So confused: Hi everyone I have just... - Fibromyalgia Acti...

Fibromyalgia Action UK

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So confused

KerenS profile image
22 Replies

Hi everyone

I have just joined tonight as I need to talk to someone. I have been having fibro symptons for a few years and have been on meds for chronic back pain for 25 years. I was told by my doc a couple of months ago that I have fibro and gave me a leaflet...that was it?? I saw a different doc last week as my back pain was soooo bad, I said the other doc said I had fibro and she said that it may not be without even looking at my notes! All I know is I am very down at the mo as every part of my body hurts at the mo, in particular my back, my hips, my knees and my ankles. I am 45 yet cannot climb one flight of stairs!! I hate "self diagnosing" but I am sure I have fibro but I feel alone as the first doc just said it and gave me dolsulipin and the second one was useless! I just want to know what is wrong! I know there are people dying in this world and I should count my blessings but I feel like an 80 year old at the mo and just want someone to help me. Sorry for waffling on, just feel so down inthe dumps. Thanks for reading xx

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KerenS profile image
KerenS
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22 Replies
Dizzytwo profile image
Dizzytwo

My dear KerenS first thing I want to do is give you a big gentle ((((HUG)))) The second thing is I want to offer you a very warm welcome to the group. Our stories are very similar The only difference is I found myself in a wheel chair by the time I reached your age. This does not mean this is the way it will be for you. I just want you to know I hear and understand your despair and frustration. xx

Mo

KerenS profile image
KerenS in reply toDizzytwo

Thanks Dizzytwo big gentle hugs back xx

neesey1005 profile image
neesey1005

I got through 5 doctors before anyone believed me - anxiety is part of fibromyalgia- and for me it seems to make my symptoms much worse - its hard but I try and focus on being upbeat as much as I can now (not always easy) - you may need to test drive more doctors before you find the right one -by the way welcome to a very supportive site 😊😊

KerenS profile image
KerenS in reply toneesey1005

I feel better already knowing I am not alone. Thankyou so much Nessey xx

neesey1005 profile image
neesey1005

Great. !!!!☺

KerenS profile image
KerenS in reply toneesey1005

Btw lurve your doggy 😊

neesey1005 profile image
neesey1005

Look at him who wouldn't love a schnoodle (mum is a mini schnauzer and his dad is a mini poodle). and that's how you get a schnoodle - he is two - yes love him to bits !!!x

KerenS profile image
KerenS in reply toneesey1005

Im a mad cat lady, but do love dogs aswell. My boys are 12 and called tigger and felix.....bet you cant guess what colours they are. They are my relaxation at the end of the day, theres nothing like stroking a furry coat the make you relaxed and feel happy.....unconditional love 🙂💕

neesey1005 profile image
neesey1005

Sorry can't get on with cats have been allergic to them since I was a child - the fur makes my eyes run and I get flu like symptoms Finley doesn't moult so he is ideal for me - have a pain free night 😒

KerenS profile image
KerenS in reply toneesey1005

Thanks night x

Bambamsnan profile image
Bambamsnan

Hi and welcome just wondering if you have had a blood test my last resort was a rhymatoid arthritis blood test which came back negative I no how you feel going from one Doctor to another but you will finally get one that listens to you ask gp over blood test it's worth a try sending hugs Carol ☺

lyzzie profile image
lyzzie

Hi Keren, you've found the right place to come and talk, if this lot can tolerate my moaning then believe me their hearts are big enough for another person in need of a listening ear! I had and still tend to have the opposite problem to you in that I get so many different labels and diagnosis that I didnt know if I was coming or going, Im lucky that I have a good doctor, I have a dog, he's called Bugsy, but I call him Bug or Buggles, I did have a cat but she died, she was 18 and had a good life, I didnt want to fill that gap, but pets are great arnt they, just ready to love you come what may all for the price of a cuddle. Hope you find this site as supportive as I have,

Sleep well, Lyzzie :)

Ginsing profile image
Ginsing

Morning and firstly welcome to our lovely site. We have lots of members who will extend theirs hands with friendship. Yes this is the best site, I might be a little bit batty but I have over the years found IT ( THE SITE) a brilliant place to rant to chat to help each other and most of all to learn to smile what ever !

As you read all the welcoming messages you will begin to see how friendships are born between us

I am a bit of a joker I just love to see every one has time to giggle.

Must dash catch you later

x Ginsing

Circus12345 profile image
Circus12345

Welcome KerenS, it's a shame that you feel so low, but completely understandable given the circumstances. If you can find a good rheumatologist, that specialist can be a big help with fibro issues. I empathize about the pain & weakness, I find it to be the most difficult thing to realize my limitations, and to accept that sometimes we just have to forego the stairs and rest for some time. I've learned a lot from the friendly people on this site and hopefully you'll also find some information and support here that will help you to get through this trying time in your life. Best wishes for a day that's as pain-free as possible!

Fedupofpain27 profile image
Fedupofpain27

Hi KerenS, welcome to the group xx it took just over 9 years for a specialist to diagnose me with chronic fibro and to accually put it in writing , when other doctors had said it was 'this and that' and sometimes made out it was all in my head. So I totally understand I'm only in my 40's myself and like you find it hard to walk up stairs or anywhere tbh xx don't dispair get a doctor to put it in writing you can say you need it for work or for your benefits? At least you can show anyone (including another doctor) that you do have fibro (not that you should have too!) unfortunately because you can not see our pain people don't believe you or look st you as if to say 'oh pain again? ' I hope you get some help soon hugs to you

in reply toFedupofpain27

hi keren welcome hope you get the support you need from doctors,this site is a good place to be,most members will offer you support.advice and a hug or two.i have so many things going on and as many not taken seriously by gp's.even visible signs like yellowing of eyes and general swelling-joint defornity and still get its " in my head"and with definite diagnoses and lately drs not even examining me

dawnlancaster profile image
dawnlancaster

Hi i know that feeling im 47 tommorow and iv been like this for 15 years. You do learn to cope. Try to do a hobby to keep your mind going good luck hun your on the right site now everyone on here are so lovley and caring its like having another family specially pecks shes great xx

Matrix profile image
Matrix

Welcome welcome , you properly do have it , I knew before my doctor that I had it but it took me over 40 years to get a diagnosis . Ask to be referred to pain clinic , I got diagnosed there .X

KerenS profile image
KerenS

Omg thanks to everyone 😀❤️

I just put my ipad on and saw 14 more replies. You dont know how amazing it is to have someone know how you feel! Thanks to everyone and sending hugs back xxx

Decided to go to another doc as last night my hips, ankles and knees were throbbing so bad and my elbows today. I was thinking back and I could climb stairs with a small amount of problem just six months ago as my son moved house to a top floor flat (we have a bungalow) anyway we went to a shop yesterday that had stairs and I honestly couldnt get up them....now that is not right! Not at 45! Trouble is I am not a person to rest unfortunately so I get v frustrated. One thing I would like to ask you guys..... If you have an itch and scratch it...do you find some parts of your body hurts like hell ....you know ...the I feel sick hurt when you bang a toe really bad. Its just as though my skin is hyper sensitive in lots of places! Does anyone else find this please?

Lots of love and best wishes

Keren x

Tel59 profile image
Tel59

Hi kerens & welcome..😊..as u must have noticed every one here are so lovely..this has to be the only place where u can be diagnosed as not many doctors will even listen to us..i had to tell 3 doctors the other week none of them have listened to me & i was not very happy..that was only to get a medical note for jsa while my esa is being reconsidered..😕..i was refered to see a rhumerologist who confirmed i have fibro & disk bulges..he is the only doctor that is so lovely & understanding & told me id have some problems ahead of me..maybe if u ask ur doctor to refere u it could give u peace of mind..i know it was for me as i suffered for 10 years before i knew what i had..anyways..i hope u get it all sorted soon..😊..Terri

BlueMermaid3 profile image
BlueMermaid3

Hi there

I'm so sorry you are suffering so much.

I've had Fibro, Chronic Fatigue and many other conditions for over 30 years.

You could ask your GP to refer you to see a Rheumatologist. They are the Consultants who specialise in Fibromyalgia.

However, even if you are diagnosed it is highly likely that you will be given a prescription and then sent away with a leaflet.

That is what has happened to many of us here on the forum.

I would just hate for you to feel anymore disappointed and down than you already are.

You will find the forum extremely supportive.

Oh almost forgot. If you have a look at our mother site. You will hopefully find some very useful information on there fmauk.org

Wishing you less pain and more peace

Lu x

Administrator

TheAuthor profile image
TheAuthor

Hi KerenS

Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read of how you are suffering and struggling and I want to sincerely wish you all the best of luck. Please take care my friend.

All my hopes and dreams for you

Ken

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