Fibromyalgia Action UK
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What do you think has cause your fibro?

Personally I think stress (or emotional trauma) longtime has caused mine.

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If only we knew, mine came as secondary after being diagnosed with RA. We've all been through things in life so I think if it was stress/trauma everyone would have fybro, some people go through truly terrible things yet it doesn't effect them in the same way.

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i've no idea what started mine off, had no trauma/ history as such, was just a pain in thigh, then progressed to present day,

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The cause of my Fibro was multiple factors. Existing OA ,stress, and viral infection. I had Fibro undiagnosed for years like many others. It is only looking back anyone can analyse where was the birth of their Fibro.

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I have a feeling I might have had it in a mild form since childhood but always managed to carry on regardless. I then had one of those very stressful periods looking after my Mom and a terminally ill friend, another close friend dying. Then mother in law and brother in law becoming ill and then my husband having a complete breakdown and having to give up work being refused ESA and having to help him right that decision. There were also negative changes at work. I struggled on for a year with increasing pain and fatigue and eventually had to give up work. I am sure that all these events had a contributing factor.x

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It sure does sound like all these traumatic events were precursers to your fibro. Sorry you've experienced so many of these events. xx00

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Bless you. I believe stress was a big contributor too. Like you I spent most of my life caring and worrying about other people. Now when I've changed my life and have time to myself this blasted disease has caught up with me. Life can be cruel. Sending love xx

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Hi WorldOHurt

😊🌸🌿🦋

I’ve had illness from birth and the near fatal closed head injury at age 7. I’ve battled illness all of my life. Things got worse after traumatic head injury.

😊🌸🌿🦋🤗💗😘

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Sorry to hear that you've suffered from such a young age. I was 62 when my fibro came on full-blast....but I had many episodes throughout my lifetime where I felt like something in my body short circuited and caused much pain or weakness. But then it would go away until the next time.

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Sooo sorry to hear you’ve had a lifetime of suffering too. Amazing how many of us there are. How are you doing at the moment???

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I have pretty serious fibro. Lately, since I switched to ER form of tramadol it seems a bit better. I do feel like I should be able to up my tramadol dose a bit and that might help me determine if I have grown tolerant to it. The doctors point to drug induced hyalgesia (the drugs causing me more pain) when in fact I feel like drug tolerance is the problem. I'm retired to don't have to work but is confusing to me that some of us still work....I couldn't even if I had to. But I guess we are all different in the degree of fibro we have.

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Sorry about your serious fibromyalgia. I was diagnosed as severe fibro in 1992 but had the symptoms since my late 20s. I was taking Celebrex for my FM but my primary doctor took it away from me. I’m afraid to take pain meds as addiction runs in my family. I’d rather suffer the pain than the horror of what addiction would do to me.

I’m medically retired and like you could not work if had to. I don’t understand how those who have it work and juggle raising young children and caring for the household and a hubby too. Youth does make a difference but with this disease I’m not sure that’s even relevant.

You’re up early or not sleeping. How are you st the moment???

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It's only 9:53pm here in Nevada. I am OK at the moment but I seem to do better at night, My worst times are when I first get up after sleeping....an oddity since we are supposed to get good sleep but I can barely walk and pain is much worse after rising.

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Ohhh I’m in Michigan and it’s 12:58 am Nice to chat with someone in my backyard as opposed to across the pond.

Sorry you have pain and difficulty walking after sleeping.

My worst time is after dark or anytime humidity rises due to my inherited Erythromelalgia.

The more humidity the more intensely I burn all over. I hate this combined with all the other conditions I’m just existing. But I could always be worse and so grateful and thankful I’m not.

How long does it take until your pain lets up enough to walk ??

I can remember that experience myself it sure was hard. Poor you. Sending you gentle hugs 🤗

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It can take hours to be a bit better. I am pretty atrophied due to being immobile for so many years....very weak. I have had a good night and was able to walk to the corner (without too much weakness or pain) with my daugher and grandaughter and their dogs....on their way home and they just live a bit around the corner. Most of the time I can't even venture out to do that and I'm so slow you'd think I was 100 yrs old.

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Oh sweetie I’m sorry about your constant pain levels. That’s so taxing on your systems. I can understand your not being worried about addiction. I was horrifically traumatized by 5 addicted loved ones that abused me so I won’t go near opioids. Once in a while I take ibuprofen for a headache but nothing else except Gabapentin.

My Mom overused aspirin and can’t take any pain meds or she gets dangerous migraines. Poor dear.

I can relate to your atrophy problem. I’m that way too now. My mostly immobility has started osteoporosis too We just can’t seem to win for losing.

It’s nice to have your daughter and granddaughter living so close. At least they can come to visit you and that’s great.

You know I get that feeling like being 100. I have even told my hubby that I feel like death warmed over some days. Ha ha.

I hope you find some relief soon. Hopefully someone is researching something to improve fibro sufferers. Wouldn’t that be wonderful...we can dream about that day whether it happens in our lifetime or not???

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I just had to look up Erythromelalgia....what a horrible sounding disease. And you have fibro on top of that?? Sooooo sorry for you! I have addiction in my family also but taking opiods does not scare me. I can't imagine being without them, and I am on a relatively low dose of each. My pain levels vary through the day....but am never without pain. I'd say my worse has been 9-10 during flareups but I generally am about a 6-7 on a normal day.

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I assume you must have about the same humidity levels as Minnesota ( I was born there) all the way down through the midwest into Okla. and Texas. I am so glad I don't have to go through that as I've heard it really affects fibro people.

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Michigan never had these current humidity problems back in my childhood. Just a few times each Summer. Now the air gets almost unbreathable. When our temps get above 100 and 80-90% humidity you simply can’t breathe outside. I truly hate those days as combined with my IEM and Sjogrens it makes me suffer so much. Global warming has really damaged our precious world 🌎 and how it breaks my heart at all its destroying.

I have a dear friend that lives in Fergus Falls MN. The horror stories I’ve heard about the Winters there I don’t know how any living thing survives it.

Sorry it takes me so long to reply. I’m having blurry vision and keep hitting the wrong keys coupled with the phone hi jacking my words it takes forever to write something anymore.

I hope you’re not living near any of the wildfires out West.

😊

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I can't imagine how I could take care of young children!!

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Perish the thoughts. Ughhh!!!

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It's been nice chatting with you....am off to watch a little t.v. before bed.xxxooo

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I used to do sports a lot long Jim thz

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Do you think injuries from the sports is what caused your fibro?

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Now that I know how fibro feels, I'm pretty sure I had symptoms as a child, then again as a teenager. I seemed OK in good health right up to 50 when my partner was killed in an accident and I can now see fibro kicked in after that. I was so traumatised by the shock and after another sudden death 5 years later fibro seems to be here to stay.

I wonder if it was there from childhood but while I managed my life well ( worked full time, usually doing 60 hours a week plus, had plenty of energy) it stayed damped down. Trauma made it flare up and it never went away again--- just my theory.

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Hi All! I'm fairly new here and after having symptoms for many years, and not imagining they could be linked to each other was diagnosed with fibro about 3 mths ago. I'm 64 and despite keeping active and walking our 2 cocker spaniels regularly, have an arthritic condition + bulging disc in neck and another in lower spine so was already on gabapentin + painkillers. That is down to wear & tear of course, but the fibro symptoms I can definitely trace back to having been through 5 miscarriages in 5 years. Despite already having 2 children I can't describe how badly it affected me. They were all traumatic, one particularly both physically and emotionally. My brain seemed to put my life to one side while it dealt with it rather like when I went into medical shock and the vital organs begin to shut down. It's always amazed me how the body and brain's defence mechanism kicks in almost like anaesthetic. It took a long long time to get over but I'm convinced I'm evidently still paying the price. We made a big leap by moving from Rugby to Yorkshire Dales in September to 'live the dream' with husband retiring in 3 years time. It's beautiful, we're so lucky, but the process was very stressful with certain loved ones playing havoc with the already struggling conscience! All resulting in symptoms worse than ever. On a positive note, new doctor took time to investigate, diagnosis, result!

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Oh Wendy-Loo....that is so horrible to have so many miscarriages! Each one being such a traumatic event. I can certainly see where you might have fibro after all that. You are very lucky, though, to be able to walk your dogs....many of us have walking problems. Or maybe the gabapentin and pain meds you are on are really doing a good job for you. Hang in there and hopefully you can enjoy your retired life. xxoo

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Totally agree. Marina

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Thank you so much. I think this form of support is a brilliant thing! It not only puts your own situation into perspective, but the relief of having connection with other sufferers is priceless! We may be behind U.S and Europe but I can't help feeling that a better understanding and awareness is slowly moving forward. Since my diagnosis, what few people I've spoken to have either experience or know someone who suffers. There's a lot of it about making it harder to be ignored! The old school, sceptical generation of doctors are not going to be around forever folks!

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I think for me it is down to my Thyroid, the better my thyroid performs the less pain I get from Fibro, I am relieved to say its the best its been in years : >

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I went through a massive trauma 4 years ago and I became unwell with m.e and fibro 2 years ago. I think the body just breaks down.

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Definitely stress - awful divorce, my mum had cancer, and then I was attacked and then damaged my sciatic nerve - became housebound and lost all my confidence all in one year - overload - hair fell out, allergies , fatigue came - and then 5 years later (after many tests) I was diagnosed with fibromyalgia - I knew for a long time before I was diagnosed that I had fibromyalgia -. Keep your stress levels down guys!!!- neese. X

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Neese I agee with you divorce was the hardest thing I ever went through.

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Happy now though - new hubby new life (shame about health!!!) Take care neese. X

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Good to hear neese. Glad your second husband is loving and caring. That you are happy with your new life.

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Mine has been out down to fracturing my Ankle in March last year. I then had 2 bad water infections in december and go said that's what started things off.

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I don’t think 🤔 that a cause has been fully known. Mine started up when I was pregnant🤰🏼but I got my sister and I involved in a twin study where one is sick and the other was healthy. We had to be identical and the first day out there in Seattle WA the drew a lot of blood (16tubes or more?) it was a lot, but they tested to see of each set of twins were identical. I had kids my sister didn’t. Other the healthy one had twins and the sick twin didn’t have kids. This was in 98, I don’t think they were able to find a common denominator. There are a lot of theories out there but none I don’t think has been fully agreed apond as to “this” caused fibro. I’m involved in another fibromyalgia and CFS/ME study which is looking at a autoimmune disease and checking different biomarkers in the blood to help or hoping to find a cure. This is through the website PatientsLikeMe and DigitalMe sites have teamed up with research doctors who are doing the study. The more research studies done the closer they are at finding the cause and finding a cure or better cure. There are some research done that show promise in finding that the tuberculosis vaccine can cure fibro and could be seen available early next year, another study is showing a gut bacteria could cure fibro. Those are the ones I know of. I’m sure there are other studies out there that I am not aware of. 🤷🏼‍♀️😊💕🦋🌸🌿🤗

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Very interesting about the tuberculous vaccine? Let's pray that more studies will soon be done. I didn't know about the Fibro blood test either. Thanks for posting this.

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You are welcome 🙏💕🦋😊

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Good morning

I am not a doctor and have no medical training however I have come across some very interesting research which I feel has helped me understand Fibromyalgia.

Dr Murphree wrote a book called Treating and beating Fibromyalgia and chronic pain. He explained when we are low on Serotonin then "P" substance in the spinal fluid runs rampent eg you are more susceptible to pain. When you have high reserves of serotonin then it blocks the "P" substance!

I do beleive a traumatic event can cause so much stress in the body where the "P" substance takes over and suddenly you hurt from head to toe - standing, sitting or anything touching you can cause pain. Even heat, cold, too much light or noise - every sensory nerve in your body is heightened and you want to scream. From brushing your hair to holding a pen or even typing - absolutely burns with pain!! Just placing your foot to the ground radiates pain through your legs to lifting your arm or holding a cup of tea!!!! It is like a stream of acid has been poured into your veins and you do not know which way to turn. Even your face hurts as it feels like every nerve in your teeth is being crushed.

So my understaning is that the chemical Serotonin is very important to block this "P" substance. But we live in such a stressful world and very few of us sleep well - Serotonin is produced when we have deep sleep. Very few of us eat well as some foods help us produce Serotonin eg turkey. When we are low on energy we sometimes eat too much carbs and sugar where Serotonin kicks in to tell the insulin to get rid of sugar in your blood stream. Many Fibromyalgia suffers also struggle with IBS where we do not absorb nutrients - Serotonin (I beleive I have read this) this is produced in the gut and transported to the brain- Serotonin is our happy chemical!

Sadly many Fibromyalgia sufferers because of all the pain suffer with depression - pressed down by the pain!! No wonder if we are dealing with widespread pain where we do not sleep well, overwhelmed with stress because of it then it becomes a vicious circle.

I have gained some relief from 5HTP where it boosts Serotonin and melatonin- Holland and Barrett £15. Also I have gain knowledge to improve my eating hanits listening to Richard Brice on Facebook - followed his 7 day plan trying to cut out gluten, processed food and sugar - I have lost some weight and have less brain fog!

So what caused Fibromyalgia for me?? About 15 years ago we were living in Germany. My husband was sent to the Falklands suddenly! No time to adjust and our family struggled terribly - my young girls and I cried a lot!! We were very lonely and isolated! Then the vicious circle started - no sleep - not eating well - stressed out - then the pain poured in and my body felt wrecked causing more stress!! My husband was away for 6 months.

It is hard to turn the clock back as the damage to my body has been done. So I try and manage the condition as best I can. Like many I have good days where I cope with the pain and days where I could curl over and not want to face the day! But I will always say be hopeful because tomorrow is another day and we hope for less pain.

Take care. Be kind to yourself and try and have a little happiness break through each day xx💕🌈

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I've heard this before and it's the one thing I've never researched. Thanks for putting up this post about substance P. I will definitely look into it more now. xxoo

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