28) and already had had over a decade of chronic pain. And now they're telling me it would take me 20 more years to get better? That was the farthest thing from helpful they could have told me. It felt very dismissive--and it was two youngish doctors who probably have not experienced chronic pain. They also told me to exercise--which I agree with and do, but when I wanted them to address my intolerable pain, there were no answers.

I now have access to vicodin because of an understanding PCP. I'm kind of with you in that it's not that I like taking them, but I'd rather do that and live my life (a little), than be on the couch. I still work part-time but I would possibly need to consider disability if I didn't have pain meds.

I understand the medical community's point of view and it is likely that we will have to increase strength or amount of pain meds over the years. But they would rather have me go through probably years of fighting to get disability?

I don't have many answers for you. I have been struggling with feeling like pain is my cornerstone in life. You may and probably will feel some improvements once you have been on the meds for a little longer. But even still, for many of us, pain is an everyday experience. Honestly, many days I feel like there is a "grim outlook". But there are many things we can do to not necessarily take the pain away, but to make our lives more tolerable.

I feel like pain meds have given me the ability to exercise, to go to social events with my husband, and to at least do the bare minimum. It can be a touchy subject with doctors but if you feel like having pain meds is the best treatment for you, then stand your ground. There are some good suggestions out there about handling the pain med issue with your doctor.

I hope you can get some relief. Don't let your doctor minimize your pain. I feel like I have a lot of pain but I have never needed to go to the ER for it. What I mean by that, is not that you're a wimp, but that your pain sounds really bad!
 
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An_199529 responded:
Meesh69,

I have copied a post of Dr. Pelligrino's that describes "central sensitization". This includes the opiod pathway and medications that target this area! This is a current discussion if you would like to read it.

Dr. Pellegrino's Post:

There's a lot we can do for central sensitization...every FM treatment available works on a nerve "target" to try to decrease pain intensity or improve pain blocking We can't rewire things back to normal, though, at least not yet.

So what are nerve targets? These refer to places in the central nervous system where medicines or other treatments (eg. acupuncture, TNS unit) can activate or inhibit neurobiological responses to control pain. Central sensitization (CS) is the rewired endpoint in FM that reflects both abnormal pain activation and defective pain inhibition: I call this the "double whammy" effect where too much pain forms and too little is blocked.

In FM, the pain activating system becomes oversensitive due to persistent pain triggers leading abnormal responses from neuro-compounds such as substance P and glutamate (too much of these). These compounds increase pain signals leading to wind-up and pain amplification. Along this pathway, different medicines work on different targets such as the sodium channels (eg amitriptyline) or the calcium channels (eg. pregabalin) or the NMDA areas where substance P and glutamate are active (NMDA blockers like ketamine or dextromethorphan). In the brain, dopamine enhancing meds (eg pramipexole) may lessen pain via dopamine targets. And so on....

In FM, the pain inhibitory pathway becomes defective, including the DNIC system, which leads to impaired filtering of pain signals (more pain gets through). 2 main nerve pathways are involved on the inhibitory side, the opioid pathway and the serotonin-norepinephrine pathway. Opioid meds target the opioid pathway; they help improve pain blocking. Likewise, SNRI meds (eg duloxitine, milnacipran) are felt to work by improving the availability of serotonin and norepineprine to inhibit pain. Some meds (eg. tramadol) target two areas (ie. both opiod and seroton-norepi pathways).

I hope that this really helps. I have been taking "Hydrocodone" for a long time now with no problems!
 
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1wareaglefan replied to An_199529's response:
Hello, Anon.....I read the above article, and I want to thank you for posting it! I also take hydrocodone (a very low dose), and I appreciate finding out from yet another source that it's OK.

Thanks again......Elizabeth
 
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An_199530 replied to 1wareaglefan's response:
Your quit welcome Elizabeth!

I really do not think so many doctors should be so cautious with prescribing opioids. There is only a few patients who will become addicted and abuse the med but there are many who will not!

These meds can be so helpful. I, too, only take 1-2 tabs daily. It helps to get me through the day!
 
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KatmanduLou responded:
I'm sorry you're having such a bad time with your FM. My rheumatologist has me on elavil - it's an old antidepressant, and works quite well for me. I take it at night and it helps me sleep, and he says I'm on a small dose, but the relief is amazing!.

And I know we're all different. When I'm in pain I have a 'scrip for Tramadol, and it's rare that I take it. I needed it Tues to recover from hauling luggage through three airports; at least I didn't have to endure a "grope-down" at security! haha

I hope you find relief soon!
 
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angelldakota responded:
Hi Meesh... I too am on opiates... I have several problems however... I have what my Drs like to call Structure pain... Which means according to them my damage in my spine and neck... my nerves and muscles... and legs and arms and hands... and some of my other problems cause pain too...

I take percocet and Ms Contin... When my structure problems inflame or become a major problem I know my FM flares are a lot worse... And the Flares do get triggered by the rest of the pain... I am usually never pain free but I can get it down to a 4 or 5 and to me that is tolerable...

I agree that we aren't all the same tho because i have read about people with multiple problems and people with FM alone having luck with opiates... one of my friends has only FM and she uses lortab... and some usual FM meds that don't really help much... But she has been almost pain free sometimes... She didn't have anything cause it but it might have been genetic her mom and grandmother had it... but of course they were nuts till they were in their late years...

I hope you can get a good pain management dr and he can help you... You might want to take a few notes on what the pain is like... do you feel fatigue... foggy,,, achy all over especially in the morning... hard time concentrating... forget things... can you sleep.... etc...
and what has helped... heat... rest... hot baths... small stretches... excersise... what medication has helped...

Do you have any MRI reports or Xray reports you can take into him... Any records stating any arthritus or any other problems you might be dealing with... you can get them from dr offices from your records...

I find the more info I can bring with me the faster they can help me and/or the faster they can get work ups to see if anything has changed... I just started a new pain management dr a couple of weeks ago and he started treating me right away that day because I had my records for my MRIs and Xrays with me... Dr's admire patients and think patients are serious about helping with their recovery if they are so organized I have found out... just a suggestion...

I hope you find some help and can get feeling better real soon... Welcome back...

Grasp the Holiday Spirit and grasp some sunshine... Tomorrow is a new day and have faith that God is leading you to help...

take care... bless you... luv.. jan/angelldakota
 
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Mark Pellegrino, MD responded:
Hi Meesch,

Good luck with your pain doc. Opioid meds are commonly used in the treatment of FM can be an effective if used and monitored carefully. I prescribe opioids for my patients if I feel they are medically indicated. Tolerance over time is a problem for many, unfortunately. And recent data suggests that those who take chronic opioids are not reporting improvement in quality of life compared to those who have chronic pain without taking opioids.

Opioids are not approved specifically for FM but they are, of course, approved for pain and FM causes a lot of pain, as we all know. Surveys and studies confirm that opioids are the most commonly prescribed medicine for the treatment of fibro pain. Doctors have to be careful with this class of medicine because of the potential dangers including abuse and addiction. An overdose can be fatal, so it is a class of medicine that has to be respected and responsibly used.

Discussions about opioids often generates strong feelings here, it seems, including comments about how upset people are with their doctors. Doctors and patients have strong opinions and philosophies, comfort levels and experiences that may differ, but the common goal is to find a treatment program that relieves pain and improves quality of life.

I'm hopeful that you will find a stable comfortable baseline so you can keep smiling that great smile of yours!

Dr. P


 
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meesh69 replied to Mark Pellegrino, MD's response:
Thanks so much Dr. P and all. I will let you know how it goes. I have never been to a pain specialist, so I am a little nervous. I will let you all know how it goes. Thanks again :)
 
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lb707 replied to meesh69's response:
I find it interesting how they tell us chronic pain can cause all kinds of problems......then they have little to offer for chronic pain.

The strongest thing I have ever taken for my pain is tramadol due to my own fear of meds. I am glad I have when I need it but still fearful of addiction when addiction is no problem with me. You should have heard me when the Dr. wanted to prescribe Vicodin. Then I read up on Tramadol and just laughed at myself as it was just as addicting.

Because I have seen the problem first had with ones who become addicted to prescription drugs and the lies they tell to get them.... it has made me understand the situation Dr's are in. That is why I like to have long term relationships with Dr's so they know me and I can trust they are doing their best to treat me.

Laura

I
 
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An_199531 responded:
I have tried many pain drugs over the years that temporarily mask the pain. It was always a drudgery getting out of bed and to work in the mornings. Sometimes I have to sit through three hour meetings until 9 at night. I, too, had four children and a couch husband (retired).
Last year I changed doctors and was prescribed a new med called Sevella, espcially for fibro. It had its side effects: blurry vision, hot flashes and excessive sweating when working out, but hey! I could at last attempt exercise. I didn't realize how much it relieved the pain until I went off of it. It has been four weeks. We just had a rainy spell and it brought about all the old aches and pains. Unfortunately, my new insurance does not recognize this drug. It is similar to an anitidepressant. You might look into it. Good luck.
 
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FatherDan responded:
I have fibromyalgia, but I also have MRI proveable low back pain and osteoarthritis that is a normal part of the aging process.

As a result, after getting a consult from a pain specialist, my PCP put me on opiates.

I have had one small dosage increase in 10 years. As others have said, it makes life bearable, but does not remove all pain.

As my doctor aptly put it, general anesthesia is the only way to remove all pain.
 
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elizabeth1304 responded:
Hi Meesh
I'm Beth from AL and I want you to know my story. I went from dr to dr trying to find out what was wrong. When I was diagnosed, the md didn't "believe" in opiates for pain! I happened to already be taking them for disc disease. Trying to be the "good little patient" also, I tried to decrease but the pain was unbearable. My neurologist has continued to give them to me. Today is a horrid pain day. I suffer from headaches alot also. Goes along with FM.
Using around the same amount as you keeps me moving but that is about all. My life is completely different. I have had this for many years and from me to you: do what you have to do to function! I have guilt, thoughts of being a wimp etc., etc., etc. I just turned 50 years old and I understand where you are coming from. My youngest child is 14 and it is still hard. You keep your head up! All of us are going to get through this. Take care!
Beth


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