Page 25 | Fibromyalgia - be honest.

Hellovation · 2025-03-19T21:16:21+00:00

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?

BrandonFlowersEyesWithEyeliner · 21/03/2025 08:46

octopusenergyfree50 · 21/03/2025 01:29

I think if this thread was about horrible stereotypes of any other group of people it would be removed but disability and illness seems fair game these days.

Please try to remember how you are making people feel, whatever you believe the cause to be we are still human beings

The scariest post are the ones from medical professionals with these views when the research is going in the autoimmune direction

With respect - it is not sneering and "stereotyping". This is a research. The typical demographic. Lots of illnesses have a typical demographic.

Who is the typical demographic of a heart attack ? Middle aged overweight male that smokes and has a sedentary lifestyle.

Does that mean heart attacks don't happen to older, slim, active females? Of course they do! But if you were to find the commonest features, you will get the commonest demographic.

You can't fight statistics because they don't say what you want them to say

Sunshineandclearskies · 21/03/2025 08:46

octopusenergyfree50 · 21/03/2025 00:54

This article is really interesting. Especially this bit:

The researchers injected mice with antibodies from people living with FMS and observed that the mice rapidly developed an increased sensitivity to pressure and cold, as well as displaying reduced movement grip strength. In contrast, mice that were injected with antibodies from healthy people were unaffected, demonstrating that patient antibodies cause, or at least are a major contributor to the disease.

Furthermore, the mice injected with fibromyalgia antibodies recovered after a few weeks, when antibodies had been cleared from their system. This finding strongly suggests that therapies which reduce antibody levels in patients are likely to be effective treatments.

Can people please read this, how is this research result possible if it is a mental health problem

Its certainly very interesting. Do you have a link please ☺️

Sunshineandclearskies · 21/03/2025 09:18

ThisLimeShaker · 21/03/2025 00:03

If I was facing fibromyalgia - as you asked for honest opinion - I would cut out all wheat and then I'd try maybe a low histamine diet. Possibly also do fasting and maybe some ketosis. Stick to an anti inflammatory diet. My gut feeling is that would eliminate a lot of symptoms. Limit alcohol. Avoid stress. Avoid pollution. Gradually build exercise up e.g. walking up to swimming etc. One day active one day rest. I'd then see what symptoms were left. My firm belief is that it would reduce symptoms.

I have a serious condition, have always been prone to migraine, very sensitive to noise, take an immune suppressant for something else and those kinds of things help me.

I have actually had some success with a low inflammatory raw and plant based diet. It has actually been the only thing that works. Exercise has been a hit and a miss and pacing is difficult at I can get trapped in the house. A slow steady build up of exercise is the key.

From my own experience my default can be to hide from the pain and fatigue, my brain wants me safe and cosy which usually involves the couch and comfort food. I "know" what I need to do but putting that into practice is difficult. This all possibly stems from Trauma and I've recently received a diagnosis ADHD at 51 which makes so much sense as I think I've been masking and chronically overwhelmed and overstimulated all my life.

Trying to find a support group for Fibromyalgia is a nightmare as nobody wants to talk about getting well, it has become their identity as it’s the only place they don't get judgment and are validated. But as soon as you mention diet or exercise you become the enemy and if anyone dares say they have some had success or worse gone in remission then they're told they never had it in the first place.

Anyway.. I have my grandson who has his own difficulties living with me now so I have to fight to be well to look after him so I'm back on the healthy eating and have started walking. The recent sunshine helps ☺️

Maybe I could start my own support group 😃

Sunshineandclearskies · 21/03/2025 09:24

ThisLimeShaker · 21/03/2025 08:01

No need to laugh at me - OP asked for opinions.

"although it reduced asthma and IBS symptoms to the point where I have come off daily medication so I continue it" I'm not an expert in FM symptoms but this sounds like a good thing as it's reduced the load on you.

I agree you have to define your own definition of active and exercise. I would define walking as being active. 4k-7k steps a day for me would be fine as being active, and a 2.5k steps day would be a rest day. Trying to list some weights 3 times a week even if just 5kg bells. Somatic yoga or yoga generally is pretty challenging for me on an immune suppressant - it releases too much and makes me tired too. I prefer massage and just have one every three months instead. Cardio is kind of the important one - and the most exhausting - not sure I've cracked it but in the past I've done a once a week swim when I know I've got two low key days ahead. It does involve self limiting activities a lot. Looking for times when I can move less. Taking taxis at times.

Stress really is the biggest provoker of symptoms for me on an immune suppressant (plus monthly cycle). Daily I just try and simplify and care less about less important things. I don't know how you cope with the big stressors - I've had those too - other than practising acceptance, priorising self care in those difficult times even if just a bath at the end of a day etc. I'm sorry lots of those have happened to you recently.

I now go into work earlier to avoid walking through traffic and it does help. Also keep an eye on poor air quality days and I try to go outside less on those. Sounds crazy but it's a massive issue in UK and The government needs to take more action on it. I take vitamin D all year round now as its all been shown to be Beneficial for my condition. Also keep a good balance of protein carb and healthy fat and try and maintain my muscle mass. Sufficient daily calorie intake c2000 a day. Occasional days I might give my digestion a break and just do soup and veggies. I'm okay with wheat now as long as not ultra processed so I stick to pasta and breads like sourdough and or ones that are just extra virgin olive oil and flour. Take a daily antihistamine again helps reduce load on my immune system.
Making use of support groups and any helplines.

I'm sorry I came across as patronising. I lived with a serious condition with 15 years before I got a diagnosis, just assuming the symptoms were part of getting older and making adjustments that made my life smaller. Luckily I got a medication that stopped it before it became life limiting. FM definitely requires more research and treatments.

Some days I inexplicably get migraines and feel like I'm coming down with something - much less than you have with FM I'm sure - and it can be 3-4 days until a migraine clears and 2 weeks until the General tiredness goes. I just have to scale back activity, cancel things, and wait for it to pass, spend a weekend in bed etc. and just do the basics.

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Some really good advice. Thank you for sharing ☺️

Sunshineandclearskies · 21/03/2025 09:33

CherryRipe1 · 21/03/2025 07:36

https://pmc.ncbi.nlm.nih.gov/articles/PMC8245181/#:~:text=Mice%20treated%20with%20IgG%20from,to%20cold%20and%20mechanical%20stimulation
For the naysayers. Also I read there will be a blood test in the near future to diagnose fibromyalgia.

This is very interesting, I'll read it properly later 👍 Thanks

incywincyspiders · 21/03/2025 09:37

BrandonFlowersEyesWithEyeliner · 20/03/2025 22:38

Yes absolutely
That's my point.

The "typical" fibromyalgia sufferer is a middle aged woman with concomitant mental health diagnoses or other functional syndromes such as CFS and without further education " (the initial poster asked for that info)

If you said , by statistics, who is a politician? The answer would be "a middle aged affluent white male". Doesn't mean Kemi Badenoch doesn't exist does it ? (Although she is indeed affluent 😁)

Some posters (ironically the shouty ones with fibromyalgia on here ) can't seem to grasp facts and statistics, just because they find them offensive

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oh please, if you were here to report “facts and statistics” you wouldn’t have fed me the “everyone is exhausted because we have busy lives but people with severe fatigue lie in bed all day and then have the nerve to say they’re tired” line earlier in the thread.

incywincyspiders · 21/03/2025 09:41

Also the typical age range for diagnosis is 25-55. I wouldn’t say that’s JUST middle aged 👀

Bromptotoo · 21/03/2025 10:05

Working with people claiming Universal Credit I hear Fybro amongst their health conditions on a near daily basis.

Until, in any specific case, it's proven to be wilfully made up I'm going with the symptoms being very real indeed.

anyolddinosaur · 21/03/2025 10:21

@Sunshineandclearskies Here is a link to university reporting. https://www.kcl.ac.uk/news/new-study-shows-fibromyalgia-likely-the-result-of-autoimmune-problems

Free full text link https://pmc.ncbi.nlm.nih.gov/articles/PMC8245181/

Sunshineandclearskies · 21/03/2025 10:32

anyolddinosaur · 21/03/2025 10:21

@Sunshineandclearskies Here is a link to university reporting. https://www.kcl.ac.uk/news/new-study-shows-fibromyalgia-likely-the-result-of-autoimmune-problems

Free full text link https://pmc.ncbi.nlm.nih.gov/articles/PMC8245181/

Edited

This is amazing 😃 and hopeful, not to mention validating. It also explains why an inflammatory diet helps. I'm of down a rabbit whole now 👋

DoNoTakeNo · 21/03/2025 10:57

SpikyCelia · 19/03/2025 21:32

Fibro is a government and NHS recognised condition and I am grateful for that as ignorant comments like yours make it very difficult for sufferers to be taken seriously. Research is now showing it to be originating as an auto immune condition affecting the nervous system. It is also extremely exhausting, painful, and demoralising, every day as symptoms change every hour, minute, second, so life- if you can call it that- cannot be planned in any form. This is why so many lose their homes, jobs, friends, families, freedom, and selves , as they are too busy fighting pain and fear. I say this not through sound bites on social media, but because I have lived with it for a third of my life, and it is hell.

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Your post really resonated with me; I’m so sorry you’ve had this for so much of your life, @SpikyCelia It’s an awful condition (I have it too) & the unpredictability is almost as bad as the symptoms.
Best wishes xx

CherryRipe1 · 21/03/2025 12:52

IWishTheBishopWell · 21/03/2025 07:45

I started developing intermittent symptoms of arthritis at 15, after a nasty bout of glandular fever. A few weeks after my 22nd birthday I developed flu like symptoms and developed pain all over and struggled to move. I was diagnosed with fibromyalgia a few months later. My bloods were normal bar a bad vitamin D deficiency and high inflammatory markers. I was size 10, a recent graduate and reasonably active. No history of mental health issues. I'd just started a new job and was very happy when my symptoms began.

I developed psoriasis at 23 and symptoms of psoriatic arthritis alongside. Bloods and scans still negative, except for the high inflammatory markers.

I was diagnosed with Ehlers Danlos at 26 and eventually diagnosed with psoriatic arthritis at 31.

I've moved around a lot and seen many rheumatologists since 2010. All of them say fibromyalgia is real.

IME a lot of people who are diagnosed with fibromyalgia are later diagnosed with commonly comorbid conditions like RA, PsA, lupus, sjogrens etc.

Spot on! I've got hEds, Sjogrens, fibro, spondylosis & occasional Raynaud's. These AI conditions seem to invite their asshole friends to the party. I have lupus & mthfr genes. I think we can be genetically predisposed & our xx chromosomes a disadvantage for autoimmune conditions. Like you I had dangerously low vit D no plus a series of debilitating viruses, extreme trauma, menopause & then COVID & remedy put me in huge flares. Diet has helped tremendously & I'm fortunate to be able to sleep like a drugged sloth despite the fibro etc. Morgan Freeman is the only man I've come across with fibro so far.

Itssofunny · 21/03/2025 13:09

ThisLimeShaker · 21/03/2025 00:03

If I was facing fibromyalgia - as you asked for honest opinion - I would cut out all wheat and then I'd try maybe a low histamine diet. Possibly also do fasting and maybe some ketosis. Stick to an anti inflammatory diet. My gut feeling is that would eliminate a lot of symptoms. Limit alcohol. Avoid stress. Avoid pollution. Gradually build exercise up e.g. walking up to swimming etc. One day active one day rest. I'd then see what symptoms were left. My firm belief is that it would reduce symptoms.

I have a serious condition, have always been prone to migraine, very sensitive to noise, take an immune suppressant for something else and those kinds of things help me.

Completely agree. This is what I have done and my chronic fatigue has almost disappeared.

FlatWhiteExtraHot · 21/03/2025 14:19

Hhoudini · 20/03/2025 19:59

Something that I find really interesting is that the people that I know with fibromyalgia talk about the way that they were cared for as a child when they were in lots of pain in quite fond terms (almost word for word in some cases). For some of them I know that they had quite emotionally distant relationships with their mothers. I wonder of anyone has done any research on this.

Right, so some were well looked after when they were ill and some weren’t. Just like the rest of the population 🤦‍♀️.

FlatWhiteExtraHot · 21/03/2025 14:29

Heatherjayne1972 · 21/03/2025 06:47

Sorry to hear this op. All I can say is listen to your body. Stop when it needs rest. Don’t feel guilty
and prepare yourself for tons of ( not very helpful) advice
also whenever you go to the GP be prepared for everything to be blamed on your fibro

I have another autoimmune condition and I avoid the doctors as every time I go they blame it on that
I could turn up with a broken leg and it would ‘be because of the autoimmune condition I have. Very frustrating

This drives me insane. Literally everything is blamed on my fibro.

Hhoudini · 21/03/2025 14:33

FlatWhiteExtraHot · 21/03/2025 14:19

Right, so some were well looked after when they were ill and some weren’t. Just like the rest of the population 🤦‍♀️.

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You’re missing the point which is fair enough, I’ve been vague to avoid breaching anyone’s confidentiality and in doing so, I can’t explain the specifics.

ElbowsUpRising · 21/03/2025 14:36

FlatWhiteExtraHot · 21/03/2025 14:29

This drives me insane. Literally everything is blamed on my fibro.

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Yep. My dd had her chest pain and shortness of breath blamed on fibro and they missed massive pulmonary embolisms in a&e! Thankfully she was still alive when she went back the following week. Thankfully I took her back as I nearly didn't! You believe what the doctors tell you!

DungareesTrombonesDinos · 21/03/2025 14:51

I was diagnosed with it maybe 10 years ago along with hypermobility, arthritis, pernicious anaemia and Hashimotos. I still work 2 jobs and have accepted that I'm in pain most of the time. I've found that losing weight and increasing waking massively helps. My elbows were burrnnninggggggg last night in bed it was driving me mad

Newtess · 21/03/2025 18:25

I saw a chiropractor from USA on YouTube who'd developed fibro himself and had commissioned research on it about ten years ago. I can't remember his name now. But he thought that fibro sufferers had antibodies attacking the thyroid gland. We don't routinely test for that here, just the thyroid levels. So I paid for a Medichecks test and I did indeed have antibodies attacking the thyroid. I get it tested every year and I always have them. My thyroid function deteriorates a little bit every year. So I think there will be blood tests for fibro before long.

ThisLimeShaker · 21/03/2025 18:30

Sunshineandclearskies · 21/03/2025 09:18

I have actually had some success with a low inflammatory raw and plant based diet. It has actually been the only thing that works. Exercise has been a hit and a miss and pacing is difficult at I can get trapped in the house. A slow steady build up of exercise is the key.

From my own experience my default can be to hide from the pain and fatigue, my brain wants me safe and cosy which usually involves the couch and comfort food. I "know" what I need to do but putting that into practice is difficult. This all possibly stems from Trauma and I've recently received a diagnosis ADHD at 51 which makes so much sense as I think I've been masking and chronically overwhelmed and overstimulated all my life.

Trying to find a support group for Fibromyalgia is a nightmare as nobody wants to talk about getting well, it has become their identity as it’s the only place they don't get judgment and are validated. But as soon as you mention diet or exercise you become the enemy and if anyone dares say they have some had success or worse gone in remission then they're told they never had it in the first place.

Anyway.. I have my grandson who has his own difficulties living with me now so I have to fight to be well to look after him so I'm back on the healthy eating and have started walking. The recent sunshine helps ☺️

Maybe I could start my own support group 😃

Show quote history

Yes I turn to vegetable only days if I know headaches are coming. I'm especially vulnerable in the week before my period. Agree about exercise- the worst thing is to trigger the immune system and then get a flare up because you are back to square one. I have an indoor walking treadmill and a (fairly unused!) exercise bike. The treadmill is pretty useful. That's very insightful about the brain and keeping you safe etc. I was diagnosed with inattentive ADHD In my late 30s. Actually what has helped the most was recently having EMDR therapy. Combined with now fortunately being removed from the situations that were triggering my trauma I'm genuinely hopeful. For example I felt like absolute death around my last period - I think it was hayfever in the mix too - but I didn't crumble (didnt have an option either), I semi rested and knew it would pass. I think the EMDR helped in this. I had to fight so hard for it on the NHS but its the best thing the NHS (apart from my medication for my condition) has ever done for me. Masking is exhausting. I had more people facing jobs in my 20s then moved to more office roles which have suited me better. Hybrid working also helps a lot. I'm enjoying 3-4 days office based and 1-2 wfh plus quiet weekends. I also learned that I'm extremely sensitive to noise - active noise cancelling headphones are a genuine game changer for my ADHD/overwhelm. Mmm I can relate on the support groups, I set up a book club a few years back and it attracted quite a few people with long term health conditions. It didn't quite work for me. I am a member of a support group for my condition but we only meet twice a year in spring and autumn. It's an opportunity for me to check in and remind myself not to ignore my condition, but means I'm not always thinking about it. Another thing I like and want to do more is groups that I can participate in related to interests that aren't hugely taxing physical wise but have a social element - examples would be singing, public speaking skills, laughter yoga, that kind of thing. There's also an enormous amount of online meetups now which means I'm not having to choose between being a hermit or exhausting myself - I can do social things out the house, but also do learning and networking online. I think there's a risk with medicalising everything so much that basic things that help don't get focused on. I'm quite cynical that it's about money - drinking water, eating brocolli, going for a walk and talking to a neighbour never made anyone rich (arguable if you were a Thames water boss!) so they're not as focused on. But it's unquestionable that anyone with any illness will have better outcomes if they look after / are supported to look after the basics. It's not easy, it's a fight to do the basics. That's good that you have your grandson for motivation- some kind of bigger purpose always helps me - currently that's work and some vague idea that one day I might be what I would call fit again! Is there a charity for fibromyalgia? Or some kind of umbrella organisation that it comes under?

Juniegirl · 21/03/2025 18:47

I know someone who was crippled with Fibromyalgia, she went to Turkey, had a gastric sleeve, got down to a size 12 and suddenly she can do everything! No sign of any illness at all. Still claiming all the benefits she can though.

pearbottomjeans · 21/03/2025 18:59

Juniegirl · 21/03/2025 18:47

I know someone who was crippled with Fibromyalgia, she went to Turkey, had a gastric sleeve, got down to a size 12 and suddenly she can do everything! No sign of any illness at all. Still claiming all the benefits she can though.

What do you mean by that? It makes sense that if you get rid of extra weight (which is inflammatory), then your symptoms of inflammation will go down. What’s benefits got to do with it?

farmlife2 · 21/03/2025 20:34

Newtess · 21/03/2025 18:25

I saw a chiropractor from USA on YouTube who'd developed fibro himself and had commissioned research on it about ten years ago. I can't remember his name now. But he thought that fibro sufferers had antibodies attacking the thyroid gland. We don't routinely test for that here, just the thyroid levels. So I paid for a Medichecks test and I did indeed have antibodies attacking the thyroid. I get it tested every year and I always have them. My thyroid function deteriorates a little bit every year. So I think there will be blood tests for fibro before long.

That's interesting as the two people I know who have fibro do have autoimmune thyroid antibodies. If nothing else, that must show they are predisposed to autoimmune conditions.

Sunshineandclearskies · 21/03/2025 20:37

ThisLimeShaker · 21/03/2025 18:30

Yes I turn to vegetable only days if I know headaches are coming. I'm especially vulnerable in the week before my period. Agree about exercise- the worst thing is to trigger the immune system and then get a flare up because you are back to square one. I have an indoor walking treadmill and a (fairly unused!) exercise bike. The treadmill is pretty useful. That's very insightful about the brain and keeping you safe etc. I was diagnosed with inattentive ADHD In my late 30s. Actually what has helped the most was recently having EMDR therapy. Combined with now fortunately being removed from the situations that were triggering my trauma I'm genuinely hopeful. For example I felt like absolute death around my last period - I think it was hayfever in the mix too - but I didn't crumble (didnt have an option either), I semi rested and knew it would pass. I think the EMDR helped in this. I had to fight so hard for it on the NHS but its the best thing the NHS (apart from my medication for my condition) has ever done for me. Masking is exhausting. I had more people facing jobs in my 20s then moved to more office roles which have suited me better. Hybrid working also helps a lot. I'm enjoying 3-4 days office based and 1-2 wfh plus quiet weekends. I also learned that I'm extremely sensitive to noise - active noise cancelling headphones are a genuine game changer for my ADHD/overwhelm. Mmm I can relate on the support groups, I set up a book club a few years back and it attracted quite a few people with long term health conditions. It didn't quite work for me. I am a member of a support group for my condition but we only meet twice a year in spring and autumn. It's an opportunity for me to check in and remind myself not to ignore my condition, but means I'm not always thinking about it. Another thing I like and want to do more is groups that I can participate in related to interests that aren't hugely taxing physical wise but have a social element - examples would be singing, public speaking skills, laughter yoga, that kind of thing. There's also an enormous amount of online meetups now which means I'm not having to choose between being a hermit or exhausting myself - I can do social things out the house, but also do learning and networking online. I think there's a risk with medicalising everything so much that basic things that help don't get focused on. I'm quite cynical that it's about money - drinking water, eating brocolli, going for a walk and talking to a neighbour never made anyone rich (arguable if you were a Thames water boss!) so they're not as focused on. But it's unquestionable that anyone with any illness will have better outcomes if they look after / are supported to look after the basics. It's not easy, it's a fight to do the basics. That's good that you have your grandson for motivation- some kind of bigger purpose always helps me - currently that's work and some vague idea that one day I might be what I would call fit again! Is there a charity for fibromyalgia? Or some kind of umbrella organisation that it comes under?

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https://www.fmauk.org/

https://painuk.org/members/charities/fibromyalgia-action/

I really identify with some of what you shared. Thanks ☺️

Fibromyalgia Action UK

Fibromyalgia Action UK is a registered charity administered primarily by unpaid volunteers. The majority of volunteers are also fibromyalgia sufferers who work extremely hard, despite their condition, in order to forward the cause of fibromyalgia. FMA...

https://www.fmauk.org

myplace · 21/03/2025 22:03

BrandonFlowersEyesWithEyeliner · 20/03/2025 22:38

Yes absolutely
That's my point.

The "typical" fibromyalgia sufferer is a middle aged woman with concomitant mental health diagnoses or other functional syndromes such as CFS and without further education " (the initial poster asked for that info)

If you said , by statistics, who is a politician? The answer would be "a middle aged affluent white male". Doesn't mean Kemi Badenoch doesn't exist does it ? (Although she is indeed affluent 😁)

Some posters (ironically the shouty ones with fibromyalgia on here ) can't seem to grasp facts and statistics, just because they find them offensive

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Show quote history

I’m not offended by stats, but am offended by the way they are used.

Concomitant mental health or other functional disorders…

Well yes. It’s somewhat depressing having an invisible illness that stops you doing all the stuff you live to do. Putting on weight because you can’t be as active as you were, and eat more than you used to for comfort/boredom. And the other health conditions- well for a start you get tested for everything under the sun as part of the exclusion diagnosis so they find the low VitD, iron, thyroid etc. And if your body is malfunctioning around sleep and pain, you are likely to have other symptoms like chronic fatigue, anxiety and much much more.

I stopped going to a support group because, like a pp found, people were just collecting symptoms and conditions. I think it validates their pain/limitations. Like, I can’t do much but it’s not my fault I have all these things wrong with me.

Fact is, we have one condition with a myriad of symptoms which are all shit. However the medication for the condition has really helped me with symptoms I struggled with long before diagnosis, so it isn’t all bad!

The demographic is not flaky poorly educated women grasping at multiple straws to avoid work. It’s women who’ve kept going for years despite aches pains and exhaustion and have finally been forced to stop by a myriad of symptoms.

Fibromyalgia - be honest.

Interested in this thread?