Trying to find out about causes of Fibromyalgia
Posted , 16 users are following.
Fibro has a huge range of symptoms yet nobody seems to know what causes it. I want to ask if anyone can remember anything significant happening before their Fibro problems started.
I sometimes read that it can be triggered by trauma such as a car crash or it can seem to begin after a viral infection. Can anyone here think back to when their pains began and then to a time maybe in the year or so before that when they underwent an operation, or were involved in some kind of accident or had an illness?
I'm not affected myself but I'm very aware that so many people are seriously affected by 'mystery' illnesses yet their doctors don't understand or don't want to know. I firmly believe that many of these 'mystery' illnesses are actually caused by some drugs that are prescribed in good faith! The doctors then make things worse by giving other drugs or they tell you it's all in your head and you're imagining things.
You are not imagining the lists of pain and suffering that I've read here and also in other sections for other illnesses. Many of you have been told you also have auto-immune problems such as lupus and I do believe many of these things are connected and some of them (not all) can be traced back to hospitals and drugs, particularly antibiotics.
If you can help me by posting anything you can recall about the beginnings of your problems - along with anything that happened in the months before that - we may be able to find something that the doctors are missing.
N.B. I'm not a journalist or any kind of therapist. I'm not trying to make money or make fun of serious conditions such as fibromyalgia. I'm concerned about the possible causes and feel not enough is done about trying to prevent others from suffering in this way. Please reply if you can.
0 likes, 30 replies
nakai25859 miriam65408
Posted
mine seemed to start after i started macrobid for a uti that actually was never a uti. 3 urine tests proved no bacteria in the urine yet they still told me to take the antibiotic. however, i have not found anything that suggests macrobid has lasting side effects.
miriam65408 nakai25859
Posted
Thanks for replying. I've heard of various problems from macrobid (nitrofurantoin) and it certainly can have lasting side effects including peripheral neuropathy. Also mentioned are a "lupus-like" syndrome and arthralgia/myalgia - amongst many other things. Are you familiar with the Rxisk website? They tell it like it is about prescription drugs whereas most other sites simply say what the product leaflet says.
nakai25859 miriam65408
Posted
actually, i have also wondered if these symptoms have been brought on by hormonal changes (perimenopause).
Oompa miriam65408
Posted
Mine started after a stress induced issue at work, prior to that wasn't on any medication in fact hadn't seen a doctor in years. I've always suffered from neck, shoulders and back pain due to years in retail and adopting poor manual handling processes, I always had a high pain threshold. Anyway I agree fibromyalgia diagnosis is a cop-out for doctors, but at the same time it is being recognised for what it is finally.
miriam65408 Oompa
Posted
Thanks for the reply and I agree, it is a cop out but at least it IS a diagnosis, even if the doctors don't understand it.
I think people underestimate the debilitating power of stress which can create all kind of havoc in the body including inflammation and this can then lead to things like Rheumatoid Arthritis.
Are you saying you only had medication when the stress started? May I ask what you were given at that time?
Oompa miriam65408
Posted
I was prescribed meds for the immense and unbearable pain caused by the stress. I was on so many different medication, naproxen, tramadol , gabapentin, amitryptaline to name a few. I'm currently on paracetamol dihydrocodeine which I become addicted to, and nortriptyline to help me sleep. I thankfully recognised a problem but you'd think the GP would recognise that I've been on it too long. I see a counsellor now to help manage causes to the pain.
smc187 Oompa
Posted
ive beem/and still on all them apart from the gabapentin.
the dihyrocodeine didnt agree with me i was hearing voices ans everything
i went private to see my consultant as the nhs lists here in northern ireland are out control.
he started me on a drug called pelxia its for fibro and serve pain. works kinda of like tramadol but no where near as bad. something to look into for u maybe. theres major problem heres with gabapentin young people buying them on the streets. its the new it drug here thats why ive not accepted it from the doctors. there suicides nearly every other week and its linked to.
sorry to say that. hope u get through this tough time. i understand i had to come of tramadol cold turkey on my own after fighting with the gp as i felt i was gettin dependant on them. needless to say i changed Gp
Oompa smc187
Posted
thanks for this, yes the gabapentin and another med gave me night tremors and I lost my appetite as well as sense of taste, gp said I should give it the full course but after a week I said no way. relieving stress definitely helps. But not always easy to do. these forums are a saviour for me as a channel to vent, discuss, share and learn.
jill63888 miriam65408
Posted
I'm not sure what started mine but my mum had been ill for a long time and had died just before I started with symptoms. I also had a tick bite around the same time.
The symptoms are numerous and appear to affect every part of my body. I'm not able to say which of the symptoms is better or worse than any other but the whole syndrome is painful, confusing and completely mystifying . I spend many hours researching but have not found any reasonable explanation.
miriam65408 jill63888
Posted
Thanks for your reply. Is it fair to say you were very stressed around the time your mum died? I've just replied above about stress possibly leading to many things including rheumatoid arthritis so it have had something to do with it.
With the tick bite, are you saying that you think you may have Lyme Disease? I know this can cause all kinds of symptoms including arthritis or intermittent pains in tendons and muscles, and it can keep coming back to haunt you. Its symptoms mimic many other illnesses but then you're left with the question 'what's in a name? ' All over pain is pain whether it's Lyme or Fibro or whatever.
Good luck with your research and I'll post here if I find anything.
Actually, I did just find this (you may have seen it) on lyme disease dot org:-
“Lyme disease is actually caused by your immune system,” explains Pal. “This bacteria (Borrelia) wins the first battle, and your body overreacts so much that it causes intense inflammation in all the joints and areas that the bacteria spreads by sending so many reinforcements to kill it. Borrelia is then killed, but the inflammation remains and causes many of your symptoms for Lyme disease."
anne37365 miriam65408
Posted
Hi Miriam,
I am age 61, female and have truly struggled with fibromyalgia since I turned 40.
At age 17 I had a severe case of Shingles, then again a second bout just before i turned 40. I often wonder if FM was triggered by the Shingles? It's the only illness I've had
in my whole life apart from Chickenpox at a very young age and a mild bladder infection at age 50 when I took Amoxycillin.
Hope you find a common cause for FM, well done you for trying!
miriam65408 anne37365
Posted
Hi Anne and thanks for replying.
Shingles is very nasty and I think you were young to have it at 40 let alone 17! Also a second bout seems unusual so maybe your virus was particularly virulent - or do you think your immune system may have been weakened at all?
I was reading on another forum that it can damage the nerve fibres which leaves you with lasting pain - and some comments were from people who say they've had severe pain where the shingles was, 10 years ago in one case. Does this sound like you or is your pain more of the all-over (Fibro) type?
I actually don't think I will find a common cause as already there are so many variables. I think our nervous system is a marvellous thing that keeps us safe from harm when its working well and causes us immeasurable pain when it's not!
baraba miriam65408
Posted
Hi! I am also not a fibro sufferer, but am very much interested in it and have spent quite a lot of time researching it. If you ask me, the reason for developing fibromyalgia is the disorder of autonomous nervous system. The mechanism of pain generation is such, that the ranges of ganglia dealing with the signals of sensors for position, pressure, pain etc. get shifted towards down, so all the normal signals, that are coming from the periphery of the body, are temporarily out of the range, are sensed as too strong and cause pain. The same happens with other sensors - people suffering on fibromyalgia are often sensitive to loud sounds, which also can produce a sensation of pain in such people, while being not unpleasant for the rest of the population. I see it that way ...
miriam65408 baraba
Posted
Thanks for the reply - and it makes a lot of sense. I've also been reading about centralised pain syndrome - which is perhaps similar to what you say in that extra pain receptors get roped in and all pain signals are intensified.
I'm mainly trying to find out what kinds of situations trigger it. Adverse reactions to some antibiotics can include peripheral neuropathy and also musculoskeletal pain - which can be permanent - and which might be diagnosed as Fibro (for want of a better diagnosis). Tonight I'm learning that stress may be a factor and then there is the auto-immune system as well.
It's my belief that there are many things that can cause chronic all-over pain along with many other symptoms, what worries me is that there is no cure.
Good luck with your research!
chris78293 miriam65408
Posted
Very good question, ive asked this in multiple different forums and all people never responded and i often got responses like im not a gp or specialists yet there only giving temporary relief drugs with side effects.
Mine was probably brought on by a bad gut aka leaky gut and years of abuse can lead to multiple symptoms layering upon each other, or over exercising causing cell death, either way the cause can be environmental, toxins, leaky gut, too much exercise, and the rare gene in like 1 in 100,000s to get it.
I've had good results with ewot and resistance band training, even trampoline bouncing is a good one, low impact exercises which stretch muscle fibres and give the body more oxygen.
I know how i felt at particular stages and now because i abused my body before without the knowledge i have now i have to be like an athlete just to cope, perfect diet, lots of good supplements, lots of magnesium and potassium, if i could go back to how i felt 2005-2009 this would be very easy indeed so hopefully the knowledge we have on this forum can reach people in the early stages, when the bodies been battling it for so long you get things like gene mutations and chronic fatigue syndrome and your body is basically dead and it'll take a lot of work to recover.
Things like ewot and good diet help, but fasting and autophogy is a good start to eat the old waste in your body and start recovering.
Don't go down the vegan or fruit shakes path, did that for nearly two years, pointless indeed.