Hi I wonder if anyone here can help. I was diagnosed many years ago with fibro . hit by sudden other problems I wonder if anyone can enlighten me. I dont get much pain more stiffness aching and weakness a biggie. breathing problems , exercise intolerant ,heat intolerance,ankle wrist joint pain, tongue and top lip swelling, ptosis fluctuating, red rashes with blood spots, blue sclera and brown dots on eyes, huge inflammation ,skin indentations, atrophy of wrist and fingers and feet ,cannot spread finger or move toes or turn feet and hands up, blistering elbows with small lumps, thickening of knuckles with white chalky substance first coming out of, small white lumps in palm areas, bleeding gums, hair loss, weird sensation either side of spine, visible pulsation in leg, dry eye, blue line top lip with breathing problems ,facial swelling and bruising hives scale skin lesions hives and all different rashes, huge bloated belly, urine and bowel incontinence ,chest swelling and pain, neck pain unable to turn one way and cramp if stretch shoulder,erythromyalgia, gums turning black, skin on arms turning bronze colour, cramps toes if move, rectal and ovary pain,urine urgency, bowel urgency sudden pains in hands that curl and cannot move ,feeling of walking on pebbles, bad bruising , intermittent bruising under eyes, smooth tight forehead one side only, sleep like a log, extreme tiredness, snoring which comes on suddenly, sleeping with eyes open ,neck and collar bone swellings, red v rash on chest with white areas and darker red marks, swollen breast with big blue veins showing.
I appreciate the criteria has changed for fibro thankyou
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stiff19
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Hi stiff19Sorry to hear you have such a wide-range of symptoms. Best to have a medical assessment. Some of what you describe may be part of or affected by fibro but may be other conditions.
We are fellow fibro warriors so not medically trained.
It can be hard to get answers when our symptoms are so varied.
Maybe keep and show GP a diary in case that helps identify what's going on.
Thankyou for replying , yes I think fibro ,or my interpretation of it can lead to fibro diagnosis but outstanding symptoms something else. I know you can have fibro but also other problems and just find it exhausting that once you have a fibro diagnosis then everything else is also put down to it. I have been looking for support for years but hit brick walls . Thankyou so much for the reply, I think I need to change my gp finally.
Hi Stiff, I agree with the others, best to see your GP. I can only speak to my own experience but when I get new symptoms I now get them checked out by my doctor. Many of my symptoms are due to fibromyalgia but others turned out to be something else entirely.You have a wide range of symptoms and my heart goes out to you. I hope you get the help and support you need and deserve. God bless, Elaine xx 🤗
just read your post from a couple of months ago and so sorry to hear of your fur baby loss 🤗🤗 It must still be tough ,I lost mine a year ago and still miss him. I recently adopted another about 8 weeks ago 🥰 just wanted to send sympathies as I understand your loss and send love and support 🤗🙏
Aww, bless you stiff19. That's so kind. My heart is still broken. I'm so glad you have found another little one to love and bring you joy and laughter. They do lift your spirits.
When we've recovered enough we will look for a new fur baby to share our lives. I was so touched by your reaching out. Thank you xx 😘
I know how much the heart breaks and not everyone understands the loss of our four legged friends and I could see by your post how much love was there 🥰 Yes it is a joy having another to love but no replacement , they are all unique. When the time is right im sure you will find another lovely fur baby to love and enjoy , but enjoy your cherished memories too🙏🤗xx
True. She was unique and irreplaceable stiff. I have many wonderful memories of her and the love and the joy she brought us. My life was blessed because of her. We saved each other and I think that the circumstances of our meeting made our bond so special xx
As others have said please go to your GP. What I will say is that a lot of your reported symptoms are not part of the the older or current diagnostic criteria for fibromyalgia and not even the moving needle that is the Facebook fibro symptom list.
Some of your symptoms would definitely be worth talking to your GP while others may be from the effects of fibro but not part of fibro e.g. the atrophy
Thankyou ,there is so many different criteria for fibro can you tell me please where I can find the current diagnostic criteria ,I dont have Facebook. 🙏
In terms of diagnostic criteria there are only a handful and they are evolutions so not that different. The current criteria can be found at fmauk.org/acr2016
Thankyou I know in my heart after years of fibro ,this is more than that im suffering but I was just looking for peoples own definitions as I am made to question my sanity with the neglect.I appreciate your reply thankyou 🙏
Thankyou so much yes you are right but sadly my gp is not good on symptoms especially skin he just says strange and says I have so many symptoms he does not know who to send me to and that I can only mention one symptom he cant deal with more 🤷♀️. I wrote really to reassure myself that all is not fibro I dont believe because of so many symptoms and I appreciate your supportive reply thankyou 🙏xx
If you look on the official NHS site and put in Fibromyalgia symptoms in the search area it will give you a list of symptoms. Many of those you are suffering from but as others have said therr are definitely others that aren't typical of Fibromyalgia. I would go to your GP about the breathing problems. Perhaps if you saw a different GP at your practice or as you say go to another surgery. Good luck.x
I hope with all them things going on you are posting from a hospital bed???!
I also hope you have a great GP too, I'm afraid to say all Fibro warriors are warriors for the simple fact that every morning when we awaken,We open our eyes and as soon as we do that we will either feel at best achy and find it hard to sit up and calculate whether we have enough strength to get to the loo or commode,
That's usually when I know if I'll be able to carry on with the day or being curled up in a ball and sob to myself because the many many tablets I take, Do not get rid of the pain,
That's just me, Mine is just a tiny weeny part of all of us all that wait patiently for the day when we are told there IS A CURE😀🥳🥳🥳🥳🎉🎉🎉
I believe in showing kindness and loving to all you meet,There are many that a lot worse off than me,
Research as much as possible and smile even if it's just to yourself, You already know these things, Look after you, You know we are all here
I will be honest with you, I have theses multiple symptoms some come and go some remain and some are returning. I get what you say about getting up, ,ive had this but more than pain mine is aching stiffness weakness and sudden pains now. my symptoms on not being linked to fibromyalgia are many I feel and yet years of everything being put down to fibromyalgia as a whole diagnosis. I find ever since ive had fibro that any problem ive had has been brushed off as being that. I was diagnosed many years ago when docs didnt believe in it and re diagnosed 6 years ago but also told due to other symptoms I had palindromic rheumatism. then not and medication stopped but from there it all went downhill.years of hell with all sorts of skin problems and slow progression ,skin probs many big inflammation and then a short high dose of steroids which alleviated some but all still therein more returning.last seen 2 years before steroids as signed off immediately from all , no test before or after but I used to send skin pics and worsening to dermy (who had me waiting for a referral to Bristol hospital only to be told after two years not going to have the appointment.) After last lot of pics sent to dermy I received a call from cancer department but missed the call then a sudden call from ent to take steroids. I put in a complaint it's ongoing.
Ive researched much and cannot link majority to fibro which is where im at a loss. With covid and not being seen generally I have a huge gap in history and they just refer to years before. When everything boils down to bloods and not clinical pictures it's scary and scared I am now as not all shows in bloods and could my signs be paraneoplastic? or disease? .or fibro? though I personally feel if fibro is only part of.
I know how ill ive been and feel now but before steroids it was like inflammation had a hold of me , I have pics of swellings but mostly told no inflammation due to bloods but what the swellings are if not inflammation I do not know 🤷♀️.Initially I was told fibro does not have inflammation now I understand it does. does it progress or not, my bad health has.The skin is what bothers me, maybe I will do another post and ask of the skin.
You are right there is not enough kindness in the world especially from those who are meant to help us I must add. There's always someone worse off than us and my heart goes out to them but it also doesn't change our own sufferings. The rheumy I see who told me its fibro 6 years ago said count yourself lucky you dont have cancer.😡 🤷♀️
smile inside we have to ,to keep our sanity and of course to help others.
thankyou for your reply which shows what a kind person you are naturally 🥰 take care too 🙏🤗
no of course not. I know my situation is a lot to comprehend, for me it has been a living nightmare . My questions are just to try and help myself work things out as I know or feel I have more than fibro but 🤷♀️ I can accept what fits but it leaves outstanding.sorry for waffling its just frustrations of unanswered . we all are here as we have much to deal with ,take care 🤗
I can only imagine what people really think of my posts but it is what it is and ive had a lot worse than laughed at😂 trying to get 6 years worth into a couple of sentences is tough 🤔being a long journey. I will take a look 😂😂
You should try to put all of this into a word document once and for all so you can bring it to new doctors and have it for your own records too. I’m going to start working on mine as a working document to add to with symptoms, diagnoses, places, names, dates. It’s important for me to do this for my family too, in case something happens to me, they would have some idea of the crimes of neglect and gaslighting.
Yes I should I guess , but I may post it as I dont know when my next appointment will be but then I dont know if will ever be read. Yes its good you mention family, this is such a great knock on effect with family having health issues unaddressed , I worry too if my kids will be affected with my daughter already showing her own issues very similar and same as me bloods ok they say except for anaemia but then they never see her again, its as if the minute they do a blood test if it doesn't hold what they're looking for then you're not suffering 🤷♀️. I told my daughter if anything happens to me to keep chasing this and answers as she has been with me to many appointments and seen letters and is sadly all too aware of this. Im so sorry you have to start doing this, and suffer the same 🤝🤗
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