Fibromyalgia-going to pain clinic, not getting the results I need, how do I ask for a higher dose?

Question

I was diagnosed with Fibro by a Neuro surgeon and referred to a pain treatment center here in Kentucky. The doctor was very cold and unsympathetic and kept asking me about my casper report. I'm also on Xanax for anxiety and I only get it from my Family physician but he's partnered with several other physicians so their names came up on the report looking as if I'm doctor hopping. He prescribed me Lortab 10s 2x daily and Tramadol 3x daily along with Zanaflex and Lyrica. None of this helps. I've been off work since October 1 and waiting short term disability from my insurane company.I stay in constant pain. I have shoulder, back, head and neck migraines at least 4 times per week.I'm exhausted and can't do household chores which is hindering my marriage. My husband is very unsympathetic towards the severity of this disease.I need my doctor to prescribe me something that will work continually through the day, not for just 4 hours. Any suggestions? Oxycontin? Fentanyl patch??

Answer 1

Fibromyalgia is a very painful and difficult condition for the patient and their families. It is unfortunate that your husband fails to understand the impact this condition has on you. One of the worst features of fibromyalgia is the lack of outward physical signs to show others the reason for your complaints. I fully understand your plight, I also have a chronic pain condition, which has no outward physical manifestation, but often prevents even minimal functioning.

That being said, long acting narcotic analgesics are not considered appropriate for patients with fibromyalgia. This is not because the patients do not have enough pain to warrant a narcotic analgesic, but instead, because they are mostly minimally effective. They will numb the opiate receptors in the brain and decrease your perception of pain in the short run, but this will be a short lived effect, and within a few weeks to months you will require increasing doses of the long acting narcotics to sustain the effect. As the opiate receptors get more and more tolerant, you continue to require increases until you are on very high doses, and continue having complaints of "level 10 pain". This has been seen repeatedly in fibromyalgia patients over the years. As the long acting narcotics (and the hydrocodone you currently have prescribed) are potentially very addictive, and definately will cause physiologic dependence, it is considered in the patient's best interest to limit the use of these medications.

In fibromyalgia the actual cause of the condition has not been proven. The current theory called "central sensitization." This theory states that people with fibromyalgia have a lower threshold for pain because of increased sensitivity in the brain to pain signals. Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain's pain receptors (neurons) — which receive signals from the neurotransmitters — seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals. In this way, pressure on a spot on the body that wouldn't hurt someone without fibromyalgia can be very painful to someone who has the condition. But what initiates this process of central sensitization isn't known.

In order to control the flow of nerve impulses it is better to work with the neurotransmitters and use neuromodulating agents. Also use of symptomatic treatments is considered appropriate. The pregabalin you currently are using is appropriate and should be maximized, Zanaflex is also a good medication. For analgesia Tramadol ER and acetaminophen are usually the best options, the narcotics not being shown to have lasting effect. Xanax or some other benzodiazepine is frequently used, and antidepressant medications are used frequently. (I also often consider trying antiepileptic drugs which work as neuromodulators)

The key to proper management of this condition, however, is not usually based on medications. Physical therapy, biofeedback, psychological support and possibly the use of other physical modalities such as chiropractic manipulation or accupuncture are helpful. Fibromyalgia requires the effort of the patient to get out and use the body to move the muscle through the pain syndrome, otherwise the issue intensifies.

I know this is not the answer you wanted, but I'm afraid it is the appropriate answer for your condition. Use of long acting narcotic analgesic medications in your condition would be detrimental to your care and would decrease your quality of life. If your husband has trouble supporting your issues now, please have him get with a fibromyalgia support group, let him know you are not the only person like you. I used to insist my patients bring their spouses in on occaison for appointments, so they could see the room full of other patients with no outward physical signs of problems but with severe and disabling pain. The spouse usually become even more unsupportive if they think their spouses are just drug users. This is unfortunate but true, and a frequent cause of marital problems and even divorce in chronic pain patients.

Trust me I do understand. I wish you the best. Work with your pain management team, they seem to be on the right track!

EDIT: Sorry to add more, but that is also some good information from Andee. Keep with your current meds until they are maximized, then try any nutritional supplements your pain team endorses.

I wish you the best. God Bless

Answer 2

I am sorry to hear you are going through such a hard time. It is difficult dealing with the pain, let alone have an unsympathetic support group. This type of pain is so subjective, not easily seen by the outside world, so they can often have a hard time believing it. Perhaps you can get your husband to come with you to your medical appointments, and maybe he can understand that your pain is for real.

I have chronic pain, not from fibro (that I know of any way) and my doctor prescribed me Tramadol. There is also an extended release tab called Ultram has Tramadol in it) that you take once a day, and that is intended for people who need round the clock treatment. I am currently taking 300 milligrams, the highest amount. You could request this particular drug, though sometimes insurance may not cover it.

I wouldn't recommend taking narcotics as they can become addictive.

I have previously tried Cymbalta, which is an antidepressant that is used to treat nerve pain. I know this is difficult, but if you can exercise and eat right, it could help you to feel a better, if eevn a little. I have also used the Lidoderm patch, which unfortunately did not work for my pain, but that does not mean it woldn't work for you.

I am sorry if I am not much help. My prayers go out to you. I hope you find the treatment that best suits you so you can live as pain free as possible!

Answer 3

This probably will irritate you but I have had fibro diagnosis since early 1990's. Narcotics are not the answer. They will barely touch the surface of your pain and you will need to increase the dosage until you are borderline toxic overdose all the time.
I take Lexapro, tramadol as needed usually not more than twice a day, soma very rarely(just when I am in a severe flareup).
It is too easy to get into the xanax, soma, loracet cycle and progress on to oxycontin, demerol, morphine all that will lead to is an early death. Fibro will not kill you but the pain can depress you so much you do not want to live. The pain and depression from coping with pain run a ragged circle also. You need coing help and learning to live with it. If not you will go to bed get on heavy drugs and wait to die. Getting out into sunlight at least and hour a day, trying to slowly walk even if it is 5 minutes and working up over a year. The brief exercise, fresh air and sunshine will help more than you can imagine. I also take ambien to sleep One a night. Sleep improvements can help fibro pain by 50-75%. Good Luck!

Answer 4

I was finally diagnosed with Fibromyalgia four years ago after years of suffering and going to see Doctors about my aches and pains only to be put through series of tests and told that nothing was wrong and there was no reason for me to be hurting. I had researched the possible causes and was relieved when my Doctor at the Mayo Clinic in Jacksonville, Florida identified it as FMS.

You need to get off the narcotics. They only make you droop. You need a good night's sleep. My Doctor prescribed Trazadone (an anti-depressant with a sleep aid) that I take at night. I have Flexeril that I take in extreme cases but, only at night.

Your husband is tired of seeing you so doped up all the time.

There are times when I get aggravated because of the aches and pains. I rest when I need to. I go to bed at a decent time each night. I wake up and grumble because each step I take toward the coffee pot is agonizing. However, I found that, if I ease myself into my day, I do real good.

I found a book at Barnes and Noble titled, "What Your Doctor May NOT tell you about Fibromyalgia" by R. Paul St. Amand, M.D., and Claudia Craig Marek. It really is enlightening. Basically, what they are writing is that every day things that we use and ingest cause chronic pain.

You want to think about the fact that, the drugs you are taking are damaging to your liver and kidneys and can cause you other problems down the road. Sometimes, a simple aspirin can relieve the worst of the pain enough to make you forget about it.

Get mad. Don't let it get you down and take control of your body.

Answer 5

You don't want narcotic pain killers to take daily. You will become addicted and that will increase your problems. Try changing your muscle relaxer from Zanaflex to Flexeril. Flexeril is much better at treating Fibromyalgia than Zanaflex. I've had Fibro for 7 years and have taken both Zanaflex and Flexeril and Flexeril works better. I also take Celexa, which is an anti-depressant. It helps my pain that is in my spine, ribcage and breast bone. I don't know how long you've been taking the Lyrica, but it may not have had time to reach its full potential. I think it took about 2 months for me to get used to the Lyrica and feel its full effects. Lyrica made me tired for about 6 weeks. Since then, Lyrica has worked very well for me. I take 150 mg daily. I've been taking it almost 2 years. If you're taking Lortab 2x a day, Tramadol 3x a day, plus Zanaflex and Lyrica, all of those medicines are contributing to your tiredness. Fibro exhausts you yes, but those medications have the side effects of drowsiness too. Does Lortab and Tramadol even help? If they don't, then you shouldn't take them because they are narcotics. Some will say that Tramadol isn't addicting, but it is, just not as much as other. I don't like Tramadol because it made my muscles ache and made me itch. The 3 medications that help me the most are Lyrica, Celexa, and Flexeril.

There's a good book called "Treating and Beating Fibromyalgia" by Dr. Rodger Murphree. Out of all the Fibro books I have read, I like his the best.

There's some vitamin supplements that help. The ones I find that work the best are: MSM - 2000mg daily- helps ligaments, tendons, and muscles. Magnesium - 500mg daily- helps with energy production in the muscle cells. The amino acid L-carnitine - 500-2000mg daily-- helps a lot with energy. Co-enzyme A -- 2 capsules a day-- helps with overall health and energy.

Avoid sugar. Sugar robs muscles of energy.

Answer 6

I'm sorry that you are suffering so much, both with Fibro symptoms, and with getting inadequate care from your pain management doctor (btw, does he know that you see a doctor that is in a group setting, and that being the reason for several docs listed on your report?). I've had Fibro for about 5 years now, so I know just how disabling it can be, and over that time, I've also heard a lot of treatment stories that sound a lot more like nightmares!

The difficult thing about Fibro is that it's so unique to each one of us....our symptoms, our triggers, and treatment can be hit or miss. Figuring out what works best for you can be very time consuming, exhausting, and VERY frustrating. I can still remember all too clearly those long months of agonizing pain, fatigue so bad that I could barely move, feeling like my body was out of control, and wondering if life was ever going to get better.

Fortunately, I have a great primary care doctor, who helped me put together a good team to manage my care, and also helped me to develop a solid "game plan". Fibro is an illness that needs to be attacked from many different angles. Medical, nutritional, physical, and mental. I have learned from hard experience that it doesn't take much to throw an already compromised body for a loop, and if I slack even a little bit in one of those areas, my body lets me know in a big hurry!

As for pain meds, I have to say I totally disagree with much of what has been said so far, and so does my doctor (thank goodness!). Back in the beginning, I started out taking Vicodin ES, which, like you, didn't do much for the pain (other than make me kinda not care for a little bit that it was there!). All it did was make me loopy for a couple of hours, then leave me with a whopping headache. After about 6-8 months of that, I sat down and had a long talk with my doctor about all of it. I explained my frustrations with my current treatment, and where, ideally, I would like to be in terms of pain control. I explained that I wanted to take less medication, but have it last longer, and to NOT be left feeling loopy.

We developed a plan that is somewhat unusual, but for the past 4 1/2 years, has worked out very well. He prescribed Oxycontin 10mg, which I can take every 8 hours, but only as needed. It can be once a day, 3 times a day, or not at all...it just depends on my pain levels. And I really don't care what "research" says. It's highly effective for my pain, I haven't developed a tolerance that's required me to need a higher dosage, and my pain levels haven't increased. For the doctor who commented...pick up any copy of the National Fibromyalgia Network's newsletters, where the research of doctors who are nationally accredited in the field of Fibromyalgia have said time and again that opiates ARE safe and effective alternatives for FMS pain! And while yes, opiates do have the potential for addiction, there are times when the benefits far outweigh the risks! Like, um, having a life that's not riddled with pain 24/7!

That being said, pain meds are by no means the "only" treatment you need or should rely on. Proper nutrition, adequate sleep, and exercise should also be a BIG part of your treatment protocol (the major part!). Things like bio-feedback, massage, psychotherapy (chronic pain can cause mental health issues), physical therapy, chiropratics, and even acupuncture are a few of among many available treatment options. For me, a really great alternative therapy called Ortho-Bionomy works great, especially at those times when the touch of massage or chiropractics is too painful!

I wish you all the best, and hope you find a way to relief from your pain soon!

Answer 7

The goal of pain medications is not just to relieve pain, but to allow you to function more. If a pain medication relieves your pain, but leaves you with no energy, that is not effective either. You want a drug that will increase your activity.

If you really want to get rid of your migraines, ask for the anti-epileptic drug topamax. It's a very hard medicine to get used to and will make you feel dopey and stupid. After you are on for a few months, most of these side effects go away. Try other anti-epileptic medications first, but if they fail and you are tired of migraines, this medicine will get rid of them.

For fatigue, I suggest Wellbutrin. It's an antidepressant, but a mild stimulant.

As for narcotics, I would consider asking for methadone for your pain. It's one drug that you don't need ever increasing doses. You don't build a tolerance to it like other narcotics.

I also suggest you avoid temperature extremes, nothing to hot or too cold. Put some nice padding on your bed like an old sleeping bag over your matress to sleep on.

Answer 8

Oxycotin is a good pain management but its very addicting and you will need to be weined off it. My mother is 1 week away from a spinal fusion operation and you can imagine the pain she is in. Her pain management consist of percoset 10 4 x's daily and 15 ml morphine every 12 hours.

Answer 9

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