Fibromyalgia Research

[Pipilifie]

Hi,

I have had fibromyalgia for about 5 years now. It's been an awful slow decline of constant pain particularly in my neck and back and debilitating fatigue.

I have been on a mixture of meds which has helped my quality of life considerably, one of them is Morphine. Every single medical person I see bar my GP gives me the same speal about coming off the Morphine , I'm not stupid and know exactly why they want me to come off it, but when I ask how I will control my pain levels and have any quality of life they don't have any answers for me. I've tried so many different medications and this was the combination that works.

Before I was on Morphine I was bedridden and thought seriously about ending my life. I have children and am married. My husband had to do everything and I couldn't look after my children so felt completely useless and had nothing to offer

My quality of life is still crap. I was let go from an office job because of my memory problems impacting my workload. I wrote everything down, but it still affected me and refused to make reasonable adjustments.After this it severely knocked my confidence in being able to retain a job. I also struggle with finding the right words when I'm tired and struggle with holding a conversation. It's probably self confidence but I worry I sound really stupid in conversations, lots of erms and you knows when speaking, while I try and remember the right words to say what I want to say.

I've been to the pain clinic but it wasn't at all what the GP said it was. The first person I saw made me want to run under a bus. He said It wouldn't ever get better which I knew but was just so negative, I felt awful then said he'd refer me for pain management but it only has a 40% success rate. When I went for my appointment I couldn't do the classes as I don't drive . Public transport is awful near me and doesn't go anywhere near the clinic. Was too expensive to get to by taxi due to distance plus it was a four day course so added all up was too much financially. I did see someone who saw me and told me to steadily increase my activity levels and not over do it. Which I constantly failed at as something would inevitably come up like school runs or having visitors or just wanting a day out. It always just ends up with me having a flair up. Now I just rest when I can and do the things that are important and acknowledge I'll just have to put up with a flair up

I have lots of help from husband who has his own health issues. He even has to help me in and out the bath which is just awful.

I have been following fibromyalgia studies and the one between Liverpool uni and one of the London unis. What interested me about this study is that it suggested fibromyalgia isn't the brain sending pain signals when the body isn't in pain ,but could be an immune disorder. This will probably make a lot of sense to people with this condition who may already have other immune disorders. I myself when being looked at for potential lupus was told I had markers for possibly developing an immune disorder in the future.

I know these studies take years but I feel hopeful for the first time that there could possibly be an actual treatment for people with this condition.

My question is after this long thread ( thankyou for sticking by me so far) what are people's thoughts on this study?
Has anybody heard of any other studies of interest? Anybody struggling like me or tried any treatments which worked for them? Let me know.

More eloquently put but yes, i attended monthly zoom meeting held by the pain association and found them really great.

All pain is generated by the brain whether you break your arm or have migraines. It's quite complex to understand and can make you feel quite defensive as if someone is saying it's not real. All pain is real. But yes all pain comes from the brain.

@Nat6999 there is an overwhelming genetic connection between ND ( autism ADHD) and hyper mobility or Ehlers Danlos Syndrome. This is really evident on multiple health groups I am part of and have been for years.
What we are seeing is that many many of us with EDS are being diagnosed with things like ME or fibromyalgia and much more.
Most doctors will have no clue. We sadly know a great deal more than the medical profession on EDS and the co morbidities

I think what often happens is through use of language, professionals will often suggest that the problem is that of function. By that, the suggestion is that you just have a bit of a sensitive brain. There will be no consideration to the possibility it's a direct autoimmune attack / inflammatory response which would require quite a different approach, treatment etc.
For example, you'd offer a patient with MS more than positive thinking and a discussion regards their childhood trauma.

They try to discuss childhood trauma at the pain clinic?? 😮😮

@RaiseYourSkinnyFists 🤣 I hope not. Yet, I wouldn't actually be surprised.
Apologies, I confess I'm ranting a tad.
I know many of us have encountered the ' it's all in your head , let's consider your childhood trauma ' spiel on our difficult journey to diagnosis.

I've been using the curable app, and a big part of that is writing about your childhood traumas because trauma can have an impact on pain and how you feel it.

I know it can upset some people who look at these kinds of questions as being dismissive, but pain really does have a huge brain connection.

@MonCoeur I agree that emotional upset and stress can impact pain. There's definitely a place for that somewhere.

Yes, where I don't agree with it is when it turns into "it's all in your head so we can't offer you any pain relief" which is definitely something I've experienced in the past.

There are some amazing storied of people who've used therapy and meditation techniques to better control their pain, but it doesn't work for everyone, and often it only works in conjunction with pharmaceutical pain relief.

Yeah I really hope not. It's been several months since I was referred but maybe that's a good thing. I have absolutely no interest in ascribing the pain I'm in to trauma or any other kind of mental disturbance.

I have observed that stress makes me more vulnerable to a flare up. I don't believe that stress alone caused my illness or my symptoms, however.

I've just read the linked study. They are talking about a small fibre sensory neuropathy or a ganglionopathy wherein sensory nerves are attacked by the immune system. I do urge you to look up Sjogrens and the neurological manifestations. It's the leading autoimmune cause of this.

In the USA people are treated with IVIG. We will never successfully access this in the UK as it's in low supply and expensive. Plus with a fibromyalgia diagnosis and no proof, there's no chance.

I paid to have a biopsy of my skin which demonstrated that small fibre nerves actually were being destroyed. I'm still suffering immensely though unfortunately so knowing the exact cause hasn't been much help .

I always says this on these threads but have you been screened for POTS and/or hypermobility? I have hypermobile EDS and the rheumatologist who diagnosed me with that also (mis)diagnosed me with Fibromyalgia. It took a decade of me steadily getting worse (severe fatigue/brain fog was the worst symptom but also pain and other things) and becoming almost housebound before finally seeing a cardiologist who diagnosed me with POTS. I'm a couple of years into treatment now and it's very slow going but I am finally starting to get my life back.

Maybe you don't have POTS or hEDS but I would strongly recommend getting checked out as POTS is very treatable.

It was mentioned at some point that I had hypo mobility in my knees. The GP thought I had lupus so I had an expensive trip to a private rheumatologist as I didn't want to wait on a huge waiting list to find out. This was all that was said they have tested me for a number of immune disorders but can't remember what.

I'm always secretly hoping they'll find a real cause for what I'm going through. As if you have fibromyalgia you are pretty much just left to it. They give you drugs then tell you to come off them even when they help it's awful.

So pleased for you that you have hope now of getting better or at least having an increased quality of life.

Hey op I read a few years ago about research being done into fibromyalgia being an autoimmune disorder. I think the study I read about was testing mice or rats in some way. I was really excited to be given a 'cure' one day. I hope they figure out it, if it is the case.

It's a minefield. Everyone has so many different variations of what worked for them, or what their Fibro turned out to actually be instead.

I'm a personal believer in all types of therapy being good for health and the body healing itself overall. Whether that be a full recovery or partial and my fibro has gotten better when I'm exercising, doing yoga and eating right, but after a big flare up I'm always cautious about getting back into it, especially as eating right involves standing up cooking.

Oh and I take zero meds apart from the odd bit of cbd cream on bad days, and I get plenty of forgetfulness and brain fog. I was talking about an ice cream van and couldnt remember the word for ice cream van l, the other day. The person I was talking to must have thought I was mad when I pointed to it said, what's that called again.

@Pipilifie I would definitely read up on POTS then. You can screen for it yourself at home (google poor man's tilt test). It won't be considered diagnostic but it'll tell you whether it's worth pursuing a cardiology referral. Good luck!

This is a very interesting thread. @RaiseYourSkinnyFists I will indeed come back & let you know about medical cannabis. My appointment yesterday was cancelled and rebooked! @Tittat50 I'm sorry you have SFN. I also have Sjogrens supposedly mild (Ro and La +), hEds, orthostatic hypotension & fibromyalgia. Fibro was the neurologists suggestion and rheumatologist just did a few pokes & said "hmmm, an element of that", then dxd it. I've had EMGs and nerve conduction tests for neuropathy, just showed my nerves were good but as I understand these won't pick up SFN. I tried to persuade the neurologist to order a punch biopsy but no dice. She compromised with a thermal threshold test at Charing Cross hospital which showed my nerves were fine. I'm now considering paying privately for a punch biopsy either at Kings or The London Clinic. I think you might be onto something with some fibro sufferers actually having undiagnosed SFN. I wonder if undx'd diabetic too plus some autoimmune diseases like Sjogrens and RA can be seronegative so sufferers can't even get diagnosed properly. May I ask what it cost for your biopsy? There are QSart and TS-HDS tests too but I don't think the latter is available in the UK. Yes, no way of having ivig in the UK unless paying yourself. My friend only got it due to being 90% paralyzed with CIDP (now able to walk). I wonder if having it privately overseas might be more affordable? My friend with fibro in remission is an acupuncturist, mostly treating fibro and said a large proportion of her clients have had trauma & historical abuse.

Thank you!

You got the poke and a diagnosis too? That's interesting. I find it odd that it's apparently all they need for a diagnosis. If he'd asked, I have had issues with fainting spells in my life and I'm also very flexible. I'm in my forties and I can easily hook my knee over my shoulder and things like that. It might be nothing, but I'd have thought that he'd have wanted to ask about flexibility.

I've got my next appointment with him later this month. I'm not sure what he's going to say. I'm thinking about pushing back on the fibromyalgia diagnosis but not made a decision on that yet.

At the risk of sounding like a broken record, you definitely need to be looking into POTS and hEDS with a history of hypermobility and fainting. POTS is treatable (hEDS isn't) and it really upsets me to think of how many people (mostly women) are going through life suffering due to lack of correct diagnosis. My cardiologist believes that a large proportion of ME/CFS/Fibromyalgia cases are actually undiagnosed POTS (so this isn't just my theory!).

@CherryRipe1 yes HEDS here too. I think our original problem is HEDS, then because of that we end up with these horrible autoimmune conditions. I'm seronegative Sjogrens. Very distressing road to diagnosis. I imagine many people told fibromyalgia have HEDS or both HEDS and autoimmunity like us.

I don't know if it's ok to name here but until told otherwise.....

In approx 2015 I went to Kings College London and paid approximately £250 for a skin biopsy at 2 sites and the other testing of thermal thresholds or something like that. I am trying to recall the doctor's name who did it. It was carried out by the neurophysiology department ( private wing of their NHS service). No one else would do this for me and instead gaslit me severely. Paying was the only choice. ( I'm single mum now too sick to work so used all my savings).

Sjogrens and ' fibro' can have a huge impact on the autonomic nervous system causing all sorts of prob so in 2017 I saw Professor Matthias in London who carried out detailed testing ( approx £1500). Diagnosed POTS, autonomic dysfunction and confirmed HEDS again.

More recently, being sick with little income I asked if anyone could support me with all this neuro stuff ( mines severe now) - there's no one.

I saw a neuro specialist in London ,Dr Rudonovik privately a year ago who would do a repeat sfn biopsy at a cost of £2000! Of course I declined. What's the point, I can feel my nerves are obliterated and I don't have £2k.

I have seen a decent rheumatologist in Swindon who is the leading rheum ref Sjogrens. Unfortunately our choices for treatments are limited. Nothing is working for me. Mine is severe.

However, they do actually have Sjogrens sufferers who are blood positive like you engaged in trialling new biologic medications ATM specifically designed for Sjogrens. The hope is, you target Sjogrens, you may help manage the awful neuro manifestations.

Some believe ( in USA where they're more knowledge) that Sjogrens is one of the most common autoimmune diseases there is. It is however massively under diagnosed as many have no evidence in blood like me. This would there for potentially explain multiple cases of people told fibromyalgia because their doctor hasn't even heard of Sjogrens and what it can do let alone realise you can have it and also have normal bloods.

Hope that's of some help.

Oh no, I really appreciate it! I'll have a good long read about them, definitely. I've had a quick Google of POTS and I recognise a lot of the symptoms. It's extremely common for me to get dizzy when standing. I often can't see for a moment because of the head rush.

I was diagnosed with Fibromyalgia a year ago, and I think my pain levels don't sound as bad as yours, although I was crying in pain some days, so you have my sympathies.

My doctor suggested amitriptyline which I took for about eight months, constantly increasing the dose. It didn't do anything for me.

It is difficult to narrow down what caused the improvement I've had in the last six months as my doctor transferred me to duloxetine, but I also started applying weekly B12 patches as well as taking a number of other supplements and started Mounjaro injections as it was impossible to exercise whilst in pain and I had gained so much weight in the last few years.

I'm feeling much better now, I might put some of the improvements in back pain down to weight loss but that won't account for the eye watering neck pain that would leave me sobbing at my desk. I do think the duloxetine is doing something and I can at least walk without having to stop every 20 paces because of the pain.

Slight thread derail as I realise this is about the study, sorry. I hope you find something that gives you some relief soon.

@RaiseYourSkinnyFists anything that impacts the small fibre nerves can impact the flow of blood up to the Head and cause symptoms which could lead to a diagnosis of POTS.
Alot of the issues that people diagnosed fibromyalgia report actually sound very much like a problem with these nerves because they cause pain, they impact blood flow, they can make your heart race, cause stomach problems, make you dizzy, cause real physiological anxiety and much more.

HEDS can also impact this in a different way to say an autoimmune attack ( Sjogrens).

There is a huge reluctance to diagnose EDS. I believe that there is such a huge lack of knowledge and they don't know how to deal with it so it's common to be dismissed. I ended up seeing the country leading authority on it ( now retired) and he diagnosed.

As EDS is a genetic condition ( defective Collagen), there isn't a treatment as such. But it's good to know I believe.

I have had it for 20 years, started shortly after a caesarean and for years I didn’t know what the hell was happening. Eventually diagnosed by a consultant who also poked me a bit on the back and shoulders, I am sceptical because I think it’s related to childbirth and something happened there. I have had every treatment and med under the sun. A lymphatic drainage nurse told me she wondered if it was related to pregnancy and lack of lymphatic drainage in one’s body after the caesarean.
Anyway, I have just lost some weight and feel a bit better - all the meds, especially the amitripline made me gain a lot and made my pain and stiffness worse. But this is just today - I could change tomorrow.

My drs surgery is very bad atm and they’re not interested, just repeat scripts…
so I intend on losing more weight and swimming & yoga. It’s such a pain in the arse because I’ve spent 20 odd years waking up every morning feeling like I’ve been battered and in an army assault course & that my quality of life has been a bit shit for so long.

@Sampler every health problem I have came on ferociously after I had my child. Significant autoimmune attack after about 6 months of delivery of my little one.
The more likely explanation is that the pregnancy triggered something in you from an Autoimmune perspective. It's incredibly common for women to develop or notice autoimmune conditions at key moments where we undergo a great deal of physical change ( post birth).
During pregnancy, Autoimmune conditions are usually very calm and people feel great because the body naturally calms right down to make sure the immune system doesn't attack the growing baby. But then what happens is the baby is delivered and it's like a rebound reaction whereby the immune system ( only if you are susceptible of course) will go into overdrive.

The difficult thing is it can take forever to know what exactly is happening, what condition might it be, can anything be done to treat it, is it worth the risks of taking that.

I have multiple very severe Autoimmune conditions diagnosed. My bloods are always normal and that makes this so hard to handle as no one believes how ill you actual are. The phrase ' your bloods are fine' is something that makes me shudder tbh.

No easy answers.

Ironically I'm having a bad fatigue day so can't make the comprehensive post I want to today. But as a long time sufferer of Fibromyalgia and M.E who has "been there and done that" with all treatments, diets etc - the time I felt best since having this disease was during pregnancy and breastfeeding. Better than I have with any medication. It wasn't until my DC weaned off breastfeeding that the symptoms started creeping back in. It's definitely auto-immune in my opinion.

Hope that post makes sense, the brain fog is kicking my bum today.