Fibromyalgia - be honest.

[Hellovation]

I think I’m going to be diagnosed with fibromyalgia.

I had never heard of it, until the neurologist and GP both mentioned it.

Having now mentioned this to a few people and their reaction leaving me confused, some internet searches lead me to believe it is widely believed to be a non diagnosis and simply something in one’s head or a ‘lazy diagnosis’ because doctors are at a loss.

I was heartened to think I might have a diagnosis and understanding and way forward to get better and live my life but now I feel so sad.

Be absolutely honest- what do you think of fibromyalgia?

Its absolutely real and often linked to nervous system dysregulation. It is treatable and/or managable but it really varies person to person. I would look into the work of John Sarno, read the book the way out by Alan Gordon, and download the curable app. There is a lot you can do to improve the situation. Many people with fibro have nervous system dysregulation for some reason, often trauma. It is important to get professional help from a psychotherapist if you have experienced traumatic life experiences.

It's up to you to show you cannot.

I think the move back to more Face to Face assessments is good for dealing with those sort of doubts as long as there are proper adjustments for those who cannot attend for health etc reasons.

@Hellovation I read after my first response that you do indeed have a history of trauma. Look into mind-body approaches. Your grit and get on attitude is most likely is a personality trait often seen in chronic pain. I am a professional working in this area and am happy for you to pm me if you want.

But how do you show you can't lift a kettle? Genuine question. Surely anyone can demonstrate this? I just put my hand on the handle and try to lift it and make some feeble attempt and then make ouchy face and say my wrist hurts? 🤔Obviously for some people that would be genuine but there is a risk of abuse I guess.

Coming back briefly - sorry, I won't be able to real all the posts, maybe I'll catch up on the gradually over time, but not all in one go - but this one caught my eye as very accurate.

I re-assert my belief [that's all it is, but a well-informed and thoughtful one] that the root cause of FM is a physical trauma like an accident that the body doesn't fully recover from, leaving it more easily and quickly affected by pain, tiredness, lack of stamina etc than a healthy body.

The childhood trauma point is interesting - I've seen that adults who were sexually abused as children may have a higher incidence of FM, so that could be a psychological rather than physical cause. Maybe the physical effects of stress and hypervigilance caused by abuse also damage the body and leave it vulnerable to physical damage, an poorer recovery from physical trauma?

Unfortunately one of the major symptoms of FM is other people eye-rolling and doing air-quotation-marks🙄

I repeat: keep moving at all costs; there are few conditions that don't benefit from exercise, but it's absolutely essential to exercise to maintain your mobility if you have FM - use it or lose it!

Read your posts and a few others.

Fibromyalgia is a diagnosis doctors give when they cant find the source of your problem. They dislike failure and therefore want you to go away. Therefore it's not a good diagnosis to get.

You'll need to look into other options yourself, then try discussing them with your doctors. Vagus nerve stimulation and hyberbaric oxygen therapy are worth investigating, accupuncture sometimes offers short term relief, there may be others. Hyberbaric oxygen is expensive unless you are need an MS centre that will accept people with other conditions, some do. Vagus nerve stimulation devices are expensive but if you had a TENS machine for pregnancy look at ear clips. You can also try placing the electrodes elsewhere e.g. https://www.caremax.com.au/blog/how-a-tens-machine-can-help-relieve-fibromyalgia-pain#:~:text=There%20are%20two%20main%20placement,that%20is%20characteristic%20of%20fibromyalgia.

Good luck.

Also I think you’re missing the point also - if you can’t lift a kettle, PIP assessors are more likely to tell you you’ll have to give up tea/coffee rather than award you PIP. Can’t cut your veg? That’s why the shops sell pre cut veg now…

This is good advice. I have several auto-immune conditions, kicking off with Graves' in my twenties and then collecting a few from there. I've found for me it's important to remain positive - I prioritise my health - home cooked healthy food, no drinking, smoking, good nights sleep. I couldn't have children so that has helped with the fatigue. Yoga, therapy if I need it. It's allowed me to always stay in work. I am currently part time but that's my choice, not because I need to, I'm retraining into a different career. I am late forties now and I can say chronic illness has been an inconvenience but not the focus of my life. I rarely mention it to anyone. My long term partner understands that I need to prioritise myself and my health and supports that. I'm finding now as my friends complain about their menopause symptoms it's quite funny, as I've had them for decades already.

Find a good therapist, it will help you a lot.

I should say, though, the mind and body are one - so physical manifestation of mental anguish is a real thing. You will feel more pain if you focus on the pain. I know a lot of people with CFS/ME/Fibro due to some of the circles I move in (herbal medicine), and they all have past trauma that needs resolving, but maybe that's just a coincidence, but it's interesting you also have that. The ones who are doing better are those that are working on that mental healing.

I feel some people can be a bit eye-rolly about ME/ CFS/ Fibromyalgia/ long covid.

I’m sure that, if it affects you, it must be horrid.

I think that at some point there will be more research and scientific evidence as to what it is, who it affects, how and why etc etc etc and that these sorts of conditions will be better understood - seen as more ‘valid’ -and hopefully treatable.

I know of at least 5 people in my local area who are on full disability for fibromyalgia. One of them is in her early 40s, her husband is her carer. She has never worked a day in her life and neither has he, she has all the new mod cons, new phones, nice clothes, lashes and nails done every 2 weeks. She goes abroad 3 times a year. She is well enough to be drinking in the pub every weekend and butlins weekenders 2-3 times a year. Is she sick? Is she bollocks.

I know several more like her as well.

Has polymyalgia been ruled out? Fibromyalgia isn't an inflammatory disease, I don't think.

Polymyalgia can develop into something very serious if the inflammation isn't reduced with medication.

There’s a well acknowledged problem of lack of diagnosis in other patient groups, not sure why autoimmune patients should not be expected to find this problematic too.

like with rare diseases where undiagnosed adult patients or parents of patients get together online for support, day to day stuff but also which focuses on the search for a diagnosis. Patients compare their symptoms and even genotypes online to try to spot similarities and differences and try to get closer to a diagnosis. Sufficiently ultra rare conditions don’t even have a name which is a well acknowledged problem in itself because it gives permanency to patients carrying the burden of not knowing.

Ive been really upset by this stuff from the Health Secretary in the news claiming without evidence that there is overdiagnosing right before bringing in a massive round of health and welfare benefit cuts. Let’s not fall for that.

Oh and for anyone thinking recommendations are snake oil - research means things like https://www.meresearch.org.uk/hyperbaric-oxygen-therapy/ Non-invasive vagus nerve stimulation is over-hyped but there will probably be more studies.

One thing I do agree with is that both the ME/Fibromyalgia diagnosis is a catch all diagnosis for many different conditions - either that have been missed or that just haven’t been discovered yet. I’m 99% sure my ME/CFS is an auto immune issue as it developed post glandular fever. I also am so susceptible to getting any colds, flus etc and they hit me 10 times worse than your average person and often turn into tonsillitis/ear & throat infections/pneumonia. I have had so many tests and continue to and each time I desperately hope something treatable will appear. However this is my story and belief about my illness and I think others with ME may feel differently..

I’m also incredibly lucky as my ME is not as severe as others - I manage to work full time and I am grateful for this. But to be able to work full time, I have to hybrid work and I barely do anything outside of work. This is not how I would choose to live life but I am grateful I’m in a job that allows me to manage my flares and I have had my condition long enough now (diagnosed 11 years ago, symptoms started 16 years ago) to know how to get through day to day. I have so much sympathy and respect for those worse than I am with either Fibro or ME. I really hope we get more answers in the future.

I think it's a made up diagnosis, which doctors use . When they can't find any think wrong physically.

Through my job I’ve met many many people with fibromyalgia. I find it so sad and frustrating when other medical professionals sideline it, or just give the diagnosis with no advice or support on how to manage it.

The people I have met have common symptoms to each other, and similar backgrounds that I feel it’s real and do my very best to help them regain as many aspects of their lives as possible.

I hope in the future there is an objective measure of central sensitisation that can be used to positively rule in fibro, I hope this will help medical professionals (and then the rest of society) deepen their understanding and respect those managing these awful symptoms more.

It's a very real pain condition. Sadly I do know that people doubt it but it categorically is real and I am still so sorry that people have their pain doubted generally (those with fibro but also other pain conditions). I have a PhD in a very related area so see the research side of this.

Sorry just come back to this thread.

My post wasn’t meant to derogatory. And whilst the research is on going there is no true diagnosis other than we have ruled out everything else.

I believe it’s a very real condition. Apologies if my post didn’t come across like that.

I know it's one of the conditions, like back pain and MH issues, that is difficult to evidence and hence tends to attract people looking for ways of leaving the workforce and obtaining benefits. I'm sure there are people who really are badly disabled by it. I know there are others who aren't.

A decade or more ago I had a social worker friend in her 50s tell me that she, like most of her colleagues of a similar age, were angling for early retirement on health grounds. She went the fibromyalgia route: strange pains, time off, a bit of a recovery, then a recurrence, investigations, tests, a couple of weeks off, back to work part-time, a relapse, more time off, more tests... I think it took about three years before she was allowed to retire early. There was nothing wrong with her, it was all made up. She talked to friends openly about it and dropped out of a lot of socialising at the time in case she was caught out dancing or cycling or whatever when she was supposed to be in bed exhausted or in pain.

I'm sure you're genuine, OP, but some of your fellow sufferers are exploiting the mysterious nature of this condition. I hope you find some relief.

@LSGXX that's the thing...it's the diagnoses that are eye-rolly, not the conditions. Just because something gets a shadowy catch-all diagnosis doesn't mean it doesn't exist, it means there hasn't been enough research done and the condition is poorly understood. In Nicaragua, where some of my family is from, some people believe mental illness is demonic possession...doesn't mean the actual illness doesn't exist.

My GP mentioned this years ago, but ruled it out because I was in my 20s at the time and apparently it's unheard of at that age. I still have sky high inflammation levels and haven't seen a rheumatologist since 2011, despite me practically begging for help.

On a related note, can I recommend the book The Lady's Handbook for her Mysterious Illness by Sarah Ramey.

It's a memoir of a woman who developed one of these complex conditions that mainly affect women, and all the shit she went through because of it. Really worth a read for anyone who buys into the line that these conditions are just made up.

Fibro stole my life. Overnight. I woke up a different person.

Research shows Fibro is autoimmune. It feels autoimmune to me, always has. Trauma, be it physical or emotional, can trigger any autoimmune condition. Autoimmune conditions never travel alone, it’s a domino effect. They also predominantly happen to women because our immune systems are (for want of a better word) ‘stronger’ than men’s, pushing them into overactivity. This would explain 80% of Fibro sufferers being women.

Of course it’s real. Hopefully soon they’ll be able to isolate the antibody to test accurately thus eradicating the prevalent misdiagnosis.

I have all these symptoms too. I was absolutely convinced I had MS and pushed to be tested but MRI said I don’t have it.

I was tested for so many things before my rheumatologist decided it was fibromyalgia. I’m still not convinced but what choice do I have but to accept it.

Symptoms are real, condition itself is poorly understood. When people dismiss it as ‘something in your head’ or when sufferers are upset by this, it just shows our general ignorance. Pain literally IS in our heads, all pain. Similarly, implications that it’s caused by stress often seem offensive but why? There is a clear link with stress/trauma. For this and many, many other conditions. Again it’s just our poor understanding of how stress affects us - the whole distinction between ‘mental’ and ‘physical’ health is something that future generations will probably laugh at.