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?
Written by
mybehcetsxx
To view profiles and participate in discussions please or .
The ability to reply to this post has been turned off.
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 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.
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
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.
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
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.
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.
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.
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.
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.
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!
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.
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 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.
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 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.
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. 🍁
Oh thank you Ajay will let you know how I get on 🙏🏻🤞
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?
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.
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.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Do you accept your diagnosis?
Is this all fibromyalgia 
Working with fibromyalgia
When to accept a new outlook
Dr's and Fibromyalgia 
