New to Fibromyalgia

Hi Twiglet,

I am not medically trained. My experiences, I try to help others, that's all, having had Fibro for about 15 years now.

I have TMJ as well. the pain is unbearable. It's a neve pain. That's why the gabapentin or Lyrica can help.

It is trial and error with medications. I know you have previously said you don't want to take medication.

America are way ahead of us, with regard to research into Fibro. And that's where the suggestion that Lyrica is a medication that, can help some people.

Tracer.... That's very interesting about the Thyroid, I shall do some research.

Debs x

Hi Debs,

Just had an email to say you'd posted so came back...

I have TN (trigeminal neuralgia - called the 'suicide disease'!) - electric shocks inside my top and bottom right teeth.

Now I realise TN is not the same as TMJ, but, they can be connected and, as you say it's nerve pain, JUST in case it's of any help - I take B12 supplement and it really helps my TN. My official blood level for B12 was 'in range' (the reference range is SO huge!) but, as B12 is water-soluble and therefore hard to overdose, I took it anyway to get it to the very top of the range; it's really helped. There has been research done to show how B12 helps with nerve sheaths and TN is thought to be degeneration of the TN nerve sheath.

May be worth looking into?

[NB I just posted this message but it had a TMJ Disorders website in it so it's had to go to be approved so I'll post this without the link for now]

Emis moderator comment: I've moved the link to here to save duplicate posts.

Link is www.tmjdisorders.com/trigeminal-neuralgia.aspx

A thyroid problem has nothing to do with fibro and I have had my thyroid checked before. Fibro is not 'curable' it is something to do with pain receptors in the brain not a physical problem with joints etc many folk forget they have other non- related medical problems. In my online group we get lots of I to from America which does seem to be more clued- up than here in UK

Val

Good morning gang.

Debs,I agree that there is nothing like experience, but the only experience you have is your own. I am sorry if my comment upset you but no one can diagnose another person just through their own experience. I am aware that Ihave nerve pain. I welcome advice that I ask for but afraid feel v different if it is just given to me. It is trial and error with medication and if something isn't working for me then as I have said before that I see no point in proceeding with it. It is really difficult for me to take any tablets as I tried to top myselfe by taking an overdose (very big one). Think that should explain a few things. Anyway must go, got fish to feed.

Val, The message you sent me with your support group address has dissapeared, would you re-send it please? I would have a look at the jewels that you have made but dont go anywhere to where any. I think its great when you have hobbies and enjoy them. I took up artwork after finding out I have the F word and have got quite good, the only problem is that you end up with more paintings than wall space. I have done portraits for people and gave them as gifts which is wonderful. I wish I had a studio or even a spare bedroom I could use just for painting because I keep dropping my paint brush and my carpet changes colour.

Twiglet - I have mesaged you again ... so please check if you have it if not then try looking for me on facebook under Val Blench or try getting to my fibro group if you search yahoo groups we have something in the addres like fibromitesR-Us I can't put the full addy here but if not I will see if the moderators have some other way of contacting you if messages here are not working

Val x

Actually who are the moderators here and can I contact you please

Val

Um, I think it is pretty well established that FM can have a lot to do with thyroid and that T3 can help a great many people, as bona fide research has also confirmed. Also, as you have have links with America I'm sure that you'll be aware of Dr John Lowe's work on FM.

I was wrong to use the word cured but, as you'll notice, I did put it in inverted commas - what I should have said is that the pains associated with FM can be ameliorated to the point of not having any.

Anyway, all I can say is that thousands of FM patients are told their thyroid is 'normal', when they're not (the dreaded TSH tests..!) and yet gain complete freedom from pains when they are put on thyroid hormone, especially T3. I am one of them.

I hope all FM sufferers gain relief, in whatever works for them.

Many people do 'research' of some kind, but in America, some people who had been diagnosed with fibro were given MRI brain scans and it was noticed that something showed up there with folks who did have it and non-fibro patients .. it is to do with pain receptors - if someone gets most pain felt in their knees there will be no actual problem in the knee joint ....

Fibro is just one complaint - many folk have others, diabetes, arthritis and thyroid problems it doesn't mean all are linked to fibro and that if you treat one the fibro will disappear.

Both conditions (fibro and thyroid deficiency) share symptoms, including fatigue, exhaustion, depression, brain fog, and varying degrees of muscle and joint pain, which leads some people to believe that fibro is therefore one variation on thyroid dysfunction.

This is one reason why it is important to get diagnosed by a rheumatologist or similar, who is experienced in fibro

Shouold have read about brain scans ... but not in non-fibro patients !

Hi,

I am certainly not trying to diagnose anyone.

And, don't mean to cause any offence to anyone.

Merely making a suggestion as to what it could be and a possible medication that could help.

Until, you've tried something, you can't know if it can help you or not.

And, when you are in such pain, it makes some sence to try.

Many, many people with Fibro, do have other conditions also, which are not related.

I understood this forum, was to give support and try to help each other.

But, I will withdraw if I am causing offence.

I can fully appreciate not wanting to take a load of tablets.

Some of us, have no choice. Without my morpine, I couldn't function at all.

I, too, tried to commit suicide. With a large morphine overdose.

I now have to have a weeks worth of medication, delivered in blister packs.Which shows you what to take and when.

We are only, slightly touching on each others lives on here. And cannot know the ins and outs of each others lives.

I wish I could do some crafts of some description. But I have too much pain in my hands, (can only type with one finger). And for the last 7 months have had eczema on my hands and feet.

My miserable life, has to be spent in bed, only being able to get to the loo and back.

I've had no choice, but to accept, that is the way it is.

And often wonder what the point is. I'm estranged from 3 of my sons and grandchildren because of my bipolar, self harm and suicide attempts

Anyway, good luck to you all. I will investigate all your advice and suggestions.

Debs x

Debs, OMG I have met some hypocondriacs and attention seekers in my time, however i feel that your issues are more serious. I recommend for you to look up munch howsen syndrome, think it could help. It has become unbearable for me to spend any more time conversing with people who know everything about everything yet know nothing about anything. Hope you manage to look after your 4cats, 3dogs and your partridge in a pear tree with all your 10 thousand life threatening ailments.

Debs have you been checked for lupus ?

Twiglet.

I really do not feel you have the right to be so rude to me.

I have a diagnosis, 'for all my ailments', Thankyou. From Specialists.

Many, many people with Fibromyalgia, spend years trying to get a diagnosis. Returning time and time again to their Doctors, with, individual symptoms. And, being made to feel they are hypocondriacs.

Without your suggestion of such, being so.

I think you are out of order.

Val,

About 20 years ago, I was told I had Lupus, as my blood tests showed it.

I eventually, went to the Lupus clinic in London, regularly.

I just can't remember who I saw now.

I had many misscarriages.

Then, my blood tests changed and I was told the Lupus was in remission and I had Fibromyalgia.

After, glandular fever.

I count myself lucky for that.

Some of the symptoms are very similar, but at least Fibro is not damaging or fatal.

Have you been tested for Lupus?

Debs x

Just to add..........

Tracer, that link was very informative. thank you.

That's interesting about the B12.

Never had mine tested.

But as you say, no harm in trying it.

My TMJ was diagnosed by my Dentist. and sent for a MRI.

The pain, does make you want to bash your head against the wall.

Mine affects my temple and ear. Like someone has put a red hot poker in your ear. with an electric shock.

I used to grind my teeth. (Bruxism)

My Dentist made me a double mouth guard, but, I couldn't cope with it, felt like I would 'drown' in my saliva

I do watch what I eat, try not to eat anything too chewy..

Debs. x