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I tried going gluten free for almost a year in an attempt to ease my pain.  It didn't help me.  I am lactose intolerant so I stay away from that mostly.  I still have ice cream on occasion and pay for it. 

 

I'm on a low dose of Tramadol which helps me.  It doesn't take away all of my pain but it takes away enough for me to be able to do things.

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You say you've tried amitriptyline. How much? I've got pain from several different sources. I find that when I increase the amitriptyline to 200 mg/day that I'm able to reduce the amount of oxycodone that I take by about 50%. That doesn't mean that some days aren't worse than others but it really does help. I've had to go upwards of 350 mg at times but I really don't like going that high because of the side effects.  

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Yes I have, and I was skeptical.

 

I was on various medications at various dosages for years, and nothing worked. So a diet helping me with pain & other symptoms??? Are you fucking kidding me??? However I ran out of options. My diet was initially gluten free. And it is not as easy as it sounds in any way/shape/form. For the first, god...3 months?? It did very little except take away my IBS symptoms. After that it took away my brain fog, muscle pain, anxiety, joint pain & and my chronic tiredness.

 

Being gluten free after about 6 months I found out that caffeine, dairy & processed foods (mostly 'fake' sugar) also made me very tired, sick & in pain.

 

Granted, fibro is not my only symptom. I am diagnosed as gluten sensitive and getting tested for celiac disease.

 

I now realize that diet & exercise (basically strict health living) is a much larger aspect that I have ever imagined as a young teenager on over 5 psychotropic's for severe MI & health issues. Granted, I strongly believe in medications & taking them as prescribed when they are needed. But when other options are available, I try to take them.

 

__________________________________________________________________________________________________________________________________

 

Also, I want to add that after being GF for a year and having to get back on it for several moths to be tested for Autoimmune Disease my Fibromyalgia symptoms are the worst it has ever been (including severe pressure points pain). As well, it can take a couple of weeks to 7 months to see improvement after cutting out gluten (depending on what it does to your body & brain, as well how sensitive/intolerant you are to it).

Edited by the girl
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  Are narcotics a reasonable treatment for fibro when nothing else has worked?  Are they as big and bad and scary as they're made out to be?  I'm not too keen on taking them either, but this is getting ridiculous.

IMO yes, but I'm not the Dr writing the prescription....

 

Codeine is about the only thing that takes away my pain - I usually get 3 to 6 hours relief from 60mg and although it is only a fairly weak opiate  I've never needed to take the maximum dose I'm prescribed (240mg a day), and I've not needed to increase the dosage over the last 3 years either. Some people will get addicted or tolerant to it but if used sensibly the risks are minimal.  

 

I also found Tramadol 50mg to be effective but it  made me very *high* and made my heart race, so switched to the codeine. 

 

I've tried a couple of tricyclics which didn't help much with pain, although the amitriptyline helped with sleep at 100mg. Effexor is evil and my gdoc wouldn't prescribe Gabapentin or Pregabalin. 

 

Why do you only get 2 doses a week?  If you have chronic pain you need treatment........ 

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 it can take a couple of weeks to 7 months to see improvement after cutting out gluten (depending on what it does to your body & brain, as well how sensitive/intolerant you are to it).

 

 

the difficulty for me is that I really like gluten items---bread, pastas made with real wheat, cereal, cookies.  And the gluten free shit is expensive and just gross.  So convincing myself to cut out food that I like for something that might improve in 7 months (I have even heard a year or more from some people) is just plain impossible.  I like the idea of a non-med solution, I just don't believe it's doable for me.

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I tried going off wheat, but it didn't do anything.  Granted I only tried it for 10 days, but after the 10 days I ate a bunch of wheat and nothing got worse either.  I upped my Effexor and that seems to have helped a tiny bit.

 

 

 

Why do you only get 2 doses a week?  If you have chronic pain you need treatment........ 

 

 

My doctor is really hesitant to prescribe anything potentially addictive.  When I asked to switch from Ativan (which I had been on for 5 years with no problem) to Valium she looked at me like I was asking for cocaine.  I had to have a panic attack in her office for her to take my request seriously, and I had to convince her to give me the small amount of codeine I do get.  I have no history of addiction at all; I don't even drink.

 

It's not even that I want a stronger opiate, I just want to be able to take it more often.  Small amounts of codeine (30 to 60mg) are enough to get me to a point where I can do the basics, like get something to eat and shower.  I can even work on projects, go out and do fun things.  Without it, when I'm having a really bad time with the pain, it's consumes me and the thought of eating or showering or drinking water don't even cross my mind.  I end up eating very little or not at all, I go way too long without showering.  I've explained this to her and she just doesn't seem to take it into account.

 

I'm only 28.  I have a life to live that's just wasting away.

 

Is it unreasonable for me to want to be treated with narcotics?  I have tried everything else there is to try and I've given it a fair trial.  I'm not functioning very well.  I'm really not sure how to talk to my doctor about it.

Well that seems a bit retarded since both Ativan and Valium are benzos so both potentially 'addictive' - most likely you were physically dependent on the ativan after 5 years anyway.

 

It is absolutely NOT unreasonable for you to want proper pain relief and if that means being treated with narcotics then so be it. You have no history of addiction either so I don't understand why you are not being given proper pain relief. 

 

I'm 27 and I have MPS, which is similar to Fibro. I find the most effective pain relief is codeine - here in the UK it is known as co-codamol (paracetamol combined with codeine).  60mg of codeine gives me a good few hours relief.   I'm prescribed up to 4 doses or 240mg of codeine per day but I have never needed to take the full dose. I average around 2 doses per day and have NOT needed to escalate the doses over the last 3 years, nor do I feel myself reaching for painkillers to get 'high' or for any other reason than to relieve my muscle pain.

 

I also found tramadol / ultram to be highly effective, I was allowed 50mg upto 8 per day but I never, ever needed that much.  Some doctors may prefer to prescribe it as it is considered less addictive*.  I only switched from tramadol to codeine because of some side effects.  Also tramadol at high doses may not be compatible with certain antidepressants as it acts a bit like an SNRI on serotonin. 

 

I also use amitriptyline to help me sleep (supposed to help pain as well but it doesn't) and my doctor has mentioned gabapentin or lyrica as an option too but I'm not sure, they sound potentially more harmful than normal pain killers. 

 

To me it sounds like you need a new doctor who understands the difference between physical dependence and addiction...... anyone in chronic pain is going to get 'addicted' to their pain meds because they can't function properly without them.  You need a doctor who is willing to prescribe adequate pain relief...... codeine is fairly weak too, it isn't like you are asking for morphine, fentanyl or something insane. 

 

*(I would question this as it has a nasty withdrawal syndrome just like an SSRI)

Edited by crazyguy
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It always surprises me when I read that a Pdoc is prescribing pain medication for chronic pain. Treating chronic pain is best served by a treatment team--a "pain doctor", a physical therapist, a occupational therapist, a nutritionist, a mental health counselor, etc..

 

In most areas of the US there are pain clinics that specialize in the treatment and alleviation of chronic pain. Some clinics are _better_ than others, but most are multi-discipinarian and have the resources to create individual pain control/reduction therapies that include adequate pain meds.

 

As much as I respect and appreciate my Pdoc, I would not want to be dependent on him prescribing treatment for my chronic pain.

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Oh, it's not my pdoc, it's my GP.  I should have specified that.  I'm in Canada and it takes forever to get into any kind of specialist.  I'm the wait lists for 2 pain clinics, but it can take a year or basically who knows how long to get into them, even though I've specified on my applications that I occasionally have suicidal thoughts because of the pain.  I saw a rheumatologist whom is who diagnosed me in the first place, but specialists around here see you a couple times and discharge you, and then you have to go through the whole waiting process again, which is 8 months for a rheumatologist.

 

Sounds like your situation is similar to mine as I'm also treated by my GP.  Went to see a specialist at the pain clinic once and effectively all he did was give me a diagnosis label* for my pain, everything else he mentioned I was already doing or already knew about.... discharged after 1 visit.  

 

Getting to see a specialist here is very difficult, especially in mental health. I've not seen a pdoc since 2007 and that was only one appointment........  have to rely on the GP to try different meds for both mental and physical health. 

 

*some ignorant fools  doctors would argue MPS or Fibromyalgia is not even a proper diagnosis, but more of a description of the problem.  

Edited by crazyguy
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