BIGGEST LIE EVER

I was told this will not cause any damage or injuries to me or my muscles lol😂💪👀

[honeybug]

Hi Relaxand breathe😊🌿🌸🦋

It took a long time for Muscular Dystrophy and it’s variations to be accepted as a disease. When it was finally proven as an entity WOW were the naysayers proven that was a faux pas and THEY had egg on their faces big time, as we say across the pond.

My paternal Uncle and Aunt were the longest survivors of one subcategory called Freidrichs Ataxia...they are in the medical books as case studies.

Sooo ONE day Fibromyalgia will take its rightful place with its subcategories too.

I’ll be long gone by then but I pray for all the younger afflicted Fibro Warriors that they will NOT have to suffer through the indignities of being dismissed and pigeonholed/or fallen through the holes as so many of us have done (myself-41+ years).

We must stick together support one another as much as possible until that day comes.

Hang in there Rab/Relaxandbreathe.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

[Hidden in reply to honeybug]

Thank you. .. I'm 50. My daughters 25.... I'm hoping theres no genetic link... honeybug 😷

[honeybug in reply to Hidden]

You’re welcome dear.

😊🌿😊🦋

I’m 68+.

I may be wrong but I don’t think there is a link genetically.

I was the only one with FM in my family. I learned from a very very very experienced member @barnclown (who is having a very long and difficult recovery from surgery at the moment) that trauma is what triggered hers and I agree for mine as well.

We both suffered closed head injuries as young children plus emotional trauma (PTSD) that has triggered our FM.

My brother was diagnosed just recently but only after years of self inflicted trauma and PTSD.

I suspect my dad has it too but only after 8years of trauma and PTSD.

it is only normal to be concerned/worried about a genetic link to FM. Because of our first hand experiences we wouldn’t wish this on our loved ones.

Worry is a stressor that does make FM worse.

If indeed there is a future discovery of a genetic link there isn’t anything we can do to protect our children from it. Try not to concentrate on that guilt you are already carrying about possibly passing it on.

What you can do instead is to observe your daughter and keep notes on her symptoms/experiences dates times activities diet illnesses reactions etc. to help her for the future. Keep track of your own FM journey in your own chart to both help with her (what did or didn’t help you to aid her if she has similar symptoms) plus help yourself in your doctor visits.

This detailed home chart was invaluable to my/my husband’s care for decades now. Our doctors find these details helpful in their diagnoses and treatments of our multiple health issues.

I don’t post a lot these days due to my hEDS causing bone on bone osteoarthritis. It limits my ability to type.

But I had to reply to you and try to help you however I could in not finding fault with yourself over a possible link genetically to FM.

I’m willing to chat if you’re willing to wait for replies. I owe sooo many members/dear friends replies at the moment.

You take care sweetie and abundant blessings dear.

Much love and hugs sent your way.

EvaJo 😊🌿🌸🦋🙏🤗💗😘😇🕊

P.S. I was just informed by Hazel_Angelstar that IF someone in your family had FM that you are predisposed for a higher risk of developing it. I stand corrected. xxx

[Hidden in reply to honeybug]

Thank you so much and I will xxx don't mind waiting .I'm same screen texting all trigger everything ...

[honeybug in reply to Hidden]

Sorry sweetie that suffer the same. Hugs and kisses your way dear.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

[Hazel_Angelstar Administrator FMA UK Staff in reply to honeybug]

There can be a genetic predisposition.... What this means is that IF someone in your family has fibromyalgia you might be at a higher risk. There are many people with fibro who are the only person in their family with it.

[honeybug in reply to Hazel_Angelstar]

Thank you for teaching me this. I will correct my reply accordingly.

Abundant blessings.

EJ 🤗💗

[Hazel_Angelstar Administrator FMA UK Staff in reply to honeybug]

Is one of those things that might affect some people with fibro but not all ... And even if you have family members, it does not necessarily mean you will get it..... Is it any wonder we get confused 🤔🤔🤔

[Hidden in reply to Hazel_Angelstar]

Thanks

[desquinn Partner Volunteer FMAUK Trustee]

That's what the evidence says

[Hidden in reply to desquinn]

Lol

[Hidden in reply to Hidden]

I'm covered in injuries ..I'd send you proof but maybe not best idea ...that's like saying .. don't warm up before exerciseing to an athlete

[desquinn Partner Volunteer FMAUK Trustee in reply to Hidden]

your injuries may not be fibro related or may be due to stumbles I do not know. Biopsies have been done and other research has been done. Deconditioning due to lack of activity can then result in strains or injuries for example but this is not down to fibro. Similarly a fall from stumbling due to fibrofo issues is not down to fibro directly.

[Hidden in reply to desquinn]

Thanks

[Hidden in reply to Hidden]

I here myself and I wasn't like this before...allowing pain 10 out of 10 +everyday and night without any relief does leave you frazzled and weak .. I didn't choose this ..i was super active before ..

[budgiefriend]

Yes, I was diagnosed in 2002 and told I would be able to essentially live animal life, by making some minor adjustments. Did anybody know back then? I am mostly bedbound since about 2014, and have several other diagnoses. Even after an official diagnosis of Fibro, and confirmed in 2007 by Rheumatologist again, every symptom I came in with I was told it was an emotional problem until about 2015-2016 demanded to have tilt table test, then diagnosed with POTS, EDS Hypermobility. Then finally paid private Dr. With M.E. experience and got Severe ME diagnosis. Much of my current level of disability could have been prevented if I didn't follow all doctors' advice to push through pain, deny symptoms and not focus on them, exercise more and more and more.

It would have been so much better if I had been listened to, supported,believed, and had doctors with awareness who tried to learn instead of making assumptions. I still get treated this way whenever I am forced to go to them for any problem. I avoid whenever possible.

[Hidden in reply to budgiefriend]

I totally agree ... same ..

[desquinn Partner Volunteer FMAUK Trustee in reply to budgiefriend]

Advice for ME and fibro is different. Activity is ok for fibro but not recommended for ME.

[budgiefriend in reply to desquinn]

I understand that in theory, but once I had a Fibromyalgia diagnosis, every GP I went to decided that there is no such thing, or it's an emotional problem, etc. There is far to much overlap of these conditions. The advice to do more, ignore symptoms or whatever is wrong put that down to Fibro and lack of exercise, is devastating for many people. I had only one GP (a registrar with no power to do much over senior doctor's advice, it seemed and left after a year) of many, many GPs I saw over the years who would consider ME as even a subject to be mentioned. I was blacking out and falling over in the street and still told it was an emotional problem. As long as researchers are even now unclear about the overlap between these conditions and others with common symptoms, GPs don't have current definitive informarption. If exercise puts you in worse shape, that ought to be clear. If you are in the beginning stage of ME, you have a chance of recovery, depending on your particular case, and exercise is the worst thing you can do for any chance of recovery. Only a specialist in ME can advise you how to do some very gentle movements and how much, after you have been diagnosed and achieved a baseline of stability. I know many others have the same story. It took 5 different GPs turning me down over 3 years after I researched and knew I needed assessment to determine the cause of my orthostatic intolerance. I did preliminary recording of fluctuations in heart rate from changing positions, used correct terminology, and they would not even follow protocol on NHS website to address it.

This routine telling Fibro diagnosed patients to exercise more seems not great advice if you have not had other conditions ruled out and when exercise/exertion creates Post Exertional Malaise/ worsening of symptoms. We need to not ignore our bodies, in my opinion.

[desquinn Partner Volunteer FMAUK Trustee in reply to budgiefriend]

contrary if you have fibro and do not keep up activity levels and muscles decondition then you will lose quality of life and be worse off.

[budgiefriend in reply to budgiefriend]

I should add that so many of us have eventually received both Fibro and ME diagnoses over a period of years, and lots of us also have DX of other commonly comorbid conditions. Currently, doctors are not equipped to listen and investigate and read latest guidance on such complex complicating factors.

[desquinn Partner Volunteer FMAUK Trustee in reply to budgiefriend]

instead of comorbid it may be a differential instead. Similar presentation makes it very difficult for doctors and this is why more research is required.

[budgiefriend in reply to desquinn]

All the more reason to be sure you don't do harm. See ME Association and all other charities supporting and informing on latest advice for ME and possible ME regarding exertion. I was not even referred for ME assessment, GP even thinks Fibro is mainly emotional. Many patients likewise not assessed for ME and told to exercise. ME assoc. warns of dangers, as so other sites such as Health Rising which has experts research and clinical guidance on both Fibro and ME/CFS. If exertion is severely limited in early stages, some patients recover after several months rest. This period is critical.

[Hidden in reply to budgiefriend]

Budgiefriend ... I need to save this x

[Hidden]

I'm living an animal life too lol xxxx..I know what you meant .best laugh today thanks

[budgiefriend in reply to Hidden]

My predictive text on my tablet knows that reference to a normal life from this user is unlikely. Hahaha. We ARE all animals, and I desperately wish to be a red squirrel with tufty ears jumping from branch to branch. My magic genie lamp is offline, and does not receive these requests.

[Hidden in reply to budgiefriend]

Lol x..one if those flying squirrels..I might join you .i was thinking coming back as a pampered dog laying around getting my ears massaged .. and if I get sick get taken to the bionic vet and be better 3 days later..

[budgiefriend]

I'm so sorry for you and everyone else experiencing this very difficult and often lonely, maddening way to live. It is good to support each other.

[Hidden in reply to budgiefriend]

Absolutely 💛

[FoggyMoggy]

A member of my family has MS which has similar symptoms, so may be a genetic predisposition. Another family member has many of the symptoms but not the fatigue

[glochessum]

My mums mum was diagnosed with fibrositist , my mother has been told she has fibromyalgia, I have it and my daughter has it. So I would say it does run in families. Hopefully my grand daughter will be lucky and it will give her a miss.

[bookish]

Seems to run alongside B12 deficiency/Pernicious Anaemia and thyroid issues in my family. Looks like it might be MTHFR gene in my case and poor methylation (plus other triggers, stress, trauma, food intolerances etc).