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Member Since 02 Jul 2012
Offline Last Active Aug 19 2014 01:58 PM

Posts I've Made

In Topic: Amitryptyline (Elavil, Endep, Levate) For Nerve Pain

25 June 2014 - 06:17 AM

Well possibly made the problem worse, it would be difficult to prove it was her. The thing is, my bone scan (DEXA scan) I had after coeliac diagnosis showed early stages of osteoporosis (although, it took the hospital a year to actually tell me! 😠) I didn't find out until my last visit, when I got an apology for not sending me a copy of the report. I had an MRI scan in 2005 which showed degeneration of the facet joints, so there's nothing I can do about it.

I agree.  That sounds odd. If its that bad she should see a back surgeon.  They can fix things these days.  Some fixes aren't even super invasive.

snapped them into place? I do not know what that means. How is that possible....did she do some damage?

In Topic: Vitamin Levels Ok, Still Exhausted, More Testing

24 June 2014 - 01:06 AM

Giving up dairy products can help with sinus problems. I have been plagued with sinus problems almost all my life. When I was diagnosed with Coeliacs disease a few years ago, I had already given up dairy as I was unable to tolerate it and noticed my sinus problems improved.
Other people I know have also given up diary to improve sinus issues. There's only one way for you to find out and that is to try it and see, as nothing works for everyone.

In Topic: Amitryptyline (Elavil, Endep, Levate) For Nerve Pain

23 June 2014 - 02:47 PM

Yes, many years ago, but my spine is crumbling (I've lost 3 & 3/4 inches in height) and it made it worse as the osteopath snapped my bones into place, instead of manipulating them. That's put me off for life I'm afraid.

There are people with BOTH celiac and Fibro, I am sure. What I am trying to get across to people is that too often, we are diagnosed with : FMS, CFS, IBS, etc, but the symptoms are the same as those of celiac, so people go undiagnosed for celiac disease based on the doctors who DX one thing at a time and symptom-treat it. This is my experience and that of so many celiacs I have met.
Also, you can have muscle and joint pain and not have fibro. I do. Lots of conditions cause muscle pain.
Have you seen a chiropractor, a physical therapist, a massage therapist? Maybe you could get some relief.

In Topic: Amitryptyline (Elavil, Endep, Levate) For Nerve Pain

19 June 2014 - 08:25 AM

I take your point! It will be interesting to see what transpires. I have to admit that I was diagnosed with it in my fifties, although I've suffered with it for much longer. What I'm a bit puzzled by though is, if you have coeliac disease and it causes similar pain, and have cut out all gluten and wheat, why do we still have the pain? Should it not go or at least improve through abstinence? The spasms in my upper back have been alarmingly bad and am terrified of it getting as bad as that again, hence the medication.

Just to be clear: I am not saying FMS does not exist. Of course it is not in anyone's mind. Pain is real.
I am saying that anyone with muscle pain is given this wastebasket diagnosis. If this excess blood vessel discovery is for real, then people who are  presumed to have fibro can now be ruled out as FMS sufferers. 
it's a wonderful diagnostic tool!!
You will notice that one commenter wrote this:
"I sincerely hope this is true and leads to a cure but one question nags me. Presumably those affected would have had this excess of blood vessels all their life, yet of those I know who suffer (luckily I’m not one, and pray I never will be) the majority have been fine until later in life (my next door neighbour, though having osteoporosis since her 50s, didn’t develop fibromyalgia until her 70s). So why haven’t they always suffered from it?[/size]Read more at http://guardianlv.co...st6MavdmX5Ab.99[/size]
This brings me to my original point: [/size]
Because they are probably undiagnosed celiacs that's why--their pain is not coming from fibro, but from celiac damage.[/size]
The vast majority of people being DXed right now....50's and older. [/size]
coincidence? not at all.[/size]

In Topic: Amitryptyline (Elavil, Endep, Levate) For Nerve Pain

19 June 2014 - 07:11 AM

I have nerve pain due to degeneration of the facet joints in my spine and have taken Amitriptyline for years. I didn't think they were doing much good until I was weaned off them to go on something else (I also have fibromyalgia) then I realised that they were working! Warning though, they are possibly not suitable if you have heart problems. I recently had to start taking Amitriptyline again (long story) and as I gradually increased the dose I noticed my heart rate getting faster, so have decreased my dosage while I wait to see my doctor again. They also enhance Levothyroxine if you have a thyroid condition. I also found occasionally that I had to decrease the amount of thyroxine I was taking because of this, and also because my thyroid condition has improved since I came off wheat and gluten. Your doctor will know best though, so take their advice. Amitriptyline won't get rid of nerve pain altogether, but they make it more manageable. Good luck!


Hon, I do not think anyone should hurt themselves by overtaxing their muscles though, Just want to make that clear. :) No need to do extensive walks. Do 10 minute ones...3 times a day. build up  your time. You don't want to overdo it and make them so sore you can't do it the next day. 


What I am saying is that slowly, one can get back to proper exercise...as your muscles heal off gluten.

A good MT can help. 


Healing is not a race, I am afraid and recovery of your muscles is slow. I have had to be very patient,

but I honestly think if no doctors are seeing nerve impingement or entrapment and you have been given the okay to exercise,

then it is in your best interest to go ahead. In my experience,I have witnessed that fibromyalgia is a self-fulfilling prophecy. And many people I know who were told "it's fibro, just live

with it"...did not even have fibro at all. It was celiac. I was headed for a scooter or wheelchair, they claimed..but I said ....absolutely not.!!


Investigate all ways to get your muscles back. No one should believe the fibro dead-end diagnosis.


One other thing...your nerve pain is not from blood glucose issues, is it?  

Hi Irish Heart,

Re: discussion on Fibromyalgia.  Anything can become a self-fulfilling prophecy if you are that way inclined I expect; what worries me is that some doctors don't think it's a real condition (all in the mind), fortunately, there are a lot more that know this isn't true.  My daughter, has just forwarded me a newspaper article, not even knowing I was on this forum today.  I thought you (and others) might find it interesting: