Trust me it will get better she said ... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Trust me it will get better she said !! 😡

Rally73
Rally73

4 years ago I was diagnosed with fibromyalgia. Physio therapist said... ‘trust me it will get easier and manageable’ 🤥

What she should have said was... ‘Oh but there’s a possibility that this might happen to you’

You will lose your job, use a walking stick, sometimes a wheelchair. Lose your friends and have no social life! (Can’t really call them friends coz they didn’t stick around and Facebook doesn’t count)🤣

APOLOGIES IN ADVANCE FOR MY RANTS! Bare with me, not done yet, there’s more!!

Rapidly lose sight and change 3 pairs of specs in one year! 🤓

Inner ear imbalance, (feel like I’m in a salad spinner 24/7)

Randomly passing out (almost squishing my poor cats! ) 🙈

Develop Asthma, endometriosis and heart palpitations. Suffer with anxiety, depression and panic attacks. Along with all the other stuff that happens with fibromyalgia and I pretty sure there’s more to come! Great! Wonderful! Bring it on!💪

The worst thing is when people see you and say ‘Oh how you feeling, haven’t you healed yet?’ 🤨 like seriously people!! It’s not a wound that was stitched up!! I told you what I have, google it!

Rant over for now 😂😂

28 Replies
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Trust me it will get easier, I think this is an habitual affliction they have and done with everyone , no matter the disorder. Why, because of lack of interest on their behalf sometimes I feel and commitment to really understand the patient. They should say, yes things might improve but things may also go down the pan. xx

Mydexter
Mydexter in reply to bobbybobb

Yes it's like they are reading from a script, there's not a lot of compassion I'm afraid, you may be lucky to get individual nurses/Drs who really care, it's sad, it used to be a calling now I'm afraid it's just a job.

bobbybobb
bobbybobb in reply to Mydexter

Yes, some really do care for their patient's, there the ones who go home late and don't clock watch constantly because your taking to much time but you can certainly tell the ones that don't who put on the false grins. xx

Rally73
Rally73 in reply to bobbybobb

I love my doc, so grateful to have her! If she ever leaves then I’m going with her! 😂

bobbybobb
bobbybobb in reply to Rally73

That's fantastic, good to hear. xx

Mydexter
Mydexter in reply to Rally73

Glad to hear there are some good Drs still around, hang on to her 🙂

Julia10
Julia10 in reply to Mydexter

Since 2009 I’ve been dealing with ignorant medics & burnt out nurses, physios, OTs. Apart from my rheumatologist found no empathy.

But,,, last week I went for a hospital appt & there was a nurse who sat in. She approached me after the appt & asked if I could do with a hug. I was so overwhelmed with the random kindness I burst out crying in the corridor . It made a positive difference to me but to find that in 1 person in 10 years, something is wrong with the caring profession.

Keep plodding fibro warriors♥️

Hi Rally 73 😊🌿🌸🦋

Sorry to meet you under these circumstances

Like you I have multiple conditions (60+ 3 impending).

I’ll soon be 69 and I’ve been sick since birth so I don’t know any other way of life.

I’m so sorry that you are so afflicted. It sounds like you are still in your angry phase and that’s okay.

You are entitled to rant it’s part of the grieving process of losing life as you once had it.

You have to learn that others who don’t know about our FM just think it’s like a contagion that will eventually go away. Oh if that were only the case how fortunate we all would be.

There has to be some literature available somewhere that we should be able to pass out to those who are clueless about our condition.

We could reach them a pamphlet and teach them this is not a curable condition.

Sweetie I understand and empathize with you on all you have ranted about.

You will go through several stages of your grief and hopefully one day be able to accept FM in its entirety. Once you reach that stage you will learn how to cope and battle against it and NOT let it overpower you.

I was in my late 20s when mine started with CFS as it’s conjoined twin.

Because of my abusive childhood I learned to take care of myself at age 5.

I guess from this standpoint I’ve been constantly battling through my life with every step and accepting FM and all of it’s worst was easily accepted after a ocean of tears.

Oh I forgot to mention my severe FM wasn’t diagnosed until I was about 42. Little was known about it back then so I was sent back out into life with another diagnosis added to the heap and NO CLUE whatsoever about it or what it would do to me over time. There wasn’t any data on the internet or cell phones like now back then.

I just said a special prayer for you sweetie.

If I can help you even in some small way I’m always here for you my friend.

You take care dear Rally.

Hugs and love 🤗🙏😊💗😘🌿🌸🦋

EvaJo aka EJ

Rally73
Rally73 in reply to honeybug

Thank you so much for your kind words😘 sending prayers to you my lovely. Xx

honeybug
honeybug in reply to Rally73

Thank you sweetie much appreciated xxx

diww1
diww1 in reply to honeybug

Sorry to read you have over 60+ illnesses with 3 in the wings I've got over 30 and I thought I had the most I've ever even in one person so it's interesting to see you have double .. I am sorry to see that and imagine life is very hard.

I am housebound with my 30 plus and can barely walk and some of mine are life threatening

I hope things are managable for you

YASMINTINA
YASMINTINAFMA UK Volunteer

healthunlocked.com/fibromya..., sometimes a good rant letting off steam is good to let it off your chest, we know here really what it’s like to feel annoyed, and like someone has said getting a good doctor to have some empathy can be a tall order, I have a few close friends, the ones that have stuck around and have some understanding but still they sometimes forget I cannot keep up, but I’ve learnt to say no and put myself 1st , there is a lovely bunch of people here to chat too I hope that helps xx

Rally73
Rally73 in reply to YASMINTINA

Good job I still have my sense of humor otherwise I’ll go insane! 😂

YASMINTINA
YASMINTINAFMA UK Volunteer in reply to Rally73

Yes we would your right 🤣

Join the club! Well done, getting it all out!!! Most of us are, or have been where you are now. It is good to rant and let off steam, it releases the tension and stress. On here they are all REAL friends, because they listen and understand what you are going through. As for life in the 'real' world it is a case of managing the best you can. I have 'buddies' instead of friends. I have mentioned in the distant past that I have fibromyalgia; they hadn't heard of it, so it might as well not exist. They don't understand, because they don't really care, or want to know. As far as they are concerned (and it is the same with my own family, unfortunately - two daughters) I am a hypochondriac. Most of the time I look reasonably OK, and so, as far as they are concerned, I am OK. Simple. They only see me occasionally, in brief stretches; not 80% of the time, when I am huddled on the sofa with the hot water bottle; doubled up in pain crying in the night ; screaming at my husband because he doesn't' get it' and sits waiting for me to get his lunch/dinner etc. (He has dementia, which doesn't help). Their simplistic view is, if in pain, take a tablet and get on with things like anyone else, we all have problems! Which, obviously is true, so I have learned to say nothing about me, and simply ask about them. (On the rare occasions I do see them). It is unbelievably hurtful but I know after 30 years, things will never change. Some people are fortunate enough to have a caring network, and good luck to them, but for the rest of us it is a case of hanging in there, and trying to make the best of what we do have. My mum used to say there is always someone worse off than you! Not much consolation, I know, but what other choice is there? Sending you best wishes. We are here to chat anytime!xx

Rally73
Rally73 in reply to ShelWhitt

Hey hun, you’re mum is right and that’s what I say to myself all the time. I’m still grateful to all that I have! I pray that life treats you better. Take care my lovely xx

I feel your frustration Rally73,truly! Maybe they just say it will get easier/better/more manageable because if they were truthful and said "kiss goodbye to everyone and everything that's normal in life and resign yourself to the everlasting pain,isolation and frustration that is fibromyalgia " we would all just give up there and then! 😆 xx

I know it’s not much help physically but try to remember that those of us who share your pain on a daily basis are here for you, understand and don’t question you in any way.

We all live with the lack of understanding on a daily basis it seems to be par for the course. Sadly we are all living with a very complex and misunderstood condition.

Have your rant and get rid of all of that anger inside. It is not good for you and will make you tense - and inflame your pain.

We are all thinking of you and sending you love and a huge hug.

I hope you feel better soon. ❌

Rally73
Rally73 in reply to Tootiepie

No matter if they understand or not, we are unique, amazing and unstoppable! Because we’re worth it!! 😂😂 xx

Oh dear, Welcome to the Fibro Club, the one nobody wants to join!

We all get that one from time to time, 'Aren't you better yet?' Drives us all bonkers!

Cheers, Midori

I'm so sorry I know exactly how you feel and my local doctors surgery just don't seem to care.i asked the physio that on NHS site for fibro it showed complementary treatments that you provided like reiki. Acupuncture .reflexology.she said yes but I'm not putting you foreward for any of them..

.I hadn't asked her to...I just asked if they were available as site said... Just do rude to you.i was there about arthritis not fibro..but when she asked me to do certain things I couldn't cos my fibro is manic at the moment...all I hear is you carnt...was her reply...

I had already told her what I could do..which at moment is limited with the fibro and M.E..she didn't care

I want you to go ride your bike for 30minutes every day and get your heart pumping and your hips stronger or I will not refer you to arthritis specialist...

So I went home and talked to my cats and cried...and went to bed

Rally73
Rally73 in reply to Smoggie1

Thank you for your kind words, sorry you have to go through all that nonsense from people who don’t care or understand. Stay strong and positive. Sending lots of love your way😊 take care xx

Not all Physios are so unfeeling, but there's always one! Ask to see another one, preferably one who understands Fibro.

There is a book "Keep Calm and Take Some Magnesium" - might be useful. You could investigate various aspects of soft tissue pain - perhaps some value. Also, why not examine the articles by Dr Sircus IMVA in case he has a clue. Possibly try book on CFS by Dr Sarah Myhill.

Hi Rally73

Oh I truly understand all you've said, I was diagnosed yrs ago and was told that at least it doesn't get worse.

We'll over the yrs it has in different ways or my coping has gone out the window.

I too found as I can't do much friends just disappeared, family no longer ask how I'm feeling.....and if I mention the fibro word I see a glazed look or change subject.....they don't want to know.

Its lonely I feel very much on my own and different symptoms over the yrs hard to cope with. My anxiety depression worse lately as I've no energy I stand up and have to sit before I fall down

I have thyroid problems too

I've no answers as I'm muddling my way through.

Sorry you going through this too.

Rally73
Rally73 in reply to twinks

Sending positive energy and heaps of love your way! You have friends here 😊 who understands and cares. You’re not alone, instead we are united as one big family 🥰 xx

Thanks x

It's good to get it out! That's what we are here for ,sharing our rants, blasting out all our additional conditions and generally feeling like we want to kick the world up the arse! I can only emphasize with you and say remember you are not alone, sending you peace and love ✌💕stay strong fibro warrior and rant away!

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