Guaifenesin.

Any tips on what helps you including alternative medicine.

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Guaifenesin.

Postby 123sandra » Mon Sep 19, 2005 6:27 pm

:D
Have/are any of you been on this?
Have/are any of you familiar with Dr Freed ( he works from Wrightington Hospital?)
I am on clinical trials for this at this pres time. I've done the 20-60 injections a wk in my skin, also had the muscle injections done,( Dr Freed stopped them when my muscle 'cracked') and yes they were VERY painful.
Why are we so far behind the rest of the world, treatment wise?
Be glad of any responses.
LOL...Sandra
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Postby Kristine » Wed Sep 21, 2005 12:56 pm

Hi again Sandra,

What are the injections you are having, I have never heard of Guaifenesin being administered in this way, so can't imagine what they are.

Best
Kristine
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Injections!!

Postby Guest » Wed Sep 21, 2005 1:38 pm

Hello Kristine :D
The injections WEREN'T Guai based they were Asprin based!!
I can't remember what the proper name for it was just that it did have Asprin in it. If you are asked to have these done , just a little warning, they hurt like h***. ( don't know if I can say that and don't want to offend you). Whatever it was they were in 2ml viles and he got 1to 3 injections out of it. I had 20 viles in one go, hence the 20 to 60 injections. Having those done made Dr Freed realise that I am not soft and that I can manage to a certain degree the pain, it's like I said, I've had it that long I'm used to it!! I didn't scream (although I felt like it) when having them done but I did have to tell him which ones hurt the most!! He couldn't tell!!
The muscle ones were horrific! On the last lot he did he actually said he wasn't going to do anymore, my muscles 'crunched'. I changed colour!!
No more said!
Look after yourself.
LOL...San
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Postby Kristine » Wed Sep 21, 2005 6:17 pm

Hi Sandra,

I'm sorry but I don't think your good Doc understands the guai protocol at all, if he did he would realise that the Aspirin would block guai's action completely! This has been a very common mistake in the past, we have to avoid salicylates and aspirin is the worst. All this is very hard to understand at first but everyone gets the hang of it in the end.

I'm sorry the injections were so painful for you, did you get any relief at all? I have never had a diagnosis, like most fibros I spent years going to my GP with all my symptoms and getting complete mis-diagnoses, wasn't till I did an internet search that I realised what I had. The thing is, Guaifenesin has no affect on people who don't have fibro, so at least when things start to get better we know for sure we actually have the disease, that and something called mapping. My original maps were covered in lumps and bumps, loads of them around my neck which helped to explain the awful stiff neck I had for many years.

An awful lot of us fibros are hypoglycaemic and I found that I had far less pain if I ate an HG diet, this is available to see at the Docs site, there are 2 diets, one if you need to lose weight and one if you don't.

I babbled on for long enough, don't hesitate to contact me privately if you like Sandra, I'm always willing to help.

Best
Kristine
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Hello Again!

Postby 123sandra » Wed Sep 21, 2005 7:45 pm

:D
It's only me again!
The injections were done and over with a month before the Guai sent in.
The injections were his first option, the Guai was his last!!
I had the tender point test done and 'scored' 17 out of 18.
I got an hours relief from the injections, which to me was worth the 10mins of pain while he was doing them!!
My most painful points are my neck arms shoulders and back (doesn't leave much left!!)
I have a lot of other symptoms that, until I visited a FMS site, I didn't realise were connected to the FMS. So next time I go see him I'll have to tell him.
Please believe me, I didn't just come across a site and decided that this is what I have. I don't like reading about it because I don't want what I've got now!! I don't want to know what could be possible.
It's taken me a long time to give any trust to a Dr. I've had the knock backs like everyone else. Dr Freed doesn't know the problems I've been having lately, but maybe next time I will tell him. He can have another little slice of me!!
You sound very knowledgeable about the condition. I like 'speaking' to you.
Let you get another word in.
LOL
San...x
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Postby Kristine » Wed Sep 21, 2005 9:48 pm

Blimey Sandra, I just typed out a long post and its disappeared :cry:

I have to get off now, so I'll write again in the morning.

HOpe you have a good sleep tonight,

Best

Kristine x
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Stupid computer!!!

Postby 123sandra » Thu Sep 22, 2005 11:21 am

:x
Know what you mean with computer!! Mine seems to be having a fit!!
I can't tell you how many times it's wiped off what I've written!! Only just done it posting a reply back to you!!!
Just wanted to say Good Morning.
What do you do/did for a living? If you don't want to tell me that's ok, I won't be offende. Just being nosey!!
Can't remember the last time I got a good nights sleep! Think it was before the kids came along!!!
Am going to go on the 'other' fms chat site I visit. Will be back on this afternoon, so hopefully I will catch you later.
LOL
San...x
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Location: Lancashire

Hi Sandra

Postby Kristine » Wed Sep 28, 2005 11:01 pm

Hi Sandra,

Sorry I haven't been on here for the past 4 or 5 days, just got so busy with work etc and haven't had a moment to myself.

How are you doing, hope you are feeling OK and not having any pain. :D

Will have to go now, I'm pretty tired and need my bed, too many early morning and late nights.

Chat soon,
Love,
Kristine x
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Guaifenesin

Postby carol » Fri Oct 21, 2005 6:33 pm

Hi I wonder if someone can help, I have been diagnosed with Fybromyalgia and have read the book What your doctor may not have told you about Fybromyalgia and the Fatigue book and read lots of stuff on the diet, which I have started and the total abstination of salyilcates on the skin, hair, teeth etc.

Does anyone have a list of products in this country I could use or what they have used, I don't really want to order from the American sites. IE a good face and body moisture cream, shower gel, soap, shampoo and conditioner and toothpaste, thats all I use really, dont really wear much make up.

Also what should I say to my Doctor about wanting to go on Guaifenesin, at the moment he has me on Dothiepin, 25mg, helps a bit. I really want to try Guai but may have to order from America, however this costs a lot of money, can it be prescribed in this country. And really though I order from America my doctor wouild still need to know I am on it. I am a bit scared really. :shock:

I would really appreciate some help before I order from America.

carol :?:
carol
 

Carol

Postby Kristine » Sat Oct 22, 2005 10:07 pm

Hi Carol,

Yes there is a website that has a list of salicylate free products to use, you can get all the info and also there is a support group for those of us in the UK, it's a real lifeline, particularly in the beginning when you have loads of questions.

As for your Doctor having to be told, why, most of us do this on our own, I don't even have a diagnosis, my drs have been worse than useless, I have had so many mis-diagnoses and there are very few who even consider fibro is a bona fide disease, they say its a waste basket diagnosis.

Do you have anyone to map you, if you live near Peterborough, our most experienced mapper Annie Attewell lives there and is very good, her partner Sally has fibro and they both have a wealth of information to give.

Unfortunately, Guai is not available in the UK anymore, it has to be bought from the US, where it is available over the counter, or from New Zealand, which requires a Drs prescription. We mostly used to use Long Acting Guai, but Dr St Amand has many patients on the Short Acting Guai and they are all doing well, its cheaper too!!

Going on a diet for hypoglycaemia is a good idea, it helps with the pain, it's all to do with insulin apparently, I know that when I stick to it I have no pain, but if I go on a bread binge it comes back with a vengeance. There are 2 versions, the strict for if you need to lose weight and the liberal if you don't, they can be found on the Drs website at:
www.fibromyalgiatreatment.com If you have any questions you can join the support group here too, Claudia Marek, the docs nurse/assistant is a great help, when I first went on guai she answered all my questions and there are others there to help as well. I met Claudia last year at a conference in London, she is amazing, has fibro as do her children, they have all reversed their disease.

The UK site is at http://ukfmsguai.tripod.com/

Carol, feel free to email me privately if you like, I'm always willing to help, I have some spare tubes of fibrosmile toothpaste
if you would like some, we do have a couple of sal free ones here
in the UK we can use though if you prefer.

All the best,

Kristine
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