hi guys does anyone actually know what causes fibromyalgia. I was diagnosed beginning of last year but was fine before I had my accident. I have never been the same since?
what causes fibromyalgia : hi guys does... - Fibromyalgia Acti...
what causes fibromyalgia
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Kazzza1976
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stress related incidents has been a big flag in research can be something recent or past but a lot been Said on this subject.
DizzytwoModerator
Hi there. this was the reply I gave to another member a few days ago who asked a similar question.
fibromyalgia has been known to appear suddenly after an illness, physical trauma, or significant psychological stress In some people. However from my experience fibromyalgia symptoms tend to appear gradually, and a specific event is not always believed to trigger pain and fatigue
Momo
I was fine before I fell. I fell in grancanairia when I got Off a boat and fell into 17 ft of water and banged my head on rocks as I went down and never been the same since
My ex husband had a heavy bag fall on him from a great height when he was at school and ever since then suffered - in particular from neck pain - and spreading around his body. In my case, I cannot point to anything that would have caused my FM. It might be my "bad back", which has now developed into something else.
I’m the same. I was diagnosed with Fibromyalgia but it was bearable then 4 years ago I was going to rope up the Narrowboat I had at the time, jumped off the roof, slipped and went crashing down onto stone. I’ve never been the same since either.
The list is as long as your arm, its a poorly misunderstood condition, lots of theories but no concrete evidence. Genetics,Childbirth and or pregnancy
Trauma, either physical, sexual or emotional
Major surgery
Depression and anxiety
Other chronic pain condition like arthritis, migraine, IBS
Are just a few risk factors. Its much more common in women and tends to often strike during middle age, but can happen at anytime, even kids can get it. The theory is the central nervous system becomes hypersensitive, over vigilant and alert and never switches off. Imagine a car alarm just honking constantly.
So every sensation becomes magnified and often the brain interprets this as pain, even though there isnt any injury or anything wrong. Other sensations like pins and needles, burning, crawling, itching are common in Fibro as well.
yes I get a lot of pins and needles and itchy legs. In alot of pain today maybe with the cold weather and sometimes tremors in my hands
You have had a lot going on which may well have depleted essential vitamins and minerals. Have you had tests and got the results for vit D, magnesium, vit B12, folate (B9) and full thyroid testing (TSH, FT4 and FT3) as you hit your head and that could have damaged thyroid. I'd suggest Datis Kharrazian's book 'Why Isn't My Brain Working?' which may be of interest to you.
Hi Kazzza1976.
Probably caused by your accident.
Stress, trauma, accidents, death of a close family member or relative. There are numerous reasons.
Mine I believe was the stress I was under at work at the time, about 10 years ago. I had a week off work and on the Sunday evening prior going back to work the right hand side of my body just gave up, I thought I had had a stroke, it was very strange, the the pain started and it just continued to move around my body.
I was lucky and had some good support at work but it still took me a year to get a final diagnosis.
Neil
good morning Kazzza1976 i do believe mine was through a fall i was fine until then. it may be the shock to our bodies 🌸
Latest research suggest that it's in the gut. Something to do with an imbalance of the bacteria in the gut unless that's just another symptom. Mine started after a very bad viral infection , 5 months later I started feeling unwell . Good thing is that it isn't progressive or so they say. What I have noticed is that my CRP is always high ( inflammatory marker) I wonder if anyone else has noticed the same, this suggest an ongoing infection process but with no identifiable location .
I am curious where you get that conclusion from. There has been some research that suggests the gut may be involved but there is nothing that is rising to the level of changing the CNS based theory of action within the body.
If you have consistent high CRP then I would ask for this to be investigated so that arthritis or other conditions are ruled out.
I believe there is a link with gut bacteria and Chronic Fatigue Syndrome, however its difficult to know if its cause and effect. And although CFS is a similar in some respects to Fibro and there's a lot of overlap, they aren't the same condition.
The truth is we simply dont know why people get Fibro, there are plenty of theories but not facts.
good morning, I completely understand I had a car accident and have been left with chronic pain, a number of conditions myofascial pain syndrome, thoracic outlet syndrome, pec minor syndrome, trigimenal neuralgia and subsequently fibro. I believe all to be as a result of the accident, being mis diagnosed and told whiplash being treated like I was just after a compensation claim, not listened to at all, and having such an emotionally challenging time as well as being in horrific pain all led me to fibro!
It’s all about management from here on in…..
Hi Kazza, There seems to be a common theme when taking into account other members conditions which tends to flag some kind of trauma. Mine started after I hurt my neck a couple of years ago. Also read somewhere that people who are autoimmune tend to get it too?... whether there's any scientific evidence about that, I don't know. I've got that as well.
Such is life x Take care
I think mine has come from a lifetime of trauma, with a few interludes of not a lot. I was sexually and physically abused a child by my father and brother, and bullied by an older sister, raped at 14, have had a string of controlling relationships of one sort or another, culminating in being with a narcissistic gaslighter, by which time I already had fibro but was undiagnosed. That 'relationship' ended in Feb 2014 and I couldn't trust myself or anyone else for nearly 10 years.
Then in August 2018, I found the father of my youngest 2 children dead in his flat, which was horrific enough. What was worse was telling his children and seeing their reactions, particularly my youngest son's, as he was a younger version of his father in many ways and they were very close. Then we had to clear his flat, arrange a funeral, ride of respect and a wake with no money and a very successful but guilt-ridden gofundme campaign and claim for bereavement allowance.
Since then I have just got worse and worse. I have a bunch of other conditions too and have a lot of pain, precious little energy and have been so depressed I felt like I was just waiting to die. I drive but can't manage long journeys, so I don't get to see my children much. Two of them live over an hour away so I don't see them unless they come to me and they all have their own lives and are busy of course.
Now, I seem to bounce from feeling like I've got a cold/ upset tummy and pain and extreme fatigue, to not feeling like I have a cold/ upset tummy plus pain and extreme fatigue. So I would say that mine is definitely originated by trauma and living in fight-flight-freeze mode for decades. I think I may also have adrenal fatigue, but not diagnosed. In my mind, I wonder if it comes from physically holding myself in fear induced tension for so many years, along with a lifetime of boring my tongue because if I spoke up, life was a lot worse? Who knows, but that makes sense to me. My body is exhausted by being riddled with fear all my life, hence fibro?
Biting my tongue...
I'm sorry is hopelessly inadequate. Can I suggest having a look at Micki Rose's website eg purehealthclinic.co.uk/heal...
Micki is lovely, so if you decide to phone her for a chat, I know she will try to help as best she can. I've done some testing with her and had some helpful test reports and chats with her, I've never met her. I have a book by her called '8 Step Healing Plan Recovery from Chronic Illness with mind-body medicine' which you might find helpful although prices online are stupid - the link above shows she has done another guide which looks to be along the same lines so maybe just an updated version and not quite so bad £. I also have her gluten book. She knows her stuff. Best wishes
My heart goes out to you and totally understand as I suffered trauma throughout my life with abuse (physical, mental and emotional )but thankfully not sexual abuse like yourself. I am so upset to read your story and I hope you are keeping yourself as well as can be. Thanks for the info about holding yourself in fear mode, it makes so much sense.
Sending big 🤗 hugs
I am so sorry you have suffered all these things I would agree that having lived in fear and trauma can cause fibromyalgia , ibs etc I do hope you can experience some level of peace and tranquility now
Hi Kazzza, I first experienced changes when I was pregnant was just thinking it was just high hormones that was making me sick. After I had my daughter I felt better but felt like something was off. It wasn’t until we moved to a much colder and higher altitude out west that I was finally diagnosed with fibromyalgia and chronic fatigue syndrome after first discovering a lump in my neck which was thyroid goiters and hypothyroidism. I have been involved in a early study on FM and CFS back in 96 which was a funded research study from 95-05 where they did extensive testing, studies and analysis on identical twins where one was sick and the other was healthy. I have heard so many different theories of what causes fibromyalgia from stress (physical and mental), Epstein Bar virus, neurological, faulty DNA that gets triggered in some way that causes the fibromyalgia. I’m not sure what they are…autoimmune disease….saying is the cause of it know. I haven’t been in the loop lately to know the latest research. But basically they don’t really know what causes it. If they did there would be a cure. I have had this for 31yrs. I would say get involved in any research studies that you run across to help in furthering the understanding and getting closer to a cure.
I believe I developed mine after caring for my elderly parents and working full time. I lost my Dad first then my Mum 18months later, I believed my body just crashed after that took me a year or more to get a diagnosis but I was so relieved to have a name for what my body had turned into. I also believe that my mum had it also she had rheumatoid arthritis and osteoporosis from an early age 30 but even a quilt on her she would say it’s too heavy and the slightest touch would pain her so genetics play a part I believe also
I have struggled to understand where my fibromyalgia started and it appears to be from Severe mould and damp on my property as I seen a video from a specialist which was the only relevance to how I could have developed something like fibromyalgia, I know when I explaining the damp it might seem like a little bit there was a leak In my property for Over a year and the council knew and took photos and 1, and a half years later they stopped the leak this was from 2020 and the leak was stopped may 2022, and there was mould in the walls from 12-13 years ago and asbestos. But it has triggered health issues in my baby who was about 3 old and now she about to make 5 years old next month and has suffered with bronchopneumonia since she was almost a year ans still having to manage it and they tested her for asthma and they said she is not asthmatic but I’mIn the middle of court case for the property as nothing has been done or repaired in the property and we now in 2024
snippet of the water and leak that was leaking across my property into my electric box
I do hope you win your case and can be moved. Are you aware also of PANS and PANDAS caused by exposure to mould and damp ? Do find out about this if you are not aware of these conditions which can cause terrible effects but I understand can be treated.
Fibromyalgia seems to happen to a lot of people when they’ve experienced a traumatic event. For me it was having a horrible Labour with complications. I started suffering with ‘reactive arthritis’ 3 months after my daughter was born. I couldn’t move from my neck down( didn’t have a clue what was happening to me. Only got diagnosed in 2018 after years of suffering.
An accident can cause Fibromyalgia , & an emotional shock can cause Fibromyalgia I have suffered with Fibromyalgia for 26 Years now , this year has been particularly bad , from New Year onwards I have had to spend time in bed EVERY Day ! xx
Winter is really bad . I have been in a lot of pain in cold weather don’t know where to put my body. Joints so painful
Have you spoke to the hospital you was treated at and asked if you have a TBI? (Traumatic brain injury) only mentioning as my daughter has an ABI (aquired brain injury) and she suffers with alot of the symptoms of fibromyalgia, pain, pins an needles,fatigue, ibs etc. Might be worth ruling that out.
Mine started after I suffered a stroke and had neurological issues. I am also diabetic and have hyperthyroidism. They say a lot of conditions are linked.
Hi Kazzza
There are a lot of factors in what causes fibromyalgia, depression, loss of a loved one, food intolerance, chemical intolerance. I found if I wore certain boots or shoes my leg pain would be bad. If I was waring a belt to tight I would be in so much pain, I found out there is a nerve that goes down the trunk of the body and if you constrict it there will be pain. I have done so much research on pain and why it happens.
Food intolerance, Gin has juniper berry in it which can cause inflammation in the joints. This is in Pimms which I was drinking one summer and was in so much pain. I did a lot of research on this.
mindfulness helps a bit.
Some pills help until the body gets use to them.
Hi Kazza, I was diagnosed with a brain tumour during covid and had to go through the whole process of being diagnosed over the phone and going to the hospital unsupported which added to the stress. I had to have an emergency operation to remove it as I was having seizures, it was very frightening.On the plus size the tumours out and I've made a full recovery except for the bloody fibromyalgia I've now been diagnosed with. I've retired early,57, and my husband has been a great support. Want to make the most of life now but my body won't play ball at the moment.
good afternoon. Unfortunately they don’t know what actually causes fibromyalgia what they do know is, it is triggered by major trauma, whether it be physical or mental. Mention you’d had an accident that may have been the trigger. It’s not a good condition to have. However, you must remain positive and not giving that’s half the battle finding your limits pushing yourself, a little bit, a good diet and exercise. For me the worst was the headaches I have found something called feverfew 400 mg, I take one a day I don’t get headaches anymore after having them every day. Most of the MEDS unfortunately don’t work for fibromyalgia they just create other problems and the side effects are not good. I’ve tried them all. My neurologist recommended LDN. if you put into Google how can LDN help fibromyalgia you will hopefully get the info you need on Facebook. There is a LDN research page which is brilliant and has lots of comments on there of how it is helping people however because it’s not licensed for fibro, you will have to pay which is around £22 per month. It is a very well received drug. It’s been around time is very safe very little side-effects and helps with lots of things from headaches pain fatigue brain fog. Inflammation to list a few. I really hope this information bumps you forward that little bit quicker to finding less painful life. Feel free to contact me again. If you need any more info I am not affiliated with LDN. I just don’t like people suffering. Best wishes good luck
Hi my fibromyalgia was due to trauma ,I lost my father in 2019 in April and I started to get pains after a month of his passing ,the doctor told me that a death of a loved one can cause it and I've recently got worse as I then lost my brother unexpectedly from a heartattack in 2022 in June so it can be triggered by stress and trauma x
I was told by occupational therapy that it is when the neural pathways becomes disturbed through trauma or illness and all the signals from the body become confused using the same pathways so pain and joy etc may become intertwined.
Then the body thinks it is broken and sends pain signals and misfires, saying parts of our bodies are damaged when they are not.
CBT and pain management can really help and the brain and body are amazing. We can reset with work and determination. Pacing and acknowledgement can reset the brain. However is is likely that because we have misfired we will again so learning the skills to rehabilitate and remembering them is important, also not getting too disappointed when you have a relapse.
I remember going to a Fybro cafe and wheeling out in tears, feeling patronised and misunderstood. Most of the people there where experiencing less symptoms, some were working some regularly swimming and going for walks. How? I thought and why am I experiencing worse symptoms. However years later after lots of therapy I realised that mindset was my problem, I needed help realising I had more power over my body, I have always been determined and not lazy person, of course I didn't want to be ill. I tried hard to "get on with things" that wasn't the problem. It was understanding how the brain works and fooling it. Research has been done on the vagus nerve and MRI scans show that threat causes flooding of three hormones. Cortisol, adrenaline and oxytocin. How we use these chemicals is dependent on if we acknowledge we are in threat mode and switch to self soothing. Athetes will channel their minds to help their blood vessels open and flood these hormones to help them win, when we are in threat our blood vessels contract. If we can use the hormones and switch off threat (pain, anxiety, self critical behaviour, like I'm fat, I'm useless, I'm a burden etc) and acknowledgement of when this is happening, first, second mentally step out of that, distance yourself from the behaviour or thought, then third, selfsoothe doing something you like, being kind to yourself, use the energy, have a hug, kiss hold your child or pet to use the oxytocin up. Go for a walk around the house or garden. To use the other hormones up and do some relaxation breathing to help open up those blood vessels and stop them constricting.
Also helpful is gratitudes everyday, if you buy a red jumper from next, you will probably notice others wearing the same red jumper, this is because what we introduce to our mind is then hyper focused on, therefore acknowledging what has been good in our day, like my socks feel so fluffy and comforting on my feet, or my daffodils are so pretty this year, anything small or large but just being thankful for them it starts to focus our minds. On good things and reducing the difficult thoughts, because we are acknowledging these and stepping aside from them. This can help to reset the fibromyalgia brain and be a step towards rehabilitation.
I hope that info helps
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