Is accepting fibromyalgia a form of s... - Fibromyalgia Acti...

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Is accepting fibromyalgia a form of surrender ?

mybehcetsxx
mybehcetsxx

My answer to this question is interchangeable.

At 19, I am 40 now, I was diagnosed with Behçet’s disease. I fell very poorly and my sight started to deteriote rapidly. It was stabilised with some aggressive medication which resulted in weight gain, a mood face, stretch marks and other unpleasant side effects - and at only 19 was totally devastating.

I decided not to accept Behçet’s anymore. I totally rejected it even with the threat of loosing my sight, should I stop medication. I had already lost 8% in one eye over the period of a few months. Yet that theat wasn't enough. I stopped all medication, a slow weaning process, against the advise of 3 different specialist.

I never felt better. The uveitis left me and my sight remained the same.

Over the past 20 years I have had a couple of relapses but never on the scale like before.

I belive a strong positive mental attitude was what saved me then.

I try to apply to same principle with fibromyalgia, because when I'm pain free, which I have been, I feel enthusiastic and think dont give in. Dont give myself that label, and when I'm crippled with pain and or depression again, I give in and wear my label-like the well - behaved slave to it.

So should we surrender and accept or totally reject?

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60 Replies
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Hazel_Angelstar
Hazel_AngelstarAdministrator

For me, acceptance was the key to me taking control and learning ways to manage my symptoms. Trying to ignore it simply led to constant crash and burn flares

I understand also can see where your coming from. I would rather it not there at all though.

I agree, but likewise "know your enemy". Accept its existence and you have started half the battle. Dont let it beat you is a good follow up, but I find there are days when a tactical withdrawal is the order of the day.

I agree, Hazel_Angelstar we have to accept fybro for what it is , a long term chronic illness there is no cure, so we have to live with it , there’s no point in fighting it , live each day as best we can and learn to manage it, when I first had it I questioned everything I didn’t believe it was fybro, but after every test came back ok there was nothing else to do but say this is what I have and I have to live with it, just like many people with other long term illnesses, MS etc , I feel much calmer since then and in control, take care

Ditto.. I stopped fighting against it and started fighting with it, I have improved greatly. Still not pain free.. but it doesn't stop me doing anything.. it makes me more determined to find ways of doing something ,(apparently I am very stubborn *I say independent)... even though I know it will come with consequences x

desquinn
desquinnAdministrator

I think it is dangerous to take the approach of thinking your way out of a condition. If it was cancer or other progressive condition, or mental health it would not end well. For some it may be what works for them like you suggest but for others it could deny them the option of carrying out certain procedures or activities that could help them maintain or improve their quality of life or deny them medications that could improve things.

If I had taken this approach I would be a lot worse than I am at present.

mybehcetsxx
mybehcetsxx in reply to desquinn

But it wasn't cancer and its only dangerous if you are completly mindless. I exercised the power of my mind and it worked, at that time.

Only myself and one other man on the UK has stopped all medication in the hight of a flare up with successful outcome. Specialist 20 years on are still amazed.

Photographs of my eyes and the severity of Inflammation in both eyes, front and back, are still used today at University of Birmingham in my professor lectures

The power of mind is unbelievable if you dont belive. Mind over matter is not a cliché but literal. Okay I haven't managed to use it with fibro yet but im not ready to quit, no way Andbut doesn't mean everyone can think their way better but it works because I'm living proof

desquinn
desquinnAdministrator in reply to mybehcetsxx

I am only speaking about fibro as have no experience of your condition.

Nessie87
Nessie87 in reply to mybehcetsxx

I agree with you. Positive intervention and self help is much better than endless medication which just suppressed symptoms rather than curing.

Case in point proven concerning Diabetes type 2. Adopting a low carb diet and eating whole foods instead of all carbs like bread for example can lead to positive outcomes.

Carlt
Carlt in reply to Nessie87

A low carb diet has nothing to do with hippy dippy nonsense about "PMA" it is a proven treatment that has been adopted by the NHS (though some trusts are a bit slow on the uptake.

mybehcetsxx
mybehcetsxx in reply to Carlt

Your a really rude man!

Have a bit of tact and loose the bitterness its ugly

Carlt
Carlt in reply to mybehcetsxx

And your advice is dangerous, uninformed and just as dismissive to me as I am to you.

Advising people to ignore medical advice and treatment is worse than rude...it is dangerous and should be challenged.

Dizzytwo
DizzytwoModerator in reply to Carlt

Hi there, if you feel any post or reply maybe of a dangerous nature or incorrect please report it to the admin team so they can look into it and take the appropriate action thank you.

Momo

Dizzytwo
DizzytwoModerator in reply to mybehcetsxx

Please remember everyone is entitled to their opinion. We are not always going to hear what we wish to when we post. If you feel any post or reply is against forum rules please report it in the proper manner and let the admin look into it. thank you.

Momo

Carlt
Carlt in reply to Dizzytwo

She is not offering an opinion. She has taken her one experience and declared it "proof". I don't challenge all unproven therapies and have even tried some myself but when someone declares something "proven" with no clinical evidence then it becomes dangerous.

mybehcetsxx
mybehcetsxx in reply to Carlt

Also Mr think you know it all, obviously! The low carb and intermitten fasting wasn't adopted or even advocated by the NHS for some years. Doctors and nutrients away from the trust have been writing about curing type two independently with NHS recommendations. Listen yoy want to out your trust solely into the medical world thats your provocative, the rest are entitled to think outside the box 📦 . Not everyone's as small minded as you we need space so back off!

* nutritionist

Without the NHS *

Carlt
Carlt in reply to mybehcetsxx

I don't put my trust solely in the medical world but I certainly don't put it in some random stranger who treats one instance as proof that some unproven nonsense works...especially when it is completely unrelated to the condition in question.

Come back and tell us when your fibro is cured and you have participated in clinical trials and I might take you seriously.

mybehcetsxx
mybehcetsxx in reply to Carlt

You clearly feel rattled by my post, yet it was a question for the forum, not obligatory for anyone to respond nor did I mean any offence to anyone on here. Yet you take offense. The problem is with yourself and not my post. It was never advise for you, or anyone else, but a qs with a shared experience. I dont need to do clinical trials etc or justify anything to you. If yoy don't like my post don't reply. It is that simple, you should understand that.

Also stress is bad pre-op -im sorry j hace ko medical evidence at hand for that, nor I hace taken part in any trials for that. Pretty much COMMON SENSE

Gooodluck with your op tomorrow, wait luck may be 'hippy dippy nonsense'

I pray 🙏 your op is a success

Carlt
Carlt in reply to mybehcetsxx

I am rattled by anyone who gives dangerous, unqualified advice.

mybehcetsxx
mybehcetsxx in reply to Carlt

It was not advise like I've said

mybehcetsxx
mybehcetsxx in reply to Carlt

I'm qualified more than anyone to talk about my experience you or no one else will tell me otherwise

Carlt
Carlt in reply to mybehcetsxx

You are not qualified to relate your experience to fibro.

I do hope your claims don't lead to folk going blind.

mybehcetsxx
mybehcetsxx in reply to Carlt

I related my experience to a medical condition I have

I would say “each to their own”. It worked for you, but for another it might be devastating and downright dangerous.

I found that it was only when I accepted Fibro diagnoses, and found methods to manage, and meds to make me get the most of out of my life, did I get any quality of life back again.

GP. 😊😊

Personally for me it’s about balance I accept on my bad days that I cannot physically do what I may have wanted to and surrender for those days but on my good days I do everything that I want to and with such enthusiasm it drives everyone crazy.

I have been in some very very dark times in my life but I have a very positive outlook on life now because let’s face it this is the hand I have been dealt and it’s up to me how I now balance my life.

I am of the opinion that on the days I am in incredible pain that there is another human being that is in a far worst place than myself. I never put a label on myself, illness or anything in life come to that, but that’s just me 😊

The day I give up is the day I am put in my wooden box. I prefer to think I am fighting small battles not a full on war.

KR panda 🐼🤗

desquinn
desquinnAdministrator in reply to Panda1968

Some people find that if they pace they can do even more rather than boom or bust. Not sure if that's appropriate for your situation.

Panda1968
Panda1968 in reply to desquinn

Couldn’t agree more I am learning to pace also do a bit rest a bit as I put it 🥰🐼

Ajay575
Ajay575 in reply to Panda1968

I untill Friday

🚶‍♀️🚶‍♀️🚶‍♀️🚶‍♀️🚶‍♀️💃💃

Panda1968
Panda1968 in reply to Ajay575

Loving the dress Ajay 😄🐼

I love your answer. Very simple approach to such a complex condition which sounds like it works for you.

The labels, I feel are a justification for me not being me today, so people understand what's going on. I still get asked my friends and family, when I'm flaring up, " what have you done?, in a puzzled tone like

"you was okay yesterday" to which I reply... "I have fibro remember" and you have dorys memory clearly...?

I'm very hard on myself and either totally reject or totally surrender going into the dark days as you say. I'm struggling lately to find the balance. Because fibro is completly dictating to my life now and im clearly annoyed at my loss of control with it. Hence why I want to totally reject it like I did the Behçet’s but without the success, for now

🙂

Ah I totally get where you are coming from, each of us have different ways of dealing with things. I always liken Fibromyalgia to an onion one condition but with many layers. I try to tackle them one at a time but when you have half a dozen symptoms in one go with more being added it’s difficult, we have no control over it - it’s hard.

I really hope you can find your balance.

😊

Mydexter
Mydexter in reply to mybehcetsxx

I have come to the conclusion over the many years I’ve had fybro that it doesn’t really matter what other people think, who cares, I know how I feel, live your own life you don’t have to justify yourself to anyone.

Those that matter don’t mind

Those that mind don’t matter

Dizzytwo
DizzytwoModerator

I personally have never understood why people think exceptance is seen as giving up. For me exceptance as always been about moving forward.

I'm with Panda1968 I tend to take each day as it come and play with the hand I've been dealt. It works for me 😁

I had a serious car crash 20 years ago and numerous injuries which required strong medications. After years of excruciating pain and subsequent meds side effects I warned myself off them with the help of acupuncture treatments and only then could I get my life back eventually returning to work full time. When I was diagnosed with fibromyalgia 3 years ago it was like someone was slowly applying the brakes on my life until I had to stop doing anything meaningful. Once again the side effects of the meds was appalling so in January this year I weaned myself off them. My “good days” are now much improved allowing me to enjoy life again and my “bad days” are no worse. I think my mental health is improving as I now have things to look forward to! It’s a simple life but I’m learning to live it 😁

I love the fact Beachcomber that you said it’s a simple life and you are learning to live with it. I never thought of it that way before, it explains it perfectly. I am also glad that you are managing to come through what can only be described as an horrendous time.

Panda 😊

Accepting fibromyalgia is understanding your limitations. Looking back to when I was in my forties!! At that age I acted like superwoman, juggling home life, work life with no work life balance. Something had to give eventually and it did. 🍁

Good luck on friday 🤞

Panda1968
Panda1968 in reply to Ajay575

Oh thank you Ajay will let you know how I get on 🙏🏻🤞

Positive attitude does

help a lot yes

The acceptance is a good point lots do not accept and if you do accept you can move on for the good

On the other hand i understand the other point as well and get the 2 points

Im on the fence with both and both does come into your mind

mybehcetsxx
mybehcetsxx in reply to Ajay575

I agree. Sometimes I think that's my problem I haven't accepted it and maybe it holds me back...

Maybe it's a mental block. Im fixated on getting my life without the limitations forced on me. It drives me mad

Ajay575
Ajay575 in reply to mybehcetsxx

Im sure lots are similar as well

Lots benefit with acceptance

And for lots it is a battle as well

Even thinking the opposite that thats it you will not get better and will not be fighting it anymore

Sometime if you can get a 1to 1 with a senior occupational therapist can help

May be worth trying if not tryed already for referall once this coronaviris settles

True. Ive never thought about an occupational therapist. I go to a pain management clinic but in all honesty they taught me nothing new.

I will ask for the OT referal though, by time an appointment tent comes through covid should be over lol 😆

Ajay575
Ajay575 in reply to mybehcetsxx

I ha ha thats true ,worth ago though

They deal with the clinics etc as well ,But 1 to 1 is good they go into detail and form a relationship etc

Another option is a psychologist 1 to 1 you think oh no ,not a psychologist

But not like that that could really help as well they are just as good really good

The psychologist could be worth a try if doc referred it is hard this cause it is always on your mind

Hi, just to say I don't have fibromyalgia, rather the hypermobile type of Ehlers-Danlos Syndrome (hEDS), the pain which some of us have is however most likened to fibro.

I think in some ways having hEDS may have been easier, as it's a genetic disorder, so I sort of grew up with it.....altho I didn't know what 'it' was; why I was in pain, nor that it was genetic disorder for a long time. I began to have my suspicions when my children began to have problems.

I researched, & found out what disorder I had, then had to wait 2 & a half years to meet a consultant who specialised in my disorder. To me it was a relief to get my diagnosis confirmed (get the label) in my 40s.

I think it's normal to go through the stages of denial, grief & acceptance with a new disorder. As I say, for me it was different, as I'd always had hEDS. However, I did have to learn acceptance of my disorder as it began to have a greater impact on my life.

Does my disorder define me? Certainly not. To me there's a world of difference in 'surrendering' to a disorder, & acceptance that that is what you have. As has been mentioned above, 'accepting' is working out what you can do (rather than thinking about what you cannot). I used to always want to get everything done, then collapse in a heap at the end of the day; pacing also works for me, tho it took me a while to take this onboard, even tho I knew it would help.

Well I've got my heart op tomorrow but maybe I should just ignore the cardiologist with years of training, the surgeons and scientists who have spent years developing safer, less intrusive methods and new ways to save lives and listen to the complete stranger who refused treatment and got better from a completely unrelated condition and tell them I'm going to get better using purely the power of my mind?

No ta! I'll trust the experts thank you.

Same goes for my fibro.

mybehcetsxx
mybehcetsxx in reply to Carlt

😂😂😂 might have know you would have replied with a complete idiotic statement and totally out of context.

I was rushed into hospital 3 weeks ago for an op, I didnt 'think' my way out of it!

Carlt
Carlt in reply to mybehcetsxx

There is nothing idiotic about my response and it is entirely within context.

You used your experience with a completely unrelated condition to offer "advice" to folk you know nothing about.

Your eye condition bears as much relationship to Fibro as my heart condition.

mybehcetsxx
mybehcetsxx in reply to Carlt

Let's get this straight shall we. I posed a qs, not advise. At no point did I ever advise anyone to do what I did.

mybehcetsxx
mybehcetsxx in reply to Carlt

Thats an op totally different.

And fact my approach worked cant argue with that.

Carlt
Carlt in reply to mybehcetsxx

One recovery does not constitute a clinical trial.

mybehcetsxx
mybehcetsxx in reply to Carlt

Your so negative and i thought I was. And I know of one other man who done the same

Carlt
Carlt in reply to mybehcetsxx

Name him and produce the evidence.

There is a name for alternative medicine that works...It's called "medicine"

mybehcetsxx
mybehcetsxx in reply to Carlt

Who do yo think you are.

Carlt
Carlt in reply to mybehcetsxx

I am not someone making unsubstantiated claims with no training or expertise.

I am simply asking for clinical evidence to back up your claims'

Extraordinary claims require extraordinary evidence.

mybehcetsxx
mybehcetsxx in reply to Carlt

It is not advise a shared experience and a question.

Hi, you’re post caught my eye, I don’t always pick up the fibromyalgia ones but I was diagnosed at 18 with FMS and then Behcets in my late 30s. I think it’s a balance- there is a known mind-body connection, so I was pointed towards mindfulness to begin. Then acceptance and compassion. It didn’t really ring with me but the books listed on the Behcets U.K. website are really very good. It’s difficult because as it’s rare, they seem to have quite set ideas about treatment and at the moment I’ve been getting by on colchicine and hoping eye involvement doesnt come into it, as it seems that tips the balance towards heavier immune suppressants. You have to listen to your body. It’s very interesting what you’ve said & it’s all about keeping the inflammation down. We know that stress impacts so it’s logical having a positive mindset & outlook will be beneficial. Best wishes

I am sorry if I come across as rude but "PMA" nonsense is dangerous and ill advised.

It reminds me of the guy in the 80s who had pancreatic cancer, refused treatment and got better purely by having coffee enemas. This then became a fad treatment that claimed many savable lives and is still recommended by some charlatans.

"PMA" is fine...have a positive mental attitude that healthcare professionals are the best people to treat our condition and any "alternative" therapies will receive the correct assessment and trials and either be dismissed as nonsense or adopted as a conventional treatment...just like low carb, acupuncture and others have been.

Dizzytwo
DizzytwoModerator

I have asked both you and Carlt to report any difference in the proper manner to the admin team. This post will be turned off due to its aggressive and argumentative nature which goes against the rules of this forum.

Momo

The ability to reply to this post has been turned off.

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