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[Olivia77]

Hi all I don't post often but I watched a YouTube programme on the dreded F and they are now seeing that people with and without F under MIR actually show different brain activity and also different brain chemicals we have too much of one but none of another that tell the brain to stop sending pain messages as it's ok!. There are also differences in spinal fluid so they are working on us so we do exist . Olivia

[desquinn Partner Volunteer FMAUK Trustee]

This sounds like the work or holman and Wood and that of Daniel Clauw. The spinal fluid I think would be the substance P that was one of the earliest detected markers. One of the original papers can be found here: ncbi.nlm.nih.gov/pubmed/752...

Research is happening all the time and we will see changes in knowledge and treatment as a result.

[RayB in reply to desquinn]

Sooner the better,,,,,,, but the fact remains that there is pathology!

[Olivia77 in reply to RayB]

Yes I saw the spinal fluid test not a test I would be up for thanks

[desquinn Partner Volunteer FMAUK Trustee in reply to Olivia77]

the spinal fluid / substance p is like the other observed markers. They are not independently representative of fibro as can be caused by other things. So no test yet but as RayB says it is building up the pathology and this helps research further.

[RayB in reply to desquinn]

des there are many examples of pathology not being conclusive in many conditions, yet it is used, and in taking that pathology with signs and symptoms they arrive at a conclusive diagnosis.

Fibro paitents seem to be getting held to a different set of standards and this has to end.

Ray

[desquinn Partner Volunteer FMAUK Trustee in reply to RayB]

I agree and patient presentation and history is used but as far as I am aware we do not have a systematic approach at present here or anywhere else in the world that is correct to a high enough degree.

But along with the ACR criteria and modern approaches they are improving things. We can wish it to be better than it is but unfortunately it is not ..... yet.

[RayB in reply to Olivia77]

Spinal tap is not a pleasant expriance but if it's a sure way of diagniosing fibro it would cut out alot of the abuse people are suffering at present and that would be a good thing.

[desquinn Partner Volunteer FMAUK Trustee in reply to RayB]

its is not conclusive and perhaps not worth the risk. The indicative nature does not make it worthwhile. Simplistic analogy would be a runny nose being indicative of a cold but allergy and many other things could cause it.

[RayB in reply to desquinn]

As I said are many examples of pathology not being conclusive in many conditions, yet it is used, and in taking that pathology with signs and symptoms they arrive at a conclusive diagnosis. HLA-B27 being just one example of this!

[desquinn Partner Volunteer FMAUK Trustee in reply to RayB]

Ray I am agreeing with you but with fibro at present this is not possible.

Just like with AS 9 out of 10 have the HLA-B27 gene but about 8 in every 100 people have the HLA-B27 gene, but most do not have AS. Its more of a risk factor and ironically AS is a risk factor for fibro as you are 20% more likely to have fibro if you have AS. (Think the number is right from memory)

[KnackeredKaty in reply to desquinn]

AS? Are you talking about ankylosing spondylitis?

[desquinn Partner Volunteer FMAUK Trustee in reply to KnackeredKaty]

yes

[KnackeredKaty in reply to desquinn]

Thank you

[Olivia77 in reply to RayB]

I was just heartened that they were doing something it's all America as far as I could see but slowly we may get some answers

[desquinn Partner Volunteer FMAUK Trustee in reply to Olivia77]

research does not have boundaries and there is research going on in within the UK. Couple of things with unis near london and the PACT project being run from Aberdeen are just a couple.

[Malwimmy27 in reply to Olivia77]

I'm with you on this. Great that they can carry out these tests. I'm not brave enough to have my spinal fluid tested.

[Olivia77 in reply to Malwimmy27]

Hi yes not for me avoid the Docs as much as I can too 🤭

[bobbybobb in reply to desquinn]

I just read that article. Wouldn't blocking the SP stop the pain.

[desquinn Partner Volunteer FMAUK Trustee in reply to bobbybobb]

substance p is only part of it. But totally blocking pain is not the objective either as pain is good for us. If you watch videos by lorimer moseley you can get a bit more on pain processing.

[bobbybobb in reply to desquinn]

thanks, I'll take a look. Maybe what I meant was finding something to reduce the SP levels down to normal, then we mightn't have constant all over general pain. That would stop for us.

[desquinn Partner Volunteer FMAUK Trustee in reply to bobbybobb]

the action of substance p has been known about for a long while. I think this is one of the commonalities with the naked mole rat and why some pain researchers were looking at that.

[bobbybobb in reply to desquinn]

Yes, I always wonder why answers come years and years later and then a breakthrough years and years later after that and then possible trials for treatment and then human trials, you see were I'm going with this. I'm sure the scientist do their best to work as quickly as possible but I wish their brainwaves worked as fast as my broadband.

[desquinn Partner Volunteer FMAUK Trustee in reply to bobbybobb]

for every breakthrough there are thousands of dead ends.

[Gjkas in reply to desquinn]

And Bodies, worse luck.

The way things are going, we are going to be one of them. 💀💀💀🧚‍♀️🧚‍♀️🧚‍♂️🌷.

Rotten way to think, i know. But that's just how I feel. .

Had enough of the lot of it. GOODNIGHT GODBLESS EVERYONE 🤔.Gjkas

[KnackeredKaty in reply to bobbybobb]

🤣🤣🥰

[Patches12]

I asked for an mri doc said no x

[60Chrissy]

Thanks for sharing info. Dr Rodger Murphree has written a booked called

“Treating and beating Fibromyalgia and chronic fatigue syndrome “ Amazon about £18. He states the same- “P” substance (to do with pain threshold/pain messages) when you have enough serotonin this blocks the “P” substance. Low serotonin then the “P” substance out of control. He recommends non addictive plant base “5 HTP” Holland n Barrett about £16 which boosts your serotonin and melatonin. Hope this helps x

[Plumcake in reply to 60Chrissy]

I took 5 HTP for ages, no noticeable improvement in my sleep at all which is why I bought it

[Hidden in reply to 60Chrissy]

I have taken 5htp in consultation with my GP for about 18 months. I find that my moods are often more stable and overall I sleep better but not every night. I do take it if I am feeling anxious and it does help me to calm down.

I can't remember where I read it (as I would like to reference it) but i have this idea that if you are not lacking or are making plenty of seratonin then 5htp won't help much as it is not the cause. I take 100 mg in the evening and only occasionally during the day as it takes away my apetite.

I think its the same as why amitriptyline only works for a small percentage of people with Fm and nerve pain. (My rheumatologist explained this to me after confirming the Fm diagnosis made by my neurologist (they wanted a second opinion and also I have some autoimmune issues), as I was extremely confused by my diagnosis. He actually took the time to explain what it is, how they can help and where the research is up to )

I must point out that I live in Australia where things run very differently than other countries.

[Olivia77 in reply to Hidden]

Hi thanks for that I am going to try 5hpt I do take Amitriptyline and I was wondering if I could take it together. I must say I try to avoid going to docs . You seemed to have a good health service in Australia the last time I had an appointment with a rumatolagist he said " I don't think you have it" then he said " oh you mite have it " then he grabbed my knee I nearly jumped out of the chair then he said"yes I think you have it " a very high tec diagnosis 🤔 I am off to the shops in a ditch if it's ok I will let you know how I go London marathon here I come Olivia

[Hidden in reply to Olivia77]

Do you have a GP? I checked with mine before taking. I also do not take amitriptyline and there seems to be mixed ideas regarding their use together. I know we are prescribed a small dose but would definitely suggest checking with your Dr who,knows what meds you are taking.

If you do go ahead then,givenit some time to work

[Olivia77 in reply to Hidden]

Hi yes I will thanks

[Gjkas in reply to Olivia77]

Hi Olivia, i used to take Amitriptyline about 15 years ago because I had severe nerve damage in my foot because of an operation that went wrong. They are a real good painkiller for anything like that.

But i can't take them now to help ease the Fibromyalgia Pain because I have a Bad Heart Problem.

So if you are thinking of trying anything like this be careful.

If you have a Heart Problem they can be dangerous.

Take Care 👈 Gjkas.

[Olivia77 in reply to Gjkas]

Hi I have taken Amitriptyline for years with tramadol I used to take an Aintinflamatory but I had a kidney removed so they wouldn't let me take them any more . We are all a bunch hurting all over with bits dropping off thank for your advice but some days you would try anything all the best Olivia

[Gjkas in reply to Olivia77]

Yeah Olivia,

When you're hurting everywhere all the time you'll try just about anything.

I have, ive had Depo Steroid Injections in top and bottom of my spine. Had Acupuncture, tried smoking Marijuana ,just made me feel sick. Have had C.B.D OIL ,i order it from PURE KANA in Canada. It's expensive, but you know that you're getting the best stuff.

My G.P knows about the C.B.D OIL that I'm taking from time to time. She don't mind because she knows PUREKANA and she said, yeah okay.

Ive even tried some of the cake with it in, but I don't much like it.

My Neighbour makes it. Apparently it helps her Arthritis, but she doesn't have Fibromyalgia.

That's the BITCH, OH YEAH.

We are a right old bunch.

Oh I wish that there was something out there to help us. 🤞

Anyway, you take care Hun.

Gjkas

[Olivia77 in reply to Gjkas]

Hi I have cystitis on my spine and that treatment is xrays the back find the cyst and injections so not going there. I have just started the 5htp so trying it one a day see how I go . I tried the C.B.D.oil I got mine from Holland and Barrat probably didn't take it long enough to make a judgment I did try cannabis my dog and cat loved it I have some good photos of my spaced out cat she was very old I think it helpt her but it just made me sleep so the search is still on for relef so if you find it we will all still be here o🍻 Olivia

[Olivia77]

Thank for that I have tried hemp oil but that just tasted bad I will give this a go thanks I posted because it's nice to know something is being done and we are not forgotten and we are real 🤞

[Julietj4537]

Thanks I'll take a look.

[Plumcake]

What does MIR mean please?

[Olivia77]

Hi it's the kit that you go through the tube and it takes very fast pics of your body like slices and when it looks at your head it can see activity in the form of colour not sure if you are injected with something to make it show upI hope this helps Olivia

[Gjkas in reply to Olivia77]

Hi Olivia,

Ive had this scan done and they put a cannula in the back of your hand, attached to a tube that they use to put a Contrast Dye through as you go through the machine.

It doesn't hurt, just makes you feel sort of warm. Also makes you feel like you're weeing yourself, but you don't.

They warn you about the effects before you go through the machine. But they are nothing to worry about.

But when the Neurologist came back to the ward to see me the following day, he said that theres nothing to worry about.

No Nasty Tumours or anything like that.

But as he turned around to go to the other Patient the young Doctor that was with him said, ( BUT WE DID FIND 2 SMALL ).but that was all she said because the Neurologist heard her and said to her, ( NO THATS ALRIGHT ) .

I didn't see that young Doctor again.

Ive asked my G.P about the results and she said that theres nothing coming up on her Computer about anything like that.

I'm just as wise as ever . I know for a fact that Doctors don't tell you everything because I used to work in our Local Hospital, both on the Ward and then on Theatre Recovery Ward .

I'm not saying that they lie.

BUT THEY DON'T TELL YOU EVERYTHING 🤔.Gjkas

[oldgrumps in reply to Gjkas]

Agreed, I have been put on Mirtazapine anybody know it?

[desquinn Partner Volunteer FMAUK Trustee in reply to oldgrumps]

some previous conversations on it - healthunlocked.com/search/p...

[Olivia77 in reply to Gjkas]

Hi I try to keep out of the Doctor hands as much as possible I sure there is allsorts going on under the tramadol but as long I stay about the same I just keep going stay well o