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.

Thank you. Following

I am having a reduction in my pain levels from taking mounjaro for weight loss. Have been able to reduce some of my codeine for neuralgia.

DH has been diagnosed with potential fibro very recently wo very interesting to see people's responses to pain meds etc, im a bit at sea with it all atm

I find fasting really good for keeping inflammation down. It's a bit crap but it works.

Being assessed for medical marijuana tomorrow by a private clinic. I was on pregabalin but felt too foggy on it so titrated off myself. I've heard ldn & kratom can help with fibro pain, I have an autoimmune condition, heds, long COVID and fibromyalgia & hard to know what's causing what pain etc! Gentle exercise and mostly whole foods, plant based, limited upfs have helped. One friend got hers in remission with Chinese medicine, acupuncture & addressing mental health stuff. Another uses marijuana, micro doses of psilocybin and bryonia extract. It's a complicated condition for sure.

OP - was this the study you were referring to? www.kcl.ac.uk/news/new-study-shows-fibromyalgia-likely-the-result-of-autoimmune-problems

I've started on testosterone as there was a study in 2016 which suggested it helped.
I've tried everything else, might as well give this a go!

www.sciencedirect.com/science/article/pii/S1567576915002453#:~:text=Testosterone%20therapy%20significantly%20reduces%20pain,with%20beneficial%20safety/efficacy%20profile.

Hi, I have Fibro and ME along with secondary conditions. My last big flare was in 2022. Long story, short version, i tapered off Duloxetine that was prescribed for Fibro by the Rheumatologist, the long term side effects were worse than the conditions. In 2023 I tapered off Tramadol and it's the absolute best thing I've ever done, my GP took so much time with me explaining my receptors were overloaded by opiates. I've reduced inflammation by diet, I still take Naproxen and co-codamol. I'd look at the psychotherapy too, i attended a 12 week course at our local MH hospital and I found it very helpful. It's maybe not what you mean though sorry. I agree with you about the pain clinic. Ours wrote back to my GP twice and said I wouldn't be accepted due to my Tramadol use and the second time I had to work to get my MH stabilised. That was such a blow because it made me feel stigmatised. I still have pain and small flares but coming into Autumn now and I don't feel anywhere near like I normally do. My neuralgia and allodynia haven't flared as bad either. X

Yes that's the study .

You might like the Health Rising blog, it’s about Chronic Fatigue Syndrome but also covers Fibro. The author summarises new research in a really accessible way. www.healthrising.org/

Did the pain clinic really say that? Wow.

That's just cemented for me that it won't be at all helpful!

This is my take on it, a Fibro diagnosis is a cop out. When they can't be bothered to find out what is actually wrong, Fibro is diagnosed. Then everything ever is blamed on it, and of course there is no cure or anything that can help, according to medical professionals.
I actually have Ehlers Danlos hypermobility type. Private physio and ultimately looking after myself has meant I can lead a fairly normal life. Also going on a mild dose contraceptive pill, and taking liquid iron. I eat well, I walk, and I make sure I have a good sleep routine. I haven't had painkillers for years and years, not that the concoction they had me on made any difference other than making me spaced out.
It's interesting how many people are saying they are linking it to peri or menopause. It's hormones. I really had to fight my corner on that one but I knew that was the cause for me and had it confirmed privately.

I hope it works out. If you don't mind updating, please let us know how it goes.

I do sometimes smoke it for pain relief (not prescribed). It's really effective - I'd say as effective as morphine. But it's a bit of a double edged sword because it can make you so hungry that you end up with even worse inflammation from eating too much. The hunger wears off if you have it regularly enough, but I don't.

Have you tried T3 (liothyronine) for the fibromyalgia?

I was incredibly surprised by how easily my rheumatologist felt he could diagnose me with it. I immediately said I didn't feel it was the right diagnosis but he didn't want to listen.

I have lupus, quite severely. I was diagnosed in 2011….. there are massive differences between fibro and lupus, mainly as in the major organ involvement with SLE can actualy
kill me. For the first 7-8 years I was given various meds but mainly pain relief. The only time I felt better was when I moved miles and miles away and ended up under a different HA. Once I was weaned off the massive cocktail of drugs (morphine, codiene, sleeping pills, diazepam etc) I started feeling better….doesn’t mean I was getting better, but I defo felt it. The more clear my mind became, the more I could do. The more I could do, the more
positive I became. Now, though I do have the odd episode of full flare and get tired very very easily, I actually manage to do school runs, clean, hold down a little job etc. I do need pain relief but nowhere near like the amounts from before. Maybe a little DHC a few times a week at night. I can’t take any actual treatments for the lupus as I stared going blind and other strange responses. I get treated for the issues in that specific area (like I have kidney failure, so my Nephro team sort that). If someone told me in 2017 I’d be doing this well in 6 years and not relying on a massive brain numbing cocktail, I wouldn’t believe them either… but try to open your mind to what opiates do to the mind and body (both short and long term) and do a bit of research… I think you’d be surprised!

Spot on. My rheumatologist told me they diagnose it when there’s nothing else to diagnose. Though recent research has shown there could be an issue with pain signalling. Also so many are told it’s fibro when it’s something worse. Lupus is often the cause or Lyme disease etc. I know lots who have just accepted it and feel no better, probably because the actual illness isn’t being treated at all. With me I clearly had lupus and its cause was traced back to 1999. I’ve met many many people who tell me they have fibro and really read the handbook out.. one even told me her GP diagnosed her… no specialist follow up or referrals…. Then tried telling me lupus was nowhere near as bad. Which doesn’t help gain sympathy for what all these people are actually feeling… which is, whatever the actual diagnosis, true to them. Seems to easy to send someone on their way with heavy duty pain killers than spend time building a bigger picture of what actually could be life threatening diseases.

I've already got a diagnosis of psoriatic arthritis so I don't know why he wanted to also diagnose me with fibromyalgia. He did also ask if I had trouble sleeping. I said I did and he was like ah ha. When I said I'd had sleep problems from childhood though - apparently that was irrelevant information for him.

He kept telling me my muscles were hurting (because he poked me quite hard in the bicep) and again wouldn't listen when I said they weren't. It's all joint pain or pain along the bone, like my shin for example. I used to exercise intensively and do a lot of yoga so I know very well what my muscles feel like when they hurt.

I mean, he's the expert so what do I know? But I really felt like he wanted to find things to fit this diagnosis rather than listen to what I was actually saying.

There's a lady I discovered on instagram (Lauren vaknine) She had an auto immune disorder and was disabled. She completely changed her diet and lifestyle and was cured . I don't have fibromyalgia but her story is interesting.

I am so passionate about this and have been for years. I believe with absolute certainty that fibromyalgia is a made up diagnosis because clinician's don't have a clue what they're talking about!

In reality, people suffering and told fibromyalgia will highly likely have an autoimmune condition that attacks the small fibre nerves. I have such a condition. It's called Sjogrens and is the sister disease to Lupus. Many people have normal blood work. I was gaslit forever. I had a skin biopsy to prove small fibre neuropathy. Sjogrens is one of the leading causes of this. It is massively under diagnosed. The diagnosis for Sjogrens was again private for me( Lip biopsy) because multiple specialists would not believe my feelings that this is what I had.

I was also diagnosed with Ehlers Danlos.( Again , fobbed off by the NHS). Many told fibro I believe will have this.

Some people with Sjogrens take hydroxycloriquine and it helps their pain.

When these imbeciles just fob people off telling them fibromyalgia, they are preventing people from potentially trying something to manage the real route cause.

I understand your pain. Mine is full body now including my head and face and I have no choice but high level pain killers. It is agonising and soul destroying. I totally understand.

I've had Fibromyalgia for over 20 years, it started after having a very traumatic birth with ds, where I nearly died. I take dihydracodeine, gabapentin, amtriptyline, Mirtazapine & paracetamol. I went to the pain clinic, who were useless because I refused to say the pain was all in my head & then they just discharged me. Things that help are massage, I have a lady who comes & does me a massage at home, without this I would need even more pain relief, high dose magnesium, I take 500mg twice a day & heat packs. I've since been diagnosed with ME/CFS & Peripheral Neuropathy, my mobility is very poor, I have to walk with crutches or use a wheelchair. My pain is worse when the weather changes or is I am stressed or depressed, the brain fog is awful & add in the fact I'm autistic & waiting for an ADHD diagnosis & my brain some days doesn't know which way is up.

I have fibromyalgia and I find dairy and wheat makes the pain worse, swimming and light exercise helps relieve my stiffness

Also my specialist told me that it can often start with a trauma or childhood illness, she believes mine started when I have glandular fever.

What are the antibodies that the study refers to?