I just got home from the Musculoskeletal Clinic. So found out today that they now think fibromyalgia is caused by a hormone/immune disorder because they can inject it into mice. Mice aren’t making it up are they 🤷🏼♀️ Anyone else heard about this? It’s new to me.
Finally got proper diagnosis today and cried because they can’t make me better and it sucks that this is my life now. However my blood count and vitamin levels are excellent so there’s that 😕 Hopefully there’ll be a proper test soon so we won’t get classed as malingerers any longer.
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Brigga
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This research is only looking at one possibility of a cause, but it has not been confirmed and further research is required to peer review and replicate the studies (to see if they get same answers)
The media often portrays early stage research as having found the answers - but often this is simply poor representation of what the study actually says
just to add to what Hazel has said. The initial research is promising but is not conclusive. Also I am not sure or do not remember it mentioning a hormone element but the immune aspect was autoantibodies and this is what they transferred.
still quite a ways to go.
hi I was told there is a link between thyroid and fibromyalga I was diagnosed a few months ago with borderline thyroid (under active) antibodies tested positive so they have put me on levothyroxine currently still on 50 mg then I was diagnosed with fibromyalga on 10th of this month I have been told these are similar in symptoms not sure how true this is as this is all new to me
I guess it’s early days in terms of research. My thyroid function is fine but I’ve had migraines since primary school and endometriosis and severe back pain since my early 20s. I’m convinced it’s all linked somehow .
I got diagnosed with underactive thyroid 3 years ago, but have had Fibro for 16 years. There seems a lot of overlap between the two. I also have hypermobility and need B12 injections. Its literally impossible to know which health problem is causing symptoms in my case.
very true I was told I had ostopenia some years ago and beloved this was the cause of pain only to told recently that this condition doesn’t cause pain and I said to doctor if I am in pain that this is wasn’t causing the pain he did no it doesn’t anyway now I’d diagnosis although it can’t cure me I felt a like better with just the knowing what it as
If you just go on symptoms, there's a great overlap with very many, various diagnoses (tho fibro can often be a comorbidity of hypermobility).
Many women have an underactive thyroid, & there's a greater preponderance of women that have fibro (& also hypermobility). I have Chiari 1 Malformation, yet researched fibro 20 years ago as the symptoms were so very similar, & many with Chiari 1 Malformation had been previously misdiagnosed as having fibro.
Symptoms can be so very similar, as mentioned; I have many that are like fibro too & have the hypermobile type of Ehlers-Danlos Syndrome (& also an underactive thyroid).....it really can be difficult to work out which diagnosis is causing the most problems!
I have HSD (though one GP wants me referred to rheumatology because he thinks it may actually be Hypermobility type EDS). I’ve recently had fibromyalgia added to the list after a really bad pain flare last October for no discernible cause. Just moving hurt! I went to bed at night feeling OK and woke up next morning in a lot of pain - and it wasn’t pain I would associate with HSD.
Things are improving at the moment. I’m used to doing exercise and I’m finding that a regular routine of that is really beginning to help! But of course it is summer, so it’s warmer and I’m well aware that things might get worse again come autumn/winter and the colder weather.
If this latest study is backed up by other research it could be promising for potential treatment, but it may also be that what works for one individual with Fibro may not work for another. From everything I’ve discovered thus far there’s still a lot to be learned about the condition. And whilst I hate to put a dampener on this one of my other medical conditions (asthma) still isn’t understood that well, despite being common and having a lot of research done on it.
Sometimes i wonder as both hEDS & HSD are managed similarly, why such a distinction was made, tho HSD does sound better than Benign Joint Hypermobility Syndrome (the 'benign' thankfully being later omitted).
As my last GP said to me years, ago a syndrome is just a term bringing those with similar symptoms under the same 'umbrella.' The same can be said of fibromyalgia syndrome. My GP also had faith with me when I said Chiari 1 Malformation has to be associated in a few of us with hEDS; he said in 10 years time this will probably be acknowledged......he was just about right!
I find I learn more about EDS from the Chiari specialists in the USA, & yes, their views have changed over the last 20 years, & the last 10, as they are learning more all the time. The same will be true of fibro, as medicine is changing all the time.
As a long-retired physio I'm pleased that exercise is helping you; I'm fairly sure it's helped me maintain my mobility. You're right of course, what helps one person may not help another in managing a condition, perhaps due to the fact that we're all different even if we are under the same 'umbrella.'
My chiropractor said I have some hypermobility but I can't do things with my hands and so on that you find when you look it up, so I don't know where I have it or whether it causes any of my pain problems.🤔🤔
I had 6 monthly injectionsof Vit B12 hoping it would inrease my energy -even by a little bit - unfortunately it didn't do anything for me. Hopefully, they have helped you.
I have underactive thyroid and fibromyalgia I was diagnosed with fibromyalgia in 2014 and a year later with under active thyroid both illnesses mimic the same symptoms it seems
Roanne, back in 93 I noticed a lump on my thyroid. Back up to 92 when I was pregnant with my first baby I thought it was high hormones that was causing me to be sick 24/7. After I had my baby I felt better but felt something was off. So when I found the lump in my thyroid I went to the doctor and said see this fix it and I will feel better. He tested my TSH and it showed hypothyroidism so prescribed synthroid but I still felt off. Long story short after seeing several doctors and numerous tests I was diagnosed with fibromyalgia and CFS in 94. I know several of the symptoms over lap for hypothyroidism and fibromyalgia. I’m no sure if there is an official correlation between the two but I haven’t herd of it before.
Thyroid medication has given me my life back (diagnosed with fibromyalgia in 2006). If you are borderline hypothyroid, do not let any doctor tell you the TSH test is all that matters. Get a full set of tests!
I heard about that too. I heard it from B.I.R.D on a podcast they did about fibromyalgia. I think it was a series of 3 podcasts. B.I.R.D (Bath) have a website which is a useful place to get more information on fibromyalgia and other rheumatology related issues.
Cbt is the answer according to medics, it would be great if when they told us that they got pain from head to toe for the day.talking therapy is for mental health,pain clinics are a joke in my opinion!
desquinnPartnerVolunteerFMAUK Trustee in reply to jhorsf
CBT is just another tool but that does not mean it is not the right one for some people. Probably not on its own. But when catastrophising or anxiety/ stress are significant elements then it could be very useful. Most people need several tools to make a difference and we definitely need a bigger toolkit.
But it is not the answer to discard tools due to what they are called, where they come from, or other reasons other than there is not an evidence base showing they are useful.
"talking therapy is for mental health" Yes. But...... mental health has been shown to modify how we perceive or experience pain. Also, aspirin is for pain.... but also for angina / heart health. Tools can be used for more than one thing and sometimes we use a less perfect tool due to not having a better one available.
Some Gp's want to take away pain meds for some patients as they will say pain clinic is what they need , what treatment will they get at the pain clinic, cbt.
There is very little treatment. It's mostly educational, or it was in my area.
desquinnPartnerVolunteerFMAUK Trustee in reply to jhorsf
There are studies that suggest that we do not have good enough evidence for the benefits of some of the meds that have been prescribed for fibro. Also there is evidence of harm as a result of some of these meds. This was behind some of the guidance recently issued by NICE and why some doctors are counselling against some medication choices.
We have issues as a charity with this guidance but we cannot argue against the evidence that polypharmacy or long term usage of strong opioids can be bad for people. So it is not a simple choice for patients or GP's.
But pain clinics are giving med options like infusions and some of the previous medication choices. Alongside this there are elements like CBT, movement and stretching, nutritional / lifestyle advice and other things. But there is not a uniform pain clinic and it varies according to what services are in what area and the philosophy of the clinic. Also pain clinic, pain service and pain centre may be different things.
If I am thirsty then water is the answer but not so much if I have broken my leg. This does not make water bad. And CBT is not bad. it may not be for you or may not be for you at the moment but it can and does help and can be part of the toolkit.
I’m trying to avoid meds as much as possible. From my experience with migraine they only work short-term and then you have to keep increasing the dosage. I never had a problem with my weight until I started playing Guinea pig with various meds. So many have weight gain as a side effect not to mention all the other problems they cause.
desquinnPartnerVolunteerFMAUK Trustee in reply to Brigga
the side effects are not a certainty. I love migraleive as they have saved me many a time and while I do not get migraines as often now they help me avoid them 95% of the time. They have stopped me having to look at the new options for migraines that have a preventative action, This is an area of medicine that has really moved on in the last 10 years.
I am not pro or anti any tool / med and would try things rather than not. Spoke to many people in my time with the charity and fibro meds work in about a 3rd of people. Different people different meds may work. So our poor experience with meds is understandable if 2/3s are not going to work before we start. But if you find one that does then that could be you doing more hours in work, enjoying life more with family or running that marathon you always wanted to.....
doesn’t work for me. I’ve literally been through the entire list including all the preventatives and off labels. I’ve had migraines since primary school. Pizotifen is the only one that worked for a few months then stopped working. It’s also an appetite stimulant unfortunately.
Perhaps of interest to you jhorsf? - I've been looking at Podcasts by/with Dr Daniel Amen. He rejects 'mental illness' as a term and talks much more positively about 'Brain Health'. He chose to become a psychiatrist because he was shocked to realise that no-one in that profession had ever really 'looked' physically at the brains of people with disorders termed as mental illness in a way that would explain why certain parts don't work ie... his more functional medicine approach was to look at how blood flow and nutrients the brain needs to work, or do not, work together in the human brain. This requires a special type of scan which is mentioned on his website.
Seems to me as if the country that encouraged us all to eat junk food in the first place, is coming up with some deeply thought out approaches to medicine by people who want to resolve health issues rather than profit vastly by them. I agree, the 21st century is time for the jokes to be over.
My experience is my local pain clinic tried very hard to be helpful and we trialled multiple treatments like TENS machines, steroid injections, acupuncture but really there was very little they could do for pain that a) is very widespread and b) moves about and changes from aching to burning or pins and needles. In the end I called it a day.
My thoughts were they could probably be very helpful if you had a trapped nerve in your back or an arthritic knee,ie pain in a certain place caused by a certain issue. But the pain of Fibro is beyond their expertise. I'm going back probably 15 years and things might have changed/ moved forward but I've never bothered going back.
I’m waiting for a blood test for coeliac disease and apparently a lot of the symptoms for fibro are similar, widespread pain, ibs, gerd, fatigue etc. really hopeful for a positive result as I understand that coeliac disease can be controlled with diet. I’ve been treated for fibro with all the accompanying medications for over 13years. The blood test was prompted by an escalation of bone loss shown on a recent decade scan. Go figure👀👀
When I was much younger, I always believed that all my health problems were hormone related, and I had an early menopause too with a progesterone deficiency. I no longer get migraines but I can't sleep without help.
I’m sure it’s all related, I had a cancerous thyroid removed 30 years ago, I have never felt fully well since, although my fibromyalgia was diagnosed about 12 years ago I think I have probably been suffering for at least 25 years. I am currently coping with my second frozen shoulder and was surprised to learn that is also a thyroid connected condition! Who knew?
I wouln't wish this on my worst enemy. The fact that some people refer to us as malingerers is so cruel. As my friend said who is suffering terribly with it - if you have cancer - you either get cured and are in remission or you pass away. People wouldn't dare call anyone with cancer a malingerer, but most of us suffer from this debilating illness 24/7 and usually get zero empathy or sympathy - even from close family members as there is not enough information about this condition to make people aware . There really ought to be more public awareness about this. This society seems to worry about the welfare all kinds of groups, but people suffering with Fibro are more or less abandoned by doctors to deal with this alone. I wish you lots of strength on your journey with this.
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