When diagnosed with Fibro, were you g... - Fibromyalgia Acti...
When diagnosed with Fibro, were you given any information explaining the condition?
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Surgery induced hypothyroidism due to Graves' disease
I WAS IN A LOT OF PAIN FOR MANY YEARS MY DOCTOR SAID IT WAS STRESS .THEN I SAW ANOTHER DOCTOR WHO SENT ME TO SE A RHEUMATOLAGIST .HE JUST SAID YOU HAVE FIBROMYALGIA .HE DID NOT TELL ME WHAT IT WAS AND MY DOCTOR DID NOT TREAT ME FOR IT .I HAVE TO GET INFORMATION MYSELF .
It took 5 years before I was diagnosed with Rheumatoid arthritis both going privately and on the national health. Then 3 years after this I was told that I had secondary illness fibromyalgia. At least now I have some idea of what is wrong with me but not a lot of advise given or any leaflets. I have tried to research myself. So glad to have found this site as I had no idea there was one before.
Although I was given a leaflet, the rheumetologist didn't explain what it was and just discharged me and told me not to get any more info from the internet. Not much help at all.
Yes I was given a leaflet, but also did the research myself.
I have t say that my hospital & specialists are excellent, I am one of the lucky ones
I live in SE of UK and have a lovely consultant, but he covers such a wide range off illness he doesn't have time to check out much about fibro/CFS etc, he will give me steroid injections in my hands to help ease the pain of arthritis there an then. Because my health is so poor and my immune system is so weak he told me I must not have any operations, and he will discuss this next time, I have had the date of my next appt. November, just great, but no help or info on fibro/CFS , love and hugs to all xx
I was given the standard booklet they had in the waiting room.
I have had fibro for 10yrs now I was just given the standard booklet to from the rack of booklets, disgusting really.
Lol you wasnt at salford was you.
It probably started with Graves disease back in 1986 that was around the time the pain started,but was told it was degeneration I was all of 42 and I would be better when I was 50.now nearing 70 and only got a diagnosis because looked up some symptoms on the internet .It came up with Fibromyalga and told my new GP who had done loads of tests all came back clear.she looked at my records and said I think you are right ,and sent me to see a Rheumatolagist in June last year who confirmed it .
My consultant rheumotologist hadn't got any leaflets and told me to contact the Arthritis websites and also look it up on the web. I was diagnosed back in 2003. Took about 2 years for a referral to consultant and told diagnosis on the spot. I was so relieved that there was a name for all this s**t I had been feeling and I thought that what turned out to be Fibrofog was the start of Alzheimers! Thank goodness for small mercies.
I was given no info at all. And still feel certain Dr's doubt the illness and have very little sympathy or advice.
Yes I was very well informed by the consultant paperwork and followups.I have had it for six years now.Did not get a blue badge, or benefits I did not have to time to fight for them.On 17th June my husband passed away at home.I gave him CPR until help arrived.We have two businesses to run here and all of the funeral arrangements.The Celebration and funeral will be on Tuesday 9th July at 3pm.Quite a lot time after he passed away because There are a lot of people passing away in Cambridgeshire.So we have to be patient.I am fine coping with everything but have no voice because of so much talking for the last two and a half weeks.It makes you stronger and the Fibro has kicked in but am coping with tremendous doctor support from my surgery.Take care everyone.Keep on going whatever life throws at you.You get one life live it to the full as much as you can. We were married for 42 years and he was my Rock and still is.God bless all of your.Love xxxgentle hugs Petra
I was given a leaflet and told to look at a website I was given. Neither were much help. This forum has been brilliant.
I was given an explanation verbally but it was stressed that it was not an illness as such but a condition. Another doctor at the same hospital who gave me an ultrasound on both shoulders said that the term Fibromyalgia was never used at the time he attended medical school and that as far as he was concerned, you couldn't treat anything that you couldn't actually see. About three years on , now that I have sufficiently calmed down about this statement , I can see the funny side of it !
hi everyone.
i was told i had fibromyalgia by a locum gp, i had been going to the doctors a log tome and was allready been seen at the pain clinic for steroid injections for a few years. on my next visit to the pain clinic the consultant said he thought i had fibromyalgia because he saw me waiting to go in wearing shades, hat and i pod.
i think the locum realised because there was a medical fridge in the room and the noise was too much for mw to bare, he also turned off the strip lighting for me. i had wondered how he had knowlegde (he's probably about 60) as it's a newly termed condition apparntly younger doctors know more about it, when my gp had never mentioned it in all the years.
i came straight home and found this forum, researched on line ect, it was EXACT. so many similar symptons.
i think we are all learning from each other at the moment. i'm mid 40's, it's quite overwhelming thinking about how i will manage when i'm older nevermind now
love to you all xxx
Consultant told me his words not mine good news and bad you have fibromyalgia and there is no cure or treatment good news your not going to die from this. And gave me a leaflet with very little information on how to treat it. Or get help just lft to get on with it.!!
I was told to look it up online
Like PennyUK I was told to read up and learn as much as I could online and encouraged to join a local FM support group.
I actually put forward FMS as a possible diagnosis to my doctor. Many tests ruled out everything else [except OA and Osteoporosis] and, finally, the consultant confirmed this with the Tender Point test a few years later.
In spite of all this I do feel relatively lucky that my GP is quite understanding and does what she can to help.
I was ggiven a laeaflet but was not told about the condition directly, I had to find it out myself through books and online.
I was diagnosed with fibro 10 years after the initial diagnosis for inflammatory arthritis (RA). My RA was mostly stable for that first 10 years once my meds were tweaked. Most of my pain points and symptoms were eventually deemed to be fibro rather than all RA, although I still take RA meds otherwise I seize up altogether. So it has been a case of adding the painkillers to the cocktail to try and get me to sleep (success most of the time) after over 20 years of insomnia, and to deal with the lovely pain and debilitation we all know from fibro.
Having moved counties, I've gone from seeing a rheumy every 3-6 months to one who only wants to see me if my RA symptoms deteriorate. He is happy for my GP to handle the fibro, but I do attend his clinic for steroid injections in my knees 2-3 times a year but it's one of his team who does it, not the rheumy himself.
When I got the fibro diagnosis, almost in passing, my original rheumy told me to check things out online and we'd start the next round of painkiller trials in the meantime.
I diagnosed myself. I had a negative test for rheumatoid arthritis, but I knew there must be something wrong with me. So I did some research and suggested to my GP it might be Fibromyalgia. she said "let's see if the amitriptyline I'm prescribing you help you sleep. If they do, then that's what you've probably got"! I never get anything suggested by my now different GP (same practice), but he will take some suggestions on board.
I went to see a rheumotologist for the second time a week ago, and was told off for going, he told me I should not of got an appointment with him.
I asked him if he knew what was wrong with me and after a two minute exam, he got his consultant from the other room who told me I have a very severe form of fibromyalgia and I wasn't to come and see them again. I had to go to the pain team. The consultant then left and the other Dr gave me a leaflet .
I asked about the joints which along with unbearable pain ,swell up like balloons, my ever changing colour of skin from the bright red limbs, to the blue motley colour legs ( I showed him photos of all of this) all I got back from him was " no comment" go to the pain team
I am now awaiting a appointment for the pain team. I can accept I have fibromyalgia but I think something else is going on as well, but is not showing up in blood tests.
My GP is great but all he can do is send the referring letter, he referred me for physio last November and I still haven't heard from them. So all my GP does is increased my pain killers
Sorry for the rant just fed up of being in pain, this all started with a sore hip 14 months ago.
So really fed up can't even get out of bed or dressed properly. With out my daughters help
I can't believe that a little over a year ago I was fit and healthy , I never took any tablets not even paracetamol and look at me know on MST and Oramorph along with another handful of tablets. I am now on ESA was told I had been put in the work related group. I had to appeal to get this, but it never went through to appeal the decision maker changed it which was I
Think in February . I have not heard from the job centre to attend anything.
After breast cancer treatment involving surgery chemothrapy and radiotherapy I was struck with Fibro. After many many tests to rule out other nasties this was the diagnosis. The consultant told me... if you lose 2 stone in weight in 2 years it will go!!! 2 and a half stone lighter and 3 years later guess what... yes I still have Fibro and it has escalated. Needless to say I went to see another consultant and this was a much better experience.
It took 7 years for my diagnosis. I was very lucky with my rheumatologist, he was very thorough, listened very well and after doing tests and taking bloods he told me, in a very compassionate and gentle way, 'You have Fibromyalgia syndrome, you are not going mad.' He explained about the pain and how it really fell into a 'gap' in medical understanding and diagnosis and then he said, 'I'll just go and get you some information.' He then left me alone with my thoughts for a whils, gave me 3 or 4 different leaflets and also a contact number for a support group, arranged for physion and plunge-pool treatment and asked if I had any more questions. Sadly, he retired 2 years ago as I am sure that we could do with more people like him.
refer to hospital who confirmed fibro then i was given information
My mother researched the condition and told me about it, so I took a long list of symptoms - well I'm not a doctor and anything could have given him an answer - he was grateful for the list and said it would be useful and that he had had FM in his mind for a while, so that was why I was sent for tests to rule other things out and clarify the situation. My doctor has been wonderful - but he is retiring! I hope the new one is as good. I was sent to a Rheumatologist at my works request, and he just confirmed what my doctor said with minimal testing for trigger points.
I was given a standard little leaflet, which was no help at all, as I already knew the information that it stated.
I did all my own research online and got far more information that way.
I got a leaflet and address and details of local support group and that was over 20 years ago I was lucky with a very informed GP back then
VG
Hi
I worked out it was fibro from researching myself and also made links myself to the fact that I have had depression long term as a result of an abusive childhood therefore have had long term stress and also had sleep problems for a long time though not now. When I saw the rheum consultant he was absolutely excellent! He said the history I presented with was absolutely classic for the majority of people who presented with fibro symptoms. It was really helpful just to have my own understanding confirmed and not have it rubbished as can happen with those medics who need to be the expert. I always think the very best consultants are those who are mature enough to know that the patient actually knows themselves best!
The neurologist who told me I had fibro was a temp covering for the one I had been seeing who had left. he was more interested in me describing the symptoms of RSL to a junior dr than anything else.I eventually asked him, as he showed me out of the door if the last tests had shown anything up."oh" he said" you have figromyalgia you will have good days and bad days". He did not even send a report to my dr ,who I have just found out is totally clueless on the symptoms of fibro. Am finally seeing rhumy on fri.
I guess I was lucky the Scottish Rheumy who saw me diagnosed Fibro then went on to try and help the other things that are wrong with me. He was very thorough and I thank him for the care and attention he showed me. My Doctor is still not totally convinced but he is also very helpful he now cares for my pain killers as the Pain clinic just asked me what I hoped for and said what meds I could up.
Although the Rheumotologist who diagnosed me gave me some information about my condition, it was very basic. I was completely lost when I left her office in regards to what I had just been diagnosed with. Over the past couple of years I've started a blog for Fibro sufferers and share solid information I come across because what I found to be the most difficult thing was finding up to date, comprehensive information on this disease. I found you really have to search and remain positively skeptical when reading what the internet has to offer. There is a lot of BS out there in regards to Fibro that can just be discouraging and make us feel like we have an illness that no one has a clear grasp of. Ive found some great sites online but for the most part, I have had to do all the research on my own. I have yet to find a Fibromyalgia Dr anywhere near I live and even though my GP is an amazing Dr., he has very basic knowledge of this illness.
No information given and when I asked to be referred to a rheumatologist I was told it wouldn't happen as there is nothing they can do! You couldn't make it up!
i was happy to finally get a diagnosis after many yrs of pain at times becoming unbearable for the past 4 yrs i was only diagnosed in april this yr after being refered to pain management.i was told it was fibromyalgia when i explained my symptoms & he done the pain point test thing,i am so glad to of found your site it has been so helpful & reassuring to no im not alone,thank you so much
I was diagnosed almost 10 years ago and on the whole have had to look after my own Fibro. I have now been given Amatriptiline 10mg to take once a day. It does help me to sleep but I still wake up with pain all over. People have not got a lot of sympathy because there is no outward sign of the disease. I don't need sympathy just a little understanding would be helpful. Glad I've found this web site. I've been reading a few of the blogs and finding them so helpful. So thank you.
