Interesting and depressing article today in the Guardian about broadcaster Kirsty Young's battle with both Fibro and RA.
I find it concerning that Fibro is still disbelieved by some medics and if a lady as well connected, bright, articulate and comfortably off as Kirsty is struggling be heard and believed then what chance do regular people have. theguardian.com/media/artic...
I’ve just been reading that too. It’s so sad. Suspect she wouldn’t have been treated so badly if she were male (massive generalisation as I know from posts here that that’s not always the case) but it’s definitely a factor.
Perhaps in your imagination
There is definitely research that backs this up (and a great number of books). Being female can evoke strong biases in the medical community. If on top of that the patient is not white and/or obese, they really have to battle to get appropriate medical attention. The dogma of the "hysterical female" has not quite left us and other biases are rampant still.
Nope.
In addition to research backing up this issue, here is one of my many interactions that are simply easier to put on females -
I have not been able to walk properly for seven years, after having sepsis twice. And I am a confident person that has no issue pushing necessary issues.
I was having a casual conversation with my endocrinologist regarding a study about how t3 receptors can be damaged after sepsis. Just wanted to get his thoughts on the research part of it all.
He let out that he thought my walking issues were all in my head. And that sepsis can bring mental health issues, to back up his diagnosis coming out of nowhere - when I held my own. He has none of my medical history on hand in this area.
Two weeks later an MRI showed an almost complete obliteration of the epidural canal, with other issues including severe spinal stenosis. I only got that MRI because I had noticed that years earlier, when I had sepsis, a thorough radiologist had mentioned issues that were not the focus of that MRI. I had bought the scan and kept it in my head. My GP said if you send me that report with that line, I will do an MRI. My prior GP, female by the way, would say things like "well all your labs look good" and "Are you sure you are not depressed?". I would answer her Nope, I know what depression is and no. But hey I might get there if we don't figure out why I can't walk properly. 🙄
There is no way in hell that a man would say he was an avid walker his entire life & suddenly can not walk properly & get nowhere for years on end. He certainly would not need to submit proof first, to get an investigative necessity.
And there is absolutely no way that my endocrinologist would have the guts to say what he said to me to a man.
Two male friends were shocked. One that had spinal stenosis & explained his symptoms once to his doctor and got an MRI. Once. Not for seven years.
Another said he would have had a hard time not to clock any doctor who said he probably has a mental issue for an ongoing serious physical one, one that has never been investigated first. In general terms but most certainly out of the blue without any medical investigation.
It is not every doctor. I have one outstanding specialist. But way too many. Don't know your gender, but truly happy you have not experienced this issue. There is incompetence but then there is incompetence plus bias. Both are alive and well, unfortunately.
(I let my endocrinologist know the outcome & to his credit he apologized for his false diagnosis out of nowhere. And was sorry he hurt my feelings. I explained I was more than able to deal with my own feelings. And that this was about people knowing their own bodies & not being heard. And how tiring that is when you are already at a deficit, often without proper energy to continue to fight for yourself.)
Gender bias in medicine is well known, there has been lots of research into it, and sadly its still ongoing. Endometriosis for example, a female only condition, pretty common actually, causes crippling pain, heavy bleeding, bowel and bladder issues, infertility to name but a few. It is taking women on average 8 years to get a diagnosis.
Breakfast tv presenter Naga Munchetty has spoken at length about her awful experiences trying to get a similar condition, Adenmyosis diagnosed.
Women are having their pain dismissed as "women's problems" or that severe period pain is part of being a woman and women need to accept it. Medicine is still very paternalistic.
~But are there not many female doctors also
There are and they are often as bad if not worse. Sadly its human nature that it can be very difficult to have empathy and put yourself in someone's shoes if you dont suffer what the patient is suffering.
One of the very best GP's I have ever had MS and hypo, so she could empathise with symptoms like fatigue, pain, mobility issues. Unfortunately a lot of people and I include doctors, dont really understand how it feels until they or a family member experience it.
Its one thing to learn about an illness on an academic level, quite another to experience it on a personal one. Also I think a lot of doctors get very strongly influenced by their training, colleagues and peers and many suffer from compassion fatigue.
exactly, so its not a male/female thing
No it really is as this article shows time.com/6074224/gender-med...
And this physicians.dukehealth.org/a...
Did you read my post? My female GP was as bad at it as a few male specialists. And she was a caring professional in general terms. But there is no way in heck she is giving depression thoughts on males' physical issues so randomly, when it really is an unfound physical issue.
Arguing depression or all in your head to women way more often - & easily - is not only a male professional phenomenon. Unfortunately. That is how deep it runs.
I was one. All my life. Severe pain. Endometriosis only found when I was in a medical emergency at 47.
It is beyond ridiculous.
She was also interviewed on Radio 4 today - discussing inadequate and inappropriate treatments given for PN, Fibro and other chronic pain disorders
As a fellow Fibro sufferer, who has tried all the standard NHS drugs on offer I certainly sympathise. Chronic pain is a huge huge issue right across the world, not just Fibro, but other pain conditions, arthritis, migraine, IBS, chronic regional pain syndrome, chronic back pain, to name but a few.
The problem is doctors dont really know how to treat chronic pain effectively. Painkillers can help, until they dont. Opiate painkillers are highly addictive and actually can become ineffective as they arent really designed for long term use.
Then you are likely to be offered antidepressants as doctors believed neurotransmitters like serotonin and neuroephinephrine can help regulate pain signals so the theory was increase levels of these in the body and bingo pain decreased. Unfortunately the evidence of the use of antidepressants is very poor.
A Cochrane review, which is a review of all the available clinical trials concluded that only one antidepressant, Duloxetine, a drug designed to help Fibro and one of only 3 FDA approved ones, only had modest benefits. And a host of unpleasant side effects.
Similarly anti epileptic drugs like Pregablin, another one of the FDA approved ones was only shown to help around 40% of patients and again only modest pain relief was reported.
So this is where we are. There has been some research that shows medical cannabis can help but this is only available privately, often at great expense. I myself use Low Dose Naltrexone, which again I have to get privately. I've seen some scientists suggesting drugs like Ketamine can help but its hard to imagine the NHS prescribing that.
Then you're in the realms of trying to manage it via CBT, meditation, mindfulness, which may help some but its certainly not a guarantee. And dont get me started on some of the wild and wacky alternative remedies out there.
Bearing in mind that millions across the world suffer chronic long term pain in one form or another, ruining lives, relationships, families and careers its pretty crappy that in 2024 there's been very few advances in understanding chronic pain and even fewer new drugs or therapies. I guess that there's no money in it for big Pharma or its just not sexy enough 😠
She looks hypo to me …..fibromyalgia is often linked to undiagnosed or inadequately treated hypothyroidism
I heard that a study done on mice 😫 suggested fibromyalgia may be autoimmune?
Yes I mentioned it recently, a study by Liverpool University and two others concluded Fibro could be autoimmune, Queen Mary University also concluded something similar. It would certainly tick quite a few boxes, as we know AI mainly affects women, as does Fibro, it shares a lot in common with CFS, which is often triggered by a virus.
The symptoms, fatigue, brain fog, pain, headaches, joint pain are all similar to AI conditions like Lupus and Sjogrens. I find the autoimmune theory quite convincing myself. Of course the real test would be to offer Fibro patients immunosuppressants and see if they help.
Why do women get it all 🙈🙈🙈
Blame our XX chromosomes, one advantage of having a reactive immune system is we can more often than not fight off viruses, during Covid many more men died or were seriously ill. Women also have longer life expectancy. The downside is we are more prone to AI diseases precisely because our immune system is on high alert and mistakenly attacks our bodies.
Fibro is the lazy Doctors diagnosis because there are no clinical tests. Many with Sjogrens and thyroid disease are misdiagnosed and the tragedy is that unless proper investigations are done before coming to that bucket all conclusion, patients are labelled and then ignored making it harder to find and treat the real condition they have.
A good friend who is a doctor made this observation about medicine today: "If there's not a test for it, it must not be a thing." Especially if you are female, and if the doctor has no health problems.
I thought Dr. John Lowe conclusively demonstrated that Fibromyalgia could be treated effectively with T3. I studied his big thick book and it seemed persuasive.
I think we need to be careful about assuming everyone with Fibro is just undiagnosed or undertreated hypo. Undoubtedly there are those that are, however I've trialled Levo NDT and now T4/ T3 combi and there has been zero improvement.
In fact since getting diagnosed as hypo my Fibro has got worse. And I'm sure I'm not alone. On NDT I took too much and my FT3 was 18, made absolutely no difference.
Your right, we do need to be careful, but your a case in point. It would not surprise me if you have APS and Sjogrens and if properly treated for both your “Fibro” symptoms will suddenly start fading away. I can speak from experience on that.
Unfortunately it’s the luck of which Doctor people get to see and that does not exclude some so called experts as we know from Endo experiance. Unfortunately it usually means the patient doing their own ground work to find a Doctor that may be suitable in the first place and with luck they will then get to the bottom of the real problem.
You can only really rely on a Fibro dx if all the other examinations and tests have been done, a proper delve into your medical history and family (sometimes is helpful) and nothing else shows up. How often is that done?
I've had testing for Sjogrens and it was negative, I know you can have sero negative AI disease so its not definitive but recent RA negative antibody tests and negative CCP tests, as well as low ESR and CRP makes me think Sjogrens isnt the culprit. APS still is a real possibility and I'm hoping I'll get tested soon.
My real complicating issue is Ehlers Danlos, which strongly mimics Fibro. If I'm honest I'm more inclined to think many with Fibro or other similar conditions probably have EDS or joint hypermobility, which is underdiagnosed. EDS is another very poorly treated condition.
Sjogrens is really difficult. About 70% don’t test positive with traditional aPL tests - I didn’t but I had positive Schirmers and have large fibre neuropathy. I also suffer badly with gut issues and the arthritic side comes with a flare. Hydroxy does help. Recently it’s affecting my voice, which I always thought was thyroid but actually Sjogrens. Sometimes it’s difficult to know what affects are down to what but a short steroid course usually helps to calm things down.
I hope you get your tests soon as I think Hydroxy will help you too.
thanks for sharing that article which resonated with me as I’ve had fibro for eons and am convinced it is connected to Hashis and to constantly low iron stores so my muscles have to struggle with not enough oxygen. It has improved I guess because I’ve tried to really pace my life better and be more considerate as what I load myself with! I do take pregabilin which helps me sleep. I came off it a while ago and had a year of chronic insomnia so resumed taking at night time. I hate any medic who dismisses these kind of “conditions” perhaps they’d like to live a month in my shoes!
People ask do you play tennis, and similar. And it makes me realise how long it’s been since I was able to exercise in that way. Even a yoga class is often too exhausting. But it becomes a way of life, it has to, to find an existence and a way thru.
Hope you find your way thru too. 💜
thanks for posting the link, I tried to read it but it only seems to allow access so far. Does anyone know what treatment she had and by whom, she seems much better. My partner has Fibro and we have tried many things to improve it and she is a lot better but could do with being a lot better yet, I often read headlines about Kirsty improving but don’t see the nitty gritty of what she did to get better, any info most appreciated.
Kirsty also has RA as well as Fibro, I'm just guessing but often RA is treated with immune suppressing drugs like steroids and methtrexate. I think that people on the Fibro HU board said there was an interview on R4 with her. Maybe check it out.
Fibromyalgia is a central sensitivity syndrome. It is when your central nervous system becomes so sensitized that everything becomes overloaded. So what “normal” people feel, Fibro people feel 10 times worse.
It was described to me as a spinning top. If you can imagine this top as spinning with pain or sleep or whatever it is that is affecting your system feeding the spinning. In order to try to make the top stop and calm down you have to slow it down by taking each element that feeds it and concentrate on that until you feel you have it under control. By working your way through each element that’s feeding the top it calms the system and slowly stops. Basically that is what Fibro is.
It may be that another condition like Thyroid or RA is causing the problems that are feeding into the CSS. So it’s important to find out what they are and get them treated properly.
Well that was the old thinking, however new research that I mentioned above, at least on mice, seems to indicate that Fibro could be autoimmune in origin. Despite being relatively common there still doesnt seem to be consensus on what exactly Fibro is, what the causes are, what the best treatments are and if it can be avoided.
It certainly doesnt help that there are no definitive diagnostic tests, ie blood tests, CT scan and it remains a diagnosis of exclusion, ie when anything else has been excluded. Some research has been done using functional MRI machines which show hyperactivity in some parts of the brain, but other areas are underactive.
However is that is the original cause or simply an effect? Doctors know that chronic pain alters brain pathways and causes changes in the central nervous system.
In case anyone is interested, there have been some previous posts. Though they were some years ago.
‘Losing sense of self’: Kirsty Young opens up about illness on Desert Island Discs
healthunlocked.com/thyroidu...
Kirsty Young to take time out from Desert Island Discs
Eyebrows have started growing again : )
Need Advice Please 
Increased anxiety…
Menopaused. Would starting HRT mean reducing NDT? Has anyone experience of this please?
I’m fine. Really?
