I just would like some advice on how people first got to grips with their diagnosis. I've spent 4 years back and forth from hospital to clinics to consultants and doctors having blood test after blood test and scan after scan. 4 years later its been confirmed what i knew i had all along, fibro. But now what...
Anyone who lives in the west midlands might know Edited By Admin thats where i saw a consultant 6 weeks ago, she told me she know i had fibro and sent me for some blood tests and scans to rule anything else out before she confirmed the diagnosis, these al happens within days. After 6 weeks i had heard NOTHING not one thing, so i was concerned something was seriously wrong. Thankfully my aunty is off work at the moment so she was ringing every day for about a week to try and find out my consultants name or secretary (the name that was on my letter wasn't actually the consultant i saw) to try and find out my results. Finally she got through last week and left a message, they called her back yesterday. The secretarys words were 'katies results show she does have fibro and i have been asked to send a letter out to her to ask her to come to a pain management clinic 1 day a week for 6 weeks' i find this disgusting, so now we are expected to ring and chase people to find out whats wrong with me? I probably had those results weeks ago and that letter should be out to me by now, but instead my aunts call only 'reminded' her she needed to send it. So ive been struggling with pain for weeks when i could be elsewhere learning how to deal with it, its like this condition isn't important to people!!! I haven't been sent a letter of confirmation a date to go back and see the consultant to talk bout pain killers (which he told me she would organsie once the results are back and im diagnosed so i will keep struggling until finally we get through again to chase them about that.
I do apologize for my rant but i only found this out last night and nobody else seems to listen and understand why i am so frustrated. All my family have said 'well at least you know now' yes i know, i know im stuck with a condition that wont get better that i will be shoved full with painkillers for the rest of my life (i am only 20) just to be able to live day to day. I have always said i would prefer it to be something serious but curable, that isn't the case it seems. I really don't know what to do anymore.
I hope someone has some advice on how to deal with the frustration i am in at the moment.
Thank you
Written by
KatieERoberts
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Hello Katie....So sorry you have had such a lengthy ordeal to finally be diagnosed with something you already knew you had! I think we have all had some experience of chasing for results but it doesn't help when you are the one going through it. Good for your Aunt! Do try not to get too angry, frustrated or stressed as this is not good for fibro sufferers. Keep plodding on with your Aunts help and get those appointments sorted for pain management and meds and let us now how you get on....
Do try some relaxation exercises which you will find on our mother site.....
Im trying to not get stressed because i know its not good for me at the moment but its so hard when nobody understands. Thank you for your kind words x
Remember one thing Katie.....We all understand! That is why this forum is so good for us. It is difficult for friends and family to feel what we feel so you just talk to us as often as you like and we will listen....Hugs xx
Thats exactly why i posted on here, i only got my diagnosis last night, my family and boyfriend didnt really seemed fazed, that at least my 4 year battle is over. But now i have to battle the rest of my life with the pain and symptoms of an incurable disease. its just very hard to be happy at the moment x
Perhaps you could deal with your frustration by knowing that it does take years to get a definitive diagnosis of Fibromyalgia, due mainly because there is just not enough information out there about this horrible illness.
I am a little confused by the message you received from the hospital though, as there is no set test that can conclusively confirm Fibro. Perhaps she meant that she had eliminated everything else that it could be.
Quite a few of us here were diagnosed by a Rheumatologist (after many many years of going backwards and forwards to our GP), given a leaflet and then discharged back to our doctors.
The current waiting lists for Pain Management across the country are anything up to a 6 month wait.
In all fairness there is not an awful lot you could have been doing in the last few weeks, so please try not to feel too upset about the whole scenario.
Unfortunately the NHS is massively under funded and is at breaking point. I don't think that your Consultant felt you were not important, although I can understand why you feel the way you do.
When diagnosed with Fibro, even though many of us may have already suspected we have it, can still be a huge blow to our system.
Some go into denial, some get angry, some frustrated.
Coming to terms with having an illness that no one can see, no one understands (unless they have it themselves) and many people still believe is "just in our heads" is hard. However, once you have been able to sort out the correct meds, etc for you, it is manageable.
Whilst you are waiting to see your Consultant again, is it possible that your GP could start you on some pain killers to help you through?
Acceptance is a huge part of having Fibro. Accepting that we can no longer do the things that we love is incredibly hard. It is like a grieving process that we have to go through.
The good news is that you have found a place where you can come and let off steam, get some advice and have a laugh along the way.
This forum has become a saviour to many people and becomes our Fibro family.
Sorry i dont think i made it clear enough, she sent me for several tests to rule anything out before giving me a diagnosis.
I looked into the pain management classes and i dont know if i would benefit but i would try them. The consultant said its meainly older people and someone young like me might not fit in.
I feel all those emotions at the moment i think. its just a shock i hoped it wouldnt be fibro even though deep down after the years of research ive done i knew it was.
I am currently on arcoxia but they barely take the pain away, ive been told by the consultant once im diagnosed i would be put on amatryapline which would hopefully get rid of the pain, but as i am only 20 this scares me to be on such a strong medication for the rest of my life.
That makes me feel better that you were diagnosed the same age as me I worry I will be in a wheelchair or something In 10 years with no chance to get married or have children etc.
I am so genuinely sorry to read of your frustration and if they had the results prior to this then you should have been informed much earlier. I have never personally been to a pain management clinic but I always think these things are worth trying if we are suffering, as we have nothign to lose?
I want to sincerely wish you all the best of luck my friend, and please take care of yourself.
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