Conflicting advice - migraine versus fibromyalgia

What do you do, when two doctors give you a completely opposite advice:

one, Neurologist, tells you that you MUST NOT take any OTC painkillers more often thent 2/3 times a week because it will lead to the certain reabounds and chronic head/migraine pain situation - and you believe this is likely

the other, Rheumatologist, tells you that in order to reduce your pain and improve your ability to function which has become extremely difficult due to Fibromyalgia pains, is to use OTC painkillers few times each day, as soon as you need them, in order to relieve the pain - and you are tempted, but still afraid of the dreaded rebounds?

Any sensible solution?

BTW, I did tell the second doctor that I am not supposed to take painkillers becasue it might cause rebounds for my migraine, he was basically suggesting, that this is all up to me what I choose.

Hi...

I have both fibro and chronic daily migraines, and understand your dilemma.

Have you tried Guaifenesen for fibro? This has improved my fibro by approximately 75-80 percent and does not adversely affect my migraines (no rebound). There is a website for this protocol if you are interested: www.fibromyalgiatreatment.com

My neuro has also stressed not taking meds more than twice/week. Meds lose their effectiveness for me, so this is another reason I try not to take them often.

Good luck to you. Having both fibro and migraines is really tough.

Ann

Thank You for your response, Ann,
No I have not heard about it, but it sounds most inetersing.
I am so very happy for you that you have found such a great improvemnt. It sounds fantastic. I am so happy for you.
I have my migraine more under control these days, with the preventative (Neurontin) so now Fibro is my main concern as it makes any functioning very difficult.

I am ceratinly interested in trying G and will as soon as I can find a supply.
Can you tell me what daily dose you take, and if you had any s/e with it.

How soon after starting to take it did you find any improvement?
I would dearly love to travel abrod this summer to visit my family, it is really important for me so it would be wonderful if I could possibly get some relief so I could still make it, but if not, anything is better then this daily impossibility of functioning. I can enjoy very little, these days.

Loking normal and quite healthy nobody knows how debilitating this condition is. It iss hard to explain and I know most people do not belive you when you say that you could not do this, or that...
I never loose hope, so any improvemnt would be such a blessing.
Thank you for taking trouble to reply, I reallly apreciate it
Senna

Senna,

Guai reverses the symptoms of fibro but does not cure it. Therefore, you must continue to take it.

The website and/or the book, What Your Doctor May Not Tell You About Fibromyalgia, will explain how to find your dose. For me, I take 600 mg morning and night. It takes approximately 2 months to reverse each year that you have had FM. So for me, I had FM 12 years when I began the guai, and it took approx 2 years before I started to really notice a difference. It truly has been a miracle for me and many others. There is a discussion on the website, and many have positive stories .

I understand what you mean about travel. I have pretty much limited my air travel to necessary trips since it is so difficult. And you are right...we look fine! It is very hard for others to understand. I have often said that if I had a cast on my leg, people would *get it* right away without any explanation.

I'm happy that your migraines are under control...YAY!! That is a huge victory!

Let me know if I can help you. The guai protocol does take some effort but it is the only thing that I have found that actually works. And who wouldn't want to get rid of fibro???

Ann

Thank you for your encouraging words, Ann - it certainly seems worth trying.
I am not sure how long I had my Fibro since it took few years to get any doctors to believe that there is something wrong - then to get diagniosis - so it was a gradual thing.
The pain got certainly much worse in the last two years, specially this last winter.

I have one serious concern: I get really bad side effects with anything I take so I am trying to limit any medication unless it is absolutely vital.
This is also why I am always reluctant to try any new things.
However, I had a quick look on the net today and there are some concerns about G, some mixed reviews. But on the whole it sounds worth trying.

Did yiu get any s/e when you started?
Sorry I keep asking you all these questions, but I very much appreciate your feedback - I feel I need to try to do something, to reduce the impact of this thing in my life. It ruins everything.

But I hope you are having a good day, and that no migraine is troubling you head, today
Thanks again
Senna

Senna,

I believe that there are very few side effects (none according to some) of guai...I know one person who had one side effect. I have had none.

When I first began taking guai, it does make the fibro worse, but the key to finding your dose is to only make it *tolerably worse*. That just means more pain, aches.

I hope you find this works for you. I am very sensitive, too, to meds, and react in weird ways! I think it may be common in fibro.

I'm happy to answer any questions . I want us that suffer to have better days!!!

Ann

Thank you very much, for your help and your patience, Ann.
This is encouraging. I will try to find a supplier and perhaps is I'll start with a low dose in a hope that this will prevent any bad s/e developing.
Today I am having a bad day (after Easter trip to visit my daughter), but this only reminds me that I need some new solutions soon.
Senna

Senna,

I would strongly encourage you to read the book I referenced before starting on the guai. This is a protocol that includes some things that you need to avoid in order for it to work. Otherwise, you would be wasting your money.

This said, you can buy Mucinex in the store (which is guaifenesen) or I get mine from a pharmacy in CA (cheaper and dye-free).

Ann

I was looking for the book at Amazon uk (I do not live in USA) but they do not have it. I will find the suppliers but today is not the best day for me since my mind gets blurred, when I feel like this. I is a frustration, but nothing new will start again tomorrow.
Senna

http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=What+Your+Doctor+May+Not+Tell+You+About+Fibromyalgia&x=0&y=0

Above is the link to the book at Amazon in the USA....hopefully maybe this will help you to get it in the UK? If not, perhaps I could get it and mail it to you.

I'm sorry that you are not feeling well today. I'll be saying a prayer for you .

Ann

Thank you Ann, you are very kind.
I did look in Amazon uk (I have an account), but they do not have this book at the moment. I will keep checking in case it will become available again,in hope that it is missing only temporary.

I tried to read about taking Gt more, and about salicilytes, and it seems that they need to be eliminated which does not sound too easy. Funny I drink lots of herbal (and mint tea) and I thought this was healthy.

I am taking Nasaids, and also use gels on my neck etc.
Of course the names vary in UK and USA which is a nuissance as we often cannot compare the medicines.
But I am very keen to start on G and will persevere with this.
I appreciate your help very much indeed
Senna

Senna,

I'm sorry that the book is not readily available, but there is a ton of info on the website I gave you. The co-author of the book, Claudia Merek, works in the office of Dr. St. Amand (the other author). Both have fibro, and Claudia is a regular participant on the web board off of the website.

Salicylates can best be thought of as blocking guai. It can seem daunting to eliminate them all. I tried guai in 2002 for 2 months without eliminating them and then quit. After searching for some relief, I finally got really serious about the protocol in 2006.

If I can help you, let me know. There are people from all over the world on the web board, and the UK leaders should be able to help you.

Take care, Ann

Thank you Ann, I am sure I will have more specific questions for you, once I read more about it. I am sure I will be able to get the book.
It is good to know that I have your support, it means a lot. Thank you.
How are you feeling today?
Senna

Senna,

Thanks for asking....not too swell. I had Botox a week ago, and my shoulders and neck are so achy! And the migraines are not any better...ugh. I'm hopeful that it will help soon.

Well, it's a nice day, so I'm going outside to water flowers .

Hope you are better today?

Ann

I am sorry about your pain after Botox. I do hope that this will bring you relief.
I have never have Botoxs, but I had an injetion of steroid and lidocaine in the back of my head last summer and it helped me a lot.

In fact my head is really much better lately and I do not know if it was this, or the fact that I also use Coenzyme Q10 daily, or is it just luck. Whatever it is I just don't care asnd try to make most of it whilst it lasts, fibro permitting.

BTW I was able to order the book and will read it I read some of the website you suggested too. I just worry about all the restrictions, another adaptation to go thorugh after so many others. Peole look at me strangely already. Do you get this?

It is lovely and sunny today, but I feel very, very weak and also expecting my g-children to stay the night - we will cope, we must life goes on.

I hope you enjoy the sun
Senna

Senna,
not all anti-inflammatories cause rebounds, or least they do not trigger migraines.
Tylenol could be a good compromise.

Anti-inflammatories and I've tried many different ones, affect my stomach very badly so I can only use them infrequently.
In fact my neurologist said that a-i can also cause rebounds, so obviously opinions differ.

Whenever I take painkillers of any kind these days, I always try to mix them as much as possible.But thank you for your suggestion Ivy
Senna

Senna,

Absolutely people have thought that I am strange given my restrictions for fibro and migraines. I walk around much of the time with ice on my head (under bandanas...people think I have curlers in my hair!!). So I guess I am used to it by now.

The restrictions for the guai are mostly for cosmetics, lotions, toothpaste, soaps, etc. and not very many for diet except mint and herbal teas as you mentioned. Once you pare down your products to the basics, things become easy. There are a couple of websites from which you can order products that are salicylate-free. And there are lots of lists (which I hope apply to you) of safe products. I decided when going through this process that I didn't need many of the products I was using! Feeling better became much more important.

I'm glad you were able to find the book, and that your head is better!

Ann