Do you all who have fibro start with ... - Fibromyalgia Acti...

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Do you all who have fibro start with an injury or a pain?

JazzElvis1 profile image
46 Replies

As I’m reading the most interesting book on pain , I think everyone with fibro should read

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JazzElvis1 profile image
JazzElvis1
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46 Replies
AllthatGlitters profile image
AllthatGlitters

mine started with trauma. X

JazzElvis1 profile image
JazzElvis1 in reply toAllthatGlitters

yes, did you know that a trauma heals in a number of weeks? And that if there’s persistent pain , the central nervous system has gone haywire and sending faulty messages, and that all pain comes from the brain not the tissues or body part ?

Cat00 profile image
Cat00 in reply toJazzElvis1

I would have thought that depends on how long the trauma goes on for and how severe it is surely?

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply toCat00

you are right but generally and in most injuries or conditions if your are 3 months post incident then it very likely the "incident" is no longer the factor or main factor. This is mostly talking about physical trauma and for every rule there are exceptions like sickle cell or any number of conditions.

But 3 months post broken leg and no other scans showing anything going on then it aint the broken leg anymore.

JazzElvis1 profile image
JazzElvis1 in reply todesquinn

true

Cat00 profile image
Cat00 in reply todesquinn

My trauma went on for years...

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply toJazzElvis1

If you are reading about this then the excellent Prof Lorimer Mosely is worth a watch. Daniel Clauw videos are also worth watching especially his 90 min+ UoH ones.

youtube.com/watch?v=Sjes9Cu...

JazzElvis1 profile image
JazzElvis1 in reply todesquinn

great thanks

fmlife profile image
fmlife

no the fibro, did not start with injury or trauma.

JazzElvis1 profile image
JazzElvis1 in reply tofmlife

whet did it start with?

fmlife profile image
fmlife in reply toJazzElvis1

now that is a very good question, started as a pain in centre of chest, no injury or trauma, or any reason to be in any pain. it started and got worse as spread. no one else has it, its the weirdest start to it wish it would go as it started.

JazzElvis1 profile image
JazzElvis1 in reply tofmlife

Ive had pain in my ribs, and regularly get them manipulated at the chiropractor for relief , has made a real difference

Blearyeyed profile image
Blearyeyed

Which book are you reading?

JazzElvis1 profile image
JazzElvis1 in reply toBlearyeyed

explain pain

Blearyeyed profile image
Blearyeyed in reply toJazzElvis1

Is that the title ?Who wrote it?

Fibro pain can be triggered by many things not just illness , infection or injury .

Repeated trauma , either Mental or Physical , or Excessive Stress ( this isn't just bad things but any physical or mental activity that it too much for your body or brain to cope with )

Severe illness , severe infections , repetitive injuries and having other chronic health problems that cause repeated symptoms , or pain can also be the cause.

Sometimes , it is genetics , you may have Fibro if you and your family have a history of autoinflammatory and autoimmune conditions.

Fibro doesn't necessarily begin with Pain but Pain is one of the main symptoms of Fibromyalgia.

JazzElvis1 profile image
JazzElvis1 in reply toBlearyeyed

it’s explain pain by David Butler, it’s not cheap unfortunately, because I think everyone with pain should read it , yes not always an injury but it’s normally something that sparks the pain off x

Loobielu profile image
Loobielu

Not 100% sure what triggered mine. Definitely not an injury but I've had plenty of stress. I think my mum had it too but never diagnosed of course 😏

JazzElvis1 profile image
JazzElvis1 in reply toLoobielu

did a pain just start somewhere?

Loobielu profile image
Loobielu in reply toJazzElvis1

Gosh I can't remember. I don't think I've felt well since the traumatic birth of my first daughter (now 21). After my first husband cheated on me and left me with a 3 year old and a 4 month old life has been a bit of a blur of struggle after struggle. Late 30's I started to really notice the joint pains so I started popping all the joint vitamins I could lay my hands on - didn't make any difference. Things have just got worse over the past 5-10 years but I just put my head in the sand, didn't want to face it and I didn't have the energy, until I preferred dying over living, this is when I started to get a diagnosis.

JazzElvis1 profile image
JazzElvis1 in reply toLoobielu

gosh , I hope you are feeling better now x

LhasaMomma profile image
LhasaMomma

No. It wasn't any trauma. It looks likely that mine was triggered by meningitis vaccine.

JazzElvis1 profile image
JazzElvis1 in reply toLhasaMomma

wow really? That’s interesting

Knightqueen84 profile image
Knightqueen84

Mine was trauma and looking back I'm pretty sure my mum had fibro too but undiagnosed. Can I ask what book it is you're reading?

JazzElvis1 profile image
JazzElvis1 in reply toKnightqueen84

explain pain

Spider395 profile image
Spider395

The rheumatologist thinks mine was started by a virus.

JazzElvis1 profile image
JazzElvis1 in reply toSpider395

I read that the herpes virus can start it , I’ve had that too , so could be true

mjrminor profile image
mjrminor

The doctors are convinced mine was triggered by living with rheumatoid arthritis. I'd also like to know which book you're reading.

JazzElvis1 profile image
JazzElvis1 in reply tomjrminor

makes sense , as chronic pain causes the over stimulated central nervous system to send faulty messages ,

Alltheflowers profile image
Alltheflowers

Definitely started with stress for me. Stress can have such a negative impact on your life.

JazzElvis1 profile image
JazzElvis1 in reply toAlltheflowers

very true

Gooddaysagain profile image
Gooddaysagain

My impression is that my experience of 'pain' is my body telling me to stop hurting myself; physically and emotionally. Over a lifetime, we develop strategies that allow us to complete what we think we need to do. Each time we cross a 'pain gate', and carry on, the next level of pain can be reached more easily. Carrying on through any trauma, whether it's physical, emotional or mental, saves up our pain until a time when the body finally takes over from the will; and says 'No More'.

There are times, though, when our bodies treat all pain as this type of threat, and find ways of telling us to stop the emotional hurt as loudly as it warns against physical injury. Until I was in my early 30s, my hands would hurt very badly whenever I got really sad or frightened. Oddly, I never mentioned this to anyone - I suppose I assumed everyone felt the same because I had never know it not to happen. During a flashback at a job interview (?!), I remembered I had been tortured at the age of 8, for several months, by a teacher who made me stand in front of the rest of the class with my arms in the air. I had to keep them up, or I'd be punished even more. I was told by my mother, when I asked her if this memory was true, that the teacher had been tortured in a German POW camp and had found out that my Mother was German. The pain I experienced for years in my hands, was the same as I get when the blood flows back into your hands after a blood pressure test. I assume, this would be how I felt when I was eventually allowed to let down my arms. (BTW: I was always well-behaved, but I was more scared of my Mum and thought she'd think I'd been naughty in class so didn't tell for ages.) I don't know when, exactly, the pain in my hands stopped in my 30s, but I think it was when I let myself understand why that teacher had done what he did, and felt empathy with him.

When I developed Fibromyalgia about 12 years ago, it reminded me of the pain I'd had in my hands for so many years that I could only attribute to sadness and fear. It seemed to have a very different quality to the other types of pain I'd felt.

I don't know if you do too, but I seem to experience several different types of pain and, through going into them with meditation, I named them 'outside in' pain (e.g. caused by an external trauma felt in my body, this is usually fairly new and acute), an 'inside out' pain (such as a trapped nerve or old/chronic injury turned arthritic) and 'the other one', which I used to call my 'burka' pain, because it closed down my whole world into a heavy, all-embracing black cloak of pain with a dim square through which I had a fuzzy, blurred view of my immediate surroundings.

When I first started to get bouts of the 'Burka' pain, I persuaded myself that it was the same sort of thing as the pain in my hands had been; i.e. "all in my mind", and was there for "no reason"; It - the pain - was, therefore, "my fault" and "shameful" (isn't it sad, the language we use, against ourselves when we're in pain, or in the presence of someone who doesn't believe us?)

I remember seeing on orthopaedic Consultant who stood in front of my X-ray and said: "There is nothing on here to indicate the level of pain you say you are feeling".

I was aware that the medication I was given for the 'inside-out' and 'outside-in' pain 'worked', but that nothing touched the black cloak of pain and blurred vision, and I needed it to stop.

I know that all pain is 'felt' in the head (just because that's how the nervous system works), but not necessarily in the mind. But, if I could 'feel' the remembered pain from when I was tortured, and 'treat' it with understanding and empathy, then surely THAT was all in my mind? What do you think?

I don't know, I have no answer. I know that it's worse if I get tired or stressed (and, remember, excitement is also a stress, even if a positive one - so, I've found this delightful Christmas truly exhausting and painful).

I try to avoid causing myself 'outside-in' pain, and recognise that 'inside-out' pain is likely to be worse when the weather's cold and/or wet, but this Fibromyalgia's not simple at all!

Have a look at nociception and ask your GP/Consultant about it next time you see one. I think there's a lot we could tell the Medical profession about the nature of pain.

Sorry to have such a long rant at New Year. I hope yours is a more comfortable one and wish you a gentle 2023.

Namaste,

Dee

JazzElvis1 profile image
JazzElvis1

sorry to hear of your trauma, must of been so frightening for you , and explains alot, as yes pain is in the brain, but it’s the threat and fear that keeps it locked into certain body parts , I’m going to prey for you , my dear one x🙏

JazzElvis1 profile image
JazzElvis1 in reply toJazzElvis1

pray

Matrix profile image
Matrix

Hi ,mine started when I was 10 years old and caused by a cruel stepmother and being frightened everyday of my life .I have had it all my life apart from 9 years from birth .Also as years have gone by I have lots of other things go wrong .Xx

JazzElvis1 profile image
JazzElvis1 in reply toMatrix

I’m sorry to hear that,

Matrix profile image
Matrix in reply toJazzElvis1

ah thank you but I’m totally ok nothing now is as bad as being a kid . I have seriously chronic pain but I manage it with my hobby and out ok , I’m not saying it’s easy but I cope the worst pains I have are restless legs and the worst pain in the world trigeminal neuralgia .Hope some of what I have said helps , I think you have to grieve what you can’t do and then get a hobby it’s saved me really from being depressed . Xx

JazzElvis1 profile image
JazzElvis1 in reply toMatrix

great attitude

Nelly1 profile image
Nelly1

mine started with pain.

It was a Sunday evening, I was sat in my chair and all of a sudden I got the most excruciating pain in my right hip and down my right leg. I thought I’d had a stroke.

My work at that point was very very stressful, I be,ieve that’s what started mine off, the stress from work.

I was off work for a Year, went back on a phased return to work, couldn’t cope and I was ill health retired, not with immediate pension.

About 6 months later I was diagnosed with Fibromyalgia, then six months after that I was diagnosed with ankylosing Spondylitis.

Stress now also plays a big part in my illnesses so I try to avoid it as much as I possibly can.

I now work part time (3 days a week) and cope quite well with that.

I work at the university of Reading and they are very understanding to my needs so if I need to swap a day or I’m not feeling good they allow me to work from home.

Good and understanding employers like that are very hard to find.

JazzElvis1 profile image
JazzElvis1 in reply toNelly1

have yiu seen a chiropractor, it sounds like the right side of your pelvis was pressing g on a nerve?

JazzElvis1 profile image
JazzElvis1

I would get a foam roller the longer one, lay on it evetnight. Work up to 15 mins , start at a few mins, then roll from issue to side , massage ribs at the bac’ with the roller too, try to see what rib cage exercises you can do from you tube, then self adjustments , that’s if your ribs are locked that is , but of course check it out with the doctor, just incase heart or something, let me know in a few months how you are?

SlothMode profile image
SlothMode

Hiya Jazz,

My fibro was triggered due to losing 7 of my close family including my dad n big sis. I watched my dad lie in a bed n suffer for a month with terminal cancer. I was healthy before all this I was working, loved walks n was a keen photographer. After dad passed it started with terrible leg, shoulder n back pain, then when my big sis died suddenly my Dr finally diagnosed me with fibro. 😊🤗

JazzElvis1 profile image
JazzElvis1 in reply toSlothMode

so extreme emotional pain, that’s very hard, I’m sorry for your loss, I hope you can let out the emotional pain sometimes, my loss has come out in crying and screams sometimes , better than our bodies storing inside , will pray for you 🙏

LisaSnow profile image
LisaSnowFMA UK Volunteer

Most individuals have fibromyalgia have genetic susceptibility. But not all with these susceptibility markers develop fibromyalgia. Why? because fibro is a multifactorial and polygenic condition that can be triggered by different things, or perhaps something that is not yet identifiable. In general, a syndrome like fibromyalgia that is hard to diagnose accurately and has symptom severity varies greatly, the true prevalence is higher than data show. This means many more may meet the diagnostic criteria but just never get bothered enough to seek a diagnosis. I think identifying what triggers your "flare" is very important because it helps us to plan a healthy lifestyle and prevent a future flare. However the initial "reason" that starts fibromyalgia is really very difficult to know for sure. I myself pay attention to how my body responds to stressful emotion or activity, different diet or supplement, or even different environment. Gathering the information helps to plan ahead for a productive "today" and future, which is what matter.

JazzElvis1 profile image
JazzElvis1 in reply toLisaSnow

at the moment I’m having a difficult time trying to see if my flare is the new meds or the weather, can be difficult x

Julsie profile image
Julsie

Hi, I’m pretty sure my fibro started from being in a violent abusive relationship for 20 years. I started with pain whilst in it and then when It finally ended, after many, many years of trying to get myself and kids out of it, my pain skyrocketed. I think that is because after years my body and mind relaxed somewhat instead of being like a coiled spring. When my dad passed away 2 years 3 months ago I went into a flair and depression and it’s stuck at that level since.

JazzElvis1 profile image
JazzElvis1 in reply toJulsie

that’s sad to hear, sorry for your suffering, there is still hope , I hope you can get help for the depression side so that you can work on the other bits, as when there’s no motivation it stinks, I have to take an antidepressant or I can’t even get up to work on my body x

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