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My doctor doesn't believe in meds...I am not sure he even believes my pain.
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Sillyhatlady posted:
Hello! I live a life in chronic pain, if you can call it a life. Basic rundown - started with headaches as a very young child. Those continued to disrupt my life for several days each month. I learned to deal, went to college, started a career. As I got older, my health issues became more severe. At this point, I have been diagnised with chronic daily headaches, occipital and trigeminal nerualgia, classic migraines, fibromyalgia, restless leg syndrome, chronic insomnia, IBS, arthritis, chronic lower back pain, anxiety, and the list seems to go on and on. I am 36 years old.

I recently moved to a rural community because I have had to resign from my job and move in with my mother. I have had all types of testing done and tried numerous things for preventative and acute pain. At this time, I am in pain every day and it is quite debilitating. I might have 2 days a week where I can function "normally" part of the day, meaning the pain is at a tolerable level, kind of a lull, and I have to do what I can during that time.

My general practitioner refuses to work with me because she doesn't understand pain management enough. She has sent me to the only pain management specialist that is covered by my insurance. I met with him for 5 minutes and he farmed me out to other doctors. I am receiving cortisone shots in my back and neck and am learning biofeedback. Both of which I am very excited about but the results of the injections has been minimal and the biofeedback takes time.

The big question-what am I supposed to do about my pain while I am learning biofeedback? The pain specialist does not believe in medications for pain so that leaves me in bed 80% of my week, in pain. What am I supposed to do? There are not other doctor options in my area. How do I get the pain specialist to understand the pain I am in?? I am not a junkie. I am not a faker. I have true debilitating chronic pain and I need relief. He won't listen to me and only sees me for a few minutes just to set up another round of injections. What can I do???
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CozyTime responded:
I feel so sad for your situation ! You have some of the worst headaches there are. I don't think I saw cluster and I'm glad of that!!!

You need to get your other medical records and make some copies. Print of the type of headaches your having and give to your reg Dr. Make a return visit for a week. While your doing that keep a chart saying how bad the HA was and your daily ability to function.

If you got treatment before you moved ask them to call or write that Dr. Otherwise go to the next closet town looking for help. Take all records. If they want to refer you ask for a months supply of something to help. Stress will make them worse.

With the Internet your Dr could spend a half an hour to start to understand you need relief on hand. Also ALWAY use only one drug store. You can/or they can print your records showing how often you had Meds filled.

It makes me ANGERY but we have to fight it seems.

Otherwise next bad one go to ER or an urgent care, get treatment, tell them you have a Dr who doesn't understand headaches and your paying the price and ask for some referrals. They should do that. Otherwise you'll be there!!

Wishing you much success.
 
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itmatsb responded:
That's really outrageous!! Yes, you need acute pain relief in the meantime. And how bad to keep giving you cortisone shots which destroy your body. And he only spends 5 minutes with you. My first visits with all my neurologists, headache specialists, etc., spend at least 45 minutes with a first visit. There are better ways to treat you, including preventative meds, nerve block injections, Botox injections, accupuncture, etc.

You need to find another doctor even if it's out of your area. The one that you have now, aside from the biofeedback, sounds like an absolute bozo.

Get another doctor ASAP. It will help you function some with the pain relief. Functioning time is worth money, so pay the money for another doctor and you will also get relief from the terrible pain as well.

Good luck. And please let me know how you are doing.

Sara
 
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carpetcrawler5 responded:
Your body gets into a pain mode and "forgets " to leave you. More migraines give you more because of nerve irritation and inflammation, so it's easier to get back in pain. That's not just with headaches, other types of pain also. more pain meds may not help you forever. Have you ever tried using a TENS? Didn't your pain dr give you a precsription for one? He should. You can get one over the internet or maybe a PT if he doesn't.

Headache is one of the many symptoms of fibro, unfortunatley. What are you taking for it? Have you tried Lyrica or Nuerontin? Also look up all of your meds and see if any of the side effects are headache. Too much pain meds also can give you more headaches.

I take Elavil for insomnia and when I need to sleep off pain. It's very hard to sleep when you're in a lot of pain.

Do you take NSAIDs for the arthritis? Some times you can use them for headaches also, the prescription types such as Indomethicin or Bextra, etadolac or Mobic. Only take them when you need them, they aren't good to take every day.

Try putting ice around your head. Get Techni-ice and wrap them into bandanas and freeze them, then wrap them whereever you have pain.
 
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itmatsb responded:
BTW, when I said, "The one that you have now, aside from the biofeedback, sounds like an absolute bozo.", below is some more info.

I tried biofeedback for several sessions and gave it up when it didn't work. When I asked my neurologist about it, who I've been seeing for the past 3 years, he said that my migraines were too severe for the biofeedback to work.

Believe me that you are asking for trouble if you keep getting the cortisone shots which are steroids.

Have not heard back from you having asked for help. And I am very worried about what you related.

Please answer back since we are trying to help you.
 
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Sillyhatlady replied to CozyTime's response:
I have another appointment with my "pain specialist" next week and hopefully I will be able to stand up for myself without losing my composure. I will let you know how it goes! Thank you for your support!

I have a standing order for nubain, 4 times a month and I went in last Friday and the nurse refused to give it to me because she didn't feel it was necessary. I immediately went to the DR who wrote the orders and also spent a lot of time with the head honcho filing a complaint because I get hassled every time I go in even though I am following the orders from the doctor. VERY frustrating!!!
 
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Sillyhatlady replied to itmatsb's response:
I am trying to find a new physician but in the area I live in, there is little to choose from. I am going back to the "pain specialist" next week and I have already written my speech and gathered a lot of information to present to him. If that doesn't work, I will be seeking out his boss immediately as well as filing a complaint with the medical board or whoever would be in charge of monitoring doctors! I will let you know how it all goes!
 
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Sillyhatlady replied to carpetcrawler5's response:
You have some very good ideas and I have tried them all! LOL My headaches are something that I have had since I was a young child. I have never had a day without a headache. They aren't always severe, but they are always present. We have been working on controlling them my entire life and have had little success. I do use a TENS unit and have tried every type of preventative med as well as things like maxalt and imitrix. I am allergic to both! My throat swells shut with them so they are not an option.

I have been on Lyrica, Cymbalta, and Nuerontin. The side effects I had were not very pleasant and I didn't see a difference in the pain. It is really tricky because with all of the issues I have, it is hard to seperate the pain...is it headache? fibro? arthritis? They are all interconnected and add in the no sleep and they all get more severe. I don't take many meds for pain because I don't want the headaches from taking them too often but since I don't take them as often as I should, I still have all of the pain. It is such a catch 22......if you take the meds, you get headaches. If you don't take the meds, you get headaches! It is such a vicious cycle that just cannot seem to be broken.

I will try that Techni-ice. I haven't heard of that. I also am using O24 which is camphor oil with several other oils to help with the aches and pains. It eases the pain some and the scent relaxes me. The people around me don't like the smell but I don't really care too much about that! LOL

Thanks for your advice! I always appreciate any suggestions. I see my pain specialist next week. I am giving him one more chance. I will let you know what happens!!
 
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Sillyhatlady replied to itmatsb's response:
I am sorry for not responding sooner. I replied to your earlier post but wanted to address this one soon. I have been so frustrated! I also hate to complain and bother people but I really need to realize that people on this site, people like you really do care! In my world, I hate burdening people and feel like such a big baby when I talk about how I feel. My entire life (or lack of) centers around my health problems. I have lost touch with who and what I am because the pain overshadows who I used to be. I don't let many people know how unbearable the pain really is. I put on a happy smile because I learned at an early age that a lot of people don't believe in the pain so I try to pretend it isn't there. Crappy way to live but it all comes down to me being tired of everything.

This was kind of a ramble! I don't know if it will make sense to you or not. Oh, I think that I am probably in the same boat as you with the biofeed back. So far, it makes my headaches more severe and hasn't offered any relief.
 
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itmatsb replied to Sillyhatlady's response:
Hi, Go ahead and go see the so-called "pain specialist", but you really need to find another pain specialist NOW, even if you have to get into the car and have someone drive you to another city. Or a neurologist should be able to mostly treat you. That's who I've been seeing for the tremendous relief that I've gotten from SEVERE 24/7 migraines.

And yes, do put in your complaints about the place where you are going to now.

For future reference you said that you have learned to hide your pain. Maybe old patterns are still playing in your behavior to try to hide how bad you really feel which may be affecting the doctor and nurse's behaviors. And maybe you are really showing the medical people your true pain--just for you to consider and if I'm wrong that's good. Be confident in your assertions that you are in constant pain. People believe me or I don't know that they don't believe me. All my 4 neurologists and headache specialist at the University of Michigan all believe me. If you are confident, others will believe you.

With occipital neuralgia and chronic headaches, why isn't anyone giving you nerve block injections which have greatly helped my daily occipital migraines. And why hasn't anyone suggested Botox injections as well?

You mention that you have restless leg syndrome, anxiety and insomnia. Klonopin can treat all three of these. It is addictive, but so what? I've needed to take it for the last 3.5 years to treat a condition called myoclonus which causes major jerking of my body as I get more relaxed. So I take it at night. It has also taken care of my anxiety caused for no reason at all. And it helps me sleep.

I also have fibromyalgia. I take a large dose of Trazodone every night which mostly treats it plus gives me terrific sleep. But I had to start at a low dose which completely put me to sleep. As I as able to increase it, the fibromyalgia got better. I don't think I saw that you had tried it.

BTW, none of the prophylactic meds helped me except for an herbal one, Petadolex, but it is not covered by insurance.

What country do you live in? What kind of insurance do you have? Are you very far from a city? What medical institutions have you been to, to have gotten so little relief from your problems?

Write back so that I can be of more help. I do really care about you.

Sara
 
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Sillyhatlady replied to itmatsb's response:
Hi Sara,

I live in a very rural area in MN. The town I live in has just under 600 people. I lived in GA for 8 years and went to all types of doctors but no one would look at my health issues as a whole and then I would get passed from specialist to specialist and none of them could agree on a treatment.

I had to resign from my job 2 years ago so I moved back to MN. I went to the Mayo Clinic in Rochester and got most of my problems diagnosed but the insurance I had then wouldn't cover any treatments and only covered part of the consultations. I still owe them tons of money. Currently, I am on state insurance because I am unemployed. They are not very good about paying for things that could help. I live with my retired mother and have drained her finances so getting to doctors in the cities isn't an option at this time.

I have been on Klonopin in the past. My primary and specialist don't want me on any meds that are addictive. The pain specialist told me I just needed to learn how to cope. I have been going to psychologists for many years and they have all agreed that I cope very well with my lack of life. I keep journals detailing my pain and how my days go, but the pain specialist wouldn't even look at it. He decided before he even met me that he wasn't going to help with my pain. He is an arrogant SOB!

I truly need better pain control. My blood pressure is extremely high and gets higher as the pain gets worse. I am on 2 meds for BP but it doesn't work when my pain is severe. I had a mild stroke in 2008 due to elevated BP and a blood clot. (I have a blood clotting disorder too) I know doctors are overwhelmed when they see my list of issues that have been compiled during the past 10 years, but that is no excuse for treating me like less of a person~
 
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itmatsb replied to Sillyhatlady's response:
I am so so sorry to hear about your situation. I think that your best bet now is to file complaints. How much worse could your medical treatment be than what it is now?

Be very strong to the pain man that your pain is a 9 out of 10 most of the time. Ask him what the health risks are from repeatedly being injected with cortisone. That you have heard that it causes damage. Look it up on the internet and print off the proof of it. And tell him that the biofeedback has given you no pain relief and what can he give you since it is not working. Also ask why he is not prescribing a daily prophylactic medication to prevent your headaches which are not pain pills?

And what about someone's suggestion to you above, to go to the ER for your pain. By the second or third time that you go, then you could ask for some pain medication. If you ask for it the first time, they will just think that you are a pain pill addict. They can't refuse you from being treated in the ER and cannot collect from you either since you are unemployed.

Have you any medical history of addiction? It seems that the medical people are very stingy about medication with you. Even if you did have addition in the past, they can give you limited amounts of pain pills to prevent it from happening in the future.

I would never ever recommend this to anyone else, but if any of the daily prophylactic meds (meant to prevent the headaches) worked for you in the past, why don't you try to buy them on-line. You might want to search the internet to find out if that may be illegal, but you do need relief.

Also, why doesn't your primary physician send you to some other doctor for medication for your fibromyalgia? Or why doesn't the pain man prescribe anything for that? Ask him for that too.

Good, good luck to you. What a very difficult situation you are in. This is one of the few developed countries that does not offer decent medical care to all of its citizens, but spends about 2 billion a month for its wars. My heart goes out to you. Let me know if I can help you in any other way.

Sara
 
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Sillyhatlady replied to itmatsb's response:
Hey Sara,

I have no medical history of addiction and have researched so much information about the pros and cons of medications, alternative treatments, and everything else that has been written about chronic pain. I just don't think it is ethical to let someone who has so much pain on a daily basis to just "learn to cope" as my pain specialist says..

My appt with him has been canceled due to weather. I spoke with his nurse and explained to her that I cannot continue living this way and I really need him to help me to come up with a better plan, one that includes working with my primary to get better treatment. She spoke with him and he came back with, "I am helping her. I have instructed her to learn biofeedback. That is all she needs."

I asked to talk to his supervisor but lucky me, it is his own practice!! I talked to the office director about how disgusted I was and of course, she was all about him and when she asked if I was looking to take the medication route, I explained that yes, I want to start with the medication route so that I am able to work on the other things. When you have headaches that become more intense with any type of movement, exercise, yoga, etc aren't possible because the pain gets so intense. All she heard was, 'Yes I want to try some medications," and all of a sudden it was now I was a junkie. "I am sure the doctor has chosen the route most benificial for you...blah blah blah."

I am so tired and so fed up! I needed to vent, thank goodness for this. It just ticks me off. If I came in with a broken leg, would he tell me to just learn to cope? If I came in with a huge cut on my head, would he tell me to go see a psychologist? Heck no!!!! But because my pain is invisible, so am I.
 
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itmatsb replied to Sillyhatlady's response:
I think that you need to lodge a complaint to the physician's licensing board as well as to your State insurance agency. Maybe someone will listen to you. It's just plain unconscionable.
 
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Elvie_85 responded:
Friend....you have been dealing with such case for 2 long, your funds are drained out, you are hanging on by the grace of God. I trully believe you should sue the healthcare professionals ( you seem to have all the documentation needed, love you have everything in writting and that is all you need) who have been giving you their so call treatments for malpractice. Then will you be able to get back on your feet and find relief. Everyone deserves a world class healthcare regardless of their situation.

much care, love and blessings
keep us posted <3


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